OxyChronicles

[Vitolo]

Anybody here, is narcotic bowel syndrome a really common thing?

Yes it is.
Some people have it worse than others.
I have been using Oxycontin and Oxycodone for 15 years (although medical marijuana has reduced me from 80 MG 3X daily down to 30 MG twice a day.)
Yes Opioids do constipate, and it is a syndrome.
It is not bad since my dosage has been reduced to a lower level, but I can not take morphine at all!
It blocks me up solid.
I use an altering cycle of Laxatives with stool softeners for a week, followed by drinking lactulose for a week, followed by two weeks of high fiber and stewed prunes at night with Prune juice in the morning.

is narcotic bowel syndrome a really common thing?

It is a real thing, but we make compensatory movements to keep it all tolerable, and provide regularity.
About once every couple of months I must resort to colonics
( enemas- of warm water).
I personally hate the shock tactics being used to make the world fear and reject Opioids.
The doctors tell me that my quality of life has been preserved by accepting the minor inconveniences, and by living in less pain.
I went from 80 Mg 3X daily to 2X daily....
Then I dropped to 60 mg 2X.
Two years later I moved to 40 MG 2X
then a year later I cut it back to 20 MG 2X daily.....
But I was breaking teeth in my sleep, and waking with hands bloody from my fists clenching.
My wife ...out of love and concern told my Doctor what was happening....
They moved me back up to 30MG 2X a day as a compromise, and there I have managed to remain comfortable for years.
It is of utmost importance that one never exceed his dosage .... EVER.
If exceeded, the tolerance level will not let you stay at the low dosage I now take.
Take all meds exactly as prescribed, and never try to exceed to relieve pain in the bad times.
In 15 tears I have never exceeded my dosage, and have been able to stay in control.
ALSO exceeding dosage at ANY time will cause bowel changes, and constipation.

I am afraid it will be used to build a case against prescribing narcotics.

Too many people exceed dosage...
or use the medication to feel high.
It is these individuals, and the numbers of them that abuse that is giving the government the impetus to label a life quality medication as the dark enemy of our culture.
Medical Marijuana used in careful conjunction with your regulated dosages can keep a patient at a low dose and consistent dose, that will sustain a patient through painful times with less constipation.

 

[Aimless Ryan]

@Aimless Ryan how are you doing?

It's been rough. Still no help. I just keep getting weaker and hurting more. I'm very lucky I haven't been seriously injured or killed yet. I don't know how I make it through each day.

 

[hibeam]

@Vitolo thanks for the detailed protocol. I hate the shock tactics too. Why aren't people shocked enough at the struggles of people like @Aimless Ryan to rethink their prohibitions....because they prefer to be shocked by sweeping generalizations than the grimace of a real person in agony. I found http://nationalpainreport.com/ sems to be one entity on our side. Are they?

 

[Vitolo]

Are they?

If not on our "side", they are surely not blinded by the propaganda.
I think they lean toward a much more accepting and permissive attitude.

 

[TeeJay1952]

It seems strange that it is considered your body, your choices for health care then the Doctor has his say and interpretation. Followed by the Politicians saying what the Doctor may do. Now Insurance companies have the final say as to what they cover and pay for. Do what you want but you pay for it.
Which is worse? Being denied what care you wish to receive or a backlog of equality's making limiting what is your share?

 

[chris 71]

i wonder if methadone would work the same ? would it be something the doctors would be more willing to perscribe ? i know there are tons of people in the city i live that are on this methadone program to replace there opioid addictions .

maybe you might get the same results and it might be something they would perscribe ? i really dont know much about it , just thought i would throw it out there. maybe you can ask the doc

 

[Vitolo]

Touchy ground.
Many have reported that if your body has never been addicted to Heroin... not refined synthetic Opioids, then
Methadone makes them quite sick and uncomfortable.
I have never had direct experience with this, however I read that recently, methadone has been used to manage cancer pain and other chronic pain states.

