Hi Alex,

While I certainly sympathise, realising that you're one of many who feel this way, I'm unable to empathise.

I've got a different cancer, multiple myeloma, but I got sepsis and had to have my sigmoid colon removed. Ended up with a colostomy and a mucous fistula, two bags. I've had it redone twice due to it closing over and am about to undergo a major op to have a stricture removed and my stoma redone yet again and maybe changed to an ileostomy.

Due to a lifetime of bowel problems a stoma was always a possibility. You'll probably hate me for saying this but I've never had a problem mentally/emotionally and I'm unable to fathom why people do. I could actually change my bags in a roomful of people and it wouldn't bother me in the slightest. In fact, I've offered to do just that if my stoma nurse thought that somebody might benefit from it.

What I can say is that disgust is learned behaviour and that learned behaviour can be changed. Would you, for example find changing a baby's nappy offensive, or just something that nedded doing for the wellbeing of the baby?

I think the most important thing, practically, is to remain calm. Lay out all your cleaning stuff and supplies where you have easy access. Go through the process calmly and methodically and laugh at any mishaps. I'll tell you how I do it.

Personally, I remove all clothing. Not a necessity but easy to do at home and removes the possibility of soiled clothes. (I live in my dressing gown anyway)

I sit in front of my toilet on my wheelie walker thingie.On the cistern is my removal spray and about 10 individual bits of toilet paper.

The disposal bag is open, on a unit to my left. On my right is my shower chair with the rest of my accoutrements - Cotton pads for washing, vitamin infused cleansing wipes, dry wipes and bags already cut and with deodorising lubricant inserted. The toilet seat is up and a small adjustable mirror is placed on the rim of the bowl, facing me. The fan's on, the window is open and the light is on.

Using the adhesive removal spray, I remove both bags and put into the disposal bag to my left. I use a couple of sheets of toilet paper from the cistern to remove the majority of output from my stomas and their surrounds, these are flushed. My sink is to the right of the toilet, with the hot water running. Using the cotton pads and hot water only, I clean the area. 

Occasionally, one of the stomas will decide to start working during the process. Because I'm sitting over the toilet, there's no problem. This is one of the points where someone might start flapping and why calmness is key. I simply wait for the output to stop and redo the steps of the cleaning process.

Once cleaned I wipe the whole area with a cleansing wipe. For me this is not designed to be a part of cleaning but to protect my skin, as barrier wipes or sprays caused a reaction. I then use dry wipes to dry the area by dabbing while blowing on the area. And the area needs to be completely dry in order for the bag wafers to stick properly. A properly dry skin is smooth to the finger.

Bags are applied and held in place while sitting still, for about a minute. Hand heat helps to activate the adhesive.

All the pads and wipes are placed in the disposal bag as I finish using each one, they're never flushed. The mirror, the toilet seat and the toilet bowl rim are wiped with anti-bacterial wipes, which are also kept on the toilet cistern and put into the disposal bag. Next I tie the disposal bag and hang it on the handle of my walker, so I don't forget it.

I now thoroughly wash my hands using anti-bacterial liquid soap.

I'm clean and the toilet's clean.

It's really just an alternative way of using the toilet.

When something causes you to be embarassed or similar, be open and upfront about it. Talk about it, be loud about it. Laugh about it. When you do that you draw the sting and nothing anybody can say affects you, because you've got in there first and stolen the thunder. I told somebody all about my bags today, just because we got in a lift at the hospital together and she started talking and asking questions. Both laughing while trying to top trump each other about our ailments. I often indroduce myself by saying, 'Hello, I'm Taff, I'm a man with three bottoms'.

I hope you find you can come to terms with your situation fairly soon and meanwhile, kudos to your husband. He obviously loves you no less.

Best Regards

Taff

Hi I am very interested in speaking to you.About your multiple myeloma and surgery my sister has multiple myeloma and has just been diagnosed with bowel cancer and needs major surgery.thank you Hope

Hi Hopej,

I'm more than happy to answer any questions you may have. I don't do private messaging though, so it will have to be on the open forum, giving others the chance to benefit.

Best Regards

Taff

Hi Hopej,

I'm more than happy to answer any questions you may have. I don't do private messaging though, so it will have to be on the open forum, giving others the chance to benefit.

Best Regards

Taff