How about Paragoric? It is a different formulation (champhorated tincture of opium), and not as concentrated. It may be on your insurance company's formulary. If neither one is, you probably need a medical exception on your prescription (needs to be done by the prescribing doctor) so that a non-formulary drug can be covered. However, it may not be covered in the same fashion as your other formulary drugs.

This is complicated by the moves by the FDA to tighten opiate prescriptions and reduce them. Apparently, it is to reduce abuse by people selling their legally obtained prescriptions on the street. I guess it is a pretty good business for some.

Jan

Jan would you say paregoric is stronger then tincture of opium or is it the same strength just a different opiate.

stone.. when I was using tincture of opium.. I used very little at a time. If I recall I think one bottle lasted me easily 3-4months. So.. even if its not on your insurance..maybe you can splurge if its going to last you a long time?

A quick online search reveals that opium tincture is 25x stronger than paregoric, which is why dosing is so vastly different between the two. One is measured in drops while the other is measured in teaspoons. I figure if you are using the larger doses of the paregoric, they may have very similar effects.

Same opiate, but tincture is WAY more concentrated than Paragoric. Much more likely to cause accidental overdose, many pharmacies don't even carry it at all.

Paragoric is prescribed in teaspoons and the tincture is prescribed by the drop.

Jan

Yes thank you. Ny doctor is working on prior authorization from my insurance to pay for the tincture of opium. I would have paid for it if it was one hundred or two hundred but the darn think is five hundred and five dollars. Thats way to much for me when a few words and paperwork from a doctor can take care of it. Thats why we pay for insurance.

Bootstrap,I was reading your story and wow you have been through so much. I thought I had it bad. Im sure you are really proud of yourself. Stay strong people like you encourage others to fight and keep up hope. Your an example of greater people in this world keep it up.

Stone, good for you for following up with your doctor. Generally, doctors can't keep up with what is or isn't on any particular insurance company's formulary. If it is non-formulary, it needs a medical exception from the doctor (basically indicating that all other options have been tried and this is the only thing left). Often, to get coverage for concentrated opiates, you need to have a terminal diagnosis, otherwise, you need that exception.

Exceptions are not just for opiates, but for anything that is not on their approved formulary. Tincture of opium and Paragoric just are not used often enough, so they've been dropped from many lists and most pharmacies don't keep it in stock.

Jan

Thank you, Stone.

I am reading your thread because I have been dealing with diarrhea lately myself. My pouch was fairly manageable until I stopped the antibiotics... Then it went nuts - frequency, urgency, consistency all got way worse, and I had way less control than I ever had before, regardless of what food I eat or meds I take.

My nurse said this is typical after stopping antibiotics, so I'm just trying to be patient, but looking for something to help spare me in the meantime.

Yes I hear you bootstrap, I would do anything to slow my bm's. I hope my darn insurance ok's. My medicine. I tell you what some people will never understand the meaning of being sick until they get sick them selves. I don't no I just want to feel better. Im just taking it day by day. Im hope we all feel better. It sucks to go to the restroom over and over again.

I know this is an old thread but i need to chime in and ask for support. I've had the j-pouch since April of this year (and two procedures since then for dilation and stricture removal) and had been on Flagyl for three months and Cipro for one (for frequency/urgency) before the dreaded feet/hand numbness reared its ugly head. Went off those two immediately and was put on Xifaxan for two weeks. The Flagyl/Cipro worked well - only 10-12 movements per day but as soon as I went off them the frequency shot to over 20/day and the Xifaxan did nothing. As a matter of fact, the frequencies came with little stool movement (when I was on Flagyl I had decent bowel movements). Now I'm on Opium tincture (3 drops 3x/day) for a week and still haven't noticed a drop in frequency...although my stools are of more substance. Also started back on Konsyl to solidify the stools. Anyway, what's next for me? I'm staring down the barrel of removing the J-pouch and going back to an external bag.
Is it food allergies? Is it a j-pouch that just doesn't like being a j-pouch? I know I don't have Crohn's as they did a Cat scan and blood work to rule that out. Can I take more than 9 drops of Opium per day? Should I add Pepto Bismal or Immodium?
By the way, I had a total colectomy November 2012 due to 20+ years of UC and cancer was starting to begin.

