Diary: Part 4

Please scroll to the bottom of the page for the most recent diary entry x

Tuesday 3rd January 2012

Happy New year to everyone! I'm hoping that 2012 will be a much happier and healthier year for all of us. I want to thank all of you who support my blog and all those who send me such inspiring, heartfelt messages. 

Christmas was tough again this year but I'm am so grateful I was able to get through it without spoiling it for everyone! Much more than I managed last year lol.

The children were just magical this year... even though they did get up at 3:30am! They were so happy they were just bursting with smiles and giggles for days. They are so sweet sometimes I can't take my eyes off them and just have to beam a great big smile straight back ; ) I love my family so very much and am so grateful for those magical memories! 

You will be excited to hear that my brother (who is awesome by the way!) got me a truly thoughtful gift this year. He has bought me 2 years web hosting and is helping me set up my own web site. I will be able to provide so many more resources than I can currently fit onto blogger. I can't wait to get this new project up and running! The site will be at: www.helpmeminx.com  but it may take a while before it's operating so bear with me and I'll announce any progress here.

My body has not been quite so well behaved the last few weeks and I'm still getting a lot of pain around my jejunostomy. I took the course of antibiotics but it made no difference so it's not an infection that's causing it. I have also had a flare in gastric pain which has led to a succession of sleepless nights. My hubby finally persuaded me to visit the GP today but they said I would be better to ask my GI team. I also discussed the outcome of my recent dental check-up with her but again she said I should ask them about it but a bone scan would probably be a good idea. It's really hard to know where to go when your team is based so far away and nobody local ever knows what to do. 

I'm getting tired so will leave it there for tonight, I do have a few more things to say but it will have to wait for another day x

Friday 13th January 2012

Somebody shoot me! 

I'm still having pain from my tube site and as yet have not heard from my GI team. I saw my dietitian on Wednesday and she is going to try and get in touch with them for me, so hopefully I won't be hanging on much longer. At least I hope not because I can feel myself sliding downhill with my symptoms again at the moment too and I can't cope with both. When I'm sick it is so painful I can't move. Not only is it making the tube pain worse, but it is also pulling on my surgical scars which are still very sensitive. I don't know wether to wait until I hear from my GI team or to just bite the bullet and go back to my GP again before I hit rock bottom.

To add to the stress I applied for disability living allowance a few weeks ago and have been denied. I wish they could see me... and then tell me I am capable of cooking meals and doing the shopping!  It was a real slap in the face. I fail to understand their decision and have had to spend what little energy I have at the moment trying to sort it out. It just goes to show how ignorant people are about gastroparesis and the effect it has on your life. I got some advice from my local carers resource who told me it would be best for me to ask for a medical assessment instead of trying to explain it on paper. Sounds good in theory but I have heard lots of negative stories about the way DLA medicals are carried out. For now I have asked for my forms to be reviewed in the hope that someone new might have a better understanding and change the decision without any further work from me. I hope that's the end of it because I really don't think I have the energy to get caught up in an appeal.

After seeing the dietitian this week we have decided to change my feeding regime. I have only managed to gain half a pound in 4 weeks and I know if I was mobilising a bit more I would be losing again. So we are going for a higher calorie feed at 1.5kcal per ml. Which will mean I am able to reduce the drip rate to 32ml/hour and still get the same calories as I am now. The intention again, is to increase this gradually until I reach my new target of 56ml/hr which sounds much more achievable. I don't anticipate any problems because my main issue with tube feeding seems to be volume related so I'm sure it will be better for me.

So yeah that's my world right now, it's been tough but at least we are moving forward nutritionally so I guess that's one thing to be thankful for.... now someone pass the shot gun lol.

Thursday 19th January 2012

I'm not feeling too well right now so going to keep it short and sweet today. I'm still getting lots of pain from the tube site, I take tramadol regularly already for my GP pain, so I dread to think what it would be like without that! My GI contacted me on Tuesday and is scheduling an appointment for me to go and see him and a surgical colleague get it checked out. I'm just hoping I don't have to wait too long now. 

My new feed regime is going well and I'm at 36ml/hr with no real problems so that's BIG progress and I'm now getting 1296 calories a day...yay! 

Will post soon xxx

Tuesday 24th January 2012

Oooh it's been a rough ride since last time I wrote my diary.

Where to start?

Well.... I have been getting a lot of pain in my abdomen where my feeding jejunostomy is placed. On Friday (20th Jan) I visited my GP about the pain once again, because it was getting more severe as the days went on. I was unlucky because I ended up having to see a locum who didn't know anything about me. He prodded on poked my tummy, which made the pain even worse. Then he said, he had no idea what to do for me and I should phone my GI when I got home to try and get in to see him sooner than planned. I knew I had to get help soon because I was in constant pain all over my abdomen by the time I got home.

