remicade and drugs vs. end ileostomy to control crohns colitis

I have had crohns colitis ( originally diagnosed as ulcerative colitis) for 14 years. For many of those years I dealt with the disease as it flared off and on, although mostly on. Starting in 2011 my most severe flare ever started and over the course of a year I was extremely sick losing 60 lbs and eventually ending up with a perianal fistula requiring several surgeries. As my weight continued to slide we ( my gi and I ) decided that a temporary loop ileostomy would give my belly a break and we would have a better chance of healing the fistula. since having my surgery things have been adjustment but I am loving life with some control and no sickness from my friend colitis. I have had my ileostomy for 6 weeks now and need to make a huge decision. Do I take remicade to see if it will heal the fistula and eventually reverse the ileostomy once I have remission OR make the surgery permanent and make it an end ileostomy. I have reservations about both as there are pros and cons to both solutions. I am looking for some advice from fellow ostomates or remicade users so that I can weigh all options before I make any decisions.

I tried remicade before surgery too, against my better judgement. My gi really wanted me to try it. And I did, and it worked great for a few months. But I was always waiting on it to fail, knowing it could at any minute. After about 5 months it stopped working as good, within 8 months it had stopped and I was worse than I was to start with. After 9 months I had surgery. I wanted surgery I was glad to know the problem was gone and there would be no more, will it work???? I know its a little different when fistulas and stuff are involved but honestly, if you've got a bag now, you like it, you've got one problem spot taken care of, why change what's working?

That is exactly how I am starting to lean as well. I did not know how life would be with the bag but to be honest I like it so much better. I was sick for so long, I had to give up jobs and put off starting my own business as I could not work. I just want to get on,with life. I have two young children (age 2 and 4) that need their mommy back. Once I adjust I think that i will be like so many others that say they wish they had done it years ago. My GI seems to understand why I am asking for surgery rather than drugs but wants me to weigh everything before i make that decision.

I have to agree with all of the above responses. I too tried Remicade before my surgery with no response. If you're happy with a loop, I imagine you'd be even happier with your lifestyle with an end ileo.

I don't know much about fistulas though -- would it heal without Remicade if you make your ostomy permanent?

I didn't have a bad reaction to Remicade and ultimately I don't think that trying it really hurt me that much. I had some of the typical side effects: fatigue after infusions, once a bad migraine for about 24 hours. I know the fact that I had a lot of it in my system at the time made my surgery higher risk, but personally I wasn't prepared to choose surgery until I knew that Remicade wouldn't put me into remission.

If Remicade had worked for me 100% and the decision I had to make was being on Remicade and similar biologics for the rest of my life vs. having a permanent ostomy, I'm sure I would have chosen Remicade. However... it's rare that Remicade works perfectly, and with IBD it usually loses its effectiveness relatively quickly (as opposed to with RA where it can work a charm for years and years)... and knowing what I know now about how not-bad ostomies are... I guess what I'm saying is that if I was happy with my lifestyle with an ostomy and I had no guarantees about Remicade working for me, I don't think I would go through with a takedown.

You have my sympathies, the more I think about this the more I see what a tough decision it is!! You have a lot of good options though and we are all pulling for you no matter what you decide.

I got a good year or so from remicade, and then it stopped working. Humira and cimzia never really worked that well. The good part of having tried about any drug there is is that when I decided on surgery, there were no "what if's;" I was very clear. The bad part was that I got sicker and sicker..... to the point where pred was the only thing that worked at all, and it didn't work that well. Then I got a fever that went as high as 104.6 while I was on cimzia and pred, and it was very, very scary.

I never had fistulas, but I did have all kinds of weird symptoms -- an eye thing, and cutaneous Crohn's -- a rare complication that gave me painful boils. It wasn't clear that surgery would clear up everything, but almost two years out, and so far so good.

You are getting a biased sample here, though, as if the drugs worked great for us, we wouldn't be here. When I got remicade, I saw people who had been on it for a decade and had been doing very well the whole time. So, it really is your call. You have more info than most though since you have the temp ileo. best of luck w/your choice

I was in a similar situation with UC/Crohn's colitis, and remicade and humira both worked for me for a short time, less than a year.i now regret trying them as I wonder if they will cause cancer or something else down the road. My ostomy has completely changed my quality of life, and for the better. I forget I have it most of the time. And I never forgot that I had Crohn's.

The best way I can describe it is like when you have your period and you're in like the middle so it's lighter and you have no cramps, but you still are wearing a pad or tampon. You're aware of it but it doesn't feel uncomfortable and you're not worried about it. Does that make sense?

My biggest worry with you is that you are so soon into your temporary ileostomy. I really don't want to jinx anything, but things can change. You've only had it for six weeks. Please just remember that.

My story/experiences are quite similar but also quite different. First off, I have Crohn's, no questions or qualms about it.

Most of my Crohn's is extra-intestinal with lots of perianal problems. I had no bathroom problems, complete control. Remicade is an excellent choice for those with perianal problems, so I immediately went on it. It was wonderful! Remicade worked so well for me. I was on it for a few months when I suddenly had to go off it due tco thyroid cancer finding. It is completely unknown what caused my cancer. Could it have been the Remicade? Yes. Was it just random cancer? Possibly. No one knows.

Well, going off the Remicade made my Crohn's explode. The perianal business (abscesses, fistualas, etc.) completely blew up. I was unable to sit and in severe pain. So we went with the temporary ileostomy like you to try to give my bottom time to heal.

All's I can really say is, it was whatever. Lots more problems with Crohn's have happened since, though not any perianal issues. I also have many other health issues now complicating everything so that really doesn't help the situation.

I still have my temporary ileostomy and it still works exactly like it's supposed to. However, everything else is shot to he!!. Because of several different factors, my entire trunk is covered in a yeast infection that surrounds the ostomy. It seriously makes life miserable. I am also completely incontinent, with stool and mucus still coming out the normal way. So, I am incontinent with a temporary ileostomy and completely covered in a yeast infection. I am much worse off now with an ostomy than I was before. I now have a more 'typical' case of Crohn's than I had before, when it was mainly just perianal.

Right now, I am in the process of going back on Remicade. Even though it may have caused my cancer, I am willing to take that risk as my Crohn's is completely out of whack.

Take my experiences as they are. Right now I hate my ostomy, love Remicade, and would rather be going to the bathroom the normal way with control as I had prior to my ostomy. Also, do remember that I do have Crohn's, involving not just the colon.