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

Hey everyone!

Not trying to offend anyone here—just genuinely curious and slightly worried and looking for some wisdom.

I read online that the average age of getting an ostomy is 68, and some studies show people living up to 30 years with one! That’s why they call it a ‘full life’ but what does that mean if you get an ostomy at 35, life’s over by 65? 🤔

Also, can we make an informal poll here—what’s the average age of getting an ostomy? If you have one, drop how old you were when you got it and how long you’ve had it. Would love to hear your stories!

Thanks 

Clara

Hi Clara,

I had my permanent ileostomy surgery at age 42 and am now nearly 58 so have had it almost 16 years.  Previous to the surgery I  had Crohn's for several years so not only did it give me back my health it also gave me a life worth living (as opposed to the walking dead zombieland that is Crohn's!)

I have a friend in Oz who is the same age as me and she has had her ileostomy since the age of 10 so hers has been around for 48 years.  I met her just before I had surgery and she certainly put into perspective of day-to-day living with one and how it's not such a big deal, her advice in the early days was invaluable, I was so lucky to have met her.

There are many long-timers on here so I look forward to seeing the responses.

Cheers,

Jo 😎

Got mine when I was 79 in 2022. Live up to 30 years with one? Don't know if I want to hang around till I turn 109!

@Clara.. don't...believe...everything...you read..online..

Cite your sources because they sound way outdated.

I was 65, granted a colostomy in 2022.  

There are many variables to consider.  Most studies only research a few, like age and gender.  

Other important variables:

 Underlying intestinal disease

Surgeon experience

Comorbidities

Hospital type 

Medical insurance type

Ostomy type: ileostomy, colostomy, Urostomy.

Ostomy type:  Single bagger or Double bagger.

Patient age

Patient weight

These variables have an effect.  Do they affect Patient longevity?  Good question.

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

One thing about trying to research ostomy online is that it doesn't know much at all, lol. It just gives the basics, and people get ostomies at all ages. There are newborns that end up having an ostomy; I've seen 2 and 4 years old. I was 35 when I got mine, but it should have been done a lot sooner. And having an ostomy doesn't mean life is over or your life is shorter. We never know when our time is or how it's going to happen. I lost my best friend, and he was only 25 years old, in perfect health with no health problems at all. He had a good career, a house, etc., and someone ran a stop sign and hit him. At 18, a family friend, who was more like family, died because he got hit by a drunk driver. The list goes on. We don't know our time or how it's going to happen.

I was in my 50s when I got mine. It doesn't cut out your lifespan. There can be complications, but most are far and few between, and most complications can be fixed. Don't know where you read that, but it's untrue.

Hi Clara

Plenty here have had an ostomy since childhood or as a teenager; you're going to live forever 💪

I got mine when I was 28; now I'm 57 with lots of time left on the clock (God willing).

I am involved in an in-person support group with plenty of people breaking the 30-year ceiling.

Like they say in some old sci-fi show, "Live long and prosper," and an apple a day doesn't hurt. 🤣

Got my ileostomy when I was 57, still 57.  Stoma 4 months old.  But.......

My mother was 28 when she got hers and she's 84 now.  So she's had hers for 56 years.  She's still going strong.😀😀

Ok, 2014 for colonoscopy born 1952 so I was 62 years. Parents lived into their 80’s. I know I will not make 124, so well past middle age. I posted something about this a couple years ago.

Polling the general topic of an ostomy needs further addressing because of the reasons why they got it and what poll results you seek from the different groups of ostomates here.

1- You have people with IBD

2- You have people with an ostomy due to bladder or kidney issues

3- You have people who had colon cancer.

4- Other people who get tears in the lining of their colon or strictures.

Categories... It's a lot to vote on when just saying ostomy. How old were you?

So what category are you most interested in polling?

There might be specific numbers of people with just IBD who eventually get an ostomy. Myself, that polling would interest me as a person with IBD.

As same for urostomates and colon cancer patients.

For example, I joined this group hoping to find other people who had lost their hearing from IBD.

Excuse the resulting pun.

