To anyone,
I have a questions for you all. I have had UC since 94 and had a j-pouch since 97. have done great with it 3-4 bouts of pouchitis and that's it. My me issue is i got a rectal-vaginal fistula acouple of months ago and went back to a temp. ilio. My GI thinks that i have crohns but besides the fistula i have no flare ups or cramping or signs of crohns. I went to get a 2nd opinion and they suggest that i should get re-hooked back up and see if i have anymore flare-ups like pouchitis and then test for crohns. anyone else have just UC and got fistulas? or does crohns pt only have fistulas? any preventitive meds that have worked? let me know. thanks

Spontaneous formation of fistulas are definitely associated with Crohn's. However, just the fact that you had extensive pelvic surgery also puts you at risk for fistulas, even if you have no form of IBD. Since your fistula is occurring very late after surgery, it does point more towards being IBD related, but I still don't think that this all by itself is diagnostic.

It makes sense to do further investigation, such as a small bowel series or even camera endoscopy. Without even having your stoma taken down you can have these tests, plus you can have IBD serology blood tests done. If it turns out to be Crohns, you may want to go on maintenance oral Pentasa or mesalamine enemas to try to sustain a remission. Failing that, you can go with the Imuran route. I would not have the ileostomy taken down until the fistula is closed. You can try Remicade if it is not closing on its own. It is now approved for treatment for UC.

Jan

hi

Im basically in the same situation as you. First diagnosed with UC in 97. Soon after had a j-pouch. About 1 year ago developed a fistula which even though i thought was healing well hasn't yet healed. Hence my GI now believes i have cronhs. i feel generally well other then going to the toliet frequently and maybe pouchitis twice. In the next few months ill be having tests to determine if it may be crohns. Let me no how thngs work out for u.

I have a recto-vaginal fistula which surfaced in August 18 months after my jpouch surgery. All my pathologies and tests came back UC so they were shocked when the fistula (and perianal abscess) developed. We tried the plug (but kind of knew it wouldn't work they are more successful with other types of fistulas not R/v's). Then I had the flap procedure with fibrin glue -- it worked for about a month and then the fistula started seeping through. The whole time I was on Cipro and Flagyl (still on the Cipro 6 months later). Even though it didn't work it was better than it had been. They now think I have Chrohns and I started Remicade in early Dec and 6MP about 3 1/2 weeks ago. It seems to be working (I am afraid if I ever get off the meds or they stop working I'll be back to square one but for now I have to stay positive). I started the remicade with infusion, then one 2 weeks later then one 4 weeks later now I am on maintenance Remicade every 8 weeks. The 6MP I take every day. I don't love the meds, they have their side effects (tired, headaches, etc) but it is certainly better than the active fistula. The support I have received from this site has been unbelievable and there are a group of us fistula buddies that really help each other. Some people here have suffered for years with this so between us all we have a wealth of information. Please let us know if you have more questions, we are here to help. I must say the Remicade seems to be working for me (not sure it would have if I didn't have the procedures first). I should also mention I have not yet been reverted back to a temp ileo. That would be the next step if this doesn't work.

Kim

Just to let you know...I have RV fistula that surfaced about 10 years post pouch surgery, and my surgeon has not told me that this means I have Crohn's. In other words, I'm not under the impression that getting a fistula indicates Crohn's; in fact, fistulas were mentioned as possible post-surgical complications, so I wasn't surprised even this long after. I figured things couldn't be totally perfect forever.

im in the same situation as you! a few years back i had a fistula near the opening of my anus. it swelled up rather big when i walked. as such i had surgery to remove it.

this prompted my doctor to perform endoscopy on me as he suspected it might be Crohns'. however, pathologist reports shows that the inflammation activity is that of UC. thus, i went ahead with a j-pouch surgery. but since last year, i had inflammation again. another endoscopy shows that i have pouchitis but antibiotics did not work and now im back on the usual dosage of medication such as pentasa and prednisolone. now the issue is still on whether im having Crohn's or UC.

hope to hear more replies regarding this matter too!

Hi everyone,
Just to add my own bit, I developed an r-v fistula soon after my J-pouch surgery. The original explanation from my surgeon and GI-guy was that it was a staple in the J-pouch that "probably...perhaps...most likely" got infected and because the pouch "rests" (?!) against the vaginal wall, the infection from the staple simply maneuvered it's way into the vaginal wall.

I've since had two 'diverting-illeostomies' to give it a chance to heal. Strangely enough I was not told about the use of cipro or flagyl, and only upon my last take down in December, after again developing the rv fistula about a month after being home, did I go on it after reading about it here, and asking my surgeon for a prescription. I've never had any other treatments for it, other than two minor surgeries in which the surgeon attempted once to sew it up vaginally, and another time, he went through the perineum and "pulled muscle down in between the pouch and the vag wall". Neither worked. I'm bummed, and frustrated, but the cipro seems to work for the fistula so far, though I've been off it once, and symptoms came back.

I may be imagining it, but cipro seems to work for the fistula, while flagyl seems to deal with the frequency issues. I'm not sure I have pouchitis, but am in the can a lot if i'm not on flagyl.

arg. I am so wordy whenever I get on here. I guess I don't talk much about this stuff in the real world. Thanks and good luck to all of you...hope this info. helped a bit.

Oh yeah, as far as the colitis or crohn's question, I was always in the 3% indeterminate category due to the fact that I had skip lesions and/but not multi-layered ulcers (I dredged that up from memory- one I think is characteristic of colitis and one of crohn's...?).

