Ileostomy Bag Filling with Water - Need Help!

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stace20
Nov 16, 2013 9:01 pm

Hello, my ileostomy bag keeps filling up with water. I've been to the doctors and they gave me Dioralyte and Imodium, but nothing is working. Can someone help me, please?

lorraine-cooper1960
Nov 17, 2013 1:01 pm
Hello Stace20, you never mentioned whether your ileostomy is recent. If it is, then it's normal.
Certain foods help thicken your output, but it is a fine line between "firming up" and then having problems with bags lifting off and constant diarrhea. Imodium and the other medication are certainly effective, but I would try eating some marshmallows, cheese, and other foods that thicken output, again in moderation.
Try checking with your Ostomy nurse who will be able to give you a diet plan to follow (remember everyone is different so use it as a guide, not a definitive text) and make modifications as you need to.
When making dietary changes, try one thing at a time for a few days. If it doesn't cause problems, move on to the next, etc., and keep a diary of food and effect. You will then be able to pick out patterns.
May God bless you and help you with your problem.
Don't despair, each and every one of us has been there too.
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Slow momma
Nov 25, 2013 2:22 pm
Hello,
I had the same problem and it kept on until I was so dehydrated I was put in the hospital and wasn't getting any better. My kidneys were shutting down, etc. I was so scared I finally called my ostomy nurse as none of the doctors knew what was wrong. My ostomy nurse said there's only a small part of your intestines that produces bile salts and didn't know if I still had mine or not. My output was always watery. She suggested my doctor order me Questran to use. It slows things down and firms up your stools. I was drinking 20 bottles of water and eating about 10,000 calories a day, but yet my body was dehydrated. I was losing 2 pounds a day. I was so weak I couldn't hardly stand up and walk. Us ostomates have to always worry about dehydration even in the winter. It took about 2 weeks for the medicine to fully kick in once my surgeon ordered it for me and it's made such a big difference in my life. I have energy again and can function better. That medicine has been around for a long time. I don't know why doctors don't suggest that for us before we have so many problems. But everyone is different. What may help one won't help another.
Good luck with that. Barbara
ysoraris
Nov 25, 2013 11:57 pm

You can use psyllium. You can find it in a health food store. In some stores, you can find it by the pound. Psyllium helps you with constipation and diarrhea because it absorbs liquids and softens them as required, so your stool will be more regular. I hope this helps you.
Go to this site www.candidacleanser.com. I think you are going to be surprised by what you're going to learn. Good luck and God bless you!

Past Member
Nov 26, 2013 10:39 am
Hi,

Mine is the same...I take up to 12 Imodium a day and sometimes it has no effect at all. I, like others, have ended up in the hospital due to dehydration.

I find eating oats thickens things up but then sometimes it's too thick! Swings and roundabouts really. I've had my ileo for 5 years (is/was supposed to be temporary!) and take the Imodium, drink Dioralyte (2 sachets in a glass), and my gastro lady put me on omeprazole - 2 a day - this helps reduce the amount of stomach 'juice' (sorry forgot technical term). I have heard from my gastro lady you can get a hormone injection that helps reduce the amount of liquid your stomach produces but frankly I am not too keen on that idea... Also, I get thickener sachets from my bag supplier which I pop into my bag which helps thicken things up and stop stuff sloshing about... (I am in the UK - Salts Medilink)

I think that the only thing that doesn't go straight to my bag is water - tea, coffee, beer...the whole lot goes directly to the bag and although my surgeon says it doesn't, I am the one with the bag and I say it does!

Try and get an appointment with a gastroenterologist - mine has been very sympathetic and helpful.

Hope this helps a little.
 

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Daven68
Nov 26, 2013 5:18 pm
Hi Stace20, I have had mine for almost a year now and have the same problem. I spent 5 months in the hospital dying of starvation and dehydration. I went from 200 pounds to 99. Gastrologists (I now have little trust in them) had me taking every medication they had to slow down my output, including opium, all the above-mentioned drugs, and I also had to endure 2 months of some kind of painful shot in the stomach 3 times a day, all to no avail. Finally, they admitted that they removed so much of my intestines I now have what is called "short gut syndrome". Anything I eat turns to liquid and goes straight to the bag. In the end, the only way I can survive now is to be on TPN and Potassium chloride by IV for 12 hours a day. I have a permanent IV port in my chest and I do all this myself at home (I live alone). My weight is now about 165 holding steady and my strength is mostly back. Although the doctors want me to keep taking all the same meds to try to slow output, nothing makes any difference so I quit taking all that stuff and I feel better for it. Even though I am fed by IV, I still get hungry and have to eat as normal, so I have found the only way I can slow the output is to control when and how much I eat. I usually eat a very small breakfast. An hour or so later the output slows to the point of being manageable enough for me to get out during the day and do what I need to. During the day, I just very lightly snack to curb the hunger. When I'm done for the day, I will have supper and at that point, I'm home and can manage the higher output for the rest of the evening, overnight I'm hooked up to a larger high drainage bag. Definitely had to change my lifestyle but I am getting by. Don't know if any of this helps but just wanted you to know you're not alone.
God bless.
lorraine-cooper1960
Nov 28, 2013 7:15 am

