Chemo & Ileostomy

Hi JcP69 and I’m sorry to hear that you’re having such a tough time of things. My Ileostomy was a night owl and I think the longest I slept without getting up to empty the bag was 4 hours. I think i eventually started doing while still half asleep. You could maybe try keeping a food and drink diary? Do you have a bedtime drink that could be triggering the gas?

It might be an idea to ask for an appointment with your stoma nurse for a few ideas. There are some extra adhesive strips that you can get to make the bag feel more secure - your nurse may be able to supply them or you could contact your bag supplier or look at some of the ones that do free samples? 
I can imagine that cycling would be a problem. Does your stoma ever have a quiet time? I used to wear quite large bags but wondered if you could wear a smaller one and cycle during the stomas quiet phase? There is also underwear that has a pouch to support the bag (the site is called Vanilla Blush) but it may be that the bag would still be in the way. Could you use a recumbent bike at a gym?

meplus.convatec.co.uk/.../

Swimming is still an option if you put a clean bag on before and after and there’s some mens higher waisted swim shorts on the site I mentioned above.

Yes it is recommended to follow a beige diet but you could try introducing other foods although I would still avoid seeds, pips and things that could block the stoma. The usual mantra is chew, chew, chew and then chew some more.

There is a stoma board that you could copy and paste your post onto for some advice - the link is below

 Ileostomy, colostomy and stoma support 

Not sure that I’ve been much help but I hope you’re able to overcome some of your issues and your chemo goes well

Take care

Karen x

ps if there is the possibility of a reversal further down the line then there is also a section on the above board

I came on to post an update about my hubby and then saw your post…you sound like we’re my hubby was.  Please read my profile it may help you.. I will warn it’s a long read…he was a gym goer and cyclist…he too had an illeostomy and stoma…trying different bags may help..we found using additional tape on the bags really helped.  The soreness is awful I know.. please seek help from professionals…maybe contact suppliers for samples that’s how we found best that worked for him.  Hopefully things will get better but we do know that dark place.  You want normal back I know…you will find a new normal…best of luck and one day at a time is enough to deal with. X

Hi sorry to hear you are having problens.could you start introducing new food items a little at a time.I was told to try an egg cup full and see what happens

Ileostomies do tend to like to be emptied frequently.I have never gone a full night but am quite good at only half waking so I can get back to sleep.

Its really trial and error to see what suits you and your lifestyle.

All the best

Kath

Hi Karen,

Thanks for the reply, I'm using the half moon stickers to hold the bag on, diet wise nothing has really changed, I eat my last meal between 1730 and 1800 to give it a chance to get through to the bag before I empty and go to bed.

Dr's were completely unhelpful regarding my sleep, I'm trying Reflexology on Friday, I already use magnesium butter on my feet  and sleepy spray on my pillow, I was taking Nytol tablets but I've tried to stop taking them.

I think if I was dealing with either the Stoma or the Chemo it would be easier, I blood cloted 5 days after hvg the Picc in, it just feels like one set back after another

Thanks for the reply, normal can't come soon enough .. I think I deserve another bike when it's over

Thanks Kath,

I'm taking an Imodium type of tablet to slow the amount of times I empty, but it has no affect on the gas at night .. its like a bloody barrage balloon

I struggle with wind in my belly! I had stoma op in March and several times since the stomach pain has been pretty bad.  My bag blows up and sometimes there is a poo-nami!!! But still the wind pains will persist!! I have morphine for the pain after trying with Codeine phosphate.  It's not much fun is it!!!???!!!

Hi .. no, not much fun at all, I just want to get Chemo done then get the reversal done 

That’s just what he did…got a new bike! You will get there but I know hurdles and tweaks have to happen along the way.  Sometimes low fibre diet helps and just carrots turnip peas for veg as others tended to cause more wind..and white bread, mash potatoes, etc good advice on diet sheets and then add a different food item a bit at a time and see if it effects output or gas …ask questions anytime. 

Peas are a definite no no .. horrendous wind from them