Gastroparesis and Ehlers-Danlos Syndrome

Gastroparesis literally translated means stomach paralysis. Some other terms you may hear used along the way are: Delayed Gastric Emptying, Motility Disorder, Functional Disorder, Functional Vomiting/Cyclic vomiting, visceral hypersensitivity/hyperalgesia, Visceral Neuropathy. This advice is based on my own personal experience, it is not intended to substitute professional medical advice and if you do think you may have Gastroparesis you should seek advice from a doctor. Gastroparesis is a chronic (long term) condition and diagnosis and subsequent therapeutic treatment can be a lengthy process. You need to keep a strong head, even if the rest of you feels like it's falling apart. Arm yourself with as much information as possible to help you make the decisions you may face on your journey. Now we have that out of the way, what I will tell you is... you don't have to take one doctors word for gospel! If you are not happy with the treatment you are getting PLEASE PLEASE ask...

Finally I feel up to sitting at the computer...just! I will post some journal entries in my diary section that I hand wrote in hospital if you would like the full run down. For now I will just bring you up to speed with where I'm at today. 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 a...