Diary part 2

Hey Guys, Welcome to my diary 2011.

The diary is posted with all latest entries at the bottom so please scroll to the bottom of the page if you want to read the most up to date account. 

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Happy New Year everyone!

Welcome to this years instalment of my diary of living with a functional stomach disorder. I am writing this story of events to help me find people with similar problems to my own. If you could post this link around facebook and twitter for me I would be eternally grateful. I need it to reach as many people as possible in order to find some answers.

Please leave any comments or feedback on the "HOME" page of this site. Or you can now follow me on twitter @helpmeminx

Here is a before and after picture for you, The top picture was taken 4 months before I got sick.


This is me now : (

 




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Monday 3rd January 2011
52.55kg

Hurray! I have finally reached my target weight of 53kg. Hopefully this means I should be able to go home very soon. I can't wait!!! I have had some really useful comments on my home page this week, thankyou to everyone who posted on there. It keeps me motivated to write this page and makes it all worth while xxx

I was allowed to go home over the weekend so got to see the new year in with my family, which was a lovely treat. I didn't want to come back to hospital at the end though, it gets harder every time. I had a great time with the children and loved being able to tuck them into bed at night again.

I haven't seen a Dr today with it being a bank holiday so maybe tomorrow I'll have more news for you. At least a few days at home has lifted my spirits, I was starting to get really down again with being stuck in here and with last weeks visit from the consultant. So I just keep plodding on in my journey for answers.

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Saturday 8th January 2011

I came home the Thursday after my last blog. I saw a different consultant who didn't really know me. As my weight had hit the target we had agreed, he let me come home. I have made an appointment to see my GP on Monday and also got my London dates sorted out. I have an appointment booked with my consultant next Thursday 13th January. I'm seeing the joint hypermobility specialist on the 27th january and the neuro gastroenterologist on the 28th january. I still don't have a date for the gastric emptying study in Leeds yet so I just hope it doesn't clash with any of my other dates. I also spoke to the eating disorder nurse on Friday and she is going to contact me next week with an appointment.
 I saw the dietician before I left hospital who was pretty useless really. She said she wanted to leave it to the community dietician to deal with, as she knows my situation better. So I left hospital after 5 weeks of NG feeding without any supplement drinks or calogen to keep me going. It's just really bad practice! Luckily I have a few bottles of supplement drinks left at home to see me through until Monday, and I have enough common sense to know how much I need to aim to drink each day.
 Sounds like an awful lot to do when I still feel so ill, I will be so glad when this is all over. I feel so drained with it all. I have been trying too hard not to loose weight since I came home and overdone it big time! Today has been the day from hell. I sometimes feel so ill that I wish it was all over and I could get some peace. It is unbearable living like this and everyone around me suffers the consequences. My husband and the children are really the only things keeping me going right now. I think I'm at the point of acceptance, that I really just can't tolerate food at all, maybe a PEG is my only hope of getting my life back?

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Tuesday 11th January

I went to the Dr's yesterday to fill him in on recent events and appointments that had been made. I asked him if he would be able to refer me to a different consultant, we suggested that leeds may be a good start. He has agreed to do this for me which is such a relief, I only want someone who I can trust. I also found out that the gastric emptying test has not been booked yet and they have no record of a referral. Typical!
I have spent most of the day in bed today, I woke up feeling sick. I must be doing something right though because I haven't lost any weight this week which is great! The nurse hasn't got back to me with an appointment yet so I still don't know when I will see the dietician yet. I've had some more great comments on the home page this week thank you to everyone who posted.

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14th January 2011
52.9kg

Hello all! Have had a bad few days so, apologies for  not posting sooner. I Went to see my consultant yesterday and explained that I had managed to keep the weight on but it had been tough going and had caused me a lot of pain. I also mentioned that I thought I would have more energy than this when I came out of hospital and couldn't understand why I was so tired and breathless all the time. It turns out that the last blood test I had in hospital showed that I was anaemic. Well that explains it then lol He said that he thought that it was a reaction to the Mirtazipine?

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Saturday 15th January 2011

I had a phone call from my GP yesterday evening, he has arranged for me to see a gastroenterologistcalogenfortisip compact. I am also trying to eat little amounts throughout the day but it never really amounts to anything substantial.
For some really strange reason I love watching all the cookery programmes at the moment. I find it strangely satisfying to watch even though I can't eat anything??? Just thought I'd share that strange piece of information with you all lol. I've had a better day today, I have spent all day with the children baking cakes and biscuits. I think it's what we all needed. I've really missed spending quality time with them.  I'm making the most of being at home with them as my trip to London is coming up and I will have to leave them for a few days again. I haven't told them yet so I hope they don't get too upset. My daughter particularly misses me when I'm not there. She has been very cuddly since I came home and I worry that all this separation is affecting her emotionally. I think it's about time someone put this jigsaw together please, so I can get my life back on track!

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Wednesday 26th January 2011
51.4kg

Hi guys, sorry I haven't posted for a while but I've had a tough week. I went to see the eating disorder team last thursday. It was quite uneventful really. I filled them in on what had happened whilst I was in hospital and had a general chat about how I feel etc. As far as I can gather I think they are going to stop seeing me soon as I don't really fit into the eating disorder category, and the resources are really needed for other people who they can help. I'm still waiting for an appointment with health psychology which should be coming up soon. They will take over from the team that I'm seeing at the moment. I still haven't seen a dietician since I came home, which I would have thought was the most important thing but i'm trying to eat as much as possible which is all I can do really. I have lost a bit of weight this week so am a bit worried that this will mean i'll have to have the PEG. To be honest I don't think I care anymore, if it makes me feel any better than I do right now i'll do anything. I feel like i'm on a roller coaster with my weight, I lose it...get fed in hospital and then come home and start the cycle all over again, and there's nothing I can do about it. I feel totally out of control of my life. I am taking so many tablets that I don't know if they are making me better or worse but some days I feel like a total space cadet. I was feeling so bad on monday that I decided not to take them for a few days but it didn't help. I started taking them again and will talk it over with the dr when I go next.
I have my appointment with the hypermobility consultant tomorrow and the neuro gastroenterologist on friday, i'm pinning all my hopes on getting an answer this time round. I also got my appointment in Leeds with a new consultant on 16th february but still no sign of the gastric emptying test.

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Thursday 27th January 2011

Interesting developments today! Finally we are putting the pieces of the puzzle together. I went to see the hypermobility specialist this evening and he confirmed that I have ehlers-danlos syndrome. I will have a look on the internet and update my hypermobility page as soon as I get back to yorkshire. He said that it is a genetic condition and is passed down through families. Our family is a strange one, as it seems to be more apparent in each generation. My nana had a few aspects of it and my mum has a few more. I am worse than my mum and I think my daughter will be worse than me, as she is already showing signs of internal problems at a very early age. He said that the problems I am having with my stomach is directly related to the syndrome as it effects the connective tissues throughout the body. Apparently the link between ehlers-danlos syndrome and functional disorders have only recently been discovered....it's worth mentioning that it was the consultant who I am seeing tomorrow who first made the connection! So now we know the reason WHY my stomach isn't working properly and what to expect as I get older, all we need now is for someone to tell us what can be done to help with my stomach problems. I'm hoping that tomorrows consultation will be as helpful as todays....fingers crossed!

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Saturday 29th January 2011

Finally my whole life is starting to make sense! The diagnosis of ehlers-danlos syndrome (EDS) explains so much about the symptoms I have been getting. My heart skips a a beat quite frequently and also starts racing for no reason, I thought it was due to the weight loss but it is very common in EDS. Also the pain under my rib cage is a muscular pain caused by hypermobilty of the accessory muscles (upper chest) which explains the shortness of breath. The fatigue and low blood pressure also coincide with the syndrome as do the headaches and curvature of the spine. The condition causes the gastro intestinal tract to become slow and sluggish which allows a build up of bad bacteria in the gut. This then causes pain and bloating.
I went to see the neurogastroenterologist yesterday and went over my recent hospital stay, I told him that the test results had been clear but I had not yet had the gastric emptying test. He said that it was very important that I have this test and he could arrange for me to have it done in London. The reason for this being that he wants me to have another test at the same time. Its called small bowel manometry which can only be done at the royal london hospital. He said that they may also take a biospy whilst I'm there. He has increased the dosage of mirtazipine and olansapine, and prescribed augmentin (antibiotic) and VSL3 (pobiotic). This is to kill any bad bacteria in the gut and then replace it with the good bacteria from the probiotic. We asked his advice on whether he thought the PEG was a sensible route to take and he said that it was a reasonable suggestion and to go ahead with it if I start loosing weight again, but to wait until I've had the tests first as it may interfere with the results.
I also saw a physiotherapist who specialises in hypermobility syndrome. She has given me some deep breathing exercises to do to build up my core muscles, she didn't think it was a good idea to be doing anything more than this at the moment because I am too ill and don't take on enough calories to allow it. She has given me some good advice on how to reduce the risk of injury to my knees and neck as these are problem areas for me.
I have to say that it has been really nice to finally meet some people who know what the problem is, and are willing to work together to help me get better after all these months of uncertainty. I still have a long way to go but things have finally fallen into place.

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Wednesday 2nd February 2011

Well i have posted some questions on the forum and have had replies already! It's so nice to finally "have a place." Up and coming dates are 14th Feb paediatrician  with my daughter 16th Feb Leeds for new consultant, 17th Feb regular consultant and still waiting for dates for gastric emptying and small bowel manometry. I'm also still waiting for an appointment with health psychology who are taking over from the eating disorder team.
I'm doing all the exercises the physio gave me and using deep heat patches for my rib cage. I can't say the pain is any better but at least I can work on something now! I'm still spending a large mount of the day in bed, as it seems to be helping me to keep the weight on, As soon as I start "pottering" it seems to just fall off. The increased dose of tablets has also made me very drowsy and find it almost impossible to open my eyes at times. I'm not sure how my hubby has taken it, he doesn't say much about it but gets very angry about the way i've been treated recently. I think he would benefit from talking to someone too. That's all I can manage today too tired to concentrate properly, I'll post again when I feel a bit more human!

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Saturday 5th February 2011

Hi guys. Have been mostly asleep this week and feeling like a total space cadet. I have increased the dose of mirtazinpine and olansapine and started the antibiotics as suggested by the neuro gastroenterologist. They have rendered me pretty useless this week and now my mouth is really sore too...just another thing then! Tablets are evil, they take away one set of problems and replace them with a whole bunch of new ones.
On the progress front I have had my letters back from both the specialsists who I saw in London and this means that the Dr should have his copy too. The letter from the neuro gastroenterologist basically outlines that he would like for the tests to be organised as soon as possible and if the gastric emptying study cannot be organised locally that he would be happy to organise for me to have it done in London. So hopefully my GP will sort things out pretty quickly now. The other letter from the joint hypermobility expert goes through my entire family history and my life from first starting to walk. It's very strange to suddenly realise that I have been showing the signs of this since I was a few months old and yet nobody picked up on it. All those weird little things that I always noticed about myself now suddenly make sense.
I have been on the EDS forum this week and spoken to several people who have been diagnosed with the same type as me (type 3). They all have such a wide variety of symptoms, but many complain of long standing gastric problems.  I spoke to one girl who also had the same issues as me and she has already had a PEG fitted. She said it has helped her to get some kind of normality in her life as she can just put the feed up overnight and doesn't have to think about it during the day. It sounds great not to be under constant pressure to eat.
I don't know how much this is going to effect my body as I get older yet and most of the literature I have read points to treating the symptoms as they arise. As I said before, the forum hosts a wide variety of people and symptoms from wheelchairs to digestion and chronic fatigue. So I don't know if it's a good thing or a bad thing for me to be looking at right now. I think I need to arm myself with more knowledge of this before I scare myself silly. So back to the e:journals for me!....just as soon as I can stay awake to read them! x

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Wednesday 9th February 2011

Well I have been doing some more research on my weird and wonderful symptoms and have found the EDS forum to be invaluable! I was wondering how the low BP and racing heart beat came into the equation but apparently many people with EDS also have something called POTS (postural orthostatic tachycardia syndrome). Which basically means that the blood pressure drops when you stand up ( postural hypotension or orthostatic intolerance). This explains the dizzy spells etc and also why I feel so ill after climbing the stairs etc or even just from sitting to standing can be an issue at times. It also explains why I don't sweat in the heat and always feel cold, I just thought I was odd! I really wish I had found this forum 6 months ago, it would have saved a lot of heartache and frustration.
I have set up a new page with links to all the sites I have found to be useful, most are american sites at the moment but I will keep looking for relevant uk sites and post them up for you all.
I have noticed this week that the number of people viewing my page has diminished somewhat over the last few weeks, if anyone has any suggestions on how I can reach a larger audience I would be grateful for the input guys. Is there anything you think I need to do to improve the page?
I have my appointment with the new gastroenterologist next week and am hoping that they are willing to take me on lol. All I want is for a team of people who can work together and communicate with myself and my GP. Lets hope they can!!!
I have managed to maintain my weight this week too! I think the antibiotics have helped with some of my symptoms and I have been able to eat a little bit! At the moment it is only a very small amount but anything is better than nothing....it's all progress! I'm hoping that when I start the VSL3 later this week I will see some more improvement...fingers crossed guys! I still have a sore mouth but its worth it to be able to eat something real instead of sickly fortified milkshake! I have on the other hand, had hiccups for the last 3 days, I'm starting to wonder if this weird family trait is also a side effect of the EDS diagnosis. I will ask around in the forum to see if anyone else suffers with this and i'll let you know my findings. It may sound like a trivial thing but believe me, after a full day of hiccups it really starts to hurt. x

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Sunday 20th February 2011

Sorry for not posting sooner, have spent the last few days wishing I was someone else! I'm tired of Drs and appointments, pills and pain. I want to live life for a change!
I have had a busy week with my appointment Leeds on Wednesday which went about as bad as it could have done. We didn't get to see the consultant himself, instead we got fobbed off with either his registrar or a junior doc. He didn't really listen to what we were saying, prescribed more pills (some of which I have tried already) and said they would see me again in 4 months. We did try to explain that we wanted to move from our local hospital to them but he was very hesitant and just said that if I needed to go to hospital for any reason then I should go to Leeds and do it that way. As he was looking through the various letters in my notes he said, "oh, you have EDS as well" at which point my mum and I gave up!
The following day I had an appointment with my regular consultant, who made a point of showing me his double jointed fingers and then said that he didn't believe the link between EDS and abdominal pain. I'm sorry but my money is on the two professors who diagnosed it, they are far more qualified than he is! He didn't mention the gastric emptying test so I told him that I would get it done in London when I go for the small bowel manometry. He was happy for that to go ahead so I suspect he still hadn't organised it locally. At least I won't have to see him again now until after the tests have been done...woohoo!
I went to see my GP on Friday because I feel so tired and light headed all the time. The pain has also been worse since Wednesday so she gave me yet more pills to take....great! However I did find out that my GP has already sent the referral to London for the tests, which means I wont have to wait as long for things to be organised.
So a busy tiring and emotional week, I hope things start to pick up soon....I've had enough.

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Wednesday 2nd March 2011

Have had a very settled week this week. I have even managed to eat some real food for the first time in nearly a year! I still can't eat a great amount at any one time,  1 slice of toast is about my limit before I feel too full to carry on. It is such a relief to finally have some progress at last.
I have at last got my appointment through for health psychology, it's on the 11th of this month so we will see how that goes soon. I haven't had my appointment through for the London tests yet so I still have no idea how long I will be waiting for that. I also have an appointment with occupational health on the 9th, to see if they think I am fit to work. I hope it all goes ok, if they don't think I'm up to it I will be forced to leave uni altogether and my chances of a nursing career are gone. I asked my consultant if he thought I would pass the medical and he didn't give me a response, just changed the subject. So we will just have to wait and see. I need to at least try and get back into it and see how I manage with my weight and energy levels. If it's too much I will have to stop but I can't give up without having a go! Watch this space...

