I have a fistula that won't clear up. After being 100% healthy for the past 9 years after j-pouch construction for u.c. I have now been diagnosed with crohn's disease. I developed an abcess in July that had to be surgically removed. This abcess has been a nuisance bringing me back to the doctor's office every month since July. A fistula has developed now and my doctor is talking about Remicade. I have not been on any meds for 9 nine years and am going crazy with fear of meds. For a week or two I tried Pentasa. No good. Eighteen days ago I was put on azathioprine and got deathly sick on day fourteen with pancreatitis. I feel like I've hit a roadblock and don't know what to do. My body feels very abused from just being sick from the meds. I feel the meds have made me worse. Please can someone give me advice about Remicade and the pros and cons. I seem to be in the category of "only 1% of people using this drug will get this symptom." and wham I get it. I'm tired and I'm scared.

Thanks,
Carrie

I might be wrong...but I think the pancretitis puts you out of the running for Remicade. That can be one of the side effect. I was on it for about 3 years, when I developed pancretitis, had to go off, never to try again. My GI took it very seriously.

Jan might know more.

This message has been edited. Last edited by: Cataja,

Hi from a fellow fistula sufferer and ohioan

Our situations are very similar. Had j-pouch for UC 1992 almost 3 years ago had an abscess which burst and I believe was the final blow and formed my pouch-vaginal fistula. I've also been diagnosed with crohns pouch. I decided to try surgical therapy before Remicade due to the risks/side effects. Had advancement flap repair with temp loop ileo because the draining was so debilitating. Then had AF Plug, that failed too. finally tried Remicade in Dec/Jan. My only reaction was a migraine within 24 hours. NOT fun but on the scale of possible side-effects not bad.

Have you tried any surgical management yet? Fistulas are nasty things and I totally understand your reluctance to try Remicade. It was a very hard decision for me to make too. I just felt like it was a last resort for me. Unfortuntately it didn't help. Have you considered Humira? It was just approved by FDA for crohns in Feb and my GI (Dr Shen at CC) thinks it is safer. Perhaps you could try that instead?

I wish you the best of luck!

--
katie

I agree with everything the others have already said but just wanted to add some support. Katie knows these fistulas all too well. I am also a fellow fistula sufferer that had 2 failed fistula repair surgeries but I am responding well to Remicade and 6MP (also on Cipro and a sleu of other meds). I think I might have Chrohns but literally after the 2nd infusion with Remicade in December my leakage stopped. I too get the headaches and am tired all the time but for now the meds seem to be working. I know what you are saying dreading the meds -- I had never been on a lot of meds before because I had a fast and furious case of UC for only 3 weeks and then my emergency colectomy so it does take a toll but it is nice not to have surgical intervention for awhile (had 4 in 2 years). I am definately one of the lucky ones because so many here have suffered for years with these. Although I brace myself everytime I go to the bathroom and I wonder if the fistula will run again if I start coming off of meds (I have no confirmation yet it has been closed so I don't know if it is just the meds keeping it at bay). I only started Remicade in Dec and 6MP in Jan. I agree with Katie on asking about the Humira, I am reading more and more about the Humira and how much it can help it is much easier administered than the Remicade. I wish you the best. If you need to chat let us know, there is quite a group of us fistula buddies here that truly understand.

Kim

The only contraindications against Remicade are serious CHF(congestive heart failure) and known allergic reactions to Remicade or components of it. If your pancreatitis was not a reaction to the Remicade, it would not preclude its use.

Of course, it is completely up to you whether you want to treat the fistula or live with it. It seldom is a serious health matter.

Humira may be an option if you have a diagnosis of Crohn's. It is not yet FDA approved for use in UC yet. It has a similar action as Remicade, it is an anti-TNF drug that is a protein. What makes it different from Remicade is that it is given by subcutaneous injection, rather than by IV, so you self administer, rather than have an office procedure. Also, it is given every 1-2 weeks, rather than every 4-8 weeks, so it is out of your system sooner if treatment needs to be aborted. It is better tolerated than Remicade because Remicade is derived from mouse protein and Humira is fully humanized. In studies, about 25% of the patients had their fistulas completely close. However, these were patients who were taking Remicade and had to stop due to intolerance or ineffectiveness, so the percentage is probably lower than if it was tried as a first treatment.
http://www.medscape.com/viewarticle/552632
http://www.humira.com/CrohnsDisease/AboutHumira/Default.aspx

I have been on Humira since the beginning of December 2006 for my enteropathic arthritis, with decent results. I have had no problems with it. I had previously been on Enbrel with limited results.

Jan

Hi Carrie, I am on Remicade for my fistula and have had good results. I also have an abscess but right now I'm just on antibiotics for that. My surgeon does not want to touch it. I also have Crohn's.
I have never had a 'problem' with Remicade. I have used it on and off for 5 years now. I do get a headache but it is tolerable. I am also more tired than usual but rest is in order.
I had to make a decision to either go back to a temp. ostomy or try the meds. I chose the meds for certain reasons and have had good luck for the last year now. Take care

I was on remicade when I had pyroderma grangranosum, which was 2 yrs ago. I didn't have any side affects. I didn't know that it could cause CHF.

Shelby,
Thanks for your input. It makes me feel better.
Carrie