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Aug 18, 2021

Seeking Advice - Will I regain physical abilities after ileostomy surgery?

This topic is about life after having an ileostomy, which is a surgical procedure that creates an opening in the abdomen to allow waste to exit the body. This is often necessary for people with severe Crohn’s disease affecting the colon. The focus here is on regaining physical abilities, managing diet, and understanding the long-term challenges that come with an ileostomy. A young man is considering this surgery and is curious about how it will affect his ability to engage in physical activities, his diet, and the day-to-day challenges he might face.

Here are some helpful insights and advice:

1. Physical capability and lifestyle:
- Many people with long-term ileostomies have returned to activities like gardening, swimming, working out, jogging, dancing, camping, and playing with their kids.
- After surgery, there is a healing period of a few months. Avoid heavy lifting until your body is fully healed. Using a support or hernia-prevention belt is recommended for heavy work or weight training in the future.

2. Early learning curve:
- One of the initial challenges is finding the right type of ostomy appliance and learning how to use it. Ostomy supply companies offer free samples to help you find what works best for you.
- Joining an ostomy support group or watching YouTube channels about ostomy care can provide valuable tips and support.

3. Diet, chewing, and hydration:
- Start with a low-residue diet as advised by hospital dietitians, and gradually introduce new foods one at a time. Chew your food well and stay hydrated.
- Many people with ileostomies can eventually eat most foods, including occasional wine or beer, but it's important to introduce new foods slowly and monitor your body's reaction.

4. Skin and appliance care:
- Keep the skin around your stoma healthy by changing your appliance as soon as you notice a leak or itch.
- Use adhesive-remover spray or wipes to protect your skin and make removal less painful.

5. Hernia prevention:
- There is a higher risk of developing parastomal hernias. Once healed, start core-strengthening exercises, wear a support belt for strenuous activities, and avoid sudden heavy lifting in the early months.

6. Mental and emotional adjustment:
- It's common to struggle with the psychological aspect of having an ostomy at first, but this usually improves as you develop a routine.
- Try to view the ostomy as a life-saving friend. Humor and support from peers can help with acceptance.

7. Surgical scope and long-term planning:
- The outcome of the surgery depends on what is removed. If only the colon is removed, the quality of life is generally good. Removing parts of the small intestine can lead to nutrient absorption issues.
- Have a detailed discussion with your gastroenterologist and surgeon about what will be removed, potential future surgeries, and any changes in nutrient absorption.

8. Miscellaneous tips:
- Have adhesive remover spray, barrier wipes, and stoma powders ready at home before leaving the hospital.
- The frequency of changing your appliance varies; find what works best for you.
- Some people find it helpful to name their stoma and use humor to adapt, like calling it "Stella.
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