Life with an Ostomy: What's the Average Age?

I suppose I’m not average. I got mine at 40 and still figuring things out. Full life, job, three kids, marriage, here I come!

Hi. I had my illeostomy at 12 yrs old. I am now 76. Guess I beat the odds!

Clara, I got my colostomy when I was 64. I have multiple sclerosis and it has given me gastric paresis; my gut's nerves don't move food through. It was a big change, but it at least let me leave the house and have some vestige of regular eating. Prior, I was having rocket diarrhea and projectile vomiting daily, and eating was impossible. I lived on saltines and water. I was fortunate to have doctors that figured out what I was experiencing and decided a colostomy would offer relief. 😮‍💨 I'm now 70 and it's been a positive addition to allow me to live my life.

48 years old when I got my ileostomy 27 years ago because ulcerative colitis ate my colon. I remember telling my surgeon to rip the damn thing out and feed it to the dogs. Never looked back.

You don't mean that Trump's people dehorn Herefords? Prime example of my failing memory.  A polled Hereford is born without horns because of years of effort on some people's  part. No need to do it again. Good movie by the way. Jimmy Stewart is one of my two favorite actors.

Words of Encouragement from Ostomy Advocates I Hollister

I was 81. I had wrestled with ill health for 4 years, but I was stubborn. When I had to have emergency cancer colon surgery, my intestines had deteriorated so much that, per surgeon, he could not staple anything (boy, was I glad), but had to use his best tailor technique to suture them together with catgut.  Of course, a couple of other organs left their home and I don't miss them. I am 84 now, as we are all different and come from different places and circumstances, do I want to live like that?  NO.

Maybe if there were a local group, I might feel a little more upbeat at times. Maybe not, as my innards are playing tricks on me and I have not been out of the house in 3 months.

Well...u found this group..

We will beat u up..err umm  i mean.. keep u upbeat..  no worries. 😊

Keep me upbeat, Warrior.  If you beat me up, Warrior, I will fight you guerilla style. I have had a lot of practice  but am still not good at it. But it's all I know.

Practice makes perfect! 😁😉

Everyone needs a punching bag. We are here.

Punch, vent, scream, cry, fight (rarely), agree to disagree more likely.

We get it.

  Warrior... the weasel is watching U... her whiskers are wiggling... not a good sign.  

🔒 Login to see image

🎙🎶I always feel like...some🎵body's 🎵watching meeeeee... and I have no privacy. Oh oh oh 🎵..🐱🤦‍♂️

I have had my stoma for 13 years; I was 53. I had a perforated bowel, so it was an emergency operation, and I am so thankful for it saving my life.

72, 4 months

Great post Beth 22. The other thing that makes a huge difference in my view, is US vs UK health care systems. My son lived in Nashville for 10 years, and in my experience there are pluses and minuses of both systems, but they are very different.

I have two as well. My doctor says I'm an "overachiever"… they both saved my life, so as much as I don't like it, I'm lucky to be here. I have an ileostomy (2021) and a colostomy (2022) - how about you? My doc says we are a rare bunch who have two.

For the poll, I was 60 and "healthy" before suddenly becoming sick from UC.

Hi Clara,

I had my ileostomy earlier this year when I was 44. I'm 45 now!

Hi, I had cancer, so I have both a colostomy and urostomy. Doing okay; they moved in 3 years ago. 👋

Hey Clara, Michael here. There's so much to talk about regarding the two support groups. One group consists of people who have had their ostomy for 50-60 years and are still going strong. Their lives are enhanced. Not knowing your journey, I will share with you that mine was filled with suffering from severe ulcerative colitis; I couldn't do anything. And today, I wouldn't give back my permanent ostomy for $200 million. This ostomy has enhanced my life in ways I never could've imagined. In short, there is no time limit. Stay well, stay strong. Michael

Hi there,

I had my ileostomy at 16 and am now 62 😀

Still mad keen on swimming and keeping fit, carried twins and had a healthy pregnancy and normal delivery. My time in the hospital having my ileostomy all those years ago shaped me, I feel, to be a better person, to grab life and put small problems into perspective. It also gave me a great nursing career.

I've had mine my whole life of 55 years. I had Hirschsprung's disease when I was born. It doesn't limit me at all, and I've had no problems with it.

I have had my ileostomy for 12 years. Now I'm 68. I had UC for over 20 years. It's something you have to manage but I feel great. I probably would have been gone 10 years ago if not for that surgery. They removed 2 diseases, cancer and UC and fixed a hernia. Just got home from a cruise through the Panama Canal. Always a bathroom close on a cruise. 

I was a week old when I got my first ileostomy in 1963 due to internal birth defects. Then I got my urostomy in 1979 almost 62, and doing great 😊

We had a guest speaker at our Ostomy Support Group last week who has had an ileostomy for 38 years and no significant concerns or issues. He even confessed that he eats popcorn!

Hi ClaraD,

I have a female friend who has had her stoma and bag since her 20s in the late 70s. She is in her early 70s now and has lived and is living her best life in Ely, MN after retiring about 5 years ago from KC. They love the cold and snow, the crazy buggers!

She was my first call when I was told I had colon cancer after 26 years of UC. That was early 2016, and I'm heading towards 9 years next spring of getting along okay. Of all the health issues I have, the stoma isn't what is going to get me, and I doubt it will get you!

ClaraD:
I loved reading your query and all the posts. For the record, I had a prophylactic ileostomy at age 57, a few years ago. No symptoms whatsoever, but 3 decades of high surveillance screening (twice annual colonoscopy, a couple of endomucosal resections -- basically a D&C of the colon) and eventually 'high-grade dysplasia'--the path assumed to develop into colon cancer with no clear timeline. As a heterosexual woman of a certain age, a consumer and a care provider, I would say that it has been a great screening for partner-finding. I believe that most of the work, so long as you have a good surgical repair and no major issues with the actual stoma, is psychological. For me, absent acute or even chronic symptoms, I see it more as how challenges help us learn how to cope. Deep in the lifetime learning school of thought about whatever comes our way. Getting used to diversionary surgery is more a mental obstacle for most, in my humble opinion. Finding like-minded humans, or at least those who have some lived experience, has been one of the most rewarding, humanizing aspects of the entire adventure into losing a non-essential organ.

Reach out if we can be of any support as you sort out your path forward. This group is not easily offended, and an unlimited unique community, as you have already seen from the panoply of responses. Be well. Live well. - a fellow Ninja girl

I received my ostomy when I was 15 1/2. I'm now 76. Most of my life it went well. However, the last year or so I'm having digestive issues again. I have no colon or rectum. I appreciate that I was so healthy for so long.

I got my ileostomy at age 24. I am now 75, 51 years later.

Hi again everyone 👋

Thank you all for sharing your experiences. Each and every reply I read on this thread has given me a little more hope than I’ve had before. 

To all who have (and those who still will) share their stories, know you have given me, and I’m sure others on here who are pre op or a new to the Ostomy world a gift with your kind words, humor and very real numbers. 

Clara 

G-Day Bumba, Wow, 64 years with an ileostomy, you take the cake and well done Bumba, well done. I admire you for the length of time you have had an ileostomy; it has to be a record, 10 out of 10. Regards, IGGIE