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Tuesday 8th March 2011

Hi guys,
Sorry I haven't posted for a while but I have no more news as yet. I still don't have an appointment for the London tests. I do however have my occupational health assessment tomorrow. I'm a bit nervous about it, as my whole future rests upon their decision! I suppose it will depend on what kind of questions they ask me. My step dad suggested that I should ask them if they can arrange for "reasonable adjustments" to the course to enable me to do my theory in a block and hold back my placements until I am a bit stronger. If I was working for an employer I would have more rights than I do as a student but its worth a try.  I don't think I am up to working full time shifts on a busy hospital ward just yet. I am only just able to keep the weight on now and I spend most of my time resting. Who knows??? Hopefully they will be able to tell me what my rights are as a student, the university has been terribly inflexible over the whole thing really. Stating that If I went back it would have to be either full time or no time. Why they won't allow me to do the work from home I really don't know. I'll let you know how it goes tomorrow....cross your fingers for me xxx

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Wednesday 9th March 2011

Had my interview with occupational health today. I thought it would be quite a quick process but I was in there for 2 hours. I saw a Dr who was very nice and not patronising at all. We went over what had been happening over the last twelve months, medications, tests etc etc. He said that it was a very interesting case and he wasn't sure what to do about helping me back to uni. He didn't want to sign me back fit for work without the approval of my gastroenterologist. This worries me as last time I saw him I asked if I would be fit to go back and he changed the subject!
 He also wants to speak to the rheumatologist about the ehlers danlos syndrome to see if there are any special moving and handling issues. The problem with all this being that we only have a few weeks to sort all this out. He said he would get on to it straight away and would do everything he could to help me back to uni. He did also mention that the disability discrimination act would possibly work in my interests as EDS is a recognised disability and that the university have an obligation to make some reasonable adjustments for me. This is great news as now I have some backup if they won't be more flexible this time round!

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Well, have had my first appointment with health psychology today. Don't really know what to think but I'm open minded and will give it a go. Her advice was to eat and drink at normal times of the day to try and get some normality back. She said that if your going to have pain anyway you might as well eat something, even if it makes me sick. Not sure how that's going to pan out if I get back to uni? My challenge for the next two weeks is to eat a slice of toast, a yogurt and my supplements at 9 o'clock, have 50mls of soup and my supplements at lunch time and to have a teaspoon of everything that the family is having at tea time along with the supplements. Whoa man it sounds impossible right now! She said to just try and put up with the pain and do it anyway but I know I can't function when I have so much pain and there is no way I'm going to eat so much as to induce vomiting whilst I'm out in public. How embarrassing would that will be? Having to leave a full lecture hall in time to avoid vomiting on the person sat in front of me!!!  I will have a good crack at it whilst I'm at home over the next few weeks and see what happens. The thing that concerns me is that at the moment I have found my own balance. I have kept the weight on by listening to my body and taking the supplements when I know I can handle it. Why change something that is working for me? I worry that by trying to eat at meal times and increasing the amount I eat that the vomiting will start and I will lose the weight again. I can't drink enough fluids throughout the day to be able to afford to be loosing the little that has gone down, I'm permanently dehydrated as it is.
So I will make the most of my last few weeks off uni and do as I'm told, I really hope this doesn't set me back, but I will try anything to get my life back on track. I'll keep blogging over the next few weeks to let you all know how its going. Wish me luck!

I found this site today, please read it if you have time x

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

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Monday 14th March 2011

Well day one of the new regime....not so good! I have eaten a yogurt a muffin and a tiny piece of pizza today as agreed, but have suffered the consequences big time. I don't know if I can keep it up for 2 days never mind 2 weeks! I think I over did things at the weekend as I have been exhausted all day too. I did manage to do the shopping but I'm paying for it now. I wish there was an easy answer to all of this. After the initial relief of finding out what has caused the problem I am  now left with the realisation that their is no quick fix.
I had a phone call from the eating disorder nurse too. She rang to see how I was getting on and to let me know that they would be discharging me as of today. They have been so good to me over the last few months, they kept on seeing me even though there wasn't much they could do, they took the time to listen. They have been a big support to both me and my family. I hope that the health psychology people are just as good, it was nice having someone who took the time to find out how all this is effecting our lives.
Anyway time for some more tramadol nights, It's been a long day.

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Tuesday 15th March 2011

Day 2 of the new eating regime. Have found myself bed bound today, the pain is back and I can't face food today. It started up yesterday afternoon along with overwhelming tiredness. I have pushed down 2 ryvita this morning an a feeble attempt to stick to the plan and keep eating but they have only made it worse. I woke up with hiccups again so I guess that's 3 to 4 days of those too. Looks like it's going to be a hard couple of weeks for me. I will have to find the strength from somewhere and ride it out. I don't want to give up without a fight but today I'm on the loosing side. I'm going to spend the afternoon listening to my ipod and doing my deep breathing exercises to see if I can take control!

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Thursday17th March 2011

Day 3 of the eating challenge. Was in considerable pain for most of the day yesterday but managed to eat  a yogurt some biscuits and 1/2 a ham sandwich. I went to bed early with pain and achieved nothing all day. Have had to start taking the tramadol more regularly again so now I'm spaced out too. I think I will carry on till tomorrow and then have a weigh in. If I haven't gained any weight I will go back to my comfortable routine. At least that way I can say I gave it a real shot for a full week, I can't cope with being this ill. If they could just find something that works for the pain it would help!

I still haven't heard anything from London about the tests that I am due to have so will have to email them to find out what is happening. The consultant indicated that it would only be a few weeks. I kind of feel that I have been left to deal with this on my own again as I will not see my regular consultant until after the tests have been done so it could be moths before my next appointment.

I would just like to Thank everyone who continues to support my blog, I Couldn't get through the days without you guys!
For anyone who missed the announcement of the spoon theory, here it is again...please read it if you get the chance!

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
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Friday 18th March 2011

Well I've stopped this stupid eating regime today, I have been suffering all week as a consequence of this new diet. I gave it my best shot and that's all I can do. I didn't gain any weight, in fact I lost some!

I got my letter through from occupational health today, here it is,

Thank you for referring this lady to me.
As you already know, she had to take a leave of absence a year ago when she developed severe abdominal pain such that she was unable to eat and went on to develop severe weight loss. She was extensively investigated in xxxxx and then by two specialist physicians on London. The exact cause of her pain has not yet been determined but, in the course of her investigations, she was found to have an inherited connective tissue disorder which normally gives rise to various musculoskeletal and cutaneous problems but, in this case, it is thought that this may be responsible for her abdominal pain. Investigations are ongoing and it may be a while yet before a firm diagnosis emerges. As you also know, she had to be admitted to xxxx hospital for several weeks for nasogastric feeding, which has restored half of her weight loss.
 xxxx is very keen to return to the course in April and is concerned that this is probably going to be her last opportunity to do so.
xxxx undoubtedly has an underlying medical problem and I am sure that she will be covered by the provisions of the equality act 2010. However, there is currently insufficient information available to advise you whether it would be safe for her to return to the course. It is important to ensure that the inherent physical demands of the course do not prejudice her underlying problem in any significant way. xxxx has kindly given me consent to approach her treating physician for some crucial factual information which will help me to determine whether or not it is safe for her to return and, if so, to determine whether any specific adjustments are likely to be required.

So there it is, my future on a piece of paper. It's just a matter of waiting now, I wish my consultant had given me an answer when I asked him about this rather than changing the subject! I only wanted to know where I stood and, as it stands now I just don't know.

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21st March 2011

Right, this week I'm going to get things sorted out. I am chucking the eating plan in the bin and will continue to eat as able. I am going to the GP tomorrow to see if he can find out whats happening with the tests I'm waiting for. I have my health psychology appointment on Friday to fill them in on the failure of the eating regime. I wonder what the next step is?
 I'm also busy trying to get university organised, I have to re-apply for my bursary which will take weeks to come through so best do it now rather than waiting for occupational health to get back to me. I am determined that this is not going to stop me from fulfilling my dreams, it's my life and I want it back!

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Tuesday 22nd March 2011

A slow start to the day but I have gradually got through it and even managed to mop the floor! I spent most of the afternoon trying to find out what is happening with these tests. I want them out of the way so I can concentrate on getting better. So I popped down to see my GP who said he had received a letter from my consultant saying that they could not fit me in for the tests as he is too busy. This annoyed my GP somewhat as it was him who had asked for the referral to be done. My case has been transferred to another gastroenterologist working at the Royal London and I will be put on his waiting list. Great! just what I need.....another consultant! I have no idea how long it will be before we get this sorted out but it just goes to show that everything falls apart as soon as you try dealing with the NHS. It was nice of them to inform the patient huh.
On a brighter note my GP was in favour of me trying to get back to uni and advised some "light exercise" to build up the strength but to do no more than slow walking to avoid burning too many calories. Sounds promising that he may help swing my case with occy health if they ask him.  I will keep you posted of any new developments as they happen, if anyone has any feedback about my blog please leave your comments on the HOME page.

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Wednesday 23rd March 2011

Well today got off to a great start and then gradually descended into one of the worst days ever! I got my appointments through for the gastric emptying test and the small bowel manometry. I am going on the 19th and 20th of April so not too long to wait now. Isn't it typical that came through the day after I made a fuss about it lol. So initially I started the day feeling really possitive THEN I had a phone call from my personal supervisor at uni. She said that occupational health were struggling to get hold of my consultant (surprise surprise). they told her that, as it stands at the moment they don't think that I am well enough to continue on the course, unless the consultant drastically changes their minds. This leaves me in a massive dilemma because if they declare that I am not fit to practice I will be removed from the course and unable to re-apply. Or do I withdraw myself from the course which would mean I could re-apply in 2 years time. It would help if I knew what my consultant was going to say. I am due to start back on the 4th of April which is only ten days away and they will not hold the start date for a single day, if I don't return on that date I will be withdrawn. In addition to all this they said that if I do go back I would not be allowed to take even a single day off sick for the duration of the programme which is 2 years! I already need to take the 19th and 20th off for my tests so how would I get round that one? She then went on to say that even if occupational health agreed to let me return, they would not have time to make any reasonable adjustments for me in time for the 4th of April. If I was a student studying any other subject I could return without any problems but as it is a nursing course the NMC have very tight regulations. I think I will have to find some legal advice on what my rights are because at the moment I don't seem to have any! I can't believe how unflexible the whole system is, surely it must fall under some form of discrimination act? I am currently on the diploma course but they are moving all nursing courses to degree level next year so I would need to sit 2 A levels before I could even think about returning to my studies.
So once again my future is in someone else's hands and I have a huge decision to make, all offers of advice would be most appreciated please leave any comments on the HOME page. If anyone knows anything about the disability discrimination act I would love to hear from you. Please help me get my future back....I won't let this illness take my life away!

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Thursday 24th March 2011

I have spent the day trying to find out information about my rights as a student. I have spoken to the disability department at the students union and they have asked for some medical information. I have emailed everything I have including the holding letter from occupational health. They were very nice and explained that I would have to go to an assessment to be recognised by the university as having a disability. From then they would be able to recommend what adjustments I would need. I'm guessing that this is what my tutor was referring to when she said that there would not be time to organise things before I am due to return. Anyway, I've left it in their hands and they will get back to me next week to clarify exactly where I stand. I could really do without all this hassle when I'm trying to concentrate on getting better! Don't they realise that sometimes people just need a little bit of help to achieve what most people take for granted.

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Friday 25th March 2011

I've been to health psychology this morning and came out wishing I hadn't bothered. What a waste of energy! I discussed how bad the eating plan had been and that I had gone back to my usual diet of supplements after a week of agony. She said, well how do you expect to get back to uni if you don't eat? Well I just have to manage was my answer, I have kept the weight on by listening to my body and not allowing myself to get sick again. I also told her about the problems I'm having with the university and she suggested that I find something else to do. She told me that I see everything in black and white all the time and that if I have a plan B so I wont feel so disappointed if I don't get to go back into nursing. This is all well and good but nothing would ease the pain of being unable to fulfil my dreams! I told her that the only other thing that I want to do is to be a carer again but as it stands at the moment I am not physically able to do the job. She said I have to stop looking at everything in black and white and focus on the "grey' areas. But I don't want black, white or grey, I want a rainbow! She was a bit scary really and kept leaving long pauses and staring at me like I should know what the answer is. I think she believes that this is all in my head and only I can change it, but it's not, my pain and the vomiting is very very real and I think she should at least talk to the eating disorder team about my case, they know exactly what I'm going through. I don't really want to go back next time but I have no other options. I have tried just about everything else so far. I push myself to get up every day, even when I'm really bad, I try not to let it take over my life. I tell people I'm fine when I'm not and I keep quiet when people eat in front of me, when all I want to do is be normal like them. If I could physically eat any more than I am now then I would do it! I don't see how making me feel bad about it is going to help? I feel worse now than I did before I went, going to have to get the ipod out to de-stress a little before I tie myself up in knots with all the rubbish stuff that has happened this week.

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Trying to get on with things as best I can. I'm still really worried about what will happen with university this week, it's the last week before I am due to go back. So I will find out whether I get my chance or not. I am fearful that if I leave it too long they will withdraw me from the programme and I will be unable to re-apply so I need to pre-empt any decision they are likely to make and act first. I'm going to badger the disability people this week to make sure I stand the best chance of returning. I am also going to ring my consultant to get him to reply to the university as soon as he can, I also want him to give me an idea of what he is going to say to them. I have been very tired this weekend, I think it's all the worry. I just want to get my life back on track, it's hard enough being ill without people making it harder!

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Wednesday 30th March 2011

It's a conspiracy I'm sure of it! My life conspires to be one set back after another. I thought I would tackle the uni issue today...big mistake! I spoke to the lady that I was dealing with last week at the university disability department. Apparently because my surname starts with an R she had passed it on to her colleague so she put me straight through to her. Great I thought someone has done something. But no, apparently this lady has been off sick for a few days so she hasn't had chance to do anything yet! Oh my life, just what I need! So I then rang my personal supervisor, who said that there is not enough time now for me to do anything but withdraw from the course. They still haven't heard anything back from my consultant so have been unable to determine whether I am fit to return or not. In addition to this, if by some miracle they get the information, I would not be able to take any time off sick therefore unable to attend my two appointments in London on the 19th and 20th. My only option is to withdraw from the programme by way of damage limitation. At least then I could re-apply in two years time, but only if I did 2 A Levels in the mean time.
It certainly feels like life is out to get me at the moment. I have sent an email to citizens advice about the legality of all of this. I don't believe that anything can be done in time for me to change anything now though. I'm going to spend the afternoon draughting my withdrawal letter, it may take me some time...and lots of tissues! If anyone out there who reads my blog can help in any way please speak up...I don't bite lol

Update:

Well I spent the afternoon emailing like crazy. The disability people have told me that there is nothing they can do to help and that I should take the matter up with the student union welfare advisor. So I have spoken to her and she cant do anything more about it till late tomorrow afternoon as she has a meeting in the morning. (Great!) She is my last chance really but in all honesty I don't think she is going to be able to change the outcome of this one. The nursing and midwifery council have it all sewn up so tight that there doesn't appear to be any way that I can go back now. It's all too late in the day.
I have spoken to citizens advice about it too and am waiting for someone to get back to me tomorrow, but again it seems a pointless exercise and only serves to cause me more stress! I'm definately on the loosing team this time, how will I pick myself up from this one? I don't know.

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Thursday 31st March 2011

Well I finally bit the bullet today and formally withdrew from university. It took me over an hour to write 5 lines and a further 3 hours to finally send it! Nothing I can do about it now, it's gone and done with. It broke my heart to do it but it was the only option left to me. I now feel physically and emotionally drained  from putting all my energy into fighting a loosing battle. I can't look to the future  right now as I just don't know where I'm going anymore. All I can do now is put all my energy into getting better in the hope one day I will get the chance again.
Time to find some new music to get me over this one, any suggestions?

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Sunday 3rd April 2011

Well I've just been a total brain fart this last few days. I don't have much to say for myself at the moment but, what I will say is.......................I wish I was well.

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Saturday 9th April 2011

Sorry I haven't posted this week, I have been rather ill. The pain has been horrific at times and I'm struggling to keep even fluids down at the moment. My heart has started playing up again, the dizzy spells have returned and I have trouble standing up at times. It's exhausting! This thing is just relentless, I have worked really hard to maintain my weight since my last hospital stay and had even managed to put on half a kilogram ( doesn't sound much but to me it's massive!). And then in the space of a week I've lost 2 and a half. My mood hasn't helped the situation as you know, I have been through the mill a bit emotionally this last few weeks. I really don't want to go back down this road again, I've been there too many times now and am starting to wonder what long term effects this will have on my body. The weather is just starting to pick up too and I want to be able to enjoy the summer not waste it away in bed like last year. It's so frustrating I can't put it into words. I'm 29 going on 90 at the moment and it's just unbearable. Someone must be able to do something...I hope these tests hold the answer for me. However   I dare not raise my hopes though, my past experiences of extensive testing have taught me that much!
On a lighter note I would like to thank everyone who has been supporting my blogg, I know that I am now reaching fellow EDS sufferers and it means a lot to me that you guys are behind me. I would also like to say a massive thank you to Sharon for being the first person to offer her story, lets hope you will inspire others to do the same. I  have set up a page dedicated to your stories so take a look and feel free to send me yours!

