Gastroparesis and Ehlers-Danlos Syndrome

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 ...

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 d...

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

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!

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

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 specia...

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 bur...