I rang my GI's secretary, who was lovely as usual and told me she would ask him to ring me back as soon as possible. He called me later that afternoon. After explaining the problem he said that he could arrange to see me on Monday because he would be able to organise and co-ordinate everything before I went through. He asked how I would feel if my pain got worse and I had to go tho A&E.... as most of my regular reader know I HATE A&E because they never know anything about GP. It's not a common problem. This always leads to hours and hours of waiting around to be told that your blood is o.k and you've had some pain meds so now you can go home. My GI understood me when I said I probably wouldn't go even if I needed to, so he said he would call me back after he had made some enquiries. I got a call from the surgical member of his team a little while later. He had arranged for me to be admitted to hospital for some further tests.

It's a very long drive from my house and when you're in pain it seems to take forever. You feel every single bump in the road. I was pretty exhausted by the time we got there at 6pm. I got settled into my bed  and hubby left me to go and collect the kids, who had been dumped on grandma at the last minute (again). I felt so bad leaving them, my daughter was in floods of tears that I was going to hospital and leaving her again. The guilt was horrendous.

The nurse who admitted me did the usual thing...Gasto what? Ehlers...how do you spell that? But I'm used to that now and have some great one line comebacks.... I'll post them on here someday!

I spent much of the night vomiting copious amounts of bile. Normally I throw up a bit of acid and then dry heave for the rest of the time. This was different and I knew there was something new going on. On Saturday I went for down for an ultrasound scan, for which I thought they were investigating my tube site. It was the fastest ultrasound I've ever had... and I've had several! He barely looked at my tube site at all and then sent me back to the ward. I didn't know what to make of it at the time, was it a good thing...there is nothing wrong... or is it something so obvious he didn't need to look any further?

I slept...and slept... and slept some more. They had... for once, managed to balance my pain meds enough for me to get some real sleep for the first time in months!

On Monday morning I met my new surgical consultant. He was really lovely and I think he will look after me well. It turns out he had been to see me on Sunday but I was asleep so he didn't wake me. If I hadn't been laying in bed at the time I would have fallen over at what he said next. It turns out that I now have one huge gallstone sitting in my gall bladder.

Right back at the start of all my problems I was convinced it was gallstones that was causing the problem
but after 5 ultrasounds, an MRCP and HIDA scan they were ruled out more than once. So It seemed like a VERY strange coincidence that I now suddenly have a huge gallstone sitting there clear as a bell.

Now... normally it is fairly simple to remove the gallbladder with keyhole surgery. However, I have the jej tube and pacer (gastricneurostimulator) wires in the way. So my only choice is to have another open surgery. I'm not even over the last one yet and now they are talking about more. I'm not liking the sound of this at all. He went on to say that the pain in my tube site is likely to be adhesion's from the surgery and there isn't really anything they can do about that. I've just been really unlucky I guess. It does not help me feel any better to know that because I know I'm not going to get rid of that pain... at least not for a long while. Anyway, he said that he would ask my GI to come and see me before going home, but I could go after I had seen him. At least now I had some better pain medication to get me through.

My GI came late in the afternoon. He is very disappointed about the whole situation because knows that now I have adhesion's from my first op, I am more likely to get them with another surgery. He did reassure me that I had the best man for the job in my new surgeon. That's good to know, however I would rather not have to go down this road at all!

As per usual, it was kind of a bad time to go home from hospital because the pharmacy was closed by the time it was confirmed I could leave. So I asked my mum to phone my GP for a fax number so we could arrange for me to collect my oramorph first thing today. The hospital offered to let me stay in overnight until they could dispense it themselves but foolishly I just wanted to be home in my own bed. I trusted that everything would go as planned so why stay? I needed to see my daughter and reassure her that I was going to be o.k.

My hubby went to get my meds this morning, only to be told that they had not received anything at all from the hospital so they couldn't dispense anything. Aaarrrggghhhh! So I have spent the whole day in agony, ringing back and forth between the hospital and the doctors surgery. It got to 4pm and we still hadn't heard anything back. My mum had to go down and get them to ask the GP to just do the script himself so I could get some relief! It worked lol and they soon got it made up for me. However, they still need ME to chase the hospital for them to fax the script through....erm...why does the patient have to do that? Shouldn't that be their job? really...c'mon people, I'm SICK!!!!

Wednesday 1st February 2012

Where do I start?

Ok...Last wednesday night I was in severe pain in the area around my jejunal feeding tube. I spent most of the early hours of the morning glued to the computer, desperately trying to ignore the pain. It got to around 5am and after full doses of tramadol and oramorph, the pain was still incredibly intense. Those of you who know me also know how much I hate A & E but in this instance I really had no choice but to go. I was downstairs at home and my hubby was sleeping soundly upstairs so I had to ring the house phone to wake him up because I simply couldn't move by that point. Luckily the children were staying at their grandparents for the night so we didn't have to worry about arranging a baby sitter.

