Success with Homemade Isotonic Drink for High Output Ileostomy

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Sadostomate

2 years ago today, I nearly died in Sx- 3rd ileo surgery in 40 years. Now, I have high output. I was losing tons of weight despite eating for 2 grown men, drinking tons of water for hydration, and weight all over from 100-106. 3 weeks starting making my own isotonic drink packets, I gained 8 lbs the first week and am now 111-114. I haven't seen those numbers in 2 years. If you are high output, follow the diet plan for SBS. It changed my life.

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w30bob

Roger that Sado..........I've been explaining the hydration thing and hyper/hypo/isotonic to folks on here for years. Pretty simple concept that makes perfect sense.........once you understand how hydration works........and how it now works without your colon. But otherwise hard for folks to warp their heads around the fact that drinking water can actually dehydrate you if you don't have the right plumbing to absorb it. Glad to hear you're getting better!!

;O)

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Bob 48

I used to follow that diet to help thicken stools for UC and even more so after J pouch surgery, but a few years after J pouch surgery, I was diagnosed with type 1 diabetes. I have a permanent ileostomy now and wish I could eat those thickening foods again and do to an extent, but not as much as I would like. I have found Metamucil powder 30 minutes before a meal helps me quite a bit. I also don't drink much, if anything, around meal times, pretty similar to what I did when I had J pouch. How much sugar do you put in your isotonic mix?

Bob 48

Also, fortunately, I was able to gain all my weight back now, 5 months post-op. I was worried because I went from 205 to 164 or so after surgery. I'm right at 200 now and trying to gain back lower body muscle. Surgery, pelvic inflammation, and osteomyelitis in lower vertebrae took a lot of strength in the lower body from me.

Celia1552

Thank you for posting this! I was told to keep hydrated....I ended up in the hospital for a week when I thought I might have a blockage and drank quite a lot of plain water. This was two months after my surgery. No blockage but electrolytes way out of balance. Upon release, my nurse practitioner I was seeing at the time said drink no more than 6 glasses of water a day. Period. I have adrenal issues so I have had to salt my food even before my surgeries.... No one ever gave this good advice that I've found here...Changing up what I'm doing and will be making my own solution....(no longer seeing that NP thank goodness)...thank you again! And Bob 48 has some really good advice in his past posts as does Bob 30....( Had to edit as I was reading a lot in the middle of the night thanks to adrenal issues thinking 2 am is rise and shine time...not!) Both gentlemen have additional threads of conversations that will make you laugh till you have tears in your eyes!

 
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w30bob
Reply to Bob 48

Hi Bob,

There's a number of oral rehydration solution recipes out there, all slightly different, and the World Health Organization has revised their ORS recipe too. But a good start is 20 grams of sugar per liter (which is around 4 level teaspoons) and 1/2 to 3/4 teaspoon of salt per liter. Everyone is a bit different, so a little experimentation will go a long way. If it tastes too salty initially, you can back off the salt to a level you can tolerate and slowly increase it over time until you get to the 1/2 to 3/4 tsp. Your taste buds will acclimate over time if you sneak up on it, so if you don't like the taste of your ORS full strength......don't give up.......just tone down the salt (or sugar) and work your way up.

I've done a lot of experimenting over the years and find that 20g sugar and 1/2 tsp salt is ideal for me. The easiest way to check what works best is to drink it when your bowels are empty......like real early in the morning.......and see how much, if any, makes it to your bag. I typically drink a liter plus at 2:30am each night and it all gets absorbed.

Also, be cognizant of what you're eating if you use ORS during the daytime. Since you want the concentration of what's in your bowels to be 20g of sugar per liter.........if you just ate a jelly donut........you already have a lot of sugar hitting your bowels in a few minutes......so you can go light on the sugar. Don't drive yourself nuts thinking about what you've eaten and how to adjust your ORS to compensate, but be aware of what you're doing. Eating a bunch of sugar before drinking an ORS will just turn it into a hypertonic fluid, which will end up pulling water from your body into your bowels to try to dilute it. Another trick is to mix a little fat with your ORS. Of course it depends on what you made your ORS out of, but a bit of milk added to it will slow the rate your stomach empties it into your small bowel, which gives your bowels a bit more time to absorb more of it. Once you understand how digestion works, you can use it to your advantage, like in situations like this.

;O)

w30bob
Reply to Bob 48

Hi Bob,

The magic number is 20 grams of sugar per liter... or 4 level teaspoons. Combined, of course, with 1/2 to 3/4 teaspoon of salt and you're good to go! Another trick is to put some fat in your drink if you can... like milk. Fat causes the stomach to slow the rate it empties into the small bowel, so your intestines have more time to absorb and hydrate.

;O)

Sadostomate
Reply to Bob 48

In 1 liter (4.5 cups) 2 tablespoons sugar; 1/2 teaspoons table salt

I add a powdered on-the-go drink mix (dozen of flavors to keep it different) and drink 1-2 liters a day. I haven't experienced severe leg and hand cramps since I started - total change - and no one mentioned this to me for 2 years.

Sadostomate
Reply to w30bob

I just wish someone had told me this - not my surgeon, ostomy nurse, or gastro doc. I had to find out from a book on adult SBS.

We need to get more people to know this.

w30bob
Reply to Sadostomate

Hi Sad,

Yeah, agree. I've recommended many times that people on here read that book, and I've even posted all the chapters on here at least twice. But you can only lead a horse to water... you can't make 'em drink. No pun intended.

But you're right, there is zero effort by our medical professionals to provide us with the correct info we need as ostomates. I've found the whole subject of ostomies falls between the cracks of medical professional specialties. Dermatology is clueless, surgeons only know how to cut and sew things back together, and Gastroenterologists only deal with internal bowel issues. So... as soon as you mention "ostomy" you're directed to the ostomy nurse, who is usually well versed in wound care. And while they do have a lot of experience with ostomy problems, they don't know it all.

The whole subject of diet, supplementation, and hydration is almost never mentioned to newly made ostomates. I was lucky in a weird twisted way, in that while on TPN, my home infusion dietician recommended Carol's book to me, and as you know... it was a game changer. But had it not been for her recommendation, I would have been in pretty deep shit. Yeah, pun intended that time.

Ever since I got on here, some 8 years ago, I've said this site needed 'stickies' where we can put information that everyone can reference, but this site just doesn't support that. So info just disappears into the ether when folks stop reading that post. There's a lot of info relevant to ostomates that could be saved and readily available, especially to newbies... but to no avail. Such is life, I guess.

;O)

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