Reevaluating Life Expectancy - Ostomy & Uncertain Times

Before my ostomy issues showed up, I expected to live near to my parents' ages when they died. They were in their upper nineties. If I do not have any new ostomy issues, should my expectations remain the same? Insurance companies are saying that people are going to live longer. From what I see on the news, I am not sure. Entertainers, politicians, sports stars, and other VIP-type people that make the news are dying off before their time. This is just something that has been on my mind the last little while.

You have a very good question! I would love to know the same. When we have "parts" taken out of the body, it can cause stress on other organs. I don't care what the doctors say. Sooner or later it affects other parts of the body. For me, I have kidney stones all the time now. Never had them before my ileostomy. And my left kidney has lost about 20% function in the last 10 years. Sooner or later it will fail. I am 49 years old now.

I would love to see some data on life expectancy for those of us with ostomies.

I agree, a very good question. We have a few members on here that have had their ostomy for 50+ years and are still going strong. I think the base issue is why the ostomy was required in the first place and how much damage was caused prior to the op. In my case, I had cancer and the radiation and chemo associated with it. I asked my doc frankly, how much age can I add to my natural age to compensate. Off the record, he said about 10 years. I can only speak for myself, but I consider every day above ground a good day. Let's remember that quality of life is more important than sheer numbers of years. I have had 15 years with the bag and without the cancer....it's been a pretty good ride even if I kick over tomorrow. Regards. MMsh

Hey MMSH, I'm not sure I understand your doctor's reply to your question. Did he mean you could expect 10 more years from the procedure?  That sounds like a good guess if you were around 85 when you asked.  

Stay above ground my friend for as long as you want.

Mike

Sorry to confuse you, Mike. He meant to add 10 years to my current age... so I'm now 57 in actual years... but I can consider myself 67 considering the radiation and chemo.

My Ostomy Journey: LeeAnne | Hollister

Hello xnine. I have never bought a newspaper for the reason that they seem to always report the bad news rather than the good. Watching some of the programmes on the TV it would appear that there are many more older celebrities still performing to a ripe old age. Perhaps we only hear about those whose lives come to an end so as to keep us informed - a bit like an obiturary column!  Maybe a more productive way of looking at the ostomy issue is to guess at how long you might have lived if you didn't have a stoma.  I expected to die before I was sixty because that was the life expectancy of the males in our family. I am now almost 72 and it doesn't yet feel as if I'm ready to pop my clogs soon.  I'm not sure how much this is down to the new lease of life the stoma gave to me or the CPAP machine which worked wonders for my feelings of fatigue. However, it seems clear that I'm well past my life expectancy so for me the stoma has been a welcome gift even if it does mean I have to maintain it on a daily basis! 

Best wishes 

Bill

Holy crap MMSH!  That means I'll be 85 this month!  42 was my target as so many guys in my family cashed in (or out) at that age.  I like Bill's perspective and, though I never met your doctor, I don't like him.  Just kidding.  Thanks for clearing things up.

Mike

https://en.wikipedia.org/wiki/Deaths_in_2015 Just

As an example

I take the approach that according to statistics, the average life expectancy for males is around 75. In order for me to reach that, and because some will live longer (as will I), others will have to pass on at an earlier age......

....

Of course, there are lies, damn lies, and then there are statistics.

I prefer to go by the old adage, "only the good die young," ergo I will live forever, so far so good.

Ed

Hi all, I got my ileo at 34 and I am now 64, so it gave me 30 pretty good years so far and I don't see any end in sight, knock on wood, as far as health goes.

Ron,

Have you had a lot of complications? I have had my ileostomy for 15 years and have had 5 surgeries. Parastomal hernias, midline hernias, bowel obstructions, mesh infections.. It has not been a smooth road. How about you? Have you stayed clear of complications?

Hi Kruzer, yeah I've had my share of complications starting with a complete blockage due to scar tissue that required emergency surgery. I've also had various food blockages that passed on their own with a lot of pain. I've also had a lot of kidney stone problems, and my hernia is about the size of half of a grapefruit, but my doctor and surgeon won't do anything about it unless it causes a blockage. But I am still glad I had surgery or I would be pushing up daisies.

I have had all the same complications. Interesting how the pattern is.. Glad to hear you are doing well.

I have had too many stones to count. But on good meds now to keep it away for the time being.

Best of health.

Kruzer

Hi Kruzer, what kind of meds are you on? My urologist didn't mention anything for stones other than water with lemon juice in it.

While no one can really say how long you will live, live life to the fullest. As for me, I was 15 when I had my surgery (I was given 2 weeks to live) and am now 68. I worked, married and had one child (by choice), have traveled extensively from 7 weeks in Australia and New Zealand, all 50 states, 7 months in an RV, flown, cruised, etc.

Sure, I have had accidents, but you clean up, repouch if needed, and go on your merry way. Life is what YOU make of it, not what someone tells you it will be.

rvhumbug

Well said.

Well, I am 73 and have had ostomy issues. Anyway, I think having an ostomy is a blessing compared to having a sick colon.

