This topic is about someone who has been living with a colostomy for three years due to Crohn’s disease and is struggling to accept it, especially with the continuous liquid output. Despite trying various methods to manage the situation, they are still facing challenges and are seeking advice on what else they can do. Here are some insights and suggestions shared by others who have been in similar situations:
1. Mind-set and Acceptance
- Many people initially feel despair but find acceptance by viewing the stoma as life-saving and enabling them to engage in normal activities like work, travel, and socializing. Some find it helpful to give their stoma a nickname to make it more personal and tolerable.
- Appreciating a supportive spouse can help ease feelings of resentment, as chronic illness can strain relationships.
2. Diet to Thicken or Slow Output
- Foods like potatoes, bananas, marshmallows, plain chicken, cold roast beef, and jacket potatoes are often recommended to help thicken output.
- Identifying and reducing FODMAP intolerances, such as wheat products, certain fruits, soft cheeses, and most dairy, can significantly reduce gas and liquid output. Keeping a food and output diary can help identify personal triggers.
3. Medication and Professional Help
- Consult with a gastroenterologist about additional medications that can help manage output, such as anti-motility or bulking agents.
- Consider getting a referral to a gut-function specialist for tests that can provide more insight into gastric emptying and transit times.
4. Caution on Reversal with Crohn’s/IBD
- Reconnecting the bowel can lead to a recurrence of symptoms like bleeding and pain. It’s important to thoroughly discuss the risks with an experienced IBD colorectal surgeon to determine the best course of action.
5. Appliance Management
- Using modern high-output pouches or two-piece systems designed for liquid stool can help manage leaks. Consider using convex wafers or extended-wear barriers to improve the seal.
6. Emotional and Peer Support
- Feeling alone is common, but participating in forums, local ostomy chapters, or online chats can help reduce isolation. Remember, adjusting to life with a stoma is a personal journey and may take time.
7. Alternative/Complementary Approaches
- Some people explore naturopathic support, such as IV vitamin C, mistletoe, and artesunate, as part of their coping strategy, though these are not evidence-based for everyone.
8. Activity and Lifting
- Gradually resume activities but avoid heavy lifting to prevent complications like a parastomal hernia. Listen to your body and progress at your own pace.
See full discusison