Unfortunately my local hospitals are a total waste of time so I had to tolerate the long drive back to Durham where my GI is based. It was the longest car journey of my life, I was in so much pain by this point that I thought my intestines were going to burst! I stopped my feed, thinking that was causing the problem. By the time we got to the hospital I was in a real state. They were very quick to get me in and offer pain relief but at the time it felt like forever waiting for that IV morphine! They quickly got me in for an x-ray which showed that my body was loaded with poo....mmm no smart comments please lol. I was assessed by one of the doctors, who clearly knew nothing about gastroparesis...I told hubby not to bother asking any questions at this stage because I knew they wouldn't be able to answer them for him. I had to laugh when he asked where the toilets were and the doctor said he didn't know! It was a proper "I told you so" moment lol.

Anyway, I was admitted to the surgical admissions ward and put under the care of yet another consultant...yes that's 3 now, why they didn't hand me back to the one I saw last week when we found out about the gallstone I don't know...that's the NHS for you, lot's of silly systems that don't really work for the patient. So I had to go over everything all over again with this new surgeon (we will call him Mr Ego). He was very flippant with me and said that I probably just needed a big poo! So I had to endure the joys of having an enema, which incidentally, did nothing for my pain!

I was seen by Mr Ego the following morning who seemed not to be bothered at all and just said I should re-start my feed at a reduced rate and see how it went. Great...so he thinks everything is fine, just what I need! However I saw my GI later that day and his concern was very clear. He said that it could be either a structural problem with the jej tube or visceral hypersensitivity of the intestine (The same problem I have with my stomach). He also said I should stop the feed immediately and should be kept nil by mouth and nil by jej for several days to give my bowel a rest. He said they would need to do a CT scan to see if there was a structural problem which could be fixed. He also told me that he would be away at the beginning of the week but his registrar (who is also very nice) would take care of me in his absence. We were heading for the weekend and I wasn't classed as an emergency case, so I was put to the bottom of the list for the scan.

They kept me comfortable with IV fluids and regular IV tramadol and paracetamol (It's worth mentioning that I'm not allowed a full dose of paracetamol due to my low body weight...something to be cautious of if you are in the same position weight wise!) I was still getting pain between doses at this point but for the most part I was fairly comfortable.

Monday came round and another visit from Mr Ego, who just said, we're still waiting for the CT scan and we can't do anything until you've had that. I presumed I would be getting the scan the same day but about an hour or so later one of the junior doctors on the team came to ask me some more questions. When I asked him why, he said that the radiologist didn't think I needed a CT scan at all so I might not get one! If you read my diary you will know that this is exactly the same situation I found myself in 2 years ago when this all started and they thought I had gallstones...I never got the scan and now we have just found a huge gallstone sitting in there...2 years later! I was devastated and I had an awful feeling that I was going to get brushed away again and sent home without any answers. Especially now my GI wasn't there to fight my corner for me! I rang my mum to explain what was happening and she was so mad that she rang the hospital herself to get someone to find out what was going on! They promptly got a doctor from the team to come and explain the situation and he assured me that if the consultant wanted the scan he would get one.

By Tuesday the pain had settled greatly and I was needing less pain relief, which is great, but it also made me wonder if whatever was going on had settled down to the extent that it would not show up on the scan, if I ever got one!

Today is Wednesday and another visit from Mr Ego. He just said...still waiting for the scan, and left! He went into the corridor...entourage in tow, and proceeded to discus my case within earshot. I heard him tell his minions that he wanted me to have TPN (Total Parental Nutrition) which is where they place a line into the veins near your heart and feed you directly onto the blood stream. Sounds ok in theory but TPN is very bad for the liver and definitely not a good long term solution! I was worried sick because I know several people on TPN and although it does solve a problem, it causes more issues further down the line.

My GI's registrar came this afternoon and said that he had basically told Mr Ego that he was way over the top and we should try everything else before resorting to that. Phew!!!! He then said that he would arrange for the dietitian to come and write up a new feeding regime and also get someone to come and adjust my pacer to see if that would get me eating again.

Sure enough, this afternoon, it all happened at once! First the specialist nurse came and increased the voltage on my pacer, Then the dietitian arrived to write up my regime and then FINALLY I got my CT!

The CT prep caused another quandary...I can no way drink a litre of fluid within an hour! So my registrar arranged an alternative for me. I had to drink one glass of prep orally and flush as much as I could down my jej tube. I managed half of it but it did leave me feeling very uncomfortable.

So, now I'm waiting for the results of my scan in the next day or so...fingers crossed guys!

