16 replies to this topic

[enteric nervous]

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i wish to withdraw this info. too much for some people to handle

Edited by enteric nervous, 25 August 2009 - 12:57 PM.

[Thai]

I personally don't use opioids as a method to control my D but have had experience with the constipating effect they have.Glad that you have found what works for you.Thai

[Nikki]

I think its a terrible idea.Of course it works! Purely due to the side effects of opiates.They are also addictive, and side effects include death. You also run the risk of tolerance to it.You are playing a dangerous game!

[Kathleen M.]

One other issue, particularly with the stronger narcotics is that over time in some percentage of people the narcotic will eventually make the gut nerves extremely pain sensitive. You can end up with a lot more pain than you had from the IBS as a side effect of the narcotics.Unfortunately that makes the take more to get the same effect and have a harder time stopping them thing much more likely. I can't predict who will develop Narcotic Bowel Syndrome. Some people seem to be OK for very long periods of time and other people can get it from doses and lengths of treatment that are not uncommon in the more traditional uses for narcotics. (like an injury that takes awhile to heal up so needs a couple of months of pain relief).If you notice that your pain is worse than ever when the narcotic wears off you are developing Narcotic Bowel Syndrome. That symptom bounce back where it is worse after the meds wear off than it ever was before you took the drug is a hallmark of this problem. The problem with IBS is that it lasts a long time and if you have any risk at all of getting NBS you will probably take the narcotics long enough to set it off. Once it starts the abdominal pain is much more difficult to control than it would be if you never started and all too often people prefer the narcotic roller coaster and can't get off of them.Be very very careful with mixed narcotics and acetaminophen. The toxic dose of acetaminophen isn't that much higher than the dose you need to get relief and a lot of people end up with severe liver damage as they need to increase the dose of the narcotic part of the pill to get the same effect. They've discuss banning the mixed drugs because too many people end up with really bad and potentially lethal liver damage from the combination drugs.There is a much safer drug on the market that is all the anti-diarrheal side effect of the narcotics without the making the pain worse over time or addiction risk. It is called Imodium. Now it doesn't work for everyone, but people should try that before trying to talk their doctors into something that may cause a lot more problems later on than it fixes in the short term.

[enteric nervous]

Indeed, we take all medication for their side effects. A potent medication like this is dangerous and requires my responsible use of a relatively small dose. Any modification requires a discussion with my doctor. The chance of developing the conditions you suggest would require some sort of loss of control on my part which is under my constant monitoring.Kathleen: you raise what i think is the biggest danger, NBS. I did much research on this prior to my second visit to the GI. The science behind it makes sense, but dont see it actually happening that way very often. In fact, I have been unable to find many studies on this that show a sizable incident rate of NBS among users of a therapeutic low dose. I am worried that Doctors are vaguely aware of this very scary condition with few studies behind it and rule out opioid treatment immediately.Immodium does not work for me. While it will stop the D temporarily, it makes everything quite painful and uncomfortable for that time. Your notes on acetomenephen are a good reminder. It's an ugly drug. Again, this is a low dose. If I were going in for 10-15mg of oxy and 1g of acetomenephen, then i dont think the treatment is working anymore.

[Kathleen M.]

There is a problem that we really don't know the frequency of which this happens, and it seems to be something that isn't easy to diagnose and may often be overlooked.From the recent papers out of UNC it does sound like the biggest issue is once it happens it can be quite difficult to treat and while you may now feel you will stay at that same low dose forever, so do most people that end up in rehab to get off the pain meds they got addicted to. No one sets out to take huge doses and have major problems, but often that "oh I just need a little bit more today" starts things down a pretty bad road.It is always a good idea to exhaust all other avenues (have you tried questran for diarrhea? Have you taken anything at all for the pain other than narcotics?) before even thinking of going down this road and then you need to be closely monitored to make sure that you get taken off them as soon as any problems arise rather than only after you have a major problem with them.Starting out your IBS journey by insisting you need narcotics probably isn't the best way to do it. Even if they helped someone else. Getting a drug seeking label before you even try anything else often isn't good for the doctor patient relationship.It may be worth consulting a pain management specialist to see if there are any other options as this really is the option of last resort.

