Dealing with Morning Hangovers from High Output Ileostomy?

Hello, I have a high output ileostomy and take Imodium to try and slow it down. The biggest problem I have is that in the mornings it feels like I have been hit by a bus. I feel as if I have got a hangover from hell and I don't even drink alcohol!!!!
Does anybody else have this problem and how do they cope with it?

Hi Andy.

I believe I had something similar to what you speak of. For me, dehydration mainly means electrolytes. Just ploughing through plain water can flush you out and cause dehydration/electrolyte problems as plain water is dead empty water. I started putting 1/4 to 1/2 of a teaspoon of salt into every litre of water I drink and a cheap electrolyte tablet containing no sugar which gives me a little potassium, sodium, magnesium, and a little flavor. I also add a liquid magnesium. Just start with adding salt to your water as this alone gave me the biggest boost. Use a quality salt, not white table salt. Salt has been much maligned for a long time and I am of the opinion that the RDA's are way too low. Have a good read through this below regarding salt intake information. Making up my own drink has worked well for me.

https://drinklmnt.com/

Thanks Axl,

Nurse just told me the whole "dead water" bit yesterday. My beloved coffee is a diuretic, so I'm searching for alternatives. I'm going to start here. I've had enough of liquid IV and Gatorade. I have a smoothie almost every day, and that does help.

Abe

For that bus ride, you could also try using the "Pearl" sachets. Insurance actually covered mine. They just turn watery output into a gel so you get less movement with your appliance.

Here's the brand I bought.

Abe

I've never understood the concept of pumping so much water into anyone's system. I know we all need to stay hydrated, especially those with ileostomies. But the plain water flushes your system out and you need to replenish the vitamins/minerals. When it's really hot outside and I sweat a lot, I add a Halo Hydration pack to a small glass of water, usually before bed, to help replenish some of the things I've sweated out during the day. Otherwise, I'll drink some water but also milk, juices, Gatorade, Powerade, etc. to put stuff back into my system.

Your consultant/stoma nurse, dietitian should all be working together to get your output under more control, even if it means sending you to a special unit that just deals with high output stomas. What dosage of Imodium are you taking? Is it capsules or instants? You can take very high doses with doctor's advice only, and other meds at different intervals so that as one wears off, the other kicks in. Injections too. I'm sure you're already drinking Dioralyte. The dietitian may need to increase the amount you drink. You need to look at your diet too, as to what you're eating and drinking. Tea/coffee, fresh orange juice, etc. should really be avoided with high output stomas. Plain water, add cordial drink to it. You need to be drinking a minimum of 2 liters, possibly 4, but that's for specialists to advise. Maybe TPN if you're not already on it. With all the problems you're having, they really need to get on top of it. I highly recommend you insisting they send you to a specialist unit. If they don't get your output under control soon, kidney failure is just one of the many problems you face in the future.

Hi everyone - I've always found Lucozade Sport a really good way of replenishing - along with most over-the-counter remedies

Hey there,

I have struggled with dehydration. I have had to go to the ER 3-4 times for a bump up. IV fluids. And I am one that makes sure I am drinking water all day, will drink apple juice, take vitamins, drink nutrition shakes... pretty make sure I get and keep up on everything we lose so easily. The best thing I have found is Drip Drop. It's an oral hydration solution. Has everything we lose so easily in it. It has made a difference with me. I drink one every day along with a lot of water and some juice.

Have you had your levels checked? Does that feeling go away as the day goes on or is it constant?

Thanks for the reply, looks like we have similar problems. I've started to take supplements which seem to help, but I forget to take them and in the UK they cost lots of money because they are classed as sports supplements.....

I'm going to ask my doctor to check my levels and see if he can prescribe me something.

You are very correct here, the day I was asked to add up what I was drinking, I had inadvertently not carried something, so what I stated was double what I was drinking. Got that back under control real quick.

Admins,

So now we can't post about free samples anymore? What is going on around here? Those were very helpful links. That was one of the best parts of the site. C'mon man!

Abe

I wasn't advertising, I was helping others that asked for help.

Is this a new policy or just one that's being enforced now?

Now I'm just mad, I'll see y'all in a few days.

Since the helpful replies are being deleted, I can message them to you if you like.

Hi Andy, have you tried jelly babies and bananas, as well as starchy foods, because I have the same problem. My stoma advisor recommended this as well as eating salted crisps to keep your salt levels replenished. I hope this helps :>

Also, have you tried Dioralyte from your local pharmacy? :>

I got an email before for posting about discounts for ostomy things. I guess trying to pass on savings to others is wrong too. ‍

I would ask your doctor to check your levels. You might just need IV fluids to get the dehydration under control, and then drink the oral hydration and water, water, water, and add some juice.

