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Hi, I have this type of fistula. I've had it since 2006. Dr. Shen has tried every year to use "bear claws" to close it at the tip of the j-pouch w/ no success. I don't have a lot of drainage from it - usually can put a tissue folded over it and just place a new one when needed (not very often).
My last pouchoscopy was this past Friday (May 4, 2019) and he is going to now try hyperbaric oxygen therapy. I don't know if I'll have any success with this or not, but I'm willing to give it a shot (if insurance will cover it - I hear it's quite expensive). I'm hoping it will be the one that finally works.
I do not want to lose the j-pouch or try to have it surgically repaired as Dr. Remzi says he cannot guarantee I won't end up with a permanent iliostomy, so I just try to live with it. Hopefully, this HBOT will work!
I would love to know if this gives you good results! My husband has a j-pouch (that's how I wound up in this group), but the one in our family with an enterocutaneous fistula is our daughter. We have tried so many things trying to avoid another surgery, but have yet to get it to close. We recently started oxidative IV therapy hoping it will do the trick. I'd love to try HBOT for her!
Best Wishes!! I truly hope you have success!
I found this old post looking for anyone with an enterocutaneous (EC) fistula and will gladly chip in with my experience!
Akteacher, did the hyperbaric oxygen therapy work for you?
Peaches, did any of the treatments for your daughter worked?
I'm a J-poucher since 1992 and have had a great run until 2019 when I got a 2" skin abscess by the old stoma...after having it lanced it kept building up pus and forming a "new abscess" so I maintained it by draining it 2-3 times daily. It's low output with 1-2 ml draining everyday...no fecal matters, just a mix of yellow pus and blood. So it's been over 3.5 years since it was lanced and I have yet to have it officially diagnosed as a fistula as none of the MRI, CT-Scan and US to abdomen I had done revealed it. Yet, I feel a tubular shape connected to the skin - by the old stoma -...As for a fistulogram, would it even be feasible to insert liquid in a pin size hole?
In any case, I'm pretty confident that I have an EC that's linking my j-pouch to skin on my abdomen. I'm not taking any medications, I eat well and lead an active life at 49 years old. So, as far as complications, I've had very little. Like I said the output is so little and the fistula seems so stable that even my GI advised to leave it alone. My concern is that I could potentially get sepsis while swimming in a lake - which I have yet to do since...- or using my hot tub - water chemistry very well maintained - yet, I won't do any water related activity without covering the fistula entry with gauze and waterproof tape ...Again, no complications there except for more acute tenderness and redness at times... Still I'm always worried about a looming sepsis...
I take great care to it, shaving surrounding hair and keeping it clean regularly and I'm not using any bandages.
What do you think? Can I continue to live with this fistula without medications or surgery for the rest of my live?
I still have my fistula. I don’t let it stop me. I live by the ocean & go in frequently. I don’t cover it when swimming. Mine doesn’t ooze too often, so I only cover it with a folded tissue. I can’t handle the tape.
I was not able to do the hyperbaric oxygen treatment as insurance did not deem it necessary (wish they had to live with it, let’s see what they would). Dr. Shen told me it would be denied & once they denied it his office would resubmit. However, Dr.Shen was in the process of moving to NY & when I called about it being denied, the nurse basically told me it wasn’t a priority since he was no longer with CC.
I continue to fly once a year to NY to see Dr. Shen. Saw him this past April for a pouchoscopy & nothing new to try to close it. I guess I’ll continue to see him & hopefully one visit he’ll have more options.
I think it’s been about 10 years living with it. Dr. Remzi said as long as I could deal with it to just leave it alone. Usually no problems with it. Sometimes the area gets red & tender, but nothing too bad to handle. If I do opt for surgery or pouch redo, there is no guarantee I won’t end up with permanent ostomy & that I do not want. So, I’ll hold out & pray someone will develop a fix for them. 🙏
Thanks for your input Akteacher! It's hard to find info on the web and your experience is so valuable to those like me who are trying to navigate thru this. I agree, I definitely wouldn't risk losing the pouch over something that's not yet an impediment to my quality of life!
10 days after my first takedown, my surgeon removed my staples. 6 hours later my undetected fistula started draining feculent matter thru the wound.
thank god I went the ER where the CT scan revealed the fistula. (I knew something was up, because day after first takedown I could feel the flow of my intestine right under the wound. Surgeon ignored my concerns.)
anyhow, I had emergency surgery and surgeon told me and my wife that I could wind up with a permanent ileo. The surgeon managed to reconnect me without a temp bag, despite the sepsis that nearly killed me.
14 months later, I am alive, no bag, and no chance of colon cancer!!
as for anyone else, I would exercise extreme caution with this condition. Not being a doctor, I would not tell anyone to live with this and take their chances.