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Jun 07, 2015

My life with an ileostomy

This topic is about someone who has been living with an ileostomy since October 2011 and is facing challenges with severe gas, which causes the pouch to balloon or even burst. Despite trying various anti-gas products, the issue persists, leading to a very restricted diet that excludes most vegetables. This has resulted in poor nutrition, health decline, and regret over the surgery. Here are some suggestions and insights that might help:

1. Consider using pouches with built-in charcoal filters. These can help reduce ballooning, although the filters might clog and require daily changes. You can request free samples from your supplier.

2. Add a manual vent to your pouch:
- The Osto-EZ-Vent is a stick-on vent that you can install at the top of any pouch. You puncture the film beneath it with a toothpick and flip the cap to release gas as needed. It's available through suppliers like Edgepark, and Medicare or other insurers may cover it with a prescription.

3. Try the Coloplast SenSura Mio system, which is designed to reduce gas build-up. It features a Flex 2-piece system with an Easiclose wide outlet and Velcro tabs to fold the pouch upward.

4. Some people manage gas by using Hollister pouches without filters and changing the pouch every 1–2 days.

5. Adjust your cooking methods and food choices:
- Avoid raw vegetables; instead, eat them well-cooked or puréed. V8 or tomato juice can provide vegetable nutrients with less fiber.
- Eating marshmallows before meals and including daily mashed or baked potatoes may thicken output and reduce gas.
- Many people tolerate red meat, fish, homemade pickles, zucchini, small portions of cauliflower, whole milk, and candy for extra calories.
- Avoid large amounts of cauliflower, high-fiber or enriched grains, and any foods that consistently cause problems.

6. Consider ruling out food intolerances. For example, one person found relief from severe gas after adopting a strict gluten-free diet following a positive celiac disease test. Remember, blood tests for celiac disease must be done while still consuming gluten.

7. Over-the-counter aids like Beano (alpha-galactosidase), Gas-X, or other simethicone/enzyme products might be helpful.

8. Discuss digestive-support options with a healthcare professional:
- Enzymes such as HCL with pepsin and amylase.
- High-quality probiotics containing Saccharomyces boulardii and Lactobacillus rhamnosus.
- Short courses of natural antimicrobials like oregano oil or garlic if dysbiosis is suspected.
- 5 grams per day of glutamine powder for potential "leaky gut" repair.

9. Many people find that excessive gas gradually decreases during the first one to two years after surgery. Regular follow-ups with an experienced gastroenterologist and a WOCN nurse can help speed up problem-solving and improve appliance adherence.
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