What, why? Isn't that we are all here to help and support each other and give helpful tips and tricks... That's bull crap...

Did you know they make silicone gel and rings for those who cannot use hydrocolloid? They don't swell as much...

And the Brava strip paste is awesome. There's no drying time or messing with a tube. You can mold it any way you want, or if you need to make it flat, you can do that too. It helped me when my stoma was flat and inverted, and nothing worked. I still use it after I got my revision for that extra protection since I can't use rings.

If you don't have insurance, Medical Monks is a great place to get supplies.

Sorry, y'all. I wanted to see if it would be removed from what I wrote. I have been seeing stuff has been deleted or taken down about products.

I use "Liquid IV" powder in a bottle of water. It can be ordered from Amazon and Costco. Hopefully you have something similar in the U.K. It comes in various flavors and claims to be the equivalent of 3 bottles of water. This is based on the concept that the electrolytes, sodium, etc. in the water slows the passing of the fluid, thus letting your body absorb it more completely. I'll use a second serving in the evening if I plan to have an "Adult Beverage" or two. It's a fairly sound way to avoid dehydration. I turned my Father on to it as he had dehydration issues.

Hope that helps,

SharkFan

Bob has posted before about oral rehydration solution. https://www.meetanostomate.org/discussion-forum/viewtopic.php?t=13173

I know he makes his own and I feel like he also mentioned how to find some recipes for it.. Otherwise, I second both Liquid IV and Drip Drop which others have already mentioned - although I'm not sure about availability/names in the UK.

I try to eat small meals often and it seems to hold more in. I still feel like crap unless I have a Gatorade every day. It's a lot of hydration packs now. Liquid IV and some others. Try that.

Hiya!! My bag starts spilling about 48 ounces at night, starting around 6pm-7pm. If I take too much Imodium, I obstruct. I find that coconut water has helped me the most, and unfortunately, a lot of carbs to try to bulk. Fruits, tomatoes, and cucumbers will pour out of you. I usually eat a high-fiber cereal, and during the day, I am great, but yes, the exhaustion and dehydration get old!!
Blessings!

Pascale

Thank you so much for that information!

I have found Drip Drop to be the best for staying hydrated. I drink 2-3 packets a day.
Also, potato chips are a great way to thicken output and get some extra needed salt.

Hi Andy

I'm a walker so I get dehydrated fairly quickly. I now drink coconut water which has all the salt and sugars in. Also, I have bought some tablets from Tesco pharmacy called ORS hydration tablets. They really help. I get headaches if I don't drink enough. I take a big pint glass of sugary squash to bed and drink it throughout the night. Don't use the no sugar ones though.

Hope this helps.

Hello Andy, I too was discharged with a high output ileostomy after having had a pouch reversal. I'm not sure of your situation, but I too was prescribed mountainous amounts of loperamide and a litre of St Mark's mix as well as a litre of "other" liquids. I found though that this settled down over several months, so don't despair, it may improve as your body adapts to the new situation. I now take loperamide only when I need it. We are all given lots of advice about food and avoiding blockages and slowing things down, but a simple piece of advice is often overlooked. That is to sip drinks and not glug them down too fast. Sadly, without a colon, the water can't be absorbed and is dumped into the pouch.

As to the horrible feeling, hmm, you should check with your hospital, but I have found I can feel bunged up if I take too much loperamide, so maybe check with your nurse/doctor to see if it could be titrated to match your situation better. I still take an ORS tablet occasionally. I see sometimes people are rightly concerned about taking too much sugar, but with an ORS, the sugar (glucose) is part of the mechanism to get the ileum to absorb the electrolytes, not to improve taste.

Definitely been my number one health issue since losing my colon. I suggest looking into DripDrop. Imodium and Lomotil have a minimal effect on me and I have taken both at different frequency and times and combinations. I have had 14 surgeries since I've beginning and been on narcotics for the pain only to learn I'd by far the most successful to control my high output.

I use a product called Drip Drop. It is a powder that you mix with water.

Try a product called DripDrop. My gastroenterologist suggested it. I get it over the counter.

The caffeine in coffee (and teas also) acts as a diuretic. Decaf coffee/teas and herbal teas should be okay.
Maybe try 1/2 caf coffee - still get a caffeine 'bump' but less of a diuretic effect.