# Pain medication and addiction in Crohn's Disease



## xrayzerase

i was just wondering if anyone else here has experienced getting addicted to a pain med? (like codeine)-and-if so--what do you use for pain now? (if anything)
i got addicted to tylenol 3's (tylenol w 30 mg codeine). i had been taking them for awhile then-(starting with shingles-one small nerve was in pain along eye--but-that one little nerve caused enormous pain-worse than my migraines)
then-i started using it for migraines til i got hooked. anyway-now-at times-i still get headaches. i am seeing maybe dehydration can maybe be in part what at least triggers a migraine..i don't know. but..the migraine meds scare me (as i am already on other strong meds)
the crohn's stuff -i worry if i feel pain again: well--what do others do? if in pain -and if not able to take narcotics? just deal? so far -i don't need anything for the crohn's-(though the heartburn is hard to cope with--at least the diarrhea almost gone-(still have quite a few bm's a day tho) -and some ab discomfort.
just-sometimes i wonder if the shingles/crohn's and endometriosis -and even migraines-all somehow relate (immune trouble)--(sorry-guess that is another topic)
but my key thing: it seems that if one has one crohn's-it tends to involve other stuff too (like headaches..and other messes--which= sometimes: pain) just..really wish i could take a pain pill at times (legitimately need one sometimes..)


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## Skinsfan1229

There are a lot of meds without codeine. Do you even need something that strong if you were only taking t3's in the past? Its highly unlikely for someone in real pain to get addicted also.


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## xrayzerase

i guess maybe "pain" wasn't the best word...even the worst migraines : "discomfort" is probably a better word..
all i know is i got hooked on those t-3's in the sense that i couldn't go through a day without them..and i was slowly needing (or wanting--was hard to tell) stronger relief..which i knew was not a good sign.
i can handle discomfort--but-sometimes it can get bad enough to want relief -so..not sure..
(ps: sorry if this isn't totally related to the ibd---but..i guess -sometimes it is hard to know where anything fits any more ..just-this whole mess can get frustrating..and while i am glad to have finally found out why i was having so many bowel problems (esp diarrhea) for so long..and i am lucky it was caught at mild stage-the diagnosis is still messing with my head.


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## Skinsfan1229

Oh no problem about posting. 

I understand now, I guess I wasnt realizing it was migraines. My Pain management doc gives me something called Fiorinal (the one without codiene, its made both ways), I get methotrexate weekly, and it gives me headaches for days. Finally he gave me this when I told him about it and within 20 mins it was gone, they work pretty darn good for me actually.


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## GNC Crohn's Man

Remember their are two types of addiciton... First is the mental addiction... You crave the medcine because it makes you feel good and better... Then their is the physcial addiction that your body craves the susbstance in order to help keep your body better sedated and in a healthier state... 

Remember if you are having intestinal pain then thier is only so much you can do... 
You can not take NSAID's they will cause your crohn's to flare...

http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202743.html
If you have active inflamation in your bowels then you CAN NOT have narcotic based pain meds... 

Anything that is narctoic based will cause intestinal slowing and blockage and will only make the problem worse... You may feel pain free, or at a lower amount of pain for a few hours, but be in even worse pain 4 hours later... Thus you take another pain pill to killl the pain that the pervious pain pill caused you as it passed through your body... Very fast way to get addicited, hospitilized, or even dead if you do this... Yes your intestines can rupture.... If you have lots of pressure (if you feel super bloated all throughout your intestines and stomach) then do not take a narcotic based pain med. Very much so if you are then going to take a phengran and try to eat (you may be starving due to a high prednsione dsages). If you do this then your intestines can rupture... If your instestines rupture then well you will either die or be live with a very very very not pretty pitcure of what is left of your intestines.. 

I would try asking your doc for valium based antistress meds and muscle relaxers for the pain... Make sure he gives you a small dosage and keeps a tight leash on you though do to your addiction problems.... Another "pain pill" would be Darvociet... It is mainly tylenol with a very small dosage of sysnthitic narcotics in thier... It will not get you "high"... It basicly just feels like taking a slightly stronger tylenol... Because that is all it is. This medcine is special though... It has your tylenol in it and the slight narcotic companant your body is demanding... It will also NOT SLOW DOWN YOUR INTESTINES! So you can take it even if you are having a flare up.... 

At home for the crohn's I find that if I shower my sides for about 20 min or so with hot water it helps to relax all of my abdominal muscles and helps with the pain... 

Again my pain comes in waves from the crohn's due to food passsing through narrowed areas of the small inestines. Some of this narrowing is from scar tissue some of it is from inflamtion.... The only way to know if it is scar or inflamation without having surgery is to go and have a full abdominal CT scan done with contrast... If you ask them then they may or may not have to do a barium enema along with this... It just depends on whither or not you have ever had any inflamation on your large bowel... They take this reading and test before they began adminstering IV corticosteriods.... They will then get you to take that same test before they want you to go home.... All of your inflamtion should be clear due to you still being on the IV steriods (much more potent and higher dosage than the oral steriods) ,so the pitcure they see of your intestines is what it is... It will look like how it should look with no inflamtion. The blockages and narrowings you are seeing, and your doc is telling you about are sections of scar tissue... These can only be removed by surgery... Once your scar tissue in an area reaches a certain point that it becomes a permenant/semipermnenat point that is when you will have to have surgery in order for that section of your intestines to be removed...

If you don't mind me asking I would like to know the active state of all of your medical conditions, your treatments, your meds, and types of docotrs you see and what tests they do on you regular bases.... Some of your meds for your endometrosis are probably setting off your crohn's and vice versa.... So manging the pain is just a short bus stop on this road... If you want me to explain more then I can... I'm around.... A lot.... My mental state varies from being sharp as a tac to punch drunk at times due to the medcine I'm on though... Granted I'm still very intelligent while drunk but my already bad typing/grammer skills are not helped by the matter... 

Also remember if you ever feel your in pain, or alone or something else then call a friend and get them over there to take care of you... You should never have to fight this battle alone.... If you do then you will have nothing to look forward to but pain... Life is about looking to improve and enrich your life and the lives of the others around you... It is not about you suffering every day simpley so the next day you go and suffer more... 

So talk to your friends, set goals, make plans, even if you know you can't do them. Life is about living it. Always look for that silver lining no matter how dark things get... You will get better eventually and you will be stable... Otherwise you will continue to degrad and your body will fall apart. Then you will die and be at peace... Either option is what I hope for...


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## Skinsfan1229

I see you have narrowing areas I can see why you wanted want to take but so much narcotics, because it slows your bowels and can make you constipated. But I believe that most of us have diahrea and not constipation, I realize some do though. 

For me I can take say 1 or 2 vicodin a day and it will slow my bowels so that I am more formed...which helps a lot considering I have an ostomy. 

I was going to offer up that you should ask about something like levsin, an anti-spasmadic instead of pain killer.

Do you ever go to the ER GNC crohns man? The reason I ask is because almost 100 percent of the time if your in pain they are going to give you a narcotic, atleast in my experience, they've never given me something that isnt.

On other forums we've actually had a discussion of the "narcotic energy", might be a good thread to start...


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## GNC Crohn's Man

Unless your in "real pain" they give you Toradol now... It is a strong NSAID and not addicitive... It is not safe for long term use though....


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## Skinsfan1229

Yea that doesnt work for me. They always try to force it on me and I explain to them go look at my chart you'll see it does nothing! lol. Its more of an anti-inflammatory. I've had them try to bring me this one time when I was in some serious pain and they would not give me any actual pain meds, I got right up out of my bed and told them to transfer me to another ER or I'd be calling an amublance to pick me up. They brought it right in then! you just have to threaten a little sometimes!

does the toradal work for you?


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## xrayzerase

gncchrohnsman:
thanks 
i guess i wrote that when on edge-worrying about stuff..and-sometimes i am not clear how addicted i was...but..i do know it is something i have to be careful with..
um..active stuff..
crohn's (still not out of flare-up) but entocort seems to be helping. i see my gi on the 21st.
the endometriosis/gyn stuff is also mild-i take birth control and it keeps the ovarian cysts etc from forming. (none since my op about 6 ot 7 years ago (myomectomy) also-no fibroids have returned. (my grandmother and aunt both had hysterectomies-and my aunt has endometriosis-and stomach ulcers. but...my grandmother is 91 and still healthy..so..who knows. oh--an my dad had colon cancer 5 years ago at 65-and my mom has menieres (diagnosed a year ago and she is taking diuretics and other stuff..which help for now..) (and my grandfather had...(colitis?) not sure...but-he never took longterm meds and seemed to get through it-he lived til he was 92 without another attack-or whatever--but the genetic end of all of it does make me want to learn more--but..i guess since even the dr's dont know the cause of autoimmunes stuff..and why a particular area is attacked..i guess there is no way to know right now..(also-i know environmental-living conditions/food/stress--play a role in trigger--but..wonder how much they play a role in cause--altho-i guess from what i can tell so far -cause is probably multiple in reasons-so..i don't know. sometimes i try to understand and read all i can-and even though i do learn..it is really such a jungle of stuff with no one answer... i am an artist though-and often wonder how careful i need to be with media i use (nothing too horrible-but i do use paints/broken glass/wire/glues/sand and cut woods....i guess i'll just be more aware/careful (can't stop working...) but-just be careful -at least til i am off entocort -or does it matter? yuck--i am thinking too much-or thinking in circles-right now. 
sometimes the nerve near my left eye (where i had the shingles attack) acts up--never as bad as when i had shingles--but-at times of stress it does act up.
heartburn is still active--but-better. keeping a food-journal-as certain foods aggravate it--but..food is not the sole reason for it -as it never really goes away. i will be asking my dr more about this on the 21st.
otherwise-that's it.
just-hoping to get a bit active again. been in doing work via computer--but..need to get out more once again. but..i admit-if i am too active in a day (over past weeks)-i get a bit tired and don't feel great.--so-i guess i am going slow about getting back into stuff..
i am lucky to have close family and a few excellent friends. i just hate bugging them. they are there...but..i'll admit it--i sometimes just want to ignore this whole thing. though..it got to where it wont let me...so...oh well...
anyway-i hope all is going well on your end-your/others (this forum) sharing all you go through really seems to help others--and also good to just vent. i know it helps me...and i hope if there is ever any way i can help out somehow-well..that would be cool---it helps get through this sharing it..and learning too-(and i am sure even the dr's need to know a lot of the things people go through-so they can work it all in to learning more about not just crohn's-but ibd-and mostly-autoimmune based stuff...(and how to separate stuff too..) i don't know..
rambling..(sorry so long..just one of those days..)
~andrea


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## Jeff D.

Hey Skinsfan I guess I am unlucky and have C.

I got addicted not to a pain med but to benadryl because I could not sleep at night until I took it and a half hour later I would be out.  I know where you come from and I could not imagine how hard it would be.

Best of luck

Hugs


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## Cara Fusinato

I'm pretty much addicted to one med myself.  I take requip for restless leg.  In most cases, I can get away with not taking it, due to improvements by the mangosteen juice, but requip makes you go to sleep and stay there, in pretty decent REM sleep.  I like that because I never have slept well.  So, I have cut the requip in 1/2, and it really does ensure my legs aren't bouncing around the country, but I think I am addicted to the sleep aid in it.  Oh well.  We all have some flaws, right?


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## Skinsfan1229

REM???Isnt that Rapid Eye Movement time? So thats when your actually not gettting your best sleep isnt it?


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## Skinsfan1229

*Pain medication use in crohn's disease.../addiction*

http://www.addict-help.com/pain-killer-addiction.htm


*Pain Killer Addiction*
Pain Killers, also known as opioids, are commonly prescribed because of their pain relieving properties. Many studies have shown that properly managed medical use of pain killer compounds is safe and rarely causes addiction. Taken exactly as prescribed, opioids can be used to manage pain effectively.

Among the compounds that fall within this class—sometimes referred to as narcotics—are morphine, codeine, and related medications. Morphine is often used before or after surgery to alleviate severe pain. Codeine is used for milder pain. Opioids act by attaching to specific proteins called opioids receptors, which are found in the brain, spinal cord, and gastrointestinal tract. When these compounds attach to certain opioids receptors in the brain and spinal cord, they can effectively change the way a person experiences pain. In addition, opioids medications can affect regions of the brain that mediate what we perceive as pleasure, resulting in the initial euphoria that many opioids produce.

Chronic use of pain killers can result in tolerance to the medications so that higher doses must be taken to obtain the same initial effects. Long-term use also can lead to physical addiction—the body adapts to the presence of the substance and withdrawal symptoms occur if use is reduced abruptly. Individuals taking prescribed pain killer medications should not only be given these medications under appropriate medical supervision, but also should be medically supervised when stopping use in order to reduce or avoid withdrawal symptoms. Symptoms of withdrawal can include restlessness, muscle and bone pain, insomnia, diarrhea, vomiting, cold flashes with goose bumps (“cold turkey”), and involuntary leg movements.
Individuals who become addicted to pain killers can be treated. Options for effectively treating pain killer addiction to prescription opioids are drawn from research on treating heroin addiction.

Prolonged use of these drugs eventually changes the brain in fundamental and long-lasting ways, explaining why people cannot just quit on their own, and why treatment is essential. In effect, drugs of abuse take over the brain's normal pleasure and motivational systems, moving drug use to the highest priority in the individual's motivational hierarchy, thereby overriding all other motivations and drives. These brain changes, then, are responsible for the compulsion to seek and use drugs that we have come to define as addiction. This is likely the state people are in when they are reportedly "doctor shopping," feigning illnesses, and stealing from pharmacies to obtain the drug.

Fortunately, we have a number of effective options to treat pain killer addiction to prescription opioids and to help manage the sometime severe withdrawal syndrome that accompanies sudden cessation of drug use. These options are drawn from experience and clinical research regarding the treatment of heroin addiction. They include medications, such as methadone and LAAM (levo-alpha-acetyl-methadol), and behavioral counseling approaches.

Typically, the patient is medically detoxified before any treatment approach is begun. Although detoxification in itself is not a treatment for pain killer addiction, it can help relieve withdrawal symptoms while the patient adjusts to being drug free. Once the patient completes detoxification, the treatment provider must then work with the patient to determine which course of treatment would best suit the needs of the patient.


*There are alot of resources on this site, pretty good site, even if your not addicted to anything or havent been its some good knowledge to have on there.*


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## GNC Crohn's Man

Remember there is a big difference between the different types of dependencey:

"Chronic use of pain killers can result in tolerance to the medications so that higher doses must be taken to obtain the same initial effects. Long-term use also can lead to physical addiction—the body adapts to the presence of the substance and withdrawal symptoms occur if use is reduced abruptly. Individuals taking prescribed pain killer medications should not only be given these medications under appropriate medical supervision, but also should be medically supervised when stopping use in order to reduce or avoid withdrawal symptoms. Symptoms of withdrawal can include restlessness, muscle and bone pain, insomnia, diarrhea, vomiting, cold flashes with goose bumps (“cold turkey”), and involuntary leg movements.

Individuals who become addicted to pain killers can be treated. Options for effectively treating pain killer addiction to prescription opioids are drawn from research on treating heroin addiction."

This is not the same as mental dependency... Mental dependency may develope because of the physcial dependencey... If you are mental dependent and not physcially depependet anymore then you probably should go see a pain managment doctor AND a physctrist (not physcologist)... They may be able to help with the mental addicton part or point you in the right direction as far as the next step.... Plus they will be a lot more discrete than you just going to a rehab program...


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## GNC Crohn's Man

This is a good little article sticky please since we have tons of questions about pain meds and addictions...


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## GNC Crohn's Man

*Pain medication use in crohn's disease.../addiction*

We need a sticky post on what pain medication's are effective and what are not for use in treating our symptoms... 

First off any NSAID (Non Sterodial AntiInflammitory Drug) is very bad for you and may cause a flare up with prolonged use so stay away from them... That is all the over the counter medcine except for Tylenol (Actemenophin)... 

Remember as far as I know anything that has a large dosage of narcotics in it WILL SLOW DOWN THE GI TRACT... Also the actually pills may have trouble digesting and may by themselves cause blockage when they slow down your intestinal movements... 

I have found Darvocet (mixture of Tylenol and propoxyphene) is the only safe pain medication I can take that won't hurt my intestines.... Granted it does nothing for intestinal pain, but hey its good for all these headaches that the prednisone causes and it also helps some with the various joint and muscle pain... Propoxyphene is a narcotic that they made up in the lab but their is such a low dosage of the narcotic part that it doesn't effect the intestines generally... Granted it doesn't really help with the pain either.... 

If you are in GI pain you need to take a look at what you are eating when you are eating it, your bowel movements, your meds, what causes relief, what causes pain, right all that stuff down with a date and a time stamp... 

Best way to deal with the pain of crohn's is to avoid things that cause you pain...


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## Skinsfan1229

I see a Pain Management Doctor. He was an ER doctor  then became a Anestesiologist  he's just moved to my area and took over a practice so right now he's only doing pain management, but boy I cant wait till he starts doing anastesia at my hospital, because I'll have no problems with ER doctors withholding from me.

Here is a link to his bio, pretty impressive if you have a minute or two to read over it. 

http://www.jamesriverpainmanagement.com/grass.htm


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## Skinsfan1229

For me Percocet and Vicodin work the best, the 10/325's, they do slow down my digestion, but for me its perfect, having my ostomy and all, it makes my stools a lot better, and closer to how they should be. 

When I'm in pain from rectal pain and my oral medications arent working I'll get dalaudid through IV 2mg every 25 minutes. (1mg of dalaudid is equal to 10mg of morphine). 

If I'm having surgery or admitted to the hospital they will give me 10mg dalaudid through PCA pump, 6 bowliss, 4 over the hour, 40mg of CR oxycontin ever 12 hours and 35mg of regular oxycontin every 4 hours. 

Watch out for the narcotics though, especially if your one of the ones that get constipated instead of diahrea. Also they can cover up the real problem. With me, its not eating, or bms, none of that coincides, but its different for everyone, just like each pain medication will work different. 

Just like for me Morphine does nothing, so I've gotten into the habit of just sayying I'm allergic to it so they dont try to force it on me before giving me the dalaudid. Demeral, even the 100mg pills, I was prescribed to take 2 at a time, and 100mg are the biggest ones, and all it did was give me a head change, no intestinal relief, or pain relief, so i flushed those. 

Honestly the best overall I've had for moderate pain are the 10/325 vicodin, they slow down my digestion more then the percocet and dont give me a head change so I can still drive and such, plus if I'm nasueas then it helps with that also, extremely helps actually. I also take it on  an empty stomach, I've built such a tolerance that if I take it on a full stomach they wont do anything at all. I always take more then 1 at a time. PM Dr. knows, I do let him know, and he says we'll end up needing to use something longer acting...like methadone, I dont know how I feel about that, but at the same rate its better then 200 to 300 pills a month if i can take 1 every 12 hours or so. 

I think I'm one of the few with crohns that have a lot of pain, some  people dont have pain at all, so remember this is my experience, Everyones WILL be different. I've seen people on here say they get demeral through IV, but that doesnt work for me, so theres an another example. 

Pain mangement doctors are definetly the way to go if you have access, and plan on being on pain medication for a pro-longed period of time, say 4 months or more I would really say. A PM doctor either has to be an anastesiologist or neurologist, either way your in better hands then a GI or PCP prescribing. I used to get my surgeon to do it and he did it great, including weaning me off instead of stopping it cold turkey and such. Anyone with chronic pain from crohns should speak with their pcp or GI about pain managment, but I would talk to my PCP first...GI's seem to stray away from pain medication.


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## Skinsfan1229

I'm going to merge the posts about addiction I put up the other day that we responded to so we dont have two of the same threads, or close to it. Plus I'll sticky this, good idea.


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## GNC Crohn's Man

Wahhhhoooo good job skins


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## Skinsfan1229

lol thanks Crohns man.


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## HeidiZoo

*Hey XRAYZERASE*

I can definitely understand all your pain and worry of addiction.  I have been dealing with endometriosis pain for 11 years.  The best thing I EVER did for that, was go on the Depo Prevera injection!  I strongly advise discussing this with your OB.  I also have quite intense abdominal pain due to the Crohn's, severe acid reflux, and to having a pancreatic tumor removed.  The tube feedings I had for four months after my tumor was removed caused nerve damage in my lower abdomen... and because I'm missing most of my digestive system, there are very few pain medications that my stomach can handle.  I've honestly never taken anything for my Crohn's pain... I just deal.  But if you can't deal with it, there's no reason you should suffer.  Talk to your doctor and figure out what's best for you, and don't be so worried about trying a narcotic if necessary.  Six weeks ago, I fell off my horse and now I have a concussion, bulging discs in my next, damaged discs going down to the middle of my back, and nerve damage, pain, and decreased use of my left arm.  I've been on vicodin for six weeks and it has not effected my Crohn's one bit!!!  I HAD to be on vicodin for four months straight after my abdominal surgery and I stopped it immediately after my stomach tubes were pulled with no withdrawals/side effects.  You will find what works best for you.  I like to remind people too, don't ever be afraid to get a second opinion... or third   It took me a very long time before I could find competent doctors.  Good luck!

Take care,
Heidi


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## Skinsfan1229

People have to realize that surgery may not 'fix' your pain. 

You may have nerve damage in your colon or bowel, in which case, removing something may not take the pain away....you'll still have the damaged nerves.


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## ccarp001

for exactly that reason i refuse to take narcotic painkillers. i take Ultram, and while it doesnt totally wipe the pain out if its really severe, it allows me to function. i dislike that doctors go straight to narcotics, when there's such a risk of addiction/dependence issues. i mean, we already have enough problems as it is! lol


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## Budgirl

I also am under the care of a pain specialist.  And Morphine does NOTHING for me either.  It actually increases my pain (like through the roof).  In the hospital I am always given Diluatin and it *WAS *a god sent. But now the problem I have faced the past two times in the hospital is the Diluatin doesn't work anymore.  I have become so tolerant to  narcotics that they can't give me anymore than they do. I have taken 4-8 Vicodin a day along with a 10mg of oxycotin CR(2x a day) for over 2 years now.  This is due to more then just flare up pain.  I also have a bone disease(caused by high doses for prolonged periods of time of Predisone).


I recently had a knee replacement and was so scared of the pain afterward not being relieved by meds.  I had the best pain guy ever.  He said it happens all the time to long-time users of pain meds.  He gave me an epidural for 2 days following the surgery.  After that though I had to deal w/it on just oral meds.  I have now realized that my pain meds help me on a daily basis, but when the pain gets out of control there is nothing they can give to me to really put me out of my misery anymore.


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## xrayzerase

*pain specialist..?*



			
				Budgirl said:
			
		

> I also am under the care of a pain specialist.  And Morphine does NOTHING for me either.
> 
> hi budgirl
> i was just wondering:
> what or how did you go about getting a "pain specialist"?
> i didn't even think of that.
> i am not in a place where i am intolerant to many pain meds yet-but i have been through drug addiction-yet-at the same time-i do at times need pain meds.
> to have a dr that can work with me on this may be a thought..as taking ANY narcotic or whatever makes me nervous due to my history.
> i have been taking 3-4 7.5 vicodin a day for -oh-about a month now--but hopefully the remicade working-things may ease up and i won't need the pain meds soon. i just simply couldn't function without them.
> i have not had it nearly as hard as you-but i do have other illness (endometriosis) which also causes some pain and osteoarthritis in my foot from a bad break.
> i try my best to stay away from pain meds-but-this time-it wasn't even the pain that got me-but the exhaustion caused by the stress the pain put on my body. once i took the pain med-i felt the obvious slight-sleepiness from the pill-but it took away much of the total =exhaustion of not being able to feel cofortable in any way-can't sit stand lie down with out feeling horrible-and so i finally got on my dr about the pain meds (even he was hesitant at first due to my past)
> all i know is that i'd rather get addicted and go through withdrawl again than deal with months of this pain/exhaustion til the remicade kicks in enough so i can get back to work etc.
> i just though-hmm-a pain specialist--especially if i need pain meds in the future for longer periods. this time i think i'll be fine-i should bge tapering of the vicodin soon. but i admit once i taper the steroids-even thoughon remicade now-i still worry about a bad flare again. so need to keep this in mind.-now-or later.
> all i know is that since i found out the remicade is working (for now)-i am in a good mood. that and my prozac has me out of depression. i am working a lot more-and can finally get back to not just working from home in about 2 weeks (after my next infusion)
> anyway-just curious--did you get the specialist through your GI? or on your own?
> i know it is different for wherever anyone may live-and so on---but-still-and info is better than none.
> thanks
> and good luck
> you sound like a real fighter-(i read your intro thing) and that is GOOD.
> i know for me-i am too-despite the thing that i have trouble with depression as well as all this junk. but -is by FAR not who i am. i am an artist. not a crohnie.
> but sometimes-i guess it takes a bit to remember this...
> ok-enough=
> andrea


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## Budgirl

I was referred to a pain specialist by my Orthopedic Doc.  I have a bone disease called AVN "dead bone disease" caused by prolonged use of predisone.  Before this occured I was never given pain meds for my Crohns(except for after surgery pain).  I was hospitalized for a Kidney stone about 3 years ago.  That is when I was first prescribed Vicodin for a long period of time.  I noticed that once I began taking this drug on a daily basis my bm's decreased drastically.  I wasn't in the bathroom after every little thing I ate.  I know that it is because Vicodin slows down the bowels but I didn't care because it was giving me relief.  Now, after 3 yrs of being on it I'm sure I'm addicted to some extent.  It really is the worst when I'm in severe pain and nothing seems to work anymore.  I don't recommend taking it on a daily basis to anyone.  Mainly because my tolerance is now so high that even when I am hospitalized for a flare up IV pain meds really don't even help anymore.

A pain specialist really is the way to go though.  He keeps up on my intake and trys to keep me as comfortable as possible.  They monitor your usage and also take bloodwork to watch for side effects of long term usage like Liver damage.


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## xrayzerase

skinsfan and gnccrohnsman:
i have now been takin vicodin for about 3 months. first 3 either 5 or 7.5 a day then when i went off entocort i took between 4-10 a day. 
it helped-enormously-as it allowed me to function even just a little. 
also: th ermeicade is not working for me. had 3 infusions. went of entocort and had a blood test a week later-infammation is back--not high--but : back. it didn't surprise me as i am still very crampy and burning-and have fever-and still have bad fatigue.
whatever. i see him next week-may have to have all tests (inc colonoscopy) and new tests alol over again. he wants to put me on 6mp. stop the remicade. not sure what else. it is very confusing.
i am going to talk w him about pain management at slaon kettering. maybe he's be open to working with them.
i hear you gnc on the slowing of bowels w narcotics--but i highly doubt this other med will do it. i'll try it -i'll try anything. but right now-i am trying to taper off vicodin. but-in reality-will be asking for more and to wok w pain counseling. 
valium -or-for me-ativan-and librax-don't help with the bad cramps and the exhaustion that comes with it all.
vicodin-for me-so far has been the only one to help--but i do admit-my dose is increasin-i do need to more as i go along. 
any advice?
are narcotics really not worht the risk if they allow you to "function"?
just curious


----------



## xrayzerase

*thank you*



			
				Budgirl said:
			
		

> I was referred to a pain specialist by my Orthopedic Doc.  I have a bone disease called AVN "dead bone disease" caused by prolonged use of predisone.  Before this occured I was never given pain meds for my Crohns(except for after surgery pain).  I was hospitalized for a Kidney stone about 3 years ago.  That is when I was first prescribed Vicodin for a long period of time.  I noticed that once I began taking this drug on a daily basis my bm's decreased drastically.  I wasn't in the bathroom after every little thing I ate.  I know that it is because Vicodin slows down the bowels but I didn't care because it was giving me relief.  Now, after 3 yrs of being on it I'm sure I'm addicted to some extent.  It really is the worst when I'm in severe pain and nothing seems to work anymore.  I don't recommend taking it on a daily basis to anyone.  Mainly because my tolerance is now so high that even when I am hospitalized for a flare up IV pain meds really don't even help anymore.
> 
> A pain specialist really is the way to go though.  He keeps up on my intake and trys to keep me as comfortable as possible.  They monitor your usage and also take bloodwork to watch for side effects of long term usage like Liver damage.


budgirl
thank you
i am lookin into sloan kettering for pain management.
i don't have joint troubles-well-slight over past month-but nothing that bothers me. i have been doing my best to try all things before going to prednisone. 
i also have endometriosis/ibs-severe-and my dr suspects i may have other immune-related things going on-so-hene the tests ahead.
cant wat for the ole scope again!!! 
but-thanks...
good luck to you
i know how pain can take so much away from your life--just even simply shopping makes still makes me feel sick/fever so on. but-w vicodin-i am able to at least go out a bit--i am not housebound--and while yeah-i am not 20--i am 43--i still am young in mant ways-and my work just happened to be taking off just when all this hit --dx 6 months ago. my depression is less the cd/pain-but living alone-(tho i have good spport-family/friends)-but not working-when things were at such a high--THAT is what killed me most. and it was i may have to acccet-i may have to adapt to a different sort of work--but when you LOVE your work-and may never be able to go back to it in the same way..it takes enormous will to hange.
the pain:
i HATE IT-
but it is not working that is killing me-and also-i have responsibilities to others-which in a way is good-as it keeps me from goin into my head on this and giving up (easy to do at times)but-i not only love people-and my cat --they also rely on me --and so..i am glad for that.
i just find the way fr's respondm to pain meds a bit stupid. yeah: the viocdin slows the bowel and so on-but it also allows one to live a bit. i mean-think of what predisone is/does...same thing? ok-not really-but-it's damage is far worse. what is the answer? none. you look for what you are qilling to accept as a risk --if something works-it should be up to you. not the dr. or at least-have the dr monitor you if on pain meds.
just like when u are on pred or rem or others.
anyway-thats all


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## BTRoadie

*Ultram, Tramadol, Vicodin, Percoset*

Having read over all the posts, I am not really delighted but relieved to know there are others out there with chronic pain from this affliction

I went through three GI's before I found one I was comfortable with and he is pretty stingy with the pain meds until recently.

I see an arthritis dr as well and he started me on the tramadol/ultram about 6 months ago and it works great sometimes but makes it difficult for me to sleep, so he gave me lorazapam that no longer works with out increasing the dosage to dangerous levels.

I currently am on a taper of prednisone from 40 to 0mgs takes about 8 weeks
along with imuran, asacol, two iron pills daily,a course of flagyl as well, they tried remicade on me but my reaction was severe, so that has stopped and I am now going in for the scope again upper and lower on the same day! good times

after the scoping he is talking about Humira, may have misspelled that one.

Medicinal marijuana is approved for Crohn's in washington state but my doc isn't quite that liberal. I find that it helps with appetite, cramping and joint pain(no pun intended) when I can find it

I will be looking for a pain managment specialist after reading this thread, thanks for all your help

if anyone knows a good one near seattle I would appreciate it!

Paul


----------



## Matthew

Hi all

During a recent ER visit they gave me morphine for the first time in my life, about 30 seconds or so after the injection and flush of warmth my pain - lower gut cramps - went from maybe a 5-6 to completely off the scale. I pretty much fell off the gurney and into the floor in a knot. Scared me, my wife and  the nurse silly, but in another 30 seconds or so, it seemed like 5 minutes, when the worst of the waves passed I got her to lead me to the bathroom cause I felt nauseous, within a few more minutes the pain and nausea were all gone and I mean all gone. I stayed on morphine for the next 24 hours or so, several more injections with no more bad reactions just what I would call a warm quiet relaxed meltout which is what I understand to be normal. I know some people are allergic to morphine but other than the initial incident I seemed all right with it. Anyone else had a similar result? Should I expect it again? Doctors and nurses were not too forth coming on the issue if they knew anything.

Matthew


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## Matthew

Hi all
Att: GNC Crohn's Man

You are dead on so much of this stuff that I have fought out so far, thanks for your info on the stuff I haven't.

I have found Darvocet to be very effective as well , especially for the persistent dull lower back pain that I get from time to time with flareups. Yea it is not as effective for the sharp pains in my lower gut, but it does tend to take the edge off about as good or a little better than pot, and since pot is illegal where I live and job is one of high accountability, well you get the picture...

I have had some trouble with constipation with Darvocet as it does tend to slow things down for me. Anymore I take a Metamucill caplet or two per Darvocet, this seems to help as long as I take them with plenty of fluid. I NEVER take Metamucill caplets without at least 12oz water per caplet as I am convinced they have caused a blockage for me without enough water.

Dang there is so much variation in how these illnesses manifest themselves in combinations, in each individual case no wonder there is so much disparate and conflicting information out there.

From what I know about my condition they have not found any restrictions, strictures or fissues so far (via scope and enhanced CT), thank goodness. I do have diviticular lesions in various places the acsending and transverse as well as the descending colon, some very near the illeum. The worst flareups for me have started with infection of these close diverticuli and end up with my illeum shuting down, small intestines thus blocked and the entire colon lining inflamed and hyper-inflated. So I have to be very careful about food contamination, constipation or GI tract slowdowns in general.

Again thanks for all your contributions folks.

Matthew


----------



## Evagation

I've tried to read all of the posts, and you all make many good points, so I'm just going to share my story.

After the arthritis diagnosis at 12, my docs gave me tylenol-3. Years later, when I wanted off the codeine (and the acetaminophen), I moved onto tramadol (Ultram). Once the pain started getting much worse, it was on to Vicodin. Then it was onto Percocet AND Vicodin. My tolerance had gotten insanely high. Then the Percocet was switched out for Darvon, and I still had the Vicodin.

I got addicted. It took me the past few years but there is no question that I was extremely addicted to opioids (opiates are drugs that are actually derived from the opium plant, opioids are synthetic opiates). 

Also--has anyone mentioned that opiate use can lead to major migraines? It's true. I developed intense migraines while I was on Vicodin, and I simply treated them with more Vicodin, and then Percocet. I had to take a frightening amount of drugs just to get the migraines to go away. It's probably one of the reasons I got so addicted--I had to take enough opioids to not just get rid of the pain from arthritis, but to get me so high that I could barely feel the migraines.

I figured out I was addicted when I started a pain journal, and included in it how many times a day I took pain killers. Within a few weeks, it was obvious that I was just popping opioids because I liked popping opioids,  not because I was in that much pain. If I hadn't gone to my docs with the pain journal, they probably would have kept giving me pain killers and not thinking twice about it. No one who's ever met me, especially my docs because I'm super-responsible about my CD, would ever think that I had gotten addicted to drugs. Even my own husband didn't realize how bad it had gotten until I had him read the pain journal. My family, my boss, my co-workers, my friends, NOBODY knew how many drugs I was taken on a daily basis.

So, yes, it is possible to get addicted to the pain killers. They are habit forming, especially opioids (including codeine). I've been reading up a lot about addiction, and they're learning so much about our brains on drugs. We all have  opiate receptors in our brain, and our body does actually produce a small amount of opiates on a daily basis. Except the drugs, even codeine, flood our brains (opiate receptors) with far more opioids than it could ever naturally produce.

Which is why, at first, they work so well. Docs are learning that we build a tolerance to opiates because, after prolonged use of them, we actually trick our brains into thinking that we the need all of those extra opioids just to survive. So, instead of working as a pain killer, they simply keep the addict from going through a painful detox. It's why opiate addicts have one of the highest relapse rates of all drug addicts. We're not just physically addicted to the drug--we have our brains convinced that we NEED the drugs. So, for me, instead of taking them only when I was in pain, I took them all of the time because my body had gotten so used to them. If I tried to be good, and not take any for a few days, just to prove I could, the withdrawal symptoms would be so bad that I'd go back on the Vicodin just to make the withdrawals go away. For me, it became a vicious cycle.

(If anyone is curious about the new methods of addiction treatment, check out the HBO site for it's documentary, "ADDICTION" It's incredibly informative. They've done brain scan studies of addicts that show that an addicts brain reacts to drug cues (triggers) so quickly that the addict doesn't consciously realize it's happening. All they know is that their brain is suddenly telling them that the drugs are the most important thing in their lives--more important than a spouse, children, families, and a job--and that they need to get the drug NOW. It's all really interesting. Well, to me, at least.)

Now, just to be clear. I am simply sharing my story. I come from a family with a history of addiction (my maternal grandparents were alcoholics, my Mom was addicted to prescription meds and my Dad is addicted to gambling). That history definitely had a lot to do with pushing me further into my own addiction. I'm not trying to advocate that anyone should just abstain from pain killers because you might get addicted. I just think that it's a good idea to know your family history regarding addiction, to make sure your docs know about it, and to keep a pain journal.

I still keep my pain journal, even though now all it says (for the past month) is "I hate withdrawals! Withdrawals suck!" But I still write in it because I know that, someday, I'm going to need to go back on pain killers. Unlike the average addict, I actually have a chronic illness that will, eventually, necessitate some amount of pain relief. We just won't ever take me back to the opioids. 

People get addicted to all sorts of things. Oprah talks all the time about her addiction to food, but that doesn't mean she stopped eating entirely because of it. I have friends who are definitely addicted to shopping. It's how we handle the addiction that matters. Which was why I needed my pain journal to finally make me admit that I was an addict. I could hide my drug use from my husband, but I couldn't hide it from myself. 

Yikes. This is long. I apologize for that. When I saw this thread I couldn't help but think, WOW. I'm only a month clean from my opioid addiction, so this thread called out to me because the more I talk about my addiction, and how I'm dealing with it, the better I feel. The withdrawals are still awful but talking about it helps remind me why I'm going through it all in the first place.

Thanks for letting me share.

Katie.

(Edited to Add: Oh yeah. I still smoke pot. I'm in California, and I have a prescription, so my docs are all just fine with it. I'm going to Narcotics Anonymous meetings, and I have a therapist that I see on a regular basis. They all agree that as long as I don't get psychologically addicted to pot--which probably won't happen since I don't smoke on a regular basis, only as a last resort when I'm either in a whole lot of pain, or haven't eaten anything for a few days--then it's not a problem. Luckily, every single study has shown that there is no way a person can become physically addicted to pot. Just mentally dependent upon it. Which is why I have my pain journal, and my therapist. Dealing with the opioid addiction is bad enough, so I'm doing everything I can to not develop another addiction.)


----------



## xrayzerase

hi-not on as much-but still keep up here.
i just wanted to say it is good that people are really talking about this issue in "depth"-and giving links to sites that may help.
i now am taking up to 15 vicodin a day-i worry less about addiction than with the amount of tylenol that is in the vicodin.
i know i will have to face "detox" at some point. i've been there before though-and yes-codeine is equally as addictive as the others-i was taking up to -well-alot-of t-3's-seems like nothing-but when you take over 20 a day-it is a lot. especially the tylenol-i was lucky my liver didn't get toxicc-or whatever.
anyway-i am in for a colonoscopy (2nd one in 6 months) to see where the crohn's "is at"
the remicade unfortunately gave me lupus like-syptoms -and arthritis --but-it may go away once it is out of my body. i do know arthritis is part of crohn's though-so hard to tell.
regardless-i also upped my ativan. my gyn and psychiatrist work together now-which make me feel better. they all agreed the ativan and pentasa definitely work. i just now need to find a med i can take to get into remission-he will likely put me on entocrot again for 4 months -as well as 6mp-and up the dose as i go along. hopefully it will work.
anyway-i am talking to all of my dr's re different pain meds-the effect they have on the colon-etc-but-sometimes--what is the worst of all the evils?
without pain meds-well-for me-i can not function. it is that simple. until i am in at least "better" remission-whether meds or sugery-who knows-but-til theni will take the pain meds. whether they aggrevate or not. it is a matter of living a life. this could be a year or more til i get the right med/s.
i finally am also working with my psych re adjusting my meds for depression. so far-some help. less down.
it is good reading the various posts on pain meds. yeah-for me-that was -is-a big issue. i don't want (like all of us) to spend my life on this computer. i want to live. and if pain meds help me live-even if the aggrevate my colon-"ef" it-you know? i am looking into meds less aggrevating as well as for meds that have less tylenol. obviously i can';t take 4 vicodin at one dose every morning. it will mess my liver up. obvious stuff.
i apologize to ruthymg and TNT-you guys have great advice-i never nmeant to cause downers--i was just severely depressed-as well as having crohns'-i have had a probelm with depression (chemical) since 11. been in psych hospitals as a teen-so yeah-i do know i have depression.
but i do respect both of you-and i apologize for my abrupt behaviour-
at any rate
glad to see all this on pain meds-i wish the dr's would learn more rather than fear them-or the other side-give too much. there is too much fear (with dr's) on this issue-and we-the sick-suffer due to this. and it is messed up.
enough is enough on "addiction"-
detox is inevitable-but many ways to dealwith that (safely)-now. i'd rather take a good pain med-get addicted-but it is less "bad" for my colon--rather then take meds that hurt the crohns more. there are pain meds out there--but-get over yourselves dr's-addiction is not always the worst of the vils when it comes to disease.


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## Jvstin

I haven't posted here in over a year, if I even posted then, but I really want to reply to this.
I've had 2 doctors tell me to smoke marijuana. I was very unsure about it at first, but since pain kills the appetite, I finally broke down and did it, and by far, it's the only pain reliever I've used that hasn't aspired to become addictive. I've been given the morphine/phenergren combo pills, hydrocodone, etc. and they all have the potential of becoming addictive. it may not be the same for everyone, but in my case, marijuana works quiet well. if you aren't a fan of smoking (no crohns' patient should) try using it in tea, that works slower but just as well.
I hope no one is offended by this since it is currently an illegal drug, but ask your doctor(s) about it and get their opinion.


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## Kev

My knowledge of medicinal marijuana is 2nd hand.  I havent' needed it, as my own pain levels have moderated...  In Canada, it is prescribed and legal for any number of situations where pain relief, nausea control, or appetite increase is seen as a pressing concern, and other traditional methods just won't do trick. I heard that it's also legal under similar circumstances in the US, but rarely used as getting a legit prescription is apparently extremely difficult. (just a rumour). I would certainly consider it if my pain levels were out of control.  As for smoking, I've had 3 physicians who've very reluctantly admitted that it helps in the control of bleeding in various forms of colitis, up to and including crohns colitis.. but that it is definitely contra indicated in the treatment of crohn's disease. I'm not an advocate of smoking, tho I do smoke.  The long term negative 'side effects' of tobacco can't be denied, its a treatment that will invariably cause you other problems, even killing you. but, the benefits of it (most likely the nicotine) cant' be denied either. If in a bad situation where you are consistently losing blood, and ground due to that, it's possible your doc might consider a nicotine patch or similar as a 'short term' solution.  Bear in mind, we're talking blood loss due to colitis, not CD. Why it works for one, but hinders the latter, I dunno. Apparently, neither do Dr's.. 
Myself and my doc's want me off of tobacco ASAP, but the 1st step for me is to get my disease stabilized...  then work on a remission, then wean me off of nicotine w/o causing a relapse or flare.  Our plan is to use patches over a 10 week plus period, and keep our fingers crossed...  Now, a lot of doctors will vehemently deny tobacco as a treatment for anything, considering all of the bad effects, and it's highly addictive nature.  As for marijuana not being that addictive, I dunno.  My personal experience is that I toked as a young fella, and had no problem putting it aside, whereas others in my peer group still do it, despite recreational use/possession being a criminal offense. Who knows...
I guess my concern with the latter is that, if coming from an illegal source is the quality..  has it been salted with other drugs, pesticides, herbicides, or if sourced illegally, what happens if one is busted buying it or possessing it. do you want to spend a nite in the lockup while suffering a crohns type flare up? Some folks travel thru life as is blessed, bad things never happen to them. As for us crohnies, shit just seems to follow us no matter how good we behave!


