Permanent v temporary stoma

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Hi Everyone

I am new to this forum. I was diagnosed with colorectal cancer in May 2021 and have been through 5 weeks of radiotherapy followed by 18 weeks (6 cycles) of chemotherapy and am now waiting for surgery. I had my pre-operative assessment yesterday so I expect to be operated on quite soon.

I saw the surgeon yesterday he said I had to choice between a colostomy and an ileostomy. I don't have to decide until the day before the operation. Today I had a call from a specialist stoma nurse who gave me a lot of information about the difference between a permanent and a temporary stoma. But what would really help me is some input from someone who has had either of these procedures and can tell me a bit about what it is really like living with a stoma bag. What difference does it make to your quality of life?

I am a 72 year old woman, living alone and with no close family who before cancer was fit and active and before covid was really enjoying my retirement - taking 2 or 3 holidays abroad each year as well as visiting my flat in Cyprus twice a year. I would really like to get my old life back so a big factor in my decision is going to be how much either a colostomy or an ileostomy is going to impact on my ability to do that.

Any help or advice - positive or negative - would be gratefully received.

  • Thanks for this. It will come in useful when I finally get up the nerve to go travelling.

    I decided to go for the permanent colostomy. At 72, I didn't want to face another operation in a couple of years time but I was also encouraged by other people's experiences. I'm booked in for surgery on Monday. Wish me luck!

  • Good luck Limassol

    its great to hear that you’ve made your decision and you’re booked in. I hope all goes well. Please keep us updated when you’re feeling up to it. 

    Ann
     ‍Art

  • Hello again. Just to let you know  I decided to go for the permanent colostomy. At 72, I didn't want to face another operation in a couple of years time but I was also encouraged by other people's experiences on this forum.

    Thanks again for your input. I'm booked in for surgery on Monday. Wish me luck!

  • Hi.wishing you all the best.do let us know how it goes

    Kath

  • Hi Limassol

    Sending all best wishes for your surgery on Monday and hope that you will be able to resume your travelling in time. Take care and look after yourself. 


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  • Hi Limassol, how did the operation go?

  • Hi. Thanks for asking. I thought I had replied individually to everyone who had been in touch after my earlier post. I'm sorry if I missed you out.

    The operation went well but I was very glad that I had booked to go straight into a nursing home from hospital as it left me totally exhausted and very bloated from all the gas they pumped into me. Going home eventually after 2 weeks there was a real challenge (I live alone).

    I really struggled with the stoma bag. The stoma nurses were very helpful and sympathetic but we had to try about 4 different types of bag and deal with a nasty rash before I found one I was comfortable with. Eight weeks after the operation and I have still not really come to terms with the bag but my energy levels are a lot better than they were.

  • Dear Limassol , thank you so much for answering so quickly. I only read the conversation yesterday as I am about to have a loop ileostomy and my loop colostomy reversed. Don't worry, it took me a very long time to get used to the bags. Like you I had to try a few as I have a hernia underneath! I have had the colostomy a year ago, the stoma nurses are wonderful when you have an issue. And I find groups like this one very helpful. I am here if you need to talk! Don't let the stoma overtake your life, we eventually get into a routine then things don't seem so bad... Give it time, it's been only eight weeks, still so recent!

    Take care,

    Bri.

  • PS I live in Surrey.

    B

  • Thanks for the encouragement. Good luck with your reversal. I hope all goes well.