Deciding between ileostomy or fistula surgery/seton

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Regular Member

Date Joined Dec 2008
Total Posts : 24
   Posted 8/3/2010 5:42 PM (GMT -7)   
Ive had Crohns for 11 years, with my right colon removed 3 years ago. since then ive been on remicade and humira, and been on and off the SCD diet for 8 years. i developed rectal ulcers, skin tags, and a rectovaginal fistula.
Over the last month ive had two abscesses drained, one on each labia. one of them is a fistula and isnt healed yet. my doctors are strongly recommending an ileostomy. im worried and scared. my intestines have some strictures but dont give me much trouble, but they gurgle a lot. my BMs are usually mushy, sometimes urgent, sometimes a little blood. im most worried about the fistulas, getting them healed and the fear of getting more.
Anyones comments or experiences are appreciated. thank you.
44 yo female, crohns 11 yrs, UC 10 yrs previous, very anemic
humira, 6MP on hold until abscess heals, following SCD diet

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 8/3/2010 6:11 PM (GMT -7)   
Ow, Lynn, that's horrible. I'm so sorry you're having such a hard time.

I can't advise you on ileostomy vs seton surgery. The seton surgery is reversible whereas the ileostomy will be more permanent... but I think I'd be inclined to go with my doctors' suggestions.

Mind you, an ostomy doesn't stop you from getting more fistulae. We have had people here who've continued to have issues after surgery.

Sorry I can't offer more constructive advice than that. Have you thought of popping over to the ostomy forum and talking with the people there? They might be able to offer some extra insights for you.

Best wishes,

Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 8/4/2010 3:36 AM (GMT -7)   
I just posted my story on sr5599's latest thread...sorry you are going through all of that! Rectal disease is so painful:( and fistulas just plain sux!

I had luck with Remi (for my fistulas) for a short period of time but the only thing that truly made a difference for me was my proctocolectomy (removal of the colon and rectum).

You could try a temporary ileo but ivy6 is right that the fistulas can continue their work...please pop over to the ostomies forum...we have some wonderful posters who will answer any questions/concerns you have!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008

Regular Member

Date Joined Dec 2008
Total Posts : 24
   Posted 8/5/2010 8:03 PM (GMT -7)   
ivy6 and ohio76,

thank you for your advice and positive thoughts. i'll repost at the ostomy forum.


Regular Member

Date Joined Sep 2006
Total Posts : 241
   Posted 8/10/2010 11:05 AM (GMT -7)   
Hi Lynn. I too, have the recto/vaginal fistula and have been miserable. I have had 2 flap repair surgeries and one seton placement, none of which worked. My doctor now wants to create a temporary illostomie, take my inner thigh muscle and wrap it up to the fistula. He said it is a very strong muscle and they have alot of success. Then a couple of weeks later, he will reverse the illostomie. I haven't decided yet because it is a 6 week process and it doesn't fit in my schedule right now. I'm not sure if anyone else has had this done but it would be interesting to know. Good luck!

Regular Member

Date Joined Mar 2010
Total Posts : 23
   Posted 8/31/2010 3:43 PM (GMT -7)   
Hi Tia,
I did have a few failed attempts to repair my rv fistula. The final of 5 surgeries worked to repair it...Thank God! I did have the gracilis muscle removed from my thigh and transplanted into my pelvis to repair the fistula. I have to say it was a very painful surgery but I knew it was my last resort & it worked. The success rate is very high. I did have an ileostomy for 8 months and 3 months after the gracilis muscle graft ...i was able to have my ileostomy reversal surgery. If you have any questions..don't hesitate to ask. I was in the hospital for that surgery for a little over 2 weeks because infection set in. You will need help after the surgery since there the sight in my thigh and pelvic area had to packed a few times a day. My husband was my godsend in all this. Much luck to you.

Veteran Member

Date Joined Aug 2008
Total Posts : 5922
   Posted 9/1/2010 9:22 AM (GMT -7)   
     I suffered with ulcerative proctitis for twelve years.  I ran the gamut of meds before deciding to go with the total colectomy and permanent ileo on June 28th.  I've had some complications and today am going for a CT scan of the pelvis and abdomen as I have been bleeding from my vagina and also have discharge.  There is a terrible pressure in my anus (the doctor left the anus intact).  I went to my surgeon last Wed and he put his finger up my anus and I almost went through the roof.  I was in pain for the rest of the day and haven't had any relief since.  Also went to the gyn doctor but because of pain he couldn't do a PAP smear.  That is why I am thinking this may be a vaginal/anus fistula. cry
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