This topic is about dealing with the decision not to reverse an ostomy due to rectal inflammation. It explores what steps can be taken next and shares advice from others who have faced similar situations.

- The original surgery in 2016 was for diverticulitis, which involved removing a portion of the sigmoid colon and creating a colostomy. There was an expectation of a future reversal, but it was advised not to wait past the age of 79.

- Four years later, a colonoscopy revealed significant rectal inflammation and stricture. Surgeons determined that the tissue was too fragile for a safe reconnection, as it posed a high risk of leakage, infection, and serious complications.

- The person delayed the second operation partly due to fear of another lengthy hospital stay and now feels the opportunity for reversal has passed.

- The current plan involves having a colonoscopy every two years for cancer surveillance.

- During a recent colonoscopy, the stricture was dilated, which helped return the output to a "new normal," but the idea of lifelong monitoring without the possibility of reversal is distressing.

- The person is seeking experiences and guidance from others in similar situations.

Additional information includes:

- The person was diagnosed with diversion proctitis after two symptom-free years. Fistulas healed with Entyvio infusions, but rectal inflammation and occasional bleeding persist.

- There is a strong desire to avoid rectum removal.

- There is a question about why surgeons did not emphasize the risk of diversion proctitis and the need for a sooner reversal.

- An upcoming consultation at the Mayo Clinic is planned, with surgery to close a hernia, close the current colostomy, remove diseased bowel, and create a new right-sided ileostomy. The person is currently on prednisone and two unspecified antibiotics while awaiting surgery.

Advice and insights shared by others include:

1. Reversal is not always the better outcome.
- Some members highlight that reversals can fail or lead to Low Anterior Resection Syndrome (LARS), causing long-term bowel incontinence. A well-managed stoma might be preferable to unpredictable post-reversal function.

2. Age and overall health are more important than just age.
- Surgeons may be cautious with age, but fitness, other health conditions, and immune status are crucial factors.

3. Be your own advocate.
- Emergency surgeons focus on immediate issues, and later problems like diversion proctitis might not be fully explained. Patients should seek comprehensive assessments and discussions of future options before and after surgery.

4. Medical management of diversion proctitis and rectal inflammation.
- Rectal budesonide foam can reduce bleeding and inflammation. Oral prednisone can control discharge when topicals fail, with a slow taper recommended. Dapsone has been reported to lessen mucus/discharge. Biologics like Remicade, Humira, and Stelara have been tried, with varying results.

5. Surgical considerations if rectum removal is proposed.
- Proctectomy can eliminate bleeding/discharge but is major surgery with infection risks, especially for those with weakened immune systems. Seeking second opinions at high-volume IBD centers is recommended.

6. Monitoring instead of colonoscopy.
- If only a short rectal stump remains, annual flexible sigmoidoscopy might replace full colonoscopy for cancer surveillance.

7. Psychological support.
- It's important to acknowledge disappointment but focus on regained stability and managed cancer/infection risks. Peer forums can offer practical tips and emotional support during decision-making.