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## spipe

*Where is my Pain Killer*

You mean they give you people pain killers?  I have never been given any pain killers except when it is a 9 in pain and go to the hospital.  I usually have to take a stool softener, a gas reliever, steroids, and make myself vomit to relieve the pain to a level of sanity.  If you get a chance check out my other posts I have figured out it is all about the speed of your bowls.  I have tried every medication out there every treatment and have dropped them all I am med free.  I found if a doctor doesnt know I do know my body better then they do and messed around and found my cure took me years but I have a full life besides an every now and then mistake of eating steak lol.


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## Jvstin

I praticly live on pain killers. I used to have regular prescriptions of Lortabs and the morphine/phenergren mix capsules.
now I don't have a G.I. that's so "friendly" with giving them out, so I live in pain most of the time, but it's became part of my life.
but whenever I have a flare and hit the E.R. I get a small prescription, which means I get more done around the house that week.
I suppose it all depends on where most of your inflamation is, mine is so low, so everytime I bend I hurt.


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## Samantha22

*pain*

Hi I posted this some where else, but I am having severe leg pain. I just got diagnosised have been on prednisolone for about 3 weeks and I woke up today with the worst leg pain in life. It isn't muscle but bone. Has anyone else had problems with arthritis? I have had a high ANA test and some other arthritis before I was diagnosised with crohns they said it was fibromylaga (not sure if that is correct spelling). I am scared to go off prednisolone I don't want to get another flare up. That was horrible, I am nurse and I was the pt it was horrible. I couldn't stop vomiting and having diarrhea at the same time. I just remember the dr. saying you don't realize how serious this is. I just feel lost. Thanks


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## D Bergy

I will go out on a limb here and propose a hypothesis that could easily be wrong but could point to a possible cause.

Steriods are like poison to someone with Lyme disease, which could very easily be the same as Fibromyalgia.  You are suppressing the immune system when it needs it the most, to fight bacteria.  This allows rapid activation and multiplication of the Lyme spirochete.

I know people with both diseases and the symptoms are so similar that I have a hard time believing they are different diseases.  

Even if it is something else it is most likely bacterial in nature.  Some if not most forms of Arthritis is likely caused by bacteria or micobacteria. If it is Lyme disease and you take any kind of antibiotic your symptoms will present themselves as a bad case of the flu because of the Herxheimer reaction.

Joint pain is the most common of symptoms along with many others.  Long sunlight exposure can make it much worse.  Also is often is worse in the spring and fall.

This may be way off base, but I do know that Lyme disease is nearing an epidemic if it is not already one, and should be considered.  You will hear more about this in the future, but currently most people and even doctors are blissfully ignorant about it.

Dan Bergman


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## Kev

Good hypothesis.  Samm, do you live in an area where Lyme disease has been reported? Ever been bitten by a tick?  Go walking in tall grass wearing loose legged pants or shorts?  Do you have any pets that frequent the outdoors? Have you checked your body for an odd shaped bite mark, that has spread?


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## Samantha22

*pain*

No I don't ever go outside in tall grass. I also don't think that I live in an area where there would be ticks. I was just wondering if anyone had this kind of side effect from the medication. I am suppose to go to the Dr. in the am and see what she says. Thanks for replying


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## melodia

Hi --

I'm going to try to start methotrexate to get things under control, it's not the abdominal pain that is so much the issue, eliminating eggs, gluten and animal fat from my diet has virtually stopped the cramping (except during defecation) it's my FEET.

Is there anything anyone here generally does for their feet? I mean, I usually have my bowel movements (several) in the early AM, but when this happens my feet flare up like nobodies business and I can't sleep. As a result, I'm becoming quite sleep deprived. I tried an NSAID and all it did was plug me up and then the pain in my feet was twice as bad two days later.

Tylenol and stuff do bad things to me as well, I was curious if there was an anti-inflammatory I could take that _wasn't_ an NSAID that would do the job.

Thanks!


----------



## MikeB101

*Codiene and Crohns Disease*

Hi all, My wife has had Chrons for the last 6 years. She has become addicted to Codeine. Is codeine a must have for people with chrons?? She has become severley depressed that she is addicted to Codeine. Anyone have an idea of what she can do? Should she try to get off them completely?


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## D Bergy

If you are in severe pain then I suppose some type of pain killer is in order.  I really do not know what the alternatives are.  It would be good to see the doctor and explain the situation.  Maybe there is a less addictive alternative.  I do not think Codeine is routinely used in the U.S. for Crohn's.  

Sorry I could not help more.

Dan Bergman


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## Tdogzjoint

Sorry, but I have to say Ive been taking hydrocodone 10/325 for almost 4 years now, 3-4 tabs a day, with incredible results. First I'd like to say that it is true that people with REAL pain have only a small chance of addiction because they are actually taking it as perscribed.

 I had difficulty sleeping due to cramps and the midnight trips to the john, but not at all while taking my pain meds. But even more importantly, the diahrrea control is unmatched with any other drug, before I was going 10 times a day or more; not to mention when I have to go, I HAVE to go!( I had 1/2 a colectomy at age 17) I could not imagine having to go to work or tackling my day otherwise.

When I take the med as perscribed, I only have to go 1-2 times a day, and when I do, It is not painful( normally it's like sitting on a hot poker ) And the stool has a shape instead of being like an oil slick. I'm not sure about this, but I think that the slower bowel movements are also beneficial because more nutrients are metabolized instead of just shooting through you; that just seems to make sense.

 I just don't see why everyone has such a problem with this, for me it makes me feel normal, I get a LOT more things done around the house, I don't have to live in fear of not having a toilet around at all times, which to me is priceless. Opiates ARE a suggested form of treatment for severe crohn's sufferers, especially in my case where I'm on the toilet for 25% of the day. I have been fighting with my new GI, who suggested Immodium AD, I just laughed at him, he wants to perform surgery on me, which is only a temporary fix anyway( the likelyhood of crohn's returning to the bowels is 45-65%) 

I do understand that a lot of people abuse these medications, but is because they are taking them for the wrong reasons, I feel opiate analgesics are grossly overlooked when treating mild to severe crohn's. And in my case NOTHING even comes close to the relief they provide me.

Okay, got it off my chest


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## Catmandu30

*better late than never*

Hi there, ran into your post while researching crohn's issues. I am currently taking a new non-narcotic pain med called Tramadol. hope this might help!


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## Kev

Safe usage of a prescribed pain med to deal with a constant, never ending pain shouldn't been seen as a problem by anyone.  The question originally was pain meds AND addiction.  addiction to anything inevitably poses big problems.
Equating the two is unfair...  and defending an addition is a symptom of that addiction


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## Tdogzjoint

Catmandu30 said:
			
		

> Hi there, ran into your post while researching crohn's issues. I am currently taking a new non-narcotic pain med called Tramadol. hope this might help!


I have heard of this, but does it do anything for the diahrreah?


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## Tdogzjoint

You are right on Kev, yes defending ones right to pain meds can be a tell-tale sign of addiction, I guess I mentioned it because my doctor said he was worried about me being addicted, which of course I thought was funny in my situation...


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## Kev

Well, I don't think a doctor raising the question equates to an acusation (sp?) of being 'addicted', or even coming close.  Just that a professional MUST raise the point from time to time...  to forewarn a patient there is all too real a risk.

Like, even with 'real' pain issues, with a painkiller as the ONLY solution, there are known cases where addiction follows...  It might take years for an alternative to come along, or for the pain to subside...  Doesnt' negate that the 'addiction' has become a reality, and needs to be dealt with too.


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## TammySue62

Catmandu30 said:
			
		

> Hi there, ran into your post while researching crohn's issues. I am currently taking a new non-narcotic pain med called Tramadol. hope this might help!


I was on this drug until my pain Dr. said that they were removing it from the shelf. Did not work fast enough for me. I will stick with my dilaudid


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## Colt

I use darvocet. I ration it out though. A bottle of 60 pills lasted me over 2 years. I've had my current bottle of 20 since this time last year. Unless you take it repeatedly within a 3 day period it's impossible to develop a physical addiction anyway. Especially with darvocet which is by far the least addictive and side-effect prone. (it's also not as strong as codeine but it's enough to bring anything down within a typical crohn's patient's high pain threshold)

It's not that I'm not in excruciating pain that the pills last me so long, but because I restrain myself until I can't wait any longer. I don't have the option of just not taking pain medication. My pain is often so bad I worry about going into shock. I've certainly passed out from pain before.

The slowing effect of taking one darvocet isn't even bad most of the time. Slowing your intestines will reduce the terrible spasming that's tearing your intestines apart and give it a moment to rest and recuperate. The slowing of the intestines can be counter-acted easily with a laxative anyway. I've never encountered a worsening of my symptoms after taking a narcotic. Only improvements. In fact, my pains usually go away for the rest of the day after taking darvocet.

If quick bowels were the answer we'd all be on stimulant laxatives. The opposite is true in most cases. The objective is to slow the intestines to rest them from the constant damage they are doing with overly violent peristalsis and to prevent ripping open a blockage and instead of stimulating the intestines using things like stool softeners to make it easier to move through. In fact, my doctor encouraged me to take my narcotics more often because of that very reason.

As for joint pain which can get rather disabling for me sometimes I use cyclobenzaprine, but again in moderation. The key is to treat pain medication as a PRN as prescribed and not a daily med. As long as you're not really overdoing it any pain medication can be good for you.


----------



## nochie

I think having too much painkiller harmful for our health. It can damage our cedney.


----------



## BWS1982

nochie said:
			
		

> I think having too much painkiller harmful for our health. It can damage our cedney.


You can damage your "cedneys" all you want, they are afterall, intangible, fictional organs. About as real as your use of articles and syntax. :tongue:


----------



## Guest

BWS1982 said:
			
		

> You can damage your "cedneys" all you want, they are afterall, intangible, fictional organs. About as real as your use of articles and syntax. :tongue:


gee, thanks Benson, i was just going to google where my cedneys were, & then check mine looked ok. you saved me from a lot of contortioning


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## Kev

Hey, spelling, grammar, syntax (doesn't that sound like something the gov't would do if they could)..  if we start nit-picking those, I'll have to stop posting altogether....  Afterall, some folks post on here in their 2nd language.


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## Isla

Kev said:
			
		

> Hey, spelling, grammar, syntax (doesn't that sound like something the gov't would do if they could)..  if we start nit-picking those, I'll have to stop posting altogether....  Afterall, some folks post on here in their 2nd language.


Well said my dear!


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## BWS1982

I meant no offense, which is why I posted the ":smile: " following it. Just teasing. I'll bet if I went to some European forum and tried to converse in another language I'd butcher it to hell. I'm aware of the cultural diversity, as I've seen much evidence of it over the years on the net. No harm meant, I apologize if any came of it.


----------



## GregD

I've been prescribed tramadol and percocet in the past. Neither really did anything for my Crohns related pain. However, after my resection surgery, the percocet really helped with my surgery related pain. I was on them for about 6 weeks after my operation. Going off them certainly wasn't easy. I wouldn't say I had a full blown addiction, but I was definitely starting to become dependent on them. If I had been on them for much longer, I could have seen it becoming a problem.

-Greg


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## albertjames

*Pain Medicine Addiction*

Addiction is a psychological phenomenon where a patient takes more medicine than they actually need. And then they become obsessed with taking more medicine, and obtaining more medicine, even when they're having serious side effects and maybe making them ill. We know from treating chronic pain in adults and in children that addiction is rare in adults, and it's extremely rare in children.


----------



## Op.28/18

GNC Crohn's Man said:
			
		

> Remember their are two types of addiciton... First is the mental addiction... You crave the medcine because it makes you feel good and better... Then their is the physcial addiction that your body craves the susbstance in order to help keep your body better sedated and in a healthier state...
> 
> Remember if you are having intestinal pain then thier is only so much you can do...
> You can not take NSAID's they will cause your crohn's to flare...
> 
> http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202743.html
> If you have active inflamation in your bowels then you CAN NOT have narcotic based pain meds...
> 
> Anything that is narctoic based will cause intestinal slowing and blockage and will only make the problem worse... You may feel pain free, or at a lower amount of pain for a few hours, but be in even worse pain 4 hours later... Thus you take another pain pill to killl the pain that the pervious pain pill caused you as it passed through your body... Very fast way to get addicited, hospitilized, or even dead if you do this... Yes your intestines can rupture.... If you have lots of pressure (if you feel super bloated all throughout your intestines and stomach) then do not take a narcotic based pain med. Very much so if you are then going to take a phengran and try to eat (you may be starving due to a high prednsione dsages). If you do this then your intestines can rupture... If your instestines rupture then well you will either die or be live with a very very very not pretty pitcure of what is left of your intestines..


Good info...when I was diagnosed, and still flaring, I was put on a narcotic and the results were not good.


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## Pharr

GNC Crohn's Man said:
			
		

> ...Also remember if you ever feel your in pain, or alone or something else then call a friend and get them over there to take care of you... You should never have to fight this battle alone.... If you do then you will have nothing to look forward to but pain... Life is about looking to improve and enrich your life and the lives of the others around you... It is not about you suffering every day simpley so the next day you go and suffer more...
> 
> So talk to your friends, set goals, make plans, even if you know you can't do them. Life is about living it. Always look for that silver lining no matter how dark things get... You will get better eventually and you will be stable... Otherwise you will continue to degrad and your body will fall apart. Then you will die and be at peace... Either option is what I hope for...


Wow i really needed to hear that....believe a "thank you, Crohn's Man!" is in order....i have been suffering every day...need to add that to my list of fixes!

:depressed:


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## JGBeatCrohnsDisease

*Vicodin/hydrocodone*

Some people that i've worked with have had problems getting attached to vidodin or hydrocodone...it seemed that this is what really did the trick for those bad stomach pains and they would just take them to the point where it was every day...the tempation to use ANY pain medication is high but there are always others solutions...i've had a lot of success going people with meditations and exercise and a healing diet...

it helps some people enormously... 

Josh Golder


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## NatalieMT

Unfortunately I know all too well about taking painkillers. I'm struggling to find relief from my symptoms and painkillers are the only thing can help control what I'm feeling. I'd rather not take them but at the moment I feel I have no other choice. I've never at any point felt addicted though, I don't feel like I need them to function. If I'm lying in bed all day it's not necessary but in order for me to get on with my day I'd like to be as pain free as possible. When I'm not having a bad week I don't take anything at all. I feel it's important to only dose up as necessary.

I started off on co-codamol when my symptoms started and surprisingly it helped calm my pain for quite a while. It was pretty effective. When my problems increased I went onto dihydrocodeine. Again very effective but only for a short periods of time and I found after a couple of hours the pain would be back full force.

I've tried tramadol too more recently, which I believe targets the pain in a different way. It was possibly the best out of all of them, but again it wasn't particularly long lasting for me. I could take maximum 400mg a day extended release but come 6pm I'd be in agony and not able to have another dose. Which led to terrible sleep. 

I'm now on fentanyl patches, they are an absolute miracle. Since I started wearing them I've felt the best I possibly ever have. They give continuous 24 hour pain release and I'm just so happy to feel more normal. Although this isn't a painkiller I also take diazepam in low doses as a muscle relaxant, helps the stomach muscles and I can finally sleep. I woke up this morning and I think I possibly felt the happiest I have all year.


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## sabrina

*Hi - new to this site*

I've just joined this site and it looks great.


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## ChronsSUCKS

*Buprenorphine - Subutex, Suboxone*

My CD has flared up about a month and a half ago. The pain was pretty bad and i knew early on that my crohns was back, even before i did any tests.

I dont know if this is common or not, but i have NEVER been offered any powerful pain medicine for my CD. I have had crohns my whole life, got diagnosed when i was 13-14. My doctor has never offered me any effective pain managment. Chronic pain is a terrible way of life and im happy to see that other people get pills for it!

This time around i am medicating with *Buprenorphine (Subutex 8mg)* http://en.wikipedia.org/wiki/Buprenorphine.


> Buprenorphine is a thebaine derivative with powerful long-lasting analgesia approximately twenty-five to forty times as potent as morphine


This has worked like a miracle for me. Subutex is custom designed for crohns disease in my opinion. Its very effective against pain for me, it's long-lasting, potent, and is very hard to become addicted to. And it does not cause respretory depression, so it is nearly impossible to overdose on it.

Subutex is a unique opiate in the way that it doesn't make you sedated and stoned like for example vicodin or this type of strong narcotic. When you take it you get energetic, get an increase in apetite (for me personally), and the effects last up to 12-14 hours. This has been good for me because my crohns makes me very fatigued constantly. Subutex helps me get out of bed and take care of myself, and get out of the house and just be all around more active. Now i live a more normal life -- during my last flare i could do nothing except lay on the couch and watch tv. Not even read on a forum like now because my brain had no energy at all to even think.

This may be an alternative for you people who get constipation problems from opiates. While buprenorphine DOES slow down your intestines, it's very potent and long lasting. I can get through a whole days pain by dosing only once at around lunchtime. I dose again at night if the pain comes back (though it makes it difficult to get to sleep). And when i dose, 0.5-1 mg is enough to give me the full effects. I see it as truly a next-generation pain killer thats custom made for us with chronic diseases.

I have used buprenorphine non stop for a month and a half (sometimes i stop using it for 24-36 hours to manage tolorance). I have adjusted my diet a little bit and i eat more foods wich help me get to the bathroom, like prunes or soup every day.

With all the positive opiate-relief and energy boost this gives me every day i have never had any major constipation problems yet! So anybody who has problems with their opiate based pills or whatever you take, look into Subutex. It might give you good help in difficult times like it does for me.

Good luck everybody!


----------



## Lucas80

Hi!
Walking is treatment? 
_"One study found that participants who started walking three times a week experienced an improvement in their symptoms, and a general improvement in quality of life, compared to a control group of people with Crohn’s disease who did not change their usual routine."_
http://crohn.blog.hu/2009/02/14/treatment#more943681


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## mRae85

New to this group but I finally made it to the thread I have been scared to read. Pain is my main symptom but untill now I didn't relize how many Crohnies are on pain meds, this is scary for me. I have been trying to tell myself that they will get me on the right med and I will go into remission, now instead of remission or a switch of meds, they hand me pain pills... Im not a Dr but common sense tells a person that if they are in bad pain then something is not right with the main med and so on... Drs learn by reading books, but i seriously think the ... well Crohnie in this case is smarter just by plain experience!


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## Menking914

My doctors have never been afraid to drug the living hell out of me. Most of the time I suck up the pain but if I need it I always have vicodin or oxycotin on hand. The reason being is that I know the difference between just normal pain and go to the emergency room pain, even if I am on pain medication. The best thing to do is either go to a pain doctor (they exist) or tell your doctor that you can manage your crohn's and you won't mask your symptoms, that you will simply make life liveable again


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## hleeann

I have been seeing a pain management specialist for two years and it was actually my referral to her that got me started in the right direction toward getting a diagnosis for crohn's.  My GP had written off all of my symptoms as IBS and told me to take Immodium.  Thank goodness I found the pain rehab specialist.

I have taken small doses of Lortab 10/500 for several years now and even though I don't really want to take pain meds forever, I've been reassured by my doc that doing so in monitored situations is fine.  I take a fairly low dose--between 2 and 3 tablets a day depending on the pain level, and it has made a world of difference in my functioning and ability to keep up with the goings on in my life.  Of course, I'm taking it in combination with several other meds for the crohn's but the Lortab is a critical piece of the medicine puzzle for me.

Initially, the pain medicine was really intended to treat chronic neck/back pain--residual from multiple disk problems and surgery several years ago.  However, I found that it also helped treat multiple other problems at the same time and I could cut down on other meds--the acetominiphen in Lortab helps keep the fever under control, the narcotic in it keeps my restless leg syndrome under control (severe problem), the narcotic helps with the joint pain, the medicine is constipating so it slows down the diahrrea, and the narcotic treats my stomach pain in addition to the neck/back pain (which actually is under control now, so I'm primarily taking this med for crohn's and RLS).  

I can function on the Lortab whereas Percocet or other meds we've tried knock me out.  

My doctor is a pain rehab medicine doctor called a "physiatrist" which I initially thought was a combination between a doctor and a psychiatrist (also an MD, I know--this seemed to be a pretty good combo to me)   Come to find out, physiatry is a sub-specialty of medicine and she deals specifically with chronic pain patients and rehabilitation.  It's a carefully controlled situation with the pain meds.  If I get a prescription and it doesn't work out, I take the remainder in and they count it and flush it.  If you aren't taking pain meds for actual pain, they will know it and release you from being a patient there.  I like that it is very controlled, that we have frank discussions about the pain medicine, that I check in once a month and they take a "pain inventory," etc.   I think that doctors are wise to be hesitant to give out pain meds--unless a person really needs it and then some of them can just be ridiculous.  That's why I think a specialist is a good idea.

I can't imagine where I would be right now if she hadn't A. been willing to treat the pain with the correct medicine and B. noticed the probablility of auto-immune disease in me and sent me on the right path to the gastro doc.

I can't imagine having a crohn's diagnosis and not having a pain/rehab specialist on my treatment team.  I think it has made a world of difference for me.

I think it's wise to look for a physiatrist if you have these kinds of symptoms.  You don't necessarily have to go on pain meds, but he or she will be able to at least monitor the pain situation. I wish you the best with it!


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## SpoonNinja

so ive had problems sleeping and my friend gave me some of her ambion(sp?) to help me sleep and i take one every night...can you get addicted to that? other then that i dont take pain meds unless i REALLY need them because i dun like how they make me feel...so i dun thiink i needa worry about that but i really hate it when none of my drs will give me pain meds when im really hurting and cant afford to go into the hospital because they are narcotics and i will get addicted you would think they would no by now that i only want MAYBE 10 for a month if im in a lot of pain...idk theyre stupid! im sorry for the rant lol but it made me think of it and it really annoys me!


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## kello82

spoon--i was on ambien for a bit cause i have sleep probs too (clearly, as its 1 am lol) and it was kind of scary stuff, so just be careful with it ok?
i had some amnesiac (sp?) things happen--would wake up in the bathroom and not know how i got there, would post things here and not remember doing so, etc. it also made me wayyyy uncoordinated and the event that made me stop taking it was randomly falling in the middle of the night into the stand up shower!
lol its funny now, but people hit their heads and get seriously hurt in bathroom accidents!
more severe can occur too, like sleep driving.

not trying to scare you, just be careful! if it makes you weird, then stop taking it and find something else

i was always anti pain med too. never took them in 10 years with this, no matter how bad it was.
until this past year when it got so bad that i literally could not stand up or get out of bed without them and would throw up every meal.
im afraid of addiction now too. been on them since mid march. not for the same reason though now its pain due to surgery complications


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## SpoonNinja

yea thats happend to me once i had taken an ambion at like 7 and me and my mom decided to watch a movie around 8ish and i dun even remember saying to watch it and i cannt remember it at all! its terrible lol but my mom says i say random stuff too like one time i said i had to go to bed for the  pancakes lmao!! i wish i could go to bed and get pancakes^.^


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## kello82

lol thats funny! yes it does make you pretty loopy and confused.

i think confusing bed with pancakes is ok lmao, but any worse symptoms be careful ok!

on the pain med front--ive just switched today from 10 mg percocet to 4 mg dilauded. the past few days i havent had any relief from the percs....no change in pain at ALL. they used to make me feel great---pain gone and would make me relaxed and able to eat cause i was more comfortable.
for me, any type of pain= no appetite. i think ive even stopped gaining weight cause of it
now its just nothing.
so instaed of upping the dose, the doc switched me.

anyone whos used pain meds long term before:
am i heading down a dangerous path here?

i mean, i dont really see another choice, without pain releif i wouldnt make it through the day atm.
but.....im still worried.


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## SpoonNinja

i have a lot of pain sometimes but i cant get relief at all because none of my drs will give me any type of pain meds so i dont eat or do anything till my mom forces me to the er because my drs wont do anything. and believe me i hate taking pain meds i dont like how they make me feel. but sometimes i need them and noone will do anything for me. so when this is happening how should i go about geting my drs to give me a little bit of pain meds they wont give narcotics which would be ok if what they gave me helped but it doesnt. what should i tell or ask them?


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## kello82

i honestly dont know how to ask. i feel like any time i do theyre just sitting there thinking "ok shes 19, shes gonna get high and sell them to her friends...."
since surg though my doc has kind of just been getting them for me without too much grief, we will have a discussiona bout my pain level, and he knows what i need,

maybe when it gets bad just call and tell him how bad it is? they can do things like give you just a few day supply. it helps a lot if you can put a number on your pain level. i HATE that question, cause its so subjective and one minute you can be in pain and then the next be ok, normal crohns pains were waves of it for me. but a number gives them something to judge besides "its really bad". and my dr knows be by now, that i never never ever say its a 10, so the couple times i have, he can compare it to all the other times.

um, does that make sense or even help at all? i just woke up, so im pretty fuzzy, im sorry.
just talk to him is my main advice i guess. but im not too qualified to give this advice as i havent had this experience at all until now, im still learning too.


----------



## SpoonNinja

yea i get what your saying but my dr now refuses to give any type of pain meds and wrote a letter to my primary that he didnt want me to have pain meds because of my crohns so i think ima get into a diff one when i get my new insurance thing. i hate the number thing too because mine comes in waves to and it can be horrible one min and tolerable the next. its frustrating because if its not hurting bad the moment they ask my # and i say what it is when it does hurt they give me  a look like im just trying to getpain meds so idk i do no that there is 4 days of school left so im doing all my exams right now plus i have my lovely monthly friend soooooo as soon as school is out my mom is making me go into the hospital. its annoying...


----------



## kello82

well im glad youve only got 4 days left, but sucks that you have to run to the hospy right away.
forgot to mention, for a while my gi didnt want to give me the pain meds casue he said it would "mask the symptoms". its like, duh thats the point, its supposed to. but i guess he wanted to find out what was going on before just taking meds all the time that wouldnt make it easy tot track if i was getting worse or not.
that was before i decided to go for the surgery. once we knew the state of everything and what we were gona do, it made no sense to have me wait out the weeks in pain when we already knew where i was heading.
aw keep us updated on if you go to the hospy and what they decide to do


----------



## SpoonNinja

can do ^.^


----------



## Wizbit

kello82 said:
			
		

> i honestly dont know how to ask. i feel like any time i do theyre just sitting there thinking "ok shes 19, shes gonna get high and sell them to her friends...."
> 
> maybe when it gets bad just call and tell him how bad it is? they can do things like give you just a few day supply. it helps a lot if you can put a number on your pain level. i HATE that question, cause its so subjective and one minute you can be in pain and then the next be ok, normal crohns pains were waves of it for me. but a number gives them something to judge besides "its really bad". and my dr knows be by now, that i never never ever say its a 10, so the couple times i have, he can compare it to all the other times.


I know exactly how you feel... 

I have had constant pain of varying degrees and in various abdominal locations since last February... yet have had no pain medication prescribed apart from 800mg Asacol (mesalazine) 3 times a day. I was only given this when I was eventually diagnosed with Crohn's in April and they do not seem to have any effect at all.

When seeing my GP or specialist, I have tried not asking, asking subtly and asking openly, yet still haven't been able to get any effective pain-killers. Now I am at my wits' end and don't know what I can do because, even though I am supposed to be in remission, the pain is always there. It interferes with my work, my leisure time, my mealtimes - everything. I'm actually jealous of the other guys that have been given these meds to help with the pain! :yfrown:


----------



## ChronsSUCKS

I just get what i need illegally. Seeing as its my life controlling my pain is my buisness. Doctors are irrelevant when they dont help. While he decides how much of what i should take, imurel or pentasa and remicade, im here in crippling pain for the last year with no difference to my life.

Its so stressful to tell them you are in pain and they just tell you to "breathe". Like they dont even listen.

I get addicted now to opioids that are much stronger than what i would actually need for pain, because weak medicines like Tramadol arent available outside the hospitals. But at least it's my choice, and i can choose if i want to live in pain or with addiction.

At least addiction pains can go away with a little bit of money, while against your own body you dont stand a chance.


----------



## Wizbit

albertjames said:
			
		

> Addiction is a psychological phenomenon where a patient takes more medicine than they actually need. And then they become obsessed with taking more medicine, and obtaining more medicine, even when they're having serious side effects and maybe making them ill. We know from treating chronic pain in adults and in children that addiction is rare in adults, and it's extremely rare in children.


You just copied and pasted that from here: http://abcnews.go.com/Health/LivingWithPain/story?id=4052380

...and I would argue that it's a very, very poor description of addiction! :tongue:


----------



## Wizbit

ChronsSUCKS said:
			
		

> I just get what i need illegally. Seeing as its my life controlling my pain is my buisness. Doctors are irrelevant when they dont help. While he decides how much of what i should take, imurel or pentasa and remicade, im here in crippling pain for the last year with no difference to my life.
> 
> Its so stressful to tell them you are in pain and they just tell you to "breathe". Like they dont even listen.
> 
> I get addicted now to opioids that are much stronger than what i would actually need for pain, because weak medicines like Tramadol arent available outside the hospitals. But at least it's my choice, and i can choose if i want to live in pain or with addiction.
> 
> At least addiction pains can go away with a little bit of money, while against your own body you dont stand a chance.



I feel for you and completely understand your situation. I was given some 'left over' tramadol by someone who was caring for a relative who than passed away. It was very effective at easing my pain, but, being opioid-like, you can become physically addicted to it. I now know that you need to taper off after prolonged use. As you say though, addiction can be managed with other drugs, thus minimising any nasty withdrawals...


May I ask what drugs you obtain through illegal channels? 

It would also be interesting to hear other peoples' views on using drugs that our governments deem 'bad' for us. Speaking as a libertarian, I believe people should be allowed to do what ever they choose as long as it doesn't directly harm anyone else.


----------



## ChronsSUCKS

Im not saying this to recommend it. i would definately NOT recomend taking anything without your doctor knowing. Anyway i just take Buprenorphine basicly. Its used medical when you want to quit Heroin, but in sweden its sold illegally also (people abuse it and get addicted, and the withdrawal is longer and worse than Heroin).

When you use something for pain, you really have to use it for pain. Then you detox from it when you're feeling healthy.

I have had many withdrawals from it, and stopped using many times. Its something psychological, because of my personality im not scared of being addicted. Because i probably would never take it if i wasnt in pain. It feels as if i can always get addicted and then quit when my health is okay. 

Thats how i started my current flare up. I just thought to myself that "okey ill make a tradeoff, i'll be pain free but i will have to deal with the addiction later". But being sick lasted longer than i thought so ive had to quit a few times just to give my brain a rest for a couple of weeks.

For me being sick means i will be depressed. You go long times disconnected from your normal life, and get to the point where you feel like you have no control over anything. The poioids help for that aswell, but thats also the problem. Anybody can get addicted and continue for the rest of their life.

Because who IS in control of their life, really? Even if you're the most powerful person in the world you still feel out of control, right?


----------



## ChronsSUCKS

Remember the biggest problem with opiates! It replaces your ENDORPHINE, so your brain eventually stops making it. Thats what makes you addicted and feel like you do when you quit. After long recreational use the endorphine is gone forever and you have to use methadone or bupe for life. 

When that part of the brain stops working you can never feel happy about anything again. So you have to quit now and then and be in pain for a few weeks. Probably having the disease and at the same time having drug depression is 10x worse situation.


----------



## lesleymariep

GNC Crohn's Man said:
			
		

> Unless your in "real pain" they give you Toradol now... It is a strong NSAID and not addicitive... It is not safe for long term use though....



how much does a person have to suffer b4 they consider it "real pain" ? my 13 y/o daughter is in the hospital 2 weeks now and not getting any better and all shes getting is toradol and yes i read why they cant give narcotics during active flare up but is there ANYTHING else they or I can do to help my girl? shes literally screaming in pain  half the day.. it comes and goes.  the kid in the next bed has similar symptoms and hasnt even been diagnosed yet and is on oxy and morphine. I dont know how much longer either of us can take it. shes been on steroids for almost  2 weeks and its not helping and usually shes on pentasa, azathioprine, cortifoam and iron for the constant blood loss.


----------



## soupdragon69

Hi Lesleymarie,

Am so sorry your daughter is suffering as she is. I know it may seem that the kid in the next bed is receiving better pain relief with similar symptoms and she is suffering so much in comparison.

I have some thoughts on this so bear with me ok?

Firstly from your post I take it your daughter has either crohns or UC? As such she has a definative diagnosis and they need to figure out the cause of her pain as fast as possible.

My thoughts on this are if she has been on steroids for going on 2wks and its not helping despite what she is normally on then you both need to listened to and fast!

I hear your frustrations very much in your post and totally understand that you feel unable to take her pain away and have to continue to watch her.

Have they tried an antispasmodic drug - i.e is the pain being caused by severe spasm? 

Is she able to eat and drink? If so and it is severe spasm causing the pain to come and go with such intensity have you tried peppermint tea or getting her to sip warm peppermint oil (it is prescribable and it is not the usual peppermint oil you buy)

Can you be more specific about the area she is having the pain in? From what you are saying that she uses cortifoam I am assuming she has her IBD in her large bowel? Are they doing anything about the ongoing blood loss and is it much?

I am a nurse Lesleymarie so some of my questions may seem odd honey but bear with me as I am just bouncing ideas out here and pondering out loud ok?

Half the problem with pain also is that you tense up and tensing up makes the pain worse. Have they offered her some relaxation sessions? So that when the pain hits she has a way of helping to manage her pain by either working through it with her breathing or you talking her through it so she is less distressed and panicky? I know very well you will be comforting her when she is in pain lesleymarie but talk to her and tell her that things are going to change and for the better - what I am getting at here is that we often say "it will pass soon", "things will get better". Rather than doing that say to her "I am working with the doctors and nurses to ensure the pain is eased and that we get you better" and do this at a time when she has no or minimal pain so she clearly understands. Also tell her you know she will have pain episodes but you will be there to help her cope until things "kick in". Show her in this manner what you are doing. By using more positive language she will feel things will come under control sooner and it will help her to cope believe me. Does that make sense?? When you are so stressed it transmits to your child - you know this lesleymarie you dont need me to tell you eh? If she sees you are more sure of how things are going to work out she will relax more. This isnt meant to sound preachy by any means please understand that! I am trying to give you ideas on how to lay groundwork and a foundation to move forwards on..

Have you tried heat on the area like a hot water bottle so the pain is worked on constantly and not just when it hits so that the muscles are more relaxed?

Are they keeping a note of how long the pain lasts, where it is and scoring its intensity i.e on a scale of 1-10 for instance? So that they can see any trends.

Have they discussed any other treatment options with you?

How long has she been in hospital and how long has she been in this state?

You know your daughter lesleymarie keep on speaking up on her behalf. Keep at them each time about how she has been and your concerns and keep pushing them if you dont think they are doing enough. Dont bring up the kid next door because they wont take on board comparisons and are just interested in looking at her.

Point out to them that there must be better management of her pain, that its unfair for her to continue like this etc etc and ask if there is a pain management team that specialises in children that could perhaps help her to cope in the meantime. 


Hope my ramblings help (have just come in from a busy day at work) and that your daughter gets some relief soon and that you also become less distressed as a result.

Am sure that the others here will come up with some thoughts too.

Thinking of you both ((hugs))


----------



## Wizbit

lesleymariep said:
			
		

> how much does a person have to suffer b4 they consider it "real pain" ? my 13 y/o daughter is in the hospital 2 weeks now and not getting any better and all shes getting is toradol and yes i read why they cant give narcotics during active flare up but is there ANYTHING else they or I can do to help my girl?


Sorry to hear all that. it must be very distressing to see your daughter have to endure that... it's bad enough when you're 33 let alone 13 

I am astounded they have prescribed Toradol as it's an NSAID... and I am told NEVER to use them by my nurse, specialists and doctors. The best I get use is co-codamol which is codeine and paracetamol (I don't think you can even get any codeine-based pain killers in the US without a prescription)

From wiki: NSAIDs are never to be used in individuals with Inflammatory Bowel Disease (e.g., Crohn's Disease or Ulcerative Colitis) due to their tendency to cause gastric bleeding and form ulceration in the gastric lining. Pain relievers such as paracetamol or drugs containing codeine (which slows down bowel activity) are safer medications for pain relief in IBD.


As I said above, I have found Tramadol very effective for pain relief but the withdrawals, even after a month or two of low daily doses, can be horrible.


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## Wizbit

I am very surprised though that there has been no use or even testing (that I can find online) of Ketamine to specifically treat Crohn's pain. Besides being a strong anaesthetic / analgesic, it is non-addictive, easily administered, has a massive dosage range, does not interfere with GI function plus it has the added benefit of having some anti-depressant properties.

The drug is a perfect candidate for managing the pain from Crohn's IMO and something like this would be ideal: http://www.medicalnewstoday.com/articles/118181.php

http://www.javelinpharmaceuticals.com/pmi150.html


----------



## lesleymariep

Hello soupdragon.. thanks for taking the time to reply.  My daughter has had symptoms since she was 10 and was diagnosed with crohn's colitis almost 2 years ago. they havent tried antispasmodic drugs. they did all sorts of testing at first as she was not keeping food down and was severely dehydrated, her heart rate was high and she was pale and lost about 15-20 lbs in a month. she got back from a trip up north on july 28th and i took her to the emerg. as soon as i saw her and we never went back home.. they transfered her out of town to the childrens hospital where she sees her specialist normally. her  doc just happened to have left this hospital recently and her replacement hasnt started yet so its been like 10 different residents seeing her.. i know they all answer to the same doc but still frustrating not having consistancy. they have her on a low residue diet and are trying a lactose free diet for the last 2 days to see if that helps although her appetite comes and goes. they are keeping track of the pain and intake/output. most of the time her pain is in the lower left area of her abdomen and its alot worse when shes (trying) to poop. alot of the time she goes to the bathroom just goopy lookin blood comes out and just since yesterday shes been going to the bathroom like twice a day and her pee is getting very concentrated.. like today she went 12 hours b4 the nurse insisted she try and go and it was about 600ml of almost brownish urine. I have been reading to her and playing word games to keep her mind occupied when shes in pain and shes such a tough little girl.. she understands her condition and shes very mature about it.. i explain everything to her about her condition and i dont sugar coat things too much as i want her to know whats happening inside her body but of course i dont say anything to freak her out.. i am so calm around her and even apart from her actually so she gets no stress from me i can assure you. i am very good at coping with stress and am a very reasonable, understanding person so i am trying to see where the docs are coming from too and understand their reason for treating her as they are.  sometimes a heat pack helps and sometimes it makes it worse.  she had a fever tonight 38.5 i believe. theyre also starting a suppository tomorrow although i forget the name (starts with an f)  

thanks so much 



wizbit- i was also surprised when i read the possible side effects.


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## soupdragon69

Hi Lesleymarie,

I can understand your frustration at the number of docs and no consistency. As I was saying you are doing a great job and I totally understand why you feel as you do. When children have chronic illness they are often wise beyond their years arent they.. On the lactose free aspect my understanding is initially its 4-7 days that you may initially find a difference but could take up to 4wks to see anything major. It could also be that she is so exhausted and so inflammed that she may not be able to notice any difference until things are in better shape.

Ok so they are trying a low residue diet... I dont know where in the world you are based. Here in the UK we have drinks like modulen and Elemental 028 Extra. They allow the gut to completely rest whilst being absorbed higher up the first metre of the small bowel.

As she is under 16/18 they may have another liquid diet that is more suitable. I know in the US it seems harder to obtain/or get them to use it however there is research that shows that up to 80% remission is achieved with this option and then a low residue diet can be introduced along with searching out any foods that may upset/do damage. Have a look at the LOFFLEX diet (google it for some ideas as it was designed by the team of GI's at the hospital where I am based). 

This route is something I tried and it worked very well. Some others here have tried it also with reasonable results.

My reason for suggesting this is it may then allow the steroids time to kick in with more effect. It is a tough first 5-7 days on something like the liquid diet I mentioned BUT worth the effort. It is introduced gradually over the first few days and with her appetite coming and going and the fear of going to the loo may be the answer as she then wont have to go or things should be greatly diminished. Should also help ease her pain AND solve any concerns she may have on the food/ go to the loo link and any fear she has built up with eating. It also means she gets the nutrition she desperately needs and it will help with lethargy and exhaustion she is experiencing and any sort of mental foggyness as she absorbs her body individually needs.

You need a paedeatric dietitian that specialises in IBD that is worth their salt on this one so if you havent got one push them to get one and if you already do ask them why the heck this hasnt been suggested!!

The research is there for both the elemental and modulen. The elemental that I used comes in both powder format that you make up with water and ready made cartons. The dietitian should be able to supply samples of which we all prefer certain flavours. I believe the modulen you can add milkshake flavouring to. So kick it around with them!

The website for the elemental to give you some reading material is: www.shs-nutrition.com

Are they replacing her fluids intravenously? Even just to give her a boost rather than leaving her on just the fluids she drinks? It is possible to put a "venflon" or cannula into her arm using an anaesthetic cream so she wouldnt feel any pain. Here it is called Emla cream.

Hope this helps a bit more and gives you some ammo!

Stay in touch. We will all help here were we can. ((hugs)) to you both.


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## lesleymariep

hi.. dont have much time as im falling asleep but yes she is on IV fluid. last couple days she hasnt eaten anything really except maybe a couple crackers. they talked to me all about remicade today.. i have the weekend to weigh the risks and benefits and talk it over with my daughter.. risks are so scary      im in canada btw.


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## ChronsSUCKS

Any results with Prednisone? Prednisone works instantly and your daughter should feel alot healthier after taking it. Remember that she will recover eventually.


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## lesleymariep

my daughter was on prednisone for 8 weeks and got all the bad side effects but did nothing to help her crohns. they also have had her on steroids here for 3 weeks and only got worse.. she had her first dose of remicade today..


