Longevity of Life with an Ileostomy

I have had an ileostomy for 51 years. Does anyone have any information on how long a person has lived with an ostomy? Also, any information about conditions that are caused by having an ileostomy for so many years would be appreciated.

Wow.... 51 years!!!!............You just made my day!! I'm almost 12 years out with at least 39 to go..........Outstanding!!!

Seriously, I suppose it would depend on the disease/injury process that created the situation. Mine is Crohn's, soooooooooo I don't really know, but you certainly made me feel better.

Thank you, buddy.

Bumba,

I've heard that you have a greater chance of getting hit by a bus than dying from complications from an ostomy. Hmmmmm, come to think of it they are raising the fares on the buses here in January...ouch! Live long and well!

X_

Wow, I doubt if I will live that long, but 51 years, what's the problem? Mine's Crohn's too..

After 51 years, I doubt many of us could tell you much you don't already know, but I do/have suffered from bouts of kidney stones. Now I have an ileostomy. Ileostomists lose a lot of fluids, and if we don't replace them, it can leave some of us more vulnerable to kidney stones (I was told 10x more) as I have found. But only got myself to blame for not drinking enough water. Anyway, kidney stones won't kill you! And I don't think an ostomy could either. A friend of my dad's is nearly 90 and has had her ileostomy for over 60 years, so don't think it will be the ostomy that gets me! All the best, DD.

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Wish I knew the time for longest years with ostomy, had mine 30 some years now, not without my problems. And dastardly you're right about the kidney stones, not drinking enough that's me and I've had the stones too, very painful. I strongly think I should be drinking more, I'm trying lol but hate water. Here's to more years with ostomy... ambies ...

You've given me hope too - I won't live another 51 years - but I did not know about the kidney stones - that's a downer - since I am only supposed to drink a liter and a half of fluid total in one day - so that includes jello, soup, and my absolute fav HD ice cream - man I really don't want kidney stones - any other things I should look out for?

wow...51 years? I'd repeat the sentiment again...you tell us!

I had my first attack of Crohn's at 18 and ended up with a temporary ileostomy for almost a year. A decade later I ended up with version 2.0 which is now almost 20 years old. I barely even thought about it anymore because with the proper diet and care it should allow you to lead as normal a life as is possible.

Here's where I dropped the ball. In the late 90's until 2005 I did my best version of Superman and rode the great start up bubble that everyone I'm sure rememebers. I worked for a start up in the valley and they offered me shares as a carrot and I bit hard. I worked myself silly and stopped following the rules about diet and staying hydrated. Thankfully in 2005 they went public and I decided it was time to sail off in to the sunset.

I started to get little clues but ignored them and eventually ended up with kidney failure in 2006. I have been a dialysis patient for the last 5 years and realize now just how much I ignored my body.

Staying hydrated and sticking to your diet can save you a lot of grief, let alone your life. Thankfully I'm able to now focus a lot more on what matters and with a steady dialysis routine can once again say that if it weren't for Crohn's and End stage renal failure (which simply means I'm on dialysis until I get a transplant) I'd be perfectly healthy.

If you need a lesson on staying hydrated properly talk to a dialysis patient. We take our weight every day. We know exactly down to the ounce what our ideal weight should be and can tell exactly how much fluid we retain each day. We can tell by our blood pressure and heart rate just how we're doing each day. Not to mention blood work once a month. Being a dialysis patient has made me much more aware of the minutia you need to follow to stay healthy. I take very few meds and rarely feel any affects of Crohn's. Believe me life isn't perfect but the last thing I'm worried about is how long I'll live. Dialysis patients live 40 yrs plus. Ileostomy patients live 50+ years as our friend tells us.

The question, I think is...how much longer do you want to live and what are you willing to do to retain the quality of your life?

Life is Good!

Michael

p.s. please forgive me for the tone...I'm new here and after more than half my life I have all but refused to talk openly about this side of my life. This seems like a safe place to land. Thanks to everyone for being so open. I'm looking forward to being an active member.

Hey yeah, I get sick too. Never seem to have enough fluid. Can't stand arghhh fluid=s bloody fluid. Kinda like that s song flood. Glorious food xxx. Same dickie hahah.