I was supposed to restart my feed tonight but after having the pabrinex (vitamins) needed to prevent re-feeding syndrome, we looked at the regime the dietitian had written...she has prescribed the energy feed instead of the basic, Great! So now I'm waiting to find out if they will be able to go ahead anyway with the basic feed or whether we will have to wait for the dietitian to return tomorrow to change it.

So that's my week so far....I still have a hugely bloated belly and haven't been able to 'go' or even felt the urge, but at least the pain has settled. I just hope that starting the feed doesn't start the pain off again! I'll post when I have any news for you.

A massive thanks to everyone for your support and messages on Facebook etc and I'm sorry I couldn't post sooner. I've just got a new laptop and dongle so now I will be able to keep you up to date more easily and once again I'm sorry for worrying you with my absence xxxx

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxSaturday 4th February 2012

Hello! Guess who's home!!!!!!!!!!

What a week it's been. I've been on a real roller coaster ride and my head is spinning a little. Forgive me if this post is a little erratic but so much has happened my brain hasn't taken it all in.
I suppose I should start with where I left off on Wednesday. So...Right, the CT scan results came in on Thursday, it was my GI's surgical reg who came to speak to me. I was relieved that it wasn't Mr Ego because I feel I can talk to my GI team more freely, they are much more approachable...and dare I say human lol. The result of the scan was clear! So I'm left in the position that, yes, I don't need surgery...but also, what do we do now? It is looking more and more likely that I now have visceral hypersensitivity in my small bowel too. Which is not so easily overcome.

The adjustment I had to my pacer earlier this week has not made any difference yet but it can take months to start working effectively. As promised the specialist nurse returned today, along with the Medtronic Rep (pacer guy). They have increased the voltage again and are also arranging for me to see them in clinic for a follow up in a month or so. I asked about getting a registration card for my pacer, which I should have had by now, so that's another little issue resolved. I greatly appreciate everything they are doing for me, it's so comforting to know that they're not giving up on it, which gives me hope for the future.

I re-started the feed on Thursday morning and sure enough, by the evening, the pain had returned. I also had an awful migraine to boot. The feed was only running at 10mls an hour so this is not a good sign at all.

The original plan was to start the feed along with some IV Pabrinex (vitamin compound) to prevent re-feeding syndrome...after being starved for a week, while resting my bowel. Then, aim to go home on Saturday if all went well. However, due to the recurrence of pain issues we have had to change the plan.

When the surgical reg came to see me this afternoon. We discussed the issues I was facing and he went to discuss it with my GI. I knew it wasn't looking good but what's new these days! It feels  like one crisis to another all the time. My GI came up to see me after hearing about the recurrence of pain after starting the feeding process again. We talked it over at length,  and decided that I can't possibly continue to use the jejunostomy tube when it causes so much pain. This is narrowing down my nutritional options again and he said that  we really needed to consider moving on to TPN (Feeding nutrients into the blood stream). My heart skipped a beat when he said it. I've tried so hard to fight tube feeding all this time and now even that is failing! I felt like it would be giving in...don't ask me why...I don't understand myself sometimes...it just seems like if I do that, I have given up.

He explained that I would have to move to another hospital (much further away) to be assessed and get everything set up. It would also mean being away from my family for even longer. I felt so desperate but deep down I knew I had to do what was necessary to get well again nutritionally. I would like to think that I could persevere with the jej tube and just keep taking the pills, but it's no life when you have that much pain every day. I agreed to go ahead with what ever he thought best, I really need to move on from here and if that's the way forward then so be it. He went to make a phone call to Manchester to try and arrange something for me.

He came back shortly after, with a big smile on his face. He had explained the situation to his colleague in Manchester and they had seen similar cases to myself before. They said that the pain may be caused by the tube being pulled down into the small bowel. Explaining why the pain had been so acute! So now we have a totally new plan and no trips away. 

He said I could go home for the next few days to be with my family. He has arranged for me to go back in on Wednesday to have my jej tube removed and have a new naso jejunal tube put in instead. This will test to see if I can tolerate the jejunal feeding without the surgical jej tube there to cause problems. If that goes well they will place a new J-PEG (tube that goes into the stomach but has an extension which runs into the jejunum for feeding). 
The poor dietitian had been backwards and forwards all day trying to sort out various issues with my feeding regime. She has put me back onto the energy feed at 10mls an hour and included 2-4 hourly flushes of 25-50mls. The original plan was to try and increase the feed rate by 5ml/hr per day but after hearing the new plans she said not to worry about it too much for now until we get the tube issues sorted out but try and have some bolus doses of calogen through my tube instead of continuing to push with the feed.

