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TMC
Regular Member


Date Joined Jul 2010
Total Posts : 88
   Posted 7/10/2010 7:29 PM (GMT -6)   
I am a new member and am eager to learn from others' experiences.

I had toxic megacolon last year. After three emergency surgeries in August of 2009, I ended up with a total colectomy and ileostomy. I continue to empty my bag 8 to 10 times a day, but I often have diarrhea and end up going 15 or so x a day. Dehydration is a constant battle. I can't seem to identify dietary habits that affect this - I eat the same 10 things (bananas, chicken, rice, etc) and one day it is fine and the next day I can't leave the house because I am constantly emptying my bag. Has this been your expericence? Any suggestions?

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/10/2010 8:00 PM (GMT -6)   
have you tried immodium? or something like that?
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!


TMC
Regular Member


Date Joined Jul 2010
Total Posts : 88
   Posted 7/10/2010 8:14 PM (GMT -6)   
I have tried it and it helps sometimes, but only if I take 2 or 3. I am a little leery of taking so much Immodium every day, but perhaps without a colon, it is what I will need to do.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 7/10/2010 8:28 PM (GMT -6)   
TMC,

Do you drink a lot of sugary drinks like gator ade or drinks with fake sugars like sucrose, sucralose, fructose, etc?

Also do you take in a LOT of salt. (We are supposed to take in some to make up for that we lose) but too much makes us lose more effluent.

These 2 things are things I have to watch out for. Have you tried just going for an IV. I find it a real pick me up. Good luck.

Rosemary

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 7/10/2010 8:35 PM (GMT -6)   
I have had my ileostomy for almost 3 weeks now and it has been a constant battle to try and figure out what to eat, how much, how often, etc. I have found that I can thicken my output by eating small, frequent meals. My diet includes white bread, biscuits, rice, tender chicken, turkey sandwiches on white bread, yogurt, pudding, soup, saltines, cheese, and pretzels....

My doctor also gave me the okay to take immodium after every meal if I continued to have issues with too much output....so, I take an immodium if the output is pure liquid and just won't stop. I also drink gatorade and water to ward off dehydration. I was drinking only gatorade, but I found that I still felt thirsty, so on advice from many ostomates that post here, have started drinking more water than gatorade and my thirst has been better quenched. I also drink sweet tea, fruit juices, and pickle juice when I am craving it...

Did you have problems with constipation? Is that what caused the magacolon?

TMC
Regular Member


Date Joined Jul 2010
Total Posts : 88
   Posted 7/10/2010 8:55 PM (GMT -6)   
Thanks for the great tips. I do drink Gatorade every day, lots of water and juice as well as a powdered glucose/electrolyte supplement which I add to lemonade. I just get discouraged because I seem to spend my life trying to stay hydrated! Ihaven't tried the IV. Do its effects last for long?

No, I never had any problems earlier. The toxic megacolon was caused by a parasitic infection that I had apparently had for many years without knowing.

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 7/10/2010 9:06 PM (GMT -6)   
TMC, does your output ever thicken up? Because my output varies from liquid to pudding type consistency. If I go without food for too many hours, then my output will turn into lots of green liquid and will fill the bag over and over. UGH
Diagnosed with colonic inertia, anismus, rectocele, and intussusecption

Surgery June 21, 2010-subtotal colectomy, rectopexy, and a temporary loop ileostomy

Take down-TBA


TMC
Regular Member


Date Joined Jul 2010
Total Posts : 88
   Posted 7/10/2010 9:12 PM (GMT -6)   
My output also varies from liquid to pudding, but I have had a hard time relating it to what or when I eat. I may start to keep a journal.

Without an ileocecal valve, things flow pretty freely and I also don't digest many things at all - they just pass whole - so I need to be very careful about what I eat.

pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 7/10/2010 9:26 PM (GMT -6)   
I had serious issues with this and was hospitalized more times than I can even count. I was taking 2 immodium every 4-6 hours or something like that. I take Lomotil every 6 hours now. I tried every medication they could think of and nothing really helped, nor did it matter what I ate. It never got thicker and I had constant output. I had to be on an IV at home and even then still ended up being hospitalized frequently
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma; 12/30/09 Takedown too soon; RV fistula;1/9/10 Second Ileostomy Surgery;
1/25/10 Stoma Revision Surgery; 3/30/10 Takedown again; 6/9/10 Scope and Biopsy--Diagnosed with Crohns Disease (maybe...)
Tried gluten free and dairy free with no noticeable improvement; Was on TPN and IV fluids 2/10-6/10. Currently:Prednisone 40 mg, Culturelle, D, B12, Iron, Prenatal vitamin, Lomotil, Lortab, Humira, Rowasa


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/10/2010 11:00 PM (GMT -6)   
the immodium shouldnt hurt you
but the gatorade might be speeding your output up, all the sugar and such.

