I had a j-pouch done 2 years ago. I have never been able to get the diahrea under control. I have been on lomitol with poor tolerance, lotronex, metamucil all the regular meds. I am now on VSL#3, cipro, protonix and wel-chor. I can not get rid of the fissures(pain is horrible) despite diet change. I do not have crohn's or pouchoutitis according to docs. I do have alot of upper right quadrant pain and nausea. Have had a problem with pancreatitits for awhile but they don't even check my numbers anymore. I also have alot of blood in my stools. My hemoglobin stays low. They say there is nothing else they can do and that I have a functional pouch problem and it will always be like this. I am very frustrated. I only weigh 88lbs. and am always dehydrated and very tired. Unfortunately, I was diagnosed with breast cancer and couple of months ago so I can't take alot of the meds they would normally try. They want me to try Tincture of Opiate for the diahrea. I was wondering if anyone else is or has tried? Are there side effects? Does it work? They say that once I start it they will never be able to get me off. It is very addicting. Help before I start meds. Thanks for any advice

Here's what I took when I had a high output ostomy:
Half hour before each meal and at bedtime
2 lomotil (what "poor tolerance" did you have?)
2 immodium
2 metamucil wafers
6 drops of tincture of opium in light cranraspberry juice (I think you can take up to 12 drops though)
I didn't have any problem stopping when I didn't need it any more after my takedown. I'm not that sensitive to narcotics though (high tolerance)so I might be an exception, but I didn't feel any "high" or anything with it. Plus, it tastes nasty (hence mixing it in the Cranraspberry juice!)

This slowed me down pretty well. If you can tolerate the taste and texture of Questran, you could try that too.

I don't know why they ignore your pancreas, and have they checked your liver and gall bladder? I would get a second opinion from Cleveland Clinic or Mayo in Jacksonville, FL.

Maybe Jan knows of other meds they could try. Heck, I'd even try Low Dose Naltrexone as a shot in the dark at some point.

Other than adding things, have you been checked for Celiac Disease? I think it's a simple test. You'd have to greatly modify your diet, but it's better than living like you are.

Other things that can speed things up are sugar, some fats, caffeine, some insoluble fiber from fruits and veggies (Whoa, watermelon is like RotoRooter for me...but it's soooo good!)so try to avoid those. Eat salty foods to keep from getting dehydrated.

Please keep us updated. I haven't even mentioned the breast cancer. The meds from that can't be helping the situation. I hope you find some relief soon.

Take care...Lori

Thanks for the reply. I didn't tolerate the lomotil because it caused my heartrate to increase, my eyes very dry and i was shakey. We think it was because of the stropine in the drug. Also, both the immodium and lomotil would slow me down for about and hour then make up for the rest of the time until I could take more. I have taken questran and now wel-chor because of the chronic pancreatitis. They don't know what caused this except that it is idio-pathic. I was on prednisone for ten years straight and was never able to stop them without bleeding. When I had they ileostomy I had a dumping syndrome and had continuous dehydration even with a PICC line and TPN. At this point they said they had to reverse earlier than expected and hook up j-pouch. I try not to eat veggies and fruit. The acid burn is even worse and yes worsening diarrhea. I am tired of having 20 - 25 bowel movements a day and the chronic joint pain and fatigue from all the bowel movements. The other drug we are looking at is octreatide which is three shots a day. The only problem is that it can really affect your blood sugars and I am already diabetic from the pancreatitis. I don't have a problem trying the tincture of opiate if you have had good results with it. They have checked my gallbladder and celiac disease. Everything ok. I do have hepatitis C and have had for 20years, may play a part in this. I did think about going to Duke or somewhere else for another opinion but this breast cancer thing came up and now I am going through radiation five days a week for seven weeks so I can't go anywhere now. I will try the tincture of opiate and let you know. Ijust started with a new doctor and the first thing he said was "you are a very complicated case not to mention that you were in the hospital for 4 months after a proctocolectomy." I have had a bone tumor in the past separate from this breast cancer. He said I was very lucky at this point because I should have died long ago. I guess I should just put with whatever I get. Sorry about the rambling on.

Thanks, Sharon

Try the immodium and the metamucil wafers (if they don't have too much sugar. If they do, try sugar free metamucil or psyllium husk fiber (not in capsules, it won't dissolve in time for you) and the tincture before each meal and at bedtime and keep up with the well-chol. (they gave that to me, but I didn't notice a difference). Too bad about the lomotil though. Look into Chia seed or Salba (there is a thread called "thicken up" or something like that that talks about it) It's a seed with both soluble and insoluble fiber and seems to slow some down. Some thought that 1 tablespoon at a time slowed them down too much. Maybe that dose would be perfect for you! You can request a sample from Salba Source. You'll get 3 packs (6 tablespoons total). It's at least enough to see if it DISagrees with you or not.

One other thing you might want to research is Low Dose Naltrexone. It mysteriously helps some people with Crohns and other autoimmune diseases and doesn't SEEM to have any bad side effects except for temporary sleep issues. I'd wait till the chemo is over though. It's just a thought. You probably won't find out much from your regular doc though. It's considered off label for everything at this point(although there have been initial trials for Crohn's with good results, they are working on a second trial now), and it's so inexpensive that there will probably never be major research done on it because there is no money to be made. Possibly only those from foundations looking to cure/treat diseases, but not drug companies, where most of the research money is. Do a search for LDN on the board and you'll probably find a link to the LDN discussion group to do research or ask questions.

Ok, I'll quit rambling now!
Take care...Lori

I'd probably ramble a lot more if I had all of your issues to deal with. You must be one strong person to have gone through and continue to go through all of that. Bless your heart!

I have no doubt that you have a functional bowel disorder, but that does not explain all. You do not bleed with functional bowel disorders. I also agree you are quite complicated and everything I would have suggested seems to have been suggested to you. You might do better to go with the octreatide, even if it does elevate your blood sugar. At least there are a myriad of treatments to get that under control. But, without controlling the diarrhea, you will not be able to get on top of your nutrient balance, which is really important since you have no more weight to lose.

I wish I had some simple solutions for you. Sorry you have so much on your plate.

Jan

Thanks for all the input. Will try some of the ideas and let you know.

Sharon

I have had the same problem. My doctor finaly put me on something called pamine forte 5mg 4times a day. It seems to help. I tried all of the other stuff also. This is the nongeneric name and is supposed to better than the generic which is methscopolamine bromide.

Hi Sharon,
I am so sorry that everything is so difficult. I too take welchol but it did not help at all until the doctor increased the dosage to 6 a day. I now take all my other meds in the morning and 3 welchol with lunch and 3 with dinner. My output has decreased tremendously. My normal was 12 to 20 times per day I am now at 6 to 8 and it has gone from a very liquid acidic movement to formed easy to pass movements. I don't know what your dosage has been, but if you have been at a low dosage this might help.

I hope you get some answers soon, I know how difficult this can be.