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Very high ileostomy output and nothing works!

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Posted 6/30/2015 12:56 AM (GMT 0)
I'm new to joining this forum, but I've been reading it for a couple of years now. I've had ulcerative colitis since I was 16, and just celebrated my 30th birthday in the hospital :-/ Anyways I had my colon removed on March 24th and was doing great after the bowel obstruction was taken care of. Then on May 8th I had a second surgery to construct my J-pouch. Since then I have been miserable. I got an infection around my stoma, my electrolytes are out of balance, and I'm constantly dehydrated, going to the hospital 3 times in a month. I'm emptying my bag upwards of 15 times a day, with output 2 liters and up daily. I'm not drinking coffee or tea, only Gatorade and water plus a small amount of cranberry juice to take my probiotic Enteragam. I've tried Imodium and lomotil, and eating all the thickening foods plus rice crispy treats. My surgeon isn't worried, I think he doesn't believe me. My GI doctor wrote me a prescription for tincture of opium but I can't get it filled anywhere. I was supposed to have the reversal surgery this week, but I had a picc line inserted 3 weeks ago that caused a massive blood clot in my arm. Still waiting for the surgeon and hematologist to make a descion on when to operate, meanwhile I'm losing my mind and can't leave my house very often. HELP!!!

Slade in Charlotte
Posted 6/30/2015 1:09 AM (GMT 0)
Coconut water or, better still, an oral rehydration solution drink would be better for you than Gatorade. You can make the latter for pennies (or cents).

www.wikihow.com/Make-an-Oral-Rehydration-Salts-Drink-(ORS)

Can't help with anything else I'm afraid :-/
Posted 6/30/2015 1:17 AM (GMT 0)
Thanks :D I'll try the coconut water.
Posted 6/30/2015 1:33 AM (GMT 0)
The loop ileo you have right now can be very tough to manage for some people. Mine ran like a faucet 24/7. It was horrible. I couldn't leave the house much either. Sorry you're having a tough time. Everything improved for me after my reversal surgery. Hang in there.....it will get better!
Posted 6/30/2015 3:24 AM (GMT 0)
Thank you Marianne, that gives me hope. :D
Posted 6/30/2015 3:44 AM (GMT 0)
The loop is a huge pain, I had a 3 step so I experienced a normal end ileo, the 2nd stage loop ileo and then the takedown with the jpouch connection and the loop ileo is not very fun at all and output is always a lot higher.

Are you on any dose of immoidum or lomotil since you can't find anyone to fill your tincture of opium prescription? I'm no expert but I don't think the probiotic will be benefiting you much at the moment, you may even wanna lay off it for a week and see it's not hurting more than it's helping.

In the end just stick in there, it's rough but you will get through this period and things will start to look brighter after your takedown!
Posted 6/30/2015 4:01 AM (GMT 0)
I had a very similar experience with my loop, none of the meds slowed it down including the tincture of opium. I just waited it out but as time went on things started to slow down and then it was time for my takedown. I finally gave in and used a magnum bag with a belt so I didn't have to empty as much. Right after step-2 I was putting out about 5 liters a day but before my takedown it was down to about 1.5 liters a day.

I had the same problem finding Tincture of Opium, none of the national pharmacies will carry it but I did find it in a small pharmacy near a cancer hospital (Sloan Kettering). But like I said it really didn't do much for me but it was worth a try. I'd try calling around to the local pharmacies and asking the head pharmacist if they have it or can order it for you.

Have you tried using fiber supplements? That was the other thing they had me on but the loop was brutal, I lost about 30 lbs in about 3 months. Now that I am reconnected my pouch puts out very little, I only have to empty 3-4 times a day.
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