End Ileostomy … Looking for support.

End Ileostomy

How long has everyone here had their stomas? I feel like I’ve seen so many posts with a lot of newbies…which is fine but I’m going on 6+ years and there doesn’t look to be a reversal in sight.

Pre-op diagnosis was Colonic Inertia, . Greater than 70% of Sitz Marker beads left in right transverse colon after 7 days. This was after trialing Amatiza, Linzess, Miralax, laxatives, etc

Defography showed anismus, type 1 pelvic floor dysfunction, dyssynergia, celiac disease, diverticulosis & umbilical hernia repaired at the time of creation of my ileo.
ARM was abnormal; balloon couldn’t be expelled.
I think I was around 20 when I go my ileo.

I also have a parastomal hernia, so I’m trying really hard in pelvic floor pt. I’ve cancelled 2 appointments already because it flares my PTSD badly.

I don’t know if there’s ever hope I’ll get this thing reversed…I just want my body & my life back 🥹😩

Posted Jun 13, 2026, 11:44 PM UTC

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