When I get that thirsty is because my creatinine levels in my kidneys are up and I'm usually low on potassium and magnesium. I found simple truth has a bottled water is distilled with electrolytes added in as flavoring. It helps replace what I'm losing in high outputs. I'm a high output ostomate. I also drink advanced formula pedialyte.
I also was recommended by a dr to eat baked lays potato chips to help slow my ostomy and they really do work well.

I too drink boost I started on them in the early 1990's after having my first colostomy. They have been a god send and they will also help reverse some of the dreaded effects steroids have on our bones!

I have been using a time tracking app and find that I spend between an hour and a half to two hours a day fiddling with the pouch and i would be ‘checking’ about 4 to 6 times a day. Feel like I have developed a new kind of OCD around dealing with pancaking.

Hi Vorpal
I have an Ostomy so not an expert but someone with an Illeostomy suggested isotonic (sports) drinks to me - to try and ‘retain’ more fluid. May be worth experimenting

I definitely felt like I was OCD at first. I don't fiddle as much now, although I do still try to be aware if pancaking as a precaution. 

@lil-stomie

Hi!  I'm a teacher with an ileostomy, and I almost always go the entire school day (8-4) without emptying my bag (or maybe just one empty mid-day).  Granted, I don't eat much during a teaching day.  But, it seems that the mid-day for me is pretty slow for bowel movement.  My gut is most active in the evenings and night when I'm just sitting around.  I don't think that you will have to empty as frequently as you think you will. You'll probably not have any problem unless you are drinking to much fluid as this fills up my bag in a hurry (but still stay hydrated!).  But, we're all different.  

Best wishes!

Glenn

I can relate to what Glenn says. I am a light eater during the day and can get a pretty long period with very little movement and little in the bag. As well as getting into a routine I think our system adjusts 😀

@glenn-giroir

Thank you for the reply!  I am now free of the colon cancer and no longer have an ileostomy, but I will always be grateful this group for the wonderful advice I received here.

All the best to you,

Lil Stomie

@lil-stomie

That's great news!  I didn't notice that your post was from last year.  I'm so glad to hear that you're doing so well!

All the best to you also!

Glenn

@lil-stomie

Congrats lil stomie!!  I am so happy for you to be cancer free and stoma free!!

@squeakyandliza Thanks so much! I'm very happy and feel lucky and blessed! All the best to you xo

A document I was given when leaving the hospital from the Academy of Nutrition and Dietetics has some suggestions about oral rehydration for high output ostomies. Here are their recipes:

1. 2 cups Gatorade + 2 cups water +1/2 teaspoon salt

2. 3 cups water + 1 cup orange juice +3/4 teaspoon salt + 1.2 teaspoon baking soda

3. 1/2 cup grape juice or cranberry juice +3 1/2 cups water + 1/2 teaspoon salt

4. 1 cup apple juice + 3 cups water + 1/2 teaspoon salt

5. 4 1/2 cups (1 liter) water + 1/2 teaspoon table salt + 6 level teaspoons sugar  (World Health Organization's ORS recipe)

The last recipe is pretty simple and cheap, but I find the sugar covers a too-salty taste. It's pretty good. I read that some folks think Gatorade has too much sugar by itself, so dilution makes it better. It's also not cheap. I guess the sugar is to give energy to those who are very athletic and working out or running hard.

Those of you using International System of Units (metric) may need conversions or some old kitchen tools. There are 4 US cups to a US quart, which slightly less than a liter - 1 l =0.95 US quart. One teaspoon as ~ 5 ml, 1 tablespoon is ~ 15 ml. Most of these recipes make a US quart, close enough for a liter.

Hi, I have had crohns for 13 years and have an ileostomy. After being in remission for a few years, my crohns is returning. I was going to try slippery elm bark or manuka honey. Does anyone have any experiences trying herbal remedies? I am bit worried it will not agree with my bag....

Hi Didi,

I don't recommend, nor do I endorse, any kind of herbal remedies for treating Crohn's disease or other types of inflammatory bowel disease.

The problem with these treatments is that they are not proven to work and may actually worsen your symptoms and disease, which may lead to further surgery and or complications.

I highly suggest contacting your gastroenterologist to discuss a better treatment plan that has more proven benefits.

Good luck.

Didi...I strongly agree with Eric. Please do not try anything ever without running it past your GI or GP FIRST.  

The amount of time & money I wasted on so called healthier options is just not worth the years of training and experience a GI has on your disease. 

Please be careful. I never even add a vitamin now without consulting with my GP as even a simple vitamin can mess with surgical medications, (experience talking here) & land you sicker or alter  medication results.  Also when going for blood work always reveal added vitamins you may be taking to the lab tech. 

