chronic diahrea no matter what I do??? suggestions

Tincture of opium or hydrocodone slows things down, has your doctor tried giving you those? Have you done a defecation test?
Did you have a temp ileo? If you did, did the same thing happen with your pills coming straight through etc?

I see your take down was around 6 months ago. In the beginning my surgeon had me taking imodium and metamucil at the same time. I used the clear caplets filled with metamucil so I didn't have to mix with fluid and therefore took in less water than the directions said. We are to take in less water when we take them so they soak up the fluid. We still need to drink plenty of water but not when we take the fiber. I took imodium and mutamucil 3 times a day with meals and imodium before bed. I was told to take what it took. You can take up to 8 Imodium a day so start out with 2 each 4 times a day and take 3-5 caplets of metamucil 3 times a day. I went from that and cut down as my pouch got older. Imodium is like a super mild narcotic, or so I've been told. Therefore Tincture of opium is used by some with problems, which makes sense. I have chronic pain and take a pain medication with hydrocodone and know that slows my system down so I rarely take anything. When I do I take Imodium when I'm going somewhere for a long time.

The best food for stopping me up is a Bagel.

I don't mind a softer BM as it is easier to pass but it needs to be digested food and medication and supplements need to dissolve. I hope something above is new and will help. It's a hopeless feeling when your doctor doesn't know what to do next. My GI had the same problem and referred me to a different GI that specializes in IBD only. I would hope your doctor would do research, call another doctor or refer you to a specialist as mine did. If he can't help you please ask me for a referral. Mine referred me to a doctor at Mayo, it is only 4 hours away. There are other good places and doctors to go to that specialize in IBD and related problems. J-pouches are not real common so you might need to travel a bit to find someone that can help.

Please let us know how you are doing.

Immodium and lomotil didn't work for me - even though I was taking 40 immodium capsules a day.

What does work for me - is codeine phophate - 60mg x 3 times a day

You don't mention how long you are out from your takedown. However, you say that you eat and then go to the bathroom within an hour. I'm assuming pouchitis has been ruled out. From your description, then, this sounds possibly like a spasmodic bowel. Anti-diarrheals on their own won't really help this; what you may need is an antispasmodic such as bentyl or perhaps even buscopan (though that one in particular has some annoying side effects). Please discuss this with your doctor.

THANK YOU ALL SO MUCH FOR YOUR REPLIES...

I had a long year last year, began with the first part of the J pouch surgery in January 2012 and had a temp iliostomy. First surgery in Knoxville, TN with a provider that trained at Cleveland Clinic. The pouch would never heal
and after much waiting and different attempts at getting it to heal, I was sent to the cleveland clinic to Dr. Dietz. He discovered thru an exam that there was an abscess at the
rectum where the pouch was supposed to attach and that is why it never healed. So they had to go back in and try to fix it. Dr. Dietz said the abscess had caused damage and instead of fixing it he had to recreate a brand new pouch.
Time passed and exams were done...finally the pouch was good. In December of 2012, the takedown was completed at the cleveland clinic.

I have been on pain medication(oxycodone/fentnyl patch) since due to issues. I hurt in my rectum area and I have urinary problems since the surgery. When I stand there is a tremdous pressure at my rectum and it causes alot of pain. Pouchitis has been ruled out. I am talking with a urologist because I have recurrent uti's and I have the urgency to urinate but cannot 90% of time.

When I had the colostomy bag, my stool after a long while did have some consistency at times after taking the psyllium fiber pills. Medication if took whole came out in the bag whole.
I cannot find a remedy for thickening my stool with the pouch at all. It is pure liquid, just like running water.

I am 6'4" and I weighed 200 lbs before surgeries. I got down to almost 155lbs after
all surgeries. I am back up to 165. I have a good appetite but cannot add weight because I am not keeping food in long enough.

I feel hopeless alot of the times and wonder if UC was better than this???crazy huh???

My doctor has not referred me to anyone, just told me he didn't know anything else to do to help me.

I appreciate any and all help and I will give it a try to see if I can get relief.

It sounds like you could have short bowel syndrome because you lost more small intestine than most. Your symptons are very much descriptive of short bowel syndrome. Get yyourself to a gi doctor and ask abou that. In addition to constant diarrhea etc you may not be absorbing all the nutrients you need.

In the interim look up a diet and med and timing plan for "dumping syndrome". Its what is recommended after gastric bypass surgery. Strict rules about eating how, when and drinking etc.

I previously had a clinically classified high output loop ileostomy when my failed jpouch was disconnected but left inside. So the ileo was pretty high up the small intestine. Everything i ate or drank gushed right through as you describe, i as underweight and kept losing more weight, and meds did not help. I found a doctor that specialized in nutrition issues for ibd patients and she put me on a very rigid "anti dumping" plan. It worked like a champ. Pm me if you want more details.

But you really do need a good gi doctor to care for you as your situation is permanant.

Good luck

I agree about the short bowel, first thing that popped into my head when i read your story about how you'd had a second pouch created. The farther up the small bowel, the less time it has for the consistency to thicken.

Since you are already on potent opiates and have tried all the other drugs, and if the "anti-dumping" plan does not work out, there is one more thing I did not see in your long list of what you have tried.

That last ditch thing is Sandostatin. It is a hormone given by injection.
http://en.wikipedia.org/wiki/Octreotide

Jan

Also was thinking yoy could get dr. Dietz at cc to refer you back to a cc gi for this. It would be worth the trip i believe.

just wanted to let you know as you are a newbie with this site that your PM worked and I pm'ed you back a long list of my "anti-dumping" plan.
But please please... you need to see a gI doctor as you could be nutritionally deficient. And one trip to cleveland could get you on a new path. Maybe see if you can meet with a gi doctor and a dieticien at the same visit? Maybe have the CC gi doctor order blood work in advance which you could get done locally so he/she has all the results before your visit.

oh and one thing I forgot in my list I pm'ed you was that meds should generally be liquid or chewable if you have this going on. otherwise you may not be absorbing them.

