TPE surgery update

  • 4 replies
  • 88 subscribers

My husband had his surgery on the 30th April, which went very well (thank you to the multi disciplinary teams involved) and is home. It’s a painful, stressful and will be a long recovery. He has lost approximately four stone in weight but today, I feel he has turned a corner in that he has eaten porridge and soup. 
There is so much I want to know to make this easier. I have a heightened sense of smell and have ordered a Tommee Tippee twist nappy wrapper today to contain the bagged waste.  Please share your tips - what storage units do you use in the bathroom to store all the bags etc? Man bag for medical goods for when we can go out again (long time off, I know). I’ve bought the double pouched underpants and swim shorts. Any other good clothing tips. 
This is a difficult journey and it’s not easy for either of us. 

  • Hi  

    My mum did not have this surgery so can’t help but she has a small bathroom with mobility issues . I have just stollen your idea and ordered a nappy disposal system . I don’t know why I did not think of it . I have been getting biodegradable bags but she still double bags everything and I could hardly get her bins down to the road . So I just want to thank you for this brilliant idea . 
    I managed to find a slimline system on wheels on Amazon that stores her pads ( for her ) and bags etc . It slips between the bath and wash hand basin .

    However she does not have a stoma so we are not dealing with that type of changing facility.

    I wrapped a cupboard around her wash hand basin but that’s the best I can do . I store everything else in a unit in the bedroom .

    It does feel like a nurses storeroom at times . I work hard to make it more like home .

    Take care ,


    Community Champion Badge

    Helpline Number 0808 808 0000

  • Hi  and it’s good to hear that your hubby is starting to regain his appetite - it’s a big op so baby steps in the right direction is a good sign. I had an Ileostomy which was later reversed so I just kept everything in a carrier bag in the bathroom cupboard that was already there. I suppose it depends on the size of your bathroom as to whether you have room for a free standing unit or keep the main supply of bags elsewhere and have a wall mounted cabinet to keep a small quantity in with all the sprays and wipes etc?

    Out and about will depend on his preference for a man bag - could be across the body bag or a small rucksack? Has he got a key for disabled toilets? 
    You might also like to copy and paste this post onto the stoma board where I’m sure they’ll be others with great tips?

     Ileostomy, colostomy and stoma support 

    If you are in the UK or ROI but not Scotland (sorry Scotland) then you can get some stoma underwear on the NHS from Vanilla Blush - I’ve attached a link below

    Clothingwise I just wore normal clothes but make sure there is nothing tight across the stoma as it could restrict the output and cause a leak. 

    Hope this helps but I’m sure they’ll be lots of top tips on the stoma page

    Take care

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Thank you for your reply and ideas - I’m going to search Amazon for a unit to store the products. If I have any more bright ideas, I’ll post to share. 

  • Thank you Karen for replying and for the ideas. Yes, he does have a key.  I