 

[hibeam]

Such a proactive discussion here! In addition to methadone, what about suboxone? What is that story? Wiki-misleadia (just teasing) has this to say:

Buprenorphine versus methadone[edit]
Both buprenorphine and methadone are medications used for detoxification, short- and long-term opioid replacement therapy. Buprenorphine has the advantage of being only a partial agonist; hence negating the potential for life-threatening respiratory depression in cases of abuse.[7] Studies show the effectiveness of buprenorphine and methadone are almost identical, and largely share adverse-effect profiles apart from more sedation among methadone users. At low flexible doses from 2 to 6 mg, however, buprenorphine has a lower retention rate than from low doses 40 mg or less of methadone.[8] --https://en.wikipedia.org/wiki/Buprenorphine

I can't help but suspect control of the pain of others has become such a lucrative commodity, and because alternative practitioners have been so successful at teaching people to become independent of allopathic medicine, that the current state of pain meds is caught in a real corporate "death grip".

 

[chris 71]

Such a proactive discussion here! In addition to methadone, what about suboxone? What is that story? Wiki-misleadia (just teasing) has this to say:


I can't help but suspect control of the pain of others has become such a lucrative commodity, and because alternative practitioners have been so successful at teaching people to become independent of allopathic medicine, that the current state of pain meds is caught in a real corporate "death grip".

not only that , but also the control of addiction treatment as well , up here in canada my family doc has actually been doing a methadone clinic , which he didnt used to . it seems now he cares more for the methadone patients then all his regular patients . and when i say cares more for i dont mean there well being . im assuming its the government money that goes along with each patients visit . free health care here , as is the head counts and collecting the cash .

 

[Aimless Ryan]

When I was out in the neighborhood with my sign one day...

...some dude gave me half of a Suboxone. I believe he said it was 3 mg. I broke off what I would say is about 20% of this half pill. It gave me noticeable relief. The rest of it is still sitting there on my table.

 

[Aimless Ryan]

A few Percocets found their way to me a few days ago; my first opioids in almost a year. Here's what happened.

 

[HerbieVonVapster]

What's frustrating about what's going on is that there are a lot of people whose severe pain has been managed for years with a stable does of meds that have been taken off of them with nothing to replace them. Instead they send them to pain management classes. They are left unable to function the way they had been on medication.

Hits the nail on the head. Post like these need to be shared. Sadly it's swung too far in the other direction.

The media isn't reporting on the growing number of people being denied needed medication. It makes things worse when it forces people to more dangerous street drugs seeking pain relief. Or in more and more case to even commit suicide.

If someone dies cause they longer can face their life in pain by using the last of there pain pills. Did pills kill them or did the policy? If they got bad drugs on the street cause there denied previously prescribed drugs was it the drug or policy?

Sadly i see this getting worse before it gets better. Both the pervious question are happening everyday and both would be added to the growing list of deaths due to opioids. Compounding and worsening the opioid epidemic.

 

[Indigo]

I'm so sorry you're having a shit time. I'm not up to watching videos for disability reasons, but you sound really lonely. Do you have people around you, support, friends?

There's a lot of stigma and confusion when it comes to talking about pain medication. Most people don't seem to be aware that these are all different things:

Addiction
Dependency
Tolerance
Withdrawal
Medication overuse pain

Addiction is when you are using a drug to get high, it's psychological. Chronic pain patients are usually not addicted, but since pain and disability are shitty things to live with, that has an effect on your mental health, so they may be. A friend with a history of addiction has recently been prescribed codeine for pain, and it's going wrong already. From what you say, you don't have an addiction problem with the oxycodone. I'm not sure about the cannabis, and that's up to you, of course.

Dependency is when you need the drug to function, and this is very common with chronic pain patients. It's what you describe. It's not an ideal situation to be in, mainly because of the other problems that can come along with so many pain meds, but no one tells off diabetics for being dependent on insulin. For many people, this is what they need to get on with their lives, and it's why it's so devastating when pain meds are pulled.

Tolerance is when you need to keep raising the dose to get the same effect, and this can be the killer with pain meds and other groups such as benzodiazepines. Since it's so common for it to happen, this is one reason why doctors are wary of putting patients on opioids. Some can handle long-term opioid use at the same dose and it still works fine for them. Others can't, and may be put on higher and higher doses until a doctor suddenly says, "Hang on, you shouldn't be taking that much," and they're stranded. To anyone finding they have a tolerance problem, get help with this, because there is no easy way out. You can't just keep on raising the dose.

