Absolutely terrified

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I had a lymph node in my pelvis removed three weeks ago. I told the doctor not to remove my bowel unless absolutely necessary as I'm scared of dealing with a stoma. 

My melanoma cancer is on my vagina and growing and as I'm seeing my consultant next week, I want to be prepared to discuss the bowel removal again. What is it really like living with a stoma? 

The whole issue is just appalling to me and I can't decide if I could live with a stoma and all it entails. 

Is it worth yet? This is my third time dealing with melanoma, first on my vulva, recurrence meant a radical vulvectomy and now this.

  • Hi Sarah.

    Same here. Having read some people's stories about their problems after having a reversal, I think I'm fine as I am. Why go through more surgery and recovery and take more time off work.

    Kim x

    Blackstuff
  • I absolutely wouldn’t want any more surgery I have to say. But we are living quite happily as we are so I’m fine staying as I am! 

    Sarah xx


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  • Can you empty yours Sarah   I am being a little personal hope you don’t mind. I am just  interested  

    Ann
     ‍Art

  • Yes Blackstuff. I was told two months then six now a year. When my nurse asked if I’d like it pushed through and it was possible for me to have my reversal early because of my circumstances. I thought for a second and said No thank you. I want a summer, travel and some fun. Mine will not be straight forward and I want a break. I am not in a rush 

    Ann
     ‍Art

  • Hi Ann. 

    You deserve to have a summer and travel after what you have been through with illness, surgery and Covid. A reversal can wait until some enjoyment of life has been had!! 

    Kim x

    Blackstuff
  • I don’t mind you asking at all Ann. I have moved to closed bags just recently which I really like, so I don’t empty. For the past nearly 2 years I have used drainable bags and if I had an upset tum I might very occasionally empty, but in general I didn’t. I have enough to do with 2 stomas Joy

    Sarah xx


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  • hi Beniceam, it does sound scary and I never thought I'd be able to cope with a permanent colonostomy - that was in 2011. You do adjust and it becomes your new normal.  Living with a stoma gets easier as time passes. 

    Kath
    "don't think about tomorrow"

  • Hi Sarah 

    I'm interested in what you say about an upset tum. I have fairly loose bowels and poop at least twice a day and sometimes more often. Do you just remove a closed bag when full and is that several times a day with an upset tum?

  • Hi Beniciam

    I very rarely have an upset tum-I could count it on one hand over the last year but I had eaten something which clearly disagreed with me as I was also sick. This gave me diarrhoeas, hence the bag filling quickly. For me that was very unusual,

    Colostomy output is quite thick and I would normally change my bag once a day. I don’t wait for it to become full as I don’t like that feeling. Some days I it might be completely empty-I don’t always have poo every day. 

    Sarah xx


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  • Dear Beniciam I had a Stoma operation 6 weeks ago and I have found its okay and its given  me a better quality of life for the time I have left.
    Over thinking things causes miore stress in people than the circumsatnces themselves. If need one go for it and you will soon be okay with the differnce it makes.