Anyone with two stomas

Hello Ian,

Sorry to bother you again, but you are " the Master" of anything to do with an ileostomy.

I break wind (burp) very loudly after I eat and drink. I know I am at home with my family and they don't mind. But I am worried that when I go to my favourite fast food restaurant, I know I will burp very loudly. Any hints or tips, please?

Also my ileostomy output is very active. Any tips on how to get it regular, please?. I take Loperamide but all that does is thicken the output.

Thank you,

Lisa

Hi Lisa,

I hope you are building confidence up a little bit more. 

I was going to suggest you join the colostomy association Facebook page, it's a closed group with fantastic support from the friends there - and there are a good few who have two stomas. I know you will get lots of sound advice and support there. Macmillan are great too of course. ,

Very best wishes, Rachel. 

Hi Lisa

I have gone back to your original post and your comments eating much better and can't wait for your food.

Are you eating more because you are hungry if so you might want to stagger your eating pattern and instead of a large meal you have several smaller meals throughout the day and aim for a cut off daily time for your last meal of the day maybe between 4 and 5 o'clock .

When eating meals take your time and chew everything until it almost becomes like baby food.

Regulating your output comes from regulating your input - as ostomates we watch our food going in and also coming out.

The following works for some people to slow down out put - marshmallows, jelly babies, gummy bears.

With regard to burping you might need to think how your eating (see above) do you drink at the same time as you eat? Try not to but have a drink before and after your meal not during.

If we think about what a burp is which is an escape of gas or wind from the body and can be caused by many factors such as drinking fizzy drinks, beers, drinking using a straw or out of a bottle even laughing.

It might be useful to start a food diary to record your food intake and all the experiences you have.

There is a simple app on the app store that lets you record your food intake and time together with effects and time you experience  problems. That's all it does but it will give you a good indication of what's going on with your output and and symptoms you have.

Note your liking for a particular fast food restaurant (if its the ones that specialise in hot and spicy meals  take care with the strength) and would remind you that fast food refers to the preparation and service not the actual eating of it.

Going out with friends will be a good tonic and do you the world of good but don't get carried away and eat quickly to keep up with your friends just take your time and remember about drinking.

Good friends, I am sure, will laugh it off if you do burp during a meal just as your family does at home.

On the bright side with Christmas just round the corner you can start your Christmas dinner at breakfast and keep going back for a small plate during the day, maybe avoid the Brussels sprouts.

Seriously though it takes time for our stomas to settle down and the time scale varies tremendously between each person - how long since you had your stomas fitted.

Ian

Hi Ian,

Thank you for getting back to me. It means a lot.

I have had my ileostomy for about 6 to 7 months and the burping is still the same. I don't drink during a meal but it still happens. And don't drink soft drinks, only still water and 2 cups of coffee and 1 cup of peppermint tes. But thank you anyway.

I do try to chew my food throughly but I do forget. I will try marshmallows and jellybabies.

It is all a balancing act.  My favourite fast food is a famous hamburger outlet. So no problems there

If I burp, then people will have to get over it. And until they have been through a quarter of what we have bern through, it is their problem.

Thank you and you take care. Don't worry about the brussel sprouts, we don't like them, we have cabbage.

Lisa

Hi Rachel,

Thank you for your lovely message.

I think I  may try Facebook, but I like and feel safe on Macmillan. And others who have had cancer and had stoma operations. We are all so brave and been through so much.

Take care, kind regards and thank you,

Lisa x

You are so welcome. The colostomy Facebook site is a closed site. Nobody can see your posts. And lots there have ileostomy, colostomy, urlostomy, and cancer - it's very safe and confidential. 

Very best wishes. xxxx

i have 2 stomas and would be happy to chat anytime you wish

hi 

in april 2016 i had three stomas > a ileostomy a>urorostomy and a fistular the fistular is now gone but it was hard at the time first of all trying to accept them all now i have only the two off i am still on this planet though i know it is hard work but you will through time learn to just accept it is what it is i was on holiday in may 2017 and i was changing the stomas one day and all of a sudden i named them both my wife laughed with me at the names i called the ileostomy winnny the pooh and the urostomy sweet pee i read on the internet that if you are ready to name your stoma it is a way off accepting them as they are now part of you i still have problems with winny comming off my skin and sweet pee plays up now and again i get a massive search at airports all the time i dnont think most of them know what a stoma is i wear braces on my trousers and that triggers the alarm then my bag with medication always goes on the plane as hand luggage as i dont want it going missing the group here will give you all the advice you need they are a great bunch and please remember you are not alone !!!!!!!! 

best wishes Rab 

Hi Rab,

I have two stomas which I have had for just over one year.

I have named them, the poo one is Krakatoa for obvious reasons and the urine is called Tracey after the nurse who told me about naming them and she takes the wee, wee out of me.

I don't mind Tracey but I hate Krakatoa and I always will. It may have saved my life and at the risk of sounding ungrateful, I still hate it. It goes off when I don't want or need it to. It burst it's bag in the hairdressers the other week and I managed to get to the toilet and do a quick change and the hairdressers were very kind. Again another reason to hate it.

I have a fistula which constantly leaks and I am incontinent. Another reason to hate Krakatoa. I spoke to the colorectal surgeon who said in order to sort out the fistula, he would need to resite the poo stoma but this may not work and there isn't any guarantee the fistula could be fixed and I could end up with a peg. Again another reason to hate it. I was and still am upset.

I don't mean this in an funny way, but it is nice to know I am not alone in having two stomas. But I wish we didn't all the same.

Kind regards,

Hi Rab

You should be able to get a printed card with details about your stomas and equipment , which you can give to airport or port security staff. We have a letter in English and French( that's where we go) on Royal Marsden Paper signed by them , explaining the reason you must have a skilled and discreet body search.

We haven't needed it yet but it is good to have.

Lucky and brave  you for making it to an airport! We only ever go in our car, full of supplies and a little home....