Long-term effects of colostomy: What to expect?

Hi

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

1- What should I expect after 10, 20, 30 years of having a colostomy? Will my physical condition change as I get older and older, so should I expect any need for extra surgical operations to be vital?

2- For those people who have a permanent stoma... is there any hope they can return to normal life?

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

I'm just wondering

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

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. 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).

Hi Abdulkhadir, I've had my ileostomy for 35 years and my life has been as normal as possible. I worked 40 hours a week until I retired, helped my wife raise our 2 daughters, and have done some traveling by air and car. The last surgery I had was due to Crohn's disease causing scar tissue to close my stoma and some of my small intestine. That was 2 years ago and now life goes on.

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 severely. 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. But 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

30 years and still counting for me with an ileostomy. Unless you have any problems with your colostomy or anything else, then no, you won't 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 that's had a stoma over 40 years....there's no time limit on life. Way, way back in history, doctors would have 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!!!

They are excellent questions, Abulqadir.

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

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

I do not know of any research that says one's lifespan 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.

Hi Abdulqadir, I have had my colostomy 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

I just cannot express how wonderful and supportive people you are... I passed 38 years out of 44 with my stoma... so I think little information is available about such cases... even I never considered I have a problem, I believe that God wants the best for us even if we think it is bad... who knows 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:)

Elkoop99 has had his appliance for 40 years - another contact for you :) K

Hi Kmedup

Thank you for mentioning another ostomate with a longer experience than me... Knowing about these people and reading about their experiences will be supportive to anyone.

Thank you again.

Abdulkhadir,

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

It's 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 furthermore, 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.

Abdulkhadir,

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

It's 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 furthermore, 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.

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 to eat when you can have certain foods or drinks. What underwear works 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, and 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 47 years old, 280 pounds, weak as hell, looking at another surgery, I started going to the gym for a personal trainer. I've replaced 30 pounds of fat with 30 pounds of muscle. 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.

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. It's 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 situations 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 an 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 your 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 an unpredictable 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

I have had my stoma for 8 years. I also have an ileal conduit, so I have 2 bags. I had a major compression in my spine that damaged all my nerves.

I have had 3 refashioned stomas. I had the first one where I was opened up in the middle, a big operation. The next 2 were where they pulled fresh bowel through. I had these extra operations because I get granulomas, little white warts that bleed so much I am anemic. That's why they redid the stoma. I had the last operation in January.

They are coming back again. I saw the consultant last week. The next operation would be to cut up the middle again and make a new site. 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 gave me a nice clean up. They said I keep my stoma so clean.

I am lucky that the company I use to get all my supplies has their 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 hospitals that don't see you once you finish with your consultant.

I am 62. I have had 12 operations since 2008, all major operations, all due to this first compression. 2 of the operations have been on the top part of my back, the others in the same lower back. That was the worst pain ever, worse than my bladder removal.

The point is, I carry on with my life. I am disabled now, all because the first 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.

I have made the most of it. I have mishaps with the bags leaking. 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 unclip my old bag, clean, then clip the new bag on. I have used so many types of bags and base units.

My life has changed so much. I won't say having a stoma or stomas has not made any difference, because it has.

I have had 2 major operations due to hernias, so I have mesh. The others were incisional hernias.

As my belly has swollen and I have put on weight, I wear loose tops. If the tops are tight, you do notice the bag. I got used to the bags. With the wee stoma, I put a night bag on and I never wake up as my wee goes into the bag.

So, there are pluses and minuses. The point is, I have told you all this because I have seen so much pain and suffering and have watched and talked to people who are suffering mentally.

I have seen that there is always someone worse than you. So just live your life to the full. As you get older, you just get so used to doing your bags, it gets easier.

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 anymore. I guess the fact I'm getting older isn't helping!

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

Made me LOL and I sure needed that