For those not finding a way out yet...I remember a talk with my surgeon in the hospital, he talked about food allergies aggravating the problem. He said he could be shot by the AMA for saying it, but one weird item is that smoking alleviated the problem for some - tobacco and weed. He emphasized he wasn't promoting lung cancer over this problem, just raising the point that nothing you intake is outside the box. How I processed stress was another biggie. Learning how to cope with stress is always on the table. Just throwing some things out there that may help even one person.
Originally Posted by r2 in ks:
Also, concern with opium is that like all narcotics, after awhile, efficacy begins to fade, you have to up the dosage.
With respect to pain relief (and getting "high") then yes, that is correct. However, I don't think that holds true for peristalsis.
IMO we shouldn't misinform people by saying that taking medications, such as tincture of opium, Norco/Vicodin (hydrocodone) or oxy blends, for pain and/or j-pouch performance are going to become addicted, therefore causing them to need increasing doses. If you have not taken a medication like this long term for pain and/or j-pouch performance problems please do not judge those of us that need to take them. I've been taking Norco for 4 years and 4 per day is the maximum dose I am allowed. I normally take 2 per day unless I am having problems that cause more pain and then I take more of it. I don't get "high" or use them to get high. I don't notice anything other than decreased pain with I take a dose. IMO that is what makes people become abusers. If my pain disappeared I would need to wean off of Norco just as I would need to wean off of an antidepressant, etc.
I'm happy for everyone that has their j-pouch function optimized by their diet, probiotics, Metamucil, Loperamide and whatever combination helps them achieve it. Many of us have also tried and continue to try a myriad of different things, including just about everything suggested on this support site, and still have pain/leakage/too many BM's etc.
They are powerful prescriptions and should not be used for anything other than they are prescribed for.
If anyone needs to use daily narcotics to be able to function at home, work and in life please don't consider it a failure in your character. I don't get "high" from my pain medication. The problems occur when people use these medications for the wrong purpose.
Well said!
No judgement, making suggestions on diet changes and food allergies for people trying to find an alternative To medication. I took it for over a year And I never got high on it, but I did have a few rough nights when I got off of it.
It's not a character judgement to pay close attention to the characteristics of any medication, including its potential for harm. Medications are generally a tradeoff between their positive effects and side effects. Using opiates precisely as directed reduces the potential for some of the consequences, but it doesn't disappear the side effects and risks.
Some people who takes opiates every day will have problems with addiction. This isn't because of their character. Some people will have no such problems, and that isn't because of their character, either. Any medication should be used with eyes wide open. For best results, stay attentive to both the benefits and the risks, without exaggeration in either direction. The chemicals carry exactly the same risks even if you genuinely need them.
I was reading the negative comments that can result from using these medications and simply wanted to present the positive side of these medications. If you can take 3 drops of something and reduce. your BM's from 20-5 per day that is a win. If you've been taking the same dose consistently you will not turn into a drug addict 
Hey All,
Thought I'd chime in with my 2 cents. I was on Norco for 4 years and using it for reducing bathroom visits as well as pain from occasional flares. It was easy until my GP got concerned that I had been on them too long. In the back of my mind I was also concerned but more scared of getting off of them. I did some research into other options and being in California the medical marijuana option seemed like a good one for me. After trying out a number of strains and ingestion methods, I discovered low THC - high CBD edibles. These are amazing. No high, just medical benefits. You can also vaporize if eating isn't your thing. I am now off both Norco and Xanax thanks to CBD and I have to say I feel great. The CBD works on inflammation, slows your bowels and is great for sleep. If you have really bad insomnia, adding a little THC (the Indica variety) does the trick. There are a ton of options like gum, oil, tinctures, taffy, brownies, etc. the best brands so far for me have been the High CBD Cheeba Chews (pink box) and the Bhang hemp oil gum (great for daytime/work). Anyway, I thought sharing my recent experiences might help. Feel free to reach out directly if you have any questions!
Oh and I almost forgot, they also have topical creams and lotions that are AMAZING for those of us with secondary inflammation like arthritis. I get it in my wrist pretty bad occasionally and it knocks it out quick! - k
K: Thanks for this info. Unfortunately, we still can't get it in NY. My understanding is that a medical marijuana law has been signed by the governor but they still have not worked out the details about how to implement the law. IBD is one of the diseases that it would be approved for. http://www.health.ny.gov/regul...s/medical_marijuana/ for anyone interested.
I have never herd of that. I take Belladonna/opium suppositories every 12 hours. I had the same systems as you. It was like labor pains that would come and go and I was leaking all the time with many accidents. My local GI doctor did not know what to do went to Cleveland clinic and had a scope and was told that due to so many cases od pouchitus over the last 15 years, that my J Pouch had become weak and that caused the painfull spasms and that caused leaking. It was very strong at first but I got used to it but I have to lay on my left side for an hour in middle of day. At night I take it and go right back to bed. It has given me my quality of life back. I have tried to go off it a couple times and I end up sick like I was before I started taking it. I have 4 dollar co pay buy without my ins. it would be 1200.00 a month. I could never pay that. I have been on it for 2 years now. My last visit they talked about using that as back up and trying valium suppositories. Anyone herd of that? I am going to research the opium you are talking about. Thanks for the information.
