I'm so sorry your daughter has gone through such agony, and neither one of you have any answers. If it's any consolation, I also have similar symptoms as your daughter; rheumy believes I am in the prodromal phase of IBD (ulcerative colitis or crohn's). One GI doctor found ulcers in my colon, but says I do not have IBD. Another GI doctor says I have ulcerative colitis at office visit, but after a normal colonoscopy, she says I have IBS (I had the colonoscopy after several months of several drugs that are known to heal colonic ulcers). Finally going to a 3rd GI doctor next week, and we'll see. Is your daughter getting treatment for any of her symptoms? When my rheumy put me on enbrel for my arthritis symptoms (or humira for that matter), my lower GI symptoms disappeared. They didn't resurface until I stopped taking enbrel a couple of months ago. If the GI doctors are not giving you any answers, you might consider taking her to a pediatric rheumatologist. He/she might recommend going the way I did--simply starting a tnf-inhibitor because they cover both inflammatory arthritis and IBD. For me, they were very effective, especially with the GI stuff. Best of luck, and I hope you get some answers soon.
Thanks for your reply, Molly has been put on a two week course of Predinosine followed by 1 month supply of Sulphasilazine (think thats the right spelling)
Our Doctor has decided he is fed up with waiting for the Hospital Docs to decide to treat her symptoms. I am making a diary of the improvement and after 3 days it already seems to be working..fingers crossed.
Hope you are keeping weel at the moment, I am running The Great North Run (UK half marathon) in September in aid of the National Association for Crohns & Colitis, feels like a positive move.
Great North Run is in Newcastle, did marathon yesterday wow that was hard
Hope your son is doing ok now
Thanks for your reply