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Posted 1/25/2015 4:01 PM (GMT 0)
After almost two years post surgery and excellent adaptation to ileostomy and hydration issues and high energy activity I suddenly am unable to keep hydrated without almost daily infusions. I have been on Imodium, from 1 to 6 per day, and am now unable to tolerate even 2 per day without becoming blocked. My output in bag is totally liquid causing dehydration. I have been hospitalized twice in the past 6 weeks and am only able to function with regular outpatient infusions. Doctor prescribed Prevalite powder as an alternative to Imodium, which has been ineffective. I am at my wit's end and am wondering if there is anyone out there who has experienced anything similar and found a way to counter chronic dehydration?
Posted 1/25/2015 5:00 PM (GMT 0)
Dehydration is a constant problem for ileostomates, but I am usually able to control it with Immodium and Pedialyte or another product to hydrate. Even with that, I occasionally just can't keep up and need an IV. It happens to all of us. I don't know why you are now having more problems than usual. Has your diet or anything else changed?

That happened to me once and it turned out that I had giardia. Have you been checked for parasites?

Scott
Posted 1/25/2015 7:00 PM (GMT 0)
I had to be hospitalized 4 times after my surgery with dehydration and kidney failure, sodium and potassium were low and crazy. Eventually my body figured it out, and it stopped. I take Lomotil, a prescription medication to slow output, and Questran when needed to thicken the output. The Questran is a powder that you add to water, and it is prescription, too. I use Immodium where I have "diarrhea", but only before I go to bed.

Drink electrolytes. Gatorade, or products like it, pickle juice has electrolytes and so does V-8 juice. You can use Google to find homemade electrolyte solutions you can make for cheap. Put salt on your food. Eat things that thicken your output, like rice or mashed potatoes, or whatever works for you.

I guess that sometimes, even after all we do, our bodies are just going to do what they want to do.
I hope this resolves for you, dehydration and IV's are certainly not fun! Good luck NanLHF!
Posted 1/25/2015 7:18 PM (GMT 0)
Thank you for your response. I will make use of your suggestions immediately. There is nothing like advice from someone who has been there! All medical personnel are sparking theoretically only. I see the foctor tomorrow in the infusion lab and will try to get prescription for items you suggest. Hope you are doing well now!
Posted 1/25/2015 9:11 PM (GMT 0)
My weekly shopping list now includes Gatorade 2 which the surgeon and the stoma nurse both said I should drink after every meal to help keep dehydration from occurring. I'm also taking Immodium before every meal and monitoring my output with a measuring container they sent me home from the hospital with. My goal is to stay below 1 liter in output everyday.
Posted 1/25/2015 10:33 PM (GMT 0)
Thank you for your response! I don't know why, but immodium seems to cause stool output to be too firm, causing blockage if I take more than one per day and ineffective with one. This phenomenon just started the last six weeks. I appreciate your suggestions and will try the Gatorade after meals and also measuring output. Nan, 2 year post surgery, complete nonreversible ostomy.
Posted 1/26/2015 1:32 AM (GMT 0)
Could you have adhesions I wonder? It sounds like your body is trying to clear a blockage to me and this is why the immodium causes it to get worse. It sounds suspicious that this is just suddenly appearing in the past 6 weeks.

When I had a blockage from watermelon, I had a gallon of green water output in 24 hours after the blockage resolved. If I even have a partial blockage, my body will start to try to flood it out with copious amounts of fluids coming out of my stoma.

I have found mixing pedialyte with Gatorade is very tolerable and tastes OK. I also eat plain lays potato chips or pretzels with the Gatorade/pedialyte with great results.

