I don't have crohns but my daughter does. She had it at the age of 13 and is now 26. She is in hospital at the moment as she has been getting pain but no real actual crohns flare up. She has had this pain for over a year now with lots of tests. To cut a long story short she went into hospital with the severe pain and her weight had dropped dramatically and she only weighed 7 stone. In the past she has liquid feed modulen through and ng tube in her nose into her stomach. Everytime she has the feed just dripping in overnight she keeps well. As soon as the tube comes out after a few weeks she is back to square one again. This time she went in they had difficulty putting in in her nose. She was due for an endoscopy and so they did it the same time. She told them not to force it but they had and she had blood in her nose and mouth when she woke up.
For a whole week she had immense pain down the right side of her face and was then told she had sinnusitis. Never having had this before, A couple of days later they took the tube out another painful experience for her because they were worried she would get an absess.
She is still waiting for results on her tests. She asked the hospital if she could have a peg fitted so she could still carry on with the liquid feed. They have said no because she can swallow and expect her to drink the forti juice drinks and sip them all day long.
They have now also taken her off her fluids today and doesn't look like she will get anymore. If she could have the peg it would mean she could carry on with her work as a trainee paramedic. She has only three months to go until she qualifies. She is also buying her own home. It is so frustrating that they will not help her with this. She could end up losing her house and her career that she has worked so hard for. She was told it she was anoxeric or bulimic she would be able to have a peg. Before going into hospital her dietician said she was bordering on being anoxeric with all the weight she had lost.
Is there anybody out there that has had a peg fitted for the crohn's and if so could you let us know how you managed to get the doctors to do it for you.