This topic is about living with Familial Adenomatous Polyposis (FAP), dealing with complications from a desmoid tumor, and managing life with a permanent ileostomy. Here is a personal journey and some advice shared by others who understand these challenges:

- In 2008, a diagnosis of Familial Adenomatous Polyposis (FAP) was made.
- A total colectomy was performed, creating a J-pouch and a temporary ileostomy, which was initially reversed successfully.
- By late 2009, there was noticeable abdominal swelling and hardness, initially thought to be scar tissue.
- In April 2010, a pelvic mass was discovered during an OB-GYN exam, and surgery was scheduled for June 16, assuming it was a uterine fibroid.
- The mass turned out to be a large desmoid tumor, about the size of a Nerf football, attached to the small intestine. It was removed by the OB-GYN without prior consultation.
- Severe postoperative complications arose within 48 hours, including low blood pressure and rapid heart rate, leading to a transfer to the original surgical hospital and a medically induced coma.
- After waking three weeks later, there was significant deconditioning, loss of voice, and the presence of a permanent ileostomy. Intensive physical and occupational therapy was needed, along with relearning to walk.
- With only 5–8 feet of small intestine remaining, nutrition, vitamins, and electrolytes are provided through Total Parenteral Nutrition (TPN) due to very high ostomy output.
- The entire summer was spent in the hospital, followed by four months at home, experiencing a mix of good and bad days while caring for a young child and focusing on recovery.

Advice and insights from the community include:

1. Emotional support is crucial. Community members encourage staying positive, praying, and persevering, with the hope that good days will eventually outnumber the bad ones.