I fear that a permanent ileostomy is the next step. I hated it. BUT on the other side it was the first time in sooo long that I haven't had fistula pain and minimal drainage. My fistulas (perianal) are out of control right now!!! I just got off the phone with my NP (I don't see my GI until Wednesday) and she is encouraging some alternative treatments...acupuncture and reiki. At this point, I will try anything! Does anyone know of Crohn's centers that have new ground breaking treatments (I know this sounds naïve..) but I told my husband I would be willing to travel anywhere if there was a promising treatment.
Please try the Crohn's centres that BETTY SUE mentioned (I'm sure there are others too, but I'm not from the US, so I'm not much use there), but please please please don't invest your time, money and hope on stuff like acupuncture and reiki for severe Crohn's disease. If money is no object and you just want the placebo effect of feeling better, then fair enough - they won't do any harm. But if you have to scrimp and save, then please don't: it's not worth it. I haven't heard of a naturopath who has a clue about
How long did you have your ileostomy for? If it's less than a year, you may not have had enough time to really adapt. I had mine for 2½ years and I absolutely hated it for the first year. I complained about
it on the Ostomy board endlessly. I was in frequent contact with my two stoma nurses for the first few months; one of them told me that, on average, it took people about
a year to really get used to having a stoma. That helped me a little bit.
Anyway, I'm not going to pretend that I grew to love my stoma and that it was the best thing which ever happened to me. But there came a day when I realised I didn't hate it any more; it was just there, a part of me that I had got used to without realising. It took me, what, maybe a year and a half to reach that point. (I'm not a fast adapter.) In retrospect, I wish I had stayed with the ileostomy. Won't bore you with a long story, but I met with the surgeon who did my first operation and she was happy to reconnect me. Had the reversal done in July last year, so about
7 months ago. It's been misery ever since; a month ago I was seriously on the verge of seeing the surgeon ASAP and booking surgery. Things have improved since then. Not massively but enough to relieve my desperation. I'll still probably end up having surgery unless things improve still further, but I can wait.
There's somebody on the Ostomy board with Crohn's who had a reversal of her temporary ostomy. She gave it two months before seeing her surgeon and requesting a permanent ileostomy for life (the surgeon agreed). Everyone is different. Some people don't mind having a stoma at all, others will do virtually anything to avoid having one. I was in the latter camp, but I've come to the conclusion that if a stoma is the only thing which will bring remission, I'd rather have one.
I hope you can find remission, one way or another.