Diary: Part 3

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

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!

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

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

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!


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.  

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.

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.
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!

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.

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: 

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!

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

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. 

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.

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!

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.

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!

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. 

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!!!

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.

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. 

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

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

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

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

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! 

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