Stoma bags

Hi, great to hear that you are ned. I am 7 weeks out from treatment. I've never had any issues with going to the toilet but it's sounds horrendous what you are going through. Because I was stage 4 with cancer in my anus vagine and lymph nodes I was given a temp colostomy prior to starting treatment. I read alot of horror stories with leakages etc however I've had no such issues. If mine becomes permanent then so be it. You need to be able to enjoy your life and be able to go out without any worries. Please let me know if you have any questions about a colostomy, I'm happy to help. Lori 

Hi Crafty Jo

inwas diagnosis with advanced stage 4 N1 anal cancer last November 21, by December I was told I had to have a colostomy, as my tumour was stopping me from going to the toilet, iv always had issues with my bowels struggling to go due to server constipation, anyway they also said it would really help while going through treatment.

I really didn’t want the colostomy just the thought terrified me but I didn’t really have a choice, once I had it done, I was so emotional, I didn’t want to look at it, I was frightened to touch it and clean it, I was told I won’t go home until I’d learnt to look after it, so I grim and beared it and got on with it within 2 days I’d got the hang of cleaning it and I went home, I had such good support from my husband who helped me change it, 2 days later he went off to work and I had to deal with it on my own and I did, I never thought I’d say it but it was the best thing iv had done and although it is reversible I was told if cancer is still there I would have it for life, which I’m not keen on but iv had no problems with it I have found it easier than struggling to go a toilet prev cancer, and it saves my life no I’ll have no problems in keeping it infact I now worried that if I have it reversed will I go back to struggling bro go a toilet. The only thing with having the colostomy is I have a lot of mucus which I have to try and release when going a wee, and I get a bit of mucus from the stoma but absolutely nothing to worry about.

I have to take a still sofner as the colostomy still works in the same way, so still get constipated, it depends on your output as to how many times a day you change it I could change it 4 times a day or 1 just depends,  a colostomy is much better than an Ileostomy, by the sound of your situation you would have a much better life having one, you will get your life for sure. 
I’m 54 and I have named my colostomy, she’s called dirty Girty and she makes me laugh with her sounds. 
Please ask away if you have any more questions x x x

ps sorry for essay x

Sorry Laura I clicked to react on your comment and have clicked report by mistake  . There wasnt an option to unclick. So if you get a report it was me, sorry x

Thanks Lori that’s really reassuring x

i had one before treatment and really glad i did because everything was erratic,often very loose..i havent had any leaking in 10 month no rashes or soreness. it takes a few minutes to change it.i carried on as normal all through treatment, going out, shopping etc. i have a hernia in mine...caused by a cold first week of treatment and sneezed constantly. i went back to consultant ro see about having it fixed but he says they cant fix it but can reverse it. i'm convinced he can fix it, he's really good. i've just got the all clear so next appointment we're going to figure out what to do, i'm still pushing to keep it.i would definitely recommend having it..another point, whats the point of going throigh all that treatment to save your life if you're not going to have a life x

Hi CraftyJo (Crafty Jo),

Firstly welcome to the Macmillan online community. Secondly it’s great to hear that you’re NED, that’s the best news. 

Although I don’t personally have a stoma & am lucky enough to have returned to 90% normal bowel function I do really sympathise will how you’re feeling. My lovely oncologist knew I volunteered here on the site & I had a discussion with him at one of my appointments about long-term bowel issues following chemoradiotherapy & he told me pretty much the same advice as you’ve had, he said that although many view a stoma as a super scary prospect that in certain situations it’s the key to getting your life back. 

I hope the replies here from our lovely members help to ease your concerns a little. 

Nicola 

Haha don’t worry it happened to me the other week