[Borrellifan]

Well, aren't anti-depressants used for people who are depressed? Yet GI's prescribe them to people with IBS for there side effects. Doesn't Immodium, Lomitil, Lotronex and other drugs possibly have dangerous side effects? Of course they do! Problem being is that there really is no other choice except to suffer. Do you want to try and live as normal as possible or be cooped up in your house all day worried about when your next bowel movement is going to hit? That is the question most of us are faced with daily. Unfortunetly this is the situation we are placed in. The medical profession is a huge let down and has no answers for people like us who suffer from this.I personally have no problems with people who take matters into there own hands to try and get there life and jobs back. If its prescription pain pills that do the trick then so be it. Its there choice to make and i think its pretty rude to judge someone on there choice and tell them not to. They know the dangers and obviously take that into consideration.Do you have any better advice?

I think its a terrible idea.Of course it works! Purely due to the side effects of opiates.They are also addictive, and side effects include death. You also run the risk of tolerance to it.You are playing a dangerous game!

[Kathleen M.]

No one is saying do not ever seek any treatment, or everything else is harmless, really.Just it usually isn't wise to start with something really dangerous. I do think a few people have really given everything else a really solid try and actually do understand the risks and will stop the narcotics the second they do more harm than good. Unfortunately a lot of people are too hooked to be able to stop when they should.Pretending there are not real risk to this course of action isn't fair. Sure everything has risks but few people get really angry about anything else when risks are listed. No one seems to want to say people are lying when they say antispasmodics can cause dry mouth. But everyone who says narcotics can be addictive or cause problems is a bad person and get attacked for it more often than not.I can't believe I'm a bad person because I think people should try the less risky things first and leave the really risky things as a last resort and go in with their eyes open to ALL the risks and know how to recognize when they start doing long term harm even with short term gain.Oh well, if that is what being bad is, I guess I'm bad. :(Hopefully "taking things into their own hands" does not include getting narcotics behind your doctor's back. It is dangerous enough if your doctor prescribes them and has you on a strict monitoring program. Getting the drugs from the black market where you don't have a doctor and a registered pharmacist involved is extremely risky no matter which drug you get. If they don't need a prescription to fill your order you can't be sure what you are getting.

[Borrellifan]

My response was targeted to "Nikki" not to you Kathleen. I never said you were a "bad person" or that you shouldn't be cautious when taking these kinds of medications. Of course you should be cautious but at the low dosages that these medications are being prescribed it would be rare that someone would become addicted, no? Unless you continually up the dosages. I'm not sure where your getting this "black market" stuff from either but i did not imply or reccomend to anyone to go that route. What counts is that these medications are working for the OP when nothing else has and yes, maybe they aren't the best route to take but if there are little to no other options out there?

No one is saying do not ever seek any treatment, or everything else is harmless, really.Just it usually isn't wise to start with something really dangerous. I do think a few people have really given everything else a really solid try and actually do understand the risks and will stop the narcotics the second they do more harm than good. Unfortunately a lot of people are too hooked to be able to stop when they should.Pretending there are not real risk to this course of action isn't fair. Sure everything has risks but few people get really angry about anything else when risks are listed. No one seems to want to say people are lying when they say antispasmodics can cause dry mouth. But everyone who says narcotics can be addictive or cause problems is a bad person and get attacked for it more often than not.I can't believe I'm a bad person because I think people should try the less risky things first and leave the really risky things as a last resort and go in with their eyes open to ALL the risks and know how to recognize when they start doing long term harm even with short term gain.Oh well, if that is what being bad is, I guess I'm bad. :(Hopefully "taking things into their own hands" does not include getting narcotics behind your doctor's back. It is dangerous enough if your doctor prescribes them and has you on a strict monitoring program. Getting the drugs from the black market where you don't have a doctor and a registered pharmacist involved is extremely risky no matter which drug you get. If they don't need a prescription to fill your order you can't be sure what you are getting.

