I have recently started remicade to try and heal a rectovaginal fistula, and was wondering if anyone else did this and how long it takes to start showing improvement? I had my large intestine removed in 99 and j-pouch in 99..Last year was told I had Crohn's from pouch down but not in small intestine..The fistula is really getting me down and don't know where else to turn but to the group for help.I live in a small town and my surgeon is 12 hours away so it's not easy to go to an appointment to talk..I'm really upset about the possibility of going to a permanent ileostomy but my surgeon suggested it..Is there not anything else that can be done ?
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I empathize. I have a perianal fistula. Steroids calm it down beautifully, but screw everything else up (side effects). Humira hasn't helped like we wanted. My new surgeon is recommending Remicade now. I've dealt with all of this since 12/12/12 (day of infamy/abscess bump). Hang in there. I do admit if things keep on getting worse, I'll be asking for an ostomy down the road, someday. Not there yet, but some days, I could be.
Crystal-how does the rest of your pouch look? Are you dealing with chronic pouchitis too?
Only the last 3 years I have started having lots of symptoms almost felt like when I had UC but not as bad..I have had Pouchitis a lot in the last few years and pouch test showed numerous ulcers..Bathroom visits increased to about 15 a day ..I have had 1 blockage and severe cramping daily.The fistula is the worst though ..I don't know how much longer I can deal with that..I have started Remicade and so far the only improvement I feel is my bones don't hurt anymore( I had osteoporosis) .i will try it for abit longer and then I'm not sure what to do...sorry for the long answer
Rachel wow that is a long time to deal with a fistula...I am trying but don't know how much longer I can..I hope the Remicade works for you if you decide to try it.Also is there surgery that gets rid of a fistula or do they keep coming back?
There are surgeries to "cut out" the fistula tract (fistulectomy) for perianal fistulas, but 3 surgeons now have said no to that with me. We already have weaker sphincters after pouches, the risk of incontinence is too high. Plus, potential IBD fistula tracts don't heal as well.
My surgeon may try a LIFT procedure on me... It's a possibility.
Seeing another GI tomorrow. Hoping he has some new ideas.
Rachel, who is your new surgeon? You are from NY correct?
Rachel .What is involved in a lift procedure? Does it have good results? I am hoping this Remicade works but my surgeon said after 2 months if I don't show healing it is not going to..So far nothing except my joints don't hurt ..That has been the only improvement.I have been getting a lot of leg, feet and hand swelling also which might be a side effect ,so they are keeping an eye on that also..Good luck tomorrow and hopefully the doctor will have good news
I too had my surgeries originally in 1999 and then developed r/v fistulas afterwards, and then in 2010 my dx was changed to Crohn's. I too never have had small bowel issues, just the fistulas and cuffitis (Crohn's of the cuff). I had setons in my fistulas that helped them to drain. I was on Remicade for 2 years and that helped, too. I noticed improvement in about 3 doses, I think. I hope it works for you!
I had procedures and setons and years of Flagyl and Cipro and daily sitz baths to help sooth and keep clean the perianal skin/labia. In the end I had to have my pouch removed after 15 years, and today I am fistula and symptom free. I wish it didn't come to that point, but quality of life was the issue. If the Remicade had still worked, I would do that vs. surgery for sure. Praying that fistulas don't end up somewhere else!
Laura
fwiw, I know someone from local support group who with her jpouch ran the gamut of meds, Remicade, Humira, Simponi, to no avail and was battling fistulas, she started on Stelara late spring and last I heard (in the fall) was doing quite well. so maybe that's some hope. her docs had been encouraging her to consider perm ileo to resolve the fistulas.
I'm not in NY, sorry. My new surgeon trained at Mayo; he's currently at WVU Medicine.
Link to what a LIFT procedure is. Currently things are kinda calmish with me, so I'm just holding.