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

X_
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 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.
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.
kbd
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......

BEG
kbd
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.
Reply by ambies, on Mon Oct 31, 2011 2:01 pm
Happy Hallow's everyone ...ambies...
Reply by toughangel, on Mon Oct 31, 2011 6:48 pm
I have had mine for 41 yrs. I also have had kidney stones.Sometimetimes I get a lot of sores that take a long time healing,The only bad side effect I have had ia I have infected oil & sweat glands & sometimes they HURTbad,had surgery Derma.DR. said no cure but they try to slow it down,both ostomy & gland problem they say is from uclertive colitis. Anyone else have this problem?
toughangel
Reply by ZACK, on Tue Nov 01, 2011 9:02 pm
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 my age.
Reply by ron in mich, on Wed Nov 02, 2011 10:13 am
hi all i,ve had my ileo. now for 26yrs. and yes i have problems with kidney stones and have had emer. surgery for kinked bowel adhesion blockage but turned 60 this year and plan on many more.   take care all ron.
Reply by nogutz, on Wed Nov 02, 2011 10:59 pm
All these high numbers are very encouraging,Just gives me that little bit more hope,thank you All.
Past Member
Reply by Past Member, on Wed Dec 07, 2011 9:40 am
My surgeon who performed my Ileostomy said I can live a normal lifespan. I have had mine since 1/12/2009
Reply by LilyJ, on Mon Dec 12, 2011 5:39 pm
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 life span.
aeg
Reply by aeg, on Thu Dec 15, 2011 3:14 am
I have had my ileo for 26 years due to
Crohn's
. I am 55 and healthier now then when I was younger. Took me several years to learn what my body was telling me. I know more now of 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 ck & appreciating the simpler things in life. I often wonder if I would be as good a person if I went through life healthy.
Reply by Bumba, on Sun Mar 18, 2012 7:05 pm
Wow never thought I would get so many responses. My illeostomy is due to ulcerative colitisat 12 yrs old. No kidney stones yet but kidney disease. Not anywhere near need for dyalisis  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 yrs in so to say.  Thx for all responses.
Reply by ZaliBee, on Sun Jul 08, 2012 8:02 pm
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.
Reply by PamSue, on Sun Sep 02, 2012 6:31 am
36 years and counting!
Life expectancy is probably better as most ostomates pay more attention to diet and health issues
Reply by moonshine, on Mon Jun 22, 2015 1:32 am

Think of all the body parts we can actually live without. Colon's, Appendix, gallblatter, stomachs, lungs, thyroid, spleen, kidney, limbs, and oh yea, uterus's ovaries.....what else guys?????

 

Reply by Julie4evert, on Wed Mar 29, 2017 11:54 am

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

Reply by Earl, on Sat Apr 22, 2017 10:48 pm

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 ones' kidneys do not like being in a state of dehydration.

Earl

kbd
Reply by kbd, on Sun Apr 23, 2017 1:52 pm

Wow! that is a long time with an ileostomy.

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

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