Logo for MeetAnOstoMate
Support | Friendship | Relationships
27,382 members

For How long I would be there?

Sun May 31, 2020 5:39 am
"This is the best website for people with an Ostomy, hands down. So much understanding. Everyone should join."

Hi 

I just have some question that I could not resist thinking about... I would like to share with you ...maybe some one have the answers?

1- What I should expect after 10 , 20, 30, years of having colostomy ? my physical condition will be changed when I get older and older so should I expect any need for extra surgical operation will be vital ?

2-For those people that have permenant stoma ... is there any hope they can retun to normal life.

3-Is there any statistical study for the longest living period of time with stoma ?

I just wondering

Sun May 31, 2020 6:37 am

Hello Abdulqadir.

Thank you for these interesting questions.  I don't know the answer to question 3, but I'll have a stab at the other two. 

Having had my stoma for more years than I care to remember, I would say that every-body will experience the phenomenon differently. some might need extra surgery and others not. I have been lucky so far in that I have not needed any extra attention to the stoma. However, as my physical frame deteriorates, I expect that vulnerable areas such as that might need extra attention.  Who knows what will catch up with us first? 

As for 'normal life': I am not sure what this means, as  my life has never seemed 'normal' compared with the majority of other people. Managing the stoma has become routine and therefore 'normal' to me . It has not interfered excessively with me living my life as I would want to, any more than any other irritants might. Therefore, I would say that (for me) it is more to do with how I percieve the thing, rather than the physical management of it. 

I hope this helps in some small way and I do hope you receive lots of replies to your post.

Best wishes

Bill

MeetAnOstoMate - 27,382 members

Sun May 31, 2020 7:50 am

I have had a permanent ileostomy for 12 years and after having previously had Crohn's disease for 10 years before that, my health and well-being vastly improved after the surgery and if I hadn't had it I wouldn't be here to tell the tale (my gastroenterologist told me that if I didn't have an ileostomy I would most likely die of renal failure as I had fistulas connecting between bowel and bladder).

So my answer to 2) is:- It gave me a better than normal life.

I have read in the Ostomy Australia magazine of cases where people have lived well into their 90's and even 100's with an ostomy, some of which have had an ostomy for most of their lives.  I think if the reasons for having the surgery are due to ill health (Crohn's, Ulcerative colitis, Bowel and Bladder Cancer etc), once the procedure is done the problem is essentially removed and we can go on to have long and healthy lives (hopefully). 

Sun May 31, 2020 8:29 am

Hi Abdulkhadir i,ve had my ilieostomy for 35 yrs. and my life has been as normal as possible, i worked 40hrs. a week until i retired, helped my wife raise our 2 daughters, have done some traveling by air and car. T he last surgery i had was due to crohns disease causing scar tissue to close my stoma and some of my small intestine, that was 2yrs. ago and now life goes on.

Sun May 31, 2020 9:40 am

Hi Abdulqadir,

  I'll toss my thoughts in for your 3rd question.......not because I've had my ostomy for a very long time.........but because it's the first thing I researched after getting mine.  Just having an ostomy in no way limits your lifespan, so you won't die of something related to just having your ostomy.  Our lifespans are the same whether you keep your shit inside your body or outside.  It's the underlying conditions (if you have any) that will get you.  Now Bill brings up a good point in that as we get old and lose functionality changing your barrier won't be much fun......especially if you develop arthritis severly.  But really no different than wiping your ass......when you can't do that you pay people to do it for you.........so I'm guessing home health nurses and staff in nursing homes would probably prefer to change your barrier than wipe your butt.  Butt I don't even want to think that far ahead.  When (if) I get that bad I've got a bullet with my name on just sitting in my gun.  Yeah, I know what you're thinking.....if you have arthritis that bad.........how you going to pull the damn trigger?  Well, I'll just say.....where there's a will, there's a way.  

  The other thing to note about ostomies, at least from my experience, is that over time you really do stop thinking about it constantly and get on with living.  It's been 6 years since I got my ostomy, and just now I'm noticing that there are times I forget I've got the damn thing, which I've never done before. So if that keeps up life will get pretty much back to normal.......or normal will adjust to me!

regards,

bob


Sun May 31, 2020 10:13 am

30 years and still counting for me with an ileostomy. Unless you have any problems with your colostomy or anything else then no you wont need any more surgery down the line. I've always lived my life like anyone without a stoma does from the start....NEVER LET A STOMA RULE YOUR LIFE...1 Life live it!!! I have a good friend I've known for years that used to be on this site thats had a stoma over 40 years....there's no time limit on life way way back in history Dr's would of given you 5 years to live at best after having a stoma thank god those days are gone....I know in the future I want to be the oldest living person with a stoma and I ain't going anywhere without one hell of a fight!!!