E-mail natalie_roux@yahoo.com

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Wednesday 13th April 2011

Well no change as yet. I went back to the Drs on Monday and have started back on the Augmentin and VSL#3 in the hope that I pick up a bit before I go for the tests next week. I need to be able to eat something and keep it down for the test to work. At the moment I'm still struggling with fluids. So lets hope the antibiotics do the trick!!
I have taken up cross stitching this last few weeks, sounds really old fashioned but I have found that it takes my mind off things....mainly because I got the hardest possible one and I have never done it before lol. It takes a lot of concentration but it feels like I am achieving something even on the worst days. So I guess I am managing in my own way to adjust to making smaller goals for myself and take things day by day.

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Sunday 17th April 2011

Well getting ready for my tests in London this week. I'm going tomorrow so won't have to rush around on Tuesday morning. I have had to stop all my stomach meds since Friday in preparation for the tests so have been feeling pretty rubbish all weekend. Still no progress on the eating front either, but I suppose that won't change now till I'm back on my tablets again. Keep your fingers and toes crossed for me this week and I will post back as soon as I have any news for you x

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Thursday 21st April 2011

I'm back!  I Went to the Royal London hospital on Tuesday for the placement of the recording device for the small bowel manometry. It was very much like having the nasogastric tube to begin with but they had problems guiding the sensor into the right place. But as usual for me things didn't go quite according to plan, the first tube broke so they had to start again which was the last thing I needed! They used x-rays to guide the tube but really struggled to get it through the stomach and eventually told me they would only be able to have one more go because of the radiation. By this time it was really hurting but I stayed calm and persevered with it and finally they managed it. The Dr even said to me that HE would have been screaming. So, it took a lot longer than expected but we got there eventually. They wired me up to a portable monitor which I could carry in a bag over my shoulder.  I had to record any symptoms I was having on a time sheet along with what I was eating and drinking ( which I explained would be mostly supplement feed).
 I looked like a hospital escapee for the day but it was ok, I'm passed caring what I look like, I just want them to find out what's wrong.The Dr's were lovely and seemed to totally understand the kind of problems I was having, they were extremely efficient and most of all...nice! It is such a contrast to the care I have received locally.
 I had to go back at 9:00am the following morning to have the tubes removed. They said that I should expect the results in about 4 weeks time. I then had to go for the gastric emptying test in another part of the hospital campus. We were taken to a small room where we sat for four and half hours. I had to eat an egg sandwich, which was a huge challenge in itself! It was made with fried powdered egg and some kind of tracing agent on semi toasted dry bread....not the easiest thing to get down when you haven't eaten solid food for a year! I was in tears trying to force it down but knew I had to eat it all for the test to work. I then had to blow into bags every 15 minutes for 2 hours and then every half an hour for 2 hours. This should show if the food had passed through the stomach within the normal cycle of digestion which should be 4 hours.
It was a long long day but it's all over now! I should get the results in roughly 2 weeks for the gastric emptying test so not so long to wait for that one. I'm really glad to be home now and had two very happy children and hubby waiting for me when I got home. Have had lots of cuddles and now I'm going to have a bath and forget about hospitals for a while!

Here is a photo of the recording device:


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Tuesday 10th May 2011

Hey guys! So sorry I haven't posted recently, things have been much the same for me this last few weeks. I am really tired and just couldn't focus long enough to write anything that made sense. I have got my appointment arranged for my test results on the 25th of May so won't have any news for you till then.  
I went to health psychology last week and still fail to see how any of it is going to help me. We spent most of the session talking about how I am going to get back to work. My guess is that she thinks that it will provide a distraction to the pain but it doesn't address the fact that I can't eat enough to sustain any level of activity for very long. I am confused as to where this is going but will stick with it. It's a good job I'm a naturally patient person.

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Thursday 19th May 2011

Again apologies for not posting much recently, we had a family emergency last week and I have been holding the fort whilst my mum was away. I have been coping day to day but the extra exercise has resulted in more weight loss. My reason for posting today is that I received a letter from my London consultant today with the results of the gastric emptying test. It reads as follows:

This lady had a 13c Octanoic Acid breath test for gastric emptying and this has shown extremely delayed gastric emptying with a T (lag) time of 162 minutes, normal less than 100 and T (1/2) of 227 minutes with a normal range of less than 135. The patient is currently awaiting her small bowel manometry studies and I will write to you with the results as soon as they are available.

WOW! I could not believe my eyes! Finally we know something about what's going on. I had convinced myself that they would find nothing on the tests as so many Drs have pushed me away. I can't tell you what a relief it is to finally get some answers. It also means that there is a possibility that something can be done to improve this condition and get my life back on track!
It will be an interesting visit to my regular consultant next time as he has done nothing but stall the gastric emptying study from the start which is why I had to pay to see someone privately. I'm not going to let him off the hook lightly for this one! It's a surreal feeling really as I feel both delighted and furious at the same time. The gastric emptying test was first mentioned in June 2010  by my regular consultant but for some reason he did not do anything about organising it, even after my most recent hospital admission, where they told me it had been booked at Leeds. This never happened! Instead it has taken 10 months, 3 gastroenterologists and one neurogastroenterologist to organise a test which should have been at the top of the list. Not to mention the financial and emotional cost.

However....today is a good day, I can stop questioning myself and wondering if it really is all in my head, It's not...it's real and now I can prove it....and look to the future!!!!

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Tuesday 24th May 2011

Well tomorrow is the big day. I have spoken to my consultants secretary this morning and they have got the results back for the small bowel manometry too. So, tomorrow will be an interesting day, I really hope it's good news! We have had so much to cope with as a family over the last 5 years I think we deserve a bit of luck.
I took my daughter for her paediatrics appointment yesterday and have finally made some progress for her too. In light of my recent diagnosis of EDS and gastroparesis they have agreed that they may need to investigate her problems further too. It has taken 9 years for me to get someone to take her problem seriously so I'm relieved that she is now moving closer to getting the help she needs. They are going to discuss it with the surgical team and see if she needs any tests. It's a worry when it's your kids, I just want the best for her and feel so sad that she has had to cope with so much so young.

Anyway... I will post as soon as I have any news for you, wish me luck!

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Thursday 26th May 2011

Phew...that was an exhausting trip to London. I think I could sleep for a week given half the chance. We saw the consultant on Wednesday evening. The results of the small bowel manometry were clear, so I can stop worrying and concentrate on getting my stomach to behave itself! We went over what had been happening since the last time I saw him, I explained that the antibiotics (Augmentin) and probiotics (VSL#3) have helped significantly with the gripping pain I had been suffering with, but the effects only last up to three weeks following completion of the course. He recommended that I start taking Erythromycin which is another antibiotic that also has a prokinetic effect on the stomach (stimulates movement). The plan being that I should start on a low dose and gradually build up to the higher dose over a few months, this is a long term antibiotic rather than a short course. Along side this I am to take regular courses of Augmentin followed by six week courses of VSL#3. He did say that the Erythromycin may kill the good bacteria from the probiotics along with the bad bacteria it is targeted at, so it may take some adjustments to establish the right timing for each stage of the cycle. This is by no means an exact science, it's just a process of trial and error, so he went on to say that if the Erythromycin doesn't help then there is another drug we can try as plan B...but I can't for the life of me remember what it was called!
So I may have a firm diagnosis now but it doesn't really change anything in terms of treatment. There is no quick fix option. I have been taking the recommended treatment for this for a long time now and very little has helped so far. My new medication list is as follows:
Omeprazole           1xday    
Metoclopromide    3xday    
Ondansetron          3xday    
Mirtazipine            1xday  
Olansapine            1xday    
Erythromycin        3xday    
Augmentin            3xday  Ten day course
VSL#3                  1xday 6 week course
Tramadol              4xday as needed    
Docusate              3xday as needed    
Movicol               3xday as needed      
Calogen               3x30ml day
Fortisip                As tolerated

We had a breakthrough with the Augmentin with regards to pain but it had little effect on my food tolerance. I now weigh in at 48kg (7st 7lb) which means I have lost 5kg from my target weight of 53kg giving me a BMI of 18. Not too bad at the moment but I seriously can't afford to lose any more! He was concerned about this and said he would request a new referral back to the dietician....here we go again! Back on the same old roller coaster ride, lets hope that the new medication is effective and I can avoid the dreaded PEG.
When I returned home this afternoon I received an appointment to go and see my regular consultant. He was sent a copy of the test results last week which must be what prompted the appointment....imagine my reaction when I saw that it is for NOVEMBER!.....Speechless!...really is he for real? He said he would wait until after the tests to see me again but six months after your test results is totally unacceptable! I only have a treatment plan because I have paid for it! It is just infuriating especially when you consider that before I got sick I worked my butt off for the NHS, in particular the very same hospital which is supposed to be caring for me!
 I have my appointment with health psychology tomorrow so I am going to use my time  to vent some of my frustration with the whole situation because I think I will just explode if I don't get it off my chest. I am going to take in all the correspondence I have from the specialists I have seen. I think it will help her get a better idea just how much of a juggling act this really is. Maybe then we can start to set more achievable goals.
I could go on rambling for hours but I really really need to sleep....will post tomorrow after my appointment xxx

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Sunday 29th May 2011

Have had a really bad day today, I tried to eat too much yesterday to compensate for my recent weight loss and suffered the consequences BIG time. I was sick shortly after getting up and have had severe abdominal pain all day. Must be time for another course of Augmentin but as per usual it's a bank holiday and the surgery is shut till Tuesday...isn't that always the case!
I had my appointment with health psychology on Friday. I think we made a bit of a breakthrough this time round. I explained my recent test results and how I felt about the prospect of learning to live with long term illness. She agreed that we had got off to a difficult start as so much was happening in my life when we first started the sessions. She also agreed that some of the targets that she had set were a little ambitious considering the constraints of my physical state. What worries me now is, because this has now been proven to be a physical problem she is unsure of how much I will benefit from health psychology. My response was that they may not be able to alleviate my symptoms but I do need support with the emotional aspect of being ill and all that entails. It is the hardest thing in the world to lose your good health at such an early age. I need to be able to talk to someone other than family or friends because to be honest about how I feel sometimes would only cause worry and hurt. We agreed to carry on and see how things go so I will see her again in 3 weeks time. My target for the next session is to be more selfish and put myself first for the time being, and learn to pace myself a little. Write a list of fun things that I would like to do and get the family to do the same. Then we can go through the list and look for the things that might be achievable for us at the moment. Keep pushing with the diet but stick to liquids/purees. Sounds a bit more realistic than the last set of goals I had and it gives me something nice to focus on for a change. I am going to have to stop trying to be superwoman if I don't want to loose any more weight so time to stop pretending that I can manage to do it all regardless and think about the consequences of doing too much.

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Friday 3rd June 2011

Another day, another trip to the GP. I got called in because they had received a letter from my local consultant. He had written to ask them to start me on the Erythromycin in light of my recent test results so at least he is working on the same page as my specialist now. I explained that I didn't have another appointment until November and that the specialist was concerned about my recent weight loss and had been keen to get the dieticians involved again. So she is going to write to my consultant about it and see what comes back. So day one of my new meds...fingers crossed everyone!
Here is a copy of the letter from my consultant...

I have now had a report from xxx in London about xxx recent test, which suggests slow gastric emptying. This of course will explain a lot of her symptoms and is part of the spectrum of motility disorders which was the primary diagnosis all along. It can be an isolated phenomenon but can also be secondary to stress in a stomach that has the potential to return to normal and I think the jury would be out about which of these two options applies.
In terms of treatment, things may have already been instituted by xxx or yourself but, if not, the two standard treatment options are a prokinetic, either Domperidone or Methochlopramide which may need to be in higher than usual doses (such as up to 20mg 4 x a day) or Erythromycin in small and regular doses initially at 125mg 4 x a day.
For delayed gastric emptying problems that are not due to a reversible problem such as temporary stress, infection etc there are some rather older surgical options or some rather experimental options of using electrical impulses to try and stimulate the stomach a bit analogy to a cardiac pacemaker, however, these are not, to my knowledge, routinely available yet but if xxx problems persist we could research this.
I look forward to further advice from xxx and his team and to seeing xxx in my own outpatient clinic in due course.

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Saturday 4th June 2011

Got my letter from my London consultant this morning so thought I would share it with you...I think you will see what a difference it makes when a consultant sees his patient...

I reviewed xxx in clinic today and went through the results of her recent physiological tests, which have shown severely delayed gastric emptying, but normal small bowel manometry.
I was very interested to learn that xxx found treatment with Augmentin quite helpful for her abdominal pain and effects seem to last maximally for about 3 weeks and then gradually her abdominal pain starts to recur and she has taken a couple of courses of Augmentin so far and they seem to work each time. This does suggest that there is an element of bacterial overgrowth, which improves with the Augmentin, however this is not really influencing her gastric emptying and hence she continues to complain of postprandial early satiety.
xxx was somewhat concerned about the fact that the early satiety is increased somewhat recently and she has not been able to eat and drink normally and has lost about 3kg in weight in the last few months.
I have today made the following recommendations:

1) A trial with Erythroycin starting with 62.5mg paediatric suspension 3 x a day before her main meals. The dose can then be gradually increased to 125mg 3 x a day and then finally 250mg 3 x a day at weekly intervals if necessary. Erythromycin is a good prokinetic and has efficacy in gastroparesis. I note that previously xxx has not responded to Domperidone and Metochlopramide.

2) Erythromycin unfortunately is not the first line drug for the management of small bowel bacterial overgrowth and she therefore may intermittently still need the courses of Augmentin if abdominal pain remains an issue. She can continue to take VSL#3 in between courses of Augmentin.

3) I am copying a letter to xxx(local consultant) with a request to arrange dietetic review for her, in light of finding gastroparesis, as she would benefit from seeing a senior dietician who is experienced in managing such patients. I would recommend a soft diet which is low in fat and have advised her to take small frequent meals throughout the day.

If the above strategy does not work then we may have to consider trying a new prokinetic called Plucalopride which is a 5HT4 receptor agonist.

I will review xxx in a couple of months.

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Wednesday 8th June 2011

Day 5 of the new meds...not going so well yet, thought it would help me to eat more but so far no joy. I tried to increase my intake this week but only served to make myself ill again. I will be increasing the dose at the end of the week so hopefully once I am on the full dose things will start to happen. It won't be a moment too soon either, as my weight has dropped again. I am now 47kg (7st 5lb), which means that I have now officially lost 6 of the 10kg that I put on in hospital over christmas. I am starting to look like skeletor again and hate the way people look at me sometimes. This whole thing is just so frustrating, I wish there was something I could do to make it go away, I don't want to miss out on any more living! I used to have a life....now I have pills instead!

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Friday 10th June 2011

Had a really bad night last night and was forced to max out on pain killers. It is rare for me to let it get on top of me these days but it definitely beat me last night. It amazes me how quickly it takes hold and the depression sets in. It was a very long and lonely night, until I finally drifted off to sleep at around 3am.
 I woke up this morning feeling sick and totally exhausted. I'm not sure if it is a flare up, or side effects from my new medication. I have felt progressively worse as the week has gone on and am now unsure whether I should increase the dose today as planned or to leave it as it is and see what happens. If it is the medication then maybe I just need more time to adjust to it. The only other thing I can think of that may have triggered it, is the fact I have been trying to eat more with my new meds. I had been struggling all day but, I'm always aware that by not eating I'm starving to death, so I had a small tablespoon of mashed potato and swede at around 6pm and never recovered from that point on. It sounds awful to say this and I don't say it lightly but I wouldn't have cared if I had died last night.
 I could really do without this right now as I can see the spiral of weight loss speeding up and I can't seem to get control of my symptoms. The more weight I lose the worse I feel and the more I eat the more  I get sick. I fear that I have lost control again and that's when the real problems start. Please please please can someone fix my broken body!

