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May 18, 2015

Struggling with severe ileostomy pain and discomfort

This topic is about coping with severe pain, rapid transit, and hydration issues after an emergency ileostomy. The person sharing their experience had a colostomy that was well-tolerated from 2010 to 2013. However, after an emergency subtotal colectomy in February 2015, they were left with a new ileostomy, which they find difficult to manage. Here are some helpful insights and advice for dealing with these challenges:

- **Slow Transit & Thicken Output**
1. Over-the-counter Imodium (loperamide) or prescription Lomotil can help reduce the frequency and liquidity of output.
2. Foods like marshmallows, applesauce, plain mashed banana, white rice, pasta, potatoes, Stouffer’s Mac & Cheese, and saltine or graham crackers can help firm up the output.
3. It's best to avoid or limit high-fiber or "stringy" foods such as raw cabbage, corn, bean sprouts, and the skins of peas, grapes, and tomatoes. Introduce new foods slowly, as tolerance can vary and change over time.

- **Hydration & Electrolytes**
1. Constant fluid replacement is crucial since the colon is no longer present. Many find drinks like Gatorade, V8 juice, homemade lemonade, herbal teas, coffee with milk or cream, grape juice, coconut water, or medical-grade protein drink powders easier to tolerate.
2. Ensure fruit drinks and Boost are suggested, though some may not like their taste. Avoid red or cherry flavors to prevent alarming red output.

- **Eating Strategy**
1. Start with very small, frequent meals and chew thoroughly. Sip liquids during meals.
2. The small bowel may gradually adapt to behave more like a colon, and transit usually slows within the first year.

- **Pain & Cramping**
1. Severe cramps after meals are not typical once healing is complete. It's important to see a surgeon to rule out issues like obstruction, strictures, adhesions, or high-output syndrome.
2. Some may be prescribed antispasmodics or opioids initially, but these should decrease as healing progresses.

- **Appliance / Skin Care**
1. The volume and liquidity of output can affect wafer adhesion. Using marshmallows or applesauce to thicken output before changes, carrying travel-size Lysol spray, and experimenting with pouch covers or decorative stick-ons can improve confidence and odor control.

- **Mental Adjustment**
1. Feelings of grief, anger, and dislike for the bag are normal. Naming the stoma and celebrating small milestones can be helpful.
2. Remembering that the ileostomy is life-saving, seeking peer support, having faith, and visualizing a return of energy in the long term can aid in acceptance.

- **Reversal Considerations**
1. Those without any remaining colon caution that reversal can lead to a worse quality of life, with issues like anal fissures, diarrhea, and bloating. It's important to have a thorough discussion with surgeons before deciding.

- **Miscellaneous Tips & Supplies**
1. Keep grape juice or coconut milk on hand to help flush potential blockages.
2. Medical protein powders can provide nutrition when solid food intake is low.
3. Using a Vitamix-type blender can make raw vegetables more tolerable by removing indigestible fiber.
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