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How long can you live with an ileostomy

Posted by Bumba, on Mon Oct 24, 2011 4:56 pm
?i have had an ileostomy for 51 years. does anyone have any information on long a person has lived with an ostomy? Also, any information about conditions that are caused by having ileostomy for so many years would be appreciated.
Past Member
Reply by Past Member, on Mon Oct 24, 2011 8:21 pm
WOW .... 51 years !!!!............You just made my day !! I'm almost 12 years out with at least 39 to go..........OUTSTANDING !!!

Seriuosly, 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, BEG
Reply by Xerxes, on Mon Oct 24, 2011 9:37 pm

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 busses here in January...ouch! Live long and well!

Reply by mooza, on Tue Oct 25, 2011 5:52 am
   Wow doubt if i will live that long but 51 years whats the problem ? mines crohns too..                       
Past Member
Reply by Past Member, on Tue Oct 25, 2011 12:30 pm
After 51 years i doubt many of us could tell you much you dont 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 dont 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.
Reply by ambies, on Tue Oct 25, 2011 2:37 pm
Wish i knew the time for longest years with ostomy,hade mine  30 some years now ,not without my problems..And dasterly your right about the kidney stones,not drinkling enough thats me and ive had the stones too,very painful i strongly  think i should be  drinking more im trying lol but hate water.  Heres to more years with ostomy..ambies ...
Reply by tess45, on Tue Oct 25, 2011 5:35 pm
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's want kidney stones - any other things I should look out for?
Reply by strongandbroken, on Tue Oct 25, 2011 7:30 pm
wow...51 years? I'd repeat the sentiment 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 much longer do you want to live and what are you willing to do to retain the quality of your life?

Life is Good!


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.
Reply by mooza, on Wed Oct 26, 2011 5:34 am
Hey yeah i get sick too ,never seem to have enough fluid cant stand arghhh fluid=s bloody fluid kinda like that s song   flood glorious food xxx  same dickie hahah
Reply by MarkP, on Wed Oct 26, 2011 6:01 am
Just reading that you have had your ostomy for 51 years has filled me with hope as I have only had mine for months.
Reply by clippergirl, on Thu Oct 27, 2011 12:24 am
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 everyday...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 then 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.
Reply by kbd, on Fri Oct 28, 2011 3:31 pm
I've had my ostomy for almost 7 months now. I think my brother in law was trying to encourage me by saying 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
Past Member
Reply by Past Member, on Fri Oct 28, 2011 4:39 pm
Noooooooooo sweat KBD,  kinda puts your fears to rest, huh? You're just a "Spring Chicken" !! Have a great "rest of your life" my friend......

Reply by kbd, on Fri Oct 28, 2011 7:24 pm
Thanks Smile
Reply by newcomer, on Mon Oct 31, 2011 1:43 pm
Mine was a Genetic Cancer Gene and was complicated so it has been 1 1/2 yrs. for me and I hope to live a long prosperous life, I am 58 now so we will see. Happy Halloween my stoma friends.
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