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Nov 07, 2018

Seeking advice on ostomy reversal - need support!

This topic is about someone who has been living with an ileostomy for three years due to Crohn’s disease and is considering a reversal surgery. They are facing a tough decision because of the potential risks involved and the concerns of their family. Here are some insights and advice that might help:

1. Decision-making about reversal:
- Approach the decision logically, considering the likelihood of Crohn’s disease returning and the possibility of needing another ostomy in the future.
- Have detailed discussions with both the surgeon considering the reversal and your gastroenterologist about your medical history, the remaining bowel length, and the potential for continence.

2. Professional support:
- Consult with a certified wound-ostomy-continence nurse (WOCN) for expert advice on managing your pouch. They can help with stoma assessment, fitting, and techniques to control leaks and gas.

3. Controlling leaks:
- Reinforce the wafer by taping around its edge to reduce leaks and improve sleep.
- Consider sleeping semi-upright in a recliner or using an adjustable bed to lessen pressure on the pouch and prevent blow-outs.

4. Managing gas and night-time ballooning:
- Use anti-gas medications like Beano or Gas-X before bed.
- Stick to regular mealtimes to reduce stoma noise and gas.
- Avoid carbonated drinks to minimize gas output.
- Consider using an Osto EZ-vent or a pouch with a built-in filter/vent to release air during the night.

5. Product and therapy suggestions:
- Osto EZ-vent for manual gas release.
- Anti-gas tablets such as Beano or Gas-X.
- Low-dose Xanax for anxiety and insomnia related to the ostomy, as recommended by a physician.
- Legal medicinal marijuana for anxiety or pain, if available in your state.
- Acupuncture as an alternative therapy to help calm the gut.

6. Expectations if reversal proceeds:
- With only 8 inches of large intestine remaining, expect liquid stool consistency.
- Continence will depend on sphincter function; managing frequent loose stools may be possible, but accidents could occur.
- High-fiber foods can thicken output, while sugary foods, salads, and low-fiber items may increase liquidity.

7. Emotional considerations:
- Understand your family’s concerns about surgical risks and involve them in consultations to hear the risks and benefits directly.
- Recognize that those without ostomies might not fully understand the daily challenges. Joining ostomy support groups can offer understanding and practical advice.
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