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Jun 07, 2022

Considering Surgery for UC/Crohn's - Need Advice!

This topic is about a 32-year-old man who has been dealing with ulcerative colitis and Crohn’s disease for 22 years. He previously had a subtotal colectomy, which means his large colon was removed, and his small bowel was connected to his rectum. He is now considering elective ostomy surgery due to ongoing health issues, including a painful fistula, multiple abscesses, and the side effects of heavy medication use. His wife supports the idea of surgery, but he has concerns about body image and whether his condition justifies an ostomy. He is seeking advice before making a decision.

Here are some pieces of advice and insights shared by others:

1. Decision-making process
- It's important to make this decision with your colorectal surgeon and gastroenterologist. Consider listing all the pros and cons and discussing them with your partner.
- Be aware of the mental and body-image challenges. Many people find the psychological adjustment more difficult than the physical one, but they often feel relieved once the pain and medication burden are gone.

2. Quality of life after surgery
- Many people report significant improvements in their quality of life, including less pain, fewer medications, and the ability to eat normally, travel, work, swim, and enjoy everyday activities.
- Some prefer to keep their stoma permanently rather than risk a reversal and the return of symptoms.

3. Practical stoma considerations
- Ensure you have an experienced colorectal surgeon, as proper stoma placement is crucial. It should protrude at least 1 inch and be positioned away from skin folds or the waistband to prevent leaks.
- Ask if the procedure can be constructed as reversible, such as an end-ileostomy with a rectal stump, if you want to keep that option open.

4. Products and concealment
- Support or ostomy belts, like the Stealth Belt, can help flatten or hide the pouch. Some people feel comfortable going shirtless at the lake while wearing one.
- The bag profile is usually less noticeable than expected, and loose or baggy shirts can often conceal it completely.

5. Drug and fistula management tips pre-surgery
- Long-term use of Flagyl and Cipro can have side effects. If you feel like you're losing control, seek help early.
- Ask your surgeon about inserting a seton to keep the fistula draining and reduce pain and infection while you make your decision.

6. Inspiration and resources
- Athletes like Jake Diekman, an MLB pitcher, and the "Let’s Talk IBD" YouTube channel show that it's possible to lead active, public lives with an ostomy.
- Many people initially feared the bag but later found it "not nearly as bad" as they imagined.

7. Final encouragement
- Several people chose a stoma over ongoing pain or life-threatening complications and have "never regretted a day." With supportive partners and good surgical care, most believe the best days are ahead.
See full discusison
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