I'm a 40 year old male, DX'd with UC back when I was 15. Have been blessed with periods of remission, but have dealt with moderately-active colitis symptoms for the majority of my illness. Lifestyle impacts have been minimal, but noteworthy. I've been on 3 short rounds of steroids in 25 years to control the worse flares. Otherwise, I've been on maintenance doses of Asacol as well as Rowasa and Hydrocort enemas as needed. I've had it much easier than many, for which I'm thankful.
Yearly colonoscopies revealed occasional psydo-polyps, random inflammation consistent with UC, and more recently chronically active areas of colitis between the transverse and descending colon. The bad news came with my last scope. Doc saw signs of low grade dysplasia, and the scope couldn't make it past a pretty inflamed lesion at the top of the descending colon. Some of the biopsies are consistent with pre-cancerous changes, but thankfully none came back as carcinoma.
Long story short, I'm evidently on borrowed time until something boils over in there, and my doc is recommending a total colectomy within a month to avoid cancer risks. My surgery consult is in a little over a week, and I've got lots of questions for the surgeon. Of course, I've been doing my own self-educating, and it's relieving to know that life can be pretty darn good without your colon!
I'd really like to hear from a few folks here who dealt or are dealing with similar histological circumstances, and what helped decide going with the J-Pouch versus a permanent ileostomy. Also, is a Barnett Continent Intestinal Reservoir an option for better or for worse, versus J-Pouch? My biggest questions and concerns at the moment are
- Getting through the initial proctocolectomy procedure. I'm hoping I'm a good candidate for laparoscopic surgery, but don't know what rides on that decision process?
- Pain. What is the timeline for how long the surgery pain goes away, enough to be off the meds, and give a good hearty chuckle with no jolts. For both the colectomy, and the take down surgeries?
- Recovery time. I'm hoping if all goes well, I'd like to be on my feet and working in an office within 3 or 4 weeks while whatever needs to continue healing, heals. Is this realistic?
- Reading about the number of trips to the bathroom after J-Pouch surgery is honestly scaring me. The anxiety of 'having to go' during flare-ups was bad enough! I also make a living as a part-time live entertainer - often 4 hours on end with no bathroom break. Sounds bleak during this break-in period (if you will) but would love some encouragement.
- I've never been diagnosed with Crohn's. Just UC. Does this make me a candidate for J-Pouch, for better, for worse? Anyone get *surprise* Crohn's after 25 years of UC and surgery?
I appreciate the insight, and opportunity to join the community!