If your disease has reared its ugly head, please be sure & see your GI  ASAP  if you have not already. 

The damn thing takes over your life.

I can't even sleep any more. Going on any holiday or even any sort of significant "outing" is out of the question.

Couldn't even get up to the surgeon's office and he judged me as "not trying" to get help even tho I do have a long e-mail chain with, and numerous visits to, the local hospital in the quest thereof. So of course, I have not got any "help" and am confined to home min 22 hours a day because of this out-of-control monstrosity..

"Available resources" is a joke. And don't tell me, AGAIN, that "it will settle". It's been a TWO year battle and not even the gas has "settled".

I battle loose output (which is actually the more manageable option) pancaking (with the GP made a whole lot worse on the assumption more fibre was the answer - followed by many stoma nurses who could not believe too much is possible and then they referred to a dietician - wash and repeat), ballooning big time (seemingly unrelated to diet), pouches not adhering, pouches smelling, pouches sticking into me, pouches interfering with all my clothing or the clothing interfering with them and making dressing a nightmare (yes I'm another shorty), pouches too large and unwieldy (by necessity to hopefully deal the massive volumes randomly produced) .... and more.

So to those posting hre - I'm with you. This is NOT the "picnic" they promise - not for a lot of us. I suspect a rather large and silenced/ignored proportion of ostomates are stuck with this or similar.

I agree you don’t need to be told it will settle and yes some resources do leave a lot to be desired. But don’t give up, on this site you will find answers and advice. Find out if you have a ostomy group near you and contact. Help is out there. Yes it’s very overwhelming but it’s possible to adjust. 

Posted by: @noisymina

The damn thing takes over your life.

So to those posting hre - I'm with you. This is NOT the "picnic" they promise - not for a lot of us. I suspect a rather large and silenced/ignored proportion of ostomates are stuck with this or similar.

nosiymina

I hear your pain. John is right this forum has been the most help to me. It helped me find for myself the bags and system that works best for me, not perfect but manageable. I sound like the Experts are stumped by yours? I guess by you saying (GP) that your in the UK and your supplies need to be approved by a stoma nurse. If that's the case, for me I ended up tell the nurses what bags etc I wanted to try. a lot don't work for me a lot of accessories don't do the job but I ended up a solution thanks to Eric and the members here.

I still have bad days and episodes and a few scary moments but I'm still here.

Do you have a colostomy or ileostomy it helps to know?

Mina, for what it is worth, this is one little part of my own experience, small but I felt like I had accomplished something.

When I got my stoma three years ago for some reason I started thinking on “what shall I wear?” In light of everything else that probably seems a little shallow, and believe me I am not a fashionable person, but I started looking around on the internet, which luckily led me to the ladies’ clothing pictures and posts here on VeganOstomy (thank you, Eric). I have found the wonderful information and people on VO to be of such great help and comfort ….

…. and also found within my closet clothing that works pretty well to camouflage my pouch system and stomach (both stick out on that side) - and it gave me a lift to buy a few more flowy shirts and stretchy pants, though of course there was no need to replace an entire wardrobe all at once!

Having an ostomy is not easy, I know, and sometimes it is even hard.  I am thinking of you and wishing you the best.

Mina, I can hear the frustration in your post. Boy, do I ever identify with it! Sometimes, I have to actively restrain my right hand from smacking some medical professionals who seem to think there are easy answers! There aren’t! What I have found is that I need to discover my own answers. The best way to look for answers is to listen to other ostomates, because they have been on the same trial and error path that I am on. You are right - this isn’t the picnic that “they” seem to think it should be, but we have to find a way of making it work. What other choice is there? On a bad day, I give up, wave my white flag, and feel bad. On a good day, I say I am NOT letting that &*#£§* thing control me, and I try something new - anything. I have stumbled upon some things over the past 5 years, that mostly - not always - but mostly help. For example, I have found that I seem to be very sensitive to fibre, so I am careful about my fibre intake. But, (paradoxically) I have found that one teaspoon of Metamucil every day helps my stool to be more slippery, so it doesn’t stick to my pouch as much. I have found that using a stickie to cover up the pouch filter can help with pancaking somewhat (but not with gas). I have found that opening the pouch from the top (I wear a 2 piece) and emptying before my stool pancakes is what is the most helpful in preventing pancaking. When all else fails, I can irrigate, because I have a colostomy. None of these things were recommended by medical professionals - I either found out from other ostomates, or figured them out by trial and error. I still have lots to learn, Mina, which is why I belong to this site. I hope you will stay with us, and I hope you find some answers here. Hang in there!

Laurie