Sun May 31, 2020 2:44 pm

They are excellent questions Abulqadir.

I guess it is what you define as "normal".

Some "plumbling alterations" can be reversed, but most can't and in a lot of cases there is no gurantee a reversal will be successful.

I do not know of any research that says ones life span will be shortened because of a stoma.

I'm sure you're not the only one who has pondered these questions.

Keep well.

V.J.😀

Sun May 31, 2020 11:47 pm

Hi Abdulqadir, I have had my colostmy for six years. I have not had any health problems from it other than some skin irritations. You just learn to accept it and live as normally as you can. It also helps to have people like the ones on this site to talk to about any problems. Best wishes and stay safe

Mon Jun 01, 2020 3:10 am

I just can not express how wonderful and supported people you are ...I passed 38 years out of 44 with my stoma... so I think little information available about such cases... even I never consider I have a problem, I beleive that God wants the best for us even if we think it is bad ... who know what would be our health situation if we did not have the surgery...
Thank you all again

Tue Jun 02, 2020 11:07 am
Abdulqadir wrote:

I just can not express how wonderful and supported people you are ...I passed 38 years out of 44 with my stoma... so I think little information available about such cases... even I never consider I have a problem, I beleive that God wants the best for us even if we think it is bad ... who know what would be our health situation if we did not have the surgery...
Thank you all again

Hi,

Read the latest post by HenryM. He is truly inspiring when it comes to attitude and longevity of wearing an appliance:)K

Sat Jun 06, 2020 8:30 pm
Abdulqadir wrote:

I just can not express how wonderful and supported people you are ...I passed 38 years out of 44 with my stoma... so I think little information available about such cases... even I never consider I have a problem, I beleive that God wants the best for us even if we think it is bad ... who know what would be our health situation if we did not have the surgery...
Thank you all again


elkoop99 has had his applicance for 40 Years - another contact for you:)K

Sun Jun 07, 2020 12:54 am
kmedup wrote:


elkoop99 has had his applicance for 40 Years - another contact for you:)K


Hi Kmedup

Thank you for mention another ostomate with a long experience than me ... knowing about these people and read about their experience will be supportive to any one .

Thank you again.

Wed Jun 10, 2020 8:15 am

Abdulkhadir,

40+ years for me as an ostomate .  Everyone is different and it's all about mindset.  I agee with the replies you've received.  This website and inspire.com are a godsend!

its comforting to know there are others out there for support and questions and or concerns we may have because when I had my first surgery there was no support and further more no one talked about cancer.  I not only have a colostomy but an ileal conduit as well.  I'm 72 and still going strong because I believe we are all in charge of our own destiny.  Our normal is whatever we choose it to be, everyone is different.  It's about acceptance.   I'm blessed and grateful each day I wake up especially at my age🙏🌞

I may note I also have stage 3 chronic kidney failure which further complicates my health situation.  With much determination and tenacity I forge on 👍

Wed Jun 10, 2020 8:43 am

Abdulkhadir,

40+ years for me as an ostomate .  Everyone is different and it's all about mindset.  I agee with the replies you've received.  This website and inspire.com are a godsend!

its comforting to know there are others out there for support and questions and or concerns we may have because when I had my first surgery there was no support and further more no one talked about cancer.  I not only have a colostomy but an ileal conduit as well.  I'm 72 and still going strong because I believe we are all in charge of our own destiny.  Our normal is whatever we choose it to be, everyone is different.  It's about acceptance.   I'm blessed and grateful each day I wake up especially at my age🙏🌞

I may note I also have stage 3 chronic kidney failure which further complicates my health situation.  With much determination and tenacity I forge on 👍

Wed Jun 10, 2020 8:57 am

I've had my ostomy for  a bit over 14 years. I've had 2 more Crohn's surgeries since but not related to the stoma itself. As my weight/shape changes, the only difference is how the bag hangs best.