[M&M]

I think the concern here with the OP is that they didn't seem to have tried much else. They haven't had IBS for very long (2 years), and jumped onto opioids pretty quickly for a treatment. That is the concern, I believe. It is a pretty risky, dangerous and extreme treatment protocol to start off with. Plus, lots of people new to IBS come here to visit, read and learn. It's important for them to know that opioids are not the particularly best option as a first try at treating IBS. If these kinds of meds weren't dangerous long-term, there wouldn't be such strict monitoring of them. I think most of us here would prefer to see someone start out trying other treatment strategies before thinking about using opioids for the rest of their life.

[Kathleen M.]

I wasn't sure what exactly you meant by it is good when people take matters into their own hands.I am for patients being empowered, but that doesn't mean they should demand their doctors must give them something or find some other way to get it. Especially when discussing something addictive (and really most addicts start with low doses that anyone would guess is safe) and something that is typically sold in those spam emails where you need no prescription to get whatever you want.I do not see how you can see my opinion as OK and Nikki's as unacceptable if we are basically saying the exact same thing.Even if you start at a low dose it is a medication that humans build tolerance to and that is part of the problem. No one starts out at the doses you need to be hospitalized to safely stop. Well other than people in the burn unit or other severe traumas, but they don't send you home until you are past the point of needing large amounts of narcotics and your wean down is monitored.I usually avoid these threads as someone always seems to need to tell people that you can't say they are dangerous and suggests more people need to be demanding a last resort treatment as it just can't cause the problems that people warn about. I think I need to go back to that even though I got back in because we had much better information about Narcotic Bowel Syndrome, especially how to tell if you are one of the people prone to that.

[nw0528]

When I had to take my students on a three day, two night bus trip to NYC, my GI gave me a prescription of liquid opium to titrate as needed and take as an emergency if I had D that the Immodium I took as a preventative was not working. It stayed in my purse the whole time and was not needed. When we travel to China next year to adopt our daughter, he will write another prescription for this...to bring (along with other meds such as Immodium, Bentyl, Xifaxan for food borne illness,) as a "just in case." I'm glad that most of the time Immodium works for me, but good to know there is this in case I ever have an emergency situation (bathroom facilities in China and IBS-D do not go well together!). Nicole

[Kathleen M.]

I wasn't going to come back in here, but opium based drugs come in different strengths.Opium is usually a lot weaker than most of the synthetics.Oxycodone is 15-20 times stronger than the codeine most people tend to talk about for diarrhea, which is why it kind set off my worry button.Opium tincture is mild enough it used to be sold over the counter. People still managed to get into trouble (or got so used to it they moved onto harder stuff).If you have to use opium derivities other than Imodium or Lomotil stick to the weakest one possible. Don't start with the strong stuff.

[enteric nervous]

My initial post was not very specific on what did not work. 2 years is long enough, and i have tried all the currently favoured pharmacological treatments: imodium, the tricyclics, ssris, snris. oxycodone, by happenstance worked without question. the others did nothing. i did not insist any doctor start me on narcotics. the first GI said no. I asked another and he said he'd be willing to try it. He also suggested bentyl.for me, bentyl works 70% of the time. 5mg of oxycodone works 100% of the time. i know the dangers. lord knows the MD and the pharmacy make sure i know the dangers, but im able to take the required dose as directed. one does not need to be hospitalized to d/c oxy. it can be done in a titrated fashion under doctor's supervision. reading everything i can, i get the sense that many sufferers consider this a life-long problem and it may very well be. it doesnt help when many doctors dont understand IBS and are even less willing to learn about possible treatments. suggesting that i've "only suffered for 2 years" kind of enforces this belief. It doesnt have to be this way. i offer my experience because if i didnt know about this, id have no idea what i'd do. it's one of the most time robbing, embarrassing, painful d/o i know of. i'll risk opioid addiction to end it. I agree with Kathleen in ever way though, if youve recently been dxed with this, try the conventional therapies first.