Just reading that you have had your ostomy for 51 years has filled me with hope as I have only had mine for months.

I, too, have had my ileostomy for 51 years--since age 8--and don't really encounter any problems now. But, when I was a kid, food was a roulette game every day... I guess that by now I know what foods to avoid and I drink LOTS of water. I also was pregnant 3 times and had two daughters, but lost my second pregnancy because I needed emergency surgery in my 6th month from a kink in the bowel that caused a huge blockage. I have hitchhiked halfway across the U.S. when I was 19 and had a great time. Overall, though, I have to say that my health is better now than when I was young... I work full time as a hairstylist and own my own home where I do everything myself. The only thing I notice lately is my energy level is not what I would like, but I think that is more because of age rather than ostomy related.

I've had my ostomy for almost 7 months now. I think my brother-in-law was trying to encourage me by saying that after his grandpa had an ostomy, he lived another 15 years. I thought, man, I'm hoping to live more than 15 more years. I'm in my 40s.

No sweat KBD, kinda puts your fears to rest, huh? You're just a "Spring Chicken" !! Have a great "rest of your life" my friend......

BEG

Thanks

Mine was a genetic cancer gene and was complicated, so it has been 1 1/2 years for me. I hope to live a long prosperous life. I am 58 now, so we will see. Happy Halloween, my stoma friends.

Happy Halloween, everyone... zombies...

I have had mine for 41 years. I also have had kidney stones. Sometimes I get a lot of sores that take a long time healing. The only bad side effect I have had is I have infected oil sweat glands. Sometimes they hurt bad, had surgery Derma. Dr. said no cure but they try to slow it down, both ostomy and gland problem they say is from ulcerative colitis. Anyone else have this problem?

toughangel

Had my ileostomy since 1977; can only add that my doctor even back then said I might live way beyond most folks since he had taken out most of the things that shorten life. I'm 75 now and am often told I do not look anywhere near my age.

Hi all, I've had my ileo. Now for 26 years. And yes, I have problems with kidney stones and have had emergency surgery for kinked bowel adhesion blockage. But turned 60 this year and plan on many more. Take care all, Ron.

All these high numbers are very encouraging. Just gives me that little bit more hope, thank you all.

My surgeon who performed my ileostomy said I can live a normal lifespan. I have had mine since 1/12/2009.

My ileostomy surgery was first performed 40 years ago this coming June. Due to Crohn's, I am on my 5th stoma! But still have all but maybe an inch or two of small bowel.
Actuarial charts indicate we live a normal lifespan.

I have had my ileo for 26 years due to
Crohn's
. I am 55 and healthier now than when I was younger. It took me several years to learn what my body was telling me. I know more now about what to eat and drink and to follow the little warning signs telling me I should not have done that. Having gone through life not feeling well has mellowed me, keeping me in check and appreciating the simpler things in life. I often wonder if I would be as good a person if I went through life healthy.

Wow, never thought I would get so many responses. My ileostomy is due to ulcerative colitis at 12 years old. No kidney stones yet, but kidney disease. Not anywhere near the need for dialysis. I have traveled all over the world and have had a good life. I was just curious about the longest. Glad to see there is someone out there with 51 years in, so to say. Thanks for all responses.

51 years is awesome. My father is 74 and has had his since the 60's. He has FAP and now so do I. Don't worry, you'll be here for a long time.

36 years and counting!
Life expectancy is probably better as most ostomates pay more attention to diet and health issues.

Think of all the body parts we can actually live without. Colon, appendix, gallbladder, stomach, lungs, thyroid, spleen, kidney, limbs, and oh yeah, uterus and ovaries.....what else guys?????

I signed back up to this group because I've wondered the same thing lately. I've had the same ileostomy for 47 years..a real antique!!

Hi,

I have had an ileostomy since 1960. Other than a few blockages and kidney stones, I have a remarkably good life. Dehydration has always been a concern since I am aware that one's kidneys do not like being in a state of dehydration.

Earl

Wow! That is a long time with an ileostomy.

What steps do you take to avoid dehydration if you don't mind me asking?