OK, so I have 5 hernia repairs now, one at the sigmoid area then 3 in my belly and then lastly at the ostomy on my right side before I had the last surgery to move the ostomy to the left side.

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Gee MMSH, if I add ten years I'm ancient, but still kicking. My nephew had to point out the remainder of the saying: "Or die in the attempt".
My surgeon offered to fix the hernia, but I pointed out that then it would be repeated every two years, so he suggested if it doesn't hurt to leave it until I need a pant size larger. I agreed didn't tell him these pants have an expanding belt, lol.
The removal of four masses of colon and colorectal cancer, six months of chemo and radiation didn't change my lifestyle a whole lot. I finally stopped working since I lost money if I made too much working, funny thing I have less time now than I did before.
I suggest you use my attitude and sayings, including this one:
Worry about the things you can change, ignore those you can't, ergo don't worry be happy.

I am not a doctor, but I don't believe that an ostomy shortens one's life. In fact, I believe that the opposite could be true as it keeps the "waste traffic" moving, thereby reducing the amount of time that any ingested, potentially carcinogenic matter, remains in your system.

Yes, I believe that too. I have had my ileostomy for 25 years now and have not had a flare-up of my Crohn's since. It has given me a better life, meaning I can now go do things without running to a bathroom and health-wise, no more hospital stays. I was in and out of the hospital since the age of 17-30. It has helped me to do more with my life, therefore having a better quality of life. So, I feel it helps you live longer by being able to do more things, staying active. Anyway, it's not always fun having this, but it certainly saved my life. I certainly feel that.

I was 'awarded' my life-saving stoma at the age of 23. Without the surgery, my 'life expectancy' was approximately 2 years at best.... I'm now 66 years old (67 on Friday 15th December... wish me happy birthday, folks :D). So I guess I can't complain about my extended 'borrowed time'.

Happy Birthday and bless you!

Yes- Happy Birthday!

OldCrohn, you dug up an old post of mine. I appreciate your interest and wish you a happy birthday.

My question is, are people in general not just ostomats living longer or is this fake news.

Thanks for the birthday wishes, friends :D

I asked my GI doc that very question recently (2018) and his opinion was that it (ostomy) would not affect life expectancy in a negative way. Life expectancy obviously depends on a lot of things but having an ostomy shouldn't shorten our lives in and of itself. So, I'm going with that. :)

To your original question: I read longevity, especially in first world countries, has peaked due to unhealthy eating/obesity/junk food etc. So it has declined slightly (in general).

Hi Bill, you seem to be doing pretty good with your CPAP. Me on the other hand, fight my CPAP every night. I consider it the bane of my existence! I know I have to have it and when I don't wear it, I have issues but I hate it tremendously!! I dread having to wear it every night. I hate things over my face and I have to wear the full face mask due to being a mouth breather. I have to take medicine every night to keep me from having a panic attack and if I do have one, I can't wear it the rest of the night. I have tried numerous masks but our VA is limited. I just don't know how to "not" hate it. Any suggestions???

Hello Freedancer.

This reply to your post is as bit late but your post has only just been brought to my attention, so I have only just noticed it.

The concept of trying to help people ‘not to hate’ (anything) is quite an intriguing one and I might have been inclined to avoid tackling it. However, having spent most of my working life helping people to control their emotions, I do have a whole ‘programme’ of pointers which might help in this regard.  These pointers are listed in a book entitled ‘Handbook of self-help Hints’ 2003 (reprinted 2004). Unfortunately, the concepts and their explanations are far too lengthy to attach to a post such as this and they are usually part of a personalised programme that extends over a period of at least a year.

On the other hand, there are some very practical things that I tried with my own CPAP mask which eventually worked sufficiently well for me to get a good night’s sleep without cursing the mask too much. This might be a more practical approach to your problem.

To begin with, the full face mask took off the skin above and around my nose which was painful and impractical. I therefore made a nose inhaler out of copper tubing which I showed to the consultant as an example of what can work and not make things worse. He then prescribed what are described as ‘nose-pads’ which are a much softer and more manageable ‘mask’ to wear. However, I then needed to have some way of keeping my mouth shut because otherwise the air simply circulated up my nose and out of my mouth. This I did at first with a chinstrap supplied by the hospital which was pretty useless, so I made my own from towelling material with a layer of the same material they make wetsuits from, this is secured with Velcro and has done the job reasonably well for a number of years.

I still think that there ‘should be’ a device which we could wear in  our mouths a bit like the gum-shields that rugby players wear, but which would allow the air flow through both the nose and the mouth in the same way that the full face masks do. However, I have not managed to get such a device made so far, so I’m still stuck with the nosepad input and the chinstrap.

I have found that starting off the night with olbas oil in the tubing helps to clear the nasal passage and sinuses, which makes for a quicker and more comfortable sleep .

I hope these comments might help in  some practical way, but it’s a bit like having a stoma in that I’m still not over-keen on having to use it, but the alternative is worse, so I simply grin and bear it!

Best wishes

Bill  

PS: It might be worth mentioning that my wife seems to hate the CPAP machine more than I do as the noise seems to keep her awake at nights!!