Posted 3/6/2018 7:51 AM (GMT -7)
Hi valli - I had Step 1 of 2 on Dec. 28, J pouch formed, loop ileo put in. The plan was to reverse me to the j pouch in 6-8 weeks, but we were surprised by cancer in the colon and a few lymph nodes when the surgeon got in there. (He cut out everything that could be detected; now I am going through 6 months of preventive chemo.)
Because he chemo causes D, my surgeon told me that it would be cruel to reconnect me until I am done. So I have my loop ileo for probably 8 or 9 months. Sigh! Reversal likely late August or even September.
So, I can't compare; I've ever had an end ileo. At first, the loop was tough, because it was flush with my skin and the opening pointed downward, like a faucet. I learned some tricks, like cutting an extra Eakin ring in half and putting it under the stoma, then an extra ring on top, and then using VERY convex wafers and one of those belts the bag companies have, all to keep the skin around it pushed in.
Now the post-op swelling in the area has gone down and the little guy sticks out enough that I just use one ring and the convex wafer. Because the chemo can affect skin, I am changing every 3-4 days.
I had found the liquidy output a real challenge during a change, no matter what time of day I tried. Now, 10-15 minutes before I change, I take an Immodium and eat 7 (yes, seven!) marshmallows. That clogs it long enough for me to get it cleaned and changed.
So... it's very doable; my guess is that you just need to look at it as a completely new thing.... If I can help any when you get to that point, tag me here! I usually at least lurk each day.
Age 62. Diagnosed UP 1983, UC 1986
Step One surgery on 12/28/17.
Surgery: planned. The colon cancer they found: a surprise.
Prior meds: sulfasalizine, Asacol, Delzicol, Lialda,
6 MP, Humira, Metamucil
two hips replaced thanks to pred.
Bentyl as needed as of 8/31/17