Color Logo for MeetAnOstoMate
Sponsored by Hollister
Login   |  
Forgot password?
 
Forum
Videos
Reviews
About Us
Color Logo for MeetAnOstoMate
Where Everybody Understands You
41,453 members
Aug 13, 2012

Adjusting to an ileostomy - Challenges, fears, and seeking advice

This topic is about someone who has been living with an ileostomy for a little over a year after undergoing emergency surgery. The surgery was necessary due to complications from cancer treatment many years ago. The person is now considering whether to have a surgical reversal of the ileostomy, but is unsure due to the risks involved and the impact it might have on their family. They are also planning a wedding and are concerned about managing leaks, especially on the big day. Here are some pieces of advice and insights shared by others in similar situations:

1. Decision-making about reversal:
- Take your time and gather detailed information about the risks and benefits of a reversal. It can involve multiple surgeries and may result in the loss of more small bowel.
- Some people choose to keep their ileostomy when they find their quality of life has improved, with fewer leaks and longer wear times.
- It often takes 12–18 months for the body to adapt, and leaks usually decrease over time as you become more experienced.

2. Emotional coping:
- Focus on the positives in your life, like your supportive fiancé and upcoming wedding.
- Remember that an ostomy is just a different way for your body to function, not an illness.
- It's normal to have dark thoughts and feelings of PTSD; allow yourself time to heal emotionally.

3. Preventing leaks and gaining pouch security, especially for big events:
- Reinforce the wafer/flange with extra tape, like Hypafix or medical paper tape, for added security.
- Consider wearing a thin elastic ostomy belt to keep the appliance snug.
- Specialized underwear with support panels can help hold the pouch flat and reduce ballooning.
- Use convex skin barriers if your stoma is flush or if leaks are frequent; try free samples from different manufacturers to find the best fit.
- During changes, use a tool like "The Equalizer" to press a firm ring sealer evenly for a better seal.
- Plan your meals to manage output: some people finish eating by late afternoon or fast before important events, while others have an early main meal and a light snack later.
- Adjust your diet on event days to include lower fiber and thicker-output foods, and stay hydrated with water.

4. General product and technique tips:
- Always have a change kit, extra tape, and disposal supplies with you.
- Once you find the right combination of barrier, ring, and routine, wear time can often be extended to 3–10 days.
- Contact ostomy manufacturers for free samples to try new products like barriers, rings, belts, deodorants, and pouch filters.

5. Long-term outlook:
- Many people who have lived with an ileostomy for several years report leading full, active lives with rare accidents once they refine their systems.
- Acceptance usually grows over time, and many feel no different from those without an ostomy, opting for surgery only if it's medically necessary.
See full discusison
Gray Logo for MeetAnOstoMate
MeetAnOstoMate.org

MeetAnOstoMate is a remarkable community of 41,453 members.

“I found real people, real humor, and answers I couldn’t get anywhere else.”

“The support here impressed my husband’s medical team - they plan to recommend it.”

“This community saved me when I thought I was a freak. Now I’m thriving.”

“Thank god for this site - I finally knew what to ask my surgeon.”

Join Free

Popular Topics

David Letterman's Top 10
Complications
Just found support online and couldn't be happier and amazed!
New to Colostomy: Can I Eat Popcorn or Mango?
Anti-fungal Powders
Seeking Support for First Family Gathering Post-Surgery
What's this coming from my bum?
Idk if I did this right 🥴
Not normal but then who is 🤣
Flying with a Stoma: Tips and Concerns

New Topics

Hip Replacement surgery?
Purple Discoloration on Stoma at 3 O'clock Position
mjc
Frequent large poop coloured mucus and blood coming from rectum after 2 years having a Illiostomy, with painful rectal spasms and tummy cramps
Flabby.....taps out
🔮 These are the Horoscopes for the week of September 1, 2025 
DJ TJT..
JUST CALL ME HENRYM
WATCH WATCHING
Moving
About us | Privacy policy | Terms of use | Ostomy Blogs | Ostomy Q&A | Guides | Contact Us
This site is protected by reCAPTCHA and Google Privacy Policy and Google Terms of Service apply.
Copyright (c) MeetAnOstoMate.org All Rights Reserved
Create Account
Login
↑