Community Forum

Have a question, or want to share your own tips and experiences? Join the discussion in the community forum. You must be registered to participate. Our forums are moderated by Crohn's & Colitis Foundation staff to facilitate a safe environment.

Facing ieleostomy


Fri, July 10, 2015 9:19 AM

I have 4 doctors telling me I need this. But, I am resisting. I had a total colon removal in 1997 and received a J-pouch.  This was due to a IC diagnosis. Later the diagnosis was changed to Crohn's. During this process, I had a temporary ileostomy. It was a terrible experience. The skin around it was raw, red, painful, and bleeding all the time. The only saving grace was that i knew knew it would only be 4-6 weeks. But, I have been fighting fistulas for about 2 years now. In have multiple fistulas with setons in them. I end up getting infections and having go go to the hospital for IV ant.i-biotics. I know this is bad. But based on my experience, I can't imagine living like that for the rest of my life

FPO hap0912
Joined Jul 10, 2015

Wed, July 29, 2015 10:48 PM

 Reply posted for hap0912.


Hello, ive had my ileostomy since febuary 3rd 2015 its not so bad, you start t get the hang of it over time!
As for the red, panful burning skin theres this stuff called "MARATHON" its a liquid you put on your skin which dries it out so that your skin can heal. Almost like a skin barrier but this stuff works instantly! You can ask a STOMA CARE NURSE more about any concerns your having.


Best wishes & good health!  

FPO christinamarie
Joined Jun 2, 2015

Related Topics

Small bowel resection
Author Image jess123
Joined Jan 9, 2022

Hi, I'm preparing to have an ileocecal resecti....

read more

Issues after complete sur...
Author Image Rolo
Joined Feb 25, 2024

Hello, I have had all 3 surgeries to complete m....

read more

Ostomy Support
Author Image JohnWalsh
Joined Dec 11, 2023

Are there wound care experts or professionals that....

read more