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Sunday 12th June 2011

Oh dear...it looks like this is the start of the hospital cycle again. I have been getting progressively worse all weekend. My energy is at an all time low and my stomach is fighting with me so much I can't keep anything down. It's so bad that when my daughter gave me a hug earlier today, I had to stop myself from vomiting on her. Even the slightest pressure on my abdomen is unbearable. I have the runs this time round too, just to add a new problem to the mix! The tramadol isn't helping with the pain much but it does help me to sleep a little. I'll have to get to the Drs again tomorrow and sort myself out. I am still taking the erythromycin but have not increased the dose as I don't know if it is that or another bacterial infection which is causing the problem. The timing is about right for another course of antibiotics which is why I can't just presume that it is the new meds. Needless to say that my weight has also taken a battering and is steadily declining all the time. The fainting has also returned but thankfully, as yet, I have managed to avoid serious injury. I put myself on bed rest for 24hrs on friday and slept right through to 12:00 on saturday. I must have really needed it! I have managed to stay on two feet since then so will put it down to exhaustion. The family is starting to get stressed again, I can always tell by their behaviour...and I don't just mean the kids! Whilst they don't suffer the symptoms they all suffer the consequences and it makes life tough when mummy can't be mummy.
Going to rest now, I'll post as soon as I can with an update x

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Thursday 16th June 2011
45kg

Well, so much for staying on two feet! I am now too weak to get out of bed and in far too much pain to even try. I went to the Dr's on tuesday feeling very shaky and out of breath. She gave me some augmentin and said to call her out if I got any worse during the day. Again she offered nothing for the pain, but advised me to take regular paracetamol....huh??? ...if the tramadol ain't shifting it then I dont know what good the paracetamol would do! My pulse was fast but BP was ok for me...never goes much above 100 systolic anyway. I took myself home in the hope that the antibiotics would do the trick. When I woke the next morning the pain was unbearable and I couldn't take my pills because of the persitant vomiting, so we called the Dr out.  He rang first to see what the problem was so that he could bring the correct medications with him. When he arrived he said I was dehydrated, which in turn makes the nausea worse. He gave me an injection of metachlopromide and something else...I really wasn't with it enough to care. Then gave me some stemetil to put between my gum and my teeth in an hours time. He said that once they had started to take effect then I should be able to drink a little and manage my tablets. My husband was quite distressed seeing me like that and he asked if he thought I should really be in hospital. The dr replied that he thought it best if we try and manage things at home for now as the situation wasn't critical but did say that it would be wise to start thinking about it for nutritional purposes. It was a bit weird actually as my hubby said, well I think we are already at the point where nutrition is a problem. To which the Dr added, well that has to be xxx's decision. He made it sound like I had refused the feeding or something...so I said in no uncertain terms..., " I have no problem with being fed etc but what I don't want, is to spend weeks on end in hospital to achieve it, I want to be in my own bed with my family around me". He seemed to acknowledge what I was saying and said that we should discuss it in more detail when i'm a little stronger.
I did feel a little better towards the evening yesterday and managed to keep my night time meds down...such a relief! The pain was still ferocious though!...forgot to mention that he didn't give me anything for the pain either! They know that Tramadol doesn't work on the epigastric pain, so why have they never changed it?
Anyway...I didn't get up this morning, because I couldn't. So I lay in bed listening to my hubby struggling to get the kids ready for school...and some crisis over shoes lol. I felt so guilty leaving him to it but really I had no choice, it's hard enough getting across the hall to the bathroom, never mind down stairs!
  I was unable to keep the meds down so have taken the stemetil again this morning. I feel less sick now but it hurts like hell. Imagine having the worst case of food poisoning for a year and a half...that's what the pain is like! And the more I vomit the more it hurts. I don't think I will be at home for much longer but I promise I will do my best to keep you up to date. I have a dongle to use if I do go into hospital but it depends how I feel as to when you will get an update.

Love you guys xxx

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Saturday 18th June 2011
44.5kg

You will be pleased to hear that things have improved a little since my last blog. I'm still very ill but at least I'm not being sick every 10 minutes now. I am still in a lot of pain and can't keep food down but I have managed to drink a little. It's a horrible feeling knowing that you are dehydrated and REALLY thirsty but unable to drink enough at any one time to satisfy the urge to drink. It's like mental torture! As for food, I thought I would try and have something to eat last night but that was a really BAD idea. I was awake and in pain until 3:30am only to wake up still feeling sick and sore at 5:30 this morning. There is nothing worse than being in pain at night...it feels like the whole world is asleep except you, and there is simply no distraction from the pain.
 Even though I had such a bad night I managed to get up and dressed for the first time this week! However I believe it was pure stubbornness that got me up...my daughter had a riding lesson and I wanted to watch her! She loves me to see her doing something she's good at and I just couldn't break her heart again, so ignoring my body...off I went! I got a few funny looks whilst I was there as I really do look like a skeleton now. I hate it because I know they are thinking that it's anorexia or something like that, so there is always an air of disapproval on peoples faces. It would be nice if people didn't judge you by the way you look, but that is the way of the world eh!
Any how, after my little adventure I came home and flaked out in bed again for a few hours...I feel like i've run a marathon today. I'm hoping tonight will be better.

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Monday 20th June 2011

Things are much the same here. I have been to the Drs this morning and he took some bloods for me. We talked about the problems I have had with my local consultant and he said that perhaps his attitude comes from the feeling of helplessness as nothing seems to be working for me. To which I replied, that if that is how he feels then he should just come out and say it and not fob me off with an 8 month review! He is very concerned about my weight now and is going to contact the consultant for me and see if he can get things moving again. He gave me another prescription for the stemetil and has increased the dose of metaclopromide to 20mg 4 x a day.
We talked about the PEG and I told him that it feels like I am giving in if I go ahead with it, and he totally understood where I was coming from. He followed up by saying, "well you are going to need something to keep you alive until we find a treatment that works for you." I could tell that he was upset that things had got to this stage and I know he wouldn't say something like that lightly. I know that I don't have long now before things start to get really dangerous so I guess this is it...I've finally lost the battle and will end up being shackled to a feeding pump for the foreseeable future. I suppose I will just have to learn to live with it and hope that one day they do actually find something that works for me! Life isn't life at the moment it's just one symptom after another, one consultation to the next.
I have to go back and see him again on thursday morning, I'll try and keep you up to date as much as I am able to.

Thought I would be brave and show you what I look like these days x



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Thursday 23rd June 2011

Not much change to report I'm afraid. I'm still stuck in bed with bouts of nausea and pain when I put anything in my stomach. My mum drove me to the Drs this morning for my appointment and she came in to try and sort something out for me. My blood results were within safe limits so that's one piece of good news! We discussed all the problems that we had faced over the last year or so, including the way I have been treated by certain members of the medical profession. We talked about the lack of input from dieticians and the poor communication we have experienced. We have asked for him to have a look for a team that would be willing to take me on, who will work together with myself and my GP to help me get better! So far we have found nothing but obstacles in our way. I feel like I have had to fight for a diagnosis and I've had to fight to be treated like a human being at times....I have been judged and criticised, I've even been called a liar, but yet I have to go back again and again to those same people, because I have no choice,  because I need help.
I am not a statistic on a piece of paper, I'm an individual with individual needs.

I hope and pray that we find someone who cares very very soon. I'm tired of it all.

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Monday 27th June 2011

I fell asleep on Friday morning just after the kids went off to school, I slept right through to Saturday morning without waking. When I did wake up it took quite some time for my hubby to explain that It was indeed Saturday and he thought I must have needed the rest!
I felt so guilty for sleeping for so long that I really overdid things at the weekend. I knew I needed to be in bed, but I still want to have a life. So I stayed up all day on Sunday and watched the kids for a few hours so my hubby could have a break! It was really tough and I felt so drained by 3 o'clock I thought I was going to pass out again. Yet still I stayed up, made their tea and tucked them into bed. It felt nice to do something normal but it was far too much and I should know better by now. I went to have a rest on the bed just after the kids had gone down. I fell asleep fully clothed on top of the covers within 30 seconds flat! I woke up at 5:00am in exactly the same place, still in my jeans and top. Hubby was snoring peacefully in the bed all cosy and warm. When he woke me this morning he said that he had tried several times to wake me up but he couldn't, so thought it best to leave me alone. I think he's scared that I might break if he shakes me too hard.
At least during the marathon sleeping sessions I'm not even aware that I exist so pain and nausea aren't an issue! It does mean that I have missed several doses of my meds, not to mention nutrition and fluids.
I have no energy to even "potter" today so I'm sat in bed staring out at the sunshine......wishing x

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Tuesday 28th June 2011

Hey guys! I'm sorry for all the doom and gloom lately, by blog sounds like one big moan! I'm still struggling with my diet and fluids but have managed to drink enough to make myself feel a little more human!

I forgot to mention that when I went to the GP last week he increased my metaclopromide to 2 tablets four times a day instead of 1 tablet three times a day. He has also started me back on the erythromycin again but this time we are taking it in baby steps. I am to take 1ml twice a day for 3 days and then increase to 2.5ml twice a day and then 2.5ml three times a day as tolerated. So far I have coped with the 1ml dose ok. I started the first stage of the 2.5ml this morning. Although I have managed to drink a bit more, it still causes a lot of pain and discomfort, so sipping here and there is the best I can do.

My mum emailed my london consultant last week, I got a phone call from his secretary at 8:00am this morning to say that she had received the message and if I needed to see him sooner they would try and fit me in. I don't want to change my booking now because I have already paid for the train tickets. She also said that he had suggested that we try getting in touch with a GI consultant in Durham who he knows, as an alternative to making more trips to london.

I also went to see my GP this morning for my weigh in. Amazingly I have managed to stay the same weight this week! This is great news and holds some big decisions at bay for a little while longer. We asked if he had managed to find a GI team in our area but he said he was having difficulty getting hold of  the team at my next nearest hospital. We specifically said that we didn't just want to go to the next nearest hospital, we want to go to the right one with the right people to treat me. We then gave him the name of the consultant in Durham. He said he would try and contact them asap. He rang me this afternoon to tell me that he had spoken to them and they would be happy to take me on!  So he is writing the referral today and then I will have to wait for them to get back to me. Finally I can get away from that awful consultant who I have had to put up with for so long!

 He has given me a new prescription for pain meds today too. I don't have them yet but they are supposed to help with abdominal cramping etc. This is the last step before opiates so I REALLY hope they work! Just the word opiates terrifies me! I don't want to spend my life on max strength pain killers, but I DO want to be able to EAT and DRINK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I hate feeling like this, I have always been a very independent person and  I like to challenge myself, but this whole experience has just been too much. I feel like a frightened child and all the grown ups keep arguing over my head. I find it hard to stand up for myself and feel very vulnerable right now, which just infuriates me! Before I got sick I thought I could handle anything life threw at me, I didn't need anyone to fight my battles for me, I was perfectly capable of addressing such matters successfully myself!  Yet now...life is different, I am different, and I don't like it!

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Thursday 30th June 2011

Woke up this morning feeling ok. So I took the opportunity to nip out and collect my prescription. By the time I got there I was feeling tired and a little dizzy. By the time I got home I knew I just had to lie down. So I took all my pills and climbed into bed. I managed 15 minutes...and the tablets came back. That is the worst possible time to be sick, they really burn on the way back up. It took a good hour for me to be able to stop for long enough to move away from the bathroom to get the stemetil to make it stop. Now I am back in the dilemma of not being able to take anything else till my next dose, as I don't know how much was absorbed. So....another fun filled day of pain and starvation....just for a change!

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Friday 1st July 2011

Firstly I would like to say a massive thank you to all my readers...I have had a little over 1,000 hits since the 1st of June! Lets hope that we can keep it up and get some more people to share their own experiences and make this page something special. If anyone has come across any new articles on Gastroparesis or EDS please feel free to let me know, I will gladly post links for you! Likewise if you have any suggestions on how I can improve this page for you please don't hesitate to contact me.

As for todays blog...it's not so good. I really struggled to get control of the vomiting yesterday.  I took my friends advice and tried taking the stemetil and then waited 20 minutes and took the ondansetron, waited another 20 minutes and took the rest of my meds.....10 minutes later I was having to change the bed because I missed the sick bowl! Maybe I shouldn't have pushed it and tried taking my pills with the fortisip? Thankfully I was more successful with my evening medications and they stayed down. I managed a half decent nights sleep, only waking twice during the night.

As for today? I woke up feeling sick...just for a change. I managed to keep my meds down with my staggered strategy but the pain from yesterdays stomach somersaults has taken its toll. I have been in so much pain today that I literally ran out of tears. I have started a new anti spasmodic medication called Alverine citrate (Spasmonal) but it certainly hasn't helped me today. I am hoping that it has a "build up" effect and will work better once I've been taking it a little while. I really can't cope with another day like today...I just can't bear it any longer!

With it being Friday I won't be able to see the Dr till Monday so I rang up and got some telephone advice. She told me to reduce the erythromycin back down to 1ml doses. We think that this is the route of the problem but I need to keep persevering with it to try and increase my tolerance. I was not sick on the 1ml doses so we will stick with that for now!

If anyone has ANY advice please please let me know!

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Monday 4th July 2011

Happy 4th of July to all my friends across the pond!

You will be pleased to hear that the vomiting settled down over the weekend....phew! I am still totally exhausted and very sore but to be free from the sickness is a mega relief!!! I'm back on 1ml doses of erythromycin and things are much improved. I have also started back on the VSL#3 (probiotic) today and hope it will help some of the cramping.

My mum rang the team at Durham today and managed to get the consultant to actually ring her back! I nearly fell over when she told me lol.  Apparently they mostly do research into motility disorders and thus he does not cover the wards. He said that he would be quite happy to try and work with my GP and the consultant at a nearer hospital in the near future. He thought it would be a little pointless to see me in an outpatients appointment as there are too many pressing issues to deal with. So he suggested that I go to Durham as an inpatient for a couple of weeks for assessment by his gastric team. He said that they would definitely put something in place to improve my nutritional status when I'm there too (so I won't look like skeletor for too much longer!). Apparently he took all my history from my mum, right from childhood so he will know chapter and verse by now lol. The most interesting thing of all? He asked if I was hypermobile....now I know I've found the right team!!! So much for my ex consultant who just laughed!

I don't know how long I will be waiting to hear from them but he gave us his phone number and email address just in case...how refreshing is that?

So the beginning of a new chapter...and it IS going to be better than the last one!!!!!

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Thursday 7th July 2011

Well...we have progress! I will be going into hospital early next week. I'm very nervous but at the same time hopeful that we can move forward and get something in place to improve my current quality of life. At the moment I'm spending most of my time in bed because I just haven't got the energy for anything else. So ANYTHING would be an improvement to that! I have cancelled my appointment in London as I think I will still be in Durham. If the team is as good as I am led to believe then I may not have to go back to London again. I know that the two consultants know each other and that they would be willing to share information with each other to try and find a solution that works for me. A major improvement to my original gastroenterologist who thought he knew it all and didn't like someone else telling him what to do!

I feel really sorry for my hubby at the moment as both our parents will be away whilst I'm in, so he will be totally on his own with the kids whilst trying to juggle visiting times etc. I've told him not to worry about coming too much but I think my little girl needs to see that I'm ok, so he may have to visit more to reassure her. She is very sensitive and misses me terribly when I'm away. We will just have to see how it goes but I know it's going to be tough on them. Even though I'm not able to help around the house these days, just being here is enough to stop world war three sometimes! The children are used to coming home from school and climbing into bed with me before tea. I will miss that immensely!

Anyhow, I know I have to do this to get better so time to shut up and get on with it! Whatever happens, happens...wish me luck!

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Friday 8th July 2011

I think I have finally got over the erythromycin disaster today! I am currently taking 1ml (roughly 31mg) twice a day and have been tolerating that without inducing the vomiting. I have been taking the probiotics for a few days now too and I do think they help to settle things a little. I'm still getting a lot of pain at times but I can cope with it better when I don't have the sickness making it worse.

I have even managed to get out of the house on my own today...even if it was only for another appointment lol. I went to health psychology which is about a 20 minute drive from where I live...that is, if you drive at the speed of traffic...it took me somewhat longer to get there because I was driving so slowly but I got there in one piece and only caused minor annoyance to everyone else on the road lol. I can't say the same for the car park though....yes...you guessed it...I pranged the car trying to get out of my parking space! Some idiot with a flatbed trailer had parked next to me and there was a long piece of metal overhanging the back end, so when I went to maneuver, I caught my wing on it ...hmmm not a happy bunny!!! Luckily hubs has many talents and has managed to knock the dent out for me and now it just needs a touch of paint...yes he grumbled a bucket full at me like most men...women drivers etc...just what I needed when I already felt like a prize pillock! Anyhow, he has since calmed down and all is forgiven lol. Poor thing just keeps getting more jobs on his list!

As for the appointment? Well, I apologised for missing my last one but that I had been very unwell over the last two weeks. I explained that I would be going into hospital for assessment next week and that I have been pretty much confined to bed as a result of the weight loss. She said that as things stand at the moment she doesn't think that I am getting any benefit from going to see her because I am not well enough to set achievable goals. So...I have been discharged for now but I have to ring them when things have stabilised and I'm ready to try again. This confuses me a little as I thought that they were supposed to help me to deal with all these big decisions that need to be made? Would that fall under the remit of a psychologist rather than health psychology...I don't know but it seems strange to remove the support at a time when I need it the most. I don't need them to set goals etc I just need someone to talk to. Thank heavens for blogging eh....you guys get it all instead lol. So in effect, I wasted a ton of calories and pranged the car for a 20 minute chat that will make no difference to my health whatsoever...perfect! To rub salt into the wound hubs had already told me to cancel the appointment because he thinks it's all a waste of time lol....he made a point of saying I told you so, but it did make me laugh! Next time I'll just listen to him, it's easier that way...he does have a habit of being right MOST of the time lol.

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Tuesday 12th July 2011



Well, I’m finally back in hospital after a very long day of waiting around for the phone to ring yesterday. I met my new consultant for the first time this morning and he is amazing!

