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Jan 07, 2024

Ileostomy Reversal Recovery - Seeking Experiences and Advice

Living with an ileostomy reversal can be a journey filled with ups and downs. Five months after the surgery, it's common to experience a mix of "good days," where you feel active and energetic, and "bad days," where frequent and urgent bathroom visits can be overwhelming. This variation is normal, but it can leave you wondering about the future. Here are some insights and advice that might help:

1. It's normal to question if the days spent close to the bathroom will be permanent or if you'll be able to travel comfortably again. Many people wonder how long it will take to reach a "new normal," whether it will be months or even years.

2. If your rectum was removed but the sphincter preserved, your surgeon might suggest "holding it" to help your colon stretch and increase storage capacity. However, late-afternoon or evening urgency can still be a challenge.

3. Consider looking for resources on colon retraining, gut-health restoration, and specialists who can guide you through the aftercare of a reversal. If local follow-up is limited, reaching out to institutions in Australia or the UK might be beneficial.

4. Keeping a detailed food diary can be incredibly helpful. By recording your meals and subsequent bowel activity, you can identify personal triggers and foods that work well for you.

5. Remember that healing takes time. Even at six months, your bowel is still adapting, and improvements can continue for many months or even years.

6. Adjusting your diet can make a difference:
- Try to avoid or limit common irritants like wheat, white potatoes, processed sugar, onions, and oily soft fish such as salmon.
- Opt for low-glycemic or easier-to-digest options like whole grains, sourdough bread, sweet potatoes, honey, real maple syrup, and long-cooked onions.

7. Medication can also aid in managing symptoms:
- Cholestyramine Light, a bile-acid sequestrant, can help reduce urgency and looseness, especially if you don't have a gallbladder.
- Daily fiber supplements can help bulk up stool, and you can balance this with osmotic laxatives like Miralax or antidiarrheals like Imodium as needed.

8. Expect functional changes as your colon gradually stretches to create more storage. Actively "holding" when possible may assist this process.

9. Some people find that by two months, they reach a routine of 2–3 morning bowel movements plus 1–2 later in the day with manageable urgency, thanks to a balance of fiber and laxatives.

10. For support, consider joining the Facebook group "Reversal Roundabout," where you can find peer experiences, quick answers, and extensive archived discussions.

11. Overall, progress is highly individualized and often involves trial and error. Combining dietary experimentation, medication adjustments, and community support while maintaining regular communication with your surgical team can be beneficial.
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