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## TheyCallMeRC

I was going to a pain management clinic but all they did is get me addicted to Lortab.

Last time I was in the hospital, they had me on IV dilaudid (FTW) and IV morphine.

When I was getting close to coming home, they put me on the Duragesic patch 50mcg. I did not even need/want the dilaudid anymore.. No opiate cravings and it takes the pain away.

I talked to my GI and he currently has me on it since it works.

I still need something for breakthrough pain in the morning and in the evening and I am working on finding something effective for that.

If you haven't tried the patch yet, you might want to give it a shot. Best part is that it lasts for 3 days, so don't have to pop pills all day long.


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## Peggy

I take co codomol most days to control crohns pain, lately as the pain has been so bad, they have given me oramorph at a low dose they say I can take 5-10 mils every 4 hours, I try to keep this as ow as2.5 mils about three times a day when needed. This works for me. Peggy


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## bjeffrey

I read all your posts.

I am going drug free with an ocassional 15mg of codiene and a few tabs of Lomotil.  

If you have the urge to go to the bathroom after you eat, perhaps, it is the food you just ate? What you put in is what comes out if not processed.

i hope this helps.
jeffrey


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## Robert kipnis

yes. Norcos.  Everytime I hava a hospital stay I become an addit. Dilauded in the hospital norcos and vicodins after.


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## CrohnsHobo

I am currently taking hydrocodone 5-500 but they don't do a whole lot. If I take them on a regular schedule they provide some relief, but still after I eat or go to the bathroom it is rough. I have just maned up and dealt with it for 15 years, but now I need some quality of life and need some pain meds. 

After my current prescription I might head to a pain management specialist.


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## Robert kipnis

I'm addicted to norco.


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## kello82

anyone who has constant pain and is on the verge of addiction/addicted,  i definitly reccomend seeing a specialist and getting some type of pain patch. i was taking 12-14 percs a day to manage my pain w/o enough relief, now i have 25 mcg fentanyl patch and im down to 2 percs a day.
the patch is awesome and covered my pain so that i could get down off the perc before i was in deep water. i take one here and there when i have pain thruought the day and overall dont suffer too much.
i cant imagine if i was without it, im sure id be up to 30+ percocet each day right now, and not only physically addicted but mentally.
as far as i know the patch isnt addictive cause its constant, no extreme low and then craving for the high and releif.
not sure if you have to wean off the patch though.....not sure how that works. huh.
is anyone else on patches too?


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## beth

Yup, I got a patch for my back and joint pains. Brilliant thing despite it not taking away the pains completely which is probably a good thing so I don't over do it and do my back a severe mischief. I don't think it's slowing my gut too much - I've only had it 4 days so it's only just up to full blood level. 

It's just 5mcg/h BuTrans - buprenorphine.


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## NatalieMT

I'm on the Fentanyl patch 12mcg and I also have the Fentanyl losenges which are 100mcg I think. I was on Fentanyl prior to this occasion but went through a period of not needing painkillers, then ended up on MST. With the MST it just got to the point where it was becoming less effective, the dose was being increased and it just wasn't a great situation to be in. For me Fentanyl has given me the most relief, without many side effects - the only one I've noticed is that I now bruise very easily.

I believe Fentanyl is still addictive but as it is more effective in keeping pain control constant as Kello said, in my opinion that means less room for abuse by those who has been prescribed it atleast.

You do have to wean off the Fentanyl patch - it comes in 12mcg, 25mcg, 50mcg, 75mcg and 100mcg so wherever you were at dose wise you just work your way down.


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## kskitt

my mum has crohns (diagnosed and operated 32 years ago), and was given codiene phosphate for the first few weeks and was told that if she couldnt do without in those first weeks then she would never come off it, and 32 years later she is still on it, although the dose has been slightly lowered (self prescribed)


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## wqcoleman

I take 2 endocet every 8-10 hours for the horrid spasms and pain.. I'm trying to space them out and get off of them... To have to take these meds is as bad to me as having to take Humira.  They offer nothing but a temp relief from the pain - but nothing more.  I can't wait until I have no reason to take these meds.. however, I also realize it's rather inhumane to be in agony with no relief, I'm not into being superman.


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## SuperSabre

Hi..I'm 65 years old, still working and trying to stay active.  Had Crohn's since 12 years of age. 
Two bowel resections.  Surgeon tells me no further surgery possible.  I guess I'm close to "short gut syndrome"  On Humira and Pentasa, but still much gut pain and diarrhea.  I can hardly eat anything without pain starting about two hours after eating.
Been suffering pain for many years.  Finally my GI doc relented and gave me Vicodin-5.  Now seeing my GP for pain control.  Taking Vicodin-10 3 x day for pain which is barely holding it.
At my age I don't know how long this is going to go on.  
Is it bad to be taking narcotics long term at my age?  I still have to work and function in lift.


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## Crohn's 35

Hi there Supersabre welcome to the forum!!, have you tried Remicade??? I think it is a stronger drug than Humira, I was on Humira for weekly shots and peter'd out.  I have had two resections, about 2ft gone but going to find out if it is possible for a 3rd surgery as all meds have been exhausted.  

As for being on pain meds, not good long term, liver problems, constipate which can hurt more and of course addiction.  I know it is hard but we all want relief and at 65 you must be worn out from it.  I have had crohns symptoms for 30 years.  Sometimes you dont know what to do.  From what I was told it is supposed to be a young persons disease....well so far that aint so true for me. I wish you healing hugs and you find relief with a maintainence drug to help you get through.  When do you have a Gi appt?

Take care!


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## SuperSabre

Thank you Jettalady... 
I took Remicade for almost five years with great success, but it stopped working a little over a year ago.
We tried 6MP several years ago, but got a god awful case of pneumonia and had to discontinue it.
Yeah, I'm kind of worn out dealing with CD for so long.  I just want to keep some kind of decent quality of life because I do have a life to live.  So I figure if I have to take pain meds to stay somewhat free of pain, I should take them.
On the addiction issue I'm conflicted.  Do I suffer as I did for so many years, or use pain meds and possibly become addicted?  I have that Puritanical guilt thing about the pain meds which constantly bothers me, but on the other hand I don't especially want to be in almost constant pain for the rest of my days.
What's right?


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## Crohn's 35

I am with you!  It isnt good to be on them but perhaps there is another alternative.  A good idea so everyone else on the forum can see you are a newbie, go on MY Story thread and post your story, that way everyone can welcome you and give some advice from their point of view.  This is  a very friendly forum, maybe they just dont see your posting on a older thread.  Tell us your full story on your own Post! Glad you found us.


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## timmie29

my daughter is heading to the childrens hospital for her scope tests this month but they changed her meds to a lower dose med pentasa (not doing anything for her) she is now weined off of the entocort which she was getting headaches from but the pentasa does not seem to be doing anything for her she also has severe joint pain that tylenol does not work for she is only 15 i don't want to go to harsh on meds we have been getting a homopathic pain killer that i don't think is doing too much but we are looking at adding some codine if it will work so she can go to school more she tried the marajuana route helped with headaches only but she does not seem to get them much since quiting the entocort. the joint pain is a real hinderance to her i am thinking the doctors will be changing her meds again when we go later this month.


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## Crohn's 35

So sorry your daughter is having problems.  I am surprised she got lowered doses.  She maybe need to see a Rheumatologist to help with the arthritic pain.  Headaches could be from Pentasa, I am on them and I dont have that problem.  Could be something else.  When is her scope and what Country are you from?  Best of luck for you and her.


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## timmie29

We are in BC canada her dose was lowered because she initially seen an adult specialist and was referred to the childrens hospital she was getting the headaches from the entocort which she is weined off of now but the pentasa does not seem to be doing anything for her. i have a call in to the specialist and hope that they will be able to help with the pain she is in but that can take time too i had called last week about a test she is supposed to get done closer to home and have not heard back about that yet. so i am off to the pharmacy to get her some tylenol with codine and see if she can tolerate that. thank you jettalady just frustrating trying to get this under control.


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## Van

Ive been living with Crohn`s for 35 years now and could see how some people could become tolerant and eventually addicted if not carefull in using them. I myself have tried numerous pain med`s over the years and currently take 20mg of oxycontin 3 times daily,percocet 2-3 times daily. I see my doctor regularly and have blood tests done every 3 months.


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## fabiola7386

Hello GNC Crohn's Man..
I liked your post..
It was the whole fact about addiction what you posted.
Thanks for sharing it!!!!


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## whysoserious

Wait wait wait I'm confused. So are you not supposed to take pain medication when you are having a flare up? It can make your intestines explode? Why did the ER doctor not tell me this?!!? :confused2: When I have flare ups the only thing that gets me through is hydrocodone.


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## kello82

um ok so i feel like absolute crap for the past 12 hours. im thinking that my system is COMPLETLY rid of the fentanyl now, i took off the patch on wed and supposedly it takes 34 ish hours to completely dissappear.

the past few days have not been great, crawling skin/spasmy legs and such, hot flashes and cold sweats, etc. but over night my leg muscles ACHE so much, nausea, headache, and most worrying a fever thats gone up to 102.7. i seriosuly feel like ive been hit by a truck

i know all these things can be symptoms of withdrawals, but i guess im hoping for some reassurance? anybody have any expereince coming off this crap after prolonged use? how long do the withdrawals last? is all of this to be expected?

if anyone has any thoughts, thanks a bunch!


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## wqcoleman

hang in there kello.. you were on a serious opiate for a while, it will take your body a few weeks to start "creating" those endorphins again.. the perco's will help, in that they will taper you.  you should talk to your doc about a better taper, since going CT (cold turkey) is not the best idea.  If you're on those opiates for longer then a few months, you will become addicted to them, there is no way around the problem.  The doc should help you taper down to manage the withdrawal.

therein lies the problem with these drugs, they are awesome in helping us live a somewhat normal life while we are in a flare or surgery, but getting off them is just a nightmare.

I recently had surgery to repair a hernia that was operated on in 2009, since the first one burst and I needed to get it fixed, again... love these surgeons.  

I was in a flare for most of 2009 and I was totally against having any surgery until I felt better.  I had it 6 weeks ago, was on those meds for 4 of the six weeks, had some complications with infection (we crohnies are 1000x more susceptible to infection due to the drugs we take), and have been on and off them.. Every time I stop them (or run out), I get the creepy crawlies, cravings, etc for 3-5 days, even at a low dose like vicodin or norco.  

Good luck.. you'll feel better in a few weeks and talk with your doc about a better taper.. might help.


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## HospitalPatient

Greetings.  I read a few Posts about "Addiction" and Pain Meds but my experience has been that once I put my TRUST in the right Pain Management Doctor and I follow his or her specific instructions and comply with the Rules of the Practice  - they help me manage that VERY fine line of "Dependency" vs. "Addiction" which we chronically ill patients often find ourselves.

I've had Crohn's Disease for 25 years and I've written a critically acclaimed Book about it and I also recently posted a Video on You Tube regarding "Pain Management" and "How to Select a Pain Management Practice that is Right for YOU and YOUR LIFESTYLE."  Apparently, I am not allowed to post Links yet but you can contact me directly.

I've always looked at it this way:  The Crohn's Disease changed my life in so many ways that if there were a way to "get back" some control - I was going to do so.  Well, seeing a Pain Management doctor helps me do that.  Other people feel differently but I don't see the point to suffering so long as the Addiction aspect is regularly monitored.


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## HospitalPatient

Kello82:

Hi.  I'm new and must get off the computer in a minute but I can SO relate to your dilemma that I had to respond.  I've had Crohn's for 25+ years, 100+ Hospitalizations, 10-15 Major surgeries, written a critically acclaimed Book, etc. and I see a Pain Management Doctor Regularly - so - I believe I am credible on this issue.

Fentanyl seems rather benign as a "Patch" and my experience has been that it does not become addictive "Mentally" like the typical Narcotics we are used to (at least for me) but the Body become PHYSICALLY ADDICTED to it BIGTIME and thus you have to be VERY CAREFUL how you get off of it in terms of tapering down.  I don't know how much you were on but let me give you an example of my last experience with it.  It is a LONG story so I will spare you the details but because I had Two (2) surgeries within 3 months of each other - they couldn't find a Pain Med that would work for me. Finally they tried Fentanyl and it worked.  The problem was that in the Hospital my tolerance built up to a dosage of up to 300 MCGs DAILY and that is an OBSCENE AMOUNT - but I was completely lucid.  

I think I dropped 50 mcgs every 3 days or so until I got down to 150 MCGs.   Then I wanted to continue this systematic detox but my body did not agree.  In fact, once I got down to 100 MCGs, I got so fed up with the slow nature of the detox that on my way to see my Pain Management Doctor I tried to just go cold turkey.  Well, it didn't work so well.  I lost complete control of my bowels (in a NYC Taxi Cab - which was embarrassing but hysterical at the same time) and almost had to be hospitalized for a variety of possibly life threatening symptoms.

Accordingly, I had to METHODICALLY drop 25 MCGs every 3-6 days (under the supervision of the Pain Management Doc) and it took a few weeks until I was down to ZERO.  If you try to do it any other way - you will experience Physical/Mental withdrawal.  Depending upon how much you were on - and for how long - will determine the severity of the withdrawal symptoms.  Clearly - you can't go from 300 MCGs or even 100 MCGs to Zero without weaning down.  So, PLEASE be careful and take all of thsi into consideration and speak with your doctor.  If you do it Methodically (i,e, 25 MCGs every 3 days) - it is PAINLESS.  But if you try it any other way - it is MISERABLE and could land you back in the hospital (or dropping a deuce in teh back of a taxi cab!)  Good luck and please feel free to contact me directly if you have more questions.


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## Crohnsgal

*Never ends, does it?*

Hello everyone! I have had crohn's (diagnosed anyway) for just over 8 years. Had a temporary ileostomy and a re-section as my welcome to the disease. I was in remission after that for a couple of years and then my joints started aching. I had no idea what that was all about but found out later that it was another blessing of this disease. Gotta love it. 
Since then, abdominal pain, joint pain and ongoing everyday things. I have been on and off narcotics for the last few years. It controls the pain so I can still work and be a functional mother to my daughter. In any case, a couple of weeks ago I went to the drug store to get Claratin as my eyes were getting watery and swollen and I figured it was allergies. Strangest thing though.... After taking it for a couple of days, my Crohn's pain has all but disappeared. Ibuprofen occasionally but nothing else!
Started doing some digging on this craziness and it turns out antihistamines are in fact used to treat crohn's, parkinsons and MS. I don't know if it would work for everyone but I couldn't keep it to myself! 
Sorry for the long post.. I hope this might help another sufferer like myself
Take care everyone!


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## Rebecca85

Just a quick warning- Ibuprofen is not recommended for use by people with Crohn's as it is a nsaid and can irritate the stomach and gut (like aspirin). I was told to stick to plain paracetamol for mild pain relief.


----------



## mneilsen2084

Skinsfan1229 said:


> There are a lot of meds without codeine. Do you even need something that strong if you were only taking t3's in the past? Its highly unlikely for someone in real pain to get addicted also.


I do not believe this to be true. If the pain lasts a long time and the patient needs to medicate the pain away, they are inevitably going to become at the very least somewhat Dependant on that med. 
I used to get prescribed percaset for my stomach pains during flare ups, but started feeling like I needed them even when the pain levels went back to normal. Now Sadly I am to afraid to ask for pain killers and just bare through it. 

To the original poster, I am sorry you are still having headache's. I do not know if yours are similar to mine or not, but I rate headaches of this nature right under the pain of crohn's except less bearable because it is the head that hurts. Then I get even more nauseous and sick. Sometimes I can lay down in a completed darked out room and it will pass, but usually I end up in a cool temp tub soak with a trash can next to me for the up-comings of my stomach. So I really do empathize when I say I am sorry you have to suffer through this pain on top of everything else.


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## mneilsen2084

Rebecca85 said:


> Just a quick warning- Ibuprofen is not recommended for use by people with Crohn's as it is a nsaid and can irritate the stomach and gut (like aspirin). I was told to stick to plain paracetamol for mild pain relief.


Is paracetamol like Tylenol?


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## David in Seattle

mneilsen2084 said:


> Is paracetamol like Tylenol?


Paracetamol = Acetaminophen = Tylenol.  It does not pose the threat of bowel irritation  that the NSAID's do (Naproxen, Ibuprofen, Aspirin and the COX-2 inhibitors like Celebrex) but in doses not all that much higher than typically used for pain, it can be hard on the liver.


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## Crohnsgal

The problem I have with Tylenol is it doesn't do anything for me. It doesn't have the anti-inflammatory properties like ibuprofen. When you need relief from the pain, you take what works. I haven't noticed any ill effects on my gut from the ibuprofen. That's just me though, not saying anyone else should use it.


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## mneilsen2084

Ah ok  thank you for clarifying this question for me.


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## Rebecca85

That's fair enough, just thought I ought to say something in case a) you weren't aware and b) a newbie might read it and think Ibuprofen is safe to take for everyone.


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## mneilsen2084

Oh no, Three years ago, when I got diagnosed it was because I had been taking 4-6 Ibuprofen a day for back and stomach pain. It made me pass blood so bad that the whole toilet was red. I was not sure what meds I could take though.


----------



## kello82

HospitalPatient said:


> Kello82:
> 
> Hi.  I'm new and must get off the computer in a minute but I can SO relate to your dilemma that I had to respond.  I've had Crohn's for 25+ years, 100+ Hospitalizations, 10-15 Major surgeries, written a critically acclaimed Book, etc. and I see a Pain Management Doctor Regularly - so - I believe I am credible on this issue.
> 
> Fentanyl seems rather benign as a "Patch" and my experience has been that it does not become addictive "Mentally" like the typical Narcotics we are used to (at least for me) but the Body become PHYSICALLY ADDICTED to it BIGTIME and thus you have to be VERY CAREFUL how you get off of it in terms of tapering down.  I don't know how much you were on but let me give you an example of my last experience with it.  It is a LONG story so I will spare you the details but because I had Two (2) surgeries within 3 months of each other - they couldn't find a Pain Med that would work for me. Finally they tried Fentanyl and it worked.  The problem was that in the Hospital my tolerance built up to a dosage of up to 300 MCGs DAILY and that is an OBSCENE AMOUNT - but I was completely lucid.
> 
> I think I dropped 50 mcgs every 3 days or so until I got down to 150 MCGs.   Then I wanted to continue this systematic detox but my body did not agree.  In fact, once I got down to 100 MCGs, I got so fed up with the slow nature of the detox that on my way to see my Pain Management Doctor I tried to just go cold turkey.  Well, it didn't work so well.  I lost complete control of my bowels (in a NYC Taxi Cab - which was embarrassing but hysterical at the same time) and almost had to be hospitalized for a variety of possibly life threatening symptoms.
> 
> Accordingly, I had to METHODICALLY drop 25 MCGs every 3-6 days (under the supervision of the Pain Management Doc) and it took a few weeks until I was down to ZERO.  If you try to do it any other way - you will experience Physical/Mental withdrawal.  Depending upon how much you were on - and for how long - will determine the severity of the withdrawal symptoms.  Clearly - you can't go from 300 MCGs or even 100 MCGs to Zero without weaning down.  So, PLEASE be careful and take all of thsi into consideration and speak with your doctor.  If you do it Methodically (i,e, 25 MCGs every 3 days) - it is PAINLESS.  But if you try it any other way - it is MISERABLE and could land you back in the hospital (or dropping a deuce in teh back of a taxi cab!)  Good luck and please feel free to contact me directly if you have more questions.


thanks for the info!

i have been fent free for quite some time tho, so im good now

holy hell 300mcg???!?!! thats horrible!

i was on the 12 for a while, then up to the 25 prob for a good 10 months or so. then came down to 12 for a week and then 0. still tho, the w/d's were awful. nothing like sh*tting myself in a cab lol, but still. i remember just laying in bed, semi asleep, but like whimpering every 2 minutes without even meaning too. the crawling was just disgusting. it was like a layer of cell phones on vibrate between your skin and muscles. all over. makes ya a tad twitchy hahah i wish i had a vid of myself now....
i was also on perc 5/325 a good 3-5 times a day. i still am now. 
so dont really know why it was so bad for me. i mean that is minor minor stuff, and still i went down by 12!! once a week! hmm ok well maybe cuz i was like 90 pounds hahah i just thought of that.

and yep ditto on that the fent patch is not really addictive MENTALLY. totally agree. since its constant you get no buzz whatsoever, even in the beginning. no highs and lows, so it worked very well for me.
other than a massive personality change, it was lovely!

bwahaha, hey we chatted on twitter yes?? hospitalpatient?? watched your vid! unless there are two people who use that moniker but i mean that would be crayzey.


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## HospitalPatient

May 31, 2010

Kello82:

Greetings.

Yes – I am the same person on Twitter and with the Videos and whatnot.  The Administrator of this Forum has asked me to refrain from even mentioning the Videos or my Book in a promotional manner since that would be akin to I suppose using this Forum for Commercial Gain.  I understand their concerns  and thus I will respect and will obey their policy.  Based on the Patient Feedback I have received from some of them, I happen to disagree with this Policy in my situation since I think my Forum Responses stand on their own in terms of my intent to use this Forum strictly to share my experiences to help others – but – I’m New to them so I understand their position.

As for Fentanyl, YES – 300 mcgs was INSANE – but I was in a situation where I had two (2) very serious surgeries within a few months of each other and my body simply didn’t respond to anything but Fentanyl.  Then my tolerance grew very quickly.  As you pointed out in your Post, it is a strange drug in that you don’t get “mentally hooked” and for me that was actually VERY DANGEROUS because when I was recuperating and just starting to come down from the 300 mcgs I tried to DRIVE not thinking I was that impaired – but I was SERIOUSLY MISTAKEN.  Thank God I realized it before I went too far and then I gave up Driving until I was down to 50 mcgs or so.  

I am surprised that you being on Percocet didn’t help with the withdrawal – even a little?  I also didn’t know that Fentanyl comes in a smaller Dose than the 25 mcg Patch?  It is amazing how potent even that 25 mcg Patch can be – which you learn when you try to stop cold turkey.  In any event, I hope you are “thru the woods” with the drug withdrawal and have had the chance to enjoy the weekend.


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## Rebecca85

mneilsen2084 said:


> Oh no, Three years ago, when I got diagnosed it was because I had been taking 4-6 Ibuprofen a day for back and stomach pain. It made me pass blood so bad that the whole toilet was red. I was not sure what meds I could take though.


Now that you mention it, before I went in hospital the first time I had a really nasty virus. I had the worst sore throat ever (worse than tonsillitus) and was taking 6 ibuprofen a day for 2 weeks (and cocodamol which is paracetamol and codeine). And I was told to gargle with soluble aspirin. I always assumed it was the virus that triggered my symptoms but it was probably the nsaids.


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## mneilsen2084

Rebecca85 said:


> Now that you mention it, before I went in hospital the first time I had a really nasty virus. I had the worst sore throat ever (worse than tonsillitus) and was taking 6 ibuprofen a day for 2 weeks (and cocodamol which is paracetamol and codeine). And I was told to gargle with soluble aspirin. I always assumed it was the virus that triggered my symptoms but it was probably the nsaids.[/QUOTE
> 
> Yeah I just barely learned about NSAID's recently. I had never known why people with crohn's cannot take certain pain meds.


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## Rebecca85

In my defence I hadn't even heard of Crohn's back then!


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## mneilsen2084

Hey, do not feel bad, some of the ER doctor's I've seen don't really know about crohn's, and its their job to know medical information like that.


----------



## Vivvian's Mommy

When I was 16 I got addicted to Morphine.Sadly it was even in the hospital.The nurse misread something and for every 5mins. I was getting 1mg through the push button.They weaned off with Vicodin at 725mg and then I became addicted to that and was sent home.My mom ended up cutting me cold turkey.She locked it in a safe.I would be sick for a few days and the pain for me was baad even though it wasn't pain from the Crohn's it was that gut wretching feeling when you get really agitated.Eventually though I did better.Now I take Tylenol and being that my husband was in the ARMY the Military hospital liked giving Percocet for any pain small or big.But I did good having the help from husband I only took it when need be.


----------



## kello82

hey ok so the past week or so i have been taking about 1 5/325 perc a day. which is great! the pain has not been affecting me as much, before this some days i was taking up to 3 tabs.

but thing is that the past week my mood has been very weird. not depressed cuz i am actually quite more productive than i was at my lowest, but just supremely anxious, nervous, antisocial feeling, fear, low self esteem and all this crap.
even just meeting up one of my really good friends gives me that visceral feeling of terror in my stomach you know? in the past week i have blushed 3984309 times and i RARELY do that. like litte tiny things make me horribly uncomfotable and self concious and just afraid 

could this be because of the reduction in the amount of perc? i mean the reduction seems SO minor....i have no physical symptoms whatsoever unless it has been 24+ hours without taking one...then they are minor.

sooo is this just coincidence you think? i dunno what to think cuz when i came OFF the fentanyl patch i didnt have this drop in mood, i just felt like absolute CRAP physically for a few days and then felt a lot better emotionally. felt very unclouded as i came off of that med.  but maybe since my depression was worse overall then it didnt affect me the same way. cuz in the past month my spirits have been slowly getting higher so therefore the bad feelings from coming off narcs actually changed something and i could notice it?

meh????


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## texasmade89

The first time I went to a pain management doctor he suggested suboxone, a drug used for to prevent withdrawal for those coming off large doses off opiates. I'd recommend it since you will need continuing pain treatment.  They say it's not addictive but it is a partial opiate agonist (does make you feel kind of good) I would disagree. Any pain med with narcotic effect is addictive. It made me nauseous, killed my appetite even more, feel like I had the flu and did not relieve the pain; I've never had such a bad experience with a pharmaceutical. I'm just getting off it today and will be taking prednisone until I can see a different pain management doctor. Yeah the side effects were worse than prednisone.

I'm guessing I had this reaction because I was not at the time nor have I ever been on high doses of opiates.  This thread was too long to read every response, so my bad if somebody already suggested this.


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## misterquin

Ahh pain medication. My opinion of it has changed a lot since diagnosed. At first I was popping them like skittles and felt almost "normal." after my symptoms started clearing up though, I realized I was taking them even when I didn't need them. Basically I was dependent on them. Now I will take them only in dire circumstances where I feel unbearably bad. It's very easy to become dependent on them even with chronic pain. Also, I worry that they're rough on my stomach since I had gastritis before.


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## MysteryLocket

GNC Crohn's Man;13499Remember if you are having intestinal pain then thier is only so much you can do... 
You can not take NSAID's they will cause your crohn's to flare...

[url said:
			
		

> http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202743.html[/url]
> If you have active inflamation in your bowels then you CAN NOT have narcotic based pain meds...
> 
> Anything that is narctoic based will cause intestinal slowing and blockage and will only make the problem worse... You may feel pain free, or at a lower amount of pain for a few hours, but be in even worse pain 4 hours later... Thus you take another pain pill to killl the pain that the pervious pain pill caused you as it passed through your body... Very fast way to get addicited, hospitilized, or even dead if you do this... Yes your intestines can rupture.... If you have lots of pressure (if you feel super bloated all throughout your intestines and stomach) then do not take a narcotic based pain med. Very much so if you are then going to take a phengran and try to eat (you may be starving due to a high prednsione dsages). If you do this then your intestines can rupture... If your instestines rupture then well you will either die or be live with a very very very not pretty pitcure of what is left of your intestines..


 .... :eek2:
wow... this is the toss up i've been doing... (that is until I ran out of pain meds) ... use hydrocodon/apap for pain every 4 hrs when pain would strike up. then when the nausea sets in i'm using promethazine (which i think is phengran)... and I am bloated with pressure as we speak, and haven't had a bm since tuesday (though i went to the er and they just sent me home after doing a liver/thyroid blood test and pregnancy pee test on me) (no they didn't even examin me.. i requested a ct scan and they said in my life time with crohns i will have to have many of those, and they aren't going to give me one, because of all the radiation.  I goto my primary doc tomarrow (that's IF medicaid transportation doesn't leave me hanging again).  :ybatty:
I'm glad i opened this thread up and read it!


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## cdugas8

Hey everyone! I just wanted to talk about what has worked for me. 

I use medical marijuana for the pain. But, I don't smoke it, because that is not where the relief is. I've heated up marijuana plant matter (the buds and leaves) in various oils, alcohols, and milks. What works best is to heat it up in goat's milk. I have actually started gaining weight and sleeping through the night this week by ingesting the goat milk everyday. I drink it about 20 minutes before I eat a meal as it coats my stomach and intestines with the anti-inflammatory properties. I was pretty high for the first 2-3 days which was embarrassing (being the owner of a business!) because I didn't expect it as I have smoked for pain for the last year. But, the pain was absolutely gone that very first day. Now I take it and don't feel high anymore which is great because it's working on my intestines the entire time! 

No side effects. Not one death from marijuana ever. No physical dependency, although habit forming. 

We have CB1 and CB2 receptors in our intestines (specifically people with Crohn's disease) that bind to the cannabinoids in the plant (thc, cbd, cbn). Just google these things for research or you can see links to research on "marijuana and crohn's" on my blog. 

Also, this place was great for the recipe: marijuanasaveslives.org. It was founded by a man named Brett who says he "saved" his wife Keri from her Crohn's by this milk. He's really sweet and will talked to you in a hushed voice for an hour because he's at work  Happy days! Nikki


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## Outpatient

I just started to go to a pain management specialist about 4 months ago. Sadly there is not much more that they told me that I can do other than what My DR.s have me doing right now witch is percocet and humira. I have also been in Tramadol (did not work) as well as tried Marijuana once I did not like it. But I am just glad to know that I am not the only one that is on pain meds for crohns. I also want to ask if anyone feels like they are looked down upon for taking pain meds on a regular basis such as percocet? Maybe it is just me.


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## EyesofThunder

I am trying to help figure out what is good/bad that my mom is taking for Crohns and Ulcerative Colitis.  She is taking Darvocet (around 8 pills a day, 3-4 just to get thru the night) and sometimes OxyCodone or Tylenol 3.  I am very worried that she is OD'ing on tylenol.  

She is bleeding again, it is flared up pretty badly.  

She is in her mid 60's.  I don't think this much pain meds are good for her, but she needs it to deal with the pain.  What should she be doing?  I am pretty far from her, so I can't be there to help, which is frustrating.  

Thanks!


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## Jenny06xx

Here goes lol 
I was on codeine 30 mg ( no paracetamol) for 6 years !! For diarrhoea as I was told ibs ibs ibs it was the only thing that worked to slow me down, I started on 2 a day and ended up on 8 to 10 a day for the d and pain because I couldn't function without them ( not addicted but dependant for the relief) when the pain was too much I'd end up in the hosp again no tests ibs u know the drill!!
I stopped the codeine myself cold turkey worried they were causing my pains, I felt like I had the flu for a week and couldn't sleep etc I won't go into detail !! I ended up in hosp about 5 times that month due to pain and no relief so I was handed back codeine and realised they did work and weren't causing my pain but I was still tolerant to high doses and needed the max a day for relief and still ended up in hosp, thankfully this is when tests were done and I was diagnosed with crohns and given proper pain relief I stopped codeine an switched to tramadol and they are fantastic for me at the moment and when they stop being effective I will ask to switch again to something else.
I hate having to take them I hate the looks off the receptionist at my doctors, I hate people commenting u take too many tablets etc but I don't see why I should suffer in pain all day and not be able to go out or look after my kids or cook a meal, I don't care if I get addicted/dependant I only take them as needed and always will if I need to.
No one should suffer in pain what kind of life is that ? If your in hospital in pain they give you pain killers so what's the difference taking them at home when in pain?
And if my doc took me off them and I was genuinely in pain I would find a way of getting them if I had to in my eyes no one should suffer on pain you won't get a medal for it 
Jen XX


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## Jessica

EyesofThunder said:


> I am trying to help figure out what is good/bad that my mom is taking for Crohns and Ulcerative Colitis.  She is taking Darvocet (around 8 pills a day, 3-4 just to get thru the night) and sometimes OxyCodone or Tylenol 3.  I am very worried that she is OD'ing on tylenol.
> 
> She is bleeding again, it is flared up pretty badly.
> 
> She is in her mid 60's.  I don't think this much pain meds are good for her, but she needs it to deal with the pain.  What should she be doing?  I am pretty far from her, so I can't be there to help, which is frustrating.
> 
> Thanks!



I've had Darvocet in the past.   It didn't touch my stomach pain though, so I can see the 8 pills a day.  My doc just gave me Tylenol 3's to take since I had been loading up on 4,000 - 6,000 mg a day of regular Tylenol.  I haven't noticed that big of a difference with the 3's.  But being mindful of the codeine makes me take less.  

If she's in that much pain, I'd suggest trying something else for the symptoms.  Maybe a change of her regular Crohn's meds.  I'm still new to Crohn's (2.5 yrs), so I'm not sure.  Just make sure that her doc knows how much of what.

<3


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## EyesofThunder

I asked her what she is taking now, what do you find that helps diet wise?  Anything that is very helpful?

I had the beginnings of an ulcer many moons ago and I found Cottage Cheese was very comforting to my stomach.  fortunately it never got bad and went away never to return.  My wife was cooking a lot with red pepper, I guess I didn't get along with it.

My mom is trying everything to avoid going to the hospital, she thinks they would admit her if they saw her right now.  I wish I was down there to help out.  So frustrating seeing family go thru something so hard and not being able to help.

Thanks so much!


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## Jessica

EyesofThunder said:


> I asked her what she is taking now, what do you find that helps diet wise?  Anything that is very helpful?


For the most part, a low-residue diet usually helps me during flares.  Google that and you'll get an idea of what to stay away from.




EyesofThunder said:


> My mom is trying everything to avoid going to the hospital, she thinks they would admit her if they saw her right now.


This makes me think that she should probably go to the doctor at least, if not the hospital.  One thing that I've learned with Crohn's is that ignoring symptoms doesn't make them go away.  It makes everything worse.  I ignored my symptoms for about 9 months before I saw a doctor.  Boy, did he yell at me!  If she doesn't want to go, consider calling the doctor yourself.  Maybe just talking to a nurse will pose them to call her and talk her into coming in to their office at least.

I hope everything works out!  This is a great forum for advice.  I wouldn't be surprised if you found other "caretakers" on here for advice about your Mom.  As for you, I hope that the ulcer never comes back.  And red pepper is something I only do when I'm brave.


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## Crohnadian

I tried on hydromorphone, hydromorph contin, oxy contin, morphine, tylenol, and ibuprofen. The ibuprofen put me in bed in dire pain for nearly a week. Tylenol hardly does anything, while morphine makes my pain worse and oxy contin is hardly effective. Hydromorphone (dilaudid) and hydromorph contin (slow-release, long-acting dilaudid) are the only ones that worked for me, and in so, they got me hooked pre/post-op, so I'm experiencing a bit of withdrawal now that I'm coming off it, but nothing too serious. Some shakes, anxiety, sweats, chills, sneezing, but I'm sure they could be much more intense than they are so on complaints.


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## Jess722

I'm wondering if anyone has been addicted to Dilaudid?  Whenever I go to the hospital for a flare up they give me Dilaudid and at first it works wonders and takes the pain away but I've noticed after a few days it takes a higher dosage for the same effect. Does this mean I'm addicted or maybe my body is becoming tolerant to it?


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## Crohnadian

Yes Jess as my post immediately before yours stated, I am. It's the hydromorph contin (long-acting) that I am referring to however it has been both (including hydromorphone) at one point. I also required consistently higher doses to achieve the relief I needed


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## Jess722

Hi Crohnadian, 

Sorry I must not have read your post thoroughly. I was kind of skimming towards the end of the thread since it's long.  But you bring up a good point. It's scary that the very drugs that bring us relief can also pose a danger. Now whenever I feel a flare up coming on, I'm nervous to go to the ER because I know they're going to give me Dilaudid and the cycle will begin all over again.  But I don't see any other way around it...


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## Crohnadian

I've found the more I worry about it the worse it is, so I try to put aside the fact that I can become addicted because then I stress out too much and get nowhere lol.. my parents were the really worried ones- especially my mother- but the withdrawal really wasn't as bad as I had suspected


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## Jess722

That's true. I've done some online research about Dilaudid and addiction and the results were crazy. Apparently Dilaudid is equivalant to heroin, in the way that it gives you that euphoric feeling and is hard to ween off. That's scary. I guess the next time that I have to take it, I'm going to ask for the lowest dosage necessary.


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## pais16

Dilaudid is the only thing that seems to work for my SO as well.  He just had surgery and had his PCA button for 8 days..sure enough he went into massive withdrawal when they switched him from IV to oral the day prior to his release.  He is doing okay now- but pretty much needs to take it every 4 hours (4mgs).  We hope to start weaning him down later this week.  He used Suboxone for pain management the last couple of years- weaned off for surgery, so we expect to switch him back to that to get off the narcotics.  Then he will have to wean off that...again.  But sometime soon- he should finally be pain free for awhile so I hope it won't be quite as tough this time.


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## MotherMary

I'm so glad I stumbled into this forum.  My husband of 20 years has had crohn's disease for 30+ years.  He's had 3 resections and only 1/3 of his small bowel left.  He only has occasional flares, but because of the resections has short bowel syndrome and all of the malabsorption problems.  In the past he was treated heavily with prednisone and has many of the side affects associated with it.  One of the biggest problems now is the addiction to the pain medications for the reactionary arthritis.  He has taken opiads for more than 25 years.  Started out with tylenol #3  and slowly progressed to stronger and stronger meds.  4 years ago he went on the methadone to get off the oxycontin.  3 years ago we moved out of state, had to find new doctors etc.  The new pain specialist kept him on the methadone but added the vicadon for breakthough pain. The addiction is once again bad (still not close to when he was on the oxycontin though).  I hate having our lives controlled by pain medication.  Reading these posts have helped me maybe be a little more understanding that he may actually be having pain that warrents the meds.


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## Lisa

I'vwe never been prescribed pain meds (other than getting htem in the hospital).....unfortunately, I have an adverse reaction to Morphine ('Red Man's)....AND am allergic to Dilaudid!....as in anaphalxyis.....thankfully when I found out I was already in the hospital!

My brother was addicted to morphine from long-time use of it for hip pain - he was thankfully able to QUIT last year - after 2 surgeries.....and having ketamine and fentanyl taking the place of it.  The worst was the change in his whole behavior/demeanor - which is NOW finally back to normal!


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## Grumbly-Guts

I had a hx with morphine, came off it b/c it was literally killing my organs.  Tried non narcotic pain meds to no avail!  I even contemplated suicide.  The I met my new GP who knew of my past and said GG you have pain, you are not a martyr, you are human and nobody will blame you for taking something stronger so you can get out of bed send the nurse home and spend some time with your children!  He put me on percocet and later pain spec. added fentanyl patches.  I have a hx of narcotic addiction, under which type?  To be honest I don't really know, nor do I think it really matters.  Addiction or no addiction it is inhumane to be expected to suffer with pain.  I would however recommend meeting with holistic docs/therapist (ie. accupuncture, massage, physio, meditation etc.) and try anything and everything before you decide to go back down that road of narcos.  I tried almost everything and needed them.
My mother had a huge issue with me taking narcos and saw me suffering in hosp. so caved, then I became add. to morphine and she spent $10,000 sending me to another country for specialized tx specific to my addiction from rx (so there was ppl there with chronic conditions and pain add. to their meds as well).  I lasted 10mos. off narcos after that (need to tell u tho, when I go to ER is the ONLY time I take morphine now, and will not take anymore than 2 iv doses, after that I switch to something else, and when i'm admitted I request NO morphine for pain).When I went back on it I thought my mom was going to lose it b/c of the $$$ she spent getting me off it (to save my organs), she didn't, she cried and cried and cried tho.  She was so sad that I was in so much pain (not just physical) and she told me from now on even if the meds were going to wreak havoc on my organs that I might as well have a good life with my children, be happy and as comfortable as I could, improving my quality of life, and if that shortened my life span shortly than at least it was a shorter better life not a longer intolerable life where my kids also paid the price.  It's not worth it!
Besides the narco's side effects of slowing my bowel...to me that's an extremely beneficial side effect!!  Less trips to the potty, tooshy not as sore, less accidents and urgency, just a little more crampy right before a bm.

GG


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## MotherMary

My husband has made the comment that he'd rather have better quality life with a shortened life span than a longer life being incapacitated without the pain meds.  He actually functions pretty well on the prescribed doses of Methadone and vicodin.  But be warned - if you are in a traffic accident and they find out you are on prescribed narcotics you can and most likely will be charged with DUI.  My husband found out the hard way.  He was in an unfamiliar city and went down a one way the wrong way on his motorcycle and had a wreck. It was very costly.


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## Nytefyre

I agree with your husband, MotherMary!  Good advice about safe driving while on meds, too!


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## sick-of-crohns

I would never point my finger at anyone for using or abusing pain meds because of Crohn's disease. I'm not in their shoes and I would not tolerate someone telling me I should not take pain meds because of my medical problems. No one should judge someone else for it.


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## sabin

When i am in pain i usually take Paracetamol painkillers. 

Are they dangerous when my Inflammation is active?


----------



## stevereds

I'm sure many of us  whith moderate to severe Crohn's, with surgeries and  complications have all taken pain meds thoughout  the years on and off.
I have had my share of feeling addicted to the pain meds, it doesn't take too much time actually.

If you are taking pain meds for a few months straight, you will probably feel withdrawal effects if you stop cold turkey.... best bet is to wear yourself off the painmeds.  take less n less everyday. and you will be able to have much less withdrawal effects when you stop taking the pain meds.


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## SwtNdSpcy

mneilsen2084 said:


> I do not believe this to be true. If the pain lasts a long time and the patient needs to medicate the pain away, they are inevitably going to become at the very least somewhat Dependant on that med.
> I used to get prescribed percaset for my stomach pains during flare ups, but started feeling like I needed them even when the pain levels went back to normal. Now Sadly I am to afraid to ask for pain killers and just bare through it.


It is actually true that people in real pain who are on a reasonable dose of pain relief medication i.e. it relieves your pain, but not on enough to make you feel high, most likely will not become mentally dependent. 

Physical dependency happens with quite a few medications, not just narcotic pain relievers. So, in my opinion, this shouldn't stop someone in real pain from seeking help. 
All drugs carry risks (Just read the warnings on Imuran or Remicade! I always get a sinking feeling when I read the pamphlet on my Imuran.).
For me personally, my last surgery caused so much structural damage that I wake up every morning at about an 8 on the pain scale. I have always been able to handle a certain amount of pain, if I knew it would END at some point. This pain has not lessened at all in the last year, and I think if it weren't for lortabs, I would have gone insane by now!