Unfortunately I was busy throwing up when he arrived but he just sat on the bed next to me and rubbed my back until it stopped…how sweet is that? My last consultant would have just walked away!
He wanted to discuss the way I had been treated by my other consultant and the staff at my last hospital. He was not at all surprised that I had been through such a tough time and wanted to reassure me that my pain IS real. He went on to say that Drs often behave like this when they don’t really know what to do with a patient and have little knowledge into the pathogenesis of the illness. Ie…if they can’t find a reason for the problem, it MUST be all in your head! He went to great lengths to ensure that I knew exactly what was happening including showing me a powerpoint presentation on the route cause of visceral hypersensitivity (sensitive stomach). Apparently we release a chemical into the body when we eat and its job is to provide the right level of discomfort for your body to know you have had enough to eat. In my case he thinks that I am releasing far too much of this chemical which is why even a few mouthfuls hurt so much. He is very keen for my family to come in so he can explain it all to them too.
 I have already had an abdominal xray this morning and have started a 3 day course of pills for my next test towards the end of the week. They contain tiny little white rings, which will show up on the scan and provide an overview of where they have got to in my system over the 3 days.  If they get stuck anywhere it will indicate where the problem is . I will also be going to another hospital in teeside once I get out of here for a capsule endoscopy. You basically swallow an electronic sensor that is shaped like a pill. This records the activity of the gut, and eventually passes through the other end, (I hope I don’t have to fish it out lol).  He is also thinking of doing a full thickness biopsy for diagnostic purposes but went on to say that  there are significant risks attached to a procedure like that and the recovery can be very difficult. What ever he decide I know it will be the right thing for me…which is something I could not say a few months ago! I don’t feel like I need to get on the internet and find out about all these procedures because he actually took the time to explain them to me properly.

I am nil by mouth for the rest of the week because they have had to stop my pain meds because they slow down the gut motility. I said I would be ok with that as long as I didn’t have to eat and drink in the mean time. So I’m currently waiting for some IV fluids and can have a real break from the food issue! He is also going to stop some of my other medications, especially the metoclopramide as this can cause irreversible ticks (which I have been getting for a while now). It obviously isn’t helping me as I am still vomiting.

This afternoon I met the gastroenterologist who looks after the ward (my consultant doesn’t normally have inpatients) and he told me that they would be aiming to pace an NJ tube (like an NG but is goes through the stomach and into the bowel) to see how well I tolerate it. They plan to do this on Friday after I have had my other tests but if they are too busy it will have to be done on Tuesday next week. They want to see how I get on with it to find out if a permanent PEJ tube would be a good solution for my weight loss. He said they would take it very slowly and there is no rush to put weight on as long as I’m getting some nutrition.

So that’s the plan…Yes we finally have one lol.

I will post again as soon as I have any news for you…love you guys xxx

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Thursday 14th July 2011

Well a lot has happened since my last blog, I have 2 tests every day so far! First I had a test which involved sitting between two xray boards while someone spoon fed me scrambled egg and toast (with a tracing agent in) they took a series of pictures while I was eating to see what happens when I eat. It took about two hours to do the whole thing and it left me in quite a bit of pain afterwards. Then they were supposed to be doing a breath test to check for bacterial overgrowth too but they couldn’t do it because I have only just finished a course of antibiotics which would have killed any bacteria.

Today I have had a cardiac echo (an ultrasound of the heart), I presume this is because of the risk of mitral valve prolapse in EDS. Then I had a barium xray which was pretty horrific all round really. It didn’t go exactly according to plan!  First I had to drink some barium (chalky liquid) but there was rather a lot of it…two whole glasses full! I struggled to get it down, nearly threw up half way through and by the time I got to the end I was doubled over in pain and in floods of tears. The plan was to take a series of xrays whilst lying on my front, which was another painful experience after having so much to drink!  They took 5 xrays 20 minutes apart but eventually they said that it was all still in my stomach and I would have to go back to the ward and come back in an hour. So off I went back to the ward and got some well needed IV tramadol! About 30 seconds after having that the porter came back to take me down to xray again. So this time off I went, still in pain but with the added bonus of feeling like a space cadet! They repeated the process with 1 xray this time and came back saying it still hadn’t moved anywhere! So…back to the ward again but this time to return after 2 hours. I was feeling a little better by this time so it was a little easier to lay on my front this time. They said that it may have just moved enough to get the images they required but they would ring the ward if they needed any more! All in all I had 7 xrays and it took 5 hours go get them all! Thankfully they did not ring and I have managed to get some rest this afternoon. My new consultant came up to see me shortly after and said he would like to arrange a meeting with my family tomorrow. He also said that I would definitely be having the NJ tube tomorrow even if he had to put me on someone else’s list to achieve it! He said I couldn’t really wait till Tuesday. He said he had some of the results back already but of course didn’t divulge any information…that will have to wait till tomorrows meeting!

Tomorrow morning I will be having another abdominal xray. Remember me telling you about the pills with the tiny white rings in? Well tomorrows xray is to see where they have got too. I bet that makes an interesting picture lol.

All in all I’m doing ok, it has been a week of relentless testing but hey it’s worth it for a real explanation into what my body is playing at!!!!! I’m very tired and weak right now but by this time tomorrow I should be on my way to getting some proper nutrition at last….without the pain!


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Monday 18th July 2011


I apologise for not posting over the weekend, I have had so much to take in this week and my head is spinning. This is going to be a rather long post so make yourself comfy and put the kettle on lol.


Ok, Friday....
I went down for my abdominal xray (to see where the rings had got to). When I got there they were questioning whether they would be able to see the rings at all due to the barium I had ingested the previous day. I sat and waited whilst they went to speak to my consultant about it, as they didn't want to expose me to yet more radiation unnecessarily. Eventually she came back and said he would still like to do the xray as it would be useful to know exactly how far the barium had got too anyway. It was very quick and easy, I just had to lay on my back this time which was much more tolerable.

At lunch time they came to take me to endoscopy for the NJ tube (feeding tube which bypasses the stomach). They numbed the back of my throat and then gave me a shot of Medazolam to make me sleepy. I don't remember every detail but I certainly wasn't asleep. I remember him threading the guide wire through my mouth and down my nose, it was not a pleasant experience but not too painful...more uncomfortable really. I was glad to have it out of the way and finally have a source of nourishment!

When I got back to the ward my mum and lovely hubby were waiting for me. I was wide awake and able to potter about in my usual frail and freaky fashion lol. Our meeting was scheduled 40 minutes after I returned to the ward so off we went...with high hopes and lots of questions. Forgive me if I don't remember all the details here, we covered a lot of issues. He explained all the things he had said to me on Tuesday about visceral hypersensitivity etc (see tuesdays post). He then went on to discuss the long term plan and treatment options.
1. Start re-feeding ASAP, not with the intention of just gaining weight but maximising my overall nutritional support.
2. Start on an new motility drug called Prucalopride at a dose of 1mg a day.
3. STOP taking Metoclopramide and do not take it at any time in the future due to the side effects. I was starting to twitch and apparently they can become very severe and even permanent.
4. Botox injections directly into the stomach endoscopically (with a camera down the throat...again).
5. Gastric pacemaker. He told us that when these first came out they had great success with them but as time passes more people who had them fitted are now returning with the same symptoms. Meaning they may not be as effective as initially thought.
6. They are currently working on a new pain killer specifically to target the pain of gastroparesis, as conventional pain medications seldom work effectively. He said that he thought it would be at least a couple of years to finish the development of this drug. However if you can target the pain of gastroparesis it would make treatment far easier than it is at present.

I know I have missed loads of stuff out there but that's about the gist of it. The test results suggest that the problem is isolated to my stomach which is really good news. He is going to put all of this in writing for me so I will share it with you as soon as I get it, I'm sure he explains it better than me lol.

Shortly after our meeting the dietitian came to see me regarding setting up a feeding regime for my new tube. She prescribed IV Pabrinex (vitamin B) and Thiamine. My regime was to start at 10mls an hour for 24hrs with 40ml flushes of sterile water and then increase by 5ml/hr each day over the weekend. She was very nice and obviously had lots of experience of looking after patients like myself which is so refreshing after all this time! She told me to write down any symptoms I had over the weekend as I may still experience pain and bloating with the new tube.

Saturday I started with the trots...woopie!

Sunday still trotting and now with a massive headache which left me totally flawed so I slept most of the day. By sunday evening my tube was starting to get really hard to flush (clean with sterile water) and was becoming blocked. I was up most of the night as the feed pump continued to alarm constantly.

When I got up this morning we started trying to free the blockage in the tube. First we tried tepid water, then soda water, then digestive enzymes and bicarbonate of soda to eat away at the blockage (just like drain cleaner). The dietitian and I have spent all day trying to free the blockage...to no avail. They called my consultant to come and have a go at freeing it but he too could not get it to work for me. So.....I no longer have the tube!!! After all that it had to come out almost a soon as it went in!

After failing to clear the blockage in the tube my consultant went through the options of the best course of action. He knows I don't like being stuck in hospital especially so far away from my family. So he said that I could go home without the tube and he would arrange for my local hospital to place a new tube and also do the botox injections at the same time to avoid having 2 procedures. Now that's forward planning! The dietitian has arranged for all the necessary equipment to be sent to my home address along with the bags of feed and a Carry case so I can get out and about with it. She has also arranged for a community dietitian to monitor my progress under her guidance. I will still see the team regularly as an outpatient but the majority of my care will be local, which is great.

So here I am sat in my comfy bed....AT HOME!!!!!! I expect i will be hearing from them sometime tomorrow with details of what I need to do next. As I no longer have the tube it will give them a chance to work out if the diarrhea was caused by the Procalopride or the feed and also to see if it improves my food tolerance.

Phew!!! I think that's most of it....I told you it was a long one lol. I will keep you posted on any progress, but for now I am just sooo pleased to be home with my loving family. I surprised the children and my hubby as they thought they were just coming to visit me tonight, but instead they got to take me home where I belong xxx

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Thursday 21st July 2011

Well, I'm still here but have been mostly sleeping. The new tablets I'm taking are causing monster headaches and I just can't stay awake. The diarrhea has totally stopped and now I have the opposite problem, with the added bonus of stomach cramps! All in all I feel pretty fed up. Why does nothing ever go smoothly for me? If there is ever a side effect to anything you can guarantee I will get it!

I have been emailing my consultant during the course of the week to clarify some issues we have. He has asked if I could stop taking the ondansetron (anti-sickness) as he said that this has the opposite effect to the Prucalopride I have just started. I don't mind stopping it but I know I will need something for the sickness so have asked if it is ok if I still take the buccal stemitil if I really need it. He has also asked me to start taking Domperidone again and to gradually increase the dose up to 20mg 3x a day. My new meds are as follows:

Omeperazole 40mg 1 x day (previously 20mg)
Prucalopride 1mg 1x day (to increase to 2mg if tolerated)
Domperidone 10mg 3x day (to increase to 20mg over a few weeks)
Mirtazipine 15mg 1x day
Olanzapine 5mg 1 x day
Docusate 100mg as needed
Tramadol 50-100mg as needed
Buccal Stemitil 3-6mg as needed
Movicol as needed

He has been in touch with my local hospital but the Dr he wanted me too see no longer works there, so he is going to speak to the new gastroenterologist there and find out if he is willing to work with the team in Durham. He said that if there is any problem with this then I would have to go back to Durham and continue treatment with them. As far as a new tube is concerned, it all depends on this new man at my local hospital. It is difficult to organise the endoscopy procedure at Durham because he has to rely on another consultant to do it for him as he no longer does endoscopy and doesn't usually have inpatients himself. So I guess it's a matter of waiting to hear back from them now...nothing more I can do, I just wish it wasn't all so complicated!

I have also left a message for the dietitian with a few questions about how I am going to manage my oral intake. I have asked if there are any other supplements I should be taking and I have outlined what I am currently managing...1 x fortisip and the occasional drop of calogen....less than 500 calories a day. This is not too bad if I stay in bed all day every day, but we were planning on taking the kids away over the holidays and I just don't have the energy on what I'm having at the moment. She said she would be back in the office tomorrow afternoon, so if I haven't heard anything tomorrow I will give her a ring and try and clarify what I need to be doing.

I know it sounds a bit doom and gloom again, hospital politics really SUCK! At least now I have a dr who keeps in contact and is prepared to go the extra mile to get me sorted!!!!

Keep your fingers crossed that the new guy is nice and wants to work together too!

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Friday 22nd July 2011

Forgive me today, I am suffering some mega side effects of the new meds. I have a few things to tell you but it will have to wait till my head stops pounding. Will catch you all soon xxx

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Saturday 23rd July 2011

Still not doing too well. Head still pounding and I look like a pregnant skeleton. Hoping to have some better news soon x

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Tuesday 26th July 2011

Ok, so where did we get to? Still struggling with the side effects of the new pills to put it mildly. I have slept a lot just to get some peace from the headaches. I have felt hungry over the last few days which is something I haven't felt for a long time! It's a bit bitter sweet though, as when I do try and have more of the fortisip I'm still getting a lot of pain from it. It feels like I'm torturing myself very time I try. My body is so confused! My stomach is continuing to swell up...to the point were I really do look pregnant! So the new tablets are definitely doing something...just not good things right now.
I spoke to my consultant on Friday and he said that if I continue to have problems I should reduce them to half a dose. I told him I would give it another week before I reduce them, just to see if things improve. My dietitian also got in touch with me to see how things are going, she said to give it few more days too and was very pleased that I was feeling hungry.

I went to the Drs last night and I updated her on my consultants instructions. She told me to increase my docusate since I am struggling to drink the movicol and see if I can get rid of the belly! Other than that we are really waiting to hear from my local hospital to see if the consultant will work with my specialist. I hope to hear from them soon.

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Monday 1st August 2011

Hey folks, sorry for the long pause between entries. As you can probably tell from my absence things have not been going too well. I have been mega sick due to the fact that I'm hungry and keep trying to push myself with the supplements. It's just one big vicious circle! I'm still getting headaches too but they are less likely to last all day now and I do get a few hours respite here and there.

I did however manage to get away for 3 days with the kids, we didn't do very much but the children were able to play on the beach etc whilst I rested inside watching from the window. It was lovely to see my kids just being kids and enjoying the freedom! They deserved a little time to have fun after all the sacrifices they have had to make for me over the last year and a half.

I haven't heard anything from the local hospital about my nutrition, it's been 2 weeks now so if I haven't heard anything by this time next week I will have to sort it out myself. I just keep taking the pills and hoping that soon this will all be different and I can get to go build sandcastles on the beach too!!!

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Friday 5th August 2011

03:18am....probably not the best time to be writing but I need some serious distraction. Have tried the pills, the music and the deep breathing but still I sit here in pain and unable to sleep. Everything seems so different at this time of day, it's much harder to cope. The lyrics of one song are on repeat in my brain, "I wish I knew how, it would feel, to be free." I lay here thinking of what life was like before the chaos started and how much of life we take for granted. So much of our time is spent worrying about trivial things that really don't matter. The most important thing to me right now? To find the strength to fight another day.

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Tuesday 9th August 2011

Hey guys, sorry I haven't blogged for a while, and for being so down in my last post. I got a letter from durham last week and have been contemplating whether I should post it on here or not. I have read it several times and was not really prepared for the emotions that came with it. It is great to have a plan written down don't get me wrong but it also feels even more real...if that makes sense? I think that over the last few months I have detached myself as a way of coping, and seeing it all in black and white kind of brought it home just how long term this is likely to be.

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Tuesday 16th August 2011

Apologies once again for the absence my friends! I won't bore you with the details but lets just say things are a bit rubbish right now. I am still waiting to hear from my local hospital about the botox and NJ tube, so I have emailed Durham to try and find out what is happening. I am waiting for them to get back to me later this week.

After much consideration.....here is my letter containing  my test results and treatment options. I have thought long and hard about posting it, in the end it dawned on me that the whole purpose of my blog is to say it how it is. To provide information for other suffers and hopefully help them along their way. How can I do that if I'm not completely open and willing to share everything with you? So....here it is....

Diagnosis: Idiopathic gastroparesis  (No that does not mean I'm and idiot!)
                  Ehlers-Danlos type 3

Medications: Prucalopride 1mg daily (possibly increasing to 2mg daily)
                     Omeprazole 40mg daily
                     Mirtazipine 15mg daily
                     Olanzapine 5mg daily
                     Ondansetron 4mg 3x day (trial for withdrawal)
                     Docusate 100mg as needed
                     Tramadol 50-100mg as needed
                     Erythromycin one ml (25mg) 2x day

Thank you for referring xxx who we admitted for assessment and a trial on naso-jejunal feeding. She was a student nurse until March last year when she became ill. This happened abruptly around the 15th March and ever since she has suffered from abdominal pain worse on eating, and this has restricted her food intake.