It sounds like everyone is on to something here, however, I did not see that your doctor has tried you antibiotics yet. Are you certain you don't have pouchitis or perhaps have pouchitis on top of another underlying issue? Pouchitis onset can be very early after takedown so if if you've only ever known extremely loose stools, this could be part of the problem. Maybe you've already ruled this out, but I didn't see you say anything about it. No amount of bowel slowers will help you out in that case (well, maybe partially relieve symptoms, but won't get rid of the problem)

I agree; reading your second post, short bowel seems far more likely than spasmodic bowel, though in that case, antispasmodics may still be of some help in slowing things down for you. Regardless, you definitely do need to see a GI and a referral back to CC would make sense. Also, have you been scoped to definitively rule out pouchitis? That might be an issue on top of everything else if it hasn't been objectively ruled out.

Hi there,

I did not have the problem with my first pouch needing revision. So alot of what has been said about short gut syndrome makes alot of sense, as well as dumping syndrome.

But I have also never ever had solid stool since I had my pouch in 2007. And I have never been able to slow my diarrhea down to less than at least 20 times a day (full 24 hour cycle). My doctors have tried absolutely everything. I am on opiate therapy to slow my bowels, which has been the only thing that has made any difference, and even with that I'm down from 40 times a day to 20.

I had a very active temp loop and it ran constantly. I even had nurses from Hollister come to my house because they thought I was doing something wrong because my bag literally burst open at least three times a week. They were amazed at my output.

I have been underweight since this whole ordeal started. I have definitely had pouchitis in the past, but my doctors agree that the pouchitis is not the full cause of this. I have had some serious hospitalizations due to extreme dehydration because literally nothing stays inside me long enough.

I just started using a product called CeraLyte. It is a rice based oral rehydration therapy. It is often shipped to areas in the world where a natural disaster has occurred and has caused bad water. It is used for cholera patients. the level 90 is what I now drink.

It is making a huge difference for me. It has nutrients and vitamins, and is designed to help the body repair itself in order to absorb calories.

It isn't available by prescription and can be pricey ($260 for 100 packets) but this is the last option for me.

PM me if you want more details or just to commiserate. I never had the ideal 5-10 BMs during the past 6 years, not even close.

I'm sorry you're dealing with this. It is literally so exhausting.

First of all Thank you each and every person for trying to help.

To answer a few questions:
yes I have been on several antibiotics and canasa suppositories.
I experienced no relief from either.

When I had my iliostomy I was given sandostatin to try to control the diahrea then and it did not
do anything for me either.

I have tried calling my CC Doctor for assistance and have not gotten a call back. I called Monday and
this is Thursday. Gonna try again.

I struggle because when I tell the doctor at Knoxville all of my symptoms and troubles I have, he
says how he has never heard of such things and acts like I could not possibly be having the issues.
The doctor at Cleveland Clinic was supposed to be contacted and kept abridged of everything. Whether he
has been thru the Knoxville Doctor, one only knows. It is like the surgeries are done and they do not
want anything more to do with you and your complications. It is hard to find a GI doctor that knows
about the J-pouch but I may have to go that avenue if I keep hitting walls.

That being said, if anyone knows of a doctor that they have went to and had success with this type
of problem, can you let me know who and where? Thanks again so much.

I don't know what your insurance requires but you need to call CC and make an appointment with Dr. Shen. Don't wait for them to call you back. Call, say your are Dr. Deitz's patient and need to be seen ASAP. They'll ask questions and go on from there. If you need a referral maybe they can call your GI and he should refer you since he's given up on helping you.

If you do a search on here for Dr. Shen's name you will find literally hundred's of posts from his patients and 99% are positive. I don't go there so have no personal experience with him. It seems logical since that's where your surgery was. Your surgeon could be on vacation, the message lost etc. Call them back until you get an appointment.

Dr. Shen may not necessarily be the right GI doc for you at cleveland. But I guarantee you that there are great GI docs there for your situation. You must get through to Dr. Dietz or his NP to figure out who you need to see.

Also tammy kath. I will try to forward you my anti dumping info that I pm'ed to the original poster. I had mentioned a true WHO solution, which CERalyte is, but bless your heart that you can take that. It tasted awful to me. Anyways, I used Jianas brother oral rehydration salts and mix with crystal lite. Tasted better for me and far less costly.

Hi liz,

That would be great. I have mentioned dumping syndrome to my doctors and most of them don't act like it could be the cause. But they never gave me any reason why it couldn't be.

Yes, the CeraLyte isn't the best tasting thing on the planet, LOL. But a few years ago when I was diagnosed with Failure to Thrive because of the diarrhea and massive dehydration, I was put on Tolerex-which is enteral nutrition. That stuff makes CeraLyte taste like a fine wine! Ugh, I cannot even smell that stuff now without having a visceral reaction.

Dumping is very common if you have gastric bypass surgery but not the one I have. I had a vertical sleeve and sometimes now that my colon is gone I get dumping, out of nowhere, years later. I am not sure Shen is the right one for this issue so I am going to a Bariatric center since this is their specialty and those GIs know about dumping and transit. Shen I think is more focused on pouch issues or UC/Chron's and def lower than upper IMO.

quote:

anti dumping info

If you can send me it I would like to read it as well.

Thanks

Also, check your meds you are on. I take an antibiotic called Tindamax and it makes my transit time fly though and pure liquid comes out of me.