RV fistula and EUA

You can get a Crohn's diagnosis anytime. That being said, if you feel okay I personally would not want to go on Remicade.

I do feel fine, knock on wood. I'm meeting with this new doctor on Friday, so I'll see what she has to say too.
Katie

Katie,
Boo about that fistula and mention of possible Crohn's. I'm sorry!

I'm curious what the GI will say about it all. Based on your posts about leakage and antibiotics already, maybe a change up to the routine is needed? I had some issues with the antibiotics because they made everything more liquidy the longer I was on them. I had issues with nighttime accidents and when I completely changed my diet (no grains, no sugar) all of those completely stopped. However, the drainage through the fistulas got worse over time (pouch contents- yuck!). My diagnosis eventually changed to Crohn's.

I did Remicade for my fistulas and cuffitis and it really helped for a time. At that point I was relieved to skip more surgery.

Hopeful for a healing treatment path this week for you!
Laura

I wish I had the willpower to just cut out all carbs and sugar etc to see if it would make a difference. Maybe I will give the remicade a shot. I just don't know, it seems like all of the options are not the quality of life I want. I'm just rambling here. I love eating and don't want to give up so many things I love, I can't live with this constant butt leakage, and I don't want the bag. I really hope this GI doc tomorrow can help me because I just feel like staying in bed and never leaving!
Katie

My two cents, and take it with a grain of salt: I think you should give the Remicade a shot (no pun intended). Remicade is at least as successful in healing fistulae as surgery in IBD patients, and personally I think the risks of Remicade are less than the risks of having another pelvic surgery. Furthermore, I would rather be on Remicade longterm than antibiotics.

I guess the only other thing I would be thinking at this point is whether Entyvio might be an option -- I don't know if it's been studied for fistulizing disease yet.

I just heard about entyvio a couple days ago and it sounds promising. I'll make sure to bring that up tomorrow.
Katie

So I met with my new GI doc yesterday and she was awesome. Unlike my surgeon, who said that I don't need to worry about the fistula, she said we should treat it ASAP especially if it's bc of Crohns, so it doesn't get worse or in case I get more. She ordered a blood test to see if I have remicade antibodies.
She showed me pics from my pouchoscopy in August and the pouch looked pristine, no inflammation. Just a bit in the rectal cuff, as my surgeon noted. I was off Cipro for several days and had symptoms, I don't know why the pouch looked so nice. Why would Cipro help if there is no pouch inflammation?
She did a recital exam and noticed that the cuff was inflamed (it's still sore from that quick exam!). I'm back on canasa
She and my surgeon both noted a bit of weakness in my sphincter muscles, which she thinks is causing my incessant leakage. I actually had just a couple episodes of incontinence in 2012, before my Great Flare of '13. I was crapping myself pretty much all of last year! I had my baby in 2011, but it was a cesarean, so my GI was perplexed at my loss of sphincter tone. She is hopeful that I can get good results with the pelvic floor doctor (appt is Monday) and is hopeful that the remicade will improve my pouch function and that I won't need antibiotics anymore.
So I am going back on two meds that failed me last year. I am terrified that I'll be met with failure after failure, like last year :/
On a side note, I'm sick of driving to Boston, with its confusing streets and annoying traffic. This appt Monday will make 3times in one week. It's at least 2 hrs each way!
Katie

Katie,
I developed an RV fistula after about 11 years with my j-pouch. My pouch is now 18 years old. My diagnosis has never been changed to crohns, even though my fistula appeared so long after the surgery.
I suffer from cuffitis also, and that makes my fistula more active, and I feel pain/soreness in my vagina. Otherwise (when I don't have cuffitis) my fistula doesn't really bother me. And it seemed easier to just deal with it than deal with a surgical attempt at repair, or a trial of Remicade, which I was offered.

These are all hard choices we have to make. Hope you get some relief soon.

C-jay

These are very hard choices. I'm sorry for what you're going through. I'm not opposed to trying remicade, but if that fails I'm not going to consider surgery unless my quality of life becomes so bad. Hopefully it will not!
Katie

I developed an RV fistula about 3 months after my first takedown; we had always suspected Crohn's and that kind of made it official. At my surgeon's suggestion, I was re-diverted back to a loop ileostomy and began Remicade treatments for 8 months. That healed the fistula a great deal, so that only a small surgical repair was needed once I was done, and I was reconnected in June of 2008. Since then I haven't had any recurrence (knock on wood) and still take Humira weekly, among other drugs, to keep the Crohn's symptoms at bay.