Topic Explanation:
The original poster (OP) is sharing their experience with a temporary loop ileostomy, which was created due to severe Crohn's inflammation throughout their colon. Since the surgery, they have been experiencing daily lower abdominal pain and passing bloody mucus through their rectum multiple times a day, with the frequency and pain increasing. They mention that their recent colonoscopy revealed both diversion colitis and disease-related inflammation. Despite increasing their medication regimen, including monthly infusions and an oral biologic, they are still struggling with symptoms. The OP is seeking advice from others who have had temporary ileostomies, asking if they experienced similar complications and whether these issues improved or worsened over time.
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Advice and Insights:
1. Medication and Treatment Adjustments:
- Canasa suppositories were suggested to help with discomfort and inflammation, though the OP mentioned they were unable to use them due to pain.
- Prednisone was mentioned as a powerful anti-inflammatory that has helped some users manage their symptoms, though long-term use can have significant side effects.
- Calmoseptine ointment was recommended for managing soreness and irritation around the rectal area, with one user stating it "saved their life at times."
2. Surgical Considerations:
- Some users shared their experiences with colectomy (removal of the colon) and proctolectomy (removal of the rectum), noting that these surgeries ultimately resolved their symptoms after medications failed to provide relief.
- One user mentioned that after years of trying medications, they eventually had a permanent ileostomy and found it improved their quality of life.
- Another user shared that their loop ileostomy and colectomy were performed simultaneously, and they no longer experienced bleeding after the surgery.
3. Emotional and Psychological Impact:
- Several users acknowledged the emotional toll of dealing with chronic pain and ongoing symptoms, encouraging the OP to stay in close communication with their medical team and remain hopeful that a solution will be found.
- One user emphasized the importance of understanding and respecting the diagnosis, as ignoring it can lead to worsening symptoms and complications over time.
4. Medical Team and Communication:
- Users stressed the importance of working closely with a medical team to explore all options, including surgical interventions if medications are not effective.
- One user asked if the OP's
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