This topic is about someone who is dealing with the emotional and physical challenges of facing a second surgery to remove the rectum after having an ileostomy due to ulcerative colitis. Here are some insights and advice shared by others who have been through similar experiences:

- The person recently had a follow-up with their stoma nurse and received some good news: their overall health is improving, and the stoma looks healthy. There is only a small unhealed area being treated, with another review scheduled in a month.

- However, they are disappointed because the biopsy results on the removed colon are not yet available. These tests were done to rule out Crohn’s disease, although previous tests have indicated ulcerative colitis.

- The bad news is that because ulcerative colitis also involved the rectum, the remaining rectal stump now carries a cancer risk and needs to be removed. Initially, the rectum was left intact in case of a future reversal of the ileostomy, but now another operation is recommended.

- Emotionally, the person feels shocked, frightened, and exhausted by the prospect of another surgery after believing everything was finished. They wonder if crying is normal, worry about their husband’s difficulty in seeing or accepting the stoma, and feel hurt about having to “hide” it. Persistent mouth ulcers add to their distress. They ask if others and their partners have struggled with similar feelings and how they coped.

Advice and insights from others include:

1. Emotional Reactions and Mental Health
- Crying, grief, and periodic discouragement are normal; it’s important not to bottle up feelings.
- Fatigue can magnify emotions, so scheduling rest or naps and using quiet time to regroup can help.
- Be gentle with yourself; healing, both physical and emotional, takes time.

2. Communicating with a Partner
- Share fears and frustrations openly and involve your spouse in clinic visits so professionals can explain and demonstrate stoma care.
- Many partners need time to adjust; fear of the unknown often underlies reluctance to look at a stoma.
- During intimacy, using a flesh-colored pouch or cover can make both partners more comfortable.

3. Weighing Rectum Removal vs. Reversal
- Removing the rectum eliminates a significant cancer risk and, once healed, often improves peace of mind.
- There are reports of difficult or incontinent reversals, with some patients ultimately requesting a permanent stoma again.
- It’s important to be certain before consenting, as once the rectum is gone, reversal is no longer possible.

4. Surgical Experience and Recovery
- Personal accounts vary, with some experiencing a 6-week healing period and others returning to work within days; pain and recovery time can vary widely.
- Removal is described as less painful and easier than the initial colectomy/ileostomy for several contributors.
- Expect feelings of strangeness or altered sensation in the pelvic area at first; this subsides with time.

5. Managing Mouth Ulcers and Possible Crohn’s Indicators
- Frequent mouth ulcers can accompany Crohn’s disease; it’s important to continue pursuing clear biopsy results.
- Rinsing with a 50/50 mix of liquid children’s Benadryl and Maalox for 30 seconds can numb pain and speed healing.

6. Practical Stoma Tips
- Consider opaque or flesh-tone pouches if a transparent one bothers either partner.
- Joining an ostomy support group, whether local or online, can provide shared experiences, tips, and encouragement.

7. Perspective and Encouragement
- Many have endured multiple surgeries and still find life rewarding.
- Focus on the positives: the stoma saved your life, future surgery reduces cancer risk, and you still have control over engaging in meaningful activities and relationships.