UOAA Discussion Board

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!

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.

I can't offer any insights about J-pouch surgery or reversal but I can definitely weigh in on being a longtime ostomate. I've had my ileostomy for 32 years. I had my ostomy surgery in 1993 and have required a few resections since then but at this point I've had a stoma for longer than I was without one. I was so sick when I had my original surgery that I was happy for anything that could improve my life. I can absolutely relate to the feeling of having my life put on hold because of illness. That's so very difficult and I feel for you.

It's not perfect and sometimes it's frustrating but my ostomy has allowed me to do the things in life that I couldn't do before surgery, when my Crohn's was so active -- finish college, travel, work, marriage, kids, etc. I'm now closing in on my retirement years (whoa) and I'm still thankful that ostomy surgery was an option all those years ago. (I was not a candidate for reversal so I knew going into it that this would be permanent.)

Good luck to you!

Welcome, ElizabethJames!

We don't know why you had the ileostomy, so I'm wondering if it was from the same cause as your lymphocytic esophagitis. I'd hate to reverse the surgery and end up needing it again.

You're young and have so much to look forward to! Naturally, many things to consider that contribute to anxiety and depression. You seem to have had a positive outlook before the doctors offered the reversal. Now your stress is potentially working against you, which could be your intuition. Seeking counsel is wise not only for making the surgery choice but also for your mental well-being.

Know that we all have or are currently going through similar anxiety. This is normal! Strive to look forward to what life's differences will bring, rather than how to deal with the stress.

Don't be a stranger. Come back and let us know what you decided and how things are going.

Hi, I can't speak to living with a j-pouch, but I can to long term ostomy. I've had my ileostomy for 51 years, since I was 15. Currently, I hold a fairly physically demanding job (pediatric occupational therapist) and while I'm looking toward retiring, it's not due to the ostomy, it's due to the crunchy joints that come with age. I had my ostomy for UC (after 10 years of illness) so I was very debilitated before surgery. I do have continuing 'gifts' from the medications I was given for UC, especially from high dose cortisone/prednisone, that do affect me. These include osteoporosis, pre-diabetes,cataracts, joint issues, among others. But now, at my age, these things are not unusual for my age group, they can be managed, and I fit right in! Seriously, though, the ostomy is what let me do what I want in my life, so far. I think the teen years and 20s were the most difficult,especially regarding relationship building, as well as figuring out care routines. At this point, for me, unless there is a problem (and, of course, there are sometimes), the ileostomy has pretty much become a non-issue in my day to day life. I don't spend a lot of time thinking about it and weekly care takes about 10-15 minutes, tops. Life with an ostomy is not perfect or without frustrations, but neither is life without one. I'm happy with mine, most of the time.

jstl wrote: 2025-07-18 13:10:32 Hi, I can't speak to living with a j-pouch, but I can to long term ostomy. I've had my ileostomy for 51 years, since I was 15. Currently, I hold a fairly physically demanding job (pediatric occupational therapist) and while I'm looking toward retiring, it's not due to the ostomy, it's due to the crunchy joints that come with age. I had my ostomy for UC (after 10 years of illness) so I was very debilitated before surgery. I do have continuing 'gifts' from the medications I was given for UC, especially from high dose cortisone/prednisone, that do affect me. These include osteoporosis, pre-diabetes,cataracts, joint issues, among others. But now, at my age, these things are not unusual for my age group, they can be managed, and I fit right in! Seriously, though, the ostomy is what let me do what I want in my life, so far. I think the teen years and 20s were the most difficult,especially regarding relationship building, as well as figuring out care routines. At this point, for me, unless there is a problem (and, of course, there are sometimes), the ileostomy has pretty much become a non-issue in my day to day life. I don't spend a lot of time thinking about it and weekly care takes about 10-15 minutes, tops. Life with an ostomy is not perfect or without frustrations, but neither is life without one. I'm happy with mine, most of the time.

Good to hear, maybe I can tap your experience a little if you could help.

Is your illeostomy in a belly fold? Because mine is and my wafer, although I can make it more flexible, really isn't flexible enough like a barrier strip is.

Sometimes I'll get a wafer made of the same material as the the barrier strips and it's very flexible so it fits right tight inside the belly fold and flexes when lying flat. But most of the time it's made of a stiffer material which doesn't fit as close around the stoma and wants to pop off.

I'm getting by by floating a thick bead of paste and it handles a lot of flex, but I'm thinking if I could get the wafer thinner and more flexible, then I could use a lot less paste.

But on the other hand output carries a lot of weight and without the wafer being somewhat stiff and holding everything up then it would simply pull the wafer off and cause leaks.

What are your thoughts?

Thanks

I have a reversible colostomy. I’ve had it for 13 years. My attitude toward surgery is that it is a last resort. I am doing fine as is. Actually, as a person with UC that sometimes results in urgency I see advantages to having a colostomy. For me, I will never consider surgery unless it becomes necessary. Surgery of any kind always carries risks. Abdominal surgery is major surgery and carries more than average risks. My attitude toward it is, if it ain’t broke don’t fix it.