Ostomy because of Fistulas?

[lgpcarter]

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.

 

[cmack]

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

 

[lgpcarter]

Thanks Chris. Think I have a new one that just opened and pretty discouraged. Also tired of taking Cipro and Flagyl

 

[Dunbar]

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. ; )

 

[lgpcarter]

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?

 

[DCCrohns]

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!

 

[lgpcarter]

Thank you! This helps so much. I haven’t 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.

 

[geerlingguy]

Just got total colectomy with proctectomy (proctocolectomy) two weeks ago; I'll let you know how things turn out.

I had a complex perianal fistula and two abscesses, both needed setons, and I also had a bevy of other perianal complications. Plus, Crohn's and a bout of CMV colitis destroyed my rectum all the way up my descending colon... so it all had to go!

So far the bag is manageable (still learning how to live with a big thing hanging on my belly though), but the pain/annoyance of the stitches on my backside are the worst of it.

The surgery and recovery was worse than with my partial resection a few years ago, but I lived through it

 

[Bufford]

I lived with fistulas for years until I had a major infection 17 years ago that was life threatening. The infection proved to be a major complication, and the surgery had to be pushed back until it was better managed.
Surgery and post surgery was brutal, but as time went on things improved with treatments, such as Aza and Cipro along with others. During surgery half my colon, the appendix and some small bowel was removed being rotten.

Years later the fistulas are healed but the rectal area does bleed some. I take Salofalk enemas to keep the rectal area under control, and I still have the stoma.

Life is manageable so I'm not rocking the boat. The scar tissue and damage in my rectal area may one day require a total proctectomy should it become cancerous. I have had the talk with my GI and he would rather avoid surgery until the time its needed since I am older.

 

[lgpcarter]

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.

How is the stem cell trial going?

 

[DCCrohns]

How is the stem cell trial going?

Thanks for checking in! I am about two and a half months out from receiving the stem cells. Right now it is just a waiting game to see if I heal (fully, partially or not at all). My two-month MRI didn't show a significant change but my doctor thinks there may be some improvement based on her exam. No side effects or anything though.

My hope is at least for some improvement and, if not fully healed, we have discussed a similar procedure but with donor cells injected directly. Waiting for that to be cleared by FDA and then the hospital but other fistula patients have had good results (and it may be better, as the stem cells are from a healthy subject).

And the waiting game continues..