I had to breathe a huge sigh of relief!...phew, I felt so much better knowing that there was a possibility of avoiding TPN. My family were also delighted to hear that we still had options, they had been worried sick about me all week. I feel so guilty for putting everyone under so much stress all the time. I think that's the hardest part of being ill. You can see what it's doing to the people you love but there's nothing you can do to make it better for them. My children suffer the most and have had to do a lot of growing up recently, it's been so hard on them.

So I'm writing this from my comfy chair at home! It started snowing here this afternoon and everything looks so magical. I enjoyed watching my children playing in the snow out of the window, perfect! What a welcome home!

I thought it best to tell them I was home on weekend leave so that they fully understand that mummy will be away again next week for a while. I think it was a good move because they won't think that mummy is going back because she's got worse again. It's alway hard to know how to approach these issues with little ones. I guess all I can do is reassure them while I'm here and make the most of some quality time together.


7th February 2012

Hi guys just thought I'd stop by and scribble a bit before tomorrow. I'm going back to hospital in the morning for removal of my jejunostomy tube and placement of a new nasal jejunal tube. We are testing to see if the pain settles down with the surgical tube out of the way. If things go well and I tolerate the feed I will be having a PEG tube with jejunal extension. I'm not sure what the plan is yet, I'm sure I'll find out tomorrow. I'll try and post tomorrow evening to fill you in on the details.

I've not been too good this week pain wise and will be so relieved when this tube comes out!

Here's hoping this new plan works better xxx keep your fingers and toes crossed for me xxx

8th February 2012

Hey guys, Just posting to let you all know that my naso jejunal feeing tube is up and running. It was all done early this morning but it's taken all day for me to get up onto a ward and be admitted fully. I don't really know what the plan is yet but will be seeing my GI tomorrow. I'll be sure to fill you all in on the details tomorrow. We have just re-started the feed this evening at 10mls an hour with a view to increasing it by 5mls an hour per day after that. I'm already feeling uncomfortable with it as I haven't been to the loo in weeks so everything is tight and sore. I'll be so glad when they finally pull out my surgical jejunostomy tomorrow! Maybe that will help x Here's hoping!

12th February 2012

I'm feeling pretty miserable at the moment and don't feel that I should really put it into words right now. I'm trying to stay positive but it's impossible to be positive all the time. Apologies if I'm late in replying to any emails, I'll get back to you on my better days xxx

17th February 2012

Hey guys, finally I think I'm in the right frame of mind to put some of my thoughts and feelings into words. I need to get myself together and sort this mess out! My question is, how do you really express how you feel when you don't understand yourself?

That's been my problem this week. My usual course of action when faced with a new Gastroparesis issue is to read...read and read some more. It helps me to understand my body and what processes are going on in there to make me feel so utterly rubbish. However, I have found recently that I can't bear to read one more article about the benefits of gastric pacers and domperidone. If they were really that good we would all be doing cartwheels and eating chocolate cake! In reality, it doesn't work for everyone...but know one knows why. This becomes a big issue, especially when explaining your illness to someone new. Well why isn't all that treatment you're getting working? Why can't you just eat more? Why don't you try and exercise that'll help! Have you tried this that or the other...really? Then there's my personal favourite well you were fine before...what changed? My answer....I DON'T KNOW, I DON'T KNOW, I DON'T KNOW!

Today...I really don't care why or how, I just NEED to feel better. The latest problem I'm facing is that the Naso jejunal feeding isn't going well. I had pinned all my hopes on getting the surgical jej removed to get rid of the pain but alas...after starting the feed the pain has returned. It's so hard to keep going when everything keeps going so horribly wrong all the time. You just go through the motions of one procedure to the next always hoping that this time you'll make some headway. My next appointment is on Monday, I've spoken to my GI already and I know what's next, I just need to talk some things over before I psych myself up for the next step of my journey.

I'll post soon and let you know what's happening. For now I'm just concentrating on keeping my head above water x

23rd February 2012

Hi everyone, Lots has been happening over the last month and its hard to remember everything but heres a run down of where I'm at right now.

 The tube feeding isn't working...by that i mean my body isn't tolerating it. We initially thought that my recent pain issues were related to my surgical tube but after having that removed and having a naso jejunal tube placed, I'm still getting pain. So we are left with no option but to go to Manchester for assessment for TPN (IV feeding). 

This is not a good place to be and I'm finding it hard to accept. I'm really down about it all and just wish that for once something would go my way! I'm waiting for an appointment to go over there but my GI said it could take up to 6 weeks. It will give me time to get used to the idea but it also means that I'm going to be in a much worse place when I do finally get there. I am back down to 45kg, not my lowest of 42 but I'm fast approaching that now. I still have my naso jejunal tube but I'm only getting 300 calories a day through it at the moment. My dietitian thinks I should be in hospital but I know my body well and for now I'm managing.