I understand, I have just had my second ileostomy in 4 months. I'm still in hospital at the moment and now have the same issue as my ileostomy is so short. I have to eat very small amounts and my last morsel of food by 4pm. My meals have to fit on a side plate, or I make nice soups which I have a cupful but always blended. I also have weekly blood tests to check potassium, salts, and other elements. I haven't offered advice as I am not qualified and that is for your primary health care provider, but I wish you God's blessing and His care and protection.

dragon2
Dec 15, 2013 9:17 pm
Hi Griffin here, I'm nearly 10 and I have some ideas on how to help you feel better. The first one we used was marshmallows, white bread, banana, lots of milk. Make sure you eat every 2 hours because then you can keep some food in. They said milk goes hard in the tummy and stays in for a bit. (Nodia, loperamide hydrochloride 2mg,) ask doc!! Tablets we had to use 4 tablets after emptying the bag each time. Mine was runny for ages, nearly 4 months, but you have to keep up the sodium. That's salt because you lose so much at once and feel yucky. I have had an ileostomy for 5 years now and it is awesome. When I start school again, I am going to show the children in my class what my bag looks like. Then they know and don't tease me about it because they know about it! Now I know people here have an ileostomy, it's better!
dragon2
Dec 15, 2013 9:51 pm

Hi Griffin's mum here. The other thing we were told is don't drink water because every 250 ml of water pushes the food through too fast, so we used milk, milkshakes, Pedialyte which is electrolytes with sodium, also food thickener drink. Hold your nose while you drink it and you can drink it, taste not so flash. But it works..
Even now if Griffin drinks water, his bag is so runny, but we have found a drink called R-LINE!!

(R-LINE::::per 100 ml, energy 117 kj, protein 0 g, fat, total, saturated 0 g, carbs 6.5 g, sucrose 5.0 g, glucose 90 mg, sodium 3.9 mmol. This is per 100 ml!!!
This makes it not runny, but if he gets tired, the content of the bag will go more runny!!!

lorraine-cooper1960
Dec 16, 2013 12:39 pm
I am so proud of you, dragon boy. You seem to have it figured out very well and are doing the right thing in showing your school friends, etc., as it isn't anything to be ashamed of. I think some of us adults could take a note from your book, and you must have a very lovely, level-headed mum to bring you up so well.
ron in mich
Dec 16, 2013 6:36 pm

Hi all, I found that staying away from anything with high fructose corn syrup in it helps me. I sip on water all day, but also drink other stuff like milk, juices, coffee, tea, and foods that thicken my output. Some examples are toast with peanut butter, oatmeal, bananas, rice with some honey in it, and marshmallows.

Past Member
Dec 22, 2013 7:51 pm

My wife has had an ileostomy for over 20 years now and still has times when it is a tad watery, but she says eating small regular meals about every 2 hours.

Griffin, I was impressed by your fine advice and good to know you are proactive in school, telling your classmates. It must be hard if the kids at school tease you. I am a wheelchair user and people find it hard chatting to me in person, so I feel for you. How do you manage with the smell? I am always looking for my wife as she finds it hard when we are out. The stuff they advertise on here is pretty good. I ordered her some. Over here, we have to pay for blood tests ($20.00) and she has to pay charges to get her supplies. When we were in the UK, they said they would always be free, but here it is different. Also, there is not the support from Convatec, etc. When we were in the UK, we got Spectrum magazine and were invited to a few days where all the different companies would be there and show their new products. Also, it was a fun day out. I know I have gone a tad off the subject, but Griffin impressed me. Thank you all for putting information on here that aids others. I am grateful. Thanks, Andrew.

stace20
Feb 13, 2014 10:49 pm

Hello, thanks everyone. I had my ileostomy for 5 months. Xx