potential Ileostomy Reversal after 17 years

[ElizabethJames]

Hello!
I am new to this group and have never been in any kind of online support chat before. I've had my ileostomy since I was 17 (I am 32 now) and was supposed to have the J-Pouch reversal surgery next month. I had to reschedule due to unrelated lymphocytic esophagitis (cause unknown).

I'm writing to ask if anyone else has lived with an ostomy for this long and how you cope. I felt really great about it the first few years, I graduated high school and college with honours and was on the dance team. The older I got the harder it became to deal with mentally. Physically I've never had any issues. The Cleveland Clinic evaluated my case ( as did multiple other doctors and hospitals) and said I am a great candidate for reversal.

I am excited to get it reversed and would love any insight or links to those who have had the J-pouch surgery, but also nervous because I have done so well with the bag that I am really conflicted about surgery. I have also been getting sporadic inflammation in my esophagus that the doctors say is not Chrohns or Colitis or Viral or Bacterial - they call it Lymphocytic Esophagitis and don't know the cause. I have had to postpone the reversal surgery twice now due to this esophagitis issue.

Honestly any advice or insight from someone who can relate to living with this longterm would be greatly appreciated. My entire life was put on hold since being hospitalised for weeks with the esophagitis and the potential year/to years being in recovery for the reversal surgery have been very depressing. I am normally a very positive person and I've just lost my spark recently and kind of lost my motivation to move forward so I am reaching out.

Thank you for reading!

[Shamrock4806]

I wouldn't take on too much, since your fine with the bag might as well leave that alone.

Supposedly reversing an illeostomy takes considerable time, and lots of adult diapers, before the colon kicks in again and starts working.

Something to think about if your having other issues also.