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## silvermander

I remember very little of when I was suffering with a HUGE flare when I was 8 years old.  The one thing I do remember was a friend who lived down the block came to visit me.  I'd been out of school most of the school year and it was spring, so she came over.  While she was there I got a pain.  My pains at that point (one of the few things I remember vividly) used to curl me in a ball and leave me screaming at the top of my lungs.  By the time my mother got to the living room, where we were hanging out, she was gone.  Needless to say she ran all the way home in absolute terror and never spoke to me again - even after I was back in school.

	At that point they gave me a little Tylenol 3, but other than that, nothing.  I ended up in surgery because I was bleeding so badly internally.

	When I was 16 I had another huge flare.  They gave me a little Tylenol 3, sometimes Darvocet, but I was in high school and zoning out was not an option.  I again had surgery as no meds have ever worked for me.

	I was put on tramadol somewhere in here, but it did nothing at all for me.

	In college I had a HUGE flare.  I spent a week in the hospital to let my guts relax, but I refused to drop out as I was 2 weeks from finals.  My doc let me go back to school, but kept me rather drugged up on Percocet.  More surgery.  Two this time - 1 year apart.

	When I was 25 I had yet another surgery.  After this one my doc told me there was this great new med out for pain, Oxycontin!  Yeah, not the best med.  Yet again the surgery didn't put me into remission for more than a week.  So I ended up staying on Oxycontin for 8 months.  I realized that I was either in raging pain or loopy and didn't like either.

	I brought myself to the local hospital where I was checked into rehab.  I was not the only Crohnie in there who was having troubles with pain meds and finding the right thing.  In the end my doc put me on methadone.  Not the liquid, but the pill form.

	Yes, methadone is that med that most people think is only for heroin addicts.  The thing that most people don't know about is that it's the only narcotic pain killer that doesn't require more to get the same effect.  For me that was key as nothing else had worked.

	I have been on methadone, varying levels, for 12 years.  When the pain isn't bad it's very easy to drop to low levels.  When my pain levels are insane - like right now - my doc raises my levels.  Right now I'm on 100mg/day.  I've easily dropped from 120mg to 40mg when my pain levels drop.

	In the middle of this we've tried other meds, most notably the Fentanyl patch.  Not only did it not do anything for my pain, but it left me with fantastic bruises.  I had rectangular bruises an inch bigger on each side of the patch.  Itchy, painful, ugly, didn't stick and didn't help.

	While I know a lot of Crohnies can't tolerate narcotics, I still have massive 'D' everyday.  I'm in there 8-10 times a day and dropping little more than liquid.  In the beginning it helped me a little with the 'D', but it didn't last long.

	I also know that I deal with a lot more pain than many others with Crohn's.  my doctors through the years have mentioned that to be the case.  I actually have a rather high tolerance for pain, but when it gets to a certain point I crumble.  I feel like I've been very lucky to have the amazing pain management doc.  He's always there when I need him, even on Facebook if I need him to be.  He's funny, sweet, silly, but really cares about his patients.  He's not the one who put me on methadone, but he's the on who took over for that doctor.  He even gave me a ride on his Harley after one of my appointments.  He's there for me like few doctors have been and listens to what I have to say and what's going on with my body.  I see him once a month, we talk, discuss everything from pain to stress to our dogs.  He writes me a prescription for the month.  My pharmacy always has my pills on hand.  I feel very lucky to have found something that works wonderfully for me.


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## Maxwheel

Oxycodone works really well for me. I can't take it too regularly as I tend to get constipation from severe narrowing right now, but it's perfect for those extremely severe days a I get once a week or two.


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## mbirnbaum

*addiction*

I was diagnosed with crohns when i was 10. I was addicted to demerol by the time i was 13. I finally found an addictionologist/anesthesiologist who prescribes when I need medication. They do use buprenorphine for addicts who need pain relief or other meds if someone holds them for me. I know it sucks but diet is the best answer--mike


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## heirloomveggies

I've been trying to not see a pain management doctor where I live because the local ones have a bad tendency to fire patients who aren't going to recover or are chronic disease cases. 

Right now all the Internist will let me have is Asacol, Tramadol, Carafate (talk about constipating drugs), Famotidine, Nexium and Dexilant (can't get my insurance to pay for this one) and Prednisone because he's trying to get a rather irritating heart condition under control and surgery right now isn't an option. Add another handful of meds for the heart problems which all constipate me. Kind of a toss up as to which is going to blow first - gut or heart. I'm 62 now and its come to a quality of life choice. Right now with this darn thing trying to gnaw its way out of my gut (think the movie Alien), I'd hock a kidney for something that gave me relief from the pain long enough to get things in order. KWIM?

Pardon typos - bad cataracts and the kitten is helping me typo. Plus this is a wickedly intense flare - up and I've been holding on by my fingernails till they bleed.


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## Jessica

@heirloomveggies
Aww.. Well, the pain meds I have can constipate me if I take any.  Are the constipating drugs helping your flare at all?  Will your internist prescribe you any pain meds?  My GI has no problem sending one out to me for Tylenol 3 or Loratab 10.  Also, would the pain meds be smart for your heart?  That's an area I'm only starting to learn about.


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## heirloomveggies

I'm on Carafate, too, which is constipating the dickens out of me, or not out of me..hm..Dr says nothing stronger than 50 mg tramadol 4 times a day because of really low bp/heart rate/heart failure, mvp and whatever else they can't fix. Then if I go to the ER or another doctor, I usually get the "Well, your pulse is only 72 (usually in the low 40's) and your bp is just a little elevated, so you can't be in much pain." Ha ha...right. Mu=y usual bp is lin the "have we got the cart handy" range. 

After reading so much here on the lists, I'm having to re-evaluate my stand on not going to the pain managment docs. I don't want to, but anesthesiologists they should be accustomed to medicating people with low vitals. There has to be something better than a handful of tylenol, asacol and tramadol for pain management for us - please say there is. I'm no way ready to check out of life but thinking of another 20 or 30 years of this degree of pain is more of a challenge than I'd opt for.


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## Jessica

@heirloomveggies
What do you have to do to get your heart better?  I'd try to focus on that, I guess.  I've only recently had heart problems lately due to my Grave's, but it seems in the opposite direction of you.  My resting heart rate was 80-90 for a little while.  But if one doctor says no to better meds because of your heart, I wouldn't try to find someone who will say yes if they don't know your entire health history.


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## Plumeria

*Addiction*

I am an alcoholic and pain med addict that has been sober for 11 months now thanks to AA....I also have Crohns Disease which is where the pain meds started (hydrocodone). We pain med. addicts do not want to feel ANY pain...whereas "normal" people accept that pain meds don't take away all pain. Please remember that addiction is a disease of the brain...it isn't a moral issue. I was VERY frightened of pain when I first got clean. However my Crohns has gotten 90% better since I cut out booze and pills. I have had several sugeries since I've been sober.  The first few I got by with Toradol, no problem. The LIFT procedure I need percocets. I had my sponsor hold on to them and dispense then to me, and I stopped taking them after day 3. I also used suboxone to get off the pain meds and are on them again for in between surgeries. It stops pain meds from working in between surgeries as a precaution, and also can help a bit with pain managment. I know it's frightening to think of being in pain with no help, but there is help and I was desperate enough to get clean to take the leap of Faith. I know someone else suggested you take valium for pain but valium has nothing to do with pain other than knocking you out. Plus, those of us that have issues with pain meds (that it can aid those of us in mental pain..for a certain amount of time), really shouldn't be messing with valium or anti-anxiety pills as they are just as addictive. The other good thing about suboxone is it is great at slowing the bowels. I hope this helps. You have helped me tremendously feel not so alone. I don't have anyone in AA to talk to about Crohns and vice versa so this means the world to me!!! God Bless!!
p.s. - Suboxone comes in strip form lessening the chance of abuse. I would go to a substance abuse shrink instead of a pain managment center..they don't seem to give a shit about addiction and getting mentally and spirtually better. I have not heard very good things about methadone...they potential for abuse is extremely high.


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## SMSIRL

ALL painkillers have risks. Paracetamol/Tylenol are having their labelling changed to new and lower recommended daily doses. Doses must reflect liver function, as they are hepatotoxic and an injured liver is less capable of handling them safely. Long term [1 year] they can cause liver and kidney problems, and can cause liver failure.

Non-Steroidals can cause a list of problems from ulceration, heart attack, to CVA.

The real issue with pain killers, as with all meds, is finding an optimum approach that maximise quality of life.

I have seen people, out of pure stupidity, watch their "loved ones" in unnecessary severe pain, because they didn't "believe in painkillers". The issue must always be minimising both pain and harm - which is often a trade-off between both. But it must be for the individual to decide what trade-off they can live with. For some addiction will be the greatest harm, while for others incapacity due to unremitting pain may cause them to be suicidal. The idea that there is one answer to the question is to simplify people, who in reality, tend to be quite variable in nature - having quite different needs and personality traits.

For my part I get uncontrollable severe pain from acute pancreatitis. I cannot do anything when it happens. I'd be happy to have an effective pain med.


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## heirloomveggies

Amen. I was hospitalized for a month with acute pancreatitis and they kept me nicely medicated but once I was sent home everything changed. I cannot imagine you going through acute pancreatitis outside of a hospital with lots of good meds. Thatis just horrible.

I've been in a Crohn's flare for 4 months now and the pain cranks up to a solid 10 every day but my Internist won't do any pain killers other than Tramadol 50 MG tid. The gastro people won't give anything other than lots of things for acid reflux, Carafate and Asacol. The pain management doc won't give me anything for pain at all because he doesn't want me to have paralytic ileus. 

Heck, it is 2 weeks plus before I have a BM, I think the ileus mess is already upon me, despite the handful of stool softeners/laxatives I take (doctor's order) daily.

I think they are so scared of the government's watchdogs that they just won't help us with pain. One doctor told me I would have to  "just tough it out."

I wanted to kick him in the well you know wheres.


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## heirloomveggies

Jessica said:


> @heirloomveggies
> What do you have to do to get your heart better?  I'd try to focus on that, I guess.  I've only recently had heart problems lately due to my Grave's, but it seems in the opposite direction of you.  My resting heart rate was 80-90 for a little while.  But if one doctor says no to better meds because of your heart, I wouldn't try to find someone who will say yes if they don't know your entire health history.


I'm taking Imdur at the max dose (extended release nitroglycerin), Ranexaa(also max dose) and have nitro tablets for angina. The cardiologist said there is nothing they can do surgically because the blockages are all in micro vessles and it is calcium that is causing the blockage. He actually told me to go pff all the angina drugs and let nature take its course. Within 12 hours I was gasping for breath, the pain in the chest, arm and jaw was so bad I was seriously considering calling 911, so I took the heart meds and it eased off. I'm a wimp I guess. My internist, whom I saw later, was less than amused at what the cardio said and told me to stay on the heart meds. 

Locally both the hospitals, cardiology and gastro are sewed up tight by one hospital, one cardiology practice and one gastro practice. As a disposable person, it is pretty impossible to get decent medical care. Of course that is just my opinion!


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## Plumeria

Wow, my newbie post was just asking if there was anyone else out there that had Crohns DISEASE and the DISEASE of addiction...never said anything about anyone else taking narcotics, including stating any judgements for taking them...it was simply a personal choice I had to make. I am not someone who thinks Docs should not prescribe narcotics at all...they just shouldn't presribe them to me..ha ha.


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## Dixiedoll23

I started seeing my pain management doctor before I was diagnosed w/ crohns.I didn't know what was wrong with me.Only knew that I hurt all the time.I have to give him credit for sending me to all the right places.I wasn't diagnosed with anything at all when I first started seeing him.After seeing specialists, I was diagnosed with arthritis in my spine and hands (my knees I'm sure too, just not dxed yet) Fibromyalgia, a severe prolapsed bladder, severe vitamin deficiencies like calcium and vitamin D.I don't know.Seems like I have a huge list of medical problems now.
He started me on a very low dose of oxycodone.Then I switched to a low dose of Fentanyl.After my crohns surgery (12 inches removed!!) I was up to 15 mg of oxycodone 6 times a day and a 100 mcg Fent patch every 48 hours!!
Like others my tolerance to pain medication was through the roof.I'd freak out if I ran out too early, or couldn't get my refill on time.After a couple of years I had enough.I stopped seeing my pain doctor and started seeing another that I told I didn't want to be on that stuff anymore, but needed something.
I was RXed tramadol (max dose of 8 day) and feel so much better just being on these.
Just a warning to anyone on tramaol.They are suppose to be non-addicting.This isn't true.They are addicitive just like any other pain med.Tramadol has serotonin in them, so you must wean yourself down and do not stop cold turkey.
I found this out the hard way. 
Good luck to all those in pain.


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## smithjojo

wow its really impressive information.....
thanks!!!


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## ahng

What works for me is Dilaudid for break thru pain and Fentanyl patches for every day pain because of the vomiting and the diarrhea I have on a daily basis. I have endometriosis as well as fibromyalgia and a back problem-- scoliosis.

I started taking pain meds about 5 years ago and I was off everything due to several surgeries not related to my bowels, still wondering if Humira had anything to with me getting so many infections in my body. I hate the pain meds because I always need them and my insurance is very flaky, I have medicaid. I have been to a few pain doctors but one stopped the clinic in my area and recently the other privitized and doesn't take my insurance so I had to ween myself off of them. I can't believe how normal I am with them. I go to the bathroom about 5 times a day, not 20. I don't have much blood any more, thanks to Humira I am sure of that, and I can eat without hurting immediately when I put the food into my stomach. I can also eat about two times a day as well. Pain meds have helped me but I find myself pretty dependent on them, like I was with prednisone. Sorry for venting but I haven't had SOO many people who have had to deal with the similar things I have been going throughout my life. It's really nice to know people are here!


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## allieinwonder

I honestly believe this problem will always be around...

I have been on pain meds since my issues started in June of 2011. Different doctors have given me different things, and I have pretty much had it all (hydrocodone, oxycodone, morphine, diluadid, etc). Once I was seeing a specialist I was put on tramadol, and have been on it since (this was September of 2010). I have been in a really bad flare since August of 2011, and I have had to take tram every day since, which I absolutely hate. But if I don't take it, I pass out from the pain, or am so out of it from the pain I can barely talk or move. My husband is the one who gives me the pain meds when it is that bad, and he is not afraid to give it to me. My doctors are also very strict on giving it to me...I told them I didn't want them at one point and they upped my prescription and told me I was taking them whether I wanted to or not because I desperately needed them (my pain effects my blood pressure and they don't like it). I am given 90 50mg tramadol at this point a month, about 3 a day. When I am on a high amount of pred I don't need them, and I stopped cold turkey at one point, and I had the worse withdrawal symptoms!

I believe we have the right to take pain meds. My body is dependent, yes, but I am not mentally addicted. And when my flare gets better, I will slowly get my body off the pain meds. The pain meds are the only reason I am able to have any kind of quality of life.


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## Plumeria

What great posts this subject has been getting!! 

When I first posted this, I just wanted to see if there were any other people with Crohns that were also sober pain med addicts (only or and) alcoholics on here and if so, what they did for pain. I also believe people have a right to take narcotics...it's a personal choice of mine to take them as a very very very very last resort. As I have the disease (and it is a disease) of addiction, I cannot take narcotics safely. How I knew I became addicted to narcotics (in hind sight) is I was not doing or trying anything else for pain management. I had been told to use heating pads, take sids baths, watch what I consumed, try non narcotics, etc. and I didnt...I wanted the quick fix. Again, I'm talking about my story, not telling others what to do. I was also lying to myself and others about what my pain level really was.
     The crazy thing was, once I stopped drinking and taking pills, my Crohns got 90% better. I still have pain at times, sometimes every other day, but it's intermittent. I had a LIFT procedure for a fistula several months ago. I did need narcotics but I had someone from AA hold on to them for me, I had the ability to be honest with myself, and I was off them on the 3rd day. 
     Again, I am NOT saying people shouldn't take narcotics, I am just sharing MY story. I'm seeing my GI doc today to see what else I can do on my personal quest for a for-the-most-part pain free life. I'm also going to ask her and my shrinkie-poo what they think about me taking Tramadol until I can find the right med. mix. TTFN!


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## Paladin

GNC Crohn's Man said:


> Unless your in "real pain" they give you Toradol now... It is a strong NSAID and not addicitive... It is not safe for long term use though....


Careful, as a nsaid toredol is linked as causative to crohns and gastro bleeding and discomfort are prime contra indica's.

nsaid use has been linked as a cause of crohn's, asparin specific.

Fentynyl patches have been shown effective, very effective in decreasing motility and rounding cramps and pains.


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## Plumeria

I appreciate the post. I rarely take the torodol. As for fentanol patches...I'm a pain med addict, so I would never take it. Just a friendly note on the subject...be VERY careful using those things. I'm very surprised they are even prescribed for crohns. If pain is bad enough that one has to take fentonol patches...I would seriously be looking for a second opinion!!!

Be well..inside and out.


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## Paladin

I am in Ontario Canada, we are allowed as many opinions as needed, i have
been chugging demerols, oxys, have stopped Tyl#3 and now just used the
straight morphine components direct.

My very competent docs have no problem loading up my narcotics list to the breacking point.   Pharamas get pissed at the hug amounts and degree of risk for abuse.

I do not have the abusive/compulsive addiction personality by grace of G_d.
I drink once a year as the bible commands Jews to drink till blotto on the
festivale of Purim, our Halloween.

I am eating about 8 percs a day, more when pain is bad, on 75 to 100
mcg Fentynyl Patches  and use vicodan or demeral for breaking pains.
In addition to that, i have the highest quality gov't pot and allowed to keep
up to 8Kg of bud for storage use.

Canada has a different attitude for pain meds.   We should not be punishing patience because some unbalanced people may abuse.

Gotta admit, high drug use slows bowel motility, its designed for crhons.


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## Jenny06xx

Wow that's a lot of strong pain meds an I thought mine was over the top lol 

One thing I want to know is how the hell do we ever get off these meds without ending up in full withdrawal !

I'm not ready to drop my dihydrocodeine at all yet due to still being in pain but when the time comes I'm dreading it ! 
Ive done it before cold turkey off 8x60mg codeine per day to see how my pain levels really were without them and ended up in hospital 3 times an shoved back on them after 
4 weeks clear. gutting lol

That was 2 years ago an then I've gone to tramadol to dihydrocodeine at  high doses , I can't wait for the day I don't need them any more but also dread it b coz of the withdrawal !


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## ekay03

I am also on a long list of drugs and take four 10 mg hydrocodone a day for my pain. I am also a little worried about the day I need to come off of these drugs. I am not so worried about coming off the hydrocodone. My dose is relatively low, but I am worried about the other drugs such as Cymbalta, Buspar and Sertraline.  I am wanting to quit the Sertraline. I am concerned about all the serotonin. It is not causing any problems but it still worries me. I have heard horror stories about coming off these kinds of drugs. So my question is has anybody had any experience quitting these kinds of drugs. I have not brought it up to my doctor yet, but I plan to in march when I see my doc again,


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## Paladin

Jenny06xx said:


> Wow that's a lot of strong pain meds an I thought mine was over the top lol
> 
> One thing I want to know is how the hell do we ever get off these meds without ending up in full withdrawal !
> <snipped>
> 
> That was 2 years ago an then I've gone to tramadol to dihydrocodeine at  high doses , I can't wait for the day I don't need them any more but also dread it b coz of the withdrawal !


The american anti drug crusade (and canadian) is like religion . . . they instill an unnatural fear of the unknown, how any use of coke, pot or a recreational or prescribed drug will cause addiction and ultimately death.   Every one that uses a drug is an abuser and convict in waiting, save and except those in congress and running the world.

I have gone off oxy, fentynyl, etc., cold turkey without any ill effects say a day or two of flu like symptoms.   No big deal.    I purposely go clean for a 2 to 3 month period to allow my tolerance to lower and to build up reserves of scripted stuff (keep filling the scripts).

Look at that horrible gateway drug, pot, kills none yearly, has been used by 85% of politicians and cops.   When made illegal in 1932 the only group that opposed the law change was the AMA as tincture of marijuana was used in no fewer than 230 patent compounds.   The geniuses replaced the THC with opiates.


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## KWalker

Paladin said:


> The american anti drug crusade (and canadian) is like religion . . . they instill an unnatural fear of the unknown, how any use of coke, pot or a recreational or prescribed drug will cause addiction and ultimately death.


Actually, drugs such as Coke and Ecstasy can be lethal after just one use. It's scientifically proven. Not saying it will in all cases, but it's not uncommon. Marijuana, as much as I disagree with every aspect of it, is not possible to overdose on it. You would fall asleep before you could smoke enough of it to do anything. Drugs like morphine, Oxy's, etc can just as well cause addictions and even death depending on dosages.  Random fact...Even OTC herbs can cause harm if misused and mixed with certain others. 

The biggest thing about recreational drugs is that there really is no telling what is truely in it. Dealers will even "lace" the drugs with more addictive drugs to keep the buyer coming back. And simply people are just stupid now and are first off dumb enough to use, but then also dumb enough to mix. Last year one of the kids I went to school with was at a party and was so messed up he starting drinking methol hydrate (paint thinner). Long story short, he passed out and he isn't here today. He never did wake up. 

Prescribed medicine like Morphine and Oxy's can also be highly addictive when they're in the wrong hands, which is why they don't just give them out to everybody, especially not in the hospital. When I had my two surgeries through November-December ('11), they sent me home with Oxy's and I was taking so many of them (usually 6-8 a day) that by the time I got off of them I was depending on them to go to bed. I got this really weird feeling in my one arm and the oxy's made it go away and help me sleep.  Thank god it only lasted a few days and since I didn't have anymore, I could help myself with it.

Everyone is different, and there are many factors to consider when looking at drug use.


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## Hexie

I'm currently on Butrans Pain patches 10mcg per hour - they're basically morphine and I wear the patch for a week at a time,  and I also take 2 500mg Tramadol tablets.  I can have more Tramadol if I need it but I try and stick to the 2 unless the pain is too unbearable.


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## JohnnyRottenAppleseed

I only use medical marijuana now as before is was diagnosed with crohns I overcame an opiate addiction. I used to take whatever I could get, 200mg morphines, 80mg Oxy Contin and finally Heroin. Yeah, Oxy withdrawal is worse than heroin I've withdrawed from both too many times. Oxy is synthetic. I finally went on methadone for 6 months and never looked back (after methadone withdrawal). I have 3 bottles of viocodin sitting unused and tramadols. I use marijuana now and hope I never have to experience opiate withdrawal ever again.


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## Paladin

KWalker said:


> The biggest thing about recreational drugs is that there really is no telling what is truely in it. Dealers will even "lace" the drugs with more addictive drugs to keep the buyer coming back. And simply people are just stupid now and are first off dumb enough to use, but then also dumb enough to mix. Last year one of the kids I went to school with was at a party and was so messed up he starting drinking methol hydrate (paint thinner). Long story short, he passed out and he isn't here today. He never did wake up.
> .


Pure fantasy.   give links and examples.

What dealer is going to give you an inclusive expensive drug to hook you to
an inexpensive drug?   If this is or was the case, why are doctors like
Ron Paul pro pot legalization and decrim of all drugs?

The american drug paranoia machine is working overtime and reaching for straws.

"only Users Lose Drugs".


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## JohnnyRottenAppleseed

Agreed pure myth. They do cut drugs with fillers but not other drugs to get "kids" hooked. Govt propaganda. The kid who drank the paint thinner should have had more sense. Life would have done someone like that sooner or later. I have friends who died from OxyContin addiction. I don't think we should ban it outright although I do believe it is overused and the manufacturer used to make it with a coating that was waaaaaaaaaaay to easy to scrape off and shoot or sniff.

PS I've never heard of anyone dying their first time on coke or E. in fact I think deaths from those drugs are rarer than aspirin deaths. Vioxx killed 35,000 innocent people.


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## maria

MY Dr WONT give me NOTHING!! NOthing! I don't know why. I'm in pain all the time! I bleed about a CUP OF BLOOD THROUGH MY RECTUM about every 7 - 10 hours (it;s actually slowing now) Also I had a biopsy done  and endoscopy and it showed severe inflammation that has been here for the last yr. ANd still my dr wont give me anything. I'm in pain all the time and still nothing.. Why wont they give me anything?? This really makes me mad.


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## maria

JohnnyO said:


> I only use medical marijuana now as before is was diagnosed with crohns I overcame an opiate addiction. I used to take whatever I could get, 200mg morphines, 80mg Oxy Contin and finally Heroin. Yeah, Oxy withdrawal is worse than heroin I've withdrawed from both too many times. Oxy is synthetic. I finally went on methadone for 6 months and never looked back (after methadone withdrawal). I have 3 bottles of viocodin sitting unused and tramadols. I use marijuana now and hope I never have to experience opiate withdrawal ever again.


I can use those! :blush:


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## JohnnyRottenAppleseed

Do u have a gastroenterologist or family doc? Ask ur primary care doc and if they don't give u anything ask for a pain management referral. Redundancy, I know, but some doctors are fearful of the DEA that controls these substances.  I feel for u as I was bleeding as much oct 2010. Get the inflammation under control via meds then find natural way to figh inflammation. Cannabis is great for pain and available in Washington.


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## ekay03

maria said:


> MY Dr WONT give me NOTHING!! NOthing! I don't know why. I'm in pain all the time! I bleed about a CUP OF BLOOD THROUGH MY RECTUM about every 7 - 10 hours (it;s actually slowing now) Also I had a biopsy done  and endoscopy and it showed severe inflammation that has been here for the last yr. ANd still my dr wont give me anything. I'm in pain all the time and still nothing.. Why wont they give me anything?? This really makes me mad.


Gi docs never want to dx pain meds.  better off asking a GP


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## maria

JohnnyO said:


> Do u have a gastroenterologist or family doc? Ask ur primary care doc and if they don't give u anything ask for a pain management referral. Redundancy, I know, but some doctors are fearful of the DEA that controls these substances.  I feel for u as I was bleeding as much oct 2010. Get the inflammation under control via meds then find natural way to figh inflammation. Cannabis is great for pain and available in Washington.


I have both. My family doctor acts as if hes afraid he's gonna hurt me and always tell me to ask my gi and my gi says pain medication wont do anything for me..He tells me to just wait for my reversal but THey told me they were gonna do that 8 months ago?? I've tried cannabis and it doesnt do anything for me I wish!
Sometimes its to the point where I just want to lay there and not move becuase It's all i think about..My drs dont seem to care much. I awlays tell myself it's just in my head and if the drs arent concerned than I shouldnt be but?? I'm getting tired of it.


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## JohnnyRottenAppleseed

Does your primary care doc suck? If so, get a new one and shop around till u find one u like and will take good care of you. It's unconciounable what both doctors said. In fact I'd look for a new GI doc as well. Ask them today to please help treat your terrible pain. Tell them you are bleeding out the ass and in terrible pain. If they don't immediately say "what pharmacy are u with and what is their number" tell them that you are going to find a doctor who is compassionate enough to not let you needlessly suffer.


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## maria

JohnnyO said:


> Does your primary care doc suck? If so, get a new one and shop around till u find one u like and will take good care of you. It's unconciounable what both doctors said. In fact I'd look for a new GI doc as well. Ask them today to please help treat your terrible pain. Tell them you are bleeding out the ass and in terrible pain. If they don't immediately say "what pharmacy are u with and what is their number" tell them that you are going to find a doctor who is compassionate enough to not let you needlessly suffer.


Oh I tell them.. Ive even went to their clinic and sat an the toilet and had all the blood come out and showed him.. He was like wow thats a lot of blood.. I was like yeah you think?? I bleed this all the time and it hurts. Please help me.. Ive cried and everything.. He's the only GI my insurance will cover.


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## JohnnyRottenAppleseed

What insurance co? Tell them he isn't treating ur severe pain. Get a new primary care doc.


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## maria

JohnnyO said:


> What insurance co? Tell them he isn't treating ur severe pain. Get a new primary care doc.


I just called him and left him a message. I have state medicaid. I've even sent a letter to the congresswoman she sent me a letter and said she would help and asked for all my information that she would talk to him. But that was 3 weeks ago.


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## chrisnsteph1022

My GI has no problem prescribing me oxycodone/percocet. I'm paranoid of getting addicted, so I put up with way more pain than I probably should. I limit myself to 5mg/day of percocet or 10mg/day hydrocodone. One script lasts me many months, so that's probably why he doesn't mind writing it. Since starting Remicade 10 days ago, I haven't taken a pain pill in 8 days (I was taking them daily for months).


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## Plumeria

I was prescribed narcotics for several years for Crohns. The physical pain was awful. But it was NOTHING compared to the mental hell I went through when I became addicted. Yes Doctors are cracking down on giving these drugs out so freely. They are becominng more aware of the indications that someone is abusing these drugs. Since I've been clean, I have found many other ways to manage pain. I had surgery for a fistula this past year and I did need pain meds. I had someone I don't live with them dispense them to me and after the third day, I switched to heating pads, sids baths, and torodal. 
     I know how frustrating it is to have that kind of pain and have others concerned more about addiction. Again, opiate addiction is pure HELL. Addicts don't think they should have any amount of pain, but the truth is those that are not addicted can accept they are going to have a certain amount. 
     Have an honest talk with your doctor...ask him why he won't prescribe them. If he is more concerned about his license than you, find someone else that is willing to communicate with you and work on finding the right medications to control the Crohns so you are not experiencing pain and bleeding. But be honest with yourself too. If you are more concerned about getting narcotics than you are about finding the right Crohns meds to take care of ulcers and inflammation that are causing the pain, you may be heading down a road I wouldn't wish on my worst enemy. You could also try a pain clinic. I hope this helps. Oh, and if anyone is worried about withdrawing from narcs, try Suboxone strips...they are much safer than methadone. Take good care!


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## ekay03

Plumeria said:


> I was prescribed narcotics for several years for Crohns. The physical pain was awful. But it was NOTHING compared to the mental hell I went through when I became addicted. Yes Doctors are cracking down on giving these drugs out so freely. They are becominng more aware of the indications that someone is abusing these drugs. Since I've been clean, I have found many other ways to manage pain. I had surgery for a fistula this past year and I did need pain meds. I had someone I don't live with them dispense them to me and after the third day, I switched to heating pads, sids baths, and torodal.
> I know how frustrating it is to have that kind of pain and have others concerned more about addiction. Again, opiate addiction is pure HELL. Addicts don't think they should have any amount of pain, but the truth is those that are not addicted can accept they are going to have a certain amount.
> Have an honest talk with your doctor...ask him why he won't prescribe them. If he is more concerned about his license than you, find someone else that is willing to communicate with you and work on finding the right medications to control the Crohns so you are not experiencing pain and bleeding. But be honest with yourself too. If you are more concerned about getting narcotics than you are about finding the right Crohns meds to take care of ulcers and inflammation that are causing the pain, you may be heading down a road I wouldn't wish on my worst enemy. You could also try a pain clinic. I hope this helps. Oh, and if anyone is worried about withdrawing from narcs, try Suboxone strips...they are much safer than methadone. Take good care!



Hi Plumeria Thanks for sharing your story.  Since I do take narcotics daily, and my mother died of a drug overdose when I was 12, addiction it is always in my mind.  You are right!  I don't like ANY pain!  But I do know that is not possible.  I am currently taking 3 10mg hydrocodone a day. Last month it was 4.   Plumeria, I would like to ask you a question.  You said you were addicted to the pain meds. How much were you taking?  I never get my meds early and I only take the hydrocodone. Im not getting them from anywhere else. Like I said I do worry!  One time there was a mess up at the pharmacy and they didnt get my pain pills  script on a friday, so I was out till monday and tho I was worried I would suffer, the only thing that happend is I was forced to take advil for the weekend.  A friend told me that wasnt enough time to withdraw so I dont know.  I dont think I have a problem, but that is what someone w/ a problem would say.  One thing is for sure. If you dont take narcotics you dont have to worry about getting addicted to them!


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## JohnnyRottenAppleseed

Opiate withdrawal sets in noticeably at 12 hours depending on the opiate as different opiates have different half lives. You are in a good place if you didn't notice anything it's when you become very conscious of the withdrawal and relief that you should be concerned. I've withdrawn from 200mg morphines and although awful, it won't kill you. You will wish you are dead though.


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## maria

ekay03 said:


> Hi Plumeria Thanks for sharing your story.  Since I do take narcotics daily, and my mother died of a drug overdose when I was 12, addiction it is always in my mind.  You are right!  I don't like ANY pain!  But I do know that is not possible.  I am currently taking 3 10mg hydrocodone a day. Last month it was 4.   Plumeria, I would like to ask you a question.  You said you were addicted to the pain meds. How much were you taking?  I never get my meds early and I only take the hydrocodone. Im not getting them from anywhere else. Like I said I do worry!  One time there was a mess up at the pharmacy and they didnt get my pain pills  script on a friday, so I was out till monday and tho I was worried I would suffer, the only thing that happend is I was forced to take advil for the weekend.  A friend told me that wasnt enough time to withdraw so I dont know.  I dont think I have a problem, but that is what someone w/ a problem would say.  One thing is for sure. If you dont take narcotics you dont have to worry about getting addicted to them!


Was it a from medication that she overdosed on? I'm sorry.


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## ekay03

maria said:


> Was it a from medication that she overdosed on? I'm sorry.


Thank you, ya, was a combination of several kinds of pills. She was a drug addict and went to rehab a few times and it just never stuck.  I lived with it so I remember what it looks like to see a drug addict and every time I take a pain pill I remember just what I dont want to happen to me.


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## maria

See thats why I feel so weird asking for pain relief. A lot of my family members are addicted to it but I seriously am in pain but it's like I feel like I need to explain myself and ONly to myself that it's ok because I'm only human and if I don't abuse it it's ok.


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## scott 4216

*Fistulas and abcesses*

What recommendations does anyone have to deal with the pain?  I currently take hydrocodeine which works great but I do not want to get addicted.  Also having trouble sleeping any advice?


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## maria

scott 4216 said:


> What recommendations does anyone have to deal with the pain?  I currently take hydrocodeine which works great but I do not want to get addicted.  Also having trouble sleeping any advice?


 well I just asked for tramadol hopefully that works. ambien really helps with sleep.


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## ekay03

maria, how long have you had ibd. I ask b/c it took me 15 years to find a doctor that was willing to "pain medicate Crohns." But it isn't like I was actively looking either. Honestly until I joined this forum I didnt know that other people w/ crohns got pain meds.  Doctors led me to believe that people w/ crohns don't take pain meds unless they are in the hospital.  Maria I think you should speak to your doctor again. Did you say you have a gp? That is the one that is most likely to rx meds for pain. Have you heard of tramodol? I might have spelled the wrong. Anyway it is a mild narcotic w/ the least potential for abuse.  Tell the doctor that you belong to an online ibd forum and somebody suggested it.  That is what I did and it worked


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## ekay03

maria said:


> well I just asked for tramadol hopefully that works. ambien really helps with sleep.


I did not see this. Ok then you already know


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## KWalker

JohnnyO and Paladin. I have an education backing me up on this, not stuff you read on google.  Who said dealers have to use expensive drugs to hide in their marijuana? And who said its just marijuana they "lace".  I knew kids that would store MDMA in Ziploc bags with a powder (I'm not sure what), and take it.  


The biggest problem is that people are in denial. Nobody wants to believe there could be more. I have no doubt in my mind there are "dealers" out there who are straight with the "customer" but it isn't rare for marijuana dealers to be found dealing heavier drugs as well, and it also isn't rare for people who smoke pot to try heavier drugs at some point. (And I'm not including C.F. Users in that category).   

Its common sense just to think about it. Two dealers are selling joints for the same price, there's going to be the dealers that "go the extra mile" to get you to come back.  It sounds stupid, I know. But its true. 

As far as people dying off one hit of certain drugs, no its not extremely common, but its also not rare. There are a lot of different factors to consider. Environment, heart rate, the potential for mixed drugs (drinking/smoking weed, weed/heroin, etc) just to give examples. This makes sense if you understand drug interactions (additive, hyper-additive, antagonstic).      Again not extremely common but there are people who can do psychoactive drugs every single day in their house, then go out into a different environment and do the exact same "dose" and the impact CAN be drastically different.  There's too much science involved to explain it fully on here but like I said above, heart rate, blood pressure, etc make a huge difference. Although you think you're fully relaxed your body thinks differently.   They always tell people if they're going to do these drugs (including alcohol;it is a drug) to do it in the same environment.  

The textbook we use is called "Drugs and Behavior in Society".   In case you're wondering, I'm not talking about high school either...

The reason I edited this also because I thought it would be important to clarify that I cannot give accurate statistics and what not about other countries because we (for the most part) only focus on Canada related instances and I am aware stats vary.


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## ekay03

scott 4216 said:


> What recommendations does anyone have to deal with the pain?  I currently take hydrocodeine which works great but I do not want to get addicted.  Also having trouble sleeping any advice?


He Scott and welcome,  I dont want to get addicted either I found this info http://www.healthcentral.com/chronic-pain/coping-279488-5.html

about the sleep, I use benadryl. It puts me to sleep and helps w/ allergies!


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## JohnnyRottenAppleseed

I know a dude who was on Oxy for crohns and I have never been given anything stronger than tramadol and I was screaming bloody murder. I'm kind of glad though having gone through Oxy withdrawal so many times. Also, although everyone varies the intestines aren't super inervated so the pain isn't as severe as if it was some other part of the body.


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## maria

hahaha yes!! I told him this today.. I called him and was like I just joined a crohns group online and people in there said their gi doctor gave them tramadol and I need to try something I dont care anymore.. He was like well I doubt it will help you but I'll send it to the pharmacy and he did. So far so good. I have to say I have relief! Finally..I'm just mad he didn't think of this 8 months ago.. Hopefully it keeps on working..Also I asked for the antidepressants and he said that it only helps people with joint pains and stuff like that and said it def wouldnt help me.


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## JohnnyRottenAppleseed

maria said:


> hahaha yes!! I told him this today.. I called him and was like I just joined a crohns group online and people in there said their gi doctor gave them tramadol and I need to try something I dont care anymore.. He was like well I doubt it will help you but I'll send it to the pharmacy and he did. So far so good. I have to say I have relief! Finally..I'm just mad he didn't think of this 8 months ago.. Hopefully it keeps on working..Also I asked for the antidepressants and he said that it only helps people with joint pains and stuff like that and said it def wouldnt help me.


He's a retard for thinking pain meds wouldn't ease your pain. There wouldn't be an entire class of drugs dedicated to pain as well as pain management centers and the branch of anasthesiology. Glad u finally got some pain relief


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## JohnnyRottenAppleseed

KWalker said:


> JohnnyO and Paladin. I have an education backing me up on this, not stuff you read on google.  Who said dealers have to use expensive drugs to hide in their marijuana? And who said its just marijuana they "lace".  I knew kids that would store MDMA in Ziploc bags with a powder (I'm not sure what), and take it.
> 
> 
> The biggest problem is that people are in denial. Nobody wants to believe there could be more. I have no doubt in my mind there are "dealers" out there who are straight with the "customer" but it isn't rare for marijuana dealers to be found dealing heavier drugs as well, and it also isn't rare for people who smoke pot to try heavier drugs at some point. (And I'm not including C.F. Users in that category).
> Your entire post is riddled with cliches like "the marijuana gateway theory" , "laced marijuana", and "isn't rare" "it's not uncommon".
> 
> Its common sense just to think about it. Two dealers are selling joints for the same price, there's going to be the dealers that "go the extra mile" to get you to come back.  It sounds stupid, I know. But its true.
> 
> As far as people dying off one hit of certain drugs, no its not extremely common, but its also not rare. There are a lot of different factors to consider. Environment, heart rate, the potential for mixed drugs (drinking/smoking weed, weed/heroin, etc) just to give examples. This makes sense if you understand drug interactions (additive, hyper-additive, antagonstic).      Again not extremely common but there are people who can do psychoactive drugs every single day in their house, then go out into a different environment and do the exact same "dose" and the impact CAN be drastically different.  There's too much science involved to explain it fully on here but like I said above, heart rate, blood pressure, etc make a huge difference. Although you think you're fully relaxed your body thinks differently.   They always tell people if they're going to do these drugs (including alcohol;it is a drug) to do it in the same environment.
> 
> The textbook we use is called "Drugs and Behavior in Society".   In case you're wondering, I'm not talking about high school either...
> 
> The reason I edited this also because I thought it would be important to clarify that I cannot give accurate statistics and what not about other countries because we (for the most part) only focus on Canada related instances and I am aware stats vary.


Well I have 5 masters degrees and a phd 20 years experience in the real world not out of a book. Most "pot dealers" don't sell other drugs. All drugs are not the same. I've never come across laced cannabis and neither has anyone I know and I have known and know a lot of regular cannabis users. Also your textbook was written by the government that is profiting from a drug war. Hardly fair and balanced information.  
Also, there is a huge industry profiting from drug treatment centers and programs with disastrous success rates. I'm not profiting off any information I share. It's all based on 20+ years of real world experience in drugs and my friends experiences with drugs and treatment programs and overcoming addiction.
Your posts are classic 20th century textbook theories that are loosely based on reality aka the real world on the street.


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## allieinwonder

Maria, I'm so sorry you are going through that. I agree with others, get a new family doctor. I have been on pain meds since my disease started June of 2010, and I can't imagine what it would be like without those meds. I am on a pain med that is specifically for chronic pain called Tramadol (like Ekay said lol). Maybe your doctor would be more willing to give you that than percocet or hydrocodone? I have been on it for over a year and it works well for me. It can be just as addictive (I have read some pretty nasty stories online), but it is a synthetic opiate, so it works a little better for chronic pain. I have had some doctors that give me tons of tramadol, then others that give me the minimum amount, but I have never had trouble getting at least some tramadol to make my quality of life a little better. Don't give up!


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## maria

Sometimes I wonder if I even trust his judgement.. My dad was shocked too. I had my dr on speaker when he tells me this.. I wonder how his other patience deal with him. I feel like everyday is a battle within my body just to function and for him just to let me go without helping me really hurts my feelings. Reading all this def gave me confidence today when I spoke to him. I'm just tired of him putting me off. I'm gonna start putting my foot down and go higher than him soon. Thank you allinwonder you guys have no idea how good it feels to know someone truly understands what I'm going through. Today when I got the pain medication I swear I almost cried finally even just to cut the pain in half would please me.. I could function and I actually played barbies with my daughter and hugged and kissed her. Tonight was a good night  So far I have taken 2 and I'm feeling pretty good.


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## handle

I'm glad you're getting some relief at last Maria. Your doctor is backward. The body does not heal whilst in extreme pain, so pain relief is extremely important. Crohns pain can become chronic. It is usually recommended to keep ahead of the pain.


