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Reply to "enterocutaneous fistula"

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. 🙏

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