Meds. Fail. Surgery. Fail. Help!

Hello, I am a female in my young 30's and have had Crohn's Disease for 20 years. For a majority of those years my Crohn’s was managed by Remicade; it was a life saver. Two years ago, I started dealing with weird neurological symptoms and after a year of testing we came to the conclusion that the Remicade was causing brain lesions and we needed to stop the med ASAP (risk of developing MS). Around this time I got pregnant, which actually helped suppress a majority of my symptoms. After pregnancy and three months without remicade I started with flare up after flare up. I had already been on every other med possible (asacol, pentasa, 6MP, prednisone, Remicade, Flagyl and Cipro). I got put on a waiting list for a trial med (vedolizumab/entyvio). While waiting for the meds I was put on TPN and Oxycodone. I eventually had a resection and temporary ileostomy which was reversed in May. I have been on vedolizumab since May and just found out (via colonoscopy and pill capsule) that the mediation is not working. I had a feeling this would be the case because my fistulas have been really active. I’m stuck. I feel like I have not options (other than some trial called Gilas (sp?)…anyone heard of it? I’m willing to do and explore all paths. That brings me here…not sure what I am looking for. Guidance? Holistic Solutions? Magic pill? Amazing doctor?

Tl;dr- I have been on every Cronh’s medication, had surgery and I am still not in remission.

Are the other anti-TNFs (Humira, Cimzia) ruled out because of what happened with Remicade? If not, my first recommendation would be another anti-TNF.

I don't like to mention the 's' word, but what are your surgery options? For me, having an ileostomy was the only thing which put me into remission in 13 years. I don't know how you got on with your ileostomy, but I've been thinking for ages that having an ileostomy is better than what I'm going through now. Bear in mind that temporary ileostomies are usually loop ones, which are harder to manage than end ileos. I had an end ileo and it really was pretty easy to live with.

This probably sounds like I'm pushing surgery and I'm sorry - that's not my intention. I'm just bringing it up as a possible option. And also because I really have no other ideas :/

I have been on Enytvio (I call it vedoluzimab lol!) since last Spring. No success :(

Question Everything said...
Started Entyvio yesterday regular not clinical. That door is open to try.

T

There are a few chemo-like meds out there, like methotrexate and rituxan, that might be worth looking into.

legitlizard said...
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 Crohn's disease.

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.