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## KWalker

Wow that's impressive. 5 masters degrees, a PhD AND 20 years of experience? 
 Here, the most you can do is a douible major so by that it would mean you've spent 18 years PLUS another 4 years to get a PhD. Oh, and if you're any sort of medical doctor that's even more because of medical school. Assuming you went to school immediately after high school you would probably be 18 years old.  Adding 20 years of experience (assuming you're talking about professional experience because using part time work in retail store as a defense is silly) would put you around 60 years old.  

This is just out of pure curiosity but I'd love to hear all about your schooling and what not. How accurate am I with my approximation?   What are your masters and what kind of PhD do you have?  Again, just out of curiosity. I'm interested.

You're not realizing that although "you and your friends have never came across laced drugs" doesn't mean anything. You are such a small fraction of people that do drugs, and I'd be willing to bet you don't even do enough to be considered part of that community. I've never came across laced drugs either, but I don't smoke weed. Doesn't mean it's not out there.


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## ekay03

maria said:


> Also I asked for the antidepressants and he said that it only helps people with joint pains and stuff like that and said it def wouldnt help me.


I do think your doctor is right about this. I have found this to be true. When I was first diagnosed my doctor tried me on Nortriptyline and it actually made my pain worse.  But if at some point joint pain becomes one of your symptoms. You can bring it up again. I am glad that you got the tramadol.  I wish this forum had been around when I was first diagnosed. I am sure it would have saved me years of suffering.


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## allieinwonder

I'm glad you are finally getting help for the pain Maria!


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## Ducey99

Hmm, not sure which of these two completely different conversations I want to join . 

Maria:
Glad you're finally getting help, your GI sounds JUST like mine. "You have Crohn's, here's some Humira." Only recently, after this forum, am I thinking: Okay, but what about my nausea, gas, cramping and numerous Vit and Min deficiencies. It's nice that they're treating the cause, but there is definitely no need to live in agony all the time. I basically had to fight my GI to get me some Iron infusions when I have been anemic for the past 8 months. And apparently my B12 is "fine".. "normal" is above 200, mine is 213 or something and fatigue is my biggest chron's symptom atm. Sometimes it makes you wonder if some of them even care at all..

As for the MJ convo/arguement:
I'm actually just curious as to what exactly it could be "laced" with? It's usually in bud form and you have to break it up and roll it yourself, it's very hands on. Just curious because I recently started using it for my Crohn's symptoms.


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## JohnnyRottenAppleseed

KWalker said:


> Wow that's impressive. 5 masters degrees, a PhD AND 20 years of experience?
> Here, the most you can do is a douible major so by that it would mean you've spent 18 years PLUS another 4 years to get a PhD. Oh, and if you're any sort of medical doctor that's even more because of medical school. Assuming you went to school immediately after high school you would probably be 18 years old.  Adding 20 years of experience (assuming you're talking about professional experience because using part time work in retail store as a defense is silly) would put you around 60 years old.
> 
> This is just out of pure curiosity but I'd love to hear all about your schooling and what not. How accurate am I with my approximation?   What are your masters and what kind of PhD do you have?  Again, just out of curiosity. I'm inteIt wrested.
> 
> You're not realizing that although "you and your friends have never came across laced drugs" doesn't mean anything. You are such a small fraction of people that do drugs, and I'd be willing to bet you don't even do enough to be considered part of that community. I've never came across laced drugs either, but I don't smoke weed. Doesn't mean it's not out there.


it was a joke. I have 20 years experience. This is an opiate addiction thread NOT an Anti-Weed/Cliche/Govt Propaganda thread. Ur post was filled with cliches and no personal or case references eg "more than rarely people die from first hit of
Coke and Extacy". Sorry life isnt a 30 yr old government textbook and your industry has miserable success rate. You need job security. I get it.

PS are you out of college yet? How many drug addicts have you saved? Loved the paint thinner story as if drinking paint thinner has anything to do with weed or this thread about opiate addiction.


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## JohnnyRottenAppleseed

Ducey99 said:


> Hmm, not sure which of these two completely different conversations I want to join .
> 
> Maria:
> Glad you're finally getting help, your GI sounds JUST like mine. "You have Crohn's, here's some Humira." Only recently, after this forum, am I thinking: Okay, but what about my nausea, gas, cramping and numerous Vit and Min deficiencies. It's nice that they're treating the cause, but there is definitely no need to live in agony all the time. I basically had to fight my GI to get me some Iron infusions when I have been anemic for the past 8 months. And apparently my B12 is "fine".. "normal" is above 200, mine is 213 or something and fatigue is my biggest chron's symptom atm. Sometimes it makes you wonder if some of them even care at all..
> 
> As for the MJ convo/arguement:
> I'm actually just curious as to what exactly it could be "laced" with? It's usually in bud form and you have to break it up and roll it yourself, it's very hands on. Just curious because I recently started using it for my Crohn's symptoms.


Laced Cannabis is a Government Propaganda myth from the 1970's. Sure it's possible you could encounter it in your lifetime, but highly unlikely. I'd be more worried about wether the cannabis was free of pesticide residue and flushed properly before harvest if your are concerned. You are more likely to find food at your grocery store laced with salmonella or E Coli than laced herb. The Prohibitionists are ADDICTED to their Prohibition $$$. Ask any expert who doesn't make a living off the prohibition of drugs for a real answer. Aka my UCLA trained Medical Doctor has no problems With my daily cannabis use. I also use common knowledge/sense and make sure my cannabis has no Pesticides and mold, the only "lacing", LOL, I'd be concerned about. FYI UCLA is one of the best Medical treatment facilities in the US if not the world. I also know other Medical Doctors who partake in cannabis. Fact.


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## Plumeria

Ekay03, I can't tell you how much I admire your honesty (with yourself). Those with a family history of alcoholism and addiction are much more in danger of addiction themselves no matter of how much they try and will it away. First off, I am so sorry about your Mom. Let me see if I can answer your questions. First off, I abused the hell out of alcohol before I was diagnosed with Crohns. Of course I was not honest with myself or my doctors about it. I was only ever prescribed hydrocodone 5/500.  After I was diagnosed I was put on bowl rest and started taking imuran, Humira, apriso…those kinds of drugs. They worked well until I started drinking again. I wasn’t taking very much hydrocodone, maybe 8 a day, when I became hooked on them emotionally, though I didn’t realize it at the time. I figured they were being prescribed so I couldn’t be addicted.  The other indicator I was in trouble (in hindsight) was that I wasn’t doing anything to take care of the Crohns so that I didn’t need the pain meds.  At the peak of the addiction, I was taking 15-20 5/500’s a day. I was being told my Docs to try heating pads, sids baths, Tylenol, and I wasn’t…I wanted the instant relief. Also, not at any point was I TRYING to see if only one pill would suffice, or giving myself a chance too gauge what my pain level really was. If it said, take 2 every 4 hours, I did no matter if I really needed them or not. Anyway, what they really meant was take 2 every  4hrs AS NEEDED for pain. When I ran out of scripts, I never bothered trying to get them sooner or tried ER hoping. I had looked into it enough that I knew I would be caught. I would either switch to booze or pot, take them from someone else who had them, or get really sick. My experience with withdrawing is that it started about 12 hours after not having them. But again, I wasn’t listening to my Doc’s instructions on how to ween myself off so I wouldn’t get sick. Towards the end of the abuse, I could only get my hands on 4 to 6 pills a day..enough so I could function. I was also a full blown alcoholic and pain med addict, although I didn’t look like it. I was completely obsessed with pain meds. At first I liked abusing them because they have me energy and they made me feel so such more emotionally better dealing with “life”. I don’t know when I crossed the line into abuse and addiction…everyone is different. But I did…pain meds were all I really thought about: how many I had, when I was getting them again, they were the first thing I thought about in the am… and then I tried killing myself.
	In hindsight, I was always comparing (instead of relating) myself to other people. “oh I’m not that bad..oh, I’m not taking that much, Oh I know myself too well for that to happen. Addiction have nothing to do with how well you know yourself or how badly you don’t want to become an addict. Addiction is a disease of the brain. It can be genetic. Having said that I have a sister who can take pills or drink in safety. We do have different personalities and she does not have chronic depression/anxiety like I do.  I had also convinced myself that the daily diarrhea I had had nothing to do with my partying. However, after 1 week of not drinking and abusing other drugs, the diarrhea stopped. 
I am NOT saying every person who takes pain meds is going to become addicted. I’m not saying that they shouldn’t be prescribed. I know physical pain that makes you throw up. What I just wrote is MY story only, and it’s a story of denial. In my case, it just got to the point the mental pain out weighed the physical. I tried detoxes, therapy, self-knowledge and I could not stop. It wasn’t until I threw myself into a 12 step program that the insanity stopped.  As for dealing with the pain these days, it’s bearable. I make sure to take my meds for Crohns as diligently as I did the pain meds. I watch what I eat, and of course I don’t drink. I got third opinions until I found a Doc to help me find that best mix of Crohns drugs. I have also ACCEPTED that I will have pain…although I now follow a plan where the pain isn’t much at all and it’s not very frequesnt. . I stopped thinking, “It’s not fair I have Crohns and I deserve to take pain meds” and just accepted it. I’ve had to have several surgeries for fistulas and for 2 of them, I was ok with just Torodal, baths, and heat. One of them I did need narcotics. I had someone dispense them to me and stayed honest with myself. After the 3rd day I realized the pain wasn’t enough to warrant pain meds so I stopped. 
For those that do not relate to this post, please disregard. Again, I really hope no one relates to my story at all, I really do, but in the chance that someone did, I hope I wrote something that helps you not have to go through the hell I went through.


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## ekay03

Plumeria, thank you for taking the time to share that / me.   I will continue to closely monitor my own drug use, but lucky for me, I dont drink. My mother drank too. It was part of what killed her. After my dx in 1992 alcohol treated me different than before my dx. I have had a lot of years to try alcohol and... Just makes me sick before I even drink enough to get buzzed. I stopped trying.   I think for now I am ok!


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## Paladin

JohnnyO said:


> Opiate withdrawal sets in noticeably at 12 hours depending on the opiate as different opiates have different half lives. You are in a good place if you didn't notice anything it's when you become very conscious of the withdrawal and relief that you should be concerned. I've withdrawn from 200mg morphines and although awful, it won't kill you. You will wish you are dead though.


B@llsh*t, most never experience opiate with drawl, its a fabrication just like marijuana addiction.   I have never met a drug i didn't love, but never became addicted to any of em.

A nice solution is to grow a conrner of your garden in opium poppies, no, the cops will not notice, they are widespread in any area, if you google backyard opium production you will gather a wealth of info.

yes, a poppy is a poppy.   pooppyseed bagles are opium bagels, the paranoia of the war on drugs has everyone thinking wrongly.


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## Paladin

JohnnyO said:


> Laced Cannabis is a Government Propaganda myth from the 1970's. Sure it's possible you could encounter it in your lifetime, but highly unlikely. I'd be more worried about wether the cannabis was free of pesticide residue and flushed properly before harvest if your are concerned. You are more likely to find food at your grocery store laced with salmonella or E Coli than laced herb. The Prohibitionists are ADDICTED to their Prohibition $$$. Ask any expert who doesn't make a living off the prohibition of drugs for a real answer. Aka my UCLA trained Medical Doctor has no problems With my daily cannabis use. I also use common knowledge/sense and make sure my cannabis has no Pesticides and mold, the only "lacing", LOL, I'd be concerned about. FYI UCLA is one of the best Medical treatment facilities in the US if not the world. I also know other Medical Doctors who partake in cannabis. Fact.


The 'laced marijuana paranoia' of the '80's was because the federal gov't began spraying Paraquat on dope plants in mexico.

Regan admitted it was done to keep 'potheads' on their toes whilst doing
God's work by sending them to any early grave.


----------



## JohnnyRottenAppleseed

Paladin said:


> B@llsh*t, most never experience opiate with drawl, its a fabrication just like marijuana addiction.   I have never met a drug i didn't love, but never became addicted to any of em.
> 
> A nice solution is to grow a conrner of your garden in opium poppies, no, the cops will not notice, they are widespread in any area, if you google backyard opium production you will gather a wealth of info.
> 
> yes, a poppy is a poppy.   pooppyseed bagles are opium bagels, the paranoia of the war on drugs has everyone thinking wrongly.


I am with you regarding the failed war on drugs that fuels drug cartel violence, black market, and feeds law enforcement and questionable "rehabs" addicted to tax payer funds. However, I speak from experience. If one is BOTH psychologically AND physically addicted they will have a harder time stopping opiates. It also depends on if the individual has an addictive personality. Otherwise the symptoms could pass in a few days unnoticed. It also depends on the dosage, potency, and duration of opiate use.
My dad grew up in Europe and his mom would make him opium tea when they had a bad cough. Natures NyQuil and much cheaper. The givt doesn't like that here as they have their huge line of "approved drugs" they want to sell you. Same thing will happen to cannabis I'm afraid. The US givt already has a patent on cannabis.


----------



## imwood

Laced marijuana is an absolute myth, anyone who has smoked for more than ten minutes knows that most marijuana dealers are a completely different segment of the population than the "hard drug" dealers, and want nothing to do with the bigger drugs. We are not talking drugs of the ghetto, where some gold-toofed hard-ass is walking around with a wad of cash (tens and twenties to the outside so it looks like even more than it is, of course!) slinging whatever he can... we are talking about marijuana.

Get a grip and stop spewing propaganda.  Of course, if you focus on the tiny percentage who may do something to their marijuana, you can write a wonderful bogus textbook with skewed facts to scare the elementary school kids, but it doesn't accurately reflect anything. It's almost funny to read.  I have smoked for two years for chronic pain, my younger brother has smoked for ten years for chronic pain, and I've known people my entire life who smoke - including that goodly lawyer, doctor, judge, the restaurant owner, the retired principal, all the "upstanding people" around you (so open your eyes!) and I don't know of a single person who's ever gotten a "bad batch" of something "laced."  A dealer would lose their entire customer base if they did that.  

And I actually was in a relationship for FOUR YEARS with a guy who bought/sold (didn't know until I was months into the relationship, it was my first "real" relationship at 18) - in quantities of quarter pounds, to five pounds, regular weed - and quantities of quarter ounces to quarter pounds, "krip/GM" weed - and not even any of that, over four YEARS, was ever laced with a single thing, by him or by a single person he ever bought from, in dealings along the entire East Coast of the USA. Ever. Ever. Ever? Ever.

Welcome to the 1980's, 1990's, 2000's...


----------



## JohnnyRottenAppleseed

KWalker obviously works for a "drug rehab" and is therefore biased as she needs job security. Those who are addicted to tax payer funds, as their job depends on those funds, cling to antiquated 20th century junk science to justify their job existence. 

Anyways, isn't this an opiate addiction thread? If anyone has any concerns I have personal experience overcoming a heavy opiate addiction and have been opiate free for 8 years save for the maybe once or twice a year single Vicodin dose, codeine cough syrup, or anasthesia for colonoscopy. I did 6 months methadone and them withdrew from that and now years later fine.


----------



## Paladin

KWalker said:


> JohnnyO and Paladin. I have an education backing me up on this, not stuff you read on google.  Who said dealers have to use expensive drugs to hide in their marijuana? And who said its just marijuana they "lace".  I knew kids that would store MDMA in Ziploc bags with a powder (I'm not sure what), and take it.
> 
> Its common sense just to think about it. Two dealers are selling joints for the same price, there's going to be the dealers that "go the extra mile" to get you to come back.  It sounds stupid, I know. But its true.
> 
> As far as people dying off one hit of certain drugs, no its not extremely common, but its also not rare. There are a lot of different factors to consider. Environment, heart rate, the potential for mixed drugs (drinking/smoking weed, weed/heroin, etc) just to give examples. This makes sense if you understand drug interactions (additive, hyper-additive, antagonstic).      Again not extremely common but there are people who can do psychoactive drugs every single day in their house, then go out into a different environment and do the exact same "dose" and the impact CAN be drastically different.  There's too much science involved to explain it fully on here but like I said above, heart rate, blood pressure, etc make a huge difference. Although you think you're fully relaxed your body thinks differently.   They always tell people if they're going to do these drugs (including alcohol;it is a drug) to do it in the same environment.
> 
> The textbook we use is called "Drugs and Behavior in Society".   In case you're wondering, I'm not talking about high school either...
> 
> The reason I edited this also because I thought it would be important to clarify that I cannot give accurate statistics and what not about other countries because we (for the most part) only focus on Canada related instances and I am aware stats vary.


Good luck in your studies.   Let me guess, you're gonna be a brain surgeon?

Number of people that choked to death on ball point pens in 2008 ?  437.
That is just lower than all combined drug deaths.   Simple ASA use accounts for double that number of deaths.

An education used to be a pathway to learn to think and act for oneself and not accept opinions set forth by others as fact.

"Only Users Lose Drugs".


----------



## Paladin

imwood said:


> Get a grip and stop spewing propaganda.  Of course, if you focus on the tiny percentage who may do something to their marijuana, you can write a wonderful bogus textbook with skewed facts to scare the elementary school kids, but it doesn't accurately reflect anything. It's almost funny to read.  I have smoked for two years for chronic pain, my younger brother has smoked for ten years for chronic pain, and I've known people my entire life who smoke - including that goodly lawyer, doctor, judge, the restaurant owner, the retired principal, all the "upstanding people" around you (so open your eyes!) and I don't know of a single person who's ever gotten a "bad batch" of something "laced."  A dealer would lose their entire customer base if they did that.
> 
> And I actually was in a relationship for FOUR YEARS with a guy who bought/sold (didn't know until I was months into the relationship, it was my first "real" relationship at 18) - in quantities of quarter pounds, to five pounds, regular weed - and quantities of quarter ounces to quarter pounds, "krip/GM" weed - and not even any of that, over four YEARS, was ever laced with a single thing, by him or by a single person he ever bought from, in dealings along the entire East Coast of the USA. Ever. Ever. Ever? Ever.
> 
> Welcome to the 1980's, 1990's, 2000's...



Good weed is way too valuable to be corrupted in any way, the slightest introduction of foreign material is noticed while smoking.

FWIW i grow my own, legally, hold a licence and do not sell to anyone.  My pain is not relieved by smoking so i make up a tincture for injection or
a paste for suppositories.  Works great.


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## Ducey99

Johnny, my question was more for KWalker, because I know there is nothing that you could even really do to MJ hahah. I'm not worried at all about my MJ use, or it containing anything i'm not aware of. I'm a Newfy, so my sarcasm can be tough to read sometimes haha.

Paladin:
I've never heard of anyone taking MJ through injection or suppositories. I'm very curious..


Michael


----------



## JohnnyRottenAppleseed

Ducey99 said:


> Johnny, my question was more for KWalker, because I know there is nothing that you could even really do to MJ hahah. I'm not worried at all about my MJ use, or it containing anything i'm not aware of. I'm a Newfy, so my sarcasm can be tough to read sometimes haha.
> 
> Paladin:
> I've never heard of anyone taking MJ through injection or suppositories. I'm very curious..
> 
> 
> Michael


i'm a huge fan of cannabis but would never recommend injecting it!!! too many things can go fatally wrong. you don't want to be the first death from cannabis do you?


----------



## Ducey99

No I completely agree, I'm just curious because I've never heard of anything like it before.
I'll be sticking with smoking, vaping or eating for sure.


----------



## Paladin

?When pot was made illegal back in the 30's, the only objectors to its illegality was the
medicine industry.   Tincture of Indian Hemp or marihuana was used in over 400
medical preparations and salves/supositories.
I am not advocating anyone do anything, specially not listen to an idiot like me.

Do your own research, find your own recipes and facts, grow your mind.

I don't suggest pot for recreational use, as a medicine it has many beneficial properties,
as far as recreational use, don't know, have never used it that way.


----------



## Paladin

Ducey99 said:


> No I completely agree, I'm just curious because I've never heard of anything like it before.
> I'll be sticking with smoking, vaping or eating for sure.


Duce, it sickens me that the atlantic region has the highest cancer rates and
lowest allowances of medical pot permits.  Just not right at all.


----------



## crushingcrohns

spipe said:


> You mean they give you people pain killers?  I have never been given any pain killers except when it is a 9 in pain and go to the hospital.  I usually have to take a stool softener, a gas reliever, steroids, and make myself vomit to relieve the pain to a level of sanity.  If you get a chance check out my other posts I have figured out it is all about the speed of your bowls.  I have tried every medication out there every treatment and have dropped them all I am med free.  I found if a doctor doesnt know I do know my body better then they do and messed around and found my cure took me years but I have a full life besides an every now and then mistake of eating steak lol.


Good for you!!!!  That's amazing you were able to figure out ( probably from trial and error) what helps you and what causes you to flare.  
You are right when you speak about the speed of your digestive movement and even although you experienced pain with no relief of a pain killer, opiates are really bad for the stomach and intestines.  I know from experience.
It's different for ever person.  Me for instance, experience severe diarrhea.  So quick that my doctor's cannot prescribe anything that is in capsule form.  Tablets only because they are metabolized quicker.  The capsules would go straight through me, not even dissolving for me to reap the benefits of them.  
Anyway, my point here is that more people with Crohn's experience diarrhea and not constipation and when given an opiate medication, as we know it slows down the movement of digestion.  Ultimately giving the patient a false feeling of getting better.  Not only does the diarrhea dissipate, but so does the pain that Crohn's sufferers experience.  It really all depends on how much pain meds you are taking and for how long. 
So, for you, not being given anything for pain was really a blessing, because like so many people that aren't informed and educated enough to know that opiates and digestive disease, don't mix, some people end up with worsening of the disease, drug addiction and just end up in a bad situation.  
I do think it's wrong that being in a hospital setting and experiencing any pain level over 5 and not controlling it with SOMETHING, is just wrong.  People should not suffer and by law, if you are being overseen by medical professionals in a monitored setting, they have to control your pain.  That's the law in NYS anyway.  
In the end, you ended up coming out and conquering the disease the right way by listening to your body.  Your original post was quite sometime ago, Hopefully, you are still doing well and feeling good:soledance:


----------



## crushingcrohns

ekay03 said:


> I did not see this. Ok then you already know


That's a dog??? AHAHHAHAHA Omg that's hilarious!!!


----------



## ekay03

crushingcrohns said:


> That's a dog??? AHAHHAHAHA Omg that's hilarious!!!


Yes that is my pound pup Sarah. I was just having a little fun w/ per pic. I noticed you are 33 and have Osteoporosis. I have 2 questions for you. what are you doing for your bones and if it gives you pain, how do you treat it? I have been ddx / osteopinia also caused be years of prednisone.


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## KWalker

JohnnyO said:


> KWalker obviously works for a "drug rehab" and is therefore biased as she needs job security.


Actually, I'm a male, and I do not work doing drug rehab. There is so much false information from some people with no actual professional or educational experience it's unreal, so I'm not even going to waste my time correcting most of the comments.


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## Cupcake

This thread is a giant train wreck. But there are few very valid ideas.

While some people opt to use marijuana for medical reasons, there are many other forms of pain control that can be effective. I found swimming in a heated indoor pool and doing yoga and pilates to offer quite a bit of relief. Anytime I've had just mild pain to deal with, trying to maintain activity works for me in keeping the pain at bay. The more I just sit around, the worse it really does hurt.

However, on the note of feeling truly bad, last summer I had the worst flare up of my life. I was eventually diagnosed with having upper GI and esophageal crohn's as well as my previous diagnosis since childhood of fistulizing crohns. While hospitalized I was given dilaudid by IV and I have in and out memories of even being in the hospital. On my release I was given scripts for percoset and ultracet.

During this time, I still had major issues swallowing. Eating was increasingly painful. Getting food down was terrible, much less swallowing pills. I figured this would be the perfect time to attempt to use marijuana for medicinal purposes. I had no attraction to smoking previous to this, but I had some acquaintances who were well known for their favorite and most common past time. 

After getting in touch with them, I went to one of their houses to hang out. I was driven by another friend, who is totally sober. I found out both of the two could locate product for me. They both were dealing with chronic pain issues. They lamented that it was too time consuming to seek treatment for their pains. Seeking out an appointment with a doctor doesn't mean you can get it fixed, they have to send you for tests and it takes forever. We sat around and waited. Finally they got a text. Whoever they were waiting for wasn't coming over.

I went home. The next day I spoke with them to see if they had gotten in touch with their contact. They had tried all three people the typically used, and no call backs.

The day after that? They made contact. It was going to be after dinner but before 2 am when they were having one of the contacts drop by. I was asleep.

The next day, I finally just called my doctor and made an appointment. Whether you approve of medical marijuana or not, I think what I ultimately got out of this ordeal was how no matter how disorganized and dysfunctional the medical community may be, to some it's a lot easier to navigate than seeking out other avenues. 

While I feel it's terrible that these two young people are living in chronic pain, I find it rather ironic. I often think if they used the energy they had to put forth for seeking out places to buy their marijuana into seeking treatment for their medical issues, it wouldn't have been any more time consuming or inconvenient than what they had been living with already.


----------



## JohnnyRottenAppleseed

So did you try the cannabis for pain? Its as effective as a vicodin without the Addictive component. Yoga and exercise are great for pain relief. My pain is greatest when sitting. Your argument about safe access to cannabis is correct. It shouldnt be such an ordeal, and isn't in CA where I live. There is a dispensary a mile from my house and I'm allowed to grow a personal amount.


----------



## Cupcake

JohnnyO said:


> So did you try the cannabis for pain? Its as effective as a vicodin without the Addictive component. Yoga and exercise are great for pain relief. My pain is greatest when sitting. Your argument about safe access to cannabis is correct. It shouldnt be such an ordeal, and isn't in CA where I live. There is a dispensary a mile from my house and I'm allowed to grow a personal amount.


Yes, I did try it. I was pretty much the only option I had which was viable at the time. I couldn't eat or swallow. I found I was coherent enough to go about doing my tasks around the house as well, which isn't the case for me when I've taken oxycodone. Staying in any one spot for too long is painful for me, too. I think that's why I have trouble getting to sleep at night. It was a cycle: take painkillers, fall asleep, wake up hurting from being in the same spot too long.

See, I'd have no issue with cannabis for medical uses if it's something one can obtain in a safe and reliable way. I was turned off from using it any further due to the ordeal of tracking down people that were friends of friends at odd hours of the night. I didn't like the idea of having to sneak around, or going over to people's homes I didn't know.

Overall, I realize that painkillers exist for a reason - when people are dealing with real pain and suffering and need relief from that. It's made me want better treatment so I don't have to rely on them to be able to function. In having a condition which requires controlled substances on occasion, it's made me skeptical of people who are comfortable to just numb themselves to the point of not wanting to seek treatment. 

People have popped up into my life with the thought that I have drugs, something they want. Their complaints come off like complete bullshit to me, "I have a bad back" or "I get headaches". It's as if they think that because I'm living with a chronic illness, I'm going to be sympathetic to their drug seeking. Nothing angers me more than people comparing my life with crohn's to medical problems that could be fixed or alleviated with treatment, physical therapy or lifestyle changes. I try not to pass judgement on anyone, but that is my one breaking point. None of us did anything to give ourself this disease, and I don't believe any of us consciously turn our illness on or off at our convenience. The struggles I've talked to other IBD patients with over the years, in seeking better treatment or options are lifelong and not something we use as an excuse or a cop out. Most of us would do whatever we could to have a normal life. It takes a really strong person to stay positive and go through all of this day to day. I don't see how anyone would 'want in' on having a long term illness!


----------



## JohnnyRottenAppleseed

"People have popped up into my life with the thought that I have drugs, something they want. Their complaints come off like complete bullshit to me, "I have a bad back" or "I get headaches". It's as if they think that because I'm living with a chronic illness, I'm going to be sympathetic to their drug seeking. Nothing angers me more than people comparing my life with crohn's to medical problems that could be fixed or alleviated with treatment, physical therapy or lifestyle changes. I try not to pass judgement on anyone, but that is my one breaking point. None of us did anything to give ourself this disease, and I don't believe any of us consciously turn our illness on or off at our convenience. The struggles I've talked to other IBD patients with over the years, in seeking better treatment or options are lifelong and not something we use as an excuse or a cop out. Most of us would do whatever we could to have a normal life. It takes a really strong person to stay positive and go through all of this day to day. I don't see how anyone would 'want in' on having a long term illness! "

I can relate to this living in a state that allows safe access to medical cannabis to those in need while also allowing an industry to flourish that hands out cannabis recommendations for any ailment. It makes a mockery of people who are legitimately using cannabis for medical reasons. Having said that, I also believe it to be a wonderful cure all that can replace many of the synthetic medicines sold to us. I think we should be free to choose what we put into our own bodies, and creating a medical excuse to use a god given plant seems insane to me.  I personally believe that it should be regulated like alcohol or only classified as a "supplement". The pharmaceutical industry and the FDA already have patents on the medicinal properties of cannabis and will never allow the whole plant as it would eat into their trillion dollar pharmaceutical business.

Regarding the drug seeking behavior of pharmaceutical addicts, the principal is the same. They use the excuse to use pain pills for their headaches and back pains and justify using higher doses for pain. Some people do need it for pain however, and because there is no accurate way to measure for this, we must trust patients and give them the benefit of the doubt. We also need more public money for drug treatment instead of incarceration. It all comes down to having an addictive personality. Either you have one or you don't. Maybe they can develop from environmental factors and maybe you are born with it. I don't know. I definately have one.


----------



## Cupcake

JohnnyO said:


> Regarding the drug seeking behavior of pharmaceutical addicts, the principal is the same. They use the excuse to use pain pills for their headaches and back pains and justify using higher doses for pain. Some people do need it for pain however, and because there is no accurate way to measure for this, we must trust patients and give them the benefit of the doubt. We also need more public money for drug treatment instead of incarceration. It all comes down to having an addictive personality. Either you have one or you don't. Maybe they can develop from environmental factors and maybe you are born with it. I don't know. I definately have one.


This is a very good point. Decriminalization of drug offenses is something I've thought about many times. I lived in Kentucky for many years, which was formally a state producing hemp. The economy was very negatively effected in recent years, as much of the blue collar jobs in factories were no longer available. It was brought up in community discussions many times when I lived there how the state could use another cash crop.

While I understand and respect your statement regarding your own personality in regards to addictive personalities, the fact that you are able to recognize this behavior in yourself really says that you're self aware and proactive in your usage of pain control methods. Just logging into this website and exchanging stories and information with other patients really says that you are trying to engage in learning more to help yourself and help others. I can't say as much for the people I was discussing.

I think what made me judge people for their begging me for drugs, was the fact that I knew them, and I didn't view their behavior as being that of someone dealing with chronic pain, needing control from pain which was making their life miserable. I ended a friendship with someone; I've never felt like more of an asshole. The guy had an accident at work, and had been dealing with back pain. This lead him to being off work, for the grand scheme of suing his former employer for workers comp and a disability law suit. In the time that he spent being off work, most of his time was spent getting high, drinking with friends, or partying. 

He had been seen by a family doctor a number of times, and hadn't had but 2 x rays in his year off work. He had declined having a MRI, and did not seek out any specialists to diagnose his pain. When he was complaining to me one day about his body pain, and how he had no idea what to do to even get treatment. I knew I was going to the university hospital for tests that afternoon so I made the effort to get a recommendation to which doctors would be best for treating his injury. I also researched that as it was a workman's comp case, he wouldn't even have to pay any copays to see the doctors or go to physical therapy in the clinic, that they took his insurance, and saw to it that I got the correct paperwork for him to provide his insurance company to have faxed to get a pre-authorization. I even made the appointment for him. 

I had mentioned that indoor swimming in the heated pool or yoga might be good for him, but his reaction was "Um, that's just stupid."

Because of his lifestyle - barely sleeping, only eating fast food, drinking beer all night in addition to taking his pain killers (oxycodone which was prescribed to him, or hydrocodone which he was buying on the street), his health was quickly going downhill fast. He could barely eat because of how wrecked his stomach was. I offered him what was left of my carafate when I was moved over to Remicade and no longer was taking it. He was then able to eat a little more. I gave him my typical "you aren't going to feel better unless you start to take care of yourself" talk. It really was hard to watch anyone doing this to themselves. I really wish he had just smoked pot.

After his initial doctor's appointment, things were looking very good. The clinic I was able to locate for him was a world class spine surgery center. They were looking into finding a surgical fix for his injury. He went to physical therapy a few times and even commented it was working, he just had to remember to follow through with doing his exercises.

I got a strange call at an off time one day, where he called me begging me for whatever painkillers I might have. I had ultracet which was no interest to him. He was disappointed when he got a spinal block for his pain, as it wasn't anything he could sell or snort. He also offered to trade me for a box of Flector Patches, as they had worked for him but same deal - not very fun. During this time, it turns out, he had decided that continuing the PT and going to see the spine surgeon might have a reversal effect on his bodily pain, and he really was set on getting a settlement someday for his work related injury. This was just crazy to me. If someone offered me a solution which could potentially fix my crohn's disease, but I was going to have to work hard and probably be broke my whole life, I'd take it. 

The last time we saw each other was at a birthday party for a 4 year old. I always found it strange that whenever he was in good spirits and not sitting around pondering his pain, IT DIDN'T HURT! This same guy who begged everyone he knew for pills which he was snorting at bars while drinking was jumping on a trampoline, and riding a motorcycle around town. He joked that no one better tag a photo of him on Facebook, because he didn't want that coming up in court that he was up and about.

While I don't know if this person truly was addicted to their pain medication, I think what upset me the most was how I felt they really weren't interested in getting well. It ruined our friendship because when I needed a supportive friend in my life, I found I was only someone who would listen when no one else would, and help to find a solution. Ultimately, when the illustrious law suit for worker's comp was settled, my former friend ended up with a check for $5200. This was all he got after getting 75% of his pay rate, with his lawyer's fees subtracted. It took him 2 years to get that check.


----------



## JohnnyRottenAppleseed

I could easily excuse being in OxyContin. I average 20+ doctors visits per year, have back problems, recurring abscesses, and chrons. I've also been addicted to oxy and never want to be an opiate zombie again. Im glad I am no longer enslaved to opiates. Its a terrible addiction.


----------



## KatieLu

*I also cannot have narcotics*

This post caught my attention because I also have to be careful about the kinds of medications that I take for pain for my Crohn's. I am an alcoholic/addict and have been sober for over four years, so for me its something I have to be very careful about. In general this is how I deal with it: If tylenol doesnt work and I have to go to the hospital I ask for non-narcotic pain meds. If they really arent working I will then accept narcotics. However, I always make it very clear that I am an addict and cannot be sent home with a perscription. After my surgery I had to be sent home with a script and I stayed with my mom to recover for a few days, she doled the pills out to me as perscribed, so it was never my decision. What it comes down to is I have to ask myself. Do I really need this? And I avoid them as much as possible. Hope this helps. Good luck!


----------



## tots

I was just in the hosp for 8 days- on my SBFT they found the narrowing in my small bowel. Even after one week on IV steroids. My Radiologist said that took alot of the inflamation down already. Same place as 20 yrs ago. They gave me 1 mg dalaudid (sp) in the hosp. Good thing I was laying down, it knocked me on my butt!
At home I have used hydrocodone. I take 1/2 at a time. I have found most drs are reluctant to 
treat pain at home. Not sure why. The birth of my three kids didnt hurt as much as my cramps can get. I usually only take enough to take the edge off the pain. My Dr did give me Bentyl and it really helps with the cramps. I was suprised. Ask your Dr about that one.


----------



## tots

I tried to post on this one but, I somehow posted it somewhere eles ?? 

You can try Bentyl for cramping and it really works well! I dont think it takes the place of pain meds if you are in alot of pain.


----------



## Blenda2U

*Drug of choice*

My intestines drug of choice is prednisone.  When I am on it for whatever reason it is like cocaine for a junkie, pure bliss.  Of course it doesn't care about the nasty side effects which hit with a vengeance. It just loves the feeling of "being normal" that happens with high doses.  I try to get my doctor to give me anything but prednisone but alas it is still the best anti inflammatory out there (usually pneumonia or nasty old upper respiratory type sicknesses).
Serious note though....I lived for years with pain as I am sure the majority of people who suffer and don't know why have.  That in my opinion gives us a higher chance at addiction.  I was so excited to not hurt.  When I was diagnosed and assessed the doctors pulled out their scripts and started righting.  Finally I didn't have to suffer anymore their really was something wrong with me.  It wasn't in my head or made up (broken home, teenage angst, etc...).  It was a scary time but eventually I learned I didn't always need a pill...except for the migraines which were a by product of birth control pills (pills, pills, pills...yuck).  One thing that helped the migraines was inderall xr.  Seriously though I battled addiction and had to learn what I needed and what I wanted just because it made me feel better.  Kudos to all out there who have found and are finding what works for them.


----------



## Blenda2U

tots said:


> I was just in the hosp for 8 days- on my SBFT they found the narrowing in my small bowel. Even after one week on IV steroids. My Radiologist said that took alot of the inflamation down already. Same place as 20 yrs ago. They gave me 1 mg dalaudid (sp) in the hosp. Good thing I was laying down, it knocked me on my butt!
> At home I have used hydrocodone. I take 1/2 at a time. I have found most drs are reluctant to
> treat pain at home. Not sure why. The birth of my three kids didnt hurt as much as my cramps can get. I usually only take enough to take the edge off the pain. My Dr did give me Bentyl and it really helps with the cramps. I was suprised. Ask your Dr about that one.



Remember those breathing exercises from childbirth?  They are amazing at cramps and those moments it is a race to a restroom.


----------



## JohnnyRottenAppleseed

Blenda2U said:


> My intestines drug of choice is prednisone.  When I am on it for whatever reason it is like cocaine for a junkie, pure bliss.  Of course it doesn't care about the nasty side effects which hit with a vengeance. It just loves the feeling of "being normal" that happens with high doses.  I try to get my doctor to give me anything but prednisone but alas it is still the best anti inflammatory out there (usually pneumonia or nasty old upper respiratory type sicknesses).
> Serious note though....I lived for years with pain as I am sure the majority of people who suffer and don't know why have.  That in my opinion gives us a higher chance at addiction.  I was so excited to not hurt.  When I was diagnosed and assessed the doctors pulled out their scripts and started righting.  Finally I didn't have to suffer anymore their really was something wrong with me.  It wasn't in my head or made up (broken home, teenage angst, etc...).  It was a scary time but eventually I learned I didn't always need a pill...except for the migraines which were a by product of birth control pills (pills, pills, pills...yuck).  One thing that helped the migraines was inderall xr.  Seriously though I battled addiction and had to learn what I needed and what I wanted just because it made me feel better.  Kudos to all out there who have found and are finding what works for them.


Wow! Your theory on untreated chronic pain and addiction is revolutionary. You may be on to something.


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## Plumeria

JohnnyO, were you addicted to opiates? I was and once I got off them the pain slowed down. Abusing them had gotten to a point where they were making things worse not better. Prednisone...Ive never heard of peeps getting addicted to it but I agree it does give euphoria because you feel better! Thanks for your post!


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## JohnnyRottenAppleseed

Yeah I did 6 months of methadone and never really liked opiates after that even though I have occasionally since them taken them for severe pain only but even then I'd rather use cannabis if at all possible. I have a very high tolerance for pain. When I was addicted to opiates any slight discomfort and I wanted more opiates. It made me hypersensitive to pain after a few hours after the opiate peaked.


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## Blenda2U

Actually I was trying to take a heavy subject and make it light.  Prednisone makes my intestines feel normal.  I don't hurt as much.  Side effects are vicious though but for that brief time while on them my belly doesn't hurt.  I have battled my demons and will continue to do so as long as I draw breath.  Pain medicine has been a demon since it has the duel effect of slowing intestines down and causing me to not hurt.  I learned alternative ways to dealing with pain since I have a very addictive personality.  We all have different pain thresholds and ways to handle pain.


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## Plumeria

Hi Blenda2U...got ya. Frustrating thing about messaging..you can't hear the witty statements...haha. I was on prednisone for about a year and it did work but I ended up with osteopenia. I was too emaciated at the time to get a moon face or gain substancial weight but damn did the food I did eat taste good!  I was an alcoholic and prescription med addict in full swing the first few years of having Crohns. Once I detoxed and stayed sober and clean off the benzos, opiates, and booze, my crohns got about 80% better instantly. What are some of the alternative you use? I feel eating better, adding in supplements, exercising, and meditating for stress reduction help immensely!


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## Blenda2U

Plumeria I totally agree, my wit does have a tendency to find the T and become a twit...lol.  I am very sorry to hear about the osteopenia, that doesn't seem fair that you  try a medicine to help another issue then you turn around and contract something else from the meds.  I almost lost a hand due to iv prednisone.  One thing that happened during a hospital stay, I was on a liquid diet after a surgery and taking sulfasalzine (not sure if I spelt that one right or not) and flagyll (yuck) and iv prednisone.  Due to sulfur in sulfasalzine I started turning orange, like spray on orange...think George Hamilton...lol.  Then again I found the pleasure of a morphine button and when that came out demerol and phenergan were my new allies.  Yep, needless to say I fell head over heels with pain meds.  Now days when I do take something for pain I can only have low doses with the minimum amount of codeine.  It appears that God played the ultimate joke and anything strong gives me a raring horrendous headache.  I appear to have an allergy to codeine.  I really try to do my breathing exercises which helps in focusing me and my pain.  It isn't always effective but for me it works.  **Disclaimer:  Any comments I make that include the term "me" are not reflective of others nor intended to reflect what others should or should not think or do.  Nor are they making claims to what others should or shouldn't do.**


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## jmcbrid2

I read somewhere that crohns can actually mimic endometriosis....could that be a possibility for you?


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## jmcbrid2

*gaining weight on pain meds?*

I take percocet for my pain. sometimes it isn't strong enough. i tried dilaudid but it makes me incredibly sick when taken orally (through an IV, I'm fine). but pain meds help tremendously with my diarrhea too...but i think it's made me gain weight...does anyone know about gaining weight while on pain meds?


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## ekay03

jmcbrid2 said:


> it's made me gain weight...does anyone know about gaining weight while on pain meds?


Hi jmcbrid2 Pain meds and gaining weight. Perhaps it is because when you take the pain meds you can eat more cause you have less pain associated with eating. I think this has happend to me too. I haven't gained more than a pound or two, but I have to keep a close eye on my weight.  If you are up to it maybe a daily walk can help keep your weight from creeping up


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## Redbeard

Went through a lot of pain meds. Never addicted really, but it never occurred to me when I didn't need them anymore...I was a little too spaced out. Fentanyl....


