Managing Ileostomy Gas and Diet While Hiking and Staying Active

I have had an ileostomy for 15 months and still have tons of questions. I also have pancreatic cancer, am diabetic, and have a fistula which means I also have a bag on my back! In spite of this I have a very happy fulfilled life teaching two days a week, hiking, jogging, yoga and aerobics with a very supportive husband of 41 years. My questions:

I get up 2-3 times a night with my pouch filled with gas; it will leak all over if I don't and becomes rock hard. Are there better pouches that release the gas? I have to eat as much as I can to keep on my weight. Are there ways of eating where one does not have to empty the pouch for a day? I am asking because I go on all day hikes. Eggs work and meat on a tortilla do not give much output. Other ideas?? Thank you so much.

redrockhiker

Big hugs to you for being so positive with all that is going on with your health!



I (ileo '09) can't imagine not having to empty my pouch for an entire day. Remember, we have to keep hydrated, and the liquid alone that isn't absorbed by our bodies needs to be drained.



Some ileos get up maybe only once a night ... for me it's twice and sometimes 3 times if I've overindulged or my system is off.



But I'm used to it.



I go on hikes too. I carry an empty medium sized plastic mayo jar and put my drainage in that. There are also special 'bags' you can buy that seal very well and are safe in a backpack.



Maybe peeps just eliminate in the great outdoors ... I still go by that "bring out what you bring in" motto.



All the best to you!

Hello redrockhiker.

There are several bags that have a charcoal filter that let out gas.  I don't use bags anymore because I irrigate. However, at night time I wear the Danzac irridrain sleeve I've used for irrigation folded and sealed with bulldog clips. This sleeve has a huge capacity. It always amazes me how much gas is produced during sleeping hours and sometimes the sleeve is filled to capacity by morning.  There is no way that an ordinary bag could take all this gas without bursting like an overfilled balloon.

It might be an idea to ask for a sample irridrain sleeve or something similar just to wear at night time. (It's always worth experimenting to find a reasonable solution to mechanical and logistical problems)

Best wishes Bill

Hi Bill,



You have an ileostomy? Never heard of the irridrain ... will look it up.

Hello Beartrice.

I have a Colostomy - hence I can Irrigate.  However, the Dansac irridrain sleeve is about 70cms long, so when it is folded up and secured it acts like any other bag - except that it has a capacity to hold enormous amounts of waste. I wouldn't recommend it for daytime use as it does stink a bit when it is filling up. The waste from irrigation is quite watery so it probably mimicks that obtained from an ileostomy.  I wear mine overnight just in case it needs to catch the last throws of irrigation and Ive never been over-confident about waste coming out at anytime betweeen irragation in the evening and morning bathtime. Although about 80per cent of the time I need not worry about it.  The thing I like about the Dansac product is that it sticks just like a bag - I couldn't get on with the reusable sleeves from  other companies as they aways leaked for me. I hope this answers your question Best wishes Bill

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