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Jul 06, 2009

Lifetime Member Seeking Ostomy Support and Chat

This topic is about someone seeking support and shared experiences from fellow ostomates. They are looking to connect with others who understand the daily life of living with an ostomy. Here's a bit more about their situation and some advice and insights shared by others:

- The person is 40 years old and lives in Cleveland, Ohio. They were diagnosed with ulcerative colitis in 1993 and had an ostomy bag for 11 months while a J-pouch was created. Now, due to Crohn’s disease, they have returned to a permanent ileostomy.

- They are currently recovering from recent surgery at the Cleveland Clinic. They have both an ostomy and a suprapubic urinary catheter, meaning there is no bowel or bladder output through the natural routes.

- They are scheduled for surgery on September 18 to remove the J-pouch created in 1993, take out the suprapubic tube, close the abdomen, and leave only the ostomy to manage.

- They are eager to connect with others to discuss products, routines, coping strategies, and other aspects of daily life with an ostomy.

Additional background includes:

- Before their initial surgery, they experienced severe blood loss and their weight dropped to 114 lbs. They faced the challenge of re-learning bowel function after the J-pouch and are now adjusting to a lifelong ostomy due to Crohn’s.

Advice and insights from others include:

1. Many people experience a lack of professional stoma education. One person shared that they received almost no instruction after an emergency colectomy, and not having insurance made things even harder. Peer support forums can be invaluable for filling these knowledge gaps.

2. Emotional support is crucial. Remember, you are not alone—there are people worldwide who understand and are thinking of you. Keeping a positive outlook, like "keep smiling, chin-up," can be very helpful during recovery and adaptation.
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