interesting surgical consult

So I just got home from meeting with the Head of the Colorectal Surg. Dept. at Beth Israel Hospital in Boston. I was meeting her to discuss fistula repair, for the rectovaginal fistula I've had for the past 2 years. First thing she asks me is if my GI & I ever discussed the possibility of Crohns. Yes, but I told her that since the treatment options for both are so similar, the diagnosis didn't matter much to me. Well apparently, the treatment options for fistulas are totally different, depending on if it's UC or Crohns. Crohns fistulas are usually treated with meds, UC fistulas are surgically treated. Since I got the fistula while on Remicade & Imuran, it's not likely that meds will help it. And the success rate for surgical repair is somewhere between 40-60%. Not too high. I can also live with it fine, but she did say that occasionally a fistula track will become cancerous, after 25+ years of having one. I told her that I fully expect to have my colon removed within the next 5-8 years anyway, so hoped to take care of it at that time. However- I am not a candidate for jpouch due to the fistula! She told me no surgeon would attempt a jpouch on someone with a rectovaginal fistula, because the stool would drain all the time. So, if I do pursue surgery, looks like it'll be a perm ileo for me. Which shocked the heck out of me! I had always thought of going that route, but to hear it really hit home. I guess the presence of a fistula really signifies Crohns to a surgeon, & the failure rate for the jpouch in Crohns is so high that no reputable surgeons will do one on a Crohns patient. So whatever- I can live with the stupid thing for now!

Can't have a k-pouch with Crohn's either.

Sue

Hey Eva Lou, your conversation with your doc doesn't surprise me and she's basically right on the mark with the info she gave you...the other reason why the J-pouch isn't recommended for CDers is because with crohn's being able to affect any part of the GI tract and more than one area at a time chances are where ever they do the hook up that area has a greater chance of becomming inflammed, the best option of surgery for a CDer that has issues with their crohn's colitis (CD affecting the colon) is having your colon and rectom removed, I say the rectom because for those CDers that are prone to recto-vaginal fistulas, by removing the rectom you have less to no chance of a recto-vaginal fistula of occurring.

Remicade is suppose to be beneficial for CDers with fistula issues from what I've heard but of course that doesn't mean for every CDer either.

If you're okay with having a permanant bag for the rest of your life (truly a very personal decision) then I say go for it, mainly because of the long time issues you've been having with your fistula.

There are some marked differences between UC and CD maybe you could speak with your GI and find out where you fall...with CD the inflammation can go through the many layers of the intestinal lining (often the culprit behind fistula issues), with UC it remains on the surface of the lining only...with CD there are skipped patterns of inflammation (healthy tissue in between inflammed) with UC generally the entire area will be inflammed, if you ask your doc what exactly the depth of your inflammation is and and what your pattern looks like then they may be able to give you a proper DX.

There is a 2% (very rare) chance of having both UC and CD for one patient as well.


:)

I think my main reason to push for a more concrete diagnosis is the Humira factor- after using Remicade for over 2 years, I still wouldn't say I'm in remission. So I would give Humira a try if insurance wasn't an issue. A perm ileo doesn't really bother me- the idea of surgery itself does, any surgery. I guess I'm a chicken! Overall, my day-to-day life is pretty good, so currently surgery is pretty far from my mind. It just gets annoying, you know, all the meds & doctors & issues relating to UC. I get tired of thinking about my colon so often!

I had other symptoms- passing gas thru it, drainage thru it, etc. For about a year, none of my doctors believed me because they couldn't find anything. Then finally my gynecologist was able to see it. The surgeon I recently met with could feel it during an exam- she didn't see it, but she knew where it was, how deep it was, etc. They're a royal pain- if you have one, none of your doctors will know what to do with it. Not your GI, not your gynecologist. Only a colorectal surgeon has any clue, & even then (as I found out) there's not too much that works trying to close these things for good. Hope you have a better experience with it than me! It's not awful anymore, I've gotten used to it. And it doesn't cause me any physical pain or discomfort.

I have a recto-vaginal fistula, so I have constant leakage from my vagina- blood, mucous, fecal matter, etc. It's not heavy, but I do have to wear a pad daily. The leakage is worse when the UC is acting up, & I'm going to the bathroom a lot. It's more of an annoyance than anything- because the fistula is located right outside the vaginal opening, it's not really "in there"- there's no worries about vaginal infections or anything. Apparently these are some of the worst types to surgically close, because the typical fisulotomy is where they lay open the fistula track & let it heal from the inside out. This always involves cutting thru muscle, which they don't like to do as it can lead to incontinence. I've got enough of that right now, thanks.... A colonoscopy most likely won't show a fistula- you'd have to tell your GI your suspicions, then follow-up with your gyn or a surgeon. And more testing, pelvic MRI's, CT scans, etc.