I'm glad that you found something that works for you. 

I've taken it before when I had my loop-ileo to slow my high-output down; nothing else seemed to work for me either.

Some doctors won't prescribe Tincture of Opium; my GI said that if my surgeon wouldn't prescribe it then he would write me the script but the surgeon ended up writing me the script.

It's really hard to find, when I left the hospital we had to stop at 8 different pharmacies on the way home to find Tincture of Opium.  It's just not used very often any more. 

It tastes so gross; nothing that I ever mixed it with ever helped mask the awful flavor that just lingered...ugh.  I actually stopped taking it because I couldn't stand the flavor.

Thank-you Sonoma-Erin, I have similar problems and just recently got my gastro. to let me try it. Then the pharmacy had a problem filling it, but finally I am supposed to pick up my first dosage today. 

I know the taste is terrible, it tastes like the rind of an orange to me so I started taking it in just a tiny bit of OJ and that works great.

Update: Finally got the tincture and took a dose before bed. Last night was the first night in a long time that I did not have to get up to use the bathroom or have any leakage! 

I am taking loperamide, but my liver numbers are elevated. would the tincture be better with the liver?

Ask your doctor but it can elevate your liver numbers.  

http://en.wikipedia.org/wiki/Laudanum#Hazards

Long-term use can also lead to abnormal liver function tests; specifically, prolonged morphine use can increase ALT and AST blood serum levels

 

I am wondering how much of the tincture others are taking to get results.  My prescription is for 0.6 ml up to 3 times / day. So far I take only one dose at bedtime since having problems at night has been my main concern.  I understand there are different strengths of o.t. available. Mine is 10mg/ml of anhydrous morphine. It also states on the bottle that it is "deodorized" which I guess helps the "terrible taste" problem that some members have complained about. I just mix it with a little water and it doesn't taste bad at all. (as with most meds these days, the charge to insurance is insane- over $800/ bottle. My copay is $25.  While the actual negotiated payment is probably less, pharmaceutical companies are still raking in huge profits)

What I found on your comment...I took opium tincture for a short time, I injected it in a gel capsule (health food stores) w/ syringe (no needle necessary). Got off it after almost a year and was squirrelly for a few nights - it is addictive.

Everyone is different, but I also found:  taken 3x a day, 1 tsp Konsyl (not Metamucil - junk), in small amt juice (it produces bulk), and 1 generic Immodium tab - used to be 6x on that.  Doc also said one acid blocker/day, we're subject to ulcers and high acid output.  And NO coffee, fried food (no McD or KFC, Burger King OK (open grilled), or carbonated drinks. Learn to drink tea (I buy Irish tea) and Ice tea.  And easy on tomato sauce and booze.  Doc said you have to teach the intestine to learn to be a colon - good advice, I found.  Hope it helps.

injected, seriously?

Sorry, no way I'm giving up my coffee. One of the very few pleasures I have left.

Easiest way I could figure to take that stuff without tasting it - pore it in a half cap, then cap it up.

Drink coffee, and you better subscribe to a lot of magazines.  You'll have plenty of time to read them.  On the rare occasion that things kind of slow up for me, I have one cup in the AM, and presto, no more problem with that.

If I need four hours of "safe time", where things are acting up at the wrong time, my Doc also Rx'd Codeine Sulfate 30 mg tablets.  They're cheap.  He prescribes 3x a day so I can get 90 in a bottle.  This lasts me over a year, and doesn't affect my head.  I sometimes take them at bedtime to slow everything down in my gut if I got crazy diet wise.  You'll only get them with a doc that knows your condition, its a controlled substance like the tincture, and a lot cheaper, but maybe not as much punch.  Just a suggestion.

PS... Most of my bad reactions are because I didn't follow a few rules on diet.  I rode to Sturgis last summer, but I watched what I ate.  And watched for portajohns.

Can you drink while taking Tincture of Opium?  I thought it was a big no-no mixing alcohol and Tincture of Opium.  When I took it there was like 3 different stickers on the bottle saying not to drink alcohol with it....not that I was in any condition to be drinking at the time after my loop-ileo.

