Share Facebook
Crohn's Disease Forum » Surgery » Stoma Subforum » Nothing stops the massive diarrhea


09-28-2013, 10:00 AM   #1
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
Nothing stops the massive diarrhea

I am taking 3 anti-diarrheal meds and eating a bulking diet and I still have massive output. I am so frustrated these meds are strong but seem to do nothing. I'm so dehydrated I'm afraid ill end up in the ER. I'm drinking Gatorade by the ton and eating lots of salty foods and potassium rich ones.

I don't know what to do but am seeing doctor soon. Hopefully there are other meds that are an option.
09-28-2013, 10:28 AM   #2
If*
Senior Member
 
Join Date: Apr 2013
Hello, so sorry you are having a tough time. Im not too sure if this will help but here it goes. I noticed that beverages containing sugar make D much worse ~ as do foods. Anything that is a difficult to break down carbohydrate seemed to cause more D. Like fruit juices, soda, even some sports drinks. I know you are trying to replace fluids but some feel to make things worse. I went through similar after a abscess/fistula repair. What I found to help after tons of reading was organic barley green. Within a few days I was able to gain some control. It soothed my guts and slowed the D. If you want to know more please feel free to message me. I would be happy to share my experience with you.

Hang in there. I hope you feel better!
09-28-2013, 11:12 AM   #3
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
Thanks I drink the low sugar Gatorade but don't think I'm drinking or eating too much sugar. But even so the 3 drugs should help. No clue what's going on.
09-30-2013, 09:49 PM   #4
annawato
Moderator
 
annawato's Avatar
 
Join Date: Apr 2012
Location: sydney, New South Wales, Australia

My Support Groups:
Antid's did nothing for me, the only thing to slow my output a little was amitriptyline. And apples. also I was told to water down sports drinks 50/50. The best drink to be absorbed by the bowel is 1 litre water, 8 teaspoons sugar, 1 teaspoon salt and juice of a citrus fruit.
Other than that i think its just time as the bowel adapts to having to absorb fluid higher up. I know I have more output the more I drink so its getting the balance between drinking enough to not dehydrate and not drinking too much.
Sorry you having to put up with this. I'm in the same situation and now I just think its normal for me. I keep an eye out for dehydration signs but they are fairly rare now.
Tomato juice is a good one if you are sick of sweet drinks too.
__________________
Anna

you name it, i've tried and failed it! currently on- waiting to see whats new and reducing pred
temp. ileostomy reversed feb 2011, new ileostomy, nov 2012
4 resections plus removal of adhesions etc, recurrent intestinal abscesses
lyme disease, depression, sacroileitis, chronic pain and......Crohn's..........
09-30-2013, 10:11 PM   #5
PsychoJane
Moderator
 
PsychoJane's Avatar
 
Join Date: Mar 2011
Location: Quebec

My Support Groups:
For me, gatorade/powerade, and things like that are not really having a great effect on me. I prefer the hydration recipe that Anna shared. This one won't make me flush myself as opposed to commercial drinks that are not helping me with the diarrhea aspect.

Time... I think you will need some more for your bowel to adapt (I'm guessing at the least).

Normally, puree is helping me a lot. Any kind of puree. It is a double edged sword though... The more you eat them, the more you have to empty.... but it get everything thicker when it comes to me. I say that based on, a fresh apple will thicken stuff but never as much as good old apple sauce for instance.

I find potatoes , sweet potatoes, squashes in general, apple, banana. Pureed, to be my best allies. These with rice (or stuff with gluten but I avoid these) helps me.

Budwig mixes are really good for that too. I don't know if you feel you can handle these as it is clearly not near to a low fiber food. I don't know if you are familiar with this. Essentially, mashed banana, cottage cheese (or soy soft product), honey, fresh lemon juice and a mix of sunflower seeds, flax seed, millet, oat groats, brown rice (all raw but completely blended in a coffee mixer). This, really, get things thick.

Would you describe your output as literally watery? I like to use the "flock flock" noise in the bag as the indicator of what I mean... If it may make any sense to someone who reads it xD?
__________________
Diagnosed UC 1999 then refractory CD.
Past Meds: Prednisone, asacol, cyclosporine, cyclophosphamide, mp6, Humira

Currently taking: Omega-3, D-3, med-free for the time being.
~~Oh! n sorry if what I write seems strange at times, English is not my main language!~~

You'd like to chat and feel facebook would ease this point,
send me a private message and i'll do so =)
09-30-2013, 10:49 PM   #6
Dragonfly72
Senior Member
 
Dragonfly72's Avatar
 
Join Date: Apr 2013
Location: Lee, New Hampshire

My Support Groups:
I wonder if you could try a teaspoon or 2 of something like Metamucil, to help bulk you up a bit?! It is just a thought, stay on a brat diet too. Apples, toast, bananas etc.