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## jordanfromthecape

*the long road of addiction.....and dealing with pain*

Wow,  

Ive heard soooo many good things reading through this whole thread.  So many good and some not so great.  

My personal standpoint on the issue of addiction and pain management is probably rather familiar although maybe not very well liked....  

I was diagnosed with crohns when i was in the 8th grade along with lymes disease and severe depression (im assuming this was aggrevated by the other illnesses).  At that time i was bleeding uncontrolabely and in immense pain pretty constantly.  Subsequently began a long time presciption to oxycontin, oxycodone, vicodin, dilaudid, fentanyl, librium, lomotil, and pretty much everything else with a narcotic base that i cannot remember at this time.  I am 26 years old now and have JUST kicked opiate based medication after 12+ years.  I am, as of tomorrow, 21 days sober.  totally sober.  no pot, no booze, no narcs, no nothing.  I havent done that.  Ever.  Since substances were first introduced into my body.  I go to A.A. meetings every single day (have avoided N.A. becuase in my area at least they tend to be a place to score drugs).  Now, i must say this about myself, i am a VERY addictive person.  You name it, and if it makes me feel good, ill get addicted to it.  That being said, ive found in my years (relatively few though they may be) that it is few and far between the person who is prescribed narcotics for an extended period of time that does NOT end up addicted.  Ive heard tell the difference between dependance and addiction.....i dont claim to know much about this, but i do know that either one is a long, nasty, scary road.  I know that for many pain medication for quality of life is at times a necessity, but it must be just that.  Necessity.  To anyone struggling with pain i sympathize in a major way.  I still struggle with pain as well.  What i do know now though is this:  I would rather use "less effective" methods of pain management and learn/teach my body to handle the pain when i can then to live in the thrawls of the pain caused by who i am and what i do when narcotic pain meds are a regular in my life.  This all probably sounds very preachy and for that i apologize, but if i can help lead anyone from a path of addiction i will do whatever it takes.  Opiate based pain medication ends up (and i know everyone is different, but im sure there are others like me) controlling my life.  Fear of running out of pills, fear of the addiciton itself both physically and especially mentally, fear of withdrawals, fear of judgement, fear of pain without the pills, fear of losing (or never really creating i suppose) important memories due to being in a haze of pain pills......the list goes on and on.....and on and on.  Today, though in early recovery from a pretty severe addiciton to numerous medications (which were ALWAYS obtained legally via doctors orders), I am stronger, healthier (though still symptomatic with the crohns), and for once in my life HAPPIER then i can ever have hoped to be.  For those of us who truly need them these medicines are a good thing.  One that should be monitored at bare minimum, but a damn good thing none the less.  By the grace of my cat i no longer (for now at least) TRULY need them, and i am beyond greatful.  I guess the long and short of this is to be very aware.  Aware of how honestly you need narcotic pain medication and of what ammount.  Thank you all for listening to my obnoxiously long run on ramble.  

Best of luck, much love, and all best wishes to everyone in these halls.


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## Redbeard

jordanfromthecape said:


> Wow,
> i am a VERY addictive person.  You name it, and if it makes me feel good, ill get addicted to it.  That being said, ive found in my years (relatively few though they may be) that it is few and far between the person who is prescribed narcotics for an extended period of time that does NOT end up addicted.    .


I was lucky to get off the pain meds with normal tampering, my doc was surprised I didn't need help getting off them. I did feel like increasing it at times while doing the taper. I didn't though... Hopefully others can get off the meds as well as I did. I never felt addicted though, never out of control.


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## Plumeria




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## jordanfromthecape

*Redbeard*

Redbear that is so excellent.  At the risk of sounding condescending (i do not intend to be) i am hugely proud of you.  The spot many of us G.I. challenged folk are put in with pain, quality of life, and the balance of such things is a slippery slope at times to say the very least.  It is so refreshing and uplifting to hear a success story like yours.  Having recently gotten entirely sober myself i feel much better, but do worry that sometime in the future i may actually necessitate pain management of some form or another.  That for me is a fear because i know how i am effected by such medications.  For some it is a non issue, for me it is.  That is something i need to accept, respect, and remember.  Not always an easy thing to do.  At any rate, today is a good day even without my pain being entirely "under control" and for that i am greatful.  I find that, difficult though it often can be, a positive attitude is our best friend through such trials and tribulations.  

To all in these halls:  Stay strong, be well, and may health come to be on your side.  Endless thanks and love to the people who share here.


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## Plumeria

I have had to have surgery for fistulas since I got clean and sober. For two of them I got away with just using Torodol...it really works. For the last and major one I had to use vicadin. I planned this with my surgoen, shrink, friends in the program, family, and sponsor before the surgery, ie, I worked my program! *I had already gone through the steps*. I had someone hold on to the bottle and dispense them to me. They also urged me to start tapering after 3 days. I realized my addiction with messing with my head at day 3 so instead, I stopped them all together and started the Torodol. As soon as I stopped taking them, the addiction shut its mouth!!


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## mike316atl

I have only been prescribed Tramadol for my Crohn's. It does help at times, but it is something I cannot see myself getting addicted to. The docs have me on 300mg daily. I was also prescribed dicyclomine and it helps with the abdominal cramping and pain.


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## steelerfan

I can say that I did go through a period of time where I thought I was becoming too reliant on percoset.  Often looking to see how many days of pills that are left is a sign.  Worrying too much about whether my dr. will give me more is also a sign.


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## allieinwonder

Mike, they allow you on 300mg of tramadol a day? Wow! My doctors only allow me 150mg a day, and it isn't enough for my bad days. But they refuse to up my dose or give me something stronger for my breakthrough pain. But be careful...tramadol is addictive! I have heard some awful stories of people who tried to stop taking it and had bad side effects. I myself have been on tramadol for a year and a half now, and my is slightly dependent on it. When I was put on pred the first time (higher dose than now) I didn't need the tramadol, and stopped cold turkey, and had terrible withdrawal symptoms! MY mind isn't addicted, but my body is dependent. Just be careful!

Steelerfan, that kind of worries me, bc I count my pills of tram and I also kind of worry when I think I might run out. But I am just worried about being in pain...Because I go huge gaps without taking it, and I only take it when I absolutely have to. I try my best to take it a minimally as I can.


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## steelerfan

It definitely worried me.  I am not on any pain meds now.  I would take them when my pain was much less than in the past...it was def all me...one of my flaws is addiction...of all sorts.  If I like something, I want more of it...maybe its a self control issue lol...is there a difference between lacking self control and addiction?


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## Josephine

I have being addict prednisone in the early days.


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## steelerfan

I guess that is possible...if only (for me) because the stomach pain goes away...without the feelings of euphoria...which was my problem...I enjoyed the euphoria.


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## mike316atl

allieinwonder said:


> Mike, they allow you on 300mg of tramadol a day? Wow! My doctors only allow me 150mg a day, and it isn't enough for my bad days. But they refuse to up my dose or give me something stronger for my breakthrough pain. But be careful...tramadol is addictive! I have heard some awful stories of people who tried to stop taking it and had bad side effects. I myself have been on tramadol for a year and a half now, and my is slightly dependent on it. When I was put on pred the first time (higher dose than now) I didn't need the tramadol, and stopped cold turkey, and had terrible withdrawal symptoms! MY mind isn't addicted, but my body is dependent. Just be careful!
> 
> Steelerfan, that kind of worries me, bc I count my pills of tram and I also kind of worry when I think I might run out. But I am just worried about being in pain...Because I go huge gaps without taking it, and I only take it when I absolutely have to. I try my best to take it a minimally as I can.


Yes, they said the max a person can take is 400mg and they didn't want to do that! During my last colonoscopy, they saw lots of ulcers, inflammation and such. They also saw me in lots of pain! Guess thats why they want me at such a high dose?


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## chrisnsteph1022

Maybe that's why my tramadol does nothing for me. It's only 50mg! I take oxycodone/percocet for pain. I was getting better and didn't take any for a few weeks, but I've started taking it again the past couple days. 3.5 more weeks until my next infusion!


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## mike316atl

chrisnsteph1022 said:


> Maybe that's why my tramadol does nothing for me. It's only 50mg! I take oxycodone/percocet for pain. I was getting better and didn't take any for a few weeks, but I've started taking it again the past couple days. 3.5 more weeks until my next infusion!


It doesn't do that much for me! They won't prescribe narcotic pain relievers to me because of the effects it has on the bowels. I was also just diagnosed with degenerative arthritis in my back as well. Not a great few months to say the least! All I can think to myself is that I am 26 with these life long diseases now.


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## Biek

I've battled addiction in the past.  I was only 18 when diagnosed - went from being an athlete my whole life, played baseball competitively and was going to play in college until all my health issues surfaced.  Needless to say I got depressed and was in denial for many years.  I continued to eat and drink and live my life with no regard to how it would effect my health.  I had two bowel resections just a few years apart and got hooked on hydrocodone.  I was soon introduced to Oxycontin and became hooked on that immediately.  First it became a mental addiction - it made me feel better and relieved my anxieties.  But it wasn't long before it became a physical addiction.  I was buying them off the street, crushing them and snorting them.  I lost my job, my family, my doctor and had sold my belongings to pay for more Oxy.  I eventually started IV'ing them and that's when things got really bad and I wished for death.  I wasted several years of my life on that junk and if it wasn't for my family I probably would have killed myself.  Because my parents and sisters were there for me, I eventually asked for help and went through detox multiple times and eventually went into a 30 day inpatient rehab center in Florida.  Long story short I've been clean for almost two years and my life has completely changed.  I found a new doctor, no longer on any pain medicine and take my medicine religiously.  I'm no longer in denial with my disease and finally taking charge of my life.  It was a crazy journey but it has made me a stronger person and I'm better because of it.  I could probably write a book on the crazy shit I've experienced.  I hope none of you have had to go through what I did and if you see yourself becoming dependent on pain killers, get help immediately before its too late.


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## JohnnyRottenAppleseed

Oxys are the worst. I got hooked on them when they had the easily removable coating. The manufacturer should be held liable for murder for how many have died directly or indirectly to OxyContin. There is hope though. A few of us have been lucky enough to get out in time. I know people who died from opiates. No joke.


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## Biek

Yes, that's when I was on them as well.  Now they are hard to abuse with the new formula.  Unfortunately myself and many others switched to heroin because of the new formula and I too lost a friend to the drug.


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## JohnnyRottenAppleseed

Same thing happened to me. Met my heroin connect at a county detox. Finally, after a year of that, i sought help and ended up on methadone for 6 months and never looked back. That was 7 years ago. . Good job!!! Only someone who's been through the bowels of hell with opiate addiction knows how much better you must feel now! Did you take suboxone to help with opiate withdrawals? I don't think I would be opiate free if it wasn't for that short 6month stint on "the juice", but methadone also has a nasty and prolonged withdrawal. Glad it's in my past, but I can relate to the guilt of time lost and wasted but we shouldn't waste our present moment regretting the past. That would be a waste. Thanks for sharing!


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## scrubs

I have suffered from some really bad pain - the kind that makes me crawl into a ball and writhe around in bed (and sometimes the floor). Tylenol and tramadol work for me in that they take the edge off and make it more bearable, but the pain is still bad and I am still trying to see what helps the best.

Tramadol is an opioid and is still potentially addictive. However, it works differently from other opioids like morphine and oxycodone. It is overall less addictive and has less GI slowing than other opioids. Prolonged use of any opioid will cause some sort of physical dependence so long term use is generally not recommended. Do not let the fear of physical dependence prevent you from seeking something to help with the pain though!


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## NYCIBDGUY

WOW...  I'm just finding this thread now and although I haven't read all the messages it's so amazing to see that I'm not alone!!

I was diagnosed with Crohn's disease when I was 10 years old (33 now).  I went through my entire youth running to the bathroom because even though I wasn't in a complete flare up, irritable bowel symptoms persisted.  It led to embarrassment, low self-esteem, anxiety, depression, you name it.

I was really passionate about my goals in life, but after a while of fighting the rejection and struggles to succeed, the combination just knocked me over.  

I felt like the doctors just didn't understand, and didn't push for the psychiatric help I desperately needed.

After about 4 years in a career path that I enjoyed I hit a wall of resistance in moving forward and, combined with my anxiety related symptoms, I gave up.

I changed cities and although I was able to get jobs here and there, it was very hard for me to feel satisfied and my symptoms persisted psychologically anytime I was further than 5 minutes from a bathroom.  I left another interesting job in part because of this.

Finally, I didn't know what to do.  I was able to get on unemployment and get financial support from my family, but I ended up turning to weed, and then opiates just to try to take a break from my stomach pain.  My opiate addiction lasted over a year, and I relapsed from time to time.  Suboxone was a savior, as was leaving New York.

Now I'm in a situation where I see a therapist who is helping me.  My only Crohn's meds are Lialda, Remicade infusions every 6 weeks, and vitamins.  I also take Celexa and Ativan for my psychological problems.

I do find that when i'm about a week away from a Remicade infusion I get diarrhea, and I've been taking small amounts of suboxone to help deal with that although I am almost out of my supply from when I was cleaning myself up.  

After going through addiction and studying medications online as much as I can, I really believe that suboxone could be a miracle drug for Crohns relief.  Yes, it is an opiate... but I have never ever felt the need to take more of it as, unlike other opiates, it has a limit to how much you can take and feel the effects.  It doesn't get me "high" but it makes my stomach feel so much better.

Is there any chance this medication can someday be added to the tools a GI doctor has for treating Crohn's symptoms??


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## JohnnyRottenAppleseed

"They" would never allow suboxone or methadone to be used for Crohn's as it's associated with "junkies".  I'm sure they would be good thought. I've only been on methadone.


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## NYCIBDGUY

JohnnyO said:


> "They" would never allow suboxone or methadone to be used for Crohn's as it's associated with "junkies".  I'm sure they would be good thought. I've only been on methadone.



Although you are right, it's sad.

I never felt that the doctors properly treated my symptoms, in multiple cities even.  When you feel trapped by your disease it is only natural to want to self medicate. 

Also, doctors don't mind prescribing other opiates that just lead down a bad path.

I guess what I'm trying to say is that if you are going to turn to pain killers (whether through a doctor or elsewhere), suboxone is probably the best one out there for a couple reasons.

1.  There's a maximum dose beyond which you won't OD or feel higher, it's just the max.  So, unlike other opiates, you don't feel like you need to keep increasing your dose.

2.  It forms a barrier preventing other opiates from linking to your receptors so you're safer from other opiates.

It's been a godsend for me and I portion it out so I won't run out for at least another 5-6 rounds of Remicade.


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## TheyCallMeRC

I haven't read every post in this thread, so I hope I don't echo someone else exactly, but just thought I would share my pain management and maybe a couple of tips for those that are not aware. Also I want to say that I also have degenerative disc disease along with my crohns pain and that's why I see a pain management clinic.

Back before my last surgery (small bowel resec. with illeostomy for a year to promote less scar tissue) my GI dr. was treating my pain with Percocet 10/375. This was starting not to work and he refereed me to a pain management clinic. This is a very strict and respective clinic, not a pill mill, we have to take urine screens every month and they constantly run various tests to make sure the pain drugs aren't messing up anything.

Anyhow, after 5 years and the body naturally becoming dependent and tolerant to narcotic pain meds., They have me on Morphine Sulfate 100mg 3 times a day and Roxicodone 30 mg 5 times a day.

A lot of people have posted how narcotic pain meds. slow down the digestive system and this is true for the most part, but as I only may have close to a normal bowel movement sometimes when on high doses of prednisone, this isn't really an issue for me.

The one tip I want to tell that suprisingly a lot of people don't know is to have the hospital call in your pain doctor if you are admitted. Everytime I have to go to the ER with severe pain, they will give me like 1mg of dilaudid and it doesn't even touch the pain. But the ER docs. don't know and can't just take someones word for it and so they will only do so much. They call in my dr. and he will have them set up a dilaudid pain pump, or whatever it takes to get things under control.

We have pain doctors and pain medicines for a reason, and if used properly can give you a better quality of life. One thing I have found out over 17 years of living with crohns is that no two people will have the exact same symptoms, side effects, pain, etc.....

I wish everyone on here the best of luck with your disease and here's to a cure to crohns!!!!!!


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## ekay03

shanewatson384 said:


> i was just wondering if anyone else here has experienced getting addicted to a pain med? (like codeine)-and-if so--what do you use for pain now? (if anything) i got addicted to tylenol 3's (tylenol w 30 mg codeine). i had been taking them for awhile then-(starting with shingles-one small nerve was in pain along eye--but-that one little nerve caused enormous pain-worse.


Hi shane, you could take acetaminophen. besides that..... IDK. Aside from that there really isn't very much that I can think of. Also it depends on what kind of pain it is you are trying to treat.


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## Dixiedoll23

allieinwonder said:


> Mike, they allow you on 300mg of tramadol a day? Wow! My doctors only allow me 150mg a day, and it isn't enough for my bad days. But they refuse to up my dose or give me something stronger for my breakthrough pain. But be careful...tramadol is addictive! I have heard some awful stories of people who tried to stop taking it and had bad side effects. I myself have been on tramadol for a year and a half now, and my is slightly dependent on it. When I was put on pred the first time (higher dose than now) I didn't need the tramadol, and stopped cold turkey, and had terrible withdrawal symptoms! MY mind isn't addicted, but my body is dependent. Just be careful!
> 
> Steelerfan, that kind of worries me, bc I count my pills of tram and I also kind of worry when I think I might run out. But I am just worried about being in pain...Because I go huge gaps without taking it, and I only take it when I absolutely have to. I try my best to take it a minimally as I can.


I'm on 400 mg of tramadol, thats the highest you can go. Also on Oxycontin ER 30 mg tabs 2x daily.

I started ordering my tramadol online, I get 180 tabs for 100 bucks including express shipping.I was tired of doctors not giving me any trams at all, especially when I have been on them for years.The company I go through is called alignehealth and they have been great.I've been ordering from them for a few months now, and have not had any problems.Getting tramadol online is illegal in some states, thankfully not mine.


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## allieinwonder

Dixiedoll23 said:


> I'm on 400 mg of tramadol, thats the highest you can go. Also on Oxycontin ER 30 mg tabs 2x daily.
> 
> I started ordering my tramadol online, I get 180 tabs for 100 bucks including express shipping.I was tired of doctors not giving me any trams at all, especially when I have been on them for years.The company I go through is called alignehealth and they have been great.I've been ordering from them for a few months now, and have not had any problems.Getting tramadol online is illegal in some states, thankfully not mine.


I have heavily thought about ordering my tramadol online as well. My situation has actually changed since that post. My GP has decided that she needs to watch my pain meds like a hawk....she will only give me one months supply at a time, and actually only gave me 2 weeks supply during my last visit to make sure I come back. She is giving me as little as possible, 150mg a day. She did add another pain med, codiene, for night time since tramadol causes insomnia for me, which I am grateful for, but I doubt she will let me stay on that for a long period of time. I mean, I would never up my tramadol to more than that a day unless I absolutely had to (so not an everyday thing), but I don't like stressing over the fact she keeps me on such a short leash like I'm a criminal.

I am in Germany, so I have no idea if it would be legal for me to order it online. I'm here with the U.S. Army, so I would probably have to follow U.S. Law somehow too. Whenever I mention it to my husband he jokingly says we should just order pred, not trams, and up my meds to get my pain down. >.< Obviously remission would be better than all these pain meds, if only the doctors would do more to try and get me there.


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## KevinHumphries

I've been reading these posts for hours, and would like to thank everyone who took the time to write their opinion, or story, they were all very helpful, and informative. 
I was diagnosed with crohn's in 2006, and until recently have been suffering with a lot of pain associated with the disease. many people have said, there is no reason that we should have to suffer, when there is medication out there that could help so many of us have a more normal quality of life. Or should we be made to suffer because of the negativity surrounding theses medications. there is no denying that opiate based pain meds are addictive, and there is a very real possibility of people overdosing, but everything has risks. I've read so many posts about people being so afraid of becoming addicted, and i can relate, there was a time that i feared the same thing. The thing i came to realize though, is that there is no cure in sight. We all have a chronic disease, so for me at least, i stopped worrying about the addiction. every one of us is different though. Not everyone has chronic pain, and those of you who dont should be thanking whatever God you believe in. But for those of us who do, why in the hell should any of us be denied relief from that, why should we be denied a more normal quality of life? Because we may become addicted? seems they should be much more worried about handing out opiates to people with..idk lets say a broken bone, something that will get better. I suffered with extreme joint pain for years, and obviously abdominal pain. The joint pain was much worse though. I could only sleep after being awake for so long that i would just basically pass out from exhaustion, and nobody would help me. That was a terrible feeling, knowing that there was help out there, but nobody caring enough to do anything for me. Fortunately i did finally find a pain management doctor who was willing to see someone with crohn's, if I hadnt, im not sure how much longer i could have handled it before i just ended it myself. People who have no idea what its like, living with chronic pain look down on people who take narcotic pain meds, but to all you out there living with  this disease, none of you should feel the slightest bit of shame for wanting to have the quality of life that they take for granted. My pain doc put me on 15mg oxycodone pills, and gives me 150 a month, which isnt as much as it sounds. It helps so much with the joint pain, and eliminates the abdominal pain. the side effect of constipation just evens me out. I usually only go once a day, and it has a normal consistency. To those of you out there that are on the fence about opiate therapy, I hope this helps. There is no reason you should have to live in pain, not when medication exists that can help you. If your doctor refuses, find a new one, or get a referral for a pain doctor. there is no reason to be afraid of being dependant when you have a chronic illness. Just dont become a addict, never let the pills run your life, never take more than you need to stop the pain, never try to use them to numb emotional pain, and always be honest with everyone about them. Nobody with our disease deserves to suffer, and i hope you all understand that. Getting this disease is bad enough, no need to add more misery to it. Best of luck to all of you. I hope to God im wrong, and someone cures this disease, but until then one day at a time.


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## misterquin

KevinHumphries said:


> Not everyone has chronic pain, and those of you who dont should be thanking whatever God you believe in. But for those of us who do, why in the hell should any of us be denied relief from that, why should we be denied a more normal quality of life?


You have perfectly summed up my own perspective of using pain medication. Before Crohn's, I was the type to avoid all medications in general- also, I didn't really have a need for them. After developing Crohn's in '09 I decided that it made absolutely no sense to me, despite some people's opinions, that I should "deal" with the pain. 

We have a life-long disease that causes chronic pain that at times becomes unbearable. There is a medication out there that can reduce pain associated with our disease and at times, even allow us to live a life somewhat like the life we had before. I never understood the "I'll deal with it" mentality and never will. We didn't "deserve" this disease and we surely don't "deserve" to live with pain for the rest of our lives.

Also, most people with Crohn's are taking all these different types of medications for their disease. Some weaken your immune system so it will be less likely to attack your digestive tract, or prednisone where it prevents your body from beginning that painful inflammatory process. None of these meds are treating Crohn's disease- they are treating the symptoms. All of the medications for Crohn's are mere pharmaceutical bandages. Pain medication is just one more that happens to treat one of the most debilitating symptoms- pain.

Don't feel guilty for not wanting to be in pain. We're human beings and deserve to live a life as fulfilling as anyone else. Unfortunately for us that involves a cocktail of medications. It's quite okay if at least one of those makes us feel good.


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## Dixiedoll23

allieinwonder said:


> I have heavily thought about ordering my tramadol online as well. My situation has actually changed since that post. My GP has decided that she needs to watch my pain meds like a hawk....she will only give me one months supply at a time, and actually only gave me 2 weeks supply during my last visit to make sure I come back. She is giving me as little as possible, 150mg a day. She did add another pain med, codiene, for night time since tramadol causes insomnia for me, which I am grateful for, but I doubt she will let me stay on that for a long period of time. I mean, I would never up my tramadol to more than that a day unless I absolutely had to (so not an everyday thing), but I don't like stressing over the fact she keeps me on such a short leash like I'm a criminal.
> 
> I am in Germany, so I have no idea if it would be legal for me to order it online. I'm here with the U.S. Army, so I would probably have to follow U.S. Law somehow too. Whenever I mention it to my husband he jokingly says we should just order pred, not trams, and up my meds to get my pain down. >.< Obviously remission would be better than all these pain meds, if only the doctors would do more to try and get me there.


Tramadol can cause a bit of insomnia at first, but as your body adjusts to it, sleeping should get easier.Melotonin works great for me, as long as I don't take it every night.
These doctors treat tramadol like they are oxycontin or some other  potent pain med, when really it's not even considered a narcotic at all.I think it's ludicrous really.
I know in some Countries they sell codeine over the counter.Is it like that in Germany?Codeine actually makes my stomach hurt worse.If I take something, it really has to be tylenol or ibuprofen free.I don't think we are suppose to have ibuprofen anyways, my GI said it can cause a flare or make a flare worse unless that is true only in my case.

My GP is willing to prescribe me Oxycontin and tramadol for BT pain.I'm glad he will, because I have yet to find a GI doctor that will help with crohns pain.I have seen 3 of them this year, and none of them would prescribe anything at all.They make it sound like you don't treat crohns with pain meds.One of the reason I like pain meds besides the obvious getting rid of pain is because they slow everything down.So instead of me going 20 times a day, I usually go around 3-7.

I hope everyone is having a good, pain-free day.


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## Jenny06xx

I have to add what's happened with me up until yesterday !

Ive been on a few pain meds for nearly a year now but others before that were weak like codeine phosphate .
My pain medicine cocktail as of now is
Dihydrocodeine 120 mg slow release 3x a day 
Dihydrocodeine 30 mg instant release up to 8 a day 
Tramadol 50 mg 2..4x a day 

At first it was just the 2 dihyrocodeine meds at low doses but over the year I've been upped an then tramadol was added .
This was by my gp , I begged to see a pain specialist because I knew the doses I was given were pretty much overdoses an In my opinion I need to be switched to something better which I can take less of .
I was always told no you will have a massive prescription  an we don't  want that for you , which is fair enough I suppose but not when its clear I definately need some pain relief that works an he cannot help me himself .
So yesterday I returned as he requested to see if he would refer me .

His first sentence was ahhhhh I looked right back through your notes , an you have crohns right ? I replied yes , well then you are always going to have pain aren't you what do you expect me to do ?
I stated that I wanted / needed to have a referral to the pain specialist as I was struggling with my pain not just in my stomach but my back in two places upper and lower and my hip joints .
He said someone in my notes had suggested seeing a pain specialist before so he will make the referral but I have a choice , he makes the referral an then that's sorted or he gets me some x rays waits for the results a then refers me , so I said I want the referral now plus the xrays as I clearly need them .
He then changed things so I now go for xrays an Wait for the results then he will refer me whether there good or bad .
So that's another week or 2 to wait for the referral !!!!

At least I'm getting somewhere eventually I just hope he doesn't fob me off when I return for the results .
I'm fed up of being miserable an in pain  I just want some relief so I can be normal ( ish)
An play with my kids etc 
I also don't know what to expect from pain management specialists so can anyone advise me on what happened when they went or a friend etc 
Thanks 
Jen xx


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## Dixiedoll23

Hi Jen,

I will share _my_ experience  dealing with a pain management specialist.
First, I will go over the positives.He sent me to some specialists, that no other doc wanted to do, and I am glad I finally got diagnosed with some of the things that were wrong like fibromyalgia, and arthritis.He was very good at being on top of things.

I have to say there are far more negatives in my situation than there were positives.
I was pretty much able to get whatever I wanted.This came with an awful price to pay.I started off on a 5mg oxycodone IR, and within the year, I was on a 100 mcg Fentanyl patch and 6 15 mg oxycodone IR's a day!I ended up losing my insurance, so the only option I had was to get off everything and it was complete hell.
I had to sign a pain contract, saying at any time they call me, I would have to come in with my meds to do a count.This was very inconvenient, because it was a 45 minute drive one way.One time I was short on some pain meds, so then he sent me to an addiction specialist.He also made me see him once a week.Everything was just a huge inconvenience, and I never should have been on that much medicine in the first place.

I love my new primary doctor now.He prescribes me oxycontin 30 mg ER twice a day, and I am also on tramadol.He is very understanding and I don't have to go through the BS hassle of the PM doctor.I hated it.

This has been my experience anyway.


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## JohnnyRottenAppleseed

I'd avoid the highly addictive opiates in favor of cannabis. Our bodies quickly become tolerant to opiates and opiate addiction is as big a cross to bare as crohns. I know from personal experience. If you absolutely need them and your primary care physician is a scaredy cat, find a pain management clinic. Crohns is no joke and you should not be made to feel like you are a junkie drug seeker for trying to manage your pain. Again, cannabis will alleviate most people's pain as good or better than tramadol or vicodin, and anything stronger is highly addictive.


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## ECU_Drummer

Tramadol helped me with my pain, but I will never take it again. EVER. My body became dependent on it. I recently had to go on antibiotics for about a week for a minor infection and they exacerbated my flare temporarily. I had to take more tramadol to account for the pain. I was originally ordered to take 3 50mg/day as needed but was taking 4-5 depending on how I felt. I ran out of my script early and cannot have them refilled until 9/14. It has been 72 hours exactly since my last dose of tramadol and I plan on not taking it ever again. The withdrawal symptoms are hellish- flu like symptoms, temp changes and a feeling of your skin crawling.  They have toned way down since yesterday morning and I think I'm on the other side now (thank god). I hate the feeling of having a dose run your life. I was constantly worried about when I would take my next dose of tramadol. I feel that way to an extent with my dicyclomine, but I'm ok with that since its not an opiate like tramadol. I felt so ashamed going through the withdrawal symptoms, I felt like I was some sort of junkie. In the end, I'd rather deal with the pain of crohns and learn how to properly manage it rather than rely on some pain killer that can do me more harm than good. 

If I was told tramadol could be addictive and cause withdrawal symptoms when coming off of it, I would have never taken it.


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## JohnnyRottenAppleseed

Tramadol sucks. A good cannabis Indica has more analgesic properties than tramadol or vicodin and stimulates appetite while suppressing nausea and inducing a sense of well being. Things anyone with IBD can use.


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## Jenny06xx

If you withdrawals are still bad ecu drummer anything opiate based will ease the widrawals an let u come off more slowly .
I see your in america so I have no idea what's over the counter there but I thought tramadol was over there.
The thing with me is I've taken more of my tablets for legitamate pain an so I end up too early for my script as you do but I told my gp this was what was happening an he still wouldnt refer me to the pain clinc ( he's going to now coz I kicked off lol)
He said you have crohns right ? I said yes an then he replied well your always going to be in pain so what do you expect me to do ?
What a twat so I should just put up with the pain until I end up in hospital each time !
Hes going to refer me when my xray results are back good or bad  thank god 
He says he hates dihydrocodeine an it should be taken off the Market , that's what I'm up against !
So I get penalised because he hates the stuff that somewhat relieves my pain !
I'm due my script this week but he added up the days wrong an put tablets not due till 18 th don't give early !
So I'm gonna look like a druggie if I try an get them on the date there actually due which is a whole week before the date he put down idiot.
I'm hoping the pain specialist will help me by changing my tablets and referring me to whoever I need to c , I just hope they don't think I'm an addict I'm dependant yes but not an addict !!
Can anyone else put up there story of the pain clinc ?
Jen xx


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## JohnnyRottenAppleseed

Jenny06xx said:


> If you withdrawals are still bad ecu drummer anything opiate based will ease the widrawals an let u come off more slowly .
> I see your in america so I have no idea what's over the counter there but I thought tramadol was over there.
> The thing with me is I've taken more of my tablets for legitamate pain an so I end up too early for my script as you do but I told my gp this was what was happening an he still wouldnt refer me to the pain clinc ( he's going to now coz I kicked off lol)
> He said you have crohns right ? I said yes an then he replied well your always going to be in pain so what do you expect me to do ?
> What a twat so I should just put up with the pain until I end up in hospital each time !
> Hes going to refer me when my xray results are back good or bad  thank god
> He says he hates dihydrocodeine an it should be taken off the Market , that's what I'm up against !
> So I get penalised because he hates the stuff that somewhat relieves my pain !
> I'm due my script this week but he added up the days wrong an put tablets not due till 18 th don't give early !
> So I'm gonna look like a druggie if I try an get them on the date there actually due which is a whole week before the date he put down idiot.
> I'm hoping the pain specialist will help me by changing my tablets and referring me to whoever I need to c , I just hope they don't think I'm an addict I'm dependant yes but not an addict !!
> Can anyone else put up there story of the pain clinc ?
> Jen xx



Get a new doctor ASAP. He's a douchebag.


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## Dixiedoll23

ECU_Drummer said:


> Tramadol helped me with my pain, but I will never take it again. EVER. My body became dependent on it. I recently had to go on antibiotics for about a week for a minor infection and they exacerbated my flare temporarily. I had to take more tramadol to account for the pain. I was originally ordered to take 3 50mg/day as needed but was taking 4-5 depending on how I felt. I ran out of my script early and cannot have them refilled until 9/14. It has been 72 hours exactly since my last dose of tramadol and I plan on not taking it ever again. The withdrawal symptoms are hellish- flu like symptoms, temp changes and a feeling of your skin crawling.  They have toned way down since yesterday morning and I think I'm on the other side now (thank god). I hate the feeling of having a dose run your life. I was constantly worried about when I would take my next dose of tramadol. I feel that way to an extent with my dicyclomine, but I'm ok with that since its not an opiate like tramadol. I felt so ashamed going through the withdrawal symptoms, I felt like I was some sort of junkie. In the end, I'd rather deal with the pain of crohns and learn how to properly manage it rather than rely on some pain killer that can do me more harm than good.
> 
> If I was told tramadol could be addictive and cause withdrawal symptoms when coming off of it, I would have never taken it.



Tramadol withdrawls can be a double-whammy.You get the classic opiate withdraw symptoms on top of serotonin WD symptoms.A lot of people don't know trams have serotonin in them.

You can take immodium to help ease your WD symptoms, but you have to take more than the recommended dosage.Since you have crohns, and have been on pain meds, it's not going to hurt you to take at least double recommended dosage.Personally I take 8 3x a day if I happen to run out of trams too early.Immodium is actually an opiate that doesn't cross the BBB (Blood brain barrier) so it helps with the gut tremendously.You may want to take something like gasx with it, to relieve any possible gas that can come along with taking immodium.There has been numerous people say that taking a tagament with immodium helps it to cross the BBB. Or prilosec would work too.

Here is an interesting read on immodium.It _does_ help.
http://en.wikipedia.org/wiki/Loperamide


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## JohnnyRottenAppleseed

I'd get on suboxone if you are really addicted to opiates or use some benzodiazepine to help withdrawal symptoms. Clonodine (BP medication) helps withdrawals too. Use at your own risk or advice of doctor and research the meds thoroughly. I've been through opiate withdrawals and it can be awful but I doubt tramadol withdrawal is as bad as oxy, morphine, or heroin. Good luck!


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## Mountaingem

I haven't gotten addicted but I can certainly understand how it happens. I feel so good without the constant pain when I take Dilaudid that I'll find myself reaching for it even after the flare improves. I keep a sticky note on the bottle to remind myself not to use it unless I'm in pain; it sounds stupid but I need the wake-up call.


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## KWalker

Does anyone know how many percocet I can safely take in a day (the absolute most)? I'm having surgery next week and in a lot of pain so the doctor prescribed me 40 tablets which I have to try and make last till Monday which should be okay. On my bottle it says take 1-2 EVERY 4 hours but I tried looking online (which is useless) to find out how many I can safely take in a day and one link said a max. of 6 a day!  If I were to take 2 every 4 hours that wouldn't even get me half way through the day before I reach 6. 

It actually just reached my 8th hour since starting them and I just took my 3rd percocet which is actually under the 2 every 4 hour rule but if the max is 6 I need to figure something out to get the pain relief without worrying about the liver damage. 

Any opinions?  Thanks guys!


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## Mountaingem

Sorry I don't have the info on Percocet-I do know more that six will cause liver damage, but it varies from person to person as to how quickly that happens. I would say you need a stonger painkiller like Dilaudid if you are still in that much pain. Maybe the dr. will give you a scrip since your having surgery anyway.


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## JohnnyRottenAppleseed

Percocet has acetaminophen which causes liver failure in high doses especially when combined with alcohol.


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## KWalker

I know that, but was wondering the max I can take in a day...and I am way too much pain to be drinking alcohol right now haha. I only ever take 2 percs at a time every 4 hours (prior experience) but I just needed to check because in the mean time before surgery I'll be trying to go to school the rest of the week. If you've ever been to University they use the cheapest/hardest chairs you could possibly ever sit on so if I'm going to sit through consecutive 2 hour lecturs, I need to make sure its going to work. 

Also, is there a thing called a "breakthrough"? Apparently its a time when the percs are now in your body enough that you could start taking 1 perc and supplementing the other for an extra strength tylenol (500mg) or extra strength Ibuprofen (500mg)?  I have both so which one would be better to use with the percs but also in exchange for the percs so I can make them last. 

Thanks for the help!


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## JohnnyRottenAppleseed

I'd avoid the acetaminophen and ibuprofen as that is what hurts your liver, not the oxycodone component of the Percocet . Smoke some weed if you have it or get a pure opiate so you can take a higher dose.


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## betteroff

Hello to all of you. I have been on fentnyl, dilaudid, MScontin, oxycodone, and Demerol in the past. For me personally the opiate meds caused more suffering than they alleviated. The doses had to be increased consistently because of tolerance. Before I started using narcotics for pain I had no idea of the addiction possibilities. No one explained it to me. I just could not stand the pain. I have had so many bowel surgeries that I barely digest any food and don't want any more taken out of me. Anyway, I became physically and mentally addicted to opiates and it was what I think of as hell. I did not have any idea that this may happen before starting them.

I judge no one when it comes to this subject. No one would knowingly go into this if they knew the possible outcome. I now have permanent brain damage and depression. I would use these drugs for short term pain only knowing what I now know. I had to go through detox no different than a heroin addict. There is no difference in the withdrawal symptoms. I would not wish it on my worst enemy. I do know that many people have had many different experiences with pain meds and everyone is different. 

I now use cannabis oil to combat the symptoms and pain from the disease. For myself it works better than any other medication that I have tried. it is not addictive and his few if any undesirable side effects. I have discussed it with my doctors and surgeons and they agree that I should use it. It has become a quality of life issue for me. Before trying the oil, I was in the bathroom up to 30 * per day, the frequency was reduced 2 between 3 and 5 * per day and the pain is under control. I have no nausea or reflux and can eat almost anything I want 2. My appetite has increased and I have gained some weight. So far, the side affects have been a feeling of peace and positive attitude. I have been on Social Security disability and actually feel good enough to try working part time, but cannot get a job because of the very same medicine that might allow me to work again.

this happened overnight and is a miracle for me. It has allowed me to actually leave my house without the constant anxiety created by the need to find a bathroom. nothing is right for everyone but for me this was the answer.

I have used Remicade, Humira, and Cimzia. All three of the biologicals that I have used caused severe infection that required more surgery. I developed something called MRSA in my bloodstream. That nearly killed me. My doctor has taken me off of the biologicals. I have taken so much prednisone over the past 35 years that my bone density is that of a 90 year old man and my immune system is shot. I have found marijuana to be a safer and more affective medication for me.there have been many studies in Israel regarding the affectiveness of cannabis on inflammatory bowel disease with positive results. The truth about this plant slowly being realized by the scientific community. Before I really looked into it I did not know much about this plant. Much of what I had heard turned out to be untrue. Pharmaceutical companies do not want the effectiveness of this medication to be known. If people could grow their own medicine, pharmaceutical companies would lose money.

If I could be a public advocate for this cause, I would, but without it I am useless to anyone. I would not receive this medication in prison. I flew to Portland and got my Oregon State medical marijuana card as well as Washington state. Currently, I do not live in a state that is legal so technically I am a criminal here. I am classified as a criminal for using a medicine that allows me to have somewhat of a life. it is changing slowly but has a ways to go.

Thank you for reading my post. I hope that others find some relief from this nasty disease any way they can.


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## UnXmas

I'm not sure how many people check this thread, but I thought I'd add to it.

Codeine works really well for me. I do become tolerant really quick - i.e. need to take larger amounts to get the good effects - but I've been able to make sure I keep it for "as needed." There was one period where I tried just taking it every day, then found I'd go into physical withdrawal without it, and learned my lesson. The withdrawal was easily bearable though - just felt like having flu and feeling miserable. I wasn't compelled to go seeking out codeine even after I'd told myself I wasn't having it or anything like that.

It just works for me in ways that other pain killers don't. Especially since Ibuprofin and Aspirin upset my stomach - and don't do much good! Paracetamol does nothing when I have pain, and it makes me feel sick. It seems I'm just someone who responds to opiate (opioid?) drugs. I've had morphine (the same type of drug as codeine) - only while in hospital of course - and that makes me feel a little too good.  

I can see how one could easily develop a mental addiction to the high of morphine. Codeine's effects on my mood are too subtle for me to call them a high though. The side effects list "euphoria," but for me it's more a kind of calmness, like everything seems a little bit easier to deal with. That effect doesn't happen when taking on a regular basis and tolerant though. So now I keep codeine for when I feel really rough, and then make sure I give it a while before I take it again.


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## long time crohnie

Thought I'd write in on this subject since I am going through the vicious cycle of pain from CD and withdrawl pain from years of being on dilaudid and fentnyl patches. I had been seeing a pain specialist for years and I have tried every drug under the sun to help ease the pain. Let's face it, opiates are a great way to relieve pain and D. Opiates react very positivly in a GI track that is prone to chronic D, like I have. Unfortunatly, your body becomes addicted to them and requires more and more to get the desired effect after a while. I was never mentally addicted, I think it just became a habit to take them whenever I felt any pain coming on, hence my body required more and more as time went on. Problem: vicodin(codine), percocet and oxy all have acetominophin and are bad for the liver if used for long periods so I avoided those (also they made me feel drugged and I don't like that). Told that drugs like Dilaudid a "clean" drug(no fillers) was more effective and has less side effects on the liver etc. But they are short acting so need to take more often, like every 4-6hrs. Because oxycontin, pentasa and exalgo are extended release they can last longer and not have to take as much, but I just poop them right out. They never get a chance to break down in my short GI tract(I can't taker any extended release meds for this reason). So I was put on a transdermal fentnyl patch for any break through pain. These worked great, for a while until my GI doc couldn't find any "active" CD and thought I may have what they call narcotic gut syndrome. (Thats when opiates begin to cause symptoms instead of relieve them.) After reading up on this I didn't think that was the case but my pain doc jumped on it to get me off of everything. So I did, and used Subutex(Suboxone without naltrexone in it) for withdrawl. After 4 mos of weaning, I was done, but all my symptoms came back; severe cramping and bloat, horrible D, fatigue, lack of appitite. Was given dicyclomine and lomotil...did nothing. Went through the battery of tests and have found no "active" CD, which is good but not helpful to get to the bottom of this. I had to seek the ER for IV fluids and IV dilaudid, and it put me right back to where I started!!! The docs were very kind, they told me it wasn't my fault( i never left the hospital w a script for meds) but was the medical profession and having a very difficult disease to treat fault. I needed to accept that narcotics are a blessing and a curse to the gut. I basically reactivated my pain receptors and they screamed for more drugs and my body did the same. It was very discouraging. So now Im back on a small dose of Subutex, which does help, but what is the difference? My body will either be addicted to opiates or an opiate agonist? Both cause with drawl when stopping them and my continues on. I haven't worked in 4yrs ( I used to be a drug and alcohol counselor, but was too stressful of a profession for me) I'm depressed and lay on the couch or sit in the bathroom most of the day. My quality of life is diminishing but I will carry on.