Current symptoms include upper abdominal pain which is present constantly but worse on eating. This is also associated with nausea, vomiting and dizziness. Her bowels are sluggish particularly on opioids. Previously they were slow for two to three days and maybe regular for two to three days. She is losing weight and her current BMI is around 16, her weight 43 kilograms. With NG feeding she has been up to 53 kilograms.

In the past she has always had a "sensitive tummy". She has had abdominal pains and "stomach bugs" but no hospital assessments. Seven years ago, after the birth of her econd child she had an interuterine bleed and was discharged with anaemia. She was readmitted with  a meningitis type syndrome and had a lumbar puncture which I believe was normal. Her symptoms settled with conservative management and nursing care. She was discharged home but readmitted with abdominal pain. Tests were negative. Since then she has had intermittent abdominal pain which was manageable until March last year.

She has always been hypermobile and was recently diagnosed as type III Ehlers-Danlos.

She has a nine year old daughter who has some problems with constipation and a seven year old son who is doing well. Her husband is now carer for the children and herself.

Investigations have included gastroscopy, ultrasound, scanning colonoscopy, coeliac screen, HIDA scan, MRI, MRCP (all normal). She has had a gastric empting study which was delaed (lag time 162 minutes (normal <100) and half time 267 minutes (normal <135). Small bowel manometry was normal.

Examination showed she was thin. She had a BMI of 16, had a raised JVP (jugular venous pressure) and was otherwise normal.

Investigations:

Blood tests showed low potassium and urea as expected in a low nutrition situation. LFTs were normal as was albumin which was 46. Full blood count was normal. Zinc and magnesium were normal. Clotting was normal, antibodies including extractable nuclear antigens were also normal.

Gastric emptying was agian shown to be negative. This was peformed whilst xxx was off her tramadol. Solid meal emptying time was 202 minutes (normal <60 minutes). Barium meal and follow through showed very delayed gastric emptying but normal small bowel emptying. Small bowel bacterial breath test was abandoned because she had been on antibiotics and colonic transit performed with sitz marks was difficult to have an accurate figure on but the transit of the colon did look normal.

Opinion and treatments:

It does seem as though xxx has an isolated gastroparesis. I would agree with prof xxx that this is probably related to her connective tissue disorder causing her joint hypermobility. It would seem as though small bowel and large bowel function is currently satisfactory. We placed a naso jejunal tube and fed her through her jejunum and this seemed to be much more successful than naso-gastric feeding. It caused less pain and xxx was happy to continue with it. Unfortunately the naso-jejunal tube bloked and we had to remove it before discharge. My plan was to have this in situ for three to four weeks to prove that jejunal feeding was indeed a satisfactory way forward. If so, then this could be a bridge treatment that we could use over ther next six to twelve months if necessary, either though a PEG tube with jejunal extension or surgically placed jejunostomy.

In advance of that we might retry promotility treatment. Whilst this has failed in the past we have not had access to Prucalopride, a 5-HT4 agonist. I have started xxx on this at a dose of 1mg daily. The standard dose, in patients with chronic constipation, is 2mg but due to her low weight I am introducing this gradually and it can be increased. I have changed Metoclopramide to Domperidone. This is because she has had some twitching and Metoclopramide long term can cause some permanent choreiform complications. The use of Domperidone is currently 10mg 3x day but this can also be increased up to 20mg 3x day. The anti-spasmodics she was on I have stopped and the Ondansetron is also an anti-motility agent and if she can stop this it probably would be good.

If she fails treatment with promotility agents then the next step would be to try botox injection of the sphincter. I was particularly interested in doing this after seeing her barium follow through which showed a fully distented stomach though with evidence of tonic contractions and little barium getting into the small bowel.

If both promotility agents and pyloric botox injections fail then one possible way forward would be gasto neuromodulation. Whilst this has a good effect in around 50% of patients, the long term efficacy is uncertain and in patients who fail treatment it can be a very negative experience as both the operation to insert the wires and remove them is a significant laparotomy. Furthermore, intraperitoneal surgery in a patient with functional dysmotility is often a very bad thing.

As a way out then as we wait for better motility agents we could use jejunal feeding but we do need to confirm in a trial over 2-3 weeks that this is effective.

Other explanation:

I have spent some time with xxx, her husband and her mother explaining some of the features of visceral hypersensitivity and gut dysmotility. I found them to be extremely knowledgeable already.

Ongoing treatment:

I am going to try and recruit the help of the gastoenterologist at her local hospital. I will see her again in clinic in the next two to three months.

Phew, it's taken me hours to type all that lot! If anyone has had experience with any of these issues I would be really grateful for any advice you may have. Hope this post finds you all fit and well. xxx

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Tuesday 23rd August 2011

Hey guys, again I am sorry for the lack of posting recently. We are all finding it tough at the moment. I feel so incredibly guilty for making the people around me suffer. I am lucky to have such a supportive family but I can see that they are finding it hard. I wish I could just get back to being mum again instead of being a walking liability.

However, I have new hope this week. I did some emailing and ringing around last week to see if I could find out what's happening with my NJ tube. To cut a long story short.... the local hospital is out of the running and I will have to go back to Durham for my new tube. I will be going next Tuesday (30th), thank god for that!!!! I have no problem with going to up there because it is by far the best hospital I have been to (and I have been to quite a few lol) but I really do wonder what the problem is with the hospitals in my area. Why do they take so long to reply to people? I'm not a bloody mushroom, so don't feed me shit and keep me in the dark! I never heard a word from them and from what I can gather, my consultant didn't get much further than me either. I really don't get it, is it something I did??? Whatever the problem is with these people it needs to be fixed...and believe me, once I get back on my feet I will be working very hard to get things changed. If they are doing it to me, how many others are being treated like this? What happens to those people who are not able to stand up for themselves?

Ok rant over lol. Wish me luck for next week! I will try and post more often, but hey, you know how it is. xxx

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Friday 26th August 2011

Today is not a good day. Yet again, more bad news, my appointment on Tuesday has been cancelled. Once again we have problems with the local hospital. The plan was for me to have the NJ tube put in as a day case in Durham and the community dietitians were asked to provide support with setting up the feeds and monitoring for re-feeding syndrome. The community team based at my local hospital were not happy to do this. Meaning that I will have to stay in hospital instead. This then led to problems with bed availability. So the result being that I have to starve for another week whilst I wait for a bed. I'm now due to go in on Tuesday 6th September.

The really crazy thing about all this? It's ok to literally STARVE for nearly two years of your life, with next to nothing in the way of dietetic input, but as soon as I eventually DO get some nutrition into me they will start coming to the house? Sounds totally backwards to me.

So here I lay....waiting for my bed, while my heart pounds and my mind fogs over. My body is cold and contorted with pain....but it's ok....it's ONLY an extra week right?

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Friday 9th September 2011

Hey folks, I'm back!

Everything went according to plan, I went into hospital on Tuesday to have the naso jejunal tube fitted. It was a bit of a painful experience this time round, the medazolam (sedative) started wearing off just at the worst possible time. Needless to say it was not a pleasant experience and my nose and throat hurt like hell...BUT I don't care...I'm finally getting some food. I would put up with anything for that and at the end of the day it was only 5 minutes of pain in exchange for months of agony and starvation.
I'm so grateful to everyone at Durham for helping me to get some quality of life back after all these months of uncertainty.

The treatment...

I had a few days on IV Pabrinex (Vitamins) which has made me feel much brighter in myself. I have also been able to give my body a real rest this week with plenty of quality sleep and NO FOOD yipee!!! I am so relieved not to have to face the cycle of eating and vomiting every day, I can now get the calories I need virtually pain free! Yes my nose and my throat hurt and people stare a little but to me it is SO worth it!

I started on 15mls an hour for 24 hrs will be gradually increasing the dose every few days so that eventually I can just connect to the pump overnight and not have to cart it around with me everywhere. At the moment I am on 40mls an hour for 24 hours so it has to go everywhere with me. Meaning that I'm a little housebound at the moment because I don't yet have a carry case for during the day. Hopefully that will arrive next week and then I will be able to get out a bit more. I was sent home with 7 days supply of syringes, giving sets, sterile water (to flush the tube with) and the bags of feed. At the moment I have a Z stand to hang the bag from which I can carry around the house but the tubes do get in the way a little and a few times I have stood up to go somewhere and forgotten to pick it up (which really helped the sore nose!) so I think it's going to take a while to adjust to having it around.

If I have any problems like the tube getting blocked or dislodged they said just to go straight back to the ward. The staff are all lovely there and so much more organised than my hospital here at home. The community dietitian is coming to see me on Tuesday next week and I have a written plan of what to do until then, with all the contact details I need etc. Believe me after months of dealing with illusive Drs it is so refreshing to be given all this information without having to ASK for it! What can I say? What a team!!!

So all in all it went very smoothly and I'm back in my own comfy bed with very little pain and a belly full of food...yay! Maybe NOW I can start getting my life back!?

Oo and just to say thank you to the anonymous lady who sent me a wonderful message earlier this week, I have posted it at the bottom of the "your stories" page. I hope things improve for your daughter soon, but feel free to contact me any time, I'm always happy to help in any way I can.

You can email me at helpmeminx@yahoo.co.uk


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Sunday 11th September 2011

OK OK that will teach me, never speak too soon!

I have the most excruciating pain in my nose, face and throat. I have had 4 tubes in total now so I know roughly what to expect these days...but this is something else! I started with the mega sore throat yesterday so I went to the chemist and stocked up on over the counter anaesthetic throat spray. It helps a little but it soon wears off. So, step two was to try and eat some ice-cream to sooth it. Bearing in mind I have not eaten ice-cream since a bad experience over 8 months ago. It was brave, but hey, I was having a good tummy day so why not?

Today I know "why not"....vomiting your guts up is not a good way to sooth a sore throat! Especially when you have a tube to contend with too. What on earth was I thinking????? In shear desperation to sooth my throat I managed to aggravate every nerve in my face, to the point where I'm struggling to speak or even swallow and my eyes are streaming with tears from the pain in my nose. 

What a plonker!
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Thursday 15th September 2011

Well, my body is officially confused.com!

The throat pain I was getting earlier on in the week has got worse and I now have a throat infection. It got to the point where I couldn't take my medication because I simply couldn't swallow them so I've resorted to crushing the ones that I can and emptying the capsules. I'm taking a course of penicillin for the infection but I think it's going to take a while because the tube is rubbing and pulling so much.

This may not be so bad if everything else was going well, but that would be too easy! Nope, I'm struggling with the feed too. I increased the rate on Monday to 60mls an hour, for the first few hours it was fine, but after a while I started to feel really unwell. I persevered for a few more hours but it was clear that the longer I left it the worse I was feeling. So I finally gave in and switched it off for a few hours. The nausea eventually settled down, with a couple of stemetil and a long sleep but the tummy ache stayed with me for 2 days. I did re-start the feed, about 5 hours later but took it back down to 40mls/hr. So far I am tolerating that, but still feel very sick. I'm sure it's my body just totally freaking out, I'm so used to having nothing that my system seems to have forgotten what to do with it!

As a result of having to pump it so slowly, I'm still hooked to the machine 24/7. My backpack never arrived either so I am pretty fed up of lugging the whole thing around the house and getting tangled up in the tubing! All in all...I'd pretty much had enough today....and then...the tube blocked aaaarrrrggghhhh! So it took hubs and I several hours of messing about to clear the tube. I even got to the point of ringing the hospital for advice but good old hubby saved the day!

On a positive note.....wait for it.....I've gained 2kg!!!! Even on 1000 kcal a day I've managed to gain that much in just over a week...amazing!

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Sunday 18 September 2011

Wouldn't it be nice if the systems that are put in place actually work! I have had some major issues with the company that provide all the kit for my feeding tube. I was supposed to get a delivery of sterile water on Tuesday this week. It didn't arrive but I had enough to keep me going and the dietitian ordered it again for me on Thursday when she came to visit. They promised to have it to me by Friday....it didn't arrive. So I rang them myself and they apologised and told me they would send it on express courier and it would be here by 10:30 on Saturday morning. Yes you guessed...it didn't arrive! I don't have the 24hr number to ring and they don't deliver on sundays so it's going to have to wait till Monday for me to sort it out. In the mean time I'm left with the problem of no water to irrigate the tube with. I had to trek out to the chemist to ask them if they had any but they don't stock it. They suggested I go to the little minor injuries unit at the local hospital and ask them. So, off I went, with my pump (I still don't have a backpack for it!) and two kids, to find some water. They did have some there which was a huge relief but its in IV (drip) bags, so I really did look like a hospital escapee when I walked out of the building with my drip stand, a tube in my face and two bags of IV fluid under my arm! I was just missing the hospital gown with the split up the back lol. The kids found it very amusing!

It would make life so much easier if the things that are supposed to happen, do actually happen! It's hard enough to cope without all the added stress. The backpack issue is becoming a real pain because I am having to carry the stand everywhere, I only have one hand free to carry things. This is not easy when you have two very lively kids! The tube is constantly in the way and it's just plain awkward. It's not easy adjusting to such a massive lifestyle change.

It may not seem so bad if I didn't have the constant pain in my face and throat, but add that to the pain I already get from the gastroparesis and it becomes a living nightmare. When you have a lot of pain, it amplifies all the other problems you're dealing with too. I just feel so totally broken. Everything hurts, from my joints to my eyeballs. I know I need it though... and so it will have to stay. I just hope that things settle down soon because I'm really at the limit of what I can take.

I have my outpatients appointment in Durham on Thursday this week so I will try and post then to let you know what's happening xxx

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Friday 23rd September 2011

Firstly, I would like to say a massive THANK YOU to my mother-in-law! She is totally amazing and really supportive. She spent ages trawling the internet looking for a backpack that would be suitable for my feeding kit. With Kirbys help at www.livingwithgp.com she eventually managed to find the perfect bag. You can find kirbys write up here: Feeding Backpack. It took a while for her to find a UK stockist, I'll ask her the name of the company and publish it here at a later date. I did get the backpack that is supposed to go with the pump but it requires that you use a special frame to stop the wires from kinking and blocking. That part did not arrive and they are out of stock, so it could be weeks before they get it sorted out. This bag doesn't need a frame because it has a velcro hook to hang the feed bag from. It has made a big difference to me already, as I can now use both hands to carry things and I'm not tripping up over the wires all the time. It looks better than carrying the stand too! I was also getting some lovely bruises from bashing my legs with the stand! So now I have one little piece of normality back, and for that...I am truly grateful x

1. Botox into the pyloric valve in roughly two weeks time. Done via endoscopy and minimally invasive. My help relax the valve and allow the stomach to empty faster. Roughly 20% effective.
2. What tube? Endoscopically placed gastrostomy tube (into the stomach) with a J tube extension. No need for general anaesthetic but would cause trauma to the stomach (my consultant advised against this option). / Or surgically placed jejunostomy (avoiding the stomach) tube. Surgical procedure, so slightly greater risk. Avoids damaging the stomach. Less problems with blockages and movement of the extension.

3. Biopsy, If I choose the Jejunostomy tube it would be a good opportunity to take a full thickness biopsy from the wall of the intestine. This could help to identify better treatment in the future and some would go to medical research to help learn more about gastroparesis.

4. Both the jejunostomy tube AND fixation of a gastric neurostimulator. It is similar to a cardiac pacemaker and works by sending electrical impulses to the wall of the stomach. This is said to reduce the nausea and vomiting associated with gastroparesis. Gets everything done in one surgery. Could help with the pain and nausea enough to enable me to eat again. More invasive as it involves a laparotomy. 50% success rate. The unit will protrude from under the skin and may be very uncomfortable due to my low body weight. Could make things worse by creating scar tissue, especially if it is not successful.

5. Do nothing. Not really an option for me, I would simply starve to death.

An awful lot to take in in a short space of time, but that's where being an informed patient becomes invaluable! I had to make a decision that day, as the tube placement is essential. It will take at least 6 weeks to arrange any surgery so time is of the essence. So, hubs and I went off to have a chat about it and I also rang my mum for advice. The last thing I want to do is make myself worse in the hope of getting better, so I really struggled with my decision. In the end we decided that, if there is any chance that something will help me eat again, then I have to take it, 50/50 or not. So we decided to go with the jejunostomy tube, and the gastric neurostimulator all in one go. It was very scary agreeing to have all that done and I may change my mind yet, but for now it is in the pipeline and my options are still open if I do have a change of heart. I will also be having the botox in couple of weeks time.

In addition to all that, he was not happy about the pain I'm getting from the tube and was going to take it straight out for me. Believe me, he got within inches of taking it out, but then I saw my hubbys face. I could see that he was worried about me loosing weight again. So I kept it! I think it was the sensible thing to do as I need to be as strong as possible if I'm having that lot done. I only wish that it wasn't such a torturous device! I'm still having to revert to sign language at times because I simply can't speak because of the pain....BUT I now have permission to take it out if I feel I can't bear it any longer, which in a way helps the willpower a little. I know that no one will jump to the wrong conclusion and think I'm trying to avoid weight gain. This really should never have popped into my head but after the last 2 years I know how quickly people jump to conclusions about you! So now I have the choice I feel a little better about enduring the pain, because I know that the more weight I put on, the quicker I will recover from the surgery.