Also, does anyone have any info. on the possibilty of intercourse causing or at least exacerbating rv fistulas? My doctors said no quite confidently, but I know that at the time of developing the original one, i was having pretty 'active' sex...three years ago now...sigh.

Seffy, I think you can relax and not beat yourself up about your sex life as far as the R/V fistula goes. It is pretty safe to assume that the fistula began outside of the vagina. The amount of vigor in your sexual activities would be involved, if at all, only to make the fistula be known sooner rather than later, but not actually altering the eventual course. This is of course assuming that you did not engage in anything kinky, such as use of foreign objects.

Jan

Hi~ I have had my fistula for about 4 yrs now. Sex is not a problem. My problem has been on going urinary tract infections. My fistula doesn't leak much if I drink plenty of fiber. It slows down the leakage. I travel a lot and fiber can be a bad thing with a j pouch. Rest Areas can be few and far between. So when I am on the road and not drinking fiber it seems to make the UTI flare up. I am on cipro right now for the bacterial infection. Yogurt helped me with the pouchitis. ( I was shot down on General Discussions for that one but, I think they missed the point on what I was saying. I don't feel real great right now and my mind is not expressing my thoughts too well. No one answered my fistula question on that forum either so I tried this one.) Again sex has never been a problem, but not feeling good can make your sex drive go down. I originally had a bartholan gland rupture (at the bottom of your vagina)...I too was told it was probably from a staple. I just joined this website and I am amazed a how many posts there are on r/v fistulas. If you want to ask me any questions please feel free too. I fought UC for many years, had the surgery in '96, had cronic pouchitis, now I have this stupid fistula that I thought I was the only one till I landed here. ~tina

Hi Malph
Don't know if any help live in England things might be different. My husband had Ileostomy in Nov 2006. After operation his bowel was send to a laboratory for testing to see if he had UC or Crohns after 2 weeks they confirmed it was UC. Also I am a little confused as to what a fistula is. From what read here the body forms fistual but my husbands fisula was formed by surgery. 1 week after he had his bowel removed he had what the doctors descibed as a leak from what was left of his rectum this poisoned his heart and lungs and he end up on life support over christmas. The doctors bought the end of what was left of his rectum to the surface forming what they called a fistual saving his life. Is this a fistual?
Another thing I'm confused about is in the pass 3 weeks my husband has started bleeding from back passage 3 times aday and finding alot of blood and mucus in his fistula bag the doctors say he has got UC again but I though if you had your bowel removed this could not happen, the doctors prescribed him pred-foam and ascol but they are not working (he only had one flare up of UC before operation he didn't respond to any steriods then). Doctor says because area UC is infecting is alot smaller UC won't affect his health so much but he started suffering again with alot of minor infection. The doctor also said that he might not be able to have his pouch created because of this and he really wants it. Sorry I don't know all the correct words for things everything happen so fast we are only now getting things together and I seemed to have more queries than answers. Any advice about UC after ileostomy really welcome
Wishing you health and happiness sue(figit)

What you describe is called a mucous fistula and yes it is basically a surgically created fistula. It is different from an ostomy because it is the upstream end. It is done in those who are very ill and it is dangerous to leave the retained rectum inside with a "blind end."

Any amount of colon/rectum that remains can still have active UC, even if it is disconnected from the rest of the intestines. Sometimes the disconnection makes it worse (called diversion colitis). Sometimes short chain fatty acid enemas can help the bowel heal by providing the needed nutrients. Not too much to do if he is steroid resistant though.

Jan

Thanks Jan
Husband says Thanks too
He is going to ask doctor about enemas

Hi Jan,
thanks for that- I was really hoping i hadn't caused this thing. and no, no foreign objects! I haven't even used a tampon since my very first surgery- just have an aversion to putting anything unneccessary into my body after all the invasiveness of surgery. Maybe I'm just scared too. I'm a bit of a wimp when it comes to all this.
Do you know what a bartholin cyst is?
Thanks for all your knowledge everywhere (!) throughout this site. I find it so helpful to come here and read- it's a little too easy to spend hours here though!
cheers,
seffy

Hi Mrs. Maverick,
Sounds like you have a regimen down- when you say drink fibre, do you mean metamucil in liquid? I've been taking metamucil in capsules, but i'm not sure how much to take, thus have started with just two in the morning.
Do you know the exact location of the fistula? I'm wondering if the location in the vaginal wall effects whether or not you/I/the general 'we have more problems with sex, with urinary tract infections (which I haven't had) or etc's.
Also, what is this Bartholin Cyst thingy I've read mentioned?
thanks for posting, and if I can answer anything let me know. I hope you're feeling better.
seffy

Hi Seffy~ I am sorry it took me so long to respond, I was out of town last week. Any who I don't like to take the capsules, they don't seem to work as well. They go right through you if you know what I mean. The Bartholin gland is actually there are two, they are located at to very opening of your vagina on either side.(they are like a salavary gland) For some reason, I haven't read why, but the fistula makes it way through them. I had mine removed...ouch We may need to post a newer message and see if we get an answer, I am curious myself. I know that is why I get the UTI. I have drank the crap out of cranberry juice this week. Thanks for your kind words. Have a great day. Oh, I drink about 3 tsp full of the power with plenty of water otherwise you get a belly ache. yuck.