Withdrawal is when you have been taking a drug regularly and get bad effects when you stop taking it. It does not mean you were addicted. I had bloody awful withdrawal from gabapentin and didn't have the slightest good effect from it when I was on it, let alone craving it or anything like that.

I'm not sure if I experienced tolerance with tramadol or just needed a high dose to begin with, combined with 2mg diazepam for the initial dose, but I was careful to take it only two days a week to try to minimise this problem. I stopped it a couple of months ago because even at two days a week, the side effects were too bad to be sustainable. It turns out that my fibro pain isn't as bad now I'm off the tramadol, so it looks like I was getting medication overuse pain. This can happen if you take pain meds more than 8 days a month, according to the nice chap on the migraine helpline. It seems to be a particular problem with migraine and headaches.

Using pain meds responsibly is not easy, even if you go in with good intentions and no addiction problems. It would help if doctors approached this with the complexity it needs, rather than making blanket assumptions about addicts and so forth. I had to wait two years with severe PMDD before I got diazepam, for instance, because they don't like handing that out, even though I was only using it about once a month at a low dose. More recently, doctors have left me to my own devices with pain meds, though I'm not sure how far they trust me because I mention now and again that I keep a meds diary to make sure I'm not using it too often. No one has ever really discussed it in detail, and come to that no one has examined me for the pain since an injury in 2000.

 

[HerbieVonVapster]

Withdrawal is when you have been taking a drug regularly and get bad effects when you stop taking it. It does not mean you were addicted. I had bloody awful withdrawal from gabapentin and didn't have the slightest good effect from it when I was on it, let alone craving it or anything like that.

Wow what a well written post the thing about gabapentin really stood out. Having gone thru lyrica withdrawal myself I agree with you 100%. Sadly seems like lyrica and gabapentin is now being used as a replacement for pain medications without concern on there withdrawal issues.

 

[Indigo]

Thank you!

For me the gabapentin withdrawal was six months of hell. After years of various doctors nagging me, I tried pregabalin (lyrica) the other month, and my GP took me off it a few days later because I was reacting badly to it, which was a mercy. Then I saw a neurologist a few months ago and she brightly suggested topiramate, even though I was very clear about not managing with antiepileptics at all well. Nope. Nope nope nope nope nope.

Also she suggested nortriptyline, even though I've been tried on amitriptyline many times and never got on with it. I finally looked it up the other day, and information I have now that I didn't have a few months ago is that I almost certainly have Sjögren's Syndrome, so I have to avoid anything drying. I was frankly relieved to find that nortriptyline is very drying, because I don't think it was likely to help, seeing how the sister drug didn't at all. This spares me however long with side effects I'd have to put up with before they'd agree that I'd given it a good try.

I've ended up learning a lot through the chronic pain community, and meant to mention that they are well worth connecting with. Firstly to learn more about how pain works and how to tackle it, and secondly because being lonely is really bloody awful and having a community makes a huge difference. Especially if you are surrounded by people who don't understand disability and make nasty remarks about "drug fiends" or what have you.

 

[Indigo]

I know plenty of people with chronic pain who find that antiepileptics are good for them, by the way, and ditto tricyclics, so I think it's perfectly reasonable for doctors to try people on them. What they should also do is be aware of how heavy duty these drugs are, in terms of side effects and withdrawal, and stop fobbing people off when they have problems.

 

[HerbieVonVapster]

For me the gabapentin withdrawal was six months of hell.

My doctor was on vacation and replacement doctor has issue with writing a refill. I ended up going off of lyrica cold turkey. Considering was on it for 6 years and at 200mg x3 day. It was worse experience in my life.

I know plenty of people with chronic pain who find that antiepileptics are good for them, by the way, and ditto tricyclics, so I think it's perfectly reasonable for doctors to try people on them. What they should also do is be aware of how heavy duty these drugs are, in terms of side effects and withdrawal, and stop fobbing people off when they have problems.

Having said that I did get relief from some of the neuropathy issue well on it. After going off of it I realized how much it made me a zombie. Not saying it doesn't help. Just scares when it seems like there prescribing this off label, along with forcing people like Ryan off of drugs that worked for him and offer this as a replacement option.

