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 Alex, 

I am 40 and was diagnosed with bowel cancer in May this year.  I am still undergoing treatment to try and reduce the tumour so that they can operate. Like you, I was uncertain of how I would cope with a Stoma and one of the first things I thought was that hopefully I would not need a permanent stoma.  I believed at that time I would get a Stoma when the tumour was removed, however, the first MDT recommended that I have a colostomy to rest the bowel and avoid a total obstruction before I started chemo and radiotherapy.  I initially found this recommendation upsetting but after having the colostomy operation, I have found it easy to manage and in all honesty although I hope eventually I will get the Stoma reversed, I am comfortable living with it.  I have to have the colostomy reversed and an iliostomy put in place when I have surgery to remove my tumour to allow the bowel to heal. It is scary to start with but it doesn’t take long to get used to and some humour helps!  My husband definitely wouldn’t go near it lol. It doesn’t hold you back from any normal activities, just a bit more planning sometimes.  We are going on holiday to Florida next week and I was a bit anxious about the Stoma for travelling and  swimming/sunbathing but just delighted that we are able to have the holiday we booked last year and looking forward to it.  I hope that you feel a bit more positive about things as it settles down.  It just takes some time to get used to.

Lesley

x

Hey Taff, thank you so much for you’re honest and great advise. I have read your reply a few times and appreciate the time you’ve taken to share your knowledge and experience with me. I really hope I will become as confident with time.   I do admire your strength and you’ve got me thinking (in a good way). Best of luck for the future. 

Many thanks

Alex 

Thank you Lesley for your reply! It really has given me some relief to know there are others out there coping with it.  Hopefully with time I will start to feel more positive and confident. Enjoy your holiday! 

Many thanks

Alex

Glad I could be of some help. It might also be worth remembering that you're not alone in your way of thinking, from reading various stoma forums over time, it's clear that, at least in the early stages, many people think as you and I'm the odd one out here.

Most people seem to come to terms given time and practise, albeit that there's an occasional person who never does. Rare though I think.

As I said earlier, the single most important thing is calmness. and then an acceptance that **** happens.

Actually that's another option worth trying, don't shy away from the words. Personally, I can't be doing with using the word 'poo', it's like talking like a six-year-old. Try saying to your husband, 'I've just got to get used to dealing with ****' and see how freeing it is.

My use of the word here is to show you respect by treating you like an adult. It's an adult word, used by the majority of adults and the only reason I've misspelled it is so I can use it without getting it starred out.

Anyway, I'm burblin' now.

All the best

Really sorry yr having problems with yr stoma.I'm 46 and got diagnosed with anal cancer after 6 months of going  to the doctors being put on antibiotics as I was constantly told I had a cysts  just inside my vigana finally sent for scans but only when I broke down in the doctors surgery telling the nurse in can not carry on wit has the mess by that I mean feases coming through my vigana I was in such a state, then the bad news it's terminal cancer it had spread with in 5 days of that news I had the stoma bag I feel I had to cope as it was part of me now like yourself i didn't want to look at it I didn't want to believe it everything changes yr life changes but the worries don't,simple things worry me going out to eat is the bag going to start working while I'm out what clothes to wear to hide it,is there toilet facilities and it just goes on but don't be put off it only gets better but like everything it takes time,everytime I change it just remind yourself it's saving your life hope this has helped you a little take care X 

I am sorry you feel this way. After a stick test 5 years ago for bleeding, I was fast-tracked to a London Hospital. Following a colonoscopy I was instantly told I had a rectal tumour and there was only one operation and it would be to remove the anus, this would mean my anus/rectum being removed and stitched up without the chance of a reversal and I would have a stoma for life. Of course I was very upset and after many trials and tribulations I have had to come to terms with my stoma, my choice was taken away from me. The bowel does settle down and you do become adjusted to it, there could be a lot worse things you could have. I admire young girls who have shown their stomas off to the public.

You maybe one of the people who can have a reversal, but there are many many people who cannot, like me, but that doesn’t mean we don’t lead normal lives. People are really shocked when I tell them I have a stoma, as they have never noticed it, I wear dresses, trousers, leggings, swimsuits and it really isn’t much of an issue.

i hope you can face up to the reality that it could be a lot worse.

Hi Lesley,

I’m new to this site and due to have my op to fit a Stoma in a few weeks time, I’m pretty nervous about it all but it has to be done.  You mentioned about a long haul holiday; we have booked to go long haul in November this year, that only gives me a few months to get used to the stoma etc before we travel.  Do you think I will be ok to travel so soon after the op? 

Hi STB, I just joined too and think this is an older thread, but like you I am waiting for the same op, not easy the waiting is it? 

Like you, we have a long haul holiday booked and I am unsure what to do about it, let's hop someone comes along and advises us. 

If you need to chat, I am sure there will be a facility to pm on here and as we are in the same boat, so to speak, always have a willing ear. 

All the best with your op!