Expect to learn a new "normal" for yourself. What & when you can have certain foods or drinks. What underwear work best for you. In 14 years I've learned to kayak, drive a 26' Uhaul and a 37' motorhome, while also pulling a trailer or tow car, and pull a 25' travel trailer. And I've driven the RVs  from the top tip of Washington to the southern tip of Utah, by myself. I've been back to college to finish degrees in business and nursing. I've been a single mom to 3 kids, now 22, 20 & 18 years old.  I've learned to carry ziploc bags and a roll of paper towels for a quick potty stop, even in town. I've bought an SUV with cooling seats that helps with sphincter spasms during long drives. And the handy seats that lower are nice because nobody can tell I'm emptying my bag. Camping in a tent is easier than before. I never have to run for the outhouse in the dark or rain. I can pee in my porta potty, empty my bag in zip locks. I never clog toilets anymore. I can poop standing up. I finally found a use for the hair dryer, to warm up my gasket/wafer/flange, so it sticks better.  An acquaintance goes hunting like he always did.  At 47yrs old, 280#, weak as hell, looking at another surgery, I started going to the gym for a personal trainer. I've replaced 30# of fat with 30# of muscles. My trainer says my legs &  biceps are now stronger than hers. I went from being a couch cushion to hiking 9 miles because the view was great. 

I could go on and on, obviously. This won't stop you from doing or achieving what you want. Maybe your health won't allow you to do what you want today. But try again tomorrow. And remember, opinions are like assholes - everyone has one. Some of us have 2.

Wed Jun 10, 2020 1:07 pm

Hello Abdulqadir,

I had ileostomy/proctolectomy surgery a little over 3 months ago.  I have no answers to questions 1 and 3.  My permanent stoma has now become a way of life.  I was back to work after 6 weeks.  I've been out on the golf course 4 times.  Its been over 5 years since life was this good.  Very few people outside of the immediate family know I have the pouch.  My biggest concern was how I could work without people knowing my situation. I wear a pouch support system that is hidden very well with a loose fitting shirt.  Every now and then my stoma is a little noisy.  I was at the dinner table with family a few weeks ago when it started.  Those around me and I, were laughing so much we were crying.  Those at the other end of the table couldn't hear it and had no idea what we were laughing about.  Point being, when the noise starts don't assume everyone is hearing it.  That was the first time I really had a problem and wasn't ready for it.  Expect problems like that and you won't be as surprised.    

It took me about a month to figure out what system to use and how to use it best.  There are still growing pains but I'm getting through it.  I have back up supplies in each of my cars and my work gear.  I've had one leak while working.  I had a little panic but got over it when I realized it was time to deal with the situation instead of panic.  I've now spent time thinking of different situtations and how I will deal with it.  Hopefully I will react and just get the job done.  Prepare for the worst, hope for the best.  

So far I have been free to expand my diet.  I'm eating foods now that I haven't had for years.  I enjoy a alcoholic beverage every now and again with no issues.  

I had the benefit of a couple of months notice before my surgery.  I reached out to some on this site who gave me great advice and sources of info.  I was even given supplies and was advised to wear a pouch for a weekend in order to see how it felt and what position worked best.  I was able to go into surgery with less anxiety.  It sounds like your situation is similar to mine.  Surgery is pending and you are trying to get the most info.  If that's the case, good for you.  That's the best advice I can give you.  If you'd like to try wearing the pouch before surgery send me a private message with your info and I'll send you some supplies.  

I'm not sure how long you've been dealing with you situation.  I had my UC for over 15 years.  I tried all the miracle drugs and way too much prednisone. I was going to the toilet every hour or two with a unpredicable sense of urgency.  Surgery will give you some sense of control back.  

Stay active on this site and be informed.  There is a lot of info here.  Learn from others.  

Best of health to you, 

SharkFan

Wed Jun 10, 2020 2:16 pm

I have had my stoma 4 8 year I also have a ileal conduit wee stoma so I have 2 bag. I had a major compression in my spine damage all my nerves.

I have had 3 refashioned stomas I had the 1st where I was open up the middle big operation. Next 2 the pulled fresh bowel through. I had these extra operation due to get granulars like little white wart that bleed so much I am anemic. That why the redone the stoma I had the last operation in January.

They are coming back again I see the consultant  last week. Next operation would be cut up the middle again and a new site made it would be under where my stoma is now. But I like the consultant want to wait.

