i have read a few posts here on some specific issues and really appreciate everyones input.
I dont know really where to start with this but i guess i will start at the beginning.
I had emergency Colon resection and Hartman procedure in early May 2011 after my sigmoid colon perforated due to Diverticulitis complicated by Ulcerative Colitis.
I had been relatively symptom free on the UC for most of the 20 years since i was diagnosed. None of the flare ups were even close to the original onset and easily controlled by short doses of Prednisone.
my problems today are mainly a result of a poorly designed Stoma.
It is less than flush and because i have extra weight - there is a crease right at the horizontal point of the stoma.
Needless to say, even with crease packing and convex flanges, i still have leaks which cause a LOT of skin irritation.
Due to the cost, I refuse to change my setup more than 2x week unless i have a leak beyond the barrier (which has only happened twice since surgery)
Another issue i have is the material of the barrier seems to disintegrate from the stool or blood discharge so it doesnt matter how close i cut the stoma
opening, it always expands.
I use Hollister products right now as they seem to be the best but i get skin irritation from the barrier adhesive (not the boundary tape).
I tried Convatec but they have the mold-able
openings. While they do not cause the skin irritation the Hollister does, the mold-able portion seems to unfold back over the stoma
opening which causes severe leakage.
a major concern i have is that the stoma is stenosing (growing closed). I have had it dialated by the surgeon twice (to be able to the colonscopy as it was too small for the scope to enter). I have attempted to dialate it myself with a gloved/lubricated finger but generally cant get past my first knuckle of my baby finger. Ingeniously, I considered my options, and went to a sex toy store and bought a (very small) butt Plug (a bit of irony there somewhere) and the shape of it with KY jelly seems to do the trick of keeping the stoma some-what dialated, and bleeding like a stuck pig, but not as 'much' of a concern. However, it still weighs heavy on my thoughts of returning to work.
a recent colonoscopy shows the upper area from the stoma is disease free and the rectal stump shows signs of UC but they are microscopic and only seen in the biopsies (so, much less prevalent than pre-surgery where they were visible to the eye).
I am hoping to have the Colostomy reversed but with it being elective surgery, and the fact that i work on a cruise ship for 4-6 months at a time, I think it wont be reversed until the new year at earliest.
anyway, i am not sure what I have written here but i do have lots of concerns.
1. flush/retracted stoma causes lots of discomfort due to poor fitting barriers.
2. denudded skin around the stoma that does not heal no matter how careful i am at change time.
3. stenosing stoma - i literally have to dialate this at least 1x month to keep it from growing over. Plus i am on permanent Stool softeners.
4. concern of not being a candidate for reversal due to UC still showing in microscopic biopsies. (I see the reversal surgeon on monday Sept 12 to know better) This is a Quality of Life issue for me. I would rather have a risk of recurrence for the next 20 years and live without the Problematic Colostomy Bag than live the way i do today.
5. concern for my job. I have a fit for duty letter submitted to my employer's medical department but have been waiting almost 3 weeks for a response. They originally rescinded my job offer 3 1/2 years ago due to the fact that i even have UC but i was able to convince them (with my GP's help) it was a non-issue but now they know it is (was?) an issue so my decline me to return to work (with or without the colostomy bag)
does anyone have any experience with any of these issues that can help me find some positive from it all?
it can be very depressing and i often fear the easist solution is to let my life insurance look after my debts and make an exit.
48 year old Single Canadian male
UC 20 years - mostly symptom free
scared by the unknown of my medical future.