Will be sending you prayers and healing thoughts! Let us know how you get along!

M
09-30-2013, 11:03 PM   #7
annawato
Moderator
 
annawato's Avatar
 
Join Date: Apr 2012
Location: sydney, New South Wales, Australia

My Support Groups:
Yes! I had forgotten about metamucil. That is supposed to thicken output and was recommended to me by my last surgeon. Anything that bulks up poop will help thicken so any soluble fibre helps.
11-09-2013, 01:42 AM   #8
Ang71
 
Ang71's Avatar
 
Join Date: Jul 2013
Location: Gold Coast, Queensland, Australia

My Support Groups:
I'm in the same boat I'm on 12 emodium tables a day, 2 glasses of medamucil a day and a codeine tablet at night, 2 somac a day still my output is like water. I use preform pouch thickeners to bulk up the watery output in my bag..
Breakfast I have toast. I eat potatoes mashed and I have chicken & veggie soup with salt added and it helps replace water I have lost.. I drink water with a dash of fruit juice in it surgeons told me to do it.. I just learn to live with the water output now...

My GI gave me this recipe the other day it is:
20g (6 level 5ml spoonfuls) glucose
2.5g (one heaped 2.5ml spoonful) of sodium bicarbonate
3.5g (one level 5ml spoonful) salt
Dissolve in 1 litre of tap water and refrigerate. Drink the whole amount through out the day you can have up to 2-3 litres a day. You can add a small amount of fruit juice, lemon or lime to it as we'll and sip it through a straw. If you have trouble drinking it the bicarbonate can be replaced with sodium citrate..



Sent from my iPad using Tapatalk
11-09-2013, 09:36 AM   #9
UnXmas
Banned
 
Join Date: Oct 2012

My Support Groups:
I don't have this problem, but as I'm fresh out of hospital from my ileostomy surgery, I have a bunch of leaflets on all aspects of stomas at the moment. Here's the basics from my guide on high output (they define it as emptying the bag more than five times a day):

Low fibre diet: interesting as this seems to contradict some of the advice on this thread - it says "[a low fibre diet] will reduce the amount of bulk moving through your bowel, helping to rest it."

Don't drink with meals (or just before or just after).

Don't drink more than 1500ml of liquid a day.

Try taking loperamide and/or codeine

Foods that thicken output: White bread; Jelly cubes [jello in the US I think you call it]; marshmallows, pasta, bananas, potatoes, jelly babies, biscuits/cakes, rice/rice pudding, smooth peanut butter.

Eat extra salt as a high output means you're not getting as much, and check for signs of dehydration that may required medical attention.

To keep a low fibre diet, eat white bread, cereals, etc. rather than wholemeal; avoid fruit and veg except tinned fruit; avoid dry fruit, nuts and coconut.


Most of this you probably already know, and I can't vouch for any of it, but those are the main points from the guide on high output that I was given.
12-04-2013, 04:20 AM   #10
FreshDW
 
Join Date: Dec 2013
Location: Fresno, California
Hello everyone, there was good feedback all around on this thread. I have a problem with "high output" (I learned that word from this thread) and I am always looking for ways to slow it down. I hit high output (5 bm's) before noon. I recently started buying all gluten-free foods which Im enjoying. I will try each one of your natural remedies & report back later. Thanks!

*first post*
12-04-2013, 05:09 AM   #11
2thFairy
Senior Member
 
2thFairy's Avatar
 
Join Date: Sep 2010
Location: Dallas, Texas

My Support Groups:
Welcome to the forum, FreshDW!
__________________
Ulcerative colitis

Total colectomy with ileostomy featuring Sideshow Bob since January 2012

"The colon seems an unlikely candidate for dramatic effect, but now and then it serves that purpose well." The Associated Press Guide to Punctuation
12-04-2013, 11:21 AM   #12
VeganOstomy
Senior Member
 
VeganOstomy's Avatar
 
Join Date: Oct 2013
Location: Oshawa, Ontario

My Support Groups:
Thanks I drink the low sugar Gatorade but don't think I'm drinking or eating too much sugar. But even so the 3 drugs should help. No clue what's going on.
If it's the "G2" gatorade, then it has sucralose, which is known to cause diarrhea (as most artificial sweeteners do).