Neither is gut friendly for now.  Alcohol and opium is never advisable.  Try easily digestible food for now.  Ground meat and chicken were what I found - meatloaf, hamburgers, baked chicken or chicken soup - nothing fried.  Also, a side of Bazmati rice - the others rices are too starchy for me.  Buy Bazmati rice from an Indian store - easy to cook.  Don't forget the Konsyl fiber and one or two Immodium (generic at Walmart) 3x a day (with a little juice).  You have to get weaned off the opium tincture.  Its a stop gap, not a way of life.

PS... Also one acid blocker a day (Zantac - generic, Walmart). Omopriole (sp?) gets me sick.  This worked for me.  Good luck.

Hi, I'm new to this forum and excited I found it!!!

I have accidents while I'm sleeping and then I wake up in a big mess!!!

My doctor says one of my spinchter muscles isn't working and I have had pouchitis for 6 or more months now. 

Does this happen to any of you?

Not that bad.  My mild case was cured with antibiotic.  Limiting eating after dinner until bedtime helps me.  You also might ask your doc for the codeine sulfate in a previous message.  Take it before bedtime, or maybe you need the opium tincture Rx which is stronger.  If your doc isn't giving you some workable direction, if he isn't suggesting this, find another one.  I had a colo-rectal surgeon who stayed with me until life normalized.  What you described isn't normal.

Welcome sdlbutterfly! As I've mentioned above, opium tincture has helped with my nighttime problems.  But I do not have pouchitis but some rectal cuff inflammation. You probably should get your pouchitis under control first. Are you on antibiotics or anything? Check out the forum about pouchitis for lots of advice. Other things I've found helpful are psyllium fiber (like Metamucil) and Imodium before meals.

I am on flagyls and Cipro, since I've been on the Cipro since October it no longer works well. I woke up at 2:30AM with bowel movement everywhere, I had to take a shower. I eat healthy do not drink alcohol. I will talk with my doctor about the suggestions in this forum. I'm so happy I found a place where people understand!!!!!

Metamucil and imodium will definitely help with nightime leakage if pouchitis issues are being addressed by the antibiotics.  I use the metamucil wafers and imodium at bedtime.

I too had the nightime leakage, Metamucil and Imodium did not work for me at all. I take a dose of the opium tincture before bed and try not to eat in the late evenings and that works for me. The opium also makes me sleepy when I take a higher dose (0.5 or 0.6) so I take that before bed and I can usually get away with 0.4 or so during the day.

Sdlbutterfly- hugs sorry about your leakage disaster, I have totally been there! Hugs! Same thing with the flagyl and cipro was working great then one day just did not work anymore. That is why I waited a year to post this cause sometimes things stop working for me too.

I emailed my doctor about your recommendation, waiting to hear back. Waking up covered in your own bowel movement is not something anyone should go through. Your post inspired me that I may have an answer to what I've been going through for almost a year. My family always knows when I start the washing machine in the middle of the night that Mom had an accident.

I don't sell Konsyl psylium fiber supplement, nor do I have stock in their company.  My colo rectal doc's office had samples, he said it was what I should try with Immodium tabs 3x a day (I started with 2 each, total of 6, max per day is 8 tabs - generic, Walmart).  Konsyl is about $20 for a container, a little expensive, surprisingly its sold on Amazon and Bed, Bath and beyond (use your coupon, everyone gets those), and sometimes at Walmart, CVS, etc.  No private label stuff.  If I switch from that 3x a day (before breakfast, dinner, and at bedtime), I know it.  Metamusil I tried once and threw it out.  Try buying it once, less gas. I worked with easy diet to calm things down in there.  I didn't have the extreme situation you have, I'm sorry for your problem, it must be difficult.  When I had the temporary bag, I was in a post office line when it let loose down my leg.  I've been in some bad spots in my life, but that one ranks up there.  I knew a gal with an ostomy who said the hell with it on New Years Eve, when she got home and into bed, she said the bag exploded, she laughed.  This is the only place you can relate these stories and laugh about them...after some time has elapsed.  Keep trying different things and stay positive.

Before My Takedown Surgery I had a bag for 4 months, one day my 5 year old daughter then (now 20) saw my bag puff up, she patted my bag and announced to everyone who could hear "my mommy just farted look" it was embarrassing but now to look back its funny!!! Yes, sense of humor

My Doctor just replied to my email, he will not prescribe the opiate tincture, he would like to prescribe prescription lomatil. This doesn't work!!!

