• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Considering remicade - crohns fistula, 8 months

History, I've had proctitis for 8 years treated as needed with canasa suppositories, I bring this up as a reference I've had some history of digestive issues, I didn't think much of it during this time and just used the suppositories, didn't go back to the doc or have further diagnosis.

May 2014 I started using Chantix to stop chewing tobacco, I did quit for about 4 months. while on Chantix I had worsening digestive problems frequent BM, when I saw blood, I went in for a colonoscopy, by the time I had the colonoscopy scheduled etc I was in full stomach cramp mode, losing weight, BM at least once an hour.

July 2014 I was diagnosed with ulcerative collitis, prescribed prednisone and lialda, also began probiotics and eat activia. The bleeding stopped, and the BM frequency went down but it was still just water, nothing solid.
I'm allergic to prednisone so that was removed from treatment.

Dec 2014, I developed a fistula, Feb 2014 procedure, I currently have a plastic string looped thru it to drain, heal. This is not pleasent.

Jan 2015, Diagnosed with crohns based on second lower gi scan, the lialda is not treating the swelling in my colon. I noticed an immediate change to semi solid BM and less frequent within 2 days of having the fistula drain put in, almost like the fistula was causing the watery BM.

Feb 2015, My doctor has recomended I start on remicade.

Here for advice on remicade from others users.
Will the fistula heal without remicade? Can I bring the colon swelling under control with lialda and significant diet modification? I am reluctant to go on remicade, all of reading I've done on it says once I start I'll be on it for years until it stops working then have to look for other options. Any advice is appreciated, this is a big decision.
 

nogutsnoglory

Moderator
Remicade is really the gold standard for treating fistulas. There are others that may help but remicade has the best track record.
 

David

Co-Founder
Location
Naples, Florida
I'm with NGNG above, go with the Remicade if you have fistulae. The probability of it healing on its own is very low and just going with Lialda is like using a garden hose on a 5 alarm fire.

They should also put a seton in the fistula as well to help things drain and heal.

Best of luck to you.
 
Hi. Like a lot of people I was afraid of using remicade on my kid. Now that I see her doing so great I just hope she can stay on remicade for a long time. She did not have a fistula but a fissure, it went away with the infusions. I hope you find something that works for you and start feeling better soon.
 
David, I do have a seton in the fistula, it was put in about 3 weeks ago. I didn't know the correct name, Ive just been referring to it as a plastic string.
From what I've been reading, it doesn't sound like the fistula will heal without stronger meds.

Any additional advice is appreciated, from remicade users or people who have been thru fistula treatment.
 
Top