I would love to hear from anyone who has had the gastric neurostimulator, your advice would be invaluable to me. You can only get so much information from the medical journals, I want to know what it's really like for patients...so if you have one please contact me by leaving a comment below or email me at: helpmeminx@yahoo.co.uk

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Sunday 25th September 2011

I'm seriously going to kill my hubby!

Why oh why did I agree to keep the tube? I'm such a sucker for those puppy dog eyes! I have managed to catch a cold this weekend and of course it has made the situation ten times worse! I'm in so much pain I can't even bear to touch the tube never mind take it out. I just don't know what to do with myself, everything is just getting on top of me right now. I didn't get much sleep last night because of the pain and then when I finally did get to sleep, I was rudely awakened at 05:00am by the alarm on my feeing kit. So I had to get up and start messing about with flushes and setting up a new bag.  I hadn't realised it was going to run out so early because I have just increased the dose to 50 ml/hr. Before the increase I was able to change it at a much more respectable time of day! So...I won't let it catch me out tonight, I have done the maths today and it will be running out at around 01:00am so I'm going to set up a new bag before I go to bed tonight. I guess it's all just a learning curve and once we have reached the target rate it won't be so complicated, I should be able to just hook up overnight instead of 24 hours a day.... That is if I can manage to refrain from either murdering my husband or pulling the damn thing out!

Going to have to go now I can't stand it any longer...  hoping that tomorrow will be a better day!

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Thursday 29th September 2011

After my last blog things kind of snowballed from bad to worse. After a night of excruciating pain and sleeplessness I took myself back to the doctors first thing. I sat there and begged for him to take my naso jejunal tube out. After three weeks of infections and then finally the mother of all colds I had reached the limit. I explained the outcome of my recent consultation at Durham...every word more painful than the last. He was not happy to remove the tube because he didn't want to jeopardise my plans for sugery. The last thing I want to do is to postpone anything, so, reluctantly I agreed to go home with some nasal cream, throat lozenges and Lorazepam to help me sleep.

Even though I had agreed to endure it a s long as possible I really could not bear the pain. I went to my mums house for some TLC which is something I seldom do these days. It did help take my mind off it for a little while and together we decided it would be a good idea to email my consultant and ask if it would be possible to remove the tube and let everything settle down, then have a new one put in when I go for my botox injections. It seemed like a pauseable idea as the procedures both involve a gastroscopy (camera down the throat). I got a reply almost straight away to say that he would discuss it with the physician who would be doing the botox and get back to me the following day.

I checked my messages on wednesday morning and he had left a message asking for my telephone number so we could discuss things further. He rang me a short while later. He was very concerned about the pain I was getting because they don't normally cause such a bad reaction. He advised me to remove the tube myself there and then. He talked me through it and made me promise to ring him straight back afterwards. I won't go into detail, but it has got to be the most painful experiences of my life!  I have had lots of tubes down my nose over the last 18 months and none of them hurt on the way out before. Needless to say, I had a nose bleed shortly after. It took me a good twenty minutes to regain my composure enough to call back. We talked for a while and he told me to prepare for a bumpy ride over the coming weeks and months. My goal is to get as strong as I possibly can between now and the surgery. I'm going to have to do everything in my power to avoid an weight loss and just hope I don't end up in hospital too much. He wanted to speak to my GP about arranging for me to go to my local hospital for IV fluids if needed. Only on the understanding that I should be seen by a general medical physician rather than the consultant who was treating me before.

So, there you have it. I'm being a pain in the arse as usual! I'm just so very lucky that I have found such a truly understanding consultant who has the foresight to think of even the small things that matter to me. Yes, we are in for a rough ride but I feel that I am not alone in my journey anymore. I have the support of a fantastic team of doctors not to mention all of you guys! Your kind words and wishes mean the world to me.  

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Thursday 6th October 2011

You have probably guessed b the lack of posts that things are not going too well. Just as you think life can't get any worse...it does!

I lost my beloved Grandad, James Michael Stancliffe on Sunday 2nd of October. 

I was called to the house by a family friend at tea time on Saturday. I got there just before the ambulance to find him on the brink of life and death. I followed behind the ambulance and went straight though to the resus room with him. Unfortunately my mum had taken the children away for the weekend to give me some rest, meaning I was the only family member around at the time. I called her to come home as I didn't think he was even going to make the next hour but they were a good 3 to 4 hour drive away. My brother lives away too so he also set off on a 3 hour drive from London. They were the longest hours of my life.

He was always such a strong and determined man and that did not change...even in his final hours. So strong in fact that he not only stayed with me until the rest of the family arrived but made it till mid morning the following day. He was totally aware of what was happening and even managed to make us smile with his occasional muttered words. 

I loved him like a father. I never had a dad but he sure made up for that! He was the man who walked me to school every day as a child and argued with me over my homework and dress sense. He took us on the holidays I remember so fondly and guided me, with wisdom into adulthood. I cherish the time that I had with him and feel so lonely now he is gone. I do not cry for him because I'm sorry...he was ready to go. I cry because he was one of a kind and the hole in my heart will be there for eternity. I am so very honored to have had him as part of my life...he truly was a remarkable man.

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Thursday 6th October 2011

Following my recent bereavement, my own health has decided to take a nose dive too. By Monday morning I was getting the palpitations and nausea in a big way. My hubby dragged me to the doctors and she was not too pleased with my overall condition. She rang through to my consultant in Durham who arranged for me to be admitted the next day, after my botox injections (which were scheduled for Tuesday anyway).

So... here I am again, the last place you want to be following a bereavement. I know I need some rest now as my weight has plummeted from 46.3kg to 42.5kg today. I have promised the family that this time I won't come home without some form of nutrition  to keep me going.

My consultant popped by to see me and said they would keep a close eye on me and if the weight loss continues we may need to change the plan.

 I also met my surgeon for the first time today. He was very understanding and promised that I could attend the funeral next week. He initially offered to put the PEJ tube in for me tomorrow, given my nutritional status, but then he went away and read through my notes. He came back to say that they wanted to do all the surgery in one go so I would still have to wait a few weeks for the tube. He was keen for me to have a new NJ in the mean time to keep me going. He told me that we are looking at the end of october or beginning of November for my operation.

I then saw the physician who does all my gastroscopies and NJ placements but he said that he would not be able to do the procedure until wednesday. He told me to speak to my consultant about it and get back to him asap to book the space.
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Friday 7th October 2011

Today is my 30th Birthday.

What a way to spend it. I'm going through moments of shear exhaustion to floods of tears and pain. I've seen my consultant this afternoon and we decided that there is little point in going through another invasive NJ placement only to have it removed after a couple of weeks. So I'm back to going solo. I guess the good news is, that I can go home this afternoon and spend what's left of my birthday with my loved ones.

Perhaps I can have permission to postpone the big "30" until I'm well enough to party a little! So let's just say I'm still 29...just for a little while longer!

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Wednesday 12th October 2011

So far this week I've managed to stay away from doctors and hospitals... an achievement in itself these days. I have just about managed to balance myself out enough to do what needs to be done.

It dawned on me this weekend that I did not have anything smart to wear to the funeral, all my clothes are far too big for me these days. So my mum and I went out to try and find something that fits. Surprisingly I managed to find the perfect dress in the first shop we went to...how often does that happen? So thankfully I didn't have to expend as much energy as expected. Although it has been a struggle to get through this last few days, I feel that grandad is there making sure it all goes well. Tomorrow is the day of the funeral and I have GOT to keep going for that, I am just hoping that life is kind for a change and allows me just one pain free day. I am resting today in the hope that I will be able to stand up for all the necessary parts of the service, I want to be able to stand tall and honor him as I should.

I had a letter last week for an outpatients appointment with my surgeon on the 1st of November. So there I was thinking I would be waiting at least a month for the operation. However today I got a letter with my pre-assessment date as this Monday 17th October and and admission date for Thursday 20th October. That's next week... scared, yes!!!!

For now though, I am concentrating on just one day. The rest can wait.

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Tuesday 28th October 2011

Ok now back to the future guys, got to keep strong and live for the living. I am still in a sense of total despair but I can't afford to loose my head now. I have a family to think about and that's all that keeps me going these days. Yesterday was my pre-assessment for my surgery. It brought it home to me just how much I need to get on top of things.

For those of you who are new to the page, I am having  a surgical jejunostomy (feeding tube), full thickness biopsies and a gastric neurostimulator. You can view information about the device at: 
www.medtronic.com/health-consumers/gastroparesis/device/index.htm.

The surgery is scheduled for this Friday (21st oct). My appointment went as expected, there were lots of questions about my general health, body weight, height, blood pressure etc and a blood test. I didn't need an ECG this time, as I had a cardiac echo in June this year. The nurse was lovely and again, genuinely interested in my condition. She couldn't tell me much about the operation because she hadn't come across the neurostimulator before, so my mother and I explained it to her. She told me to expect to be in roughly 7 to 10 days due to the fact that it involves a laparotomy (the type of incision). I also presume that it will be a slow process getting the feed up and running again.

I am getting really nervous and have had lots of moments where I have nearly called it off, but then I look at myself in the mirror and see a shadow of what I used to be. I look around the house and it's filled with medical kit, boxes of feed, tubes and syringes. I live in hope that this is not the way it will always be and that is why I can't change my mind... although I'm sure I'll change my mind a thousand times between now and Friday!

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Late dairy entries from my hand written journal Wed 26th Oct 2011

Today is the first day since the surgery that I have felt well enough to put pen to paper. I went to theatre first thing on Friday morning and spent the whole day sleeping off the anaesthetic.  Saturday and Sunday were really tough to get through. I had very high levels of pain all down the right hand side of my wound above the stimulator. I was on patient controlled analgesia (PCA) which is a system where you can press a button to deliver pain relief when you need it. However this was not working for me, I don't seem to get much benefit from morphine and this was no exception. We got to a point where they had to call the anaesthetist out to help me get on top of the pain.  They also got the surgeons to come and check that there were no serious complications. Thankfully there was nothing sinister going on but it took most of the night for me to get control of the pain. They increased the dose of morphine and gave me some lidocaine patches (local anaesthetic).  When my surgeon came the following day he explained that some people do experience high levels of pain following the placement of the neurostimulator and that it would settle down given time. For now I'm taking everything they can throw at me for pain.

As far as feeding is concerned, we waited till after the weekend to start using the jejunostomy tube. So Monday was the big day... it did not go so well. I started feeling sick just a few hours later and I have spent the last few days with severe nausea and vomiting. Not exactly the start I was hoping for, but I'm sure it's just early days. I have been unable to eat anything at all since the surgery so I thought I would be brave and try some soup... you never know if you don't try! Turns out that it was another bad idea, I had 4 spoons full and even that tiny amount was enough to make me vomit. It hurt like crazy and has really knocked the stuffing out of me. So for now I'm sticking to only having what I can get through the feeding tube, at least till my wounds have healed a little better!!! I am currently on 20ml/hr over 24hrs which adds up to roughly 480kcal/day...however, determined not to give in, we are going to increase this today to 35ml/hr and then 50ml/hr the next day if I'm tolerating it. I think that the plan is to let me go home over the weekend once I am on a higher feed rate so I have a few days to work on it.

I'm missing my hubby and the children like crazy...it's not easy for them to visit me when the hospital is so far away from home and I haven't seen my daughter for nearly two weeks due to her first ever school trip away! I just can't wait for a cuddle, my mum is bringing them tomorrow  so I'm focusing on that for the rest of today xxx

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Thursday 27th October 2011

Well I feel much better for seeing the children, they just have a way of lifting your spirits! I'm feeling more positive today and am working hard to achieve my goals. I'm now on 35ml/hr and am sticking with that for today, I'm sure if I take it slowly it will all come together sooner or later. I had my first weigh in since the surgery today and have lost a little but I was expecting it in all honesty, it doesn't take a rocket scientist to do the maths on that one but at least now I'm getting something after months and months of starvation. It may not yet be enough to prevent weight loss but that will come with time. 

I'm still walking like a 90 year old and have not mastered the fine art of standing up straight or laying flat yet but again it's just time and I know that this will improve if I keep motivating myself to do a little more each day. 

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Thursday 3rd November 2011

I had my surgery on the 21st of October. All went well and I'm now working hard to get myself well again. I have had a few issues with the feeding regime already but I expected it to be a bumpy ride. 

After almost 2 years of eating nothing, my body is a little overwhelmed by the new set up. I'm sure that it will all settle down eventually but for now it's like one step forward two steps back. I left hospital on a feed rate of 50mls per hour over 24 hours. This was fine for all of one day but I soon started to feel unwell once I got home. I think it was all just a little too fast for my slow digestive system. I was in so much pain that I had to switch it off all together. After a full night's rest from feeding I  set it going again in the morning at the same speed...determined not to let it beat me! That didn't go too well either...it's all going in, but it ain't coming out if you get my drift. So after much consideration I had a few hours rest from it and then started it up at a slower pace of 30ml/hr. This is nowhere near enough for me to gain weight on but it's better than nothing at all. 

So, back to the doctors for some Movicol, which I can now put through my jejunostomy tube (I couldn't take it before because I am unable to drink it). I'm hoping this will help to move things along ASAP! For now though I feel pretty low and very nauseous but hey what's new! I'm psyching myself up for my appointment with the dietitian this afternoon but for now I'm going back to bed.

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Monday 7th November 2011

Well, I'm still here and still stuck at 30mls/hr on the feeding tube. My appointment with the dietitian last week was lengthy to say the least and I was very tired by the time I got home. We have had some major problems trying to source some syringes that will fit to the end of my jejunostomy tube. I have explained it over the phone to four different dietitians and even provided a reference number but they could not seem to understand what I needed. At least my appointment provided the oportunity for her to see the tube for herself and work something out from there. She said she had never seen a feeding tube like it before and we have had to  make some adaptations to the way I give the water flushes to accommodate an enteral syringe.

My tube does not have a cap that fits on the end to close it off if I'm not using it so the hospital found me some cannula bungs to block the end off with. There is no way of them getting me any more of these so I was advised to sterilise the ones I have and re-use them. This is not too big an issue at the moment because I'm using the tube 24hrs a day but in time I hope to only feed overnight so will need to be able to close off the end of the tube. The stoma site itself is very clean but the stitches are pulling a little. She was shocked when I showed her the tube site because she didn't realise that it would be stitched in place like it is either. She then went on to say that I was the only person in the district to have a jejunostomy tube so she had spoken to the hospital in Middlesborough for advice on changing the feed type. She was going to put me on a fibre feed to help with the tummy issues I was having, but after speaking with them she was advised to keep me on the most basic feed possible and keep taking the movicol.

I weighed in 3 to 4lbs lighter again this week so need to work really hard to get some calories in! I keep trying but I'm getting a lot of pain down my left hand side above the j-tube. I go back next week for another weigh in but I'm going to try and increase the feed rate this week if I can tolerate it. I'm aiming to get back to 50mls and hour so wish me luck and I'll post soon with any progress!

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Wednesday 9th November 2011

Trying to keep my mind occupied this week so I have been busy trying to set up a facebook page for people who read my blog regularly. I'm hoping this will help me reach more people and thought it would be a better way for us all to communicate and share research and suggestions. The page is called: Living with Gastroparesis and Ehlers-Danlos Syndrome. It would be lovely to see some of you on there if you get the time x

I have another appointment with the dietitian today so will post any news later today or tomorrow depending on my energy. I have made some good progress this week and have been slowly increasing the feed rate by 5mls/hr per day so I'm now getting 40mls/hr and so far it's going well. I have also managed to get some calogen down this week so I'm hopeful that I will have gained some weight??? I have even been experimenting with food a little...wow...I know! Yes I have been sick along the way but for me to eat anything at all these days is a miracle in itself. I haven't gone through all this for nothing and if determination is what it takes... I will get there.

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Friday 11th November 2011

As promised here is an update on my visit to the dietitian on Wednesday.....

I've gained 3lb!!!!!!

We suspect that this is due to taking on more fluid through the increased feed rate so I must have been severely dehydrated last week! Not surprising I was feeling so low! It was so nice not to stand on the scales and feel that the weeks effort was wasted.

My plan is to increase the feed rate whenever I can tolerate it by 5mls/hr until I get to the magic 60ml point. Then I can start thinking about having a few hours NOT attached to my backpack! I'm so pleased that things are starting to go in the right direction and am looking forward to making some real headway over the coming months. My wounds are healing nicely too, and each day I am able to stand up a little straighter.


