HealingWell
Search Close Search
☰

Worried about my mom--r/v fistula, possible Crohn's

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/2/2014 9:29 AM (GMT -5)
Hey everyone. My mom is currently in the hospital being treated for a rectovaginal fistula. about three weeks ago she developed signs of an infection with severe cramping/pain in her colon. She was diagnosed with diverticulitis and given cipro/flagyl. This didn't help. She still felt bad and seemed to be experiencing many of the symptoms I have with a UC flare. She went to the ER yesterday and they discovered the fistula. She is currently on IV antibiotics, and they will do more tests to see if she requires surgery in two days after they've dealt with a bit if the infection. It was mentioned that her original diagnosis of diverticulitis might not have been correct (her last colonoscopy less than a year ago showed no diverticula) and maybe she has Crohn's. I know it isn't that uncommon for IBD to be diagnosed in one's 60s, and she does have a daughter with UC. Obviously, I'm very worried, and I'm hoping your experiences can help me.
-Must surgery for a r/v fistula result in a temporary ostomy?

-Would you insist on a colorectal surgeon for this? (There isn't one in her town, but she is a few hours from Cleveland, Columbus, other areas.)

-Does it seem odd, they are mentioning Crohn's, but she hasn't been seen by a GI in the hospital?

-Was anyone else's first indication of Crohn's a fistula?

-Any other thoughts, advice, experiences you can share would be appreciated. Thanks in advance.
Posted 5/2/2014 2:12 PM (GMT -5)
Wow, surgery seems to be a tiny bit dramatic for the fistula right away. Have they considered putting in a seton? That's what I have in mine. When we discussed surgery to fix it, we would NOT do an ostomy to start with. We would only go to that if after 6 weeks the surgery hadn't healed yet.

Yes, most definitely insisted on a CR surgeon. You do NOT want a regular surgeon doing this. My regular surgeon once told me that if a regular surgeon thinks he can fix a RV fistula to get a new surgeon immediately because he's an idiot and incompetent, lol. He then referred me to a CR surgeon. We ended up not doing the repair because two months before it was scheduled I got pregnant.

I have a seton in my RV fistula; it's been there two years and I'm not really having any problems with it. All CR surgeons I've seen have said I can leave it in indefinitely, and that's the plan. The risk of an ostomy is too much for me; I don't want to risk the temporary ostomy becoming permanent because I flare or something and we can't reattach. They told me any inflammation at all would mean they wouldn't be able to reattach, but sometimes the separation itself will cause inflammation even if you don't have Crohn's. So I just really don't want to risk that. The seton is a million times better than a bag.

She should be seen by a GI if they're discussing Crohn's. She should actually probably have a colonoscopy again.
Posted 5/2/2014 2:30 PM (GMT -5)
Thanks. Right now I think they are hoping it might heal on its own if they can clear up the infection with antibiotics. She is also on a liquid diet for bowel rest.

I agree she should be seen by a GI. I would think discovering the cause of the fistula would be important and could greatly influence the course of treatment. Maybe remicade would be an option if it is Crohn's?

Interesting point about the temp. ostomy becoming permanent. I will definitely encourage her to try to find a CR surgeon as it seems her only surgical treatment option, if it comes to that, wouldn't have to include a temporary ostomy which is what the general surgeon is recommending.
Posted 5/2/2014 9:21 PM (GMT -5)
Remicade is a GREAT option - it has a hugh success rate of healing fistulae.
Posted 5/4/2014 7:31 AM (GMT -5)
Yes - see a colo-rectal surgeon!! I live in Cols. and travel to Cleveland, I see Dr. Tracy Hull, who I highly recommend. I have had an RV fistula for 3-1/2 years now and have had a seton for 2 years.

Having an RV fistula does not necessarily automatically mean you have Crohn's or IBD, but that is indeed a possibility. I have a j-pouch - due to UC and removal of my colon many years ago - and had inflammation with the jpouch for many years which apparently turned into an abscess/fistula. Antibiotics were used for the first year while being treated by a GI in Cleveland, and he then turned me over to a surgeon who put in the seton.

I agree it's much too early to be considering surgery of any kind with the exception of a seton placement. The seton will help with drainage and thus calm down any infection. My surgeon will not do any surgery until the fistula is "healed", that is, the inside skin is no longer infected. Not likely in my case, but that is due to jpouch complications, etc.

RV fistulas are very tricky, you need someone very experienced with them. Highly recommend the Cleveland Clinic.
✚ New Topic ✚ Reply