Alternative to stoma

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Hi all,

I am about to begin chemoradiotherapy stage of treatment after rectal tumour found. Maybe I’m getting ahead of myself but the thing that terrifies me the most with all of this is the idea of a stoma bag. I know myself and my mind and what I can tolerate and lI’ve with, and that is one thing I know I will not be able to handle (even a temporary one)

I am wondering what options there are (have done a little googling but would like real life experiences)

thanks for reading, what a thing this is to go through for all of us

Much love

  • Hi Tom

    I think it all depends where your tumour is. If it is rectal youre more likely to need a stoma and expecially if its low down. 
    Have they told you where your tumour is? In our case they told us that unless chemo and radiatiation got rid of every last bit or cancer, a stoma bag was inevitable. 
     
    Take care 

  • Yes low down, they told me I’ll need a temporary one but I will do anything possible to avoid it. 

  • Hi  There’s a lot of ‘ifs’ early on in your treatment.
    You could have a complete response to the chemoradiotherapy ie. it gets blasted into oblivion and no surgery is then required. 

    The tumour is shrunk to an extent that the surgeon is able to rejoin the bowel without the need for a stoma

    There is an option for Papillon treatment - see link below

    https://www.clatterbridgecc.nhs.uk/professionals/education-and-training/papillon#:~:text=The%20Papillon%20technique%20is%20a,or%20keen%20on%20extirpative%20surgery.

    I remember a lady on the bowel cancer uk board a few years ago who was adamant that she wouldn’t have a stoma and was even considering refusing treatment. She eventually had a stoma and chose to keep it rather than having a reversal as she got on so well with it.

    Can you tell us what your concerns are and we can maybe help? Its used to allow the bowel rejoin time to heal after surgery but you quickly get used to it and carry on with life as before

    Take care

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • I know I will find a stoma degrading and debilitating. I’m sure you’ll tell me there are plenty of people who are fine living with them but there are an equal number who find them utterly depressing and take over there entire wellbeing 

  • I don’t believe there are an equal number who think as you do from my own experience of living with 2 stomas for over 4 years and all the people I speak to in general running my own support group, and there are a lot!

    I appreciate that people have different views of course, but when something saves your life as mine did I was happy to take that option. I hope you are not faced with that when you feel the way you do.

    Sarah xx


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    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Yes you’re right - there are plenty of people who are fine living with them - I had a temporary one after my surgery and I have a couple of friends who have permanent ones.

    People can struggle a bit in the early days but I can’t remember ever reading a post where someone has said that it’s ruined their life - most people see it as a necessary stage of their recovery and get on with it.

    Why do you consider it degrading? What do you think will be debilitating about it? Why do you think you will not be able to carry on with a normal life?

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • It will make me utterly depressed 

    hence my post is what alternatives there are, if anyone has experience or knowledge of which direction to point me in

  •   The only options that I’m aware of are the ones in my earlier post. If your surgeon is still insisting on a stoma after your chemoradiotherapy then you could maybe ask to be referred to another surgeon or ask what the consequences would be after having a resection without a stoma?

    Sorry I can’t help further

    Take care

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Hello Tom B,

    I have two stomas - imagine that! Being neither degraded nor debilitated I can quite understand your stance on the subject but much depends on the state of your health and what the surgeon finds once he starts digging around in your vitals. I am not aware of an alternative unless your pipework can be re-connected once the alien has been removed. Others might describe the immediate effects of that.

    Prior to chemoradiotherapy the oncologist recommended I have a temporary loop ileostomy to manage scary diarrhoea. I had no idea what an ileostomy was and never looked it up, I just followed his recommendation and was glad of it. The stoma nurse sorted me out with a short course in stoma management and home I went. I had a 13cm tumour 'low down' which the surgeon completely removed in a 6 1/2 hour operation. I woke to find a second stoma had been formed but couldn't care less as I was alive and on the road to recovery.

    If someone had told me all this before treatment started my view would have been more like yours, but I ain't the beauty of the world and remain happy to enjoy a life only slightly different from what it was before. Being more rugby player than jockey looser fitting clothes are a bonus (and I never have to run for the lavatory like film stars might have to from time to time).

    Please don't get too hung up on the subject: in the big picture it's no hardship and you might be surprised at how many people have a stoma for various reasons but don't shout about it.

    Dulac