I have been very pro active this week and am once again trying to raise awareness for all those who suffer as I do. I have started a facebook page: 

You can also friend request me: Minx Natalie.

I'm hoping that this will help my GP community to talk more freely and share research and resources with each other.

Please help me spread the word and get my new project going...I hope to see some of you guys there!

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Monday 21st November 2011

Have had a fairly settled week with the feeding regime so I have increased the rate to 45ml/hr today! The movicol is finally doing the trick and I have lost most of the bloating that I've had since the operation 4 weeks ago. That in itself has made me feel much better and is one less thing to have to deal with! I had a disaster with the j-tube over the weekend and managed to pull two of the four stitches out that hold it in place. I was too tired to go and sit in A & E so I cleaned it and taped it up myself till the doctors opened today. After much consideration we decided to just tape it down for the time being to avoid having to remove the remaining two stitches in order to re site the holes. I came home with a strip of Mefix to keep me going till I see my surgeon next week. This seemed like a MUCH better idea than getting stabbed with needles again! Not long after I got home the doctor rang me back to say she had found some stoma patches that I could cut to size that would be stronger and waterproof so I wouldn't need to change it so often. Seems like a sensible solution to me and I won't be so worried about pulling and catching my tube all the time.

On the weight front, I've lost a little this week.... it's all swings and roundabouts but the important thing to me is that I AM getting some nutrition and without all this I would be in a much worse place right now. 

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Wednesday 23rd November 2011

Well...so much for avoiding new stitches. My dietitian rang today to see how I'm getting on with the feed etc. She was very pleased to hear that I was up to 45ml/hr! I explained that I had lost two of my stitches and that the Dr had given me some dressings to hold the tube in place. She wasn't really happy with that so she contacted my consultants secretary and has arranged for me to go to Durham tomorrow and get it stitched back in. Initially I thought it a bit pointless because the dressings are keeping it secure but then I went to change the dressing after my shower. When I removed the dressing I found that I had lost a third stitch and the remaining one is very thready and sore. I think the dressings have actually made the situation worse by trapping moisture which has irritated all the suture sites. I don't quite know where he is going to put the new stitches because the whole area is sore but for now I have removed the waterproof dressings and gone back to the Mefix tape to try and avoid any further skin maceration. I'm hoping that it will settle down a bit before tomorrow!!!

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Sunday 27th November 2011

I don't mention my EDS in my diary very often because the issues I have with that have been there since I was a child and I have just learnt to live with them over my lifetime. I always knew I was a little different to the other kids in school especially where sports are concerned and was teased in high school for having a "hunchback" and a weird way of walking. But Thursday was a reminder that I do have some big issues with it! I have had problems with local anaesthetic at the dentist before but thought I would be ok with a few little stitches. It didn't pan out that way and after having enough anaesthetic to do a small hernia operation I still felt everything. So I left feeling like I'd just had four body piercings but with only a crappy plastic ring to show for it! I ended up having all four replaced because the last one pulled out whilst having the others done. So you could say that I''m quite determined not to loose them again!!! I have taped it up like fort knox to minimise pulling and tugging as much as possible in the hope they will last longer this time lol.

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Monday 28th November 2011

OK! Now it's just not funny any more!!!

I got in the shower this morning and lost 3 of my new stitches as though my skin was paper. I'm back down to one remaining stitch again after only having them replaced 4 days ago! I have had it taped up since they were done and only removed the dressing after it got wet in the shower so I have no idea why it has happened so soon. I'm seeing my surgeon tomorrow for my post op follow up so I'm going to ask him if there is a better solution than being stabbed with needles so regularly. 

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Tuesday 29th November 2011

Hurray no more stitches for me! I saw my surgeon today who agreed that the stitches were not working well and that I could carry on taping it up instead. He was pleased with my progress with the feeding tube (now at 50mls/hr) and weight gain. I told him that I still couldn't eat any more than a biscuit or cracker without feeling pain and sickness and he said that the stimulators can take a long time to work effectively. 

Maybe I was expecting too much from it too soon but when your desperate you just want something... anything, to take it all away! However grateful I am for my tube I'm still human and I still want to be able to enjoy food and all the social aspects that go with it. I was really hoping for xmas dinner this year but maybe that was a bit ambitious...I really need to start setting some more realistic goals lol. Looks like it's going to be more like a lick of the Turkey instead x

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Monday 5th December 2011

I've been feeling pretty rubbish since last time I posted and have spent a lot of my time stuck in bed this last week. I didn't tolerate the feed at 50mls/hr so have had to reduce it again to 45ml, which gives me 1080kcal in 24hrs. I'm still not feeling well with that and keep getting bouts of diarrhoea (spell?). I stopped the movicol a few days ago thinking that was the cause but it should be out of my system by now but I'm still trotting! 

I also managed to strain my right hand when I was flushing my j-tube the other day. It was blocked so I had to use some force to get it cleared and my poor thumb just buckled on me, Ouch!!! I'll leave it to hubby next time lol.

So all in all a rough week but I'm still trying to keep up with my commitments to my blog and facebook page and will try my best to keep adding new stuff for you all. It gives me a focus and helps give me a sense of purpose while I am unable to contribute to life in the normal ways.

Here's the link if you missed it before x


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Tuesday 13th December 2011

Hey guys,

Just a little update to let you know where I'm at. My hand is much better and is back in action... yipee! I won't do that again in a hurry lol. I'm still at 45ml with the feed but I have been quite up and down with my symptoms. The fatigue has hit me like a ton of bricks the last 2 days and I have been marathon sleeping! Oh what an exciting life it is lol. One of these days I will surprise you all with tales of wild adventure and heart stopping excitement but for now, you will just have to put up with my sleep patterns and tummy troubles ha ha.

Ok, so back to realitly... I had a bout of new pain over the weekend, right down the length of my pacer. It didn't last long but it was nasty! I have my GI appointment on Thursday and it hasn't happened since the weekend, so maybe it was just one of those random things but I will discuss it with them when I go. I also see the dietitian tomorrow so I will be fully up to date for my appointment. I haven't weighed myself yet but I don't think I've gained much, if any this week. It's such a slow process!

To add a happy ending... for those who like fairy tales... my efforts in blogging, tweeting, messaging and shear pestering have made a real difference this week! I have met some wonderful GP patients and it was great to be asked to contribute to the Gastroparesis FB Group! It's a closed group so everyone can talk privately without it popping up all over your status for the world to see. If you would like to join, the link is: Gastroparesis Facebook Group we're are hoping to run the group and the 'like' page: living with Gastroparesis and EDS in conjunction with each other to make a better service for you guys xxx
Oooh and before I forget, I have also created a newspaper which collects all Gastroparesis blogs from the web daily... here's the link: Gastroparesis: Life Stories .... busy little bee huh!

I'll post again soon and let you know how the appointments go x

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Thursday 15th December 2011

Ok, yesterday was dietitian day, seems like as good a place to start as any.

At the rate of 45ml and hour I have managed to loose 1kg since my last weigh in. Not a big loss but totally the wrong direction for me! So somethings got to change, I want to go up not down! 

The plan: 
Increase feed rate by 1ml/hr every 2/3days as tolerated. It may be easier to adjust that way rather than jumping up a whole 5ml all in one go.

Try changing the feed. We are going to try alternating a higher calorie feed along side the basic feed I'm having now. This would give me more calories in the same small volumes which would be ideal. We decided to leave this change until after christmas, just in case it causes any problems. Christmas is not a good time to get sick... I've been there!

I was really tired when I got home and as usual, I was frozen to the bone. I just can't cope with the cold weather at all, it doesn't matter how many layers I wear I just can't get warm. I wish I was a bird so I could migrate in winter.... and the flying bit would just be a bonus lol.

Anyways, back to today.... I had my GI appointment at 12:00 so had to set off before 11 to get there in time. Guess who didn't wake up...yup, that was a good move. I managed to sort my meds and my pump in super quick time... even though I did look a bit rough lol. Anyhow, we made it just in time... phew! 

We covered all the stuff we had talked over with the dietitian yesterday and he agreed with the plan. He understood the difficulty I was having with the feeding regime and the challenges ahead. He's going to get in contact with my dietitian to discuss it further. Next on the agenda was the pacemaker. He was disappointed but not surprised to hear that it wasn't doing anything for me. He said that it was worth trying one adjustment with it to see if we can get it to work better but he doesn't think we should play around with it too much if it isn't doing the job after that... I'm still hopeful.

During my surgery I had some full thickness biopsies taken to try and gain a better understanding of what's causing my GP. Unfortunately, to avoid complications such as adhesions and peritonitis they had to be small. Only, they were too small and didn't contain all the necessary layers of tissue to do the tests they wanted. This means that they may need to take more biopsies during any future surgery. Instead they will use the biopsies they've got in a study into people who have connective tissue disorders as a possible cause of GP. 

I'm totally wiped out so will leave it there for today, catch you guys soon x

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Monday 19th December 2011

I have been quite down since I last blogged, it's hard to be positive all the time. I've been so tired over the weekend and have been getting a lot of pain around my j-tube. It got gradually worse over the weekend but there is no sign of infection, just pain. I thought initially that it was the feed causing it because I had just increased it. So I switched my feed off at 2:30am to see if it would settle down by morning. It was no better this morning and it hurts when I try and straighten up properly so I got hubby to take me down to the doctors. He didn't really know what was causing it because there is no visible sign of infection but he has put me on a course of flucloxacillin just in case. I re-started the feed this morning because the pain was exactly the same after my few hours rest. I'm just hoping it settles down before xmas... only 5 days to go! 

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Tuesday 20th December 2011

What next... come on hit me with something new why don't you!

I had a routine appointment with the dentist today and it seems that all the months of vomiting, pills and malnutrition have taken their toll. I have always had perfect teeth and only had my first filling a little over a year ago. I went 3 months ago and she said that I may need another filling at some point but I had my NJ tube at the time so she said she would wait until my health was a little better. I only went to get some more flouride put on to protect them a bit until I feel up to doing something about it. I got a bit of a shock when she started charting them, all I could hear was cavity cavity cavity all the way along my upper and lower molars. Wow what has been going on with my teeth??? Did she miss it all the last time I went or did that all happen within 3 months? She wasn't happy to leave it any longer to sort them out so now I'm going to have to go and get the whole lot done in one go.... great! Because of my issues with local anaesthetic she suggested I have it done under a general. I wasn't so sure that would be a good idea for me because GA's are not good for gut motility. We finally agreed that sedation would be the best option. 

How much more do you want me to take? It's just one thing after another all the time. I love my teeth and have looked after them religiously all my life. I have been especially careful with them since the vomiting started because the last thing I want to loose is my smile! I really don't understand why they have got so bad so quickly, it's just staggering.

The pain around my j-tube is much the same and my hand has flared up again just to add insult to injury. So all in all it's been a great week so far lol. I should run bets on which body part is going to conk out next! If I was a car I think I'd be off to the scrap heap!
So guys, that's the story so far....I still cant eat....I'm still loosing weight....I'm sick of calogen and milkshake style supplements....but I'm GOING to find an answer. I'll keep posting new material and continue to tell you about my journey, If it helps even just one person out there I'll be happy x






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16 comments:

  1. Awesome to have answers! So happy you have some idea of where to go from here! It is very common in EDS, I have those issues too. I hope you are feeling better! XOXO

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  2. I will never complain again about TRYING to lose weight, it must be frustrating for you to see comments like mine this morning, so sorry.
    I really hope the upped dose of meds work. x

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  3. Hi Babes,

    Sorry that things are such a mess at the moment. I'm hoping the meds will help you keep stuff down.

    Unfortunately GP is outside the realms of most general practicioners experience.

    Promise me if you get worse you will ring for an ambulance. I know you dont want to be hospitalised but I think we both know its coming to that.

    Love
    Rach KidMorris - Twitter or The Myasthenia Kid Blog

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  4. Hey Rach,

    Thanks for all your support, you are a true friend x

    I have been thinking about what i'm going to do all day as I know I probably wont get better on my own now, it's gone past that point now. I promise I wont leave it too long before I do something about it, my hubby wont let me xxx

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  5. Hi honey, when I saw your pic, I swore I was looking in my own eyes! Just a little over a year ago I looked the same, gained, now losing again! I too hate the stares I get when I go out and can't where my teeth cause my gaug reflex is so sensitive, or my nodding of my head(a permenant twitch from the Reglan). The long nights in pain with nothing but maybe a good TV show or movie (which is only distracting for a short while). Please don't feel alone cause your not!!! I'm right here with you, like an angel across the sea's, look in the stars and there's a big prayer for you to be strong again, and rejoice with your children and husband! Many, many hugs and well thoughts!
    xoxo

    Debra
    dasbina13

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  6. Sorry to hear the tablets aren't staying put. Not nice. Perhaps take the stemitil before taking the tablets for a few days to give them a fighting chance to stay put.

    Thinking of you xxx

    Rach The Myasthenia Kid, 30th June 2011

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  7. 4th July 2011

    Hi Minxy,

    Sorry to hear the tablets didn't stay put and you have been vomiting. I hope the staggered pills approach works.

    Congratulations on the 1000 views on your blog. Thats brilliant well done.

    Do you have any info on your Blog how EDS effects you in other ways? Do you have problems with your joints as well?

    Not doing too well here, hanging on in there. Fell like my body is collapsing around me. Think its the heat.

    Take care sweetie xxx

    Rach The Myasthenia Kid

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  8. Hi Minxy,

    sorry to hear that you are going into hospital, but at the same time I hope that they will be able to help you. This consultant sounds like hes switched on. Maybe they will offer you a gastric pacer?

    Poor hubs, its always are partners that end up being more stressed than we do. Its a big burden for him.

    Thinking of you all.

    Love
    Rach The Myasthenia Kid. 7th July 2011

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  9. Hi Rach,

    At the moment I don't care what they do as long as they do something lol I can already tell that they are going to be a good team...I mean, he even gave us his email address...no more old school Drs who can't communicate woop woop! Love you hun xxx hugs minxy xxx

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  10. Hiya Minxy,

    Thanks for the update I have been thinking of you loads.

    It looks like you have struck gold with this consultant what a hero!! Thank god someone is at last looking after you. Your family must be pleased that he is taking you seriously.

    Hope the rest of the week goes ok. I am like you I have no stomach pain if theres nothing going in and Im on an IV. It should give your tummy a bit of a rest.

    Keep us updated sweetie.

    Lots of love and hugs

    Rach - The Myasthenia Kid xxx
    12th July 2011

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  11. Hey, livingwithgp.com here. I'm glad you are finally going with the NJ tube. I have been following your story for awhile and knew that would be the step you would need to take. I can't wait to hear how well you feel after you get the nutrition your body has been deprived of for so long. You will get your family and life back! I'm on TPN now because of CIP but I'd much rather be on a j tube. Make sure to accessorize with Button Buddies! http://www.mybuttonbuddies.com/ :) That is, when you get your permanent PEJ tube in, if tolerated. Good luck with everything :)

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  12. Hang on in there Hun. Thinking of you.

    Love and Hugs
    Rach

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  13. I wanted to check in on you and see how you were doing. You're still going through the ringer, I see. At least you have doctors who are working with/for you now! Thinking of you... <3

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  14. Sound like some good news at the end of another difficult week. So glad you now have an excellent specialist, and Mum told me how well you were being looked after generally in Durham. (I was brought up there and know the hospital well) Good that you are home again, hope you manage a few days away as planned soon, it will do you all good. Lesley x

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  15. Hello,
    Thank you so much for taking the trouble to post all this detail on your blog, especially when you're so ill. My EDS has recently taken a nastier gastric turn and it's really helped me reading about your experiences. At least I know what I may be in for, as well as what I can be thankful for having escaped so far!

    I'm so sorry you've had such a rotten ride of it. I really hope things improve soon. I would just say that your hubby could get on the phone to hospital PALS if he hasn't already. If you identify what the problem is, they will get onto that department and get some kind of improvement within a specified period. Usually makes a big difference in my experience. Their number will be on your hospital website.
    Good luck!!

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  16. Your story could easily be my daughter's story. Our journey began about 8 years ago. She is now twenty years old. Pain, nausea, and vomiting are now part of her daily life. Her weight varies from 81 pounds to a low of 68 pounds. We have been to doctors, specialists, holistic doctors,hospitals in three states, and even a faith healer (sorry, I was desperate). So many tests & exposure to radiation; botox injections twice which worked for about two months, three feeding tubes,operations,so many vitamins and supplements. And all this makes her feel "just a little bit better." She attends the local university & has dreamed of becoming a doctor since she was 2 years old. She has a grade point average of 4.0 and she takes some heavy science courses. My daughter has so many plans but gastroparesis has other plans. She might quit college after this semester. I would give my life for her to be well. She has missed out on so much already. But she still wakes up with a smile on her beautiful face everday and tries to make the best of it. She is amazing.

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