Frances
Originally Posted by r2 in ks: Feel for you, I was in church when my bag opened,
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.
Originally Posted by kabbage:
Hey All,
Thought I'd chime in with my 2 cents. I was on Norco for 4 years and using it for reducing bathroom visits as well as pain from occasional flares. It was easy until my GP got concerned that I had been on them too long. In the back of my mind I was also concerned but more scared of getting off of them. I did some research into other options and being in California the medical marijuana option seemed like a good one for me. After trying out a number of strains and ingestion methods, I discovered low THC - high CBD edibles. These are amazing. No high, just medical benefits. You can also vaporize if eating isn't your thing. I am now off both Norco and Xanax thanks to CBD and I have to say I feel great. The CBD works on inflammation, slows your bowels and is great for sleep. If you have really bad insomnia, adding a little THC (the Indica variety) does the trick. There are a ton of options like gum, oil, tinctures, taffy, brownies, etc. the best brands so far for me have been the High CBD Cheeba Chews (pink box) and the Bhang hemp oil gum (great for daytime/work). Anyway, I thought sharing my recent experiences might help. Feel free to reach out directly if you have any questions!
Where do we get those? I'm in Southern California. Thank you!
Thanks Gentle Now,
I live in a state that's only approved the oil type of marijuana for children with a certain type of epilepsy. The problem is there is no place to purchase it. I assume their parents need to go to a state that recognizes their prescriptions.
Depending on the state I usually have more than one medical condition that would allow me to obtain a prescription if I lived there. Narcotics are very cheap compared to it but edibles are better on our livers.
I would like to try low THC - high CBD edibles. We might be visiting relatives in a state that doesn't require prescriptions soon. I will know what to look for, if we ever get there. I currently don't feel well enough to travel. It sounds like maybe I could feel better after I got there!
Thanks for the information!
It's ridiculous that some people still hold on the thought of evil weed when alcohol kills way more people than weed has in its whole history. There are so many uses for cannabis it's unreal.
It's just flat out stupid to keep it illegal. Keeping old laws that are so outdated in this day and age... is hurting the people that need it. But the fools that surcumvent just to abuse it keeps it that way. They prescribe so many other drugs that are way worse than this. I will never understand what is going through people's minds when it comes to cannabis.
It's out there and has been for hundreds of years. People are gonna use it legal or illegal.
It's a stupid argument. Decriminalization of it would not hurt anyone. In fact it would help keep people out of prison for a stupid joint. Our prisons are filled with it. We pay for that. In more ways than one.
Should be filled with people that use alcohol and have dwi's more than once. And have actually killed or maimed and injured people with drinking and driving. But they let them loose to do it again and again. I could go on. It just makes me angry that the people it could HELP CAN'T GET IT!
They just keep saying there is no medical use for it and that has been proven wrong through its use over and over again and again.
Sorry for the rant.
People just need to wake up.
It's just flat out stupid to keep it illegal. Keeping old laws that are so outdated in this day and age... is hurting the people that need it. But the fools that surcumvent just to abuse it keeps it that way. They prescribe so many other drugs that are way worse than this. I will never understand what is going through people's minds when it comes to cannabis.
It's out there and has been for hundreds of years. People are gonna use it legal or illegal.
It's a stupid argument. Decriminalization of it would not hurt anyone. In fact it would help keep people out of prison for a stupid joint. Our prisons are filled with it. We pay for that. In more ways than one.
Should be filled with people that use alcohol and have dwi's more than once. And have actually killed or maimed and injured people with drinking and driving. But they let them loose to do it again and again. I could go on. It just makes me angry that the people it could HELP CAN'T GET IT!
They just keep saying there is no medical use for it and that has been proven wrong through its use over and over again and again.
Sorry for the rant.
People just need to wake up.
Great to see all the suggestions. I have not tried the marijuana products but that is something to consider discussing with my doctor. My primary concern is the potency and dosage. With the opium tincture I can be really precise in limiting my dose to the exact amount that I need and after the initial first month I never feel high or spacy or anything like that. I work a very focused and intense job and cannot be out of it. It wears off every four hours so I can take just the minimum needed and save the larger dose for bad days.
As for addiction and dependency. The way it was described to me is that we are dependent. Which means we take the same dose every day, we do not chase the "high" feeling as that goes away but the efficacy of the drug then remains. We would need to taper off if we were to stop taking it but at this low of a dose there should be very few long term side effects.It has been studied in double blind placebo controlled studies.
Addiction would be when someone takes more and more instead of using it medically. Opium does run the risk of overuse but when used properly at this low 10% suspension should be able to be used by most people. In some countries its actually used to treat addiction. There are several papers out there on this.
For more information go to Google Scholar and type in "opium tincture"