I think it's more likely that the Flagyl caused the numbness than the Cipro. You could, perhaps, retry Cipro alone, which worked well for me for a long time. Xifaxan didn't help me at all, but I'm on doxycycline now, which is also doing the job. I think you need a different antibiotic.

I'm guessing you're treating pouchitis, but you don't say so. Have you had a scope to confirm it? If you are running out of antibiotics that work (or even if you aren't), many here would recommend sharply reducing your carbohydrate consumption - no sugar, minimal starch. Some do this as low FODMAP, which permits rice, and others reduce carbs across the board. Many seem to get good results, but it takes time and determination.

Usage of DTO (deodorized tincture of opium) varies a lot, but you ought to discuss with your doctor before increasing it, IMO.

I did have a scope and it confirmed very mild pouchitis...that was over a week ago. My GI doc said no to the Cipro has it could cause tendon issues (He too said it was the Flagyl that caused the numbness...that I still have to this day, a month after I stopped Flagyl). I'll ask about doxycycline as it doesn't seem like the opium is helping any (along with probiotics). I decreased my sugars back when I had the illeostomy pouch and haven't eaten much (that I know of) since then. I know the Greek yogurt I'm eating has 7-10g of sugars and I do occasionally have a sweet but have switched to fruit (maybe that's part of the issue - natural sugars) and veggies. Man, I hate eating healthy.

I will take a look at the FODMAP but I'm now running out of patience. Getting up 5-10x/night isn't fun and knowing I need to be near a restroom every waking moment (I've gone 12x since I woke up this am and it's only Noon).

Ok so I too had a scope mild to moderate pouchitis. I was put on xifican and endocort. I took the endocort for 2 weeks. I ran out of xifican. Oh the big D, it was like coming out of me. I thought! well the end of the j pouch! I tried everything, in fact, I even made an appt with my surgeon. So, while m waiting for more xifican! my GI wanted me long term endocort. No, that is not an option.So I go into my cabinets and take out every probiotic I had and doubled them and added kifer. It took 4 days but then things settled down. I also had done pentasa in the house and took that. So, now I've just spent $1200 to refill my xifican with my online pharmacy and now I dont even need it! go figure. Oh, I also upped my turmeric to 1600 mg. My surgeon told me to take immodiam. There r lots of things to try? You have no idea how many times I though I would lose my pouch.

John, plenty of folks stay on Cipro long term - the tendon rupture concern is mostly a problem if your doctor is bad at math, since the risk remains quite low while on Cipro, just not as low as off Cipro. If this is the only issue with Cipro for you then IMO you're suffering needlessly.

Doxycycline tends to be used for SIBO (small intestinal bacterial overgrowth).

My doc put me on doxycycline at my request so we'll see if there are any changes. Now, if it truly is only for SIBO then I don't expect it to do anything. As of today I am on 2 TB of Konsyl twice a day, 3 drops opium tincture 3x day, doxycycline 1x day and probiotics 3x day. Scott I will inquire about Cipro again.
Not sure what happened in the last 24 hours but I was able to sleep all the way to 3am this morning before having to go to the bathroom...and I've only gone once since 5:30! This time yesterday I had gone 10x. This is the best 13-14 hour stretch in months for me. Only 4 BM's since 10pm last night.

Doxycycline can cause an unpleasant bellyache, and unfortunately it's supposed to be taken on an empty stomach. In my case it worked out to soldier through the discomfort, which passed after a few days. I find Cipro easier to take. YMMV.

My surgeon on told me augmentin is his choose of drug. Dixocyline never did anything for my pouch. I've been on it recently for a few sinus infections and I think it caused the imbalance? Never cut down on my bathroom trips which I found strange. Good luck! hope it works!

I was just wondering if all of you are taking a good probiotic?

I take 2 probiotics. One Culturelle capsule in the mornings. And in the evenings, I take one small bottle of DanActive.

Personally, I think one cup of non-fat yogurt at breakfast time, helps, as well.