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Pain medication and addiction in Crohn's Disease

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xrayzerase

Guest
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

Guest
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

Guest
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

Guest
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.
 
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

Guest
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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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

Guest
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

Guest
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
 
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
 

Cara Fusinato

Sarcastic Forum Comedian
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

Guest
REM???Isnt that Rapid Eye Movement time? So thats when your actually not gettting your best sleep isnt it?
 
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Skinsfan1229

Guest
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.
 
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...
 
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

Guest
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

Guest
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

Guest
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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HeidiZoo

Guest
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

Guest
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

Guest
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

Guest
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.:eek:
 
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xrayzerase

Guest
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

Guest
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

Guest
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
 
X

xrayzerase

Guest
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!!! :D
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 :)
 
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
 
M

Matthew

Guest
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
 
M

Matthew

Guest
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
 
E

Evagation

Guest
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.)
 
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X

xrayzerase

Guest
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.
 
J

Jvstin

Guest
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.
 

Kev

Senior Member
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!
 
S

spipe

Guest
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.
 
J

Jvstin

Guest
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.
 
S

Samantha22

Guest
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
 
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
 

Kev

Senior Member
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?
 
S

Samantha22

Guest
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
 
M

melodia

Guest
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!
 
M

MikeB101

Guest
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?
 
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
 
T

Tdogzjoint

Guest
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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C

Catmandu30

Guest
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!
 

Kev

Senior Member
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
 
T

Tdogzjoint

Guest
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?
 
T

Tdogzjoint

Guest
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...
 

Kev

Senior Member
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.
 
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
 
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.
 
N

nochie

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

Kev

Senior Member
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.
 
I

Isla

Guest
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!
 
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.
 
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
 
A

albertjames

Guest
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.
 
O

Op.28/18

Guest
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.
 
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:
 
J

JGBeatCrohnsDisease

Guest
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
 
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.
 
S

sabrina

Guest
Hi - new to this site

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

Lucas80

Guest
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
 
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!
 
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
 
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

Spoonie
Location
Michigan
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!
 
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

Spoonie
Location
Michigan
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!!:D i wish i could go to bed and get pancakes^.^
 
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

Spoonie
Location
Michigan
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?
 
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

Spoonie
Location
Michigan
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...
 
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
 
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:
 
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.
 
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:
 
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.
 
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?
 
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.
 
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

ele mental leprechaun
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))
 
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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. :(
 
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
 
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.
 

soupdragon69

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