Hi, rectum-less friends. My loop ileostomy was reversed March 2013 (j-pouch, which I assume disrupted the sigmoid).
I have never been able to re-establish reasonable bowel function. Defagram showed mild pelvic floor issues but none of the real coordination problems that would indicate biofeedback would help. Also, colonscopy 9/2016 was normal (except for one polyp).
After trying every technique and med that turned up in my research (and almost every fiber supplement or Rx targeting motility usually produced bowel movements at about once per week, meanwhile causing pain), I started doing the daily tap water enemas (in a.m. before work), as discussed in this forum. For several months this was satisfactory, and I could eat what I wanted, just avoiding large servings of bean and entree-size green salads). After an enema, I would have rectal/pelvic floor pain/spasm for about an hour afterward. Once the pain let go (usually after sitting on a hot pad and sometimes taking small dose of oxycodone), I would be fine for rest of the day. I could even skip a day.
After a while (months), the enemas stopped being enough. I have gut pain that slowly builds throughout the day and also builds during the night. Morning enemas started to mean another enema after work. Two a day just seems intolerable. I switched to after work to keep it at once a day, but the pain is the real problem. Sometimes just bloat during the day, sometimes acute pain/great pressure just diffuse everywhere below the belly button, sometimes localized, feels like having a bayonet twisted. Almost every night, I wake up in pain. On a good day, this is not too long before I'd have to get up anyway. On bad days, it is the middle of the night and getting back to sleep is a problem.
I know pain meds decrease gut motility, but I could not function without them at this point. If I'm having to do daily enemas, anyway, is motility even a necessary goal? If the real problem for the bloat/pressure/bayonet pain is trapped gas, would I be better off going low residue diet and avoiding all gas producers?
Anyone in a similar situation?
Thanks for any help!
5/2012 (age 48 at dx) Stage 2a T3N0M0 mid-rectum
8/2012 6 weeks 5FU continuous and radiation 5 days/week
10/2012 surgery: LAR and temporary loop ileostomy. Path: no residual primary tumor; nodes 0/6; positive for perineural invasion (Stage upgraded to 3b because of perineural invasion)
11/2012 - 2/2013 Chemotherapy modified FOLFOX6 - Oxaliplatin, every 2 weeks for 8 cycles
3/2017 still NED