Im now taking azathioprine; wellbutrin and lexapro for depression; nexium for reflux and hiatal hernia; and donnotal and valium for bowel spasm and pain. We'll see what happens. Im in the process of giving a 72hr stool collectionto see if they can find out anything there.

Bottom line, I dont know what to do re pain relief anymore. No doctors will give me pain medication anymore, and after all of this i don't know if I want them, so I will need to deal. Pot does help with some of the symptoms, but hate the fact that I could get busted for using a drug that should be legal!(it's not in my state) Maybe the government will wake up to how bad the opiate problem has become and begin to use a drug that doesn't reek havoc on our bodies and isn't physically addictive? NOT!! 

Sorry for the babbling, but life has got to be better than this! Sad thing is, I know I will need opiates again someday and will need to do this process over and over again. I guess it just a part of dealing with chronic pain in a medical society that can't decide if people should have pain relief or worry about those who really need it and the federal regulations these pain docs are having to deal with. Forgive me if I didn't make a lot of sense, Im on little sleep for too long now :sign0085:


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## JohnnyRottenAppleseed

Try eating the cannabis. Cook it into butter then make cookies or with food or just eat a few tsp butter


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## ke22y

I have MS, and it came first, then Crohn's came last year in June. I have been told that having one autoimmune disease, makes it easier to get another. I feel like, no, I know I am addicted to pain killers. I have been taking them non-stop for over a year, every since I got out of the hospital in July of last year. It is horrible, the whole situation, the Crohn's, MS, and the other, which is incredibly shameful to me.


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## Jenny06xx

This thread is so helpfull for everyone to read coz 1 day we will all be in a situation where pain meds may be needed on  a regular basis .

At the moment my dihydrocodeine usage is waaay too high I know this but my gp keeps telling me to take extra till I see a pain specialist , so what else can I do ?

I try hard not to take the extra meds an stick to 3 x 120 mg slow release dhc and 8x30 mg instant release dhc a day but on really bad days I have to take extra for any relief which I know is a terribly high amount !!
I dont get high or anything just pain relief , it will never give the same effect as that   "first ever pill " did no matter what amount I take .
An that's not what I use them for ! I legitimately need pain relief and until I see a pain doc it is my only choice 

I hate being a slave to my pill , panicking when my next script is due , worried if I've put them somewhere an can't find them , waking up thinking have I got enough to last today?

It's an awful cycle but Id rather be a slave to the pills than at home not able to manage in agony with no pills an down the hospital every 5 mins !

I suppose it's my choice an I've chosen pills , that is because my life would not be worth living without them .
Jen xx


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## UnXmas

long time crohnie said:


> Problem: vicodin(codine), percocet and oxy all have acetominophin and are bad for the liver if used for long periods so I avoided those (also they made me feel drugged and I don't like that). Told that drugs like Dilaudid a "clean" drug(no fillers) was more effective and has less side effects on the liver etc.
> 
> 
> 
> 
> 
> 
> This must vary in different countries. In the UK, if you buy codeine over the counter - i.e. the customer chooses it, rather than being given out by a professional - the codeine is always mixed with paracetamol (acetominophin). I read that the only reason they put the paracetamol in there is to prevent people using codeine for the wrong reasons - if you take a large amount, the paracetemol will make you feel sick, so people will not be able to take large amounts and get high of the codeine. But doctors prescribe codeine without paracetamol or anything else added. With the extra control involved where the dosage is being monitored by a doctor, they must think it's safe enough to prescribe like that.
> 
> long time crohnie: sorry you've not been able to come up with a solution. It is difficult that there just doesn't seem to be a solution for pain that doesn't have negative consequences - whether unhealthy side effects or addiction. Especially when pain is chronic. I suppose I can see why the medical profession finds it hard to know what to do a lot of the time as well. I'd never heard of "narcotic bowel syndrome" before. As I wrote in my post above, I've taken a fair amount of codeine for the past year or so. It still seems to be beneficial for my bowels - the only effect is the one that's desired because I have chronic diarrhoea. The main problem I have with other non-addictive types of pain meds is they always seem to upset my stomach (in the short term). I hope you find some relief soon.
Click to expand...


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## Jenny06xx

I have the same problem with non narcotic painkillers , they all upset my stomach an cause more problems , so my only option is opiate medication .
I also have the chronic diarrhoea even when I'm really well so the added side effect of constipation is great for me ! I recently reviewed my medication with my gp , an she actually said ( we were going to change to oral morphine but I really didn't want to at the time )
 " keep taking the dihydrocodeine we won't swap that as it helps with your diarrhoea 
aswell doesn't it "

It's an added bonus for me an if I'm honest I'd be buggered without itbecause immodium has always been so hit an miss for me , 1 day 2 would do the job, the next day 14 wouldn't touch me but then I'd be backed up the next 2 days !

My life before codeine was first prescribed ( for diarrhoea not pain ) was awful I couldn't leave my house , I'd just had a baby an couldn't drive at the time an honestly I really think My life wasn't worth living at the time I seriously couldn't manage , I had to take my baby up on the bathroom floor because I would be up there sooooo long an couldn't leave her downstairs .
That's a horrible memory of my undiagnosed days .

I don't know where I'd b now if it wasn't for codeine an other narcotic / opiate type meds 
So even though I know I'm " dependant " on dihydrocodeine now , I'm grateful for the life it has given me !

Jen xx


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## UnXmas

The thing with opiates is that they work so definitively. 

Once a doctor tried to get me to switch from using codeine to paracetamol. I told her paracetamol does nothing for me. She told me that it might be reducing pain without me noticing.

That made no sense to me. Did they do a research trial and managed to find a way to measure patients' pain even when the patients' themselves didn't notice?  I get what she was saying really - she meant that paracetamol could reduce the pain a bit, so you're still in pain but not as much as you would have been if you hadn't taken anything.

But I'm at a point where I don't care about effects that are that subtle. I used to worry about long term health risks and avoid medication but now I view my long term health as a lost cause and just want to feel as comfortable as possible. When I have so many symptoms deterioriating so fast (not just pain), trying to counteract them with subtle changes doesn't stand a chance. There'll be too many new symptoms and the deterioration will be too fast, and finding ways to counteract them at that rate will mean there is an inevitable decline in quality of life. The only chance is to find things that work strongly and quickly.

Codeine consistantly makes me feel better - I know it's not coincidence or another factor - and it makes a difference that is noticable.


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## Jenny06xx

Yep i think it cones down to personal choice on the end , to take opiate medication an become dependant an have a normal quality of life with crohns and other illnesses or to take non opiate meds ie paracetamol / Tylenol  etc an have a less than normal quality of life but not be dependant on opiates .

But then every med works differently for ever individual person , an what works for sone may not work for others !

If I was just handed codeine now an only ever taken say paracetamol I would think it was
a miracle tablet ! 
Yet on the high doses of dhc I'm on it would be a case of , it lessens the diarrhoea but does nothing for pain .
So I know I need to get off dhc I don't want to be on it an I'm hoping that next year will be a good year an that will be a possibility!
It will be a long hard slog of withdrawal but I'd sooooo love to be opiate free , although I'm happy to continue taking them if I have the need them.

At the end of the day if you have a headache you try to fix it with tablets cold patches whatever , if you have a bad back you go to see someone who specialises in that area an take what is offered to help or fix it, so if you have crohns you see a specialist , you take the treatments offered an you try to get into remission , so if the painkillers offered are opiates an they're the thing that works for you take them an don't feel guilty about taking them , they're part of the package to get you into remmission .
Jen xx


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## UnXmas

Jenny06xx said:


> Yep i think it cones down to personal choice on the end , to take opiate medication an become dependant an have a normal quality of life with crohns and other illnesses or to take non opiate meds ie paracetamol / Tylenol  etc an have a less than normal quality of life but not be dependant on opiates .
> 
> But then every med works differently for ever individual person , an what works for sone may not work for others !


This is so true: it's just finding if it's ok for you. If you have a tendency for addiction and taking drugs for the wrong reasons, then that's different to the inevitable physical dependency of long-tem opiate use. Physical dependecy can be problematic, but is not the same as a mental addiction or sign the drug is necessarily being abused.


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## Sherrod

Skinsfan1229 said:


> I see you have narrowing areas I can see why you wanted want to take but so much narcotics, because it slows your bowels and can make you constipated. But I believe that most of us have diahrea and not constipation, I realize some do though.
> 
> For me I can take say 1 or 2 vicodin a day and it will slow my bowels so that I am more formed...which helps a lot considering I have an ostomy.
> 
> I was going to offer up that you should ask about something like levsin, an anti-spasmadic instead of pain killer.
> 
> Do you ever go to the ER GNC crohns man? The reason I ask is because almost 100 percent of the time if your in pain they are going to give you a narcotic, atleast in my experience, they've never given me something that isnt.
> 
> 
> 
> other forums we've actually had a discussion of the "narcotic energy", might be a good thread to start...



I have diarrhea with mine and I find the slowing affect of narcotics and the energy extremely helpfull and it helps with the pain.  There are really only two classes of major pain med- NSAIDs and narcotics and I cannot take NSAIDs so that leaves Narcotics.  Oddly enough though my body does not metabolize codein or morphine so I have to go with other things like tramadol or hydros or percs...:smile:


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## JohnnyRottenAppleseed

Why don't you UK folk get in Sativex? I'd rather be addicted to sativex than opiate pain killers.


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## Liesia

Hello Long time crohnie,  has your GI doc done biopsies during a colonoscopy.  It sounds like you could have Lymphocytic or microscopic colitis.  The colonoscopy appears normal and you can only find it by biopsies of the tissue.  There is usually no bleeding involved.  There has not been as much research on it as crohns and UC and usually it is treated the same as crohns but at least you would have a DX and know what you are dealing with.  It is also painful.  I see you are on Wellbutrin, that helped me with my pain, it is a TNF inhibitor but does not have the side effects as a biologic.  Good luck I hope you find out soon and get some relief.


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## JohnnyRottenAppleseed

I love all these fancy names for inflammation of the bowels. No name, no snake oil!!!$$$$$$$$$$$


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## Dixiedoll23

Sherrod said:


> I have diarrhea with mine and I find the slowing affect of narcotics and the energy extremely helpfull and it helps with the pain.  There are really only two classes of major pain med- NSAIDs and narcotics and I cannot take NSAIDs so that leaves Narcotics.  Oddly enough though my body does not metabolize codein or morphine so I have to go with other things like tramadol or hydros or percs...:smile:



I don't think most people who have crohns can take NSAIDS? I know my GI said it was a no-no as it can cause a flare or make a flare worse.So that leaves opiates for us.I find it to be much safer to use opiates that are tylenol/ibuprofen free, especially if used for long term.

I also agree with opiates helping diarrhea.If I'm not on pain meds for a day,I might as well sleep in the bathroom and put a TV in there, because that's where I'm spending the day.After all, that is what immodium is.Originally prescribed for pain until they realized it didn't cross the BBB.
I find the energy to be helpful too, especially since crohns makes me feel so lazy all the time, but I have chronic fatigue syndrome.However after being on opiates for a long time, that energy doesn't last long, and I find myself having to take pills just to feel "normal" everyday.
I like Tramadol because it seems to last about 6 hours compared to 3 or 4 tops that the other meds last me.But I've had my experience with pretty much all of them at one time or another.


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## HospitalPatient

Re: Pain Meds, Narcotics and living with a Chronic Disease like Crohn's, below is a respectful 7-minute Video "Retort" I produced in response to CNN's & Dr. Sanjay Gupta's recent show "Deadly Dose," which revealed the growing tragic problem of narcotic/opioid prescription drug overdoses.  The perspective is that of a chronic pain patient (with Crohn’s Disease) who is worried about new laws addressing this tragic problem but over-reaching in doing so, and thus, "throwing out the baby with the bath water," and making lives of many chronic patients, with Crohn's, MUCH more difficult. 
https://vimeo.com/60614617


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## UnXmas

Dixiedoll23 said:


> I don't think most people who have crohns can take NSAIDS? I know my GI said it was a no-no as it can cause a flare or make a flare worse.So that leaves opiates for us.I find it to be much safer to use opiates that are tylenol/ibuprofen free, especially if used for long term.
> 
> I also agree with opiates helping diarrhea.If I'm not on pain meds for a day,I might as well sleep in the bathroom and put a TV in there, because that's where I'm spending the day.After all, that is what immodium is.Originally prescribed for pain until they realized it didn't cross the BBB.
> I find the energy to be helpful too, especially since crohns makes me feel so lazy all the time, but I have chronic fatigue syndrome.However after being on opiates for a long time, that energy doesn't last long, and I find myself having to take pills just to feel "normal" everyday.
> I like Tramadol because it seems to last about 6 hours compared to 3 or 4 tops that the other meds last me.But I've had my experience with pretty much all of them at one time or another.


I thought the same about NSAIDs - they make me feel a bit sick and don't do much for my pain either.

You get energy from opiates? I always feel so much more energetic after taking codiene, but when I told my GP she said that was surprising as it's supposed to be a sedative. She thought that the fatigue I feel when I've not taken any codeine was withdrawal, but after months with no opiates at all I concluded that I actually do get bursts of energy from codeine. I take regular breaks off codeine to avoid building up too much tolerance, so I can still get the energy, pain relief and anti-diarrhoea effects when I need to.


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## aleciabc09

xrayzerase said:


> i was just wondering if anyone else here has experienced getting addicted to a pain med? (like codeine)-and-if so--what do you use for pain now? (if anything)
> i got addicted to tylenol 3's (tylenol w 30 mg codeine). i had been taking them for awhile then-(starting with shingles-one small nerve was in pain along eye--but-that one little nerve caused enormous pain-worse than my migraines)
> then-i started using it for migraines til i got hooked. anyway-now-at times-i still get headaches. i am seeing maybe dehydration can maybe be in part what at least triggers a migraine..i don't know. but..the migraine meds scare me (as i am already on other strong meds)
> the crohn's stuff -i worry if i feel pain again: well--what do others do? if in pain -and if not able to take narcotics? just deal? so far -i don't need anything for the crohn's-(though the heartburn is hard to cope with--at least the diarrhea almost gone-(still have quite a few bm's a day tho) -and some ab discomfort.
> just-sometimes i wonder if the shingles/crohn's and endometriosis -and even migraines-all somehow relate (immune trouble)--(sorry-guess that is another topic)
> but my key thing: it seems that if one has one crohn's-it tends to involve other stuff too (like headaches..and other messes--which= sometimes: pain) just..really wish i could take a pain pill at times (legitimately need one sometimes..)


 I also had issues with addiction to pain meds for Crohn's artheritis and lots of other health stuff so am no longer taking anything accept tylenol and am in a flare, I have leaned a very hot bath helps a lot and just doing something when I am in pain helps me not think ablut it, Good Luck to you!


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## BabsToo

YES!  A hot bath with epsom salts every day is what let me get off my pain meds.


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## JohnnyRottenAppleseed

Studies and my own personal experience show Cannabis has the analgesic equivelant to Vicodin without the addictive properties.


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## Dixiedoll23

UnXmas said:


> I thought the same about NSAIDs - they make me feel a bit sick and don't do much for my pain either.
> 
> You get energy from opiates? I always feel so much more energetic after taking codiene, but when I told my GP she said that was surprising as it's supposed to be a sedative. She thought that the fatigue I feel when I've not taken any codeine was withdrawal, but after months with no opiates at all I concluded that I actually do get bursts of energy from codeine. I take regular breaks off codeine to avoid building up too much tolerance, so I can still get the energy, pain relief and anti-diarrhoea effects when I need to.


Yeah, NSAIDS aren't very effective for me at least, they really have a tendency to tear my stomach up.
Opiates are supposed to be "downers" but I do get energy from them.However, I need to be cautious with them, since they take the pain away sometimes I find myself doing more than what I should be doing, and can therefore hurt myself more if that makes sense.
I believe codeine is a form of opiates.I like using the term opiates instead of narcotics, as narcotics can mean everything including cocaine and other drugs where as opiates are only refering to pain medication.
I'm glad the codeine seems to be helpful for you, that is one pain med that I didn't care for.It tore my stomach up,maybe that's because of the tylenol in them? I've always preffered pain meds like oxycontin that is tylenol free.


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## UnXmas

Dixiedoll23 said:


> Yeah, NSAIDS aren't very effective for me at least, they really have a tendency to tear my stomach up.
> Opiates are supposed to be "downers" but I do get energy from them.However, I need to be cautious with them, since they take the pain away sometimes I find myself doing more than what I should be doing, and can therefore hurt myself more if that makes sense.
> I believe codeine is a form of opiates.I like using the term opiates instead of narcotics, as narcotics can mean everything including cocaine and other drugs where as opiates are only refering to pain medication.
> I'm glad the codeine seems to be helpful for you, that is one pain med that I didn't care for.It tore my stomach up,maybe that's because of the tylenol in them? I've always preffered pain meds like oxycontin that is tylenol free.


I get my codeine on prescription so there's no paracetamol (the UK name for the ingredient in tylenol) in it, it's just pure codeine. In this country, if you buy it over-the-counter rather than on prescription, it's always got paracetamol in. The packaging blurb makes it sound like the paracetamol is there for its own pain-relieving properties, but I've heard it's actually there to keep people from getting adicted, because if you take enough codeine to feel "high," you'll feel sick from the paracetamol, discouraging you from overdosing again.


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## SusanB

Hello, I am addicted to dilaudid. I was in the hospital for two years, more on than off and recently cane home after almost 6months. I am home with sub Q dilaudid due to pain of Imuran. But before that we were weening me off from 4ml every two hours to 2.5 every 4 hours! So I'm pleased we are making some kind of progress. Of course than along comes the pain again. It's tough getting your body not to crave something its had for so long. I wouldn't wish it on anyone 
Susan


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## TheyCallMeRC

Well, I was one of the people that heard dont start prescription pills cause you will get addicted and I didnt want to hear that because I was in pain and it couldnt happen to me.

Well after 4 years of going to a pain clinic I was prescribed (5) 30mg oxycodone a day and (3) 100mg morphine sulfate a day. I was taking double that at my worse point because they just wouldnt help anymore because I became tolerant to the meds. I would go to the ER and was still in agonizing pain after 6mg dilaudid in an hour. Went to rehab 3 times.

It is hard for me to say to stay away from these meds but I would advise be open and honest with your doctor and ask every question you can ask. Ask what the meds are going to help you with and can you get dependent on them and what will they do if that happens.

also, go to a legitimate pain management doctor and not a shopping center pill mill. Those doctors give you scripts for cash and you will end up addicted by using them. A true pain specialist will use medicines and other treatments to help your pain.

one piece of advice or just my .02 worth: don't go to anyone expecting for your pain to totally go away. This may happen for mild pain but for severe crohnic pain, you need to just search for a better quality of life and try to do other things to help along with the pills and dont rely on them alone.

I didnt put everthing in here because I could write a book,but if you are struggling and want more advice then feel free to PM me and I will be glad to help.


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## gamerfanman

While in hospital for severe crohn's last year I was prescribed a strong pain killer called tremadole. I would take one about 10pm and it allowed me to sleep until about 2 or 3 am. Without it I was up every 15-30 min or so on the toilet Which resulted in severe cramping pains. I had the pains and BM all through out the day too but was only prescribed one pill per day so I would prefer to take it when I wanted to try and sleep. Even then, the nurses would try to talk me into taking just a panadol. I guess I felt kind of addicted but I was like a fear of what its like to not take it and struggle through the night. I was in there around 2 months and was still having terrible cramping and BM for about two weeks after being released. So far, they have been the worst two and a half months of my life, But its early days yet.. :lol:


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## long time crohnie

TheyCallMeRC said:


> Well, I was one of the people that heard dont start prescription pills cause you will get addicted and I didnt want to hear that because I was in pain and it couldnt happen to me.
> 
> Well after 4 years of going to a pain clinic I was prescribed (5) 30mg oxycodone a day and (3) 100mg morphine sulfate a day. I was taking double that at my worse point because they just wouldnt help anymore because I became tolerant to the meds. I would go to the ER and was still in agonizing pain after 6mg dilaudid in an hour. Went to rehab 3 times.
> 
> It is hard for me to say to stay away from these meds but I would advise be open and honest with your doctor and ask every question you can ask. Ask what the meds are going to help you with and can you get dependent on them and what will they do if that happens.
> 
> also, go to a legitimate pain management doctor and not a shopping center pill mill. Those doctors give you scripts for cash and you will end up addicted by using them. A true pain specialist will use medicines and other treatments to help your pain.
> 
> one piece of advice or just my .02 worth: don't go to anyone expecting for your pain to totally go away. This may happen for mild pain but for severe crohnic pain, you need to just search for a better quality of life and try to do other things to help along with the pills and dont rely on them alone.
> 
> I didnt put everthing in here because I could write a book,but if you are struggling and want more advice then feel free to PM me and I will be glad to help.


Excellent advice and very true! Nothing will take away all the pain. I'm been off of opiates for 1 1/2 yrs. was on mass doses for years as well. That was the hardest thing! Our bodies get so addicted. Now i go to the er when the pain gets unbearable. Just found out i have inflammation throughout my colon from a CT i received last night from an ER visit. I've been in remission for years so quite surprised and pray no surgery. I dont want to get back on all those opiates again!


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## long time crohnie

Regarding addiction: You can be psychologically and physically addicted.  No matter who you are or what your pain is, if you are on long term opiate medication, which includes codeine, your body is physically addicted and does make the pain worse due to with drawl and increased tolerance. It sucks, but its the truth. If you are seeking a high, or using it to make you feel not so depressed, or going to different drs to get the medication, then you are psychologically addicted and most likely physically as well. This is one of the side effects of our disease. We do have valid pain and will need some relief at times, sometimes long periods of time. But do have an aware doc that is strong enough to wean you off if you appear to be ok medically. Its a vicious cycle but sometimes unavoidable...


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## UnXmas

long time crohnie said:


> Regarding addiction: You can be psychologically and physically addicted.  No matter who you are or what your pain is, if you are on long term opiate medication, which includes codeine, your body is physically addicted and does make the pain worse due to with drawl and increased tolerance. It sucks, but its the truth. If you are seeking a high, or using it to make you feel not so depressed, or going to different drs to get the medication, then you are psychologically addicted and most likely physically as well. This is one of the side effects of our disease. We do have valid pain and will need some relief at times, sometimes long periods of time. But do have an aware doc that is strong enough to wean you off if you appear to be ok medically. Its a vicious cycle but sometimes unavoidable...


Very true. It took me a while to understand that although I wasn't psychologically addicted, I was physically addicted/tolerant. Without the psychological addiction, it was possible to stop them - I had the will power (or whatever you'd call it) to make myself stop taking them, but physically my body wasn't happy about it!


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## armen

Earlier study, published in European Journal of Pharmacology said resveratrol improves IBD symptoms too.


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## UnXmas

Well, during my hospital stay following surgery a couple of weeks ago, I got a rapid detox from codeine. I couldn't have any opiates as they didn't want risk slowing my digestive system down. I was feeling so incredibly sick anyway that I couldn't say whether I actually went into withdrawal or not. But anyway, now I'm off codeine completely, and plan to stay that way for a while. I will use it again when things get bad, but I'm going to make the most of being off of it for a while.


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## long time crohnie

Wow UnXmas that had to be tough! Recovering from surgery and detoxing as well? Sounds kinda irresponsible on their end to go thru that at the same time. Hope they gave you something to ease the process. Happy to hear you're off of them tho and pray the results of your surgery are positive! The one big benefit of opiates, for me anyways, is it is the only thing that stops my chronic D! Trying to stay off all of them too! Good luck!!


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## UnXmas

long time crohnie said:


> Wow UnXmas that had to be tough! Recovering from surgery and detoxing as well? Sounds kinda irresponsible on their end to go thru that at the same time. Hope they gave you something to ease the process. Happy to hear you're off of them tho and pray the results of your surgery are positive! The one big benefit of opiates, for me anyways, is it is the only thing that stops my chronic D! Trying to stay off all of them too! Good luck!!


They didn't really have a choice - my digestive system became temporarily paralysed as an unexpected complication of the surgery, so they couldn't risk anything that would slow it down further and took me off codeine and significantly lowered my dose of Amitriptyline, which is also constipating. I was more upset by the Amitriptyline reduction as it also causes withdrawal and in particular insomnia - I had awful awful nights in the hospital, though I'm not sure whether that was just the Ami withdrawal, as I always sleep badly after surgery. I'm back on my usual Ami dose now and sleeping very well again. I've no idea how sick withdrawing from codeine actually made me or how much of the sickness was from the surgery and the intestinal paralysis. 

There wasn't really any alternative they could give me, as all opiates slow digestion. They did give me paracetamol for pain relief, though I've never found that actually helps me with pain. When I was in real agony from the paralysis, they gave me some anti-anxiety drug because I was so distressed - which made the pain bearable... for about an hour. Then it wore off and I started asking for more. A doctor told me I couldn't have any more because it's highly addictive. I was so desperate I was begging them to give me something for pain. My mum told me that the doctor had got worried when I started begging for this addictive medication, and had told my mum she hadn't realised I'd respond like that - which didn't give me a good opinion of the doctor. She makes my pain bearable for an hour - what did she think I'd do when that hour was over?! 

After a couple of days of agony, a nurse realised what was wrong with me, and they put a tube into my stomach and pumped out all the bile that was stuck there, unable to move through my paralysed digestive system. That - fixing the _cause_ of the pain - gave me more relief than any medication could have given me.

I think the codeine detox was hardly noticeable in the midst of all that.


----------



## long time crohnie

UnXmas, that sounds like a horrible ordeal to go thru! What's strange is that that your doc was surprised of your wanting pain medication. You just had surgery! Of course you'll have pain w or w/o the withdrawl!! Sometimes I think docs need to go on this forum and peruse a while and really find out what we all go thru. I was recently up at the ER for pain relief, cause my docs wont't prescribe anymore, and thru a cat scan xray found my colon and rectum were inflamed. My GI doc put me on Prednisone and Amitriptyline. 3wks later he checks my colon and finds NO crohns or colitis!?! Now Im all blown up and feeling crappy w all other side effects from pred and didn't even need it?? He has no idea what happened except that possibly my colon was spasming and was contracting at the time. I have had persistant symptoms for years and they  never find a crohns relapse. I just don't get it?

Anyway, I am happy to hear you are on the mend and no longer in such pain. Addictive or not, sometimes we need relief. This disease sucks!!


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## UnXmas

long time crohnie said:


> UnXmas, that sounds like a horrible ordeal to go thru! What's strange is that that your doc was surprised of your wanting pain medication. You just had surgery! Of course you'll have pain w or w/o the withdrawl!! Sometimes I think docs need to go on this forum and peruse a while and really find out what we all go thru. I was recently up at the ER for pain relief, cause my docs wont't prescribe anymore, and thru a cat scan xray found my colon and rectum were inflamed. My GI doc put me on Prednisone and Amitriptyline. 3wks later he checks my colon and finds NO crohns or colitis!?! Now Im all blown up and feeling crappy w all other side effects from pred and didn't even need it?? He has no idea what happened except that possibly my colon was spasming and was contracting at the time. I have had persistant symptoms for years and they  never find a crohns relapse. I just don't get it?
> 
> Anyway, I am happy to hear you are on the mend and no longer in such pain. Addictive or not, sometimes we need relief. This disease sucks!!


It wasn't my regular doctor who gave me the anti-anxiety medication; my surgeon, who is brilliant and has known me for years, got sick the day after he operated on me, so the doctors who ended up treating me during the recovery were not specialists, they were just the doctors who happened to be on-call on the surgical recovery wards.

I wouldn't have needed so much pain medication if it weren't for the ileus (intestinal paralysis). It wasn't supposed to be a particularly painful operation. The first couple of days after surgery, I felt quite good, and the plan was I'd go home after two or three days. But then I developed this ileus. They couldn't diagnose it for a couple of days, because I wasn't vomiting, which is usually the main symptom. The reason I was left in such agony was because of the delay in diagnosis. Once someone figured out the diagnosis and they pumped my stomach, I had some pain, but not so much I couldn't handle.

Are you able to get off the prednisone now? I remember the side effects righted themselves pretty fast once I was off it.


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## long time crohnie

Im still weaning off of the prednisone, now at 20mgs. Doc has me on 50mg of amitriptyline, 100mgs Imuran, and now trying levsin (hysocalimine) for bowel spasm and chronic D. If that, the levsin, doesn't work other options are donnatol (belladonna) or codine sulfate. Sx doing well at the moment. But Im constantly tired. Hopeful to be done w prednisone by the holidays. Then I can really see where I am at. Hope all is well w you all. I wouldn't have gotten thru all this without this forum


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## Amaze

No Doctor will prescribe me pain meds no matter how much pain im in


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## Amaze

every time I tell a doctor Im in pain they look at me like im lying. wtf? I got a chronic disease with no cure but no one believes me when I say im in pain.


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## JohnnyRottenAppleseed

You can thank the doctors, big Pharma, and addicts for lack of access to pain meds.


----------



## UnXmas

Amaze said:


> No Doctor will prescribe me pain meds no matter how much pain im in


What type of pain do you have? Have you ever been prescribed pain meds in the past? Have you tried any over the counter brands? 

Doctors have to be wary about prescribing anything addictive for chronic pain, and sometimes taking certain pain meds when you have bowel problems carries risks; some painkillers irritate the stomach, others - opiates in particular - slow the digestive system and can lead to blockages, and aren't always considered safe with Crohn's disease. 

Do you know the reasons why your doctors won't prescribe anything for you? If you can discuss the reasons with them, you may be able to find a solution.

It can be very difficult for doctors to find pain relief in some cases though. I was in hospital recently and was in agony, but as the cause of my agony was that my digestive tract was paralysed after surgery, there was no way they could let me have opiates. In the end the only way to end the pain was to go to the source of it; they pumped out everything that was stuck in my stomach, and the pain was eased without using any type of painkiller. Have your doctors looked for the specific cause of your pain to see if there is something that can be treated? 

If the cause is not fixable and the pain is chronic, have you asked for non-addictive painkillers, ones you can't build up a tolerance to? Have you tried methods of pain relief besides medication? Sometimes simple things can be surprisingly effective. A hot water bottle for stomach cramps, for example, relaxes the muscles and can really ease that type of pain.


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## JohnnyRottenAppleseed

Amaze said:


> every time I tell a doctor Im in pain they look at me like im lying. wtf? I got a chronic disease with no cure but no one believes me when I say im in pain.


Find a pain management clinic/doctor. What is causing your chronic pain? I would address the cause. I was addicted to pain meds and now use cannabis and aspirin (rarely). My friend had hand Surgury with pins no anasthesia only cannabis and ibuprofen. He too was addicted to pain meds. Be very carefull.


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## long time crohnie

Unfortunately JohnnyO, most states still consider cannabis as illegal and therefore hard to obtain. 

Amaze, I truly feel for u and your pain. The medical profession is to blame. They over prescribed pain meds (opiates) and created a big addiction mess. There is not a time that I don't feel like a drug seeker when I go to the ER to get some pain relief. I go to the ER after Iv'e had several days of unbearable pain so I don't keep opiates at home. I tend to take them when I get any pain and my body will become addicted and that sucks! I have not had any active crohns in years but still have bouts of pain and they dont know why. It's true that you need to watch taking opiates, and avoid any pain clinics that dont provide a full program ie: physical therapy, relaxation methods, bio-feedback, massage. They should also have a pain psychologist on staff too. You don't want a clinic that just hands out pills, they are the worst!! See if your GI or primary care doc can recommend a clinic for you. Hope you find some type of relief.


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## JohnnyRottenAppleseed

Yeah but the person I was responding to lives in NY. NJ has medical cannabis, and I never had a problem finding it when it was illegal. Opiates aren't worth it. If my friend had pins out in his hand with just ibuprofen and cannabis than imagine the possibilities. Opiates  are for short term use or for terminally ill IMO.  If you want to know true pain it is opiate addiction.


----------



## Amaze

Doctors always tell me "I wont prescribe you pain meds because I don't feel comfortable doing so" or "it wont help anyways, it'll just mask the situation"

I have the worst doctors/GI around. As a patient I feel neglected and not cared for. When ever I have an issue no one ever has an answer, reason, or a solution to things. 

As for the marijuana.... I can not smoke marijuana. It is illegal here in NY. I do understand NJ has medical cannabis but I have a job that gives out drug tests once in a while and even with medical card I'll still get fired.


----------



## Amaze

the pain I suffer can be tremendous. I have Crohns Disease, hemorrhoids, ulcers, and fissures. A cocktail of pain.


----------



## UnXmas

long time crohnie said:


> The medical profession is to blame. They over prescribed pain meds (opiates) and created a big addiction mess.


I'm usually the last person to defend the medical profession, but I do think they can't win on this one. If they prescribe opiates, they get blamed for creating addictions; if they withhold them, they get blamed for not treating patients' pain. Ideally they'd be able to assess each patient individually, take into account the type of pain, the length of time medication will be needed for, the patient's tendencies towards addictive behaviour, and prescribe correctly for each patient - but in reality that's incredibly difficult to do. Sometimes they're going to make mistakes. Though of course there are doctors who are far to liberal in handing out opiates inappropriately without considering other options and creating addictions - I just don't think this is always the case.

When I was in hospital in pain and couldn't have opiates because their effect on the digestive system made it unsafe, the doctors were really stuck. Nothing beats opiates when it comes to pain relief (in most cases). I think it can be the same when doctors are faced with dealing with chronic pain; non-opiate options often don't work, and they're faced with leaving the patient in pain or with potentially creating an addiction (which wouldn't necessarily take care of the pain either, as the patient may become tolerant to opiate medication).



> the pain I suffer can be tremendous. I have Crohns Disease, hemorrhoids, ulcers, and fissures. A cocktail of pain


What other forms of treatment are you getting? Have you ever considered treating your haemorrhoids with surgery? I've had surgery to remove haemorrhoids - it's usually only used in extreme cases, but it can work very well. What treatments have been tried to treat your fissures? If possible, maybe you could consult a colorectal surgeon?


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## F.u.Crohns

Have anyone consider switching to medical marijuana as a replacement for pain mangement. I know I'm addicted to pain killers the norco 10/325 one. I'm am really tired of ytaking pills and I just found out that medical herbs has help me more then the pain killers.


----------



## SMSIRL

I must admit that reading many of these comments I feel frustrated. I too have found myself in the situation of inadequate pain relief. I have had ALL treatment approaches , with the exception of medical cannaboids,  yet nothing works.

It is interesting to note that traditionally vets get significantly more training in pain management than doctors. Furthermore, drug companies have been found by the courts of having  provided false data pertaining to newer opiate medications to doctors. This tallied with inadequate training, legal and personal ethical stances makes the practice of pain management chaotic. 

What is really needed is proper development of pain management services and medications. Given, the commonality of the issue across various disease types there should be enough people to make an effective pressure group. If we look at how effectively our friends who faced with HIV in the 80 ' marshaled the medical and political establishments to find newer and more effective treatments we should be inspired to do the same for pain. The situation with respect to HIV is such that people can approximate normal life expectancy, mothers can avoid passing it to their children at birth, PEP can significantly reduce the risk of acquisition after exposure, the disease mechanism is very well understood, and many treatment approaches are being developed.

I think it would help a lot if we were to learn the lessons from the HIV/Aids lobby  groups and apply their techniques to pain management development. The least we should demand is that all doctors are given detailed training in pain management, and that treatment should be considered a failure if pain control has not been achieved. 

As an aside, when analgesics and anesthetics were initially developed many in the medical profession considered them inappropriate because it was only proper that the patient endure the pain! What is amazing is that their are still some who believe this - I have actually met a doctor who believes it! Fortunately, he wasn't mine - though given some doctors I've had you'd be forgiven for believing that of them

Under old Irish Law, should a treatment fail, the medic was required to return all fees and take on the cost and responsibility of all future treatments. I like that idea, but  I'll settle for their active pursuit of better and effective treatments and processes.


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## Saurabhdutta

Hello Every one . 
I need advice.. I am suffering by back-pain. But I don't take drug's. Please let me know without drug's how to reduce my pain..


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## JohnnyRottenAppleseed

Saurabhdutta said:


> Hello Every one .
> I need advice.. I am suffering by back-pain. But I don't take drug's. Please let me know without drug's how to reduce my pain..


Yoga type stretching.


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## JohnnyRottenAppleseed

SMSIRL said:


> I must admit that reading many of these comments I feel frustrated. I too have found myself in the situation of inadequate pain relief. I have had ALL treatment approaches , with the exception of medical cannaboids,  yet nothing works.
> 
> It is interesting to note that traditionally vets get significantly more training in pain management than doctors. Furthermore, drug companies have been found by the courts of having  provided false data pertaining to newer opiate medications to doctors. This tallied with inadequate training, legal and personal ethical stances makes the practice of pain management chaotic.
> 
> What is really needed is proper development of pain management services and medications. Given, the commonality of the issue across various disease types there should be enough people to make an effective pressure group. If we look at how effectively our friends who faced with HIV in the 80 ' marshaled the medical and political establishments to find newer and more effective treatments we should be inspired to do the same for pain. The situation with respect to HIV is such that people can approximate normal life expectancy, mothers can avoid passing it to their children at birth, PEP can significantly reduce the risk of acquisition after exposure, the disease mechanism is very well understood, and many treatment approaches are being developed.
> 
> I think it would help a lot if we were to learn the lessons from the HIV/Aids lobby  groups and apply their techniques to pain management development. The least we should demand is that all doctors are given detailed training in pain management, and that treatment should be considered a failure if pain control has not been achieved.
> 
> As an aside, when analgesics and anesthetics were initially developed many in the medical profession considered them inappropriate because it was only proper that the patient endure the pain! What is amazing is that their are still some who believe this - I have actually met a doctor who believes it! Fortunately, he wasn't mine - though given some doctors I've had you'd be forgiven for believing that of them
> 
> Under old Irish Law, should a treatment fail, the medic was required to return all fees and take on the cost and responsibility of all future treatments. I like that idea, but  I'll settle for their active pursuit of better and effective treatments and processes.


Cannabis and Aspirin combo FTW!


----------



## F.u.Crohns

So I made the switch to medical herb, since I live in California I got the card. So far everything seem to be much better since I'm tapering off the norcos and using herbs more often for pain instead of the pain killers. I strongly recommend people take this step for pain relief because its instant relief instead of waiting for the pills to " kick in ".


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## UnXmas

So I came off codeine following my surgery last October, because I suffered post-surgical ileus and the doctors wouldn't risk the codeine slowing down my already completely paralysed digestive-system. So I did a horrible cold-turkey detox. Now my ileostomy is suddenly extremely watery so I've been prescribed codeine again, along with loperamide, this time for the purpose of slowing things down. But yes, I'm looking forward to the other effects of codeine kicking in again now that my tolerance has probably gone down a bit. For me this means energy - yes, I know codeine is supposed to be a sedative, but it gives me energy (and I know some others on this forum also experience this effect). It means I can walk around without aching terribly, and that I can focus on a book or on the Internet without feeling it a huge effort and that all my energy has drained away.

Even when completely detoxed I haven't felt as good off it as I ever felt on it - i.e. it's not just withdrawal symptoms that make me feel worse - codeine has genuine positive effects for me as well. Plus maybe now my stoma bag will stop filling up so often.


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## CrohnDad

What herbal medicine is effective and legal?  Are they addictive?


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## CrohnDad

Anyone hear of Kratom?


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## JohnnyRottenAppleseed

CrohnDad said:


> What herbal medicine is effective and legal?  Are they addictive?


Effective and legal in CA and 20+ other states: Cannabis.


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## UnXmas

CrohnDad said:


> Anyone hear of Kratom?


I know very little about it, but I heard of it on a documentary on "legal highs". Although this may have been a biased documentary, I was convinced by it that using legal highs is generally not a good idea - being legal doesn't mean it's safe, and substances within this category often have not been well researched - meaning their effects on the body are not well understood - and are often unregulated making it difficult to know that you are obtaining the substance you are led to believe it is. (Also I'm not sure whether in some countries it might not be legal anyway.)

I do believe that drugs which pose problems when they are used recreationally can still have a place as treatments for pain or other symptoms, and that criticising or banning substances outright rather than allowing them to be used in certain circumstances - e.g. prescribed by doctors to patients in pain - is unhelpful and often leads to people missing out on potential treatments. However, as things are at the moment, I'd be wary of trying kratom as it doesn't appear to have been studied enough to be able to determine its safety.


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## UnXmas

So I'm back on codeine and functioning so much better on it or off! In my case, the benefits are worth the difficulties of being addicted. It's not slowing my stoma output down any though.


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## Dixiedoll23

Hi All :ghug:

So I'm off all my pain meds except tramadol now( as of July '13).I'm on the max 8 a day on the tram but I came down from 120 mg of oxycontin.I'd still like to try to get down to around 4ish, but I definately notice an extreme lack of energy and have focus issues just trying to cut down slightly.

I do have an apt at the pain clinic in a couple of weeks, but I think I'm going to ask for vicodin this time instead of oxy.I've noticed I don't have a tendency to go "overboard" with those like I can with other pain meds.Probably bc of the tylenol that's in them.
All I know is it's a constant battle.I get so sick of dealing with pain meds, the hassle of it all makes me not want to deal with them, but at the same time I really feel like I need them especially since my medications have all failed now and pain meds have been the only thing that slows the D down for me.They never constipate me but they do help cut bathroom time in half.


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## Rishi

GNC Crohn's Man said:


> Unless your in "real pain" they give you Toradol now... It is a strong NSAID and not addicitive... It is not safe for long term use though....


GncCrohn'sman! thanks... What should be the long term mean here?


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## UnXmas

Update: I'm still taking codeine daily again, but I think my tolerance reduced quite a bit during my break from it, as I'm getting quite a good beneficial result from taking less than half the recommended maximum dosage each day. I'm going to try and keep to this dose, and save taking the maximum dose for days when I really need it.


