Postby steiconi » Thu Jul 21, 2016 3:39 am
Update... I had the colostomy 14 months ago. It was great for 6 months--more energy, no pain, no infections, and I even got a handle on equipment so I didn't have to worry much about leaks. Then I got "disuse proctitis"--inflammation of the rectal stump due to lack of pooh travelling through. Apparently, pooh nourishes the intestines, and when it stops, they may get upset.
Amazingly, "disuse proctitis" has the same symptoms as my former "hole in scar tissue"--inflammation, pain and lack of energy, PLUS a bonus of rectal bleeding. Lots of bleeding.
Surgeon had 2 treatment suggestions: plain water enemas (didn't help) and another surgery to remove the rectal stump and anus. Almost went for the surgery, but the lovely folks over at UOAA gave me several great suggestions, and after 6 months of misery, I got it under control.
[If you want to try this at home: First I tried enemas with probiotics; they reduced the pain and bleeding by quite a bit. Then someone suggested Sodium Butyrate, a short-chain fatty acid believed to be the element of pooh the intestines crave; more improvements. Latest is Canasa suppositories (anti inflammatories), which seem to work even better. The Canasa is prescription only, and can be very expensive, up to $30 per daily or 2x daily dose if you have no insurance. The Sodium Butyrate is a much cheaper option, available OTC on Amazon.]
Upshot: I suspect that my problem before the colostomy was proctitis, not a hole (docs never saw a hole, they were just sure that was the problem).
And now I'm considering yet another damn surgery, to take down the colostomy. Maybe 2 surgeries if it turns out I need a temporary ileostomy while the reconnection heals. I'm playing phone tag with my doctor's office to get things worked out.
I don't think the old problems will be an issue; if they really were due to a hole, the hole has had time to heal. If they were proctitis, I now have treatment options to make them better. I'll still have to do enemas, but I've been irrigating the colostomy, so I'm still in the bathroom for an hour every night. Six of one, half a dozen of the other. And I really won't have to worry about leaky appliances!
I am not my disease.