What Led You to Need an Ostomy? Share Your Story

I'm sorry you went through that. The J-pouch sounded good, but I did hear people had many problems with it, some serious and even fatal. Hope you are better now.

Wishing you the best. I had treatment for rectal cancer in 2022 and have been in remission since. Hoping the same for you.

Thank you, Hugo, and wishing you all the best.

❤️

My reason is a bit different from everyone here. I had COVID, and it caused a major blockage in my large intestines. They ended up having to take most of it out. It was 6 feet in length and weighed between 20 and 30 pounds. My mom can't remember what the doctor said the exact weight was, but I was puffed up like a balloon. They took it out, and thus my ileostomy was born.

Avoiding Ostomy Bag Leaking | Managing Ostomy Leaks with LeeAnne Hayden

Diagnosed with Crohn's in 1990 when I was 20 (I'm now 55). Had all but 1 inch of colon removed in 1992 and had an ileostomy for 9 years. Met my husband with it, had my son with it. And then all hell broke loose. Needed a revision and the surgeon (not a colorectal one!) was so proud of his work to create a perfect rosebud stoma... the problem was my poop was always going under the wafer. Some days I was changing the wafer 3 or more times! He offered to do a reversal because "I was too young to have an ileostomy." Ugh—now, 24 years later I go for a flex sig and the colorectal surgeon couldn't even get the scope through my connection spot. The original surgeon did not do a proper procedure, so it is failing. She said my only option is a permanent ileostomy. So, here I go again, but I am looking forward to a better quality of life and not living in fear of perforation every day!

Good luck, I hope things change for the good.

IGGIE

I had ulcerative colitis for 50 years that turned into colon cancer. I got a proctocolectomy last year and now have a permanent ileostomy.

It was hard to accept emotionally because I had no colitis symptoms, so the surgery did not improve my daily quality of life like it did for many of you. That said, I have adjusted pretty well and am living my full life.

I'm glad you are living your best life the best that you can. I love your username!

Thank you,

Got mine during emergency surgery in 2023 for an intestinal blockage caused by previous radiation for cancer prevention. I'd had surgery to remove my cancerous uterus, and since it had started to spread, they radiated my general lower abdomen daily for 30 days. Five years later, my intestines were so scarred by that radiation that they glued themselves shut and attached themselves to my bladder at the same time, creating the blockage. The colostomy saved my life, even though they waited almost five full days before operating. Believe me, I was begging for an NG tube since I could not stop throwing up! The good thing in all this was that while they were zipping me open for better access, they took out my appendix and found that it was covered with endometrial cancer. So, the next steps were to heal enough to start chemo, which I did, and I just had a PET CT scan that indicated I was clear of cancer still, yay!!!!!! Now I'm going to call my surgeon to schedule my reversal because my stoma is a mess.

Glad to hear you are cancer-free.

I had ulcerative colitis, which I think I developed a couple of years after a perforated sigmoid colon, where I ended up with peritonitis and sepsis. The colon healed initially after surgery to close the perforation, but I think the inflammation never truly settled down, so now I have a permanent ileostomy and have just had the Ken bum surgery.

I know that feeling! That J pouch is the worst invention!

The J-pouch twisted 🥨 at the entrance to the fake colon/J pouch. They said it had scar tissue. Plus, I had open abscesses, fistulas, pouchitis, and it was hard to push to empty. Bad old 😞 medical surgery invention!!! I'm sure with genetics/cloning they could regenerate human colons!?

Regenerating colons is a bit down the road at this point.

Though I don't think that is necessarily going to fix everyone. Diseases like Crohn's and UC may recur in a new colon. We need actual cures for diseases like those.

I had ovarian cancer. After chemo and a complete hysterectomy, the cancer recurred. I had more chemo, but a CT showed that a small amount of tumor had adhered to the outside of my colon. The chemo reduced it, but it regrew after a while and didn't go away completely with more chemo, so my oncologist decided it was time to operate again. He told me it was possible I might need an ostomy depending on what he found when he opened me up. They were able to get all the cancer out, but, as fate would have it, I woke up with an ileostomy, so here I am.

I had ulcerative colitis when I was 14 until 22, then got an ileostomy at 22 years old. It was a hard time.