Learning to love my stoma

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Hi, I now have a permanent stoma due to bowel cancer,  still finding it time consuming and painful,  it's a dragging pain just left of stoma, anyone got any ideas please 

  • Hi  

    I’m sorry to read you’re in pain. How long have you had your stoma? Is it a colostomy or ileostomy? Just so you can connect with others who have the same type of stoma, and it’s helpful to know if your surgery has been very recent and you’re in that period where everything is still settling down. I have a permanent colostomy and urostomy but haven’t experienced the pain you’re describing, so if I were you I’d probably get in touch with my CNS to check if they think you should be seen by your consultant again.

    Sarah xx


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  • Colostomy,  4 weeks  on Wednesday,  stoma nurse due to visit soon. Think my measurements aren't  very good, I am  blind in one eye so find it awkward,  have ordered  a support belt to see if it will help, chemotherapy  starts soon   hope it improves soon as its stopping me exercising as much as I want

  • I'm assuming you are using the word 'measurements' with regard to cutting a pouch to fit your particular stoma.

    After much trial and error I came up with this method

    1) When changing your pouch and the stoma and surrounding area is clean, take a photo with smart phone camera with lens at same level as stoma.

    2) Measure actual stoma at widest point on horizontal axis using ruler or tape measure keeping it a few millimetres away from stoma surface.

    3) Place phone on stable surface, pinch and zoom photo until widest point of stoma on screen is 3-4 mm wider than actual measurement.

    4) Place thin writing paper on screen, tape one side of paper to stable surface.

    5) Using fine tip felt pen make dots every 3-4 millimeters around stoma outline. Cut out with scissors 

    6) Do this 3 times in case you make a mistake cutting out the first one.

    7) Place template over stoma, trim if necessary. Place template on pouch, draw round with felt tip.

    8) Keep safe for subsequent use

    I hope all that makes sense, it's 'fiddly' but with luck and persistence you will get a much more accurate template, which makes cleaning prior to fitting new pouch much quicker., you won't need flange extenders, and only need to change pouch every other day, which my stoma nurse said was acceptable.

    Good luck, I'm now 3 months on from my operation and feel a lot better then I did after just one month.

  • If you ask the stoma nurse to measure, you will get the measurement you need, and once your stoma settles down and is a fixed size you can order your bags to be pre cut to the correct size for your deliveries. This is very simple and accurate.

    Sarah xx


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  • I've just realised that  I have an ileostomy so my method doesn't apply

  • It sounds extremely complicated Alec! I can’t imagine having to do that every time I wanted a bag. The original poster has said she is blind in one eye, so I don’t think it would be easy for her to use your method. I don’t think it makes a difference having an ileostomy rather than a colostomy, but it all sounds unnecessarily complex when the simplest solution ultimately is to have pre cut bags.

    Sarah xx


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  • Thank you so much, I will try this today, knowing there are kind people prepared to help makes a big difference,  thanks

  • Good idea Alec78 and I will try it. I have two stomas: one is circular and is easy to measure and cut to shape and the other is more pear-shape and the standard template issued by the pouch manufacturer doesn't apply in this case. The hole has to be oversized and exposes a margin of skin, which I prefer to avoid. The trick is to make a hard template from something more durable and moisture resistant than paper, so I will try a clear piece of a soft drinks bottle first. I'm not sure that pre-cut pouches cater for odd shapes, but if they do then they would need a personal template anyway!

    Dulac

  • All my stoma bags now come pre-cut from a template achieved by method described.  

  • Pre-cut pouches will be cut from whatever template you supply them with