Longevity of Life with an Ileostomy

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?

Hello Ohio!

I do drink a great deal of water on a consistent basis. About two quarts a day and more when I am exercising. I really watch myself when running and even when I am golfing during the summer.

Being a long-term ostomate, I have lost some kidney function, but I am at about 80% of normal. Periods of not drinking, such as when I have had blockages, is definitely hard on one's kidneys and it apparently can damage them.

I hope this helps.

I might add that from age 15 until now (age 72), there is nothing in life that I have wanted to do and was held back by my ileostomy. In 1972, my wife and I backpacked through Europe for two months. Those were the days of gluing the pouch onto skin and hoping for a day or two without leakage.

A friend here in Vancouver, Rob Hill, climbed Mt Everest and K2 with an ileostomy. He is quite the guy. He was sponsored by Convatec.

All the best,

Earl

Awesome that you have been able to do so much. Useful information! Thanks, Earl!

A surgeon spoke at our recent ostomy meeting. She said that the average life expectancy after an ostomy was 20 to 25 years. Not sure when that study was done, but there was a member present that had hers for 35 years.

The general life expectancy is about 82 years, but there are many people in my community who live to be well into their 90s. My mother-in-law is now 101 years old, lives alone, and has just given up driving her car 2 weeks ago.

Guess it's all in the genes!

Flowerlady,

I would not give one iota of credence to that statement about life expectancy for an ostomate made by that surgeon. On the other hand, bless your mother-in-law. May she live another 101 years.

X_

I've had my ileostomy for 12 years now. Thankfully, I've had no blockages because I'm very careful about what I eat. I also have a propensity to have kidney stones. My doctor put me on Potassium Citrate 10MEQ twice daily, and fortunately, it has shut down stone formation. Knock on wood, but it's been over 1 year with no stones. You may want to consider that option with your doctor. I previously had 5 surgeries to blast stones before I started this drug. Good luck.

For those of you interested, my father is 88 years old and has lived with an ileostomy pouch for 67 years following an ileostomy at the age of 21. He has had increasing problems in the last couple of years with a hernia but otherwise has led a very active life.

My client, who is 98 years old, has a colostomy and is doing awesome except she eats all day.

I have had my urostomy (urine) for 46 years and the only problem is repeated parastomal hernia. They repaired it once but now it needs to be moved not just repaired. I only have the left kidney so it is too dangerous to risk repairing it now.

I believe that ostomy patients can live as long as the good Lord gives us. I praise God for my life and all of the opportunities He has provided.

Had a aunt that had a colostomy from in her twenties to in her 80s when she passed so you have a long time.