Stoma support information and resources

Hi everyone, it's Megan here from the Online Community team. 

I hope you don't mind me posting, i''m starting this discussion thread as a place where you can access different support resources.

We'll post links to our Community's new blogs and any discussion threads that may be helpful. If you'd like to, you can signpost people to this thread if they're looking for some additional guidance. 

If you have any questions or would like to suggest some ideas for our blog content, you're very welcome to email Community@macmillan.org.uk

Best wishes, 

Megan
Macmillan's Online Community team

  • Hi everyone,

    You may have seen the first volume of the new ‘stoma series’ Community news blog. If not, you can click here or the image below to view this. The first blog of the series aims to provide some reassurance to those who are due to have a stoma or are new to adjusting to stoma life.

     Stoma series, reassurance from the Community written over a picture of the blue sea

    The next blog post will be published next week and it’s sharing some of the useful tips and suggestions that are shared here on the Community. Keep an eye out in the Community News section and we’ll post a link to this soon.


    As always, if you have any questions or would like to suggest some ideas for our blog content, you're very welcome to email Community@macmillan.org.uk

    Best wishes, 

    Megan
    Macmillan's Online Community Team

  • Hi Megan

    Im five and half months with my Ileostomy’ and me and Whoopi are managing really well. She’s a little life saver. 
    I do have a request though. 
    In the early days my stoma changed shape and size I also changed products. So now I have a couple of boxes of spares. Just in case for emergencies but I really don’t need them  

    Is there any way of donating our unused products to others? 

    I understand that there hygiene sterile standards etc but it’s such a waste and I’m sure there’s lots of us the same. 

    Best Wishes

    Artsie Ann 

  • Hi Ann

    There’s a charity called Jacob’s Well, based in Beverley East Yorkshire which donate medical supplies abroad where supplies can be difficult to access. They definitely welcome donations of stoma supplies especially for African countries. 

    It’s very difficult to give stoma products away in the UK, but this charity would be a good place to donate stuff if you are happy with their ethos of donating abroad. If you google it, they tell you how you can make donations to them. 


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  • That’s brilliant SarahH21

    Thank you so much. I tried a little while back but the one I tried was closed due to Covid.

    Jacobs Well is active I can donate to help others that can not afford to buy them. Imagine how terrible that is having a life saving operation and then house bound because you have no pouches. 
    We are so lucky here. 

    Best Wishes

    Artsie Ann 

  • I’ve read so many awful stories of people struggling and using all sorts of unsuitable things, and washing and re using pouches. People from overseas begging for supplies in some groups I was in. I need to put together a box, yes a big box, of all the supplies I don’t use which I was give initially and discovered I was unable to return here. It’s a great chance to help out. You are right about how lucky we are in the UK. 


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  • Yes. I’m sending mine by post.

    I’ve just read some terrible stories, bought me to tears. Too poor to buy their pouches so they’re house bound. So how can they earn a wage?
    No one can use them here. I once  offered  an unopened box back to the stoma nurses. Sadly they said they weren’t allowed. 
    So let’s all have a clear out and help out. 

    Best Wishes

    Artsie Ann 

  • I’m going to do the same Ann. We had planned to go up and drop them off before, but then covid stopped everything. I need to have a root through cupboards. I understand why the nurses don’t accept them back from us, but it seems so wasteful of resources. Being able to donate them to others like this is just ideal.


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  • It good for our landfill as well. I do hate wasting anything especially plastic. Give us a bit more storage space too 

    Best Wishes

    Artsie Ann 

  • My stoma nurse took a bag of assorted trial samples back from me as she was running a couple of training courses for ward nurses and she said that returned samples were good for passing around as the staff liked to be able to handle and examine the pouches.  It saved having to use the "good" stock.

    For the complete boxes that I had that were unused (as I'd changed pouches) the supplier took them back and said that they would go to Africa. Better that they can go to someone in need as they're too expensive to just throw out.

  • That’s really good Blue Blue. My stoma nurses refused to touch my gear. It was like it was contaminated!  
    I have lots of flat pouches that I will never use so I will send them to Jacob Wells. 

    Best Wishes

    Artsie Ann