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Beating Bowel Cancer Community

Life with bowel cancer

robbiedoo62

Does anyone else fear leaving the house after stoma surgery? Am terrified of a ‘ leak or smell ‘ in public 😪

Hi, I’m very newly diagnosed- 3 rd November ‘17 and surgery was 21 st November - so today I’m 14 days post op- walking around quite well now, but my biggest problem is psychological- I’m feeling absolutely ILL about having an accident with my ileostomy bag when out - noise, leak, smell😔
Has anyone had any of these scenarios happen to them, and is so WHAT DID YOU DO?
Racked with fear🤢

Lizalou

Hi @robbiedoo62

I lived with my ileostomy for 14 months before reversal so I understand exactly what you are going through. But a few days after my op, after I had turned into a snivelling wreck in front of the visiting district nurse, she pointed out that either I could take control of my stoma or I could allow it to control me. That afternoon I put on some proper clothes and got my husband to drive me out for coffee and cake. I never looked back, although I had some near misses, so here are some tips....
Small emergency bag (bag, wipes etc)
Firm control pants (to contain everything)
Dark coloured trousers/dress (worse case scenario)
Check where the loos are as a priority

I may have had to rush to the loo occasionally but never ever had a complete disaster. And the smell/ noise won't be obvious to anyone else, I promise.

So, get your partner or best friend to encourage you and off you go! Good luck, let us know how you get on. :x:

Baxter2

Hi @robbiedoo62 and a very warm welcome to the forum! I see you’re in sunny Australia 🌞

I’m so glad you’ve already had surgery and are now on the road to recovery! Well done you!

I don’t have personal experience of a stoma but just wanted to say hello. I’m sure you’ll hear from lots of lovely forum users who will be able to reassure you and share their experiences as @Lizalou has already done.

Sending you all my very best wishes,

K 💚💛💙💜❤️

springer michelle

Let your stoma be your friend and try not to worry about it, always take supplies out , once you get into a routine it becomes part of every day to you. :x::x:

michael

Hi, I had an ileosotomy and now have a permanent colostomy.

It has never leaked or smelt - and I drive a quad bike and tractor. I go everywhere with confidence and don't even think about it.

I'm off to Edinburgh airport now to pick up a friend and shall certainly not wait in the car.

Go for it - and our cricketers too!

Michael
:x::x::x::x:

Lady GT

Hello and welcome @robbiedoo62 .
It really is very early days for you but your post rings a bell with me. Lord GT was exactly the same to start with and we lived a VERY restricted life for a long time. He just didn't have the confidence to go out much, especially for a meal.
Fast forward 20 months and there's little he won't do now, although certain times of day suit him better.
Be patient while your new stoma 'beds in' and then you'll probably find there is some kind of pattern to how it behaves and this will allow you to take a few, tentative, steps out at what you know will be a quiet time.
It kind of goes from there and your confidence gradually builds.
Of course, everybody is different but it really isn't unusual to be frightened to start with.

Once you do want to venture out, you've had some good advice above.
Don't worry, you won't be housebound forever.
:x:

Bridget55

Hi @robbiedoo62 .. welcome from cold Uk to sunny Qld. It is an adjustment at first but you will get used to it. I used to pack a bag to take in the car and a small bag with me when out walking. Not had any mishaps. There is a really good cook book done in Sweden for optimal food for people with stomas. A friend used to make me dishes from it on meals on wheels basis. It will become your friend and you will get used to the routine. :x:

Bridget55

Here is the link. Apol as it's about whacky www.ilco.nu. Happy reading. Where are you in Queensland. My uncle and family are in Millaa Millaa

Also in the Uk you can get a special key through the local council to access loos quickly if needed for changing etc so hopefully there is something similar in Oz. :x:

HappyAtom

Hi @robbiedoo62 from across the ditch. My staging was the same, and I had a stoma from Jan 17 until August 17.

I only had one leak ever and that was in hospital before my excellent stoma nurse switched me to sensura mio convex bags and thin Hollister rings (a bit like putty). I just used to have an extra bag and some wipes in a nappy sack in my little handbag all the time.

I went back to work part time after eight weeks and then full time. I had one or two gurgles (no smells) but nothing worse than when someone’s stomach gurgles. I wore normal clothes and got more confident in wearing tighter clothes as time went on.

I was glad to be rid of it (celebrated with a trip to Brissie and Surfers) but it wasn’t anywhere near as bad as I’d imagined. Ps. I said no smells - except for fish. I would only eat fish at home and when a bag change was due 😳

Dan-888

Hello @robbiedoo62 ~ I had the same staging as yourself and a stoma for an ileostomy for a year, reversed 5 years and 8 months ago.
I became very over conscious of the noises of my stoma bag but absolutely no one else could hear a thing!
Ileostomies are higher up the digestive track so there's naturally less odours. And none escapes until I empty my stoma bag, or on the very few instances when I got small leaks.
However my leaks were only at the very beginning until I stopped being in such a rush and spent more time when changing bags to allow more time cleaning and especially drying and allowing the new bag's adhesive to fix to my skin around my stoma.
I've even been 'swimming' in the dead sea in Jordan without any issues even in the heat! I did have extra adhesive collars but I had a feeling I might not even have needed them!

louise2016

Hi @robbiedoo62 i had a stoma put in after diagnoses in jan this year, i welcomed it staightaway, thought of it as my friend as i was in so much pain before having it, due to low rectal tumour. It is early days for you, but you will get used to it and become more confidant. I always wear goid support pants and a fulcionel belt too at times. My leaks were very small, but only due to me rushing a change. Take supplies out with you and you will be fine. It is now part of me, mine is permanant. I get on with it very well. No need to worry honestly😊 Best wishes Louise :x::x::x:

HopsiFAP

Hi @robbiedoo62 I have had my ileostomy for 9 months now...god I can’t believe that!,.. anyway I echo all the fantastic advice given above. I was nervous too but I was also intent on not letting it control me. You too will get there ... be kind to yourself though.. it’s massive shock to the system,

but I have hardly ever had any leaks. One tiny one when out but I sort of felt it and had a quick feel... big jeans and sat down for lunch ! So I just nipped to the ladies and made a quick change in there... as others say never leave home without some spare bags, disposal bags, and spray off. No one noticed a thing.

The only other small leaks were early days at home whilst still trying out new bags and like others have said, sometimes you might find yourself rushing a bit too much so the bag isn’t stuck on as well as usual but that really hardly ever happens. You will find the right bag for you and that helps enormously.

I’ve never had trouble with smells, you can use a wee spray after use in public toilets if you are worried but I have never bothered and no issues I know of. It can make little noises but that’s mostly at home or in bed and if it does fart in front of friends it makes us smile.. no one cares .. in my experience 😀

Little steps at first.. just to the local shop or to a close friends house where you feel safe and little by little you’ll get there ... but don’t rush or put pressure on yourself. If you need our support we are always here xxxx

robbiedoo62

THANKYOU to all of you for taking the time to reply! I have had the most amazing 5 days- changed style of bag- now have a Senso convex- wow, what a difference- feel like a different person 😘👍- getting there and it’s lovely to know that I’m able to ask the ‘dumb’ questions safely when needed 😊- thanks again