 I'm also waiting for my surgical review for my gallstones. My appointment is towards the end of March but my GI went over it a little when I saw him on Monday. He said he will recommend that they remove my gastric stimulator and do some more biopsies when they do my surgery. This was a bit of a shock because I hadn't given up hope on it working yet! Obviously he thinks that we have tried it for long enough now, I just wasn't expecting it, especially after my last adjustment when the rep told me that there were a few other settings they could try. 

I feel like I went through it all for nothing and just have a tummy full of scars and holes for nothing. Now I have to face more as a result...that wasn't supposed to happen, I was supposed to get better! I always knew that it was a possibility but at the same time I thought I was doing the right thing. I struggled to make the decision to go ahead in the first place and once I had committed myself I was determined that it would work for me. It turns out it doesn't matter how determined you are when your body has other plans!

2nd March 2012

I got my letter from my GI yesterday. It's funny how, you can hear someone say something and think you are coping with it, but when it is written in words it's so much harder to take? I don't know why that is but for me having it written down makes it real...if that makes sense? 

I'm not posting this for mild entertainment, please remember that this is my life and not a soap opera! It takes courage to bear your soul to the world and share these intimate thoughts and feelings but I do so to help the thousands of other Gastroparesis patients who are battling this horrible condition. By sharing our experiences we can learn together and hopefully learn to live with the challenges that face us. 

So here it is:
I reviewed xxx today. I am sad to say that the Nasojejunal tube feeding has not worked. She is only managing 17mls an hour and is feeling quite uncomfortable with this and sometimes in severe pain. She continues to loose weight and this is really quite worrying. She is also looking quite low and I thought she looked more down than I have ever seen her before. I am not surprised as we have really put her through a number of ordeals and nothing seems to be working. I am going to refer her for a further opinion to xxx in Manchester with regard to possible TPN as I don't see any other options at the moment. Dr xxx has considerable expertise in this field and may have one or two other ideas. I have asked him to see her as soon as possible in view of the continuing weight loss. We reviewed the fact that she has an 8mm gallstone. I did not feel that this was the cause of her symptoms and would only suggest removal of the gallbladder if she was having surgery for other reasons, but I have out this to Dr xxx in my referral letter to him. I have given her a further appointment in 6 months time. 

So that's the plan guys, I'm just waiting for my appointment to come through and we will take it from there. he also increased the dose of one of my meds which has helped me to sleep a bit better than I was and so now I can at least have a few hours of total rest from it all. All in all I'm doing ok, I'm just pushing as much as I can with the feed every day and resting a lot to avoid using my precious calories. I will be so glad when I find something that enables me to start living again xxx

6th March 2012

Hey guys, Im posting because I got my confirmation for my appointment in Manchester today. It is for the 16th of April which sounds like a million miles away to me at the moment. I can't even begin to explain how drained I feel and I just know its only going to get worse which is the hardest part to take.

I'm spending much of my time giving flushes down my NJ tube because I'm not tolerating enough feed to keep my fluids up, meaning I have to do 10ml water flushes throughout the day. I'm going to ask my dietitian if I can get some hydra bags (water) so I can switch to water for a few hours a day...I think anything is worth a try at the moment because quite honestly I'm not getting enough of anything right now anyway so I might as well try it and see if I can get some more fluid on board. I did also think that it might be worth trying the basic feed again to see if I can tolerate higher volumes of that, it's less calories but if I can cope with a higher volume then that would also increase my fluid intake. I think sometimes we have to just take charge of ourselves and just do what you think is best for you! It's not good relying on people who don't live it to tell you what you need to be doing. Of course I won't make any changes without speaking to my dietitian first but at the end of the day no one else has any ideas right now!

9th March 2012

I went to see my dietitian yesterday. It was as frustrating as ever grrr. I find her so pushy sometimes! I understand that I'm not getting enough calories right now...we all know that, but that is because I can't TOLERATE any more. I have pushed and pushed this least 2 weeks to increase my feed rate, with varying degrees of success and failure. I really am doing everything I can to improve the situation for myself but my dietitian doesn't seem to see that. She just keeps pushing and pushing and pushing. 

I explained to her that I was spending much of my time flushing my NJ tube with tiny amounts of water because I can't tolerate bigger flushes. Her suggestion was to give bigger flushes so I don't have to do it so often...yep thanks for that little gem, I can't be trying hard enough eh! That really made me quite cross because if that was an option I would be doing it! 

I asked about the hydra bag but that was dismissed instantly and then I asked if I could have the smaller bags of feed because I'm wasting so much and I'm carrying around all that extra weight just for it to go in the bin after 24hrs. She dismissed that too. She is very unwilling to listen to anything I say and just keeps telling me how she has ten years experience as a dietitian. It feels like if it's not her idea then it's a bad one! She asks question after question after question and it feels like some kind of interrogation at times. I understand the importance of being thorough but she takes it to extremes. She will ask a blanket of questions every week to which the answer is never going to change, like how are you flushing the tube and what with blah blah blah I use cool boiled water just like you told me to do when we first met, why would I do anything different? Nah this week I've been flushing it with vodka you muppet! 