Dead silence.

On a lighter note regarding polls and voting... and November soon...

Perhaps we bring in Trump's

campaign people to "help" with the polling? 😁

Had mine at 17, 1986 and still here.😁

I was 52 years, 3 months, and 2 days old. I'm now 18 every day. 👍

I was 21 when I had my ileostomy surgery.  I'm about to turn 82.  You do the math.  

I had my colostomy two months before turning 55 & without it I would’ve never seen 55.  I just turned 56 this month, so still a relative newbie.

Not sure where you’re info came from, but a lot has to factor in to survival rates; general health, medications, what brought the need for the ostomy in the first place, life style, heredity, etc.  I wouldn’t worry about numbers, we are all different and even if I died tomorrow this would have all been worth it because I’ve had this year with my family and it’s been good to be with them and not sick

And...aging never looked so good!  👍

Hi, I was 67 when I got mine. Cancer. I have 2 of them. Doing well. Life's good 😊

G-Day Clara,

Instead of worrying about how long you have to live with a stoma, ask how long you would live if you never got your stoma.

I got my first stoma 21 years ago to let a J-Pouch heal, put up with the J-Pouch for 18 years, then told the surgeon to remove it, and I went back to a wonderful ileostomy and life is good. Regards, IGGIE

I got mine when I was 44 and a half, and I am 47 now. I haven't had too many problems with mine other than a relocation and one blockage. Nothing serious. I do have 3 incisional hernias that need repairing. But other than that, pretty healthy. I plan to live a long time with my ostomy.

Hi Clara, I got my ilieo in my mid-thirties and now I'm 73, and just celebrated our 50th anniversary Saturday.

I got mine when I was 16. I am 48 and have fathered two children and had a full career. No issues now and still squatting 250 lbs at the gym with an active social and romantic life. All of my dating issues were around being short, not about the ostomy. The ostomy was never a deal breaker for potential partners, although I didn't bring it up until late enough that the shirt was already coming off.

I was 19 when I had mine; I'm 55 now. Let's not say how long that is; I feel old enough as it is, lol. I would have been dead by 25 without mine. I love my stoma to bits for giving me the greatest gift of all: life. I think you've come across some dodgy stuff while googling online by someone trying to create a stigma by writing bull crap. Having a bag isn't a death sentence; you can live to a ripe old age just as anyone without one. If you have a local IA group, you should go to one of their coffee mornings. You will be surprised how long some members have had ostomies, and it's good to listen about the very few products they used to have to use. It always makes me feel spoilt about the choices of the products we have now.

I raise my hands in defeat, these ‘polling results’ have completely proven me wrong, and I must say it’s one of those times I’m glad to be proven wrong.

I sincerely thank each and every one of you for replying and setting me straight. Your insights are invaluable. 

@warrior, you are so right, believing everything I read online isn’t a smart move. I’m glad I came here to get the facts from you guys. You also nailed it with your point of comparing apples to apples- my original statement is way too broad.

@axl not sure I want to live forever, would be a rather lonely life. 

@kas, your comment really hit home. I actually remember asking my GI when he first mentioned a stoma, “Will I be able to make it to 60 with a stoma?” He turned it around and asked me how I planned to get to 60 without it, given the state I am in. It’s true—we all make these choices because we have no alternative, and every extra year we get is a gift. Maybe it’s not about how long, but how well we live in the time we have.

Nailed it, sweetie! 🔨

No one forgets their operation, do they, Henry? 😊

I was 19 when I got mine, 49 years ago.

Wouldn't be alive without it.

Lived and living a normal life, worked, had children. Hoping I have a few more years to live yet

Hey. Happy Birthday 🎂🎉🎁🎈 

Thank you!

25 for me, but I was diagnosed with my UC at 19, so it was a battle for a while.  Also my GI surgeon informed me post surgery that my colon had died, and my blood was toxic when I came in for the surgery.  I wouldn't have made it past the weekend without it.  Clara I'm not sure there's a direct correlation between the average age of getting a colostomy and the years you live with one.  Perhaps I'm misreading your question, lol.