What Led You to Need an Ostomy? Share Your Story

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Bubblegum
Jul 14, 2025 5:33 am

What caused you to need an ostomy (if you're willing to share)?  

For me, I had rectal surgery that had problems when I had to go.  So it was suggested to get a colectomy to let my bottom heal.  When we tried to reverse it, it failed.  Got my second colostomy.  Waited and then tried reversal.  Failed again.  And then again.  Finally, now an ileostomy.  Each surgery had taken part of my colon and intestines.  Now I have no colon and a super short GI with high output that doesn't absorb nutrients well.  

What's your story?

IGGIE
Jul 14, 2025 5:43 am

I had ulcerative colitis for many years, and now life is so much easier with my ileostomy. I had a J-pouch first for 18 years, and it was a big disaster.

IGGIE

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HenryM

If I was a relative newbie with an ostomy, I have no doubt that this site would be very helpful to me.  The members are quick to respond to questions and issues and they are filled with experience.  When I joined, I already had a lifetime with an ostomy, so I just regard it as a place to meet and communicate with other folks similarly situated.  Either way, it is a good site.

Bubblegum
Jul 14, 2025 6:45 am

Actually, I don't know what a J-pouch is.

AlexT
Jul 14, 2025 7:25 am

Rectal cancer.

Ben38
Jul 14, 2025 7:36 am

FAP, an hereditary condition, is easiest to explain as turning into bowel cancer. That's just the basics; it's much more complicated than that. I had my ileostomy when I was 19. From what they found, I would have been dead by the age of 25.

 

My Ostomy Journey: Jearlean | Hollister

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IGGIE
Jul 14, 2025 11:38 am

A J-Pouch is formed after you have all your colon removed; they create a pouch in the shape of a letter J at the end of your small bowel and then they stitch that to your butt hole. But mine was a disaster, and after 18 years, I got rid of it. I should never have got it in the first place; I should have got the ileostomy first.

IGGIE

Hugo
Jul 14, 2025 4:12 pm

Perforated colon.

Beachboy
Jul 14, 2025 7:22 pm

Inguinal hernia repair mesh migrated over 20 years. Wrapped around and adhered to my sigmoid colon, puncturing it in two places.

TerryLT
Jul 14, 2025 7:35 pm

Perforated colon for me, but it was due to decades of what they called 'constipation' and was really colonic inertia, undiagnosed. Wasn't until after my colostomy failed that they realized my colon was not working properly (I tried telling them that for years!), so I was finally given an ileostomy. Success!

Terry

SusanT
Jul 14, 2025 11:45 pm

Rectal cancer gifted me both a colostomy and a urostomy. The surgery gifted me a "temporary" (only 10 months now) drain, and very recently, a kidney stone gifted a temporary nephrostomy. I'm a bit of an overachiever, lol.

cynthia L
Jul 19, 2025 5:47 pm

Ulcerative colitis. Diagnosed when I was 20, I had remissions and relapses a few times, prednisone (ugh), and finally surgery when I was 40. They tried to do a j-pouch, but it would never work, and after a few months in the hospital, they gave up and I have a permanent ileostomy.

Tink22
Jul 20, 2025 11:37 am

Ulcerative colitis to cancer at beginning stages in the colon to ileostomy. Gastro doctor wants me to get my rectum removed (my dad had colorectal cancer), and my surgeon says it will be painful with a long healing process. I may have to suck it up and get a Barbie butt before cancer bites me in the butt!!

debbiedeeds1
Jul 20, 2025 12:59 pm

I had a blockage that came out of the blue. It turned to sepsis and I had my colon and part of my intestine removed, which has led to an ileostomy.

Doe1mama
Jul 20, 2025 1:07 pm

I joined the club for my husband, who had a previous stroke and really doesn't use the computer. After a knee replacement, he had C. diff and bowel issues that followed for years. He ended up with a megacolon. No one could really explain why, but the closest diagnosis we got, and what made the most sense, was that it was caused by toxic C. diff. A surgeon wanted to remove part of the colon, but she couldn't promise he wouldn't wake up with a colostomy. My husband, being who he is, refused because he didn't want me to have to take care of his colostomy. His stroke affected his dominant side, so he would really have trouble. He ended up with a perforated bowel and an ileostomy. Luckily, it was only gas and not stool that escaped. That was 3 years ago. I'm a retired nurse, so I have no issue doing the ileostomy. Joining this group has helped me with many issues we had. Welcome. You'll find help and amusement here.

