(Question for reconnected pouchers at the bottom)
I've been on and off forums since 2004. Pouch for 15 years. Have had many ups and downs. Last year, just as the pandemic picked up in March i was hospitalized for a combined month after being released and going back to the ER about 4 times for a small bowel obstruction that wouldn't relent. (Doctors wanted to try drugs first, drugs failed). Lost 35 pounds in one month.
Turns out my Crohn's is the fibrous-stenosing kind. Scar tissue and adhesions in abundance. My small bowel had developed a rock-hard fibrous stricture and was essentially clamped down about 20cm north of the j-pouch. (This would have occurred whether or not i had a pouch, and may occur again in the future). Surgeon said she could feel it in her fingers like a rock in the bowel.
They gave me a temporary ileostomy (due to the fragile bowel, it was bloated and weak) after weeks of drugs, TPN, and she spent hours lysing all of my abdomen adhesions and I kept the stoma for 15 months (due to numerous COVID reschedules in the OR) until 3 weeks ago!
I also had 4 separate upper AND lower pouch dilation procedures to stretch the inlet and outlet before takedown. The inlet was so small they couldn't pass a pediatric scope through it. They got it stretched to 12mm finally on the 3rd try. (Will probably do one more time)
Got reconnected and the stoma takedown. Surgery went well. She did the takedown completely laparoscopic through the stoma, including more scar tissue lysing. I wasn't passing gas though. Just once in 5 days. First bad sign. Immediately developed a post-surgical ileus small bowel blockage (the bowels refused to work or pass gas, and dilated) and went back to the ER after discharge. The ileus resolved after a day on NG tube and the bowels fully woke up.
Currently, 2 weeks post-ileus discharge able to eat some soft solids, egg, potato, shakes as to keep pressure off the new small bowel anastomosis takedown (stapled). Will advance to meats, more complex meals probably in one more week at week 4. It's a 16-year old pouch and should know how to handle food. But sitting dormant for 12+ months made it "lazy" I think. The first week was rough with pain, straining, and urgent frequency. Loud bowel sounds. I think the ileus dilated my bowels and made them inefficient. Now i feel some hope. I do go about 3-4 times after every meal to "get it all out". But it's getting better and i sleep 5 hours at night.
So, question... Has anyone here been reconnected after a diverting ileostomy? Did your old pouch remember how to do its job? How long did you wait to eat a real meal (let's say a crispy chicken sandwich or pizza slices, im craving it!) I'm feeling a little more hope now, but it's been a rough year. My old pouch wasn't my best friend, pouchitis, stricture, etc, but i could 98% eat what i wanted to.
Thanks for reading my pouch story!