This topic is about living with the challenges of Crohn’s disease, particularly after undergoing multiple life-saving surgeries that resulted in an ileostomy, bladder damage, and social anxiety. Here’s a look at the journey and some helpful advice:

- The journey began with a diagnosis of Crohn’s disease in 1994, which eventually led to severe complications like colon-to-bladder fistulas and abdominal abscesses.
- In the summer of 2000, a total colectomy and proctectomy were performed, but the initial ileostomy was not successful, leading to recurring abscesses and significant bladder damage.
- By the summer of 2001, another surgery was necessary to remove a diseased segment of the small bowel and create a new ileostomy. This resulted in a seven-month hospital stay, reliance on total parenteral nutrition (TPN), and withdrawal from a morphine pump.
- During this time, the loss of a job and insurance was a significant challenge, but state insurance and Social Security provided a safety net.
- By late 2001 to early 2002, after a final surgery, there was a positive turn as eating resumed, and discharge from the hospital was possible. A New Year’s resolution to stay positive was made, and by June 2002, re-employment and debt repayment were achieved.
- Despite the lack of family support, a strong circle of friends provided essential emotional support.
- The ileostomy now functions well, and Crohn’s has been inactive for years. However, bladder incontinence remains an issue due to previous fistula damage, with plans for a definitive surgical repair.
- Social anxiety, particularly around dating with an ileostomy, has led to withdrawal from dating and fears of loneliness.

Advice and insights for navigating these challenges include:

1. Engage with the ostomy community for friendship, shared experiences, and potential relationships. Many people in the community understand similar challenges.
2. Maintain a positive outlook, as adopted in 2002. Gratitude, perspective, and courage can attract supportive people and new opportunities.
3. Be open about the ileostomy when meeting others. Honesty and confidence often earn respect and help ease anxiety.
4. Keep fellow community members updated on surgical progress, as they can offer mutual support, especially those with similar fistula or Crohn’s issues.
5. Remember that coping with Crohn’s or a permanent ostomy is a lifelong journey. Staying mentally resilient and seeking peer support are crucial for long-term well-being.