IGGIE
Jul 20, 2025 2:56 pm

G-Day Tink,

You're still young enough to get the Barbie butt, which will give you fewer problems in later years and also stop all the micas that do happen. And no chance of anal cancer. Good luck.

Regards, IGGIE

wdrichmond7
Jul 20, 2025 2:57 pm

I was treated for prostate cancer with radiation therapy, which burned the inside of my colon next to my bladder. Eventually, this became a fistula between my colon and my bladder. I was getting gas from my colon into my bladder and urine from my bladder into my colon. This caused a UTI and sepsis. The remedy was to sever the colon and make the upper part a colon ostomy. Then, to stop the urine from continuing to enter the lower part of my colon and exiting my rectum, I was given a suprapubic catheter to divert the urine into a leg bag.

rlevineia
Jul 20, 2025 4:33 pm

Started with diverticulosis, which got worse. Had trouble absorbing water. The hospital gave me C. diff, and it ate my colon up. Off to Mayo for an ileostomy. Best hospital on earth. I loved their caring staff, top surgeons, accommodations, and 5-page menu! The view of their campus? Meh. It's like a big city,


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Redondo
Jul 20, 2025 4:40 pm

When I was 16, more than 50 years ago, I got Crohn's. At that time, no one really knew much about it. My doctors tried treating me with prednisone, sulfa drugs, and Imuran. I almost died. I somehow got better until a short time later, my father died and I married. The stress brought back my Crohn's. At 23, my GI recommended putting on a temporary ileostomy to give my bowels a rest. It worked for a couple of years, but then it spread throughout my entire large colon, rectum, and appendix. At 26, I had all of that removed, and it became a permanent ileostomy. It took a couple of years for everything to finally settle down, and it's been a great life ever since.

Bob430
Jul 20, 2025 5:08 pm

I suffered for many decades with Crohn's Disease. In 2014, I was diagnosed with stage 3 (the low end) colon cancer. Most of my colon was removed, and I had a resection. I was given the option of an ileostomy back then but resisted; I was just not ready for it. For the most part, it was okay, but if I had a Crohn's flare-up, it would send me to the toilet 15-20 times a day. Very exhausting, to say the least. This lasted a good nine years, and then there were signs the cancer was returning. This time, there was no option, and an ileostomy it had to be. I had that done in the spring of 2023.

After two plus years, I can tell you my quality of life is much better. No abdominal cramping or desperate runs for the toilet. I can hop in the car for a long ride without stopping or get out for a hike without the stress of not knowing if I'll make it the whole way. I even did the "Slotzilla" Zip Line in Las Vegas! (Look it up; it was a real thrill.) I would not reverse my ileostomy even if that were an option.

I've done pretty well so far, but I was determined from the start not to have this situation make me miserable. Just a new routine to get used to. I do try to have fun with it sometimes. If we're going out and someone asks if I need the bathroom?

"No thanks - I'm going right now!"

Bets
Jul 20, 2025 5:22 pm

Hi everyone, I am Bets. Mine started with my oncologist, who was going to remove my girly parts and a tumor that was growing. The CT scan showed this sizable tumor, and a GI surgeon was with the oncologist as the tumor was encasing my colon. I had a loop colostomy as it would have been possible to reconnect, but it did not turn out that way. The oncologist decided not to touch my insides as all my organs were stuck (frozen pelvis). So since January 2024, I have a colonoscopy, which I can handle if it were not for it prolapsing a month after surgery. I still have my tumor and parts as I had made the decision not to have this very complicated long surgery and let it just be. My GI surgeon is going to schedule me for a revision. I am 80, and I believe I made the right decision. The tumor has pinched off my urinary tract, but it is manageable as I get a stent replaced every 3 months to keep it going. Thank you.

SusanT
Jul 20, 2025 6:30 pm

Welcome to the site!

Were they considering a TPE (total pelvic exenteration) where they remove all organs in the pelvis?

If so, that is a brutal surgery, and I don't blame you for giving it a pass at your age. I was only 63 when I had that surgery, and I'm still recovering 11 months later.

