Hello.

If you go on the stoma site on here you will see loads of people carry on as normal with a stoma.do click on peoples names to see how they got on.

All the best

Kath

https://community.macmillan.org.uk/cancer_experiences/ileostomy-and-colostomy-discussions-forum
Here is the link for the stoma group .

Court 

https://community.macmillan.org.uk/cancer-blogs/b/community_news/posts/kath-s-story-living-with-a-stoma-and-building-confidence

You also might find this an insightful read .

Lots of people feel that way at this stage in the process and you are only human dealing with a life altering surgery . However many people here are great at showing how to live life with a stoma .

My friends son has one for a different reason and does everything my boys do including jumping off harbour walls . Nothing has stopped him but he has had time to adapt .

Take care ,

Court 

Hello JBJ - I think you may be able to tell from my 'handle' that I'm not averse to a bit of gallows humour myself.  I hope it turns out that you don't need a stoma pouch. I'd always dreaded it, but I was surprised at how little it affects me.  I am lucky in that the stoma itself is low on my belly and to the left so the pouch fits below my waistband and if it's noticeable at all it looks as though I've something in my pocket (not Mae West style I hasten to add).  We all worry about leakage and it does happen - but not (so far, after a year) catastrophically.  The nature of the pouch, which is stuck to the body by its built-in self-adhesive plate, means that a leak is between the belly and the bag of the pouch, and YOU would realise that something was wrong - nobody else.  You would have a dolly-bag of bits and pieces which you'd keep nearby - under you restaurant chair, on a coat-hook in a house when you're visiting, and so on.

You will have MacMillan support whatever, and if you have a stoma you will have a MacMillan stoma nurse who will be in regulat touch and easily accessable to advise and reassure you.

You mentioned your independence.  I'm much older than you so weaker with age.  I also have several flavours of cancer.  But I was shown how to change the stoma pouch before being discharged from hospital and have not, so far, needed my wife to help me.

As we're talking worst case for you that's probably enough for now - hope this helps and do reply if you'd need more info from 'a user'.

Hope all goes as well as it can for you.    

Hello again JBJ - I've just thought of something to reassure you, though we all vary.  So far the only time I've had to change the pouch outside of home is when we stayed in an hotel last year.  I always carry spares and disposal bags in my dolly bag, though.

Hi Bagpuss.I wonder if it depends on where you live  as in 2 1/2 yrs I have never met or talked to a macmillan stoma nurse.there is a stoma nurse attached to my stoma supply suppliers tho.just wondering.

Kath

Hello Katz.  I live in north Surrey.  It would be interesting to find out how this works.  I am a terminal case, which may make a difference to what is offered automatically?  I just assumed it was a regular care package from Macmillan - after all those years of saying 'never assume'!

Hi Kath, thanks for the reply. I’ve been looking at the website & have found it helpful.

I know it’s a stupid thing to worry about, my focus should be on getting this cancer out of me but it’s been funny the things that have been running through my mind.

Thanks again.

Hi Court, thanks for the link, found it very useful. I’m new to this, only found for sure last Friday so there’s a lot of information I’m trying to absorb, probably too much at once to be honest.

Thanks again.