my biggest problem with chronic refractory pouchitis is that I get dehydrated really fast, to the point where I need to get IV fluids in order to function. I’ve been untreated since January (going on 4 months) while I work through the alicaforsen trial. But either the drug isn’t working or I’m getting placebo, and I’m just getting sicker. When pouchitis symptoms are under control with antibiotics, I’ve gone for IV hydration about 3-4 times per year. Right now I can barely make it a week.

i don’t read about this on this forum at all—do others go through this? It’s just part of my routine now but I can’t believe I’m the only j-poucher who goes through this.

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That sounds very hard, Karenchase. Do you use a good oral rehydration solution to help absorb as much fluid as possible? The glucose in ORS seems to help pull in more water.

There are hydration products available that do not contain all the sugar and food coloring that come in products like gatorade and powerade.  My favorite is NUUN electrolyte tabs.  They come in tab form and go into plain water.  I also have clear fluid that I add to water for when I need hydration right away.  It is Lytebalance electrolyte concentrate.  There are other versions as well as the world health organization WHO formula powder packets. Some products are listed for helping with hangovers - which are usually when people are dehydrated.  

I have ordered these from NUUN directly, amazon and ebay plus some are in my local food stores.  The ones in local retail stores cost more where I live.

I use to need to get iV fluids as well.

Karen - i have been making my own electrolyte solution.   I got the recipe from the website   on this website there are several recipes you can follow, and they are entitled "adrenal cocktail". They work better than Gatorade. The recipe I follow is 4 oz of water, 1/2 teaspoon of cream of tartar (for potassium), 1/4 tsp sea salt,  and 1/8 tsp of real food vitamin C.

 I just chug it because it's not a sweet trading drink,  ha ha. It's kind of salty and sour, but it works.  I make one in the morning and one in the afternoon. But you could do it three or four times a day if you need it.

Last edited by J.T.

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