If you change your mind, hit me up, and I will share what I've learned and some other resources.

jjohnson.jj84
Jul 20, 2025 7:31 pm

My ileostomy was an emergency situation. I had had a colonoscopy a couple of weeks before, and they found pus in my colon, so I went on Augmentin for a couple of weeks to clear it up. After I finished with the antibiotic, I woke up one day throwing up and having diarrhea both for a day. I thought at first it was just a stomach bug, but I wasn't getting any better and was getting weak. I made the decision with my husband to call 911 that night. I was taken to the emergency room by ambulance to our local hospital, where the ER doctor made the diagnosis of C. diff, which I had never heard of. I went into the hospital on August 28, 2024, and had surgery for the ileostomy on September 1. They tried giving me antibiotics to clear it up, but my colon was just swelling and almost burst during surgery. I was in intensive care for a few days, got sepsis, and then moved to progressive care afterward. I found out about the bag after I came to and after much prayer from friends and acquaintances. I was just glad to be alive, so a bag on my side was not a big deal. My legs were about three times their normal size from all the fluids that they put in me. I finally got out of the hospital on September 6 to go to rehab so that I could have therapy to begin to get back in shape, be able to walk, and regain my strength. It's almost a year now, and I feel better now than I have in a long time. I didn't realize how common all this was until I stumbled on this site, which has given me a lot of information. I'm still learning about this new journey in my life. My husband is my caregiver and is wonderful.

Iceberg
Jul 20, 2025 9:44 pm

Went under for cancer of the uterus, woke up to a permanent stoma, apparently a tear in the intestines that was supposed to be an overnighter at the hospital led to a 12-day hospital stay, should get out Tuesday morning,

nonie
Jul 20, 2025 10:11 pm

Rectal cancer.

Loop ileostomy was supposed to be temporary, but at age 82, and now with the cancer having metastasized to my lungs, I'm not thinking I want to deal with surgery and recovery and poop accidents and so on, so I am probably just going to keep it. If I only have a little life left in me, I want to spend it having fun, walking on the beach, doing things with my kids and grandkids and great-grandkids. Dealing with "Winnie" has become quite routine now (11 months), so she isn't much of a bother. It just seems living with her is easier, less stressful, less painful, and a helluva lot more fun than dealing with surgery and its aftermath. There isn't anything that I can't do with Winnie hanging on me. It's very likely she'll be with me for the duration.

Klassmom
Jul 21, 2025 3:39 am

I also had a perforated colon, which led to sepsis and near death. It appears that I had a mass at that time on my rectum, and now we are dealing with it, rectal cancer, as I'm guessing I was not strong enough physically in September when I got the colostomy.

AlexT
Jul 21, 2025 4:13 am

Great attitude. 👍

Andrew82
Jul 21, 2025 1:44 pm

I had UC in my 20s until I eventually lost my colon. I got a new lease on life after the ileostomy and have been keeping on keeping on ever since.

Bets
Jul 21, 2025 4:42 pm

Susan, the oncologist never mentioned TPE. He wanted to do this procedure again this past June, but after reading about the complications, I decided not to have it done. He never got a biopsy. Originally, I thought I had colon cancer, but my GI surgeon had me get a sigmoidoscopy. He got a biopsy, and there was no colon cancer. My GI surgeon wanted him to get an endometrial biopsy, and he did a D&C, but again he was unable to get a biopsy. Bigham Young Women's Hospital has a gynecology oncologist who wrote an extensive article on frozen pelvis that convinced me not to have anything done except having my stoma revised so it does not prolapse.

Thank you for sharing the information on TPE. I appreciate it, as I did not know what that was. You must have gone through hell with that. Please, I do hope you feel better real soon.

Bets
Jul 21, 2025 4:42 pm

Susan, the oncologist never mentioned TPE. He wanted to do this procedure again this past June, but after reading about the complications, I decided not to have it done. He never got a biopsy. Originally, I thought I had colon cancer, but my GI surgeon had me get a sigmoidoscopy. He got a biopsy, and there was no colon cancer. My GI surgeon wanted him to get an endometrial biopsy, and he did a D&C, but again he was unable to get a biopsy. Bigham Young Women's Hospital has a gynecology oncologist who wrote an extensive article on frozen pelvis that convinced me not to have anything done except having my stoma revised so it does not prolapse.

Thank you for sharing the information on TPE. I appreciate it, as I did not know what that was. You must have gone through hell with that. Please, I do hope you feel better real soon.

SusanT
Jul 21, 2025 5:09 pm

I am much better, thank you. I can unequivocally say the surgery saved my life. But I had become quite sick waiting on surgery, and I really had no other choice. If they canceled the surgery, I was planning to insist on being admitted so they could ease my passage. My husband half-carried me into the waiting room before my surgery. I doubt I would have made it home.

So yes, I went through hell, but it was worth it. I think you are in better shape, and the ostomy will help you cope. (I didn't have my ostomies.) At some point, it becomes a question of quality of life. If you have an acceptable quality of life, it makes sense to forego the surgery.