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19 replies

Is tincture of opium the next step?

BarbieGBarbieGMember
I have an almost 19 yr old jpouch and have been on Lomotil for a long time. I also suffer from kidney disease caused by a long hospitalization. Would tincture of opium be safe for me with my kidney problems? I know I should ask my doctors, but maybe Jan has some insite? I have been taking 3 Lomotil twice a day and still go to the bathroom 8+ times a day and my bowel movements are very liquid recently. I have been eating the right foods, too. Just came off 5 days of Levaquin for pouchitis, had to stop due to the joint & tendon pain. Haven't been to the GI in almost 2 years since surgery to correct the design of my jpouch @ Mt.Sinai Hospital in NYC. Been doing pretty good since recovering from surgery, but have been stressed lately.

How often do you have to take it & for how long?
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Jan DollarJan DollarModerator, RN, retired
Tincture of opium, aka Paragoric (only difference is that Paragoric is oderized with camphor to reduce abuse), is specifically prescribed for chronic diarrhea. It is safe. Just keep out of reach of children. The good news is that tolerance builds for the analgesic effects, but not the GI (constipating) effects. The bad news is that if you build that tolerance for the analgesia of opiates, you will need very high doses if you have surgery, etc.

Jan Smiler
L liz11Member
I was on tincture of opium for almost 2years. You take only a very small amount- no side effects, no problems at all and no issues when I stopped taking it. It worked very well to slow down the system. I took it in addition to immodium, nexium, and benefiber.. to slow down things.

But first you might want to try other things- like increasing the lomotil, or switching to immodium - I was taking 8/day of that, adding benefiber, etc..
BarbieGBarbieGMember
Thank you all. I haven't tried Immodium lately. I'll try that plus increase the Lomotil before I venture down the opiate path. I take Tramadol & Ativan, don't know if I can mix the three drugs.

I will go back to my GI if my movements don't slow down. I have to keep hydrated so my kidneys don't fail. Does anyone else have kidney disease from dehydration & drugs (prescription)?
Scott FScott FMember
As Liz points out, some folks can be extremely successful with DTO, and may even have no difficulty when stopping. As Jan points out, it's a safe medication (when indicated and used as directed). Withdrawal from opioids (whether DTO or oxycontin) is a bit like having the flu. Most folks can readily stop when the drug is no longer needed, and some have more trouble. DTO is what you turn to when Lomotil, Immodium, probiotics, soluble fiber, and dietary management aren't enough to control diarrhea.
skn69skn69Member
I spent the better part of my adolecence on codine, lomotil and paragoric (sorry but I did not realise what it was until just now)...although I do remember being in a permanent sort of fuzz I don't remember having problems getting off of it once they made my pouch...it did a good job slowling me down but had a sort of boomerang effect on me...it took a while to find the right dosage, somewhere between not running every 1/2hr to the bathroom and not being totally stopped up.
Sharon
S StoneMember
Is it hard to get a prescription of tincture of opium from your doctor? I've had my pouch for 6 years and I really need to slow my bm's. Do doctors give you a hard time about it? Should I ask my primary doctor or my GI doctor. My primary doctor gives me meds but is just a hard head about pain and diarrhea. No one knows how we feel except us the ones who run to the bathroom and take all the abdominal pain. Thanks friends for all your advise.
Jan DollarJan DollarModerator, RN, retired
Probably easier to get the prescription than finding a pharmacy to fill it. Few pharmacies carry it anymore, since the big FDA warning of accidental overdose deaths a number of years ago, because doctors were writing for one concentration and using non-standard abbreviations, and the pharmacy was filling with the wrong one, using twenty five times the intended concentration. With paragoric, there is not this issue, but still often not a stock item.

http://www.accessdata.fda.gov/psn/printer.cfm?id=224

Jan Smiler
S StoneMember
I went to my doc today and asked him to give me a prescription of tincture of opium and he said no. He said its a drug. I said your kidding me rite. I have chronic diarrhea and nothing is helping me. He said sorry i can't. I told him you don't know how it is to wear adult diapers and run to restrooms everywhere you go. But he still said no. I told him so much. I've been his patient for 11 years and still he is a rude ununderstanding person. What can you do when u have a doctor like that. Really sucks. I thought I had some hope for my diarrhea but no hope now. Thanks friends
Jan DollarJan DollarModerator, RN, retired
What can you do? What I do is switch doctors. I have no use for doctors that do not listen. Sure, if they think my idea is crap, that is OK, but they need to tell me why it is crap. Telling me a drug is a drug is just plain silly. Of course it is a drug, that is why you need a prescription!! Paragoric and tincture of opium are legitimately used for diarrhea.

I would suspect that he has been in trouble with the Feds for over-prescribing narcotics without monitoring his patients.

Jan Smiler
Scott FScott FMember
You probably do need a better doctor. Most docs don't like to be told what to do, but the better ones will listen to your ideas with an open mind. If there are other things for you to try first, he should suggest them. I'd recommend listening when that happens, with an open mind. For a doc who's never prescribed DTO it can sound like a terrible idea.
S StoneMember
Thank you Scott and Thank you Jan. You guys are right. Only a good doctor listens to his or her patients. I will find a better doctor here in san Joaquin valley some wher. Im sure im not the only one out here with a j pouch. And sick as hell. From this diarrhea I lost 10 pounds in 3 days last week. And this month of january I have lost a total of 19 pounds. Thats pretty sad. Im trying to put some weight on and the chronic diarrhea and is just taking it from me. My doctor knows all about it. I get weighted in everytime i go see him. I'll look through the computer and hopefully find a better doctor. How can i tell if he is a good one? I'll just have to find out tomorrow. Love u guys thanks so much...
L liz11Member
see if you can find a GI doc at a center that specializes in IBD. You may have a much better chance of someone there having some minimal knowledge of jpouches at least. Also.. it is not a bad thing to have to travel to see a good doctor. This is your life. And you deserve to have a "partnership" with doctors that have good medical knowledge AND experience, and will listen to you, and care for you. Ask questions when hunting for docs. You really really need someone with jpouch knowledge.
good luck.
In the interim.. don't know which doc you went to.. but if your GI doc was the one that refused you.. then go to your primary care doc to get a prescription.
S StoneMember
I live in the valley but the bay area would be fine like fremont dublin anywhere around there even if i have to go across the bay bridge. I would love to have a understanding doctor that would prescribe me what i need. I had my surgery at center for colorectal surgery mt. Zion. In san francisco. Thank you Jan ur so blessed for helping me and many others. My wife says thank you too.
S StoneMember
I live in the valley but the bay area would be fine like fremont dublin anywhere around there even if i have to go across the bay bridge . I just need a doctor who understands me and listens to my situation. If anyone of u guys no a understanding doctor that would prescribe me what i need to take care of my bm,s please let me know thank you all.

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