Hi everyone. My husband was diagnosed with bowel cancer last August and has had major surgery and chemotherapy, now finished thankfully.
He now has a stoma, an ileostomy to be precise and I was wondering how many members have one and if they manage well with the caravan loo or only use the site facilities.
He's embarrassed going to the site loos but doesn't want to use the caravan one.
think either would be fine, he should have been given a Radar key( disabled loo), access to larger toilet and hand washing facilities in the one room ,or family type facilities. Only time will tell when he feels able to use the facilities . Good luck and enjoy your camping.
Why not use the disabled toilet facilities that are usually on most sites. Very private with lockable door and room to move. Sink and hot water and shower in same space.
Good luck
Hi.
Thanks for your replies. He has a radar key for the disabled but forgot to take it when we went away a fortnight ago. I keep telling him it's nothing to be embarrassed about. When he had it done in October he was fine with me nearby but now even shies away with me.
I think he's most troubled with the odour and is trying everything to camouflage as much as possible.
I'm not sure he'll ever get over that side of things.
I have a stoma, although mine is a colostomy. I always use the facilities in the van, loo & shower, normally 40+ nights a year. A candle in the wash room seems to be more effective than any of the air fresheners I have tried. It makes me smile when people pay a lot of money for a nice caravan with loo & shower, & then don't use them!
I too had an ileostomy 2 years ago after bowel cancer, thankfully had it reversed after 10 weeks after being given the all clear, however I did use public/disabled toilets to empty my bag, to be perfectly honest I didn't give a toss whether there was a smell etc I was just grateful I was still here and able to lead a normal life, yes you may get a smell but without being crude you also get that from healthy people, my advice is just enjoy your pastimes and don't worry what other people think, I am just glad to still be alive, I am sorry if that sounds simplistic but that's what having survived cancer does to you, if he has an ileostomy it will not be forever so enjoy yourselves and use whatever he feels comfortable with, after all do we not all go to the toilet, I wish him the very best of luck in his recovery, I am now 20 months down the line from my diagnosis and loving life and caravanning.
I agree with kpnuts. Being here to tell the tale is the main thing.
Apologies in advance if some of this is TMI. But I think it's important to recognise that there is a life to be led after, and in virtually all respects, a normal life at that. And the more we all know about this stuff, the less those affected by it need feel bothered.
In 2010 I had a perforation due to diverticulitis and had a temporary colo. That was reversed but the join needed time to heal so using the same hole, they did a temporary ileo. I used normal loos with both.
Then that was reversed back to OEM in 2012.
Of the two, I found the colo easiest to manage. The output essentially was normal, with all that that entails, and at "normal" timings.
The ileo was far less offensive but being further back upstream, filled the bag far more quickly, and with liquid.
Daytime was fine. But for 6 months or so I had an alarm routine every two hours at night so that I could empty the bag without risking a burst. A friend with an ileo ruined two beds that way. I wasn't going to risk that, so just got on with it.
At the time we weren't 'vanners but had we been, I'd have been delighted to have our own facilities to use. Not because I'd have been bothered about public loos, but I preferred to kneel and public loos weren't always so good for that. That was just me.
As kp says, we've all wished we'd given it a minute or two using a cubicle after someone else. However they deliver the goods.
I was more bothered about noises. You can't clamp down on them as you can normally. With family and friends, I'd just laugh it off. A lift full of strangers, I'd just hope. Of course, it'd only be a sound. The bag contains the gas
I did say this might all be TMI. But I do feel strongly that this is a procedure (often described as a Hartmann's) which is a life saver and ought to be more generally known about and understood.
carken, please pass on my best wishes to your husband. Life's there to be lived. I wish him all the best.
------------- Mike
My advice is worth no more than the price paid for it
Thanks for your replies.
He had two tumours first and a third was found during the op so had most of the bowel removed resulting in a permanent ileostomy.
He jokes about it a lot so still coping that way. His mate knows someone who calls his Bilbo so Ken has named his Frodo. He's also jokingly threatened to lob his bag at some of the idiots who cut him up in traffic lol!
I'm sure he'll feel better soon about it all, he says very often he's lucky to be still here and thinks what the outcome could have been if the surgeon had missed the third tumour. It didn't get found with the camera or the CT scan.
Wish him all the very best from me carken they found mine through the test card that came through the post, I have been doing them for 16 years so that's 8 tests and this was my first and hopefully last negative test, I count myself very fortunate as I had no symptoms and if I am honest I was not going to have the camera until my doctor advised me too, I had a bad time after the op and lost 2.5 stone in 18 days, I have now put it back on and feel very fit, I agree a sense of humour is a must to get through it all but there is a life to be enjoyed and appreciated afterwards which I probably took for granted before, Rome wasn't built in a day it took me a good 9 months post op to start getting some semblance of normality back in my life and about 12/14 months for the body to completely heal.
My friend's ileo resulted from serious ulcerative colitis. As such it was permanent. He runs his own business and also plays in a band and I know how he values the quality of life he has now, compared to when he seemed almost permanently ill before.
I agree a sense of humour is good. It also left me with a feeling that whatever the procedure or test, take full advantage and let them get on with it. Nothing fazes me now.
Best wishes to you both.
------------- Mike
My advice is worth no more than the price paid for it
Carken, you can buy radar keys in good pharmacists, ones that stock various orthopaedic and disability / mobility aids etc. Should you need one when away from home in future.
Good luck to your husband, I have a good friend who is regaining his life after years of Crohn's restricted and eventually threatened his life. Bit of re-plumbing and he is a new person.
Like with mental health, it would be good if more people 'came out' on this issue. I hope your husband gradually gains confidence and loses his self consciousness. He has nothing to be embarrassed about.
Thanks kp. His was found through a routine card too but the annoying thing was that in June 14 doctor sent him for a camera because he was anaemic and they removed two normal polyps. He was put on 630g of iron a day and every time he was taken off them and checked he still had low iron. This went on until August last year and he had the routine test come through, he was adamant he wasn't going to do it but I said something's wrong as he was extremely weak by then. So he had it done and 2 were picked up, one in the centre and one on the right. He had to have a blood transfusion before the op as he was so weak then during the op one was found on the left as well.
Still, he still has his naughty sense of humour and is glad I think that I nagged him to have the second camera.
We've just had a week at Ross Park in Devon, our favourite site, and it was good to get away. Trying to work out our next one now. He's on a phased return to work, 4 hours 2 days a week with Network Rail. Only trouble is that as well as his bag he was diagnosed with glaucoma 18 months ago and recently been given two hearing aids to top it all off. The railway are still trying to work out what to do with his glaucoma so have a bit more to chew on now lol.
Thanks Deborah.
He has a second key for the van now all I have to do now is remember to put it on my caravan checklist which I print off every time we go away.
Thank you all for your replies, I'm off to bed shortly,
Goodnight all,
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Topic: Caravanning with a stoma
