Patients Colorectal cancer
Colorectal cancer and stoma: What was your experience like?
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I've just discovered this site. I've had bowel cancer for a number of years and I've been through a few treatments for it. I'm still waiting to hear back from the doctor, but depending on how my latest results are, there is a strong possibility that I may have to go in for another surgery and have a colostomy. When I was first diagnosed I think I knew that it would be a possibility one day, but now I don't feel mentally prepared or know really what to expect.
Can anyone share what their experience was like having it done? How are you dealing with it now? Is there anything I should know? Is it something that is permanent? How do you live with it?
Thank in advance for any replies
@HDSanders Hello HDSanders, thank you for starting this discussion. Have you had your results yet? Let me tag some members who may be able to share their experience with you.
Hello all, I hope you're well. Have you had a temporary or permanent stoma as part of your treatment for bowel cancer? What was your experience like? Do you still have it today? Do you have any advice to share with HDSanders?
@Angiegirl63 @Jonpat @RussellT @Sara1965 @Sharpeshooter @Oaksey @KazzieBazzie @SharonSamuel @Debra.M @Louann @Anne2020 @Paul21 @Pitstop51 @Marktimms @Shazi61 @Sophie13 @doleian33
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Courtney_J, Community Manager, Carenity UK
I have had surgery as I had a tumour, I now have a permanent stoma since January 7th this year and it takes a lot to get used to. The operation is extremely painful and you are really unable to walk or sit for at least 3 months, also you can not lift anything heavier than a kettle for 3 to 5 months
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I had an operation to remove a tumour in my colon in December 2019. I have had a stoma since then. The surgeon has told me that it is unlikely that it can be reversed. It has impacted on every aspect of my life. After six months I’m still struggling with it and the thought of going back to work with it is causing me a lot of anxiety. The thought of having it for life is just not something I want to think about. I look and feel disgusting. That’s where I am right now.
I had an ileostomy bag when my bowel was redirected due to a tumor on my bowel in Jan 2019. I was already used to changing them as I was a HCA in District nursing to be honest I was releaved not to be in pain I was not self conscious of the bag just the noise that it can make and the smell when emptying the contents there are bags that you get to cover when the sun is out or on holiday so you can walk around normally with out people staring or seeing the contents . I recovered well from the operation . I was lucky as once I had chemo I was able to have the tumor removed and my bowel reconnected but there was a possibility that I would have it for life but to honest that did not bother me as this operation saved my life and I would much rather be alive . The main thing is to follow the diet that is advised and follow the instructions that the stoma nurse advise . I hope this helps take care
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How are you today? Have you seen this older discussion? 🙂
I thought I would revive this discussion so we can all share our experiences!
Have you had a temporary or permanent stoma as part of your treatment for bowel cancer? What was your experience like?
Don't hesitate to share in the comments below!
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I had the operation in August last year and was in hospital for 3 days. It’s takes a bit of getting used to but the aroma nurses help and there is a variety of equipment available to support you. You may need to try several different pouches out to find the one that suits you - either one that you dispose of when full or a drainable type. The nurses continue to support you as long as necessary. The equipment suppliers are also very good at making sure you don’t run out and providing free samples for you to try. You are tested every few months to make sure you are clear if cancer. It is a bit rough having to get into your bag emptying/changing routine but once used to it it becomes a natural part of life. Indeed, no worse that going to the toilet and washing hands afterwards.
there are some potential problems but there is plenty of advice and treatments. You can do most things although I have not done public swimming yet or naked sunbathing. Tee shirts cover the colostomy bag ok. It can make noises especially when it farts and usually takes you by surprise so you can’t cough loudly to cover it. A good bag well sealed won’t leak or smell. Belts and supports are available to help you live a normal life. Unfortunately I currently have granulomus and May need another outpatient operation to remove it. But normally you get to the stage of not realising you have a colostomy for the majority of time. I am in my 80’s so they will not be reversing it. Considering the alternative, using a bag is not the end of the world by any means.
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