Find another gastro enterologist.  Something that occurred to me, urgency to go often is a lot of gas.  When mine is acting up, I usually have a lot of gas.  I work on elimnating that (broccoli, carbonation, fiber supplement, dairy...)  These are things that create gas - not the cure all, but one piece of the puzzle.

Nerves exacerbate the problem... if your excitable, wrapped tight, etc, you need to work on that.  Yea, I know, simplistic.  But another piece to work with.

Look for a local support group, even the ostomy crowd, go to a meeting... ask around, who's the best doc around.  I see "SD" in your name,,, you from S Dakota?  I'm in the KC area.  I have a great name in that area.  If your guy (or gal) isn't listening, time to change teams.

I'm actually in Northern California and have Kaiser HMO, that is why I was hopeful when I read this post. I eat a very healthy diet, Salmon, Chicken Roasted Veggies. I've gone 13 years with no problems, the last year has been tough. Doctor's like to label if you're in pain, pouchitis is very painful. Thanks for your feedback!!!! 

You sound like you know a good diet. You have something going on.  No fun, but, you been scoped lately?  If its beyond a few weeks of trouble, time for a good doc that knows what he's doing to look and see if Crohns (sorry to say that) or something hasn't taken hold.

Had a biopsy in October, severe pouchitis and 1 sphincter muscle not working. I pushed the biopsy, he just wanted to put me on Cipro without knowing for sure. I've had Doctor since 2000. Although I didn't have to see him for 12 years

If I could find it in pill form I'd be in, smoking it makes me throw up and eating it also makes me sick unfortunately. 

I am in Northern California at Kaiser HMO and my GI, regular Dr and surgeon all are ok with me taking it. You might have some sort of special case that makes it contraindicated for you but if you think that is not the case private message me and I will give you their contact info and you can have your Doctor talk to them about proscribing it and how to do the exemption so you don't have to pay for it too.

He told me my only other choice is an ileostomy, I can't believe he would pick that over opiate tincture, oh well. Thanks, I'll contact you tomorrow. 

Hi, Richard here again. That is crazy to suggest an ileo without even letting you try the opium tincture.  I too have had the nighttime disasters (both with the bag and the j-pouch). I was on Tylenol #3 for a long time. It has codeine which helps with this problem but not nearly as well as the opium tincture.  My gastroenterologist had no problem with prescribing this for me. I hope you are able to change your Dr's mind or find another. (I also use Imodium prescription, but lomotil made me worse)

One other thought: have you been checked for c-diff?

Konsyl is psyllium husk powder with no sugar, etc added to it. I have used it, but I found that my local food co-op sells psyllium husk powder under their own brand name as well as Yerba Prima brand. Both are less expensive than Konsyl.

Tincture of opium is a remarkably powerful antidiarrheal, and in selected situations it can make all the difference, but there are good reasons it's considered a last resort. It's a big deal (from the doctor's point of view) to prescribe it, many are unfamiliar with it, and few would consider it unless they were convinced that a) they had exhausted every other reasonable path, and b) their patient would be a reliable partner in the effort. I do exchange emails with my doctor, but I'd bring up something like this in person during a visit. People vary significantly in how addicted they become, and not everyone has R2's success in walking away from it.

Another option is oxycodone.  I use a small amount every day to keep things under control.  My life is so much better as a result.  Perhaps your doctor would be more willing to prescribe oxycodone than the tincture given that it is more common?

In my opinion, if your doctor still resists then a consultation with someone else is justified.  It is a quality of life issue for me.  Thankfully my surgeon has been very supportive.

oxycodone and opium tincture are both narcotics derived from opium. Both are potentially addictive. It is when these drugs are abused that there is a problem. Some people are more inclined towards addiction than others. 

After my take down surgery, for some time I was going 15+ times a day, then my doc suggested a check for C Diff or some other bacterial infection.  One doc actually said, look at the bright side.  We need a sample, you guys are always ready to go.  Trying to be funny.  Also, concern with opium is that like all narcotics, after awhile, efficacy begins to fade, you have to up the dosage.  I guess I was lucky, I never gave up on changing diet, eliminating things and trying new things, it finally regulated enough to become tolerable.  My wife swears by her elimination of gluten and sugar for IBS and cramps.  She saw an allergist who tested her for a bunch of things, she was allergic to gluten, dairy, chicken, and a number of other seemingly benign foods.  She starts sliding off the wagon on diet, she says she knows it immediately.  Allergist for food allergies.