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## ECU_Drummer

UnXmas said:


> Update: I'm still taking codeine daily again, but I think my tolerance reduced quite a bit during my break from it, as I'm getting quite a good beneficial result from taking less than half the recommended maximum dosage each day. I'm going to try and keep to this dose, and save taking the maximum dose for days when I really need it.



I completely understand your situation. I was on Tramadol for just over a year and felt like it was becoming addictive so I stopped. It wasn't the best, but I adjusted to it. I recently had to go back on it because of the pain. I'm taking 2-3 doses a day instead of the 4-5 I was on before. It definitely feels more potent and I'm not sure how I was really functioning with the higher amounts in my system. Granted it's not codeine, but it is effective.


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## thaler2778

just looking at how many people take pain meds for crohns shocks me- I am one also that is on pain meds- hydro 7.5 325 mg. I use to be on 4 a day and doc dropped me to 2 day and now has me on oxycotin ER. any extended release tabs I find do not help crohns pain and yet my pain med doc keeps making me try them. why not continue giving me what was working??? Any suggestions. oh and I laugh because my sis just got a new gi doc and they told her they do not treat crohns with pain med haha. so she also just got into a pain management doc and they told her Tylenol or gabapentin. they will also not use narcotics, well for gods sake what do they want us to stay in bed curled up in pain everyday... docs make me laugh...


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## long time crohnie

thaler: Your doc may want you to take oxycontin due to it not having acetamenophen in it like the hydro does and may want to lower how much you have in your system. A lot of the meds we take, over time, may hurt the liver. The problems I always had w extended release pain meds is they flew right thru me and never broke down! I have Crohn's too, and I literally had to fish the pills out of the toilet to show him I poop them right out! I can't take any type of ER medications. Unfortunately, pain can be a big part of many of our lives from time to time, and due to the constant pressure docs are under to control the amount of narcotics they prescribe, many don't want to prescribe them anymore ie: GI docs. Mine won't. Had to go thru a pain management clinic or my primary doc, who are also under extreme scrutiny for the amount of drugs they prescribe. Its a big horrible mess, for ALL those involved w treating chronic pain. I finally got off pain meds after years of being on them. I still have pain, but can use them sparingly now that my body no longer craves them. A wicked cycle for a wicked disease. Good luck to you and your sis!! 
P.S. Wish my state had medical MJ, that would help a lot and not physically addicting!


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## F.u.Crohns

I'm glad your able to stop all pain meds long time crohnie. It was tough cause I also cold turkey on pain pills norco 10/325 strengths. What I end up doing is using medical marijuana for my pain management replacement. So far it has help and been super effective. With all this new advancement with medical cannabis, you don't even need to smoke to get medicated.


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## thaler2778

long time crohnie: as for the er tablets they do not go right through me, I currently have a ileostomy. they don't seem to work at low doses and when you up some of these meds to high doses they me extremely tired, I mean add in the depression, low vitamin levels etc. etc. its hard enough to balance day to day but then give me a med that is making me tired does not work for me at all. I am a mother of 2 youoys, I need something that will work fast and notware me out  my problem is when it comes to pain is I am having a flare up with the bag so I also have stool coming out of the rectum when I am not suppose to be. sicker than ever some days, I don't feel i should have to find a sitter and take my self to the hosp. to get iv pain med, such a hassel. and its so long and drawn out when you go there, your looking at 4 hours  I was told they just legalized med. mar. in my state but doc has never mentioned it  the sad part is I have been on those hydo's for 8 years why mess with my meds now .....


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## long time crohnie

thaler2778 said:


> long time crohnie: as for the er tablets they do not go right through me, I currently have a ileostomy. they don't seem to work at low doses and when you up some of these meds to high doses they me extremely tired, I mean add in the depression, low vitamin levels etc. etc. its hard enough to balance day to day but then give me a med that is making me tired does not work for me at all. I am a mother of 2 youoys, I need something that will work fast and notware me out  my problem is when it comes to pain is I am having a flare up with the bag so I also have stool coming out of the rectum when I am not suppose to be. sicker than ever some days, I don't feel i should have to find a sitter and take my self to the hosp. to get iv pain med, such a hassel. and its so long and drawn out when you go there, your looking at 4 hours  I was told they just legalized med. mar. in my state but doc has never mentioned it  the sad part is I have been on those hydo's for 8 years why mess with my meds now .....


How about hydromorphone? Dilaudid? It is straight narcotics and did better and not so "intoxicating" and work faster but not as long. and it doesn't have tylenol in it. I'd ask about med MJ. My GI docs have always been pro MJ, and admit to having patients who use it but cannot prescribe due to illegal here. Hope things get better!!


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## ECU_Drummer

I would second Dilaudid, that's what I request if I'm in major pain. It's what they gave me for the first 48 hours post-op. They have since transitioned me to Percocet 5/325 which wears off after about 3-3.5 hours. 

Docs are still wary about using medical marijuana because it's still pretty new as an acceptable treatment option and because of the laws surrounding it. I would be open to it but it's not yet legalized here in NC if I remember correctly.


----------



## Crohnnie

*Pain Med Advice*

​HI all-
So, I have been in a lot of pain lately due to a bad Crohns flare. I see a Pain Specialist and get 100mg cultural twice a day and doxycycline 40mg every 8 hrs. I have a huge tolerance to almost everything ans I am starting to feel that this regimen isn't working. I also have no large intestine (I have a J-Pouch) and have had pills pass right through me. I also have chronic diarrhoea; (I go 5-10x/day) so codeine is great for slowing the motility of my bowels. But, I had a liver transplant at age 13, so I don't want to take Tylenol on a regular basis. 
Who all is on Oxycontin, what dose, and does it help? I have been thinking it would be good to try since I have never been on it and shouldn't have a tolerance.


----------



## long time crohnie

Crohnnie said:


> ​HI all-
> So, I have been in a lot of pain lately due to a bad Crohns flare. I see a Pain Specialist and get 100mg cultural twice a day and doxycycline 40mg every 8 hrs. I have a huge tolerance to almost everything ans I am starting to feel that this regimen isn't working. I also have no large intestine (I have a J-Pouch) and have had pills pass right through me. I also have chronic diarrhoea; (I go 5-10x/day) so codeine is great for slowing the motility of my bowels. But, I had a liver transplant at age 13, so I don't want to take Tylenol on a regular basis.
> Who all is on Oxycontin, what dose, and does it help? I have been thinking it would be good to try since I have never been on it and shouldn't have a tolerance.


Hi Crohnie! RE oxycontin, you mentioned that pills pass right thru u, than oxycontin not a good med. It has a coating for extended release, I pooped them right out and I have a colon. You may want to consider a transdermal fentanyl patch. It absorbs thru the skin and provides long term relief. There are also liquid forms of pain medications that contain no additives that would hurt your liver. Dilaudid is another option for short term pain that also does not contain tylenol. There are options out there, dilaudid helped me w my chronic diarrhea. Hope this helped some.


----------



## Amaze

I am in pain everyday and I have terrible anxiety. No doctor will prescribe pain meds nor anxiety meds. I have gone to countless doctors and psychiatrists and no one wants to help. They want me to suffer.


----------



## long time crohnie

Amaze, I feel for you! Like Ive said in earlier posts, that more and more docs are pulling away from using narcotics due to over proscribing in the past. If he won't help, go to your primary physician and explain whats going on. That doc may help or refer you to individuals who can. It is a well known fact that those who deal with a chronic illness are much more prone to clinical depression and anxiety. A good psychiatrist along with a therapist who specializes in those with chronic pain may be of help for you. I am confused as to why he has you on Naltrexone? Had you had opiate addictions in the past? Hope to hear from you soon.


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## ehrhardn

I am wondering if anyone in ct area can suggest someone who does deal with pain appropriately.  My current dr told me he just thinks i like pain meds (while I was in the hospital) and suggested I go into pain management but then said he does not do referrals for pain management?!?! He also is  constantly putting me on prednisone (up to 80mg) and then yelled at me for blowing up.  Im to the point where i jsut want to cry in bed every day from the pain and the stress. Any help would be greatly appreciated


----------



## goofyrn2

I didn't see where anyone complained of joint pain with the Crohn's. My GI doc sent me to see a rheumatologist who diagnosed me with Crohn's arthritis and fibromyalgia. Alot of the drugs used for the Crohn's arthritis pain helps the crohn's symptoms. I do take hydrocodone and dilaudid for severe pain and it helps. What has also helped is Neurontin. I take Elavil at bedtime since I had problems with pain waking me at night. It is still a challenge day to day (my hands have weakened and are painful) and I can't do nearly what I used to. The arthritis has really kicked me hard. Now I have been recently diagnosed with PSC so that complicates all more. I have not had any problems with addiction but I have found I am allergic to most of the TNF drugs or can't take them because they have a latex contamination (I am anaphylactic to Latex). I have been in liver failure once and had serum sickness from these drugs but I am excited for those folks that can take them. I am currently on Methotraxate and steroids for the Crohn's and the PSC but monitored closely. Hope this helps.


----------



## juggys69

UnXmas said:


> So I came off codeine following my surgery last October, because I suffered post-surgical ileus and the doctors wouldn't risk the codeine slowing down my already completely paralysed digestive-system. So I did a horrible cold-turkey detox. Now my ileostomy is suddenly extremely watery so I've been prescribed codeine again, along with loperamide, this time for the purpose of slowing things down. But yes, I'm looking forward to the other effects of codeine kicking in again now that my tolerance has probably gone down a bit. For me this means energy - yes, I know codeine is supposed to be a sedative, but it gives me energy (and I know some others on this forum also experience this effect). It means I can walk around without aching terribly, and that I can focus on a book or on the Internet without feeling it a huge effort and that all my energy has drained away.
> 
> Even when completely detoxed I haven't felt as good off it as I ever felt on it - i.e. it's not just withdrawal symptoms that make me feel worse - codeine has genuine positive effects for me as well. Plus maybe now my stoma bag will stop filling up so often.


 Vic's have the same effect for me, i.e. I regain energy and feel somewhat normal, also I don't get addicted at all. Its supposed to be tougher for people that are actually in pain to get addicted, as we are taking those substances to negate negative effects and pain we experience, where the person looking for a high is looking for a glow to go with their already good health.

 I'd take being healthy and feeling healthy again over a high any day myself. One thing I do tend to worry about with the meds is that I know the "healthy" feeling they add is false and overdoing it by doing stuff I suddenly feel I am able to, but I know that no way in hell I would feel up to without them, like a false glow.

 I also don't get why they are the only pain med that is at all effective with me so far, I've been on many, including Tramadol which is supposedly quite effective, but did nadda for me, and I gobbled them like M&M's trying to get relief, they just didn't work at all. I really think that because I am hyper most meds just do not work on me, no other explanation.


----------



## Dixiedoll23

juggys69 said:


> I also don't get why they are the only pain med that is at all effective with me so far, I've been on many, including Tramadol which is supposedly quite effective, but did nadda for me, and I gobbled them like M&M's trying to get relief, they just didn't work at all. I really think that because I am hyper most meds just do not work on me, no other explanation.


See, from what I've heard from others is tramadols haven't done anything for them either.I've been on trams for many years now.Not because they are a great help with pain, but because they were much easier to get from doctors, and I felt somewhat normal on them.(ie no high feeling)
Since trams were just recently classified as a narcotic now, they probably won't be as easy to get.I'm actually glad they did that.Tramadols are just as addictive as any other pain med and doctors didn't believe me if I told them I was going through withdraw if I didn't have any.Plus since they have serotonin in them, you get a double whammy.Withdraw from the serotonin as well. :/


----------



## Dixiedoll23

goofyrn2 said:


> I didn't see where anyone complained of joint pain with the Crohn's. My GI doc sent me to see a rheumatologist who diagnosed me with Crohn's arthritis and fibromyalgia. Alot of the drugs used for the Crohn's arthritis pain helps the crohn's symptoms. I do take hydrocodone and dilaudid for severe pain and it helps. What has also helped is Neurontin. I take Elavil at bedtime since I had problems with pain waking me at night. It is still a challenge day to day (my hands have weakened and are painful) and I can't do nearly what I used to. The arthritis has really kicked me hard. Now I have been recently diagnosed with PSC so that complicates all more. I have not had any problems with addiction but I have found I am allergic to most of the TNF drugs or can't take them because they have a latex contamination (I am anaphylactic to Latex). I have been in liver failure once and had serum sickness from these drugs but I am excited for those folks that can take them. I am currently on Methotraxate and steroids for the Crohn's and the PSC but monitored closely. Hope this helps.


Me.Me. and me! I feel like a 90 yo my arthritis is so bad.I'm usually just curled up in a big ball most of the time.


----------



## juggys69

Dixiedoll23 said:


> See, from what I've heard from others is tramadols haven't done anything for them either.I've been on trams for many years now.Not because they are a great help with pain, but because they were much easier to get from doctors, and I felt somewhat normal on them.(ie no high feeling)
> Since trams were just recently classified as a narcotic now, they probably won't be as easy to get.I'm actually glad they did that.Tramadols are just as addictive as any other pain med and doctors didn't believe me if I told them I was going through withdraw if I didn't have any.Plus since they have serotonin in them, you get a double whammy.Withdraw from the serotonin as well. :/


 I noticed what you said with the Oxy and the Vic's, isn't it funny how the supposedly constipate the hell out of normal people and when the doctors ask you about it its like you grew two horns when you tell them, no, if anything they help regulate me ?  

 Also saw what you said about having a pain clinic appointment soon, the first thing they will do is epidermal's, or if its a weird new on electric treatment, if and only if they don't work they will consider other options. I honestly don't care, I just want something that works, it just offends the hell out of me knowing there is something that does work and they diddle and waste months to years of my time deciding to go back to that. I'm the one in pain, no skin off their backs but they are frigging supposed to be trying to help me, not treating me as a lab rat, I mean how long does it really take to decide something doesn't work ? Some things they want you on for weeks, its like come on, don't you think I know after a day, never mind that one hour if they freaking work ? Oh its all ok, yeah because you're not the one in constant pain asshat ! If I could have a super power, I would choose to be able to transfer my pain to each one of those dicks, I bet you they'd come up with a pain relief med that worked for themselves in a day to a week as opposed to weeks to a year and then switching you just because some damn laws changed because some twit doctors were subscribing to people they shouldn't have been in the first place.


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## UnXmas

I had a horrible experience with pain med addiction recently. I had emergency surgery and a new stoma (my third in under a year) due to a blocked intestine which perforated. I have very little memory of the days before and after the surgery, but I do remember being in intensive care and not being particularly uncomfortable. Later I was moved to another ward, and I had oxycodone through an IV in my arm, and a button to press when I wanted it. A pain specialist nurse came to see me, and she said I should push the button as often as I wanted; she said don't wait until you get pain, push the button at any discomfort, before it develops into pain. So I did. A couple of days of this, a different pain specialist nurse came to see me, and he said they should take the button away now. Since I didn't seem to have much pain, just a bit when I moved, I said fine.

Later that day, I wasn’t in much pain, but I was so uncomfortable, I couldn’t keep still, couldn’t sleep, and the restlessness was just unbearable. I know that sounds strange to say – that restlessness is unbearable, it sounds like something much more minor, but it really was terrible. Each minute dragged by like an hour. I begged them for the button back, and they gave it to me. And I felt so much better – I felt right again.

But the next day, they took it away again, saying I had to come off it some time. I wanted to cut down gradually, but they said no. Later in the day –same thing – I couldn’t stand it, and all I wanted was the button back. They called the pain specialist back again – the second one, not the woman who’d told me to use it as much as I liked. I told him I needed the button back, but when he asked me if I was in pain, I had to be honest and say no. He said if I wasn’t in pain, no painkillers. I told him I was addicted to the oxycodone, and that it was the withdrawal I couldn’t stand, but he was very uncaring and just told me I’d not been on it long enough to get withdrawal. The following night was awful, of the whole of that emergency admission, it was the hardest to get through, it felt like an eternity. If I’d known some way to get the oxycodone myself, I would have done it, and I think I  drove the nurses up the wall asking them to give me something that would help.

Luckily the withdrawal did end. When I saw the pain specialist again, I told him that no matter what he said about my not being on it long enough to be addicted, I knew that I had been addicted. He really didn’t seem at all interested in what I had to say though.

I spoke to doctors about it though, and they said that the only thing with worse withdrawal than oxycodone was heroin. My codeine addiction was nothing to them – they were quite happy, once I was off the oxycodone to give me plenty of codeine and oral morphine. (When I was off everything, I realised I did actually have quite a bit of pain, but the morphine and codeine kept it under control. They gave me paracetamol too, though I’ve never noticed that actually having any effect on pain.) Because this surgery was an emergency, I didn’t discuss pain relief beforehand – by the time I was with it enough to know what was going on, I think I’d already been having IV oxycodone along with some other things for a couple of days. But if I ever do need surgery again, I honestly think I’d rather the pain than the withdrawal from painkillers. I’ve had many surgeries before and had no pain relief after them – my surgeon didn’t want to risk any opiates as they slow down bowel function; they did give me paracetamol, but as I said, I don’t count that as pain relief. The withdrawal was definitely worse.


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## UnXmas

Why did I think it was a good idea to finish all my codeine over the weekend when I knew I won't be getting any more for a few days? :confused2:


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## UnXmas

And I made an extra trip to the chemist and got my codeine, so feeling ok again.


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## UnXmas

Going to try to have a codeine-free day today.


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## goofyrn2

Good luck UnXmas


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## goofyrn2

Good luck UnXmas. I have not had problems with addiction.


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## UnXmas

Didn't manage it.  I think I could have if I wanted to, but I didn't want to. I wanted to take my dog for a walk because I love the grey miserable English weather (seriously! I love Autumn and Winter - just wish it was colder!) and I was all achy and had no energy. I took some codeine and felt well enough to go out and not just force myself to, but actually wanted to and enjoyed it.

Edit: Trying again today.


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## UnXmas

Yesterday was better! I've taken some today, but less than usual - enough to prevent withdrawal.


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## goofyrn2

One day at a time......


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## UnXmas

Today's been better.


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## goofyrn2

Glad to hear it. Hang in there and keep us posted.


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## UnXmas

No codeine at all today.  Might take some later when withdrawal symptoms start. Yesterday that's all I took too - none until early evening, then moderate dose to stop withdrawal. I'm using Modafinil as a kind of substitute: http://www.crohnsforum.com/showthread.php?t=67990

I'm also very aware that I've gone through a lot of my codeine prescription that's supposed to last me a couple more weeks yet. Last prescription I ran out too early and don't want to repeat that. But why did I wait 'til now to try and moderate it?! :confused2: Why was I too stupid to do that from the start? It's the same with my weight - I know my doctors will hospitalise me if I don't gain enough weight each week, but I spent a while faffing around before I actually realised I have to force myself to eat more. I guess I always want to see what I can get away with.


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## goofyrn2

Keep up the good work UnXmas. Hang in there. It's a hard road but I'm sure with time you will get there. Thanks for the link about Modafinil.


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## UnXmas

Late afternoon now, and I'm still doing ok!


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## goofyrn2

Cool. Glad to hear it.


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## UnXmas

I'm worried that I'm dominating this thread. Does anyone mind or should I start my own thread?

Edit: I think I will stop posting about the codeine on this thread, and post about it on my Modafinil thread instead ( http://www.crohnsforum.com/showthread.php?p=826484&posted=1#post826484 ), since the two relate to each other. It seems more  appropriate.


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## goofyrn2

I , personally, don't have a problem with it UnXmas but lets see what other folks say. I have not had any problems with addition so I wish I had suggestions for you. Hang in there.


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## UnXmas

Been a while since I last posted on this thread. I've had many codeine-free days recently, and my overall consumption is down quite a bit. The doctor's prescription now lasts me a month like it's supposed to. I still take it all at one time though, I don't take the 30 to 60 mg at a time like I'm supposed to, I take, at the moment, usually 180 to 240 mg in one go, though that's lower than my average dose was a couple of months ago. And I still take over the daily limit often. It's just not effective to take 30 to 60 mg at a time and never go over 240mg in a day. Much better to have 240mg in the morning followed by another similarly large dose later in the day and have a really good day. If I took 30mg and then a few hours later another 30mg and so on, it would just waste it because I'd still get through a lot of it but not feel any benefit other than staving off withdrawal.

And withdrawal is a funny thing. One thing I've found that's helped me to cut down is that sometimes I feel awful withdrawal and sometimes it's not that bad. (And the reverse is also true: sometimes a high dose makes me feel so much better, and other times only a bit better - but always at least a bit, it never fails to make me feel a bit better and I always feel better taking some than none.) So I try going without, and if the withdrawal's awful I take some, if it's not, I keep going without.

And I'm still using it in the way it's of most help: if I feel awful, physically, mentally, for reasons nothing to do with codeine withdrawal, a big dose will calm me down and steady me a bit.


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## goofyrn2

Hi Unxmas

Have you considered Methadone? I have no idea about how withdrawal works but perhaps you can work with a withdrawal clinic but they would require you not to take your script. Just something I am throwing this out there for your thoughts. 

Happy New Year.:dusty:


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## UnXmas

I don't think codeine is strong enough to warrant methadone. Codeine withdrawal just feels like having the flu, getting over-emotional, and really wanting to take some codeine even though I'm not quite sure why I want it. Taking methadone would cause more problems than carrying on taking codeine. Thanks for the suggestion though.  Happy New Year to you too!


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## goofyrn2

Unxmas

Are you in a state that offers medical marijuana? Again I am just racking my brain to help you. It is not offered in Virginia. Very conservative. Well, that is all I can think of at this point but I feel your frustration. Take care and thanks for a Happy New Year. They, being Christmas and New Years comes faster and faster the older I get...LOL


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## UnXmas

I'm in the UK, where medical marijuana is illegal everywhere.


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## UnXmas

But don't worry about me, goofy. I don't intend to stop codeine completely. If I did want to do that, I'd just ask my GP to stop my prescriptions. You can't buy codeine here, you can only get it if you have a doctor's prescription (well, you can buy codeine in very small doses that also contain paracetamol. The reason for the paracetamol is that it makes you sick if you take too much, so you can't take any more than the very small amount of codeine - I know, I've tried it  and I can't stand feeling nauseous, so I won't do that again!). If the GP stopped my codeine prescription, I'd go through a few days of feeling like I had bad flu, but it's not dangerous and it's not terrible - I've done it many times, voluntarily. But what I'm trying to do at the moment is cut my codeine use down, because it was getting out of hand, but not stop it.

Maybe it would help if I set myself definite limits to stick to. I have been cutting down, but when I feel bad I take more. Maybe if I set myself a specific number of pills to take, and maybe another specific number for when I feel very bad, it would be easier than just having the undefined idea of cutting down. Guess I could also ask my doctor to reduce my prescription? except I need to have control of it myself.

But anyway, codeine addiction and withdrawal are nothing compared to strong opioids, I'm sure other drug addicts would not be impressed by the amount of fuss I make about it.  And codeine withdrawal isn't dangerous, which is another critical difference. When I was in hospital, I had oxycodone - I posted about it on this thread - and the withdrawal from that was something else - and I'd only been on it for a few days! _That_ withdrawal was awful, and there was no way I could have done it by myself. I was begging the doctors and nurses for more.... if there'd been any way I could have got someone to sneak it into the hospital for me, I probably would have, I was that desperate for it. 

A nurse told me that if you imagine a scale of the strength and withdrawal of opioids, heroin would be at the very top: the strongest effects and the most terrible withdrawal. She said oxycodone would be right up there just below heroin, though the withdrawal after just a few days of use shouldn't have been anywhere near as bad as it was for me. I think for some reason opioids just do it for me: something in my physiology just responds to them and taking them makes me feel so well, and my body just *hates* it when they're taken away. And the nurse said codeine is right down at the bottom of the scale. In fact, once I was off the oxycodone, the doctors were fine with letting me have doses of codeine higher than the recommended maximum. I think they felt that, compared to oxy, codeine addiction wasn't worth worrying about.

From that experience I learned never to try another opiate: pain is better than withdrawal. But also that codeine addiction isn't terrible.


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## UnXmas

Btw goofy - do you have pain? How do you manage it? (A lot better than I do obviously.  ) I saw on your profile you have fibromyalgia, and am I right in remembering your take Elavil? I take it, but for pain but for sleep and as an antidepressant. Have you joined the support group for it?

http://www.crohnsforum.com/showthread.php?t=47926

(Elavil's a brand name for Amitriptyline.)


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## ak23

I've read through this thread and I've noticed that a lot of you talk about taking Dilaudid. Are you taking it at home, in pill form? I've only ever gotten that in the ER by IV. When I need pain meds at home, I've only been given Tramadol (or a few days worth of Vicodin if I'm being discharged from the ER). I was just curious because I've never heard of docs prescribing Dilaudid pills for home (which would seem like a life changer!).


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## UnXmas

I pulled a muscle or something in my leg the other day. Codeine stopped the pain like magic. There are definitely benefits in continuing to take it.


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## goofyrn2

Hi UnXmas.  I didn't kow there was a group for fibro and those taking Elavil. It really does take the pain away at night time and helps me to rest. One a new note....I tried the new drug Entyvio approved by the FDA for Crohns and after the fourth does I had an anaphalysis response and off to the ER I went. I looked like a burn victim. It was all over, hurt like being a burn victim and had respiratory involvement. Now my GI guy is sending me to medical centers to see if they have any studies going on. The only thing I am on now is steriods and that aint cutting it. Hope all is well with you and hope others have more success with this new drug. It is a great hopeful drug for so many that struggle with remission.


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## UnXmas

Goofy! That sounds awful! Have you had reactions to other meds before?

Amitriptyline (Elavil) still works very well for me at night. I've been trying to find alternatives to codeine; my doctor prescribed me tramadol but I'm not sure the benefits were worth the side effects, so I'm still in the same situation with painkillers, trying to make my prescription last longer, but my doctor isn't concerned and tells me to take codeine if it makes me feel well, which it does.


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## goofyrn2

Hi UnXmas. I have tried so many drugs including all the TNF drugs. I have had anaphylasis to liver failure. Some of them have latex in them or in the vials they are in and I am anaphylatic to latex as well. Sorry my spelling is not my forte. I do take narcotics for the pain and the doc tells me to take them but I don't have any problem with lowering the dosages or taking the full amount as perscribed without any addiction symptoms. My heart goes out to you. Crohn's is just so complicated in itself and then the meds with their side effects complicates things even more.


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## long time crohnie

I am so blown away, hurt and angry!!! I've said before on this page that I've been on and off narcotics for years and with in the last 2yrs i've been able to stay off them. I'm having a bad spring (my crohns seems to flare in spring and fall), and needed some pain relief. I went to the ER, as I have been told to do in the past, and was denied pain meds unless I submitted myself to a CT scan and scads off other tests to see what was causing the pain. I told him I know what is causing the pain and I see my GI in two days and would rather have him call the tests due to expense. He told me due to having signed a substance agreement he cannot give me meds. I said this makes no sense, the contract is to make sure I stay within my Docs not ER, besides, I said, I have pain meds at home that are not working, I don't want to leave with any, just need a break from all this pain. He looked at me like I was an idiot and seeking out medications. I left AMA, crying for being accused of doing that! He was so cold and mean, and has no clue how to deal with a chronic pain patient. Sorry had to vent. I hate this disease!!!!!


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## UnXmas

I'm sorry long time crohnie.  Do you have a copy of the contract? The hospital must have records of your ER visit, you could find out who this doctor was and get his superiors to educate him. If you don't have a copy, it sounds like it would be a useful thing to have should you ever need to go to the ER again.

Why on earth would a doctor only give you pain meds if you have a scan? If you _were_ drug seeking (which is a possibility the ER doctor did have to consider), why would it then be ok to give you meds after the scan?! Or did he mean only if tests revealed a legitimate cause of your pain to prove you weren't just drug seeking? Did he not even offer you non-addictive pain meds? I know they're often useless, but things like paracetamol may have helped you a bit.

Again, I'm very sorry this happened to you. You're doing so well staying off pain meds, you don't deserve to be treated like this for something in your past when you've moved on.

Can I ask though, if you were to take painkillers again now, do you think it's possible you'd have difficulty getting off them again? If you're pretty confident it wouldn't be a problem, maybe your usual doctor could give you an emergency supply to keep at home so as to eliminate the need for ER visits.


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## long time crohnie

UnXmas,  Thanks for your reply and support. I cannot find my copy of the Controlled Substance Contract and have asked my doc for a copy. It is my understanding that you must sign this if you have been given any controlled substance within the ProHealth doctors. I signed one for my psych doc due to being on xanex for anxiety. It is standard practice. So yes, I do have an emergency supply, why one of the two contracts I've signed, for oxycondine. Unfortunately these meds were not helping, which is why I went to the ER. I explained what happened at my GI appt yesterday and my PA was appalled. 

Im well aware of people drug seeking, which is why they implemented this contract. To ensure you stay within the providing physician and not dr hop. He meant that he would not give me any pain relief unless they found a problem via cat scan. My GI agreed that I should not have had to have one. He offered my nothing but accusations that I was a seeker. I haven't been to the ER for pain relief in 18mos!!

Re taking pain meds now, I try and not take them daily and if need be, only 1-2 a day. I know all too well how fast our bodies can become addicted, Ive cleaned my self up 2x in the  past 20yrs (on my own knowledge of being on too many and not knowing my pain levels any more). I believe that addiction is a chronic issue w this shitty disease, and as long as I am open and honest to my docs and make sure they monitor me, I'll be ok. Thanks again


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## UnXmas

> I believe that addiction is a chronic issue w this shitty disease, and as long as I am open and honest to my docs and make sure they monitor me, I'll be ok.


This is how I think about it too. I know I'm addicted to painkillers, but I also know I have legitimate pain. But since secrecy is meant to be a major sign of an addict, I make a point of not keeping anything from my doctors, including telling them I'm addicted and that I take more medication than I should (which they know, since they prescribe it all).

I haven't heard of contracts before, maybe we don't have them in the UK or maybe they don't have them for codeine, which is the only addictive painkiller I take when not in hospital.

I hope your pain is better and you can avoid the ER and its less-than-helpful doctors.


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## UnXmas

So update on the pain med situation: I've fractured my spine. I think I probably fractured it over a year ago as that's how long I've been having lower back pain for, but I recently had an X ray confirming it. The background to this is that I've had osteoporosis since childhood (idiopathic juvenile osteoporosis) and the idiopathic childhood disease has been worsened by steroids, low weight and malnutrition to result in my bones being incredibly thin. So this fracture is undoubtedly going to be joined by more (it's amazing I haven't had other breaks by now) so more pain is in my future. And besides that there's the stomach pain of course, though I've been lucky that my Crohn's pain has not been chronic; I've had episodes of severe pain, and of course pain from surgeries, but I've always known there was an end in sight. And that's still the case. I get blockages and such, but normally my stomach is merely uncomfortable.

But anyway, my doctor has increased my opiate pain meds. I know I'm horribly addicted (I went through one of my opiate-free trials yesterday, just twenty-four hours, and I was beginning to get a bit desperate by this morning. I just took them half an hour ago and feel very relieved). But I would rather continue the addiction than give it up. My doctor and I have tried all sorts of non-opiate meds, and physiotherapy, but they don't touch the pain. (Though the physio has helped a lot with other issues.) The only other thing that's ever helped relieve pain for me is diazepam (used as a muscle relaxant), but that's addictive too! Amitriptyline is hugely beneficial as it allows me to sleep through my various pains and discomforts at night, but I've not yet become desperate enough to need to sleep through the days as well.

I don't think I really have a question to ask with this post, but any advice is welcome, even if it's to tell me that increasing my meds further isn't a good idea. If that is how anyone feels I'm open to discussing it.


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## darster

Having been through the pain med/addiction/recovery road, I sympathize with you. Being in constant pain is awful. There aren't a lot of alternatives. It is a difficult situation, no getting around that.


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## westdevonna

I realize that this might be very late but I would like to point out that they do give you narcotics when you have pain because being in pain not just sore or discomfort but real Crohn's pain puts stress on your heart which if you are already dehydrated and having problems would be very bad now of course you should not be taking them like candy or on a constant basis but when used properly they work with little to no addiction problems it's a medication like any other one and can be dangerous like all medications so if you do what your doc says to do you will be alright now yes you can become dependant on them but that does not mean addict sometimes its because you are litterally in pain and without them your body will freak out that is why they are only used when pain is interfering with your daily life especially when eating or sleeping which are crucial to healing also no they don't like to prescribe then when you have obstruction and blockages but in the words of my old GI who was awesome what are you supposed to do be in pain all the time litterly there are not that many options as seeing the only over the counter a person with Crohn's can take is Tylenol and to be honest not does not even treat my constant headaches I hate when anyone says take tylenol it doesn't help but to each his own so it's not uncommon for Crohn's patients to be put on narcotics for pain it's just not what they want but they cannot keep you in pain at least any well-meaning caring physician should not do and if they refuse to do anything at all about the pain time to find one who will


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## Trapper

Take a look at ondansetron. It's an anti-emetic. I was given it to get me off cyclizine, but it causes terrible migraines.

However! There are very promising studies showing ondansetron can mask the worst cold turkey withdrawal symptoms. This is why I've kept as many as I can - sooner or later I'm going to have to come off the codeine. Last time took weeks and was extremely uncomfortable.

Someone earlier mentioned methadone. This is foolish - if you're shooting up heroin every day then, yes! For codeine it would actually make you higher and re-enforce the physiological dependence.


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## pfosterm1963

I get bad insomnia and headaches that last 2 days when I take hydocodone or morphine. Does anyone else have theses issues with pain meds?


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## UnXmas

Trapper said:


> Take a look at ondansetron. It's an anti-emetic. I was given it to get me off cyclizine, but it causes terrible migraines.
> 
> However! There are very promising studies showing ondansetron can mask the worst cold turkey withdrawal symptoms. This is why I've kept as many as I can - sooner or later I'm going to have to come off the codeine. Last time took weeks and was extremely uncomfortable.
> 
> Someone earlier mentioned methadone. This is foolish - if you're shooting up heroin every day then, yes! For codeine it would actually make you higher and re-enforce the physiological dependence.


You're right about the methadone. 

Does ondansetron help with any withdrawal symptoms besides nausea?


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## UnXmas

pfosterm1963 said:


> I get bad insomnia and headaches that last 2 days when I take hydocodone or morphine. Does anyone else have theses issues with pain meds?


I've not had that problem. I don't know about hydrocodone, but I've had morphine several times, and I've always found the side effects I do have to be very short-lived rather than continuing for days. I think morphine causes drowsiness rather than insomnia. But I've contradictory side effects from some meds, so I think it's perfectly possible that your insomnia and headaches are from hydrocone and morphine. Have you tried any other painkillers?


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## pfosterm1963

I've tried Tramadol with the same problems.  I have to be very sick in order to take a pain med. I am in  a bad place with these issues. Thanks for your reply.


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## pjm357

A pain management Doctor once told me I should never feel guilty or ashamed because I have to take pain medication. Its a needed medication for some and one should never feel guilty or be made to feel like a addict because they are in constant pain from a health issue. You cannot help the fact that you are in pain and its not appropriate for anyone to call you a addict because you need these meds to function. 

That being said I do take pain medication and I would say my body is addicted to them. But what exactly are you suppose to do? Am I suppose to curl up on the couch in pain all day? If it were not for these medications I would not be able to do much of anything. Between my Stomach and back I wouldn't be able to function on a daily basis. I'm certainly not saying you need them for every little twing that you feel as pain is the bodies way of letting you know there is something wrong. But when you  know whats wrong and there is nothing that can be done. It is certainly not the humane thing to do to expect someone to experience debilitating pain. 

People that have called me a "Pill head" are the same people that would rush there dog to the vet if they thought it was in pain, would do anything for the animal to help its pain. But yet a person in pain taking a prescribed medication is a drug addict. There is something wrong with the world today.  

If you are in pain please do not feel bad about taking your medications. These people asking you why you need it are not the ones in the pain. They do not know your pain nor do they understand what its like to be in constant pain as we sometimes are. 

I get asked what Crohn's pain feels like by people all the time. My reply: Go get a pair of vice grip pliers, grab your stomach with them and twist as many times as you can never letting go. This is the best way I have found to express the lvl of pain I experience with Crohn's. And I'm suppose to go without my meds no I think not.


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## UnXmas

All good points, pjm. What medication do you take, if you don't mind my asking? Do you find tolerance a problem? (You probably know the difference between physical tolerance and mental addiction, as you seem to know what you're talking about, but if not, tolerance to a pain med means you need to keep upping the dosage because you've used it often and your body has become tolerant to its pain-relieving effects.)


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## pjm357

UnXmas said:


> All good points, pjm. What medication do you take, if you don't mind my asking? Do you find tolerance a problem? (You probably know the difference between physical tolerance and mental addiction, as you seem to know what you're talking about, but if not, tolerance to a pain med means you need to keep upping the dosage because you've used it often and your body has become tolerant to its pain-relieving effects.)


I take hydrocodone when its really bad I take percocet. My PM Doctor had me on Methadone at one time but it created a problem with constipation so he switched me to the Fentanyl Patch.  I had to ask him to think about it for a minute.  This medication is causing extreme constipation in someone with a narrowed ulcerated bowel which in turn is causing me pain which I come to you for help with. He took a minute to let it sink in and then changed me to the patch.    

Yes I have a problem with resistance to pain medications. But I find that if I keep my GI DR informed on my pain medication lvl's and inform the ER dr's they will generally treat my pain correctly when I have to go to the ER or am hospitalized. 

Its a shame that we have to go to a pain management dr to get the relieve we should be able to get from our GI Doctors.  These recent laws they have created related to narcotics have caused more and more people that cannot afford 3 Doctor visits a month to have to turn to other means of pain relief. How is it that a Dr treating a extremely painful condition has to ignore one of the symptoms of the condition for fear of loosing his practice.


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## pjm357

pfosterm1963 said:


> I get bad insomnia and headaches that last 2 days when I take hydocodone or morphine. Does anyone else have theses issues with pain meds?


Hydrocodone keeps me up at night when I have to use it. I find it helpful to take a melatonin tablet. Its a non addictive sleep aid found in the vitamin section of your pharmacy. It WORKS!  As with any addition to your meds I would ask my GI DR if it was ok before taking it though.


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## Jaredj

After 7 years of being rx'd Hydromorphone, I'd become hopelessly addicted to opioids. Throughout those years my saving grace was a friend with a Buprenorphine prescription.
I now have my own RX for Suboxone and I think its safe to say that it has completely saved my life. Not to mention the constipating effect actually allows me to function without the fear and anxiety that comes with not being able to control my bowls.
I wonder if any of you can relate to this positive effect opioid constipation can have? Understandably some opioids cause more severe constipation then others, and believe me I've tried them all, but at the same time I've found that others allow me to function in life. Specifically (for me) Buprenorphine.


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## Nickk2017

hi
    A doctor treating a person for pain needs to look for potential risk factors for substance abuse, such as a personal or family history of other types of substance abuse or psychiatric disorders,


Thanks


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## Bufford

I've been on percocett for over 15 years and have not had any real problems.  First off one has to respect the med as its very additive.  The tendency is to want more as time goes on.  I avoided that route and limit it to two tablets a day maximum.  Often only half a tablet is enough to settle the pain.  This painkiller does two things well.  It provides that all important glow or feel good as it goes to work that other pain meds don't.  This reduces stress and takes away ugly weight of cramps giving me a decent level of life quality.  The other thing is it helps with watery stool and I have better formed bowel movements.


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## MadDrJeckel

goofyrn2 said:


> Hi UnXmas.  I didn't kow there was a group for fibro and those taking Elavil. It really does take the pain away at night time and helps me to rest. One a new note....I tried the new drug Entyvio approved by the FDA for Crohns and after the fourth does I had an anaphalysis response and off to the ER I went. I looked like a burn victim. It was all over, hurt like being a burn victim and had respiratory involvement. Now my GI guy is sending me to medical centers to see if they have any studies going on. The only thing I am on now is steriods and that aint cutting it. Hope all is well with you and hope others have more success with this new drug. It is a great hopeful drug for so many that struggle with remission.


Didn't your GI Rx  Benedryl and/or prednisone bolus in your first month or so of a new biologic to PREVENT the anphaphalctic shock?


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## Spedley

I have intermittent Crohn's symptoms.  I was eventually prescribed Tramadol 50mg which I take when I've had enough of pain and want a break.  On the plus side, 1 tablet takes about an hour to work and yet the effects usually last for 2-3 days.
As much as anything it gives me the confidence to know wherever I go I have a backup plan which will get me through the occasion should I need it.
I am very careful with Tramadol, I've given up smoking and drinking so I can recognise the signs of addiction easily and I can see how people get addicted to it.  At most I use about 25 tablets per year.
Other than that I'm lucky that I don't need anything.


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## allieinwonder

Spedley, thats great that tramadol helps you. It sounds like it helps the diarrhea as well as the pain. I was on tramadol as needed for many years, until I was put on medications that had interactions with it. Tramadol actually messes with the serotonin levels in your body as part of how it relieves pain, so make sure you don't take other meds that also mess with it. 

Its also good that you are careful. The more careful you are, the slower your tolerance will rise. 

I am currently on lyrica, cymbalta (antidepressant that can help pain) and hydrocodone 7.5mg for chronic abdominal pain. I was actually on morphine ER 15mg earlier this year after my insurance took me off butrans patches. I am glad I found that lyrica and cymbalta help.


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## MarchelloHUdson

Folks, here is a suggestion....discuss with ur GI, I have tried everything and finally using Zubsolv, a month supply I can titrate and lasts 4 months...If you have Short Bowel Syndrome, no need to worry about constipation or transit time....this works miracles for me...controls diarrhea, stomach pain and no high or NO euphoria, leg and arm pains and cramps....use it at night...
You need Pain Specialist-Anaesthesiologist  to write this script.
good luck....
new studies 2 tylenol and 2 ibuprofen= better relief than any opiate...
Cheers...


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## ronroush7

MarchelloHUdson said:


> Folks, here is a suggestion....discuss with ur GI, I have tried everything and finally using Zubsolv, a month supply I can titrate and lasts 4 months...If you have Short Bowel Syndrome, no need to worry about constipation or transit time....this works miracles for me...controls diarrhea, stomach pain and no high or NO euphoria, leg and arm pains and cramps....use it at night...
> You need Pain Specialist-Anaesthesiologist  to write this script.
> good luck....
> new studies 2 tylenol and 2 ibuprofen= better relief than any opiate...
> Cheers...


About the ibuprofen,  be careful about nsaids.  They can cause bleeding.


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