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.

  • Must be my thunder thighs! I used to have to get up every 2 hours in the night - personal best was 4 but I had to support the bag with 2 hands to the bathroom! - so after 16 months my knees were quite sore! x

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  • Karen reading your bio it’s seems as though you had everything thrown at you. It’s amazing you still have a great sense of humour.
    Thunder thighs. Ha ha 

    Ann
     ‍Art

  • Thanks Karen. I have a holiday home in Cyprus and have been worrying about how I would manage the 5 hour flight. So your friend's New York experience is very encouraging. 

  • Hi Limassol

    I went to the Canaries recently, so almost as long a flight, and to Majorca last September where the flight time was also almost 5 hours due to a diversion.  I even changed my bag in the loo on the plane! I have several trips booked this year including one with 10 hours flight time. Once you’ve done it once, you gain confidence to do it again.


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  • Hi Sarah. You are so brave to go travelling in the time of covid. I'm not sure I would have dared, even without the cancer. You are right, the first time is going to be hard but hopefully if I have the courage to do that things will improve.

  • When my friend went to New York she rang the airline and explained that a seat near the toilets would be helpful. They accommodated this and gave her one of the green assistance required lanyards so she was first on the plane and first off! Not sure if the ‘cheapie’ airlines would do the same but it’s always worth asking.

    Ive just popped this travel certificate on another list but I’ll pop it on here too

    www.respond.co.uk/.../Travel-Certificate-web.pdf

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  • Hi Karen

    I often do the standard package holidays, and get special assistance as I find it hard to do all the walking in the airport. As part of this, I get to choose my seat for no extra charge so request an aisle seat near the loo. Regrettably it means being last off the plane waiting for the assistance people but that’s ok. I also go scheduled, and have been able to pick my seat there too. I always phone in advance to make sure everything’s set up for me, and have found all the airlines extremely helpful. 


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  • Hi Katz51. 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!

  • Hello again Sarah. 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, including yours. I'm booked in for surgery on Monday. Wish me luck!

  • 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. Thank you so much for your input.

    I'm booked in for surgery on Monday. Wish me luck!