I went to see the stoma nurses they told me what type of new bag I would need and give  me a nice clean up they said I keep my stoma so clean. 

I am like that the company I use to get all my supplies have there own stoma nurses so I get a home visit every week if I want the nurses at the hospital know my stoma nurses so I am very lucky the hospital stoma nurses never discharge unlike most hospital that dont see u once u finish with ur consultant.

I am 62 I have had 12 operation since 2008 all major operation all through this 1st compression.2 of the operation have been on the top part of my back the other in the same lower back that was the worse pain ever worse then my bladder removal .

The point is I carry on with my life I am disabled now all because the 1st compression was left for 6 days I sued and they settled out of court. I would give it all back if I had my health back. I lost 12 years it's been.

I have made the most u have mishaps with the bags leak I have 2 stomas to look after. I change my whole lot every 2 days I use a lot of bags.

I use a 2 piece bag and base plate all I do is un clip my old bag clean then clip new bag on I have used so many types  of bags and base units.

My life as changed so much. I wont say having a stoma or stomas as not made any different it as.

I have had 2 major operation due to hernias so I have mesh the others were incisional hernias.

As my belly as swollen and I have put on weight I wear loose tops if the tops are tight u do notice the bag . I got used to the bags. Good with the wee stoma I put I night bag on and I never wake as my wee gos into the bag.

So plus and minuses. Point I have told u all this I have seen so much pain and suffering and watched and talked to people who are suffering mentally.

I have seen theres always someone worse then u. So just live ur life to the full . As u get older u just get so used to doing ur bags it gets easier. 

Wed Jun 10, 2020 9:26 pm

What a lot of great answers! I have to say the only real problem my stoma gave me (beyond the usual of getting used to the routine and occasional accidents) is the peristomal hernia I got from trying to do too much too soon after the surgery. ("But I feel good, and you said I could do anything I felt up to!""Yes, but not push-ups!") What really gives me fits is not the stoma, but the neuropathy in my feet from my chemo for my cancer. I am having a lot of trouble maintaining physical fitness because my feet hurt if I walk too far, and I can't ride my bike on really long rides any more. I guess the fact I'm getting older isn't helping!

Thu Jun 11, 2020 6:35 pm
Newbie Dana wrote:

What a lot of great answers! I have to say the only real problem my stoma gave me (beyond the usual of getting used to the routine and occasional accidents) is the peristomal hernia I got from trying to do too much too soon after the surgery. ("But I feel good, and you said I could do anything I felt up to!""Yes, but not push-ups!") What really gives me fits is not the stoma, but the neuropathy in my feet from my chemo for my cancer. I am having a lot of trouble maintaining physical fitness because my feet hurt if I walk too far, and I can't ride my bike on really long rides any more. I guess the fact I'm getting older isn't helping!


B12 shots have really helped my neuropathy. Have your drs tried that? I hear you on the sore feet. I use a recumbant bike at the gym to save my feet some. Good luck

Thu Jun 18, 2020 7:57 pm
w30bob wrote:

Hi Abdulqadir,

  I'll toss my thoughts in for your 3rd question.......not because I've had my ostomy for a very long time.........but because it's the first thing I researched after getting mine.  Just having an ostomy in no way limits your lifespan, so you won't die of something related to just having your ostomy.  Our lifespans are the same whether you keep your shit inside your body or outside.  It's the underlying conditions (if you have any) that will get you.  Now Bill brings up a good point in that as we get old and lose functionality changing your barrier won't be much fun......especially if you develop arthritis severly.  But really no different than wiping your ass......when you can't do that you pay people to do it for you.........so I'm guessing home health nurses and staff in nursing homes would probably prefer to change your barrier than wipe your butt.  Butt I don't even want to think that far ahead.  When (if) I get that bad I've got a bullet with my name on just sitting in my gun.  Yeah, I know what you're thinking.....if you have arthritis that bad.........how you going to pull the damn trigger?  Well, I'll just say.....where there's a will, there's a way.  

  The other thing to note about ostomies, at least from my experience, is that over time you really do stop thinking about it constantly and get on with living.  It's been 6 years since I got my ostomy, and just now I'm noticing that there are times I forget I've got the damn thing, which I've never done before. So if that keeps up life will get pretty much back to normal.......or normal will adjust to me!

regards,

bob


Made me lol and I sure needed that 😂

* Please, do not post contact information, personal information or advertising.
All times are GMT - 5 Hours