So I learned today I have a high output illeostomy

[Shamrock4806]

1500 ml per day apx. when I'm on my tailored diet and watered down ORS, absolute chaos if I'm not.

I didn't know if I should switch to high output bags or stick with the present standard bags as I had volume, but chunks as well which would clog the small valve.

They gave me Loperamide when I first got out of the hospital but I didn't have insurance that covered it nor liked taking any medications if I can all help it.

I'm urinating fine, only get a little thirsty and dizzy in the mornings after a long sleep in account I've haven't been drinking the ORS as much and likely sleeping with my mouth open.

AI says it seems I have a well managed illeostomy.

But my diet lacks the variety I used to enjoy, so I could try Imodium AD in small quantities and see if it does the trick.

I did learn I can have one slice of pizza as long as it's not got certain spices, too much meat or veggies on it.

It's all keeping within my rules, no fat over 10% RDA per meal every four hours or so as not to trigger extra bile production and diarrhea. Not too much protein at one meal neither.

So I guess I should try a light Imodium AD supplement and record the differences.

[Shamrock4806]

Well I was going by 12 hours of recorded data but since added the complete day and now it's over 2000ml/day which puts it firmly in the high output illeostomy category.

The problem I'm finding is one commonly experienced by many illeostomy types with high output, they can't use the drainage bag with the spout on account not all the output is always thin enough or contains solids occasionally thus clogging the valve and the hose. Maybe that's intentional.

I'm suffering with little sleep having to dump the bag every TWO hours on average and yes I do reduce food intake before bedtime but I have to eat something or else I can't sleep. A bigger bag really isn't a help as it adds too much weight and will cause wafer separation and leaks.

If I don't eat then I get a nasty bile flush high in bile salts which erodes my seal and irritates my stoma opening. So for me to keep those bile salts down is to absorb them using pasta (mainly) or cream of wheat throughout the day.

I drink my watered down ORS because if I drink something else (even eating a few pieces of watermelon) then it goes right through me instead of being absorbed by the intestines.

Whenever I take a long car ride or have to go to a doctor or anyplace where I have to wait, I have to starve myself eating very tiny meals or else be stopping every 5 minutes to dump. This is intolerable.

I go to the bathroom about 14 times a day (24 hours).

There are no wide mouth, tube ostomy drainage systems I can use which would require some water flow to keep thick output from clogging up the system.

Maybe that's why wide mouth bags with wide mouth tubes wasn't created, it's too complicated and likely fails under practical use as a water supply is needed and a very large floor tank.

[Shamrock4806]

Okay apparently not an high output illeostomy per say, but one created on account my rehydration solution isn't strong enough on the electrolytes to replace what I'm losing in output so it's created more runny output, hunger etc.

So since I've upped my electrolyte replacement balance I've felt less hungry and using the bathroom less.

I'm also taking Imodium AD multi symptom and now Bean-O on account of gas issues and trying to slow down things so nutrients get absorbed better.

Looks like I've got some more fine tuning to do.

[Shamrock4806]

Went off Imodium AD and Bean-O.

Apparently I was doing two things wrong.

1: Not replacing the salt enough that I was losing through output via my rehydration solution. This caused watery output, hunger and many bathroom visits. Once I solved this my output volume decreased.

2: I was drinking my rehydration solution from a straw as it came with the metal cup. Thus caused gas, which I felt gas pains but relieved it enough though the often dumpings caused by the low salt rehydration solution.

So I'm eating a 1/4 pound of pasta with just some Lite Mayonnaise as it's slow to digest and comes out good, it also absorbs bile salts so it's not irritating my stoma lumen os or whatever it's called. Also my wafer lasts longer as the paste seal isn't being attacked as severely. Still getting 8-10 days on average, swimming in pool and using the sauna, even taking hot showers.

I also eat other foods as well, like steak, skinless chicken breast sandwiches and egg and cheese half sized pita things, Eggo waffles plain, bagels, yogurt and cottage cheese. Still sticking to the 10% RDA fat limit per meal as not to trigger extra bile. I take various vitamins after a meal at about lunch time which consists of the pasta.

I might go back to using the Bean-O though as my digestion system is slowed down now which allows longer fermentation and gas to occur.

Bean-O is a pre meal digestive enzyme that eliminates the gas and just doesn't break up air bubbles like the ingredient in Imodium AD multi symptom does.

My weight shot up from 177 to 180 in a few days.