Honestly I'm not kidding, I even have to tell her what size syringe I'm using when she knows full well what size she ordered for me to use...that's all I have so how could it be any different from one week to the next? Its just plain weird sometimes and I could do without it when Im in pain and I've had to drag myself out of the house into the cold for the privilege. I don't particularly want to spend the first 15 minutes of my appointment repeating stuff that she already knows! Then she put the cherry on the cake by saying that if I could keep pushing through the pain and increasing the feed I'll feel better for it. NO REALLY, what? I'll feel better when I get more food in...your kidding, why didn't I think of that? Obviously I'm not suffering enough right now and I need to stop being a wimp and just grin and bear it so I can trade being in bed because I've got no energy for being in bed because Im in total agony!

 It's not just distressing for me it scares my kids too and they get really upset when they see me suffering. It is way too much to expect someone to live like that and I was pretty disgusted by her attitude towards my symptoms. I have a lot of pain already with the regime that I'm following but obviously that's not significant because I don't walk into her office with a grimace in my face. I have had this with every dietitian I've seen other than my team at Durham. They just have no idea what my problem is, they just don't get it and I'm sick of it!

21st March 2012

Hey guys,

I hope you like the videos... I messed up a few times but hey, at least I've mastered video uploads! Im going to try and do some more soon but wanted to know what kind of information you want me to talk about. Let me know if there is anything you feel is missing from my blog which you might want me to include. I am trying to make it a little more user friendly but blogging has its limits and until I get my website up and running there isn't a great deal I can do to change the layout so please bear with me!

I have my surgical review coming up on Thursday so I will update my diary properly when I know more.

It feels like I have been really busy this week but when I sit here and think about what I have done I realise that I have actually done very little. I have been going over things in my mind again which is driving me to distraction. Something happened recently which stirred up lots of old feelings from when I first started on my health journey and I have struggled to try and make sense of my feelings. I sat down to record a video version of my diary the other night because I thought it would be easier than tying to write for a change. Needless to say, I don't think i'll be posting it, I kind of broke down, but when I watched it back I realised just how many feelings I have kept to myself over the course of my journey. I have learnt some valuable lessons over the last 2 years, and when I look back over the events leading to where I am today... I realised that my body may be weak but my spirit is strong and as long as I hold my head up high I will not let this beat me!

26th March 2012

I'm sorry for not posting sooner with an update but you know what it's like!

I've had a really rough week and have been trying to sleep through it all for a while. It's a long story but I'll keep it short !

It was my daughters birthday on Monday...which meant that there was an evil chocolate cake in the house...yep...on Tuesday, I caved... and now I'm in a right old pickle!

My dietitian rang me on Wednesday to see how I was getting on and was more than a little bit worried when I told her the situation. I had already switched the feed off because my abdominal pain was through the roof so she told me to leave it switched off overnight and to start again when I felt well enough.

I had my appointment with the surgeon about my gallbladder on Thursday which was lousy timing but I really needed to go so I went armed with sick bags and stemitil!

My appointment went really well and he said that he does think that the gallbladder is playing a role in some of my pain issues at the moment. He said he would be happy to remove the gallbladder and possibly the pacer too. He wants to speak to my GI first so I'm now waiting to hear back about what they are doing and when. He also said that he would be able to do everything keyhole so I could avoid another open surgery. So that's a little step forward, and hopefully it will answer a lot of my pain issues!

I slept for most of the way home and just flaked out on the bed in my clothes when I got home. I didn't wake up until lunchtime the following day! This is good when you don't get much sleep... but it's not good when you are having to manually flush water down your tube during the waking hours of the day. So now I'm dehydrated and frantically trying to top myself back up.

The weekend was really tough and I realised today that I'm not going to manage if I continue to go downhill much longer. It's my sons birthday on Friday and I want to be here for that so I'm on a mission to regain control!

It just goes to show how one tiny insignificant piece of chocolate cake can completely kick your ass!

Saturday 31st March 2012

I'm not doing so well this weekend and at my last weigh-in I'm officially lower in weight than I was when I first started jejunal feeding. All that hard work gone to waste and now I'm back at square one again. 

I'm really feeling it right now, everything just takes so much effort! Every day feels a little harder with less and less energy reserves. I spent most of last night feeling like I was on the big dipper or something and my heart is racing at the smallest thing so it looks like a trip to the docs on Monday again. 

I'll post soon xxx

10th April 2012

Hey everyone,

I know I have been neglecting my diary a bit lately...but it's for a good reason!

