Colostomy

The colostomy is painless. Don't worry about life after until you know what the result is.  Whatever happens you will be well looked after and if you need treatment it will get arranged for you. Good luck. 

The stoma will be permanent for me, I have stage 4 advanced. Will be palliative care. Just worried about living with the bag, leaks and problems

Hi Gypsy and welcome to Macmillan and the bowel group.  

I’m so sorry to read about your diagnosis-this must have been a lot to accept for you. I’ve not got bowel cancer myself, but I have 2 stomas and have been living with them for more than 6 years. One is a permanent colostomy.

It can take a bit of time to get into a routine of managing any stoma, but once you do it’s pretty straightforward. Yes, occasionally you might have issues with bags leaking, especially in the early days after surgery while the stoma settles down and you’re healing, but finding the right type of bag to use will be critical for you. The stoma nurses are good at giving advice on what might suit you best as we’re all different. Sometimes you might have to try a few types before you find one you’re comfortable with. 

In the early days you might want to consider getting a waterproof mattress cover in case of leaks. When going out of the house for any length of time, I make sure I carry a bag with a change of clothes and spare stoma supplies just in case. 

Living with my bags doesn’t bother me- I accept them completely and think of it as just going to the loo in a different way to most people. Not everyone with bowel cancer has a stoma so you might want to consider joining the stoma support group to widen the number of members who will see your post. The link is here

Stoma Support Group

If you have any specific questions, I’d be happy to try and help further. The best people to speak to are those who are already living with a stoma. 

Sarah xx

Hi I have a permanent colostomy.  I’ve had it since January (mine was unexpected) .  I’ve had two leaks, both when on chemo and I had the runs.  

I honestly find it no bother at all.  I change my bag once a day, take it off, clean my tum, pop a new bag on and get on with my day.

i hope the op goes well!

cerysm

Sorry  my mistake I thought you meant colonoscopy. So sorry to hear what is happening.  I am sure you will be fine and looked after.

Hi Sarah. Thank you so much for reaching out and all the advice. I am really struggling at the moment. The stoma im told is necessary to prevent a blockage. The tumour on my colon is 6cm and obstrucing. But I only have 6 to 12 months which is really difficult to deal with right now. Hard to know if I'm making the right choices. I hope you are doing ok now, you have helped. Thank you️

Thank you so much for that. It's very reassuring to know how you deal with it. Made me feel a lot better. Hope you are doing ok now x

Hi Gypsy

I honestly can’t begin to imagine how difficult this must be for you. If I hadn’t had my surgery, I would have been on palliative care, so I went for it, and was very lucky given that my odds of survival were not good. 

Your decision must be so hard to make..but for me it was the chance for more time and that was so important to me. If the stoma can prevent a blockage, then that could be worth it for you, and make things easier.

I hope you are getting enough help and support to come to terms with what you are facing, and send you strength and peace with whatever decision you make.  

Sarah xx

Hi Sarah. Thankyou so much for your kind words, means a lot. Im glad the surgery worked out for you.  Such difficult choices to make x