Of course, it could be unrelated, but it's likely going to help if you eliminate known sources of the problem.

__________________
Visit my blog to find out how I live with an ostomy while maintaining a vegan lifestyle. Tips, reviews and food

https://www.veganostomy.ca
https://www.youtube.com/user/Veganostomy/
https://www.facebook.com/Veganostomy
https://www.twitter.com/VeganOstomy

12-04-2013, 11:42 AM   #13
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
I only drink it because of the fluid loss due to diarrhea. I try to limit it but it's an easy thing to pick up on the go. I don't know what's worse G2 or regular for promoting diarrhea.
12-04-2013, 11:45 AM   #14
VeganOstomy
Senior Member
 
VeganOstomy's Avatar
 
Join Date: Oct 2013
Location: Oshawa, Ontario

My Support Groups:
I only drink it because of the fluid loss due to diarrhea. I try to limit it but it's an easy thing to pick up on the go. I don't know what's worse G2 or regular for promoting diarrhea.
Can you stomach v8? Its got way more potassium, sodium and nutrients to boot!

While I've also been drinking gatorade, it really is a chemical soup and any one of the ingredients in it could cause problems (I.e. the sugar and/or artifical sweeteners, preservatives, artifical colors).

12-04-2013, 01:02 PM   #15
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
As in the tomato juice or the fruit drink? Maybe the fruit one but tomato no way! I prefer organic if possible so I would look for an alternative.
12-04-2013, 01:11 PM   #16
VeganOstomy
Senior Member
 
VeganOstomy's Avatar
 
Join Date: Oct 2013
Location: Oshawa, Ontario

My Support Groups:
As in the tomato juice or the fruit drink? Maybe the fruit one but tomato no way! I prefer organic if possible so I would look for an alternative.
Yes, the tomato/veg blend "original v8". I've never seen an organic version in stores, but they do make it :

http://www.amazon.com/gp/aw/d/B0014ET1RO

I haven't tried the fruit blend and I don't know if the nutrient profile is different or if the fruit will upset your gut further.

Good luck

12-15-2013, 08:50 PM   #17
cgscott
 
Join Date: Jun 2013
Location: Hawthorn Woods, Illinois
Your story sounds identical to mine. The reason my output was so high was because of the high placement of the ostomy. My doctor at Mayo clinic prescribed an opium tincture to stop the high output. It was more effective than everything else we tried, but after 3 months we reversed the illeostomy because of severe dehydration. One idea, if you need to get fluids daily through IV, don't go to the hospital, ask your doctor to put you on home health and get your fluids at home. After 2.5 years without an ostomy, I am going back into surgery this week to get a temporary colostomy for a year. Hopefully take two is a success!

Courtney

Crohn's Disease (14 years)
Perianal abscess (3 years)
Illeostomy (temporary loop)4/15/2011-7/18/2011
Colostomy 12/2013-?

Current medications: Cimzia injections, azathioprine, probiotics, enzymes, Imodium as needed
12-15-2013, 10:17 PM   #18
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
Was your ostomy due to the perianal abscess? Did it heal before reversal? My stoma is a bit high but tincture of opium only thickens it but doesn't slow it down.
12-15-2013, 10:59 PM   #19
cgscott
 
Join Date: Jun 2013
Location: Hawthorn Woods, Illinois
Yes, I'm getting the ostomy b/c of the abscess. I had a similar experience with the opium. Have you tried diet changes, such as more fiber?

The rest of your intestines learn to absorb liquid with time, but for some it can be a slower process. Time might help. I wasn't willing to wait and find out. After the reversal I was abscess free for 10 months and now it's been back for a year and a half. On Wednesday I get surgery for the colostomy, which should allow for better food absorption and hopefully less frequent output than the illeostomy. Hopefully a year with it and I will be done with this abscess for good!

Courtney
12-15-2013, 11:29 PM   #20
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
Did you originally need the ileostomy due to an abscess? Did that absecess ever heal?

I can't really do fiber because I have strictures but hope they reverse my ostomy soon because this thing is a beast.

