Crohn's Disease Forum » Surgery » Stoma Subforum » Ostomy because of Fistulas?


02-09-2018, 08:10 AM   #1
lgpcarter
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Ostomy because of Fistulas?

Hoping to hear from people who decided to get either a permanent or temporary ostomy because of their fistulas.

My bowel disease is fairly well controlled at the moment, but my perianal disease is not, and nothing seems to really help. Cipro and Flagyl keep things from being totally miserable, but still having problems, and certainly nothing is healing. It has been over a year (this time around). Waiting on an MRI to see exactly where they are going.

If you did get an ostomy to allow your fistulas to heal - did it help? If you went the permanent route - did it solve your problems. I wouldn't want to do it and still be plagued with the same issues.
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Diagnosed in with Crohn's in large and small bowel in 2000. Fistulas followed soon after.

Seton placement (2) and fistulotomy December 2013. Setons removed July 2014. 3 more setons June 2018.

Laparoscopic Right Hemicolectomy July 2016, 25 cms removed

Current meds: Humira, Entyvio every 4 weeks, Levofloxacin 750 mg, Vitamin D

Previously: Remicade, Simponi, Pentasa, Sulphasalazine, Entocort, Stelara, Methotrexate, Prednisone, Imuran
02-09-2018, 02:27 PM   #2
cmack
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Hi lgpcarter,

I hope you find answers, I chose to refuse the temporary ostomy for similar issues and I may have been wrong. I wish I knew the answer myself.


Regards,

Chris
02-10-2018, 09:00 PM   #3
lgpcarter
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Thanks Chris. Think I have a new one that just opened and pretty discouraged. Also tired of taking Cipro and Flagyl
05-07-2018, 07:19 AM   #4
Dunbar
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I opted for temp colostomy in hopes of relieving the pain and closing up fistulas. Well, it's a sort of win. The pain disappeared, oh boy most definitely a win there, and while three of the perianal fistula Did close up, the Big One that I most wanted healed, rectovaginal fistula has not. It's been two years so I'ma thinkin it ain't likely to happen. Given that I do have fistuizing mod/sev Crohns, I think I'll stick with the colostomy. If I Never have to feel that pain again, it will have been worth it for that alone. And I can say that a flare has never been so easy to deal with so there is a silver lining. ; )
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05-07-2018, 08:44 AM   #5
lgpcarter
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Thank you! I don't have an RV one (though latest one is much closer to lady bits than I would like).

Seeing the surgeon on the 18th to discuss options. I think my GI is thinking more setons, but I am concerned about incontinence.

I thought most people with Crohn's ended up with ileostomies rather than colostomies?
05-31-2018, 08:18 PM   #6
DCCrohns
 
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I had (and still have) a temporary ileostomy for fistulizing Crohn's. Much like you, everything else is fairly well in control with biologics (now Stelara) but I have been plagued by fistulas.

After trying setons, fistulotomies and a regular advancement flap, I opted for the ileostomy almost two years ago...but as part of a plan to have my large fistula repaired with a gracilis flap a few months later. The good news is that the gracilis surgery (though brutal) helped heal that fistula. The bad news is that I subsequently developed a RVF (the first for me) after. Since then, I've had one surgery to try to correct and modified my medicines to no avail.

I was contemplating a Martius flap but I just enrolled in a clinical trial at the Mayo Clinic that is leveraging stem cells. I have a procedure coming up to implant them (via a plug) in a few weeks and, if it goes as planned, my hope is it will heal this fistula and I can finally be reversed.

Of course, there is always the risk of developing new ones but my hope is that we have the medicines right and I can avoid that.

An ileostomy takes some adjustment and my hope is not to have go permanent, but I will say that the inflammation and issues I had before have not been an issue since.

Hope that perspective helps!
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Diagnosed with Crohn's: 2002
Past Meds: Pentasa, Remicade, Cimzia, Asacol, Cipro, Flagyl, Lialda, Humira
Current Meds: Stelara, Azathioprine (150mg/day)

Surgeries: Fistulotomies & Seton Placements (9/2011, 1/2013 & 8/2013); Advancement Flap (12/2013); Temp Loop Ileostomy (7/2016); Fistula Repair w/ Gracilis Muscle (9/2016); Fistula Repair (12/2016); Seton Placement & Stem Cell Harvesting (4/2018)

Last edited by DCCrohns; 05-31-2018 at 09:24 PM.
05-31-2018, 09:20 PM   #7
lgpcarter
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Thank you! This helps so much. I havenít looked into flap procedures very much at all. I should.

Going in for EUA and setons June 19. Probably no fistulotomy because they are afraid of making me (more) incontinent. Adding Humira to the Entyvio, maybe as much as 2 doses weekly.

Looking into clinical trials for stem cells as well. Cx601 has showed a lot of promise in Europe. Might be a while before we get the trials in Canada. Hoping for something soon.

Thanks again.
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