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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🤢

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

HopsiFAP

@robbiedoo62 Fantastic. Having the right bag makes so much difference. I’m so pleased to hear you sounding happier and confident. :x::x:

robbiedoo62

Thanks HopsiFAP- off to oncologist tomorrow to see what the prognosis is, treatment blah blah!
My CR surgeon said he believes it will be 5 x 6 weeks of daily chemo and radiation - ARGH- what a Xmas pressie for me😉👍

Lizalou

So glad that you got the stoma care sorted out before you start the next round of treatment @robbiedoo62 . The problem is not knowing what is normal or what to expect, So i am glad you found us

Good luck for tomorrow. Again, whatever the treatment plan, some of us will have experience, so just ask.

Best wishes :x:

robbiedoo62

THANKYOU Lizalou! It’s 3 am here now- been feeling ‘off’ for hours and wide awake - eating dry crackers and drinking soda water 😂

springer michelle

Glad you got this sorted. And it will help if you have radiotherapy and chemo cos that's the only time I had leaks after radiotherapy my output was like lucazade, very fizzy and it found a way through, so hopefully you will have no problems. Good luck :x:

Seashells

It is very early days for you @robbiedoo62 I think we all suffer regular sleepless nights in the first months but your mind does process slowly and you will reach a point where it doesn't occupy you all the time. I had 6 weeks daily chemoradiotherapy - it normally takes a while to set up so you may have a few more appointments and scans first. Don't be surprised if the start date is after Christmas, just make the most of your free days. My first 4 weeks were fine, the last two and two post RT were tough but managable. Good luck :x:

Gavin

Hi speak to the stoma NURSE perhaps the bags are not right for you and might need to be changed like my ones was. I had surgery the beginning of November 2017 and noticed a smell once at a M#S store in Doncaster but the next day spoke and seen the nurse who suggested this other bag tried brilliant it will take time to adjust i have had an arsehole for 57 years its just changed places i might be able to have a reversal if the cancer in goes but if it doesn't i still get an extension to life try to stay positive. :x:

sweetcheeks

Morning @robbiedoo62 , I hope you are a little more relaxed with your new uninvited friend , Geoff’s was called Sylvanus!! Unfortunately they never bonded, but actually he had no real problems once the right combination of bags was found we used a putty ring and stoma ahesive, which worked tremendously well and no leaks in 7 months, they have now parted company but Geoff now realised that he actually wasn’t as bad as he thought as post reversal for Geoff has been a lot harder!!! Feel free to check us out ( it’s usually me moaning to be fair 😊) the very best of luck
Tracey
:x::x::x::x::x:

baz

Hi all, just joined and first post. I was diagnosed (officially) in Sept 17 and had my anterior resection in Oct. I was determined that I would be strong for my family and in the main have been as they have been for me. I ventured out within 2 weeks of the op getting buses and walking but find myself checking how much is in my bag very often. It’s as much a personal thing as I don’t like the bag having a lot in. I don’t worry so much about a leak as I take great care in changing but I do find that when I empty my bag the odour can be a bit strong but hey, plenty people are worse 😊. The ‘gurgling’ can be funny if I’m with family or friends. Unfortunately I have not been given the opportunity to try different bags which I feel may have helped me to progress better. After what I felt was a great confident start I have now suffered a hernia around my stoma which is taking some time to get specialist support for. This has seriously knocked my confidence and progress but I’m sure it will work out. I am hoping for a reversal in the next 2 - 3 months but it is the last couple of weeks which seem to have taken their toll.
All in all I know I’ve been lucky compared to many and I intend to get through it. I wish everyone the very best of wishes (and luck) as you all face your challenges. I do know that sharing helps.
Merry Christmas.

Lizalou

Hi @baz and welcome. I am glad you are doing so well, good for you!

I agree the hernia is another unfair complication, but mine was fixed when I had my reversal. Before that, I was very careful about exercise but also had a support belt prescribed by my stoma nurse and fitted by a specialist fitter, and that made things feel a lot more comfortable.

I also e mailed various other stoma care suppliers for samples....I ended up keeping with my original bag but was pleased to know it was the best for me.

Hopefully your reversal will be fairly soon, but you could try other options while you wait.

Best wishes

baz

Thanks Lizalou, I've got an appointment to get a support belt fitted. They said it can take about 3 weeks if I need a made to measure belt so hoping a generic one will do the trick. :)