Someone gave the suggestion to put some salt in your water, so that you absorb it better.
my theory is, i eat lots of popcorn and dump on the salt!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!


sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 7/11/2010 2:17 AM (GMT -6)   
I have an ileo and dehydration is my constant battle. Just 2 days ago, I wound up in the ER AGAIN for 2 liters of fluid. Had just gotten fluid BOTH the previous 2 Thursdays. I can't keep up. The abdominal cramping and weakness eventually get too much and then I get incoherent. sigh. . .

I take codeine-30 mgs up to 4 times a day-- to thicken the output. Some days, I only need 2 tablets and some days, just immodium.

It took about 6 months for me to start really seeing thicker output. There aren't many foods that thicken my output: white rice, potatoes (NOT sweet potatoes), french fries (not spicy curl fries), peanut butter, potato chips (baked or regular), bread and honey, saltines. I have not tried popcorn--I'm too scared.

Items that help with my dehydration: chicken broth, popsicles, powerade, v8, water with fruit (let some grapefruit or oranges sit in the water in the fridge), jello with canned fruit, lemon ice, sorbet without pulp or seeds, smoothie (juice, sorbet, ice, fruit, agave nector, little yogurt).

You're not alone. Best of luck!!
25 years with Crohn's/colitis; fistulizing crohn's; ileostomy and proctocolectomy; propranolol, xanax, procrit, ursodiol; anemia of chronic disease, PSC, kidney issues from crohn's as well


poohbagCD
New Member


Date Joined May 2009
Total Posts : 4
   Posted 7/11/2010 5:25 AM (GMT -6)   
Tmc' I'm courious about your paractic infestation.I've been experencing some kind myself,whatever i have digs under skin on my head.Doctors don't seem to have any answers what the heck is under my skin.What i have looks like hair but thicker and they have little black dots at the end.Back to your other question about dehyderation,I have chrohns and fistulas which caused me to have a bag now for some time,I rarely get to sleep through the night without having to dump my bag a whole lot.I mean a whole lot.I go up to 70-80 times a night when it gets bad.I also have alot of bobo's because of the out put.I've tried not drinking and eating hours before i try to sleep but still put out alot any way.Stoma nurses have no answer to help,unfortunatley they dont have alot of pepole with my problem so there baffled.Marshmello sometimes help.I also try dehderated bannanas and other dehyderated fruit to help make it less runny,it sometimes helps.I dont really have any good suggestions but just to let you know your not alone with this problem.I've had a bag for about10 years or more,had this problem from the begining so you get a little used to it after a while you just have to adapt the best you can.Good luck.....I drink as much as i can and pray alot.........
CD


TMC
Regular Member


Date Joined Jul 2010
Total Posts : 88
   Posted 7/11/2010 9:32 AM (GMT -6)   
The parasites were amoeba and the only symptoms were intestinal. Yours certainly sounds different, poohbag.

I appreciate all of the great advice, and it certainly is nice not to feel alone with all of this. Thanks.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/11/2010 9:48 AM (GMT -6)   
poohbag-do you possibly have ingrown hairs?
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!


ducridr
Regular Member


Date Joined Apr 2008
Total Posts : 139
   Posted 7/11/2010 11:32 AM (GMT -6)   
Take a look at what's in the juices and other things that you are eating/drinking. A lot of juices and popsicles contain apple and grape juice as their primary ingredients for filler and also may contain fake sugars. Apple and grape juice are diuretics and can lead to excessive output. I learned the hard way that I had to read every label because what looked like a wonderful, healthy choice was actually increasing my output and leading to dehydration. I drink G2 (less sugar and the powder packets are easy to carry) all day long (usually made with more water than is in the instructions) along with water, milk, caffeine free tea (caffeine and I don't get along), etc. However, I know that many people have recommended Vitalyte, Pedialyte, and coconut milk as good beverages to help combat dehydration.
Ducridr - 36 - female

Diagnosed w/ severe pancolitis 11/20/2007
Asacol - 6 (400mg) 2x/day, Xifaxin 2 (200mg) 2x/day, Prednisone 15 mg (started at 40mg Nov 08 - off June 09), multi-vitamin, calcium and vit d supplement, potassium supplement, B-12 supplement, Junel FE (BCP),metamucil capsule (1/day) Coumadin (for blood clot) 5mg/day, 1st Remicade treatment 2/4/2009, 2nd - 2/18/09. Currently getting Remicade every 4 weeks.

J-Pouch surgery #1 of 3 on 8/21/2009!!!
Surgery #2 on 1/4/2010
Surgery #3 on 3/23/2010


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 7/12/2010 4:21 AM (GMT -6)   
Welcome TMC,

I notice that eating oatmeal for breakfast always thickens my output. Wheat toast with peanut butter and bananas does, too. Have you tried Metamucil or some other type of fiber?

When I had chronic diarrhea with Crohn's, my gastroenterologist told me that I could take 8 Imodium a day, so you don't need to worry about taking too much of it.

I'm wondering if the lemonade might be causing liquid output. There's something about lemonade that does that to me. Maybe the tartness?

Also, there are gel tabs that you can put into the pouch to turn it from liquid to a more solid consistency. One brand is called Gel-X.

Take care, and let us know what works for you!

:-) Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

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