[Kathleen M.]

Opiates, especially the stronger ones, can have the side effect of being severely constipating. That side effect is well known. They often have to prescribe stool softeners or laxatives with them, especially when people are taking them for a surgery and they don't want you straining.That constipating side effect is why Imodium was developed. It is designed to do that side effect without getting people high or blocking pain. It also has a lot lower ability to induce tolerance or set off increased sensitivity in the pain nerves of the gut. It doesn't really get into the pain part of the nervous system in the gut or to the brain's pleasure center.If you discuss opiates with a doctor again they may be more open to low dose codiene than a drug that has a high black market appeal (oxycodone is called "hillybilly heroin" for a reason)

[Borrellifan]

Well then i disagree with you as well. You may also be partly delussional for suggesting i tell people to buy drugs off the black market.I think its incredably rude to come into this thread and put someone down like "Nikki" did just because they chose to get on with there life and take a prescription medication. You continually come into these threads and preach about natural this and Indian that but for many of us who have been through the ringer with these so called natural remedies they simply don't provide any reliefe. Or the reliefe they do provide is minimal at best.The OP mentioned that he/she has suffered for 2 years with this condition. I'm pretty sure that qualifies them to choose another route if what they have tried hasn't worked.The same "addictive" and "tollerance" theory could be said for Immodium and lomitil or any other prescription drug yet many people on this forum tout these as perfectly acceptable. The only difference is the long term affects of Immodium and such haven't been studied as well as pain medications. Obviously Immodium's effect is going to lessen over time and people are going to continually up there dossages. Isn't this potentially dangerous as well?We can argue about it all day long but the fact of the matter is people are either going to suffer or they are going to use whatever supplement or drug that allows them to get on with there life and live as normally as possible. We all have the right to choose either option and I for one will not put someone down or try to belittle someone for there choice. Don't worry im sure this thread will get locked like the many others you've hijacked.BTW this particular forum is called "prescription medications for ibs" If you want to talk about natural remedies and Native American hokus pokus maybe you should try another forum?

I wasn't sure what exactly you meant by it is good when people take matters into their own hands.I am for patients being empowered, but that doesn't mean they should demand their doctors must give them something or find some other way to get it. Especially when discussing something addictive (and really most addicts start with low doses that anyone would guess is safe) and something that is typically sold in those spam emails where you need no prescription to get whatever you want.I do not see how you can see my opinion as OK and Nikki's as unacceptable if we are basically saying the exact same thing.Even if you start at a low dose it is a medication that humans build tolerance to and that is part of the problem. No one starts out at the doses you need to be hospitalized to safely stop. Well other than people in the burn unit or other severe traumas, but they don't send you home until you are past the point of needing large amounts of narcotics and your wean down is monitored.I usually avoid these threads as someone always seems to need to tell people that you can't say they are dangerous and suggests more people need to be demanding a last resort treatment as it just can't cause the problems that people warn about. I think I need to go back to that even though I got back in because we had much better information about Narcotic Bowel Syndrome, especially how to tell if you are one of the people prone to that.

[Jeffrey Roberts]

enteric nervous - I honestly think that you should find a new doctor. Using narcotics to control IBS is no solution. It is simply masking the problem and could potentially create a much more dangerous situation. I do not believe that the benefits of taking narcotics outweighs the risks and I believe that the majority of medical professionals will also agree with that.To me this whole threads highlights the extreme problem that there are few treatments available for severe IBS sufferers, or worse, few treatments that doctors are aware of. The moderators on this site have gathered a great deal of factual knowledge. We are all here to offer sound advice. Please keep that in mind.My advice...Lotronex, which is available throughout the United States, is available under a restricted access program. It has been reported as being very effective for many people with severe IBS-D. I strongly recommend having a conversation with your doctor about this.Many antidepressants provide quite adequate relief for a great many IBS sufferers. The medication duloxetine hydrochloride (Cymbalta) is quite a different type of antidepressant. This too has been very helpful for some IBS-D sufferers.Jeff