This topic is about living with Familial Adenomatous Polyposis (FAP), Interstitial Cystitis (IC), and desmoid tumors. The person sharing their story has an ileostomy due to FAP and also deals with IC, a rare bladder condition. They had surgery for a desmoid tumor, which led to moving their ileostomy to the other side of their abdomen. They are reaching out to see if others have similar experiences with these conditions.

Here are some shared experiences and advice from others:

1. Desmoid-tumor management with FAP:
- Desmoid tumors often appear near surgical scars. Doctors usually advise against more surgery as new scars can lead to more tumors.
- Regular imaging, like annual CT scans, helps monitor tumor size and progression.
- Radiotherapy is sometimes used if tumors cause symptoms or threaten organs. Some have found their tumors stable after treatment.
- There are medications that might slow tumor growth, but they can sometimes make it worse.
- Surgical removal is risky because tumors often come back and can spread more after surgery.

2. Emergency situations:
- One person had a desmoid tumor perforate their small bowel, leading to an emergency procedure. This highlights the serious nature of potential complications.

3. Alternative bowel diversions:
- Switching to a BCIR (Barnett Continent Intestinal Reservoir) has helped one person improve their IC symptoms by 60-70% compared to their previous ostomy.

4. Desmoid-tumor characteristics and monitoring:
- Tumors can range from small, superficial nodules to larger growths under the chest cavity.
- Many doctors prefer "watchful waiting" unless the tumor grows or threatens vital structures.

5. Resources:
- The FAP International Information Foundation is a recommended source for reliable information on FAP and desmoid tumors.

6. Interstitial Cystitis experiences:
- IC can occur alongside FAP or on its own.
- Diagnosis is mainly clinical, as there is no definitive test.
- Severe IC might lead to bladder removal and the creation of a urostomy.

7. General practicalities:
- Multiple abdominal surgeries can lead to extensive scar tissue, increasing the risk of hernias around stoma sites.
- It's important to have multidisciplinary care and regular follow-up imaging to balance the risks of interventions with quality of life.