This topic is about someone who has been living with Crohn’s disease for 44 years and is considering an ostomy due to the ineffectiveness of current treatments and the presence of other health issues like COPD, diabetes, heart problems, and skin cancer. They are seeking advice on what life with an ostomy might be like, both in terms of the surgery itself and the day-to-day experience afterward.

Here are some insights and advice shared by others:

1. The possibility of Crohn’s disease recurring after an ostomy is a concern, especially regarding the removal of the rectum. A gastroenterologist has suggested a colostomy and started medications that provide temporary relief, including a stool-forming drug and potentially Vedolizumab (Entyvio), pending financial assistance.

2. The person has been mostly confined to their apartment due to uncontrolled leakage, though current medications have helped reduce this issue. They are curious about how others felt when they first woke up with an ostomy bag attached.

3. Exploring complementary options like consulting a nationally board-certified Chinese acupuncturist/MD who prescribes Chinese herbs might help some patients avoid surgery, though its effectiveness for Crohn’s is unclear.

4. Many people report immediate symptom relief after ostomy surgery, with a significant improvement in quality of life. While adapting to a "new normal" is necessary, activities such as running, swimming, and maintaining intimate relationships are still possible. Preserving as much of the intestine as possible is crucial for long-term health.

5. Emotionally, it’s common to feel shocked or uncomfortable with the ostomy bag at first, but most people adjust over time and find it preferable to living with debilitating disease.

6. Practical learning tools are available, such as YouTube channels where ostomates share their experiences, demonstrate stoma care, and discuss daily routines.

7. Finding the right ostomy appliances is key to success. When the right products are used, an ostomy can significantly reduce the urgency of bathroom trips. However, issues like herniation around the stoma can occur over time, so regular check-ups with a colorectal surgeon are recommended. For some, reversal might be an option.

8. An ostomy is not the end of life. With support, proper care, and the right supplies, most people can return to normal or near-normal activities.