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Darned sneaky disease!

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Ulcerative Colitis
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Posted 5/7/2015 7:38 PM (GMT 0)
So I've been going along, happily in remission for nine years now. Sometimes I almost forgot I had UC. My recent c-scope prep made it very clear that sometime in the past three years I've developed a recto-vaginal fistula. Just made an appointment with my GI to start dealing with this fun little effect.

UC truly sucks.
Posted 5/7/2015 8:07 PM (GMT 0)
Yup, it's the disease that keeps on giving! Even with having my colon removed, I wouldn't be surprised in the least if something else pops up out of the blue one day. Hope it gets resolved quickly.
Posted 5/7/2015 9:29 PM (GMT 0)
It's so weird you developed one especially with being on Remicade when Remicade actually works to heal RV fistulas...Humira seems to have cleared mine up but I'll get confirmation this Monday when I see my GI for my last MRI results...

Did you notice any symptoms with your RV fistula Judy? First thing I noticed was air passing through the vagina and it was a horrible feeling cuz as much as I didn't want to believe what it was, I knew it was that darned fistula...first one I ever had which I suppose is pretty good considering how long CD has been attacking my colon and rectum...it was one of my worst fears that sadly came true...just thankful that it seems Humira has cleared it up, haven't noticed symptoms of it since shortly after starting Humira.

Hope your GI is able to get it taken care for you I'm just so surprised that you'd develop one while being on Remicade.
Posted 5/7/2015 9:55 PM (GMT 0)
Oh eek! I've never had this (yet!) but sorry to hear you are now dealing with this. Have you noticed any kind of symptoms from it?
Posted 5/7/2015 10:56 PM (GMT 0)
I'm so sorry Judy. It is always something I am worried about getting.
Posted 5/8/2015 5:14 AM (GMT 0)
Oh, no! You might want to look up that thread Bess started on "Vaginal problems with UC" -- because mucosa seems to be messed up in both digestive & reproductive organs in a lot of cases, so R/V fistulas may be part of a larger picture that researchers haven't recognized yet. Gyn just told me at latest apptmt that there is now a strain of drug-resistant candida to test for, yuck. / Old Hat (34 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 5/8/2015 12:09 PM (GMT 0)
I'd had a sort of chronic vaginitis with discharge, but no idea until my prep. When the prep was cleaning out the vagina as well as the rectum, I knew immediately. That was the only symptom I had. (It never had a fecal odor, but then my stools often don't either.)

Like my doctor once told me, I never get normal things, it's always something weird.

Old Hat, I'm post-hysterectomy so the mucosa had changed already.
Posted 5/8/2015 4:43 PM (GMT 0)
Oh wow, what a way to find out you have an RV fistula that sucks!!!! I was passing gas through mine that's how I knew and that was scary in itself but to actually have prep debre pass through must have been terrifying for you to experience it that way without even knowing what was going on. It's terrible that you developed that fistula but especially while on biologics! I hope you're doc finds a way to fix it all up good for ya!!!!

(((HUGS)))
Posted 5/8/2015 6:58 PM (GMT 0)
HOly moly, geez, this is terrible Judy! I have fissure where I had FISSURE and a FIstualoty Surgery, two sugeries, now another fissure! But I'm on Advil, it was recommended at the same take as my last sugery, and boy what a difference in just 5 days! I know that won't help you heal but it could take down some of the inflammation if you can take Advil. You're in my prayers that's for sure!!
Posted 5/9/2015 3:56 AM (GMT 0)
"Chronic vaginitis with discharge"-- hmmm. And your gyn never suspected any connection to IBD? That really bothers me! Instead of doctor stating you always get something "weird", he should hold his tongue because it may already be out there bothering other UC women, but going unrecognized/untreated. That thread Bess started where several women complained about painful trans-vag u/s in their 40s/50s was very revealing; maybe UC causes mucosal thinning in that organ, too, which can increase chances for fistulization. (I mean earlier onset of thinning than what generally occurs post-M.) / Old Hat (34 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 5/9/2015 11:22 AM (GMT 0)
This really is the disease that keeps on giving! Sorry to hear this and hope it clears up quickly.
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