 

[Indigo]

Cold turkey, yikes. And there I was grumbling about a 300mg/week taper, after being on it for a few months (3000mg at most). How long did it go on for?

Something else I've found is that your response to problem meds may change over time. I first had to take a hell of a lot of meds when I had acute calcific tendinitis in 2007. The pain is horrific, I lost the use of my right arm for a month, and I was on the top doses of codeine and tramadol. When I stopped taking them about a month later, I had no problems with withdrawal. A couple of years later I got calcific tendinitis in the other shoulder, not as badly, but I still needed codeine for a month. This time I had insomnia for a week when I stopped, possibly a bit irritable then. I was rather alarmed that the GP told me you can't have withdrawal from codeine. Of course you bloody can!

In 2010 I had my gallbladder out, and unfortunately developed Sphincter of Oddi Dysfunction as a result. I can't have codeine at all now, it causes pain mimicking a gallstone attack. This cuts out the whole opiate group, including morphine, and causes milder problem with the synthetic opioids. If I have tramadol on an empty stomach, it's the same, so I can't take it in the evening, may still get nobbled by it during the day, and sleep badly on it anyway.

This wasn't why I stopped the tramadol, though, it was the way I would be utterly conked out for two days afterwards that was finally too much, and the constipation got nasty. I have it in reserve for if I ever get pain that's at the level where I'm screaming, but actually haven't had pain at that level since stopping. Also I'm exploring triptans for the migraines, the prescription came through this afternoon. I suspect the migraines are too chronic for this, but it's a starting point.

 

[HerbieVonVapster]

Cold turkey, yikes. And there I was grumbling about a 300mg/week taper, after being on it for a few months (3000mg at most). How long did it go on for?

Was over 6 weeks before was able to get more than a couple hours sleep. Been almost a year and still lingering effects. Wasn't doing too bad before this happened. I had 3 surgeries done to repair spine and ulnar nerves and was making progress on recovery.

Since then had to start muscle relaxer again. I can barely walk now and after 9 months of tests informed I have benign focal amyotrophy on top of peripheral polyneuropathy. Have lost use of hand and muscle in arm are already wasting away.

With that along with severe spinal stenosis any other health problems too long to list things been difficult. Had to deal with a doctor telling me he thought might be ALS right before Christmas (wasn't a very merry holiday). He wasn't too far off thou... lucky me it won't kill me just cause hand arm muscle atrophy and hopefully just one limb.

 

[Indigo]

Oof. Not fun. The insomnia was very bad for me as well, and pretty much every bodily system held a riot.

I have a bottle of baclofen waiting for when things are quiet enough for me to try it. Is that the muscle relaxant you're on? How do you find it?

 

[HerbieVonVapster]

Was on Baclofen before they changed it too Zanaflex. Honestly I don't recall the reason they switched it. Been a few years ago that change was made. I was having issue with low pressure but not sure if that was it.

I don't recall any other side effects except made me really really sleepy but it did help.

 

[Vitolo]

Was on Baclofen

I have been on a myriad of drugs for 15 years... since the accident and the coma (5.5 weeks)
I suffer moderate to severe spasticity, which for a time was treated with Baclofen. It was a drug I could not tolerate, and caused me more nausea than I already experience from my brain injury and half colon.
They had to stop it within a couple of weeks of trying it, because it was really bad to me.
Some Medical Marijuana strains have helped with the spasms, and ease the clenching.

 

[Indigo]

How much doffer nice do you find between strains? Do you find some don't help at all and others do?

 

[Vitolo]

Yes.
Some do not help specifically with spasticity.
It is not as clear as Sativa Vs. Indica.
A couple strains that help me with spasticity are Chem Dawg (a decendant of Sour Deisel),
and Blue Dream.
While I love the effect, calmness and lighthearted happiness I feel from White Tiger, it does nothing to help me control my spasticity.

 

[HerbieVonVapster]

A couple strains that help me with spasticity are Chem Dawg (a decendant of Sour Deisel),
and Blue Dream.
While I love the effect, calmness and lighthearted happiness I feel from White Tiger, it does nothing to help me control my spasticity.

Totally agree with effect are different depending on strains. One of the current issue is that there's no common standard. One dispensary's say white widow might be totally different than another's. It's hit or miss on finding strains that help.