Good luck and hang in there.
Posted 1/26/2015 2:53 AM (GMT 0)
If you don't mind the taste, and it really isn't that bad....drink plain Pedialyte instead of Gatorade or Gatorade 2. It has way less sugars/artificial sweeteners, coloring and generally yucky unnatural stuff. You can also drink coconut water for electrolytes and find recipes online to make your own hydration solutions from water, fresh lemon/orange juice, honey and specific types of salt (not table salt). You could also flavor the plain Pedialyte with fresh squeezed citrus juice. Good luck getting this under control!
Posted 1/26/2015 8:32 PM (GMT 0)
Hey there, I've had my Ileo for over a year, I find personally the gatorades and juices in general are so full of sugar they actually can somewhat lead to dehydration atleast for me by increasing my output and making it very watery, as sugar in general does that for me.

I havent talked to any doctors about this, but personally whenever I think im close to dehydrated and actually on a semi regular basis now I gulp down some pickle juice, apparently a lot of sports stars actually regularly consume the stuff after intense sports events or workouts.(Eating the raw pickles them selves makes my output more watery, so be warned.) :D

http://www.cbssports.com/nba/writer/ken-berger/24582318/one-way-for-lebron-james-and-nba-players-to-hydrate----pickle-juice

As far as output goes, I personally find potatoes thicken me up, from chips, to oven baked fries, the best Ive found has been wendys french fries, maybe try some sometime in some form or another, although everones different and maybe my body just handles them better.

Post Edited (Virdent) : 1/26/2015 1:35:16 PM (GMT-7)

Posted 1/26/2015 9:32 PM (GMT 0)

answers4me2 said...
Could you have adhesions I wonder? It sounds like your body is trying to clear a blockage to me and this is why the immodium causes it to get worse. It sounds suspicious that this is just suddenly appearing in the past 6 weeks.

Agreed with this.

I would try to find out what's changed after nearly 2 years. Or, rather, get your doctors to do their job and find out what's changed. Just treating the dehydration isn't good enough, imo.
Posted 1/27/2015 8:25 PM (GMT 0)
I'm fortunate in that my ileo was temporary. However, even about a year and a half after I was reconnected, I still had to worry about proper hydration. I visited my sister in Florida and the combination of too much wine coupled with warm weather did me in. When I got back home, I had to go to the ER with intense stomach pain and they had to hook me up to the IV to get rehydrated. I learned my lesson. I've traveled a lot in Southeast Asia the last two years and I don't have any alcohol and try to drink twice the amount of fluids I normally take. So, here I drink anywhere between 10 and 12 glasses of water per day. Over there, it's more like the equivalent of 20 glasses. And, just to be sure that sneaky little bugs don't stay in my gut, I make sure I either eat a cup of yogurt or have a probiotic drink each day.
Posted 1/28/2015 7:12 PM (GMT 0)
NanLHF, are you having any pain at any time and if so does it get worse or better when the output is thicker or more liquid. I had a stricture removed again last year and before it obstructed each time, which was happening twice a week, the output would be very liquid and pour out like water, then when it got to the obstruction it would be so thick.
Posted 1/29/2015 1:33 AM (GMT 0)
Thanks for your response. I don't have pain, except when output is blocked and I am really bloated. Was your stricture discovered by a GI exam? Nan
Posted 1/29/2015 1:01 PM (GMT 0)
No, I knew it was there after I had obstruction 7 years ago and they could see result of it on plain x-ray. In other words can see the huge loop of dilated bowel before it. Had MRI in June last year with contrast so they could try and see how long stricture was but it was so tight, only 2mm wide that contrast wouldn't go beyond it properly so they could only guess how far away it was from stoma, which was about 10 inches. I didn't have a GI for 3 years until last October as my old one retired and my old hospital said they had far too many people needing to see a GI so unless I had active CD symptoms I couldn't be seen and I had had so many horrific experiences there I didn't feel save there, it has horrendous reputation where I live but is the closest so don't always get a choice. So when stricture really began causing obstructions more than once a fortnight I found a new surgeon at a different hospital and she was fantastic and the hospital is brand new and amazing so all my treatment for everything has been transferred there even though my own health authority area aren't too happy.
Posted 1/30/2015 8:14 PM (GMT 0)
might try coconut water, better than powerade and most brands are all natural an loaded with potassium..
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