Anyone have experience with fistulas and/or Imuran

I had an appointment with the physician's assistant that works with my GI doctor because I couldn't get an appointment with him for the times that worked for me. She talked to me about increasing my Remicade dose or starting me on Imuran to try and keep my Chron's under control. During my last Remicade infusion my airway closed up even though I was pre-medicated. So I told her I would rather try the Imuran. She said that taking Imuran and Remicade together works really well to keep Chron's under control. Has anyone taken these meds concurrently? She said that it may help the fistulas too but my surgeon and primary GI doc have pretty much decided surgery is the only way to fix my ECF below my belly button. I would love if it kept me in remission.

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I also have had increasing pain around the enterocutaneous fistula I have that is right below what is left of my belly button from my reconnection surgery from my temp ileostomy. On Tuesday I felt a "popping" sensation accompanied by a sharp stabbing pain. Even though I am taking my OxyIR the pain never goes below a 5/10 since... It drains stool and the stool has been blood streaked about half of the time. While I was changing the gauze frank blood ran out. That is NOT normal. With the increasing pain that has me worried. I told the PA and she said that something may have ripped inside and was bleeding. It has happened once before and the streaking in the stool also means something is bleeding more than just the few times it has been plain blood. I have an appointment with my surgeon tomorrow, but it bothers me that the PA just seemed not worried at all about increasing pain and frank blood... I know my surgeon manages the fistula and the GI docs don't really do much with it but I thought she would be able to point me more towards an answer and what I can do to help the problem in the mean time because it is pretty painful.

I was wondering if anyone has had similar experiences and what was the cause?? I am trying to avoid surgery so I can finish nursing school, but I am afraid something is going wrong that I cannot put off surgery...

I've been on Remicade for over a year. The fistula formed in August last year. I got c diff in December which made it bigger and the output ridiculous. It has slowed down, but also depends on what I eat also. I think lately more has been coming out the fistula than making it past it which is a pattern I am not enjoying either. The fistula had seemed to be closing up prior to getting the c diff though. There was hardly any output from it, no pain. But after two hospitalizations for IV antibiotics my surgeon said the fistula matured and would have to be surgically fixed now... I am worried with the blood and increased pain that something has ripped or perforated in my bowel again. I was really hoping to make it through this semester and getting my RN before surgery.


The symptoms of Chron's have been gone since they removed half my colon that was affected and perforated. I've had complication after complication though... Abscesses from surgery, softball size hematoma, fistulas, a clot, c diff, the list goes on and on. It's been quite a year. I am up for trying a new drug, especially if it works well with the Remicade to keep problems away. I want my life back to as normal as I can get it. I am to the point I will try anything to get me feeling and keep me better. I am tired of doctor and ER visits and hospital stays.

Thank you. I hope I can finish too. It's my last chance or I'd have to do the whole program over completely which I have no intention of doing. My husband and parents are the best my husband spent almost every night in the hospital with me that I was there. And I have a couple really good friends. The college I go to has not helped me but a few instructors have worked with me to get everything where it should be so I can finish. I'm lucky with that too.

The surgery of course is not a guarantee and a chance I could develop another fistula. I'll take a chance and hope it doesn't and after over a year I can finally not have poo come from a hole, ostomy or fistula, on my stomach. That would be GREAT.

I don't consider myself tough. I'm just too stubborn. And I don't have a choice but to deal with it and go on. Somedays I just wonder when I'll get a break from all of it for a little while and be able to get back to normal... Then I just wonder IF I'll get a break.

I will not agree to another ostomy this time around. It is so much easier to deal with changing gauze and abdominal pads than a whole bag setup... Ugh. I have thought about that. I will be very angry. They are doing a colonoscopy before the surgery to make sure that they can get healthy tissue to reconnect me after they take the fistula out though. So I'm hoping that prevents that issue...

Chronielass- were your fistulas painful? If they were, were they painful all of the time? I have been taking my oxy for pain 3-4x a day but the pain has increased this past week that it isn't helping too terribly much the best it gets is about a 5/10.. I also get more pain when I eat.
The surgeon said today that inflamed tissue around the area is what is causing the pain and that its normal with them and the blood coming out of it is too. Unless it gets worse i can wait until May for surgery. And hopefully this is just a "flare" with the tissue around the fistula. Otherwise this pain is going to make the next two months VERY long...

Pain for two months that may or may not get better vs graduating college finally (and this is my last chance without redoing the whole RN program again).
Oh choices...