My stoma nurse says I change my closed colostomy bag too much. She says 3 time a day.

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I often find I am changing up to 8 times a day not because the bag is full but because my skin sweating causes the adhesive to break down and the leaks begin. This is worse in hot countries and when travelling as I will need to change to make sure I have an empty bag before queing up for aircraft etc. I also need to change before driving any distance as the seat belt position can cause leaks. Is there anyone out there with a similar problem 

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5 Replies

  • Posted

    Good afternoon Richard,

    I have just been told that i may end up with a colostomy for my faecal incontinence as i am now too afraid to leave my home. The more accidents i have in public the more distressed i am becoming. Have some sort of nerve damage to my anal sphinter and suffer from frequent diarrohea, had some awful accidents, last one on a coach trip where the onboard loo was out of order.Got called some terrible names and shouted at for two hours, no one understood my dilemma at all. This incident has upset me so much i gave going anywhere and have not had even a day out in two years. The thought of a colostomy is terrifying me and seeing your dilemma is worrying. Clearly you do get out and about. I have given up work as well because i worked in a bookshop and the loo was out back so i had to close the shop for a couple of minutes. I had to rely on never having customers when having a bad day as i cannot hold on more than a few seconds. The stress became too much. None of the diarrohea treatments work every time. Do you mind if i ask why you have a stoma and how it affects your everyday life. How long have you had it and what problems do you have coping with going anywhere. Have you ever been swimming with it?. Can you get use a belted bag which does not rely on being stuck down? Would be grateful for your comments.

    Thankyou for your time.

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    • Posted

      Hi Susan,

      I had diverticular disease which meant I could not leave the house for having to go to the loo up to 20 times a day. My sigmoid colon was removed and I had a colostomy. This has changed my life, I use closed bags. I have travelled abroad many times, including transatlantic, and lead a near normal life. I need to carry extra bags etc but this is not difficult, I have changed a bag in cars, in plane seats and many other places. I have been swimming and there is no problem in water. I wear a support belt as I developed a hernia around the stoma. You can ( I wish I had) discuss with your surgeon about having mesh around the stoma to prevent hernia.

      I have been retired for 10 years but Had I been at work ( teaching) I could have carried on.

      The bags I use are stuck down which is what they have to be and most of the time they do not leak because I change them before this happens.

      So you do not have to worry about having a stoma as it will give you your normal life back.

      Regards

      Dick

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    • Posted

      Hi Richard,

      Thankyou for the words of support. I find the whole idea just horriffic but i am getting more and more housebound with fear as much as anything else. Having been retired just three years my hubby and i planned to do some travelling and i have not yet left Devon at all. How does a colostomy cope with loose stools most of the time?

      I am delighted that the op has improved your quality of life but i cannot get it out of my mind about having accidents in public places.

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    • Posted

      Hi, we travel a lot, and accidents are extremely rare and minor. I change just before going to a gate for a flight and that will be fine for a few hours. It just need a bit more thinking about. A change can be done in a few seconds. 

      The consistancy of the ouput does vary but does not cause much problem. I did travel back from lisbon with a stomach upset which was much easier with a colostomy bag than it would be normally.

      Public places are quite easy to change in, standing in a corner with my wife passing me things, they probably think we are ageing drug dealers.

      The technology of colostomy bags is very good and they can be delivered to your door when you need them. There is a world out there and remember I have never had an accident in over 3 years that I found embarassing. 

      Regards

      Dick

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    • Posted

      Hello Richard I've just seen your post and it has cheered me up a bit I've got the same as you I had my operation 7 weeks ago and been home 3 weeks and I'm struggling to get used to my bag I'm very depressed and feel like an alian , I can't bring myself to go out for a walk yet not that I feel like it still feel unwell I've got this fear of people going to look at me , this is not my personality at all it's only since I've had this done I feel a different person , please tell me it won't stay like this I dread when I go to someone's house or on holiday also it's been 7 weeks and I'm still very weak and in some pain I did have a 6 hour operation but it's seems to be taking so long to get better . Thanks Jackie x

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