Best medicine for diarrhea when all conventional meds have failed?

I wish there was a medicine that works  Everything seems so useless to defeat it when you have a j pouch.

Have you thought about your diet maybe something your eating doesn't agree with your pouch,was in the same boat about two years ago was prepared to go back to a stoma, but with the help of a knowledgeable dietician in fodmap have had excellent results don't use any type of medication at all anymore was a gradual process even told the dietician it would never work I had had enough.have a read up on it I find dairy even lactose free some fruits aggravates the pouch I know we are all different but worth a look at Kate Scarlata is a fodmap dietician if you do instergram she is on there hope this helps

I have made very strict dietary changes before and had minimal results.  I guess I need to accept that I am missing a large portion of my bowels

I have a very unconventional treatment...I take Gravel or Dramamine (they are motion sickness medications)...they slow down the peristaltic rythme but can make you sleepy and feel dehydrated...they are OTC, do not require a prescription and come in various formats and dosages.

I would start with a liquid or chewable baby or children's dosage and work your way up very, very cautiously. 

Also, do not drive or operate any machinery until you know exactly how you react to each dosage...

I agree that diet does influence your output but you may be lucky and your gut will eventually start to take over some of the functions of your abscent colon.

Give it time...

Sharon 

I am 7 years post op so I am getting impatient lol

Andru, have you ruled out pouchitis?

Do you eat white or whole grain starches? I find a major difference in output between the 2? Whites create wallpaper paste but whole grains tend to absorb liquids...maybe worth. Try?

S

Hi im new on this forum, have been reading all the comments about taking drugs for the diarrea. Iv had a jpouch since 2002. Ive had really good luck with a teaspoon of Benefiber in my milk or juice. I buy the generic fiber from Walgreens, its tasteless and not gritty at all and really helps firm up the stool slightly. I started out with 1 teaspoom and add a little more gradually. Not too much because with a jpouch you dont want it too firm.

I am also having success controlling diarrhea on a lod FODMAP diet, similar to Sudie's comment. This is not a permanent diet, but an elimination diet to help identify foods which may be triggering your symptoms. 

A diet high in resistant starches can also naturally bulk up your stool, but be careful as too much resistant starch at one time causes me great pain.

Good luck!

My output isn't formed but is relatively thick and I kind of take the Imodium more from habit rather than need.

When I've consumed more fluids than normal, especially milk, I notice my output is more loose than normal, which prompts me to take Imodium, maybe two, especially just before bed.

As a result of the removal of our colon, we no longer have the mechanism which squeeze and absorbs the fluid from our waste, I assume the thick n lumpy porridge oats consistency of my BM, is what leaves the small intesine and ends up within the J pouch; so surely diet or some kind of stomach bug is maybe the cause of the diarrhoea.

Anti diarrhoea tablets slow down the gut, so they must reduce the spasms that move the contents of the bowel along;  in our case, the small intestine, so they maybe more effective on patients who still retain their complete digestive tract.

I think I finally found my magic potion.  I am now taking Viberzi 100mg tablets every 12 hours.  Works perfectly.  It is an opiate but it is targeted to the gut.  It also does not cross the BBB so there are no highs or addiction.  It is only a Schedule IV so it is easy to get...and it is indicated for diarrhea!  

I've been completely drug free for 10 years. My secret formula: Metamucil (lots) and a probiotic once in the am and again in the pm. I buy the generic fiber from Target or Walmart. My stool is just about normal, no butt burn and hardly any gas.

Codeine helps slow things 

I have had  Crohn's disease for approximately 60 years.  My entire colon was removed 20 years ago but the symptoms never stopped.  Colonoscopies showed a beautiful pouch with no lesions but they continued to treat me (unsuccessfully) for pouchitis.  I had my gallbladder removed quite a while ago and I just figured out that the bile that pours into my intestine is irritating the intestinal lining and may be the cause of the frequent bowel movements (20 to 30/day).

Colestegel or Questran should help with bile acid malabsorption 

I had my GB yanked 3 or 4 years ago...it was huge...1 litre of bile traded in it...I thought that the horrible pain would go with the gallbladder but since last fall I  have "phantom" pains there...1 doc said it was gastritis from all of the Nsaids that I take for pain, another said it was maybe something else...all I know is that it bangs-pinches-stabs on the upper right side and that no one seems to be able to give me a definitive diagnosis.

Some days it is so bad that I have to cut  class short because I can't sit still....

2 out of 3 still say that it is the NSAIDS...so maybe they are right.

For now, gastric protectors help a bit...but not completely and I don't want to be taking them forever.

Sharon 

You could ask for a HIDA scan, it will outrule any strictures etc post surgery that may well cause that pain

I just looked up Viberzi and to my dismay I discovered it should be avoided by people such as me living with no gallbladder http://www.medscape.com/viewarticle/877264

Don’t fret.  I don’t have a gallbladder either.  It does put you at a higher risk of complications but does not guarantee them.  I’ve had zero problems with 100mg twice daily.  I would suggest starting at a low dosage.

I'll take my chances then, it's worth it since I'm so depressed with living with my J Pouch

I posted earlier on the issue of severe diarrhea associated with a takedown and gall bladder removal.  Without being too graphic; when I am in a flair I have 30+ bowel movements (yes, 30)/day.  Most do not contain stool but consist of a greenish mucus discharge.  My Gastro and my primary told me not to worry about the discharge but no one was addressing the excessive bowel movements.  As a retired doctor I did my own research and discovered a condition called "BAD" (Bile acid diarrhea).  My primary was surprised (he won't sell me short again) and, as there is no lab test specifically for BAD and my other related labs were normal, he has put me on a trial of Questrin (Cholestyramine).  He says I should see some relief within 3 or 4 days, if no relief by one week I should stop the medication.  Hint:  my pharmacy was willing to fill a "partial prescription of 15 doses rather than force me to purchase 60 doses.   (It's not cheap).  If it doesn't work, I will just cancel the remainder.

This drug is used to lower cholesterol but it has an "off label" use of binding with bile.  Lets hope it works and  I will post the results in a few days (I'm on day 1).

There is a test called seCHat but usually doctors will just trial questran or cholestgel and see does it help. 

I totally understand.  I was ready to have my J Pouch taken down after 7 years of misery.  But my doctor said hey let’s try one last thing.  He said it was a long shot and it could make me much worse.  I discussed all of the contraindications with my doctor.  We agreed that at the first sign of Viberzi side effects I would discontinue ASAP and schedule surgery.  Well not much happened the first few days.  I was down because I had really wanted to avoid surgery.  BUT, after the first week I started having normal bowel movements.  I was still going 5-8 Times per day but I could live with that.  Now that I am over a month into taking Viberzi I have 2 maybe 3 BM in a 24 hour period.  My energy is returning, I’m retaining much needed fluid.

With all that said, I hope I didn’t find a unicorn.  I hope it helps everyone in the J-Pouch army!