I hope you have a better quality of life with the colostomy, they seem easier to manage.
12-15-2013, 11:35 PM   #21
VeganOstomy
Senior Member
 
VeganOstomy's Avatar
 
Join Date: Oct 2013
Location: Oshawa, Ontario

My Support Groups:
Did you originally need the ileostomy due to an abscess? Did that absecess ever heal?
I had my ileostomy done in August and my rectum removed last month (November). I had severe parianal disease with fistulas, abscesses and fissures and I can tell you that for me, the fistulas and abscesses almost completely disappeared during that short time in between surgeries (I have the pictures to prove it!). I have no doubt that given more time, it would have healed further, but since my rectum had to go, I can't test that theory out!

I can also say that while I HATED my experience on Prednisone, my fistulas and abscesses were also closing up and shrinking within weeks. Again, perhaps time would have healed them further, but I wasn't able to stay on Pred for very long.
12-29-2013, 12:38 PM   #22
MicheleM
 
Join Date: Nov 2013
Location: Winnipeg, Manitoba

My Support Groups:
New to this thread.....I've had an ileostomy for over 30 years, but I'm still learning. I just recovered from a bad intestinal flu. I know it wasn't Crohn's because most of the family had the same symptoms. I had very bad D for 2 days and got very dehydrated. It caused severe cramping in my leg muscles. I used a product called Gastrolyte. It is an electrolyte emplacement for children and adults with diarrhea. My husband asked the pharmacist what he recommended for someone with an ileostomy who needed to replace electrolytes and after some thought he found this product behind the counter. It worked quite well, but I needed 4 doses in one day to improve the cramping. There is no daily maximum dose. Probably because it tastes so salty, no one will take more than they need!. I found it easier to swallow if I added a bit of cranberry juice and drank it at room temp or a bit warmer.

I also like V8 juice, with a bit of Clamato juice mixed in, for a salty veggie drink. The brand I buy is not organic, but it has no additives, only veg and water and salt.
12-29-2013, 02:51 PM   #23
steve55
 
Join Date: Jul 2012
Location: New York
Sometimes the simple stuff helps Pepto Bismol?
04-14-2014, 02:01 AM   #24
OccupyCrohns
 
Join Date: Oct 2011
The best anti-diarrhea that has worked for me are opiates... but getting a prescription seems almost impossible. You might ask your doctor about tincture of opium - which I believe is like opium but has been deodorized to make it not addictive. Keep in mind that opiates are very addictive though so it shouldn't be taken lightly... but I haven't found anything that works better.

Another option might be cholestyramine.

But of course talk to your doctor... I was warned by my doctor with some anti-diarrhea meds that you could risk having toxic megacolon. But each patient is different. Anyway, hope this helps...
04-14-2014, 08:36 PM   #25
D Bergy
Senior Member
 
Join Date: Apr 2007
Cholestyrine does work well but I had the same problem with my temporary ileostomy and after reversal. The bottom line is when I was inflamed nothing stayed in me long.

Really, prednisone was the only conventional treatment that came close to working, but with the usual side effects. I hope you can get things under control.

Dan
__________________
Nothing I post here is to be construed as medical advice. I am not a doctor or health professional.
They are simply my opinions.
04-15-2014, 01:14 AM   #26
Susan2
Senior Member
 
Susan2's Avatar
 
Join Date: Dec 2011
Location: Geelong, Victoria, Australia

My Support Groups:
Going back to the original question of this thread, I find that barley water is great to drink when you have diarrhea. You can buy lemon barley water but it is easy to make your own and it won't have any chemicals, etc in it.

There are lots of recipes on the web. I use this as a basic recipe but always add ginger as well as lemon:

For one quart of barley water, bring six cups of washed barley to a boil with eight cups of water. Set the heat to low and let it simmer for an hour, then strain. Pour the hot barley water over two juiced lemons and their juice and add sugar to taste while it's still warm. Chill, and remove the lemons before serving. Adding a small piece of peeled ginger to the steeping barley water gives a spicy tang.
__________________
Crohn's Disease - symptoms since c1955, diagnosed early 1970s. On Prednisolone until...
Total Proctocolectomy in 2000.
Ileostomy that behaves most of the time
Currently on no medications, but under constant gaze of very caring GP, with annual blood and other tests.
Reply

Crohn's Disease Forum » Surgery » Stoma Subforum » Nothing stops the massive diarrhea
Thread Tools


All times are GMT -5. The time now is 04:55 PM.
Copyright 2006-2017 Crohnsforum.com