I've been busy trying to get some media interest for patients here in the uk. I'm waiting for a phone call today to try and finalise some of the details with the media company. I was a bit hesitant at first...and then my gorgeous mother in law gave me the push I needed and got the ball rolling!

I posted a message out in the groups but just in case you didn't see it...I'm looking for photos of you guys wearing green for gastroparesis. If you have something to say, or a message to get across, please make a poster and hold it up in the photo...or send me a short caption with the photo and I'll edit it in for you.

I've also been working on a new awareness video... I really hope you like it!

Health wise, Ive got a week to go until my appointment in Manchester so I'm very proud of myself for sticking it out and making the whole 6 weeks!!! I'm very tired and freezing all of the time but I'm being sensible and distracting myself by getting busy...between sleepathons! Its amazing what you can achieve from the confines of your bedroom these days!

Please SHARE the video as much as you can, I'm counting on you guys to help me get the message out!

Friday 13th April 2012

The last two days have been awful! I haven't slept for 2 days now and everything is just too much effort. I'm having severe pain issues and the next few days are going to be hard. I'm just holding myself up on pure determination right now. 

I went down to my GP today with my mum to try and get them to be a bit more organised! They have been worse than rubbish over the last 2 years so it needs to change! When we sat and explained everything to her she said that she would ask to have me included in their weekly meeting so that they all know where I'm at with my care. Pardon me....but did it really take me to ASK! I have been seriously ill for 2 years now and have completely lost count of the number of gp visits and hospital admissions I've had in that time. Yet they don't discuss my care ALREADY? She had to ask me the names of all my consultants, and was totally unaware that so many people are involved. They didn't even have an up to date record of my weight...yet I'm seeing a dietitian ever 2 weeks with phone calls in between. Why is this information not being shared???? We even had to explain WHY I have been referred to Manchester when they should KNOW! Yes she was "nice" but SERIOUSLY? I live in a small rural community and it is a very small practice, there's no excuse... I think the receptionists know me better than the doctors!

So we will see what comes of it, all I want is for someone to be co-ordinating my care and taking an overall view of what's going on! I have been getting very little in the way of nutrition since I last left hospital and they weren't even aware of it! This is todays NHS!


  1. Happy birthday! You're doing really well considering all the nightmare hassles you've been having. Very sorry about your grandad.

    By the way, I've been using some of the information on this blog to convince a bendy friend of mine to seek proper gastro support, as she has been having terrible problems for years, made worse by an ignorant GP. It must be a struggle to post these updates, but you are really helping others' health by sharing this information, so thank you.

  2. Hi Nathelie,
    Condolences for your loss.
    But you my friend kick ass...well done for keeping up your willpower and for the optimism.
    I have eds type 3 & 4 and all you describe is everything I already know.
    I'm however at a stage where nothing at all works so its a matter of time.
    You are truelly magnificent as god has blessed you with a partner who loves you and is sticking it out with you...your beautiful kids,wonderful family as support will help with what may come.
    Be strong and do this for them but above all for yourself.
    Do take care and sincerly wishing you the very best.

  3. I'm truly touched by your lovely message x Sending love and warm wishes to all those affected x

  4. Sorry to hear you have had a rough week of it! If it is any consolation I think you are an inspiration to people with EDS & GP like me :)

    Hope you feel better soon and can slowly tolerate more feed


  5. Thank you so much Korky, did you get your tube sorted out the other day? I hope it's back up and running xxx

  6. So sorry re DLA. It's pretty much common knowledge that nobody gets it on the first application - so don't take it personally, and do appeal. Get someone to get Citizen's Advice on your case too.

  7. Sorry to hear how rough everything is. It sounds like we are on the same boat, all the same symptoms and treatment. Its the same. I too have been having the same issues with my feeds and my teeth! I am not very mobile either. Basically bed and wheelchair bound and have been for the past few weeks since ive been out of the hospital. I am just always in so much pain. Hopefully not permenantly, but no one really knows.Omg, just over the last year my teeth have cavities on all my molars and are pretty much dying off, from my gp. My entire life I had perfect teeth til my gp. I dont remember if you are in UK or US, Im Us. I applied for ssi disability 2.5 years ago and was denied, so I appealed. I was supposed to have a hearing2 days ago, but the judge while looking at cases the night prior, decided that I was obviously eligible because of the severity of my non reversible gi issues and the extent of my EDS. I dont know any of the details of when I will receive it but hopefully soon. My new insurance company as of jan 1 wont cover my enteral feeds, which as you know, gets to be expensive. I take Vital 1.2 continuously in the day and sometimes Optimental. Not nearly as "cheap" as boost or ensure. My point is that you Should appeal!

  8. Great video. Feck I hope things improve soon, my heart goes out to you and everyone else suffering from this condition.


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