Pain medication and addiction in Crohn's Disease

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anyone who has constant pain and is on the verge of addiction/addicted, i definitly reccomend seeing a specialist and getting some type of pain patch. i was taking 12-14 percs a day to manage my pain w/o enough relief, now i have 25 mcg fentanyl patch and im down to 2 percs a day.
the patch is awesome and covered my pain so that i could get down off the perc before i was in deep water. i take one here and there when i have pain thruought the day and overall dont suffer too much.
i cant imagine if i was without it, im sure id be up to 30+ percocet each day right now, and not only physically addicted but mentally.
as far as i know the patch isnt addictive cause its constant, no extreme low and then craving for the high and releif.
not sure if you have to wean off the patch though.....not sure how that works. huh.
is anyone else on patches too?
 
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Yup, I got a patch for my back and joint pains. Brilliant thing despite it not taking away the pains completely which is probably a good thing so I don't over do it and do my back a severe mischief. I don't think it's slowing my gut too much - I've only had it 4 days so it's only just up to full blood level.

It's just 5mcg/h BuTrans - buprenorphine.
 
I'm on the Fentanyl patch 12mcg and I also have the Fentanyl losenges which are 100mcg I think. I was on Fentanyl prior to this occasion but went through a period of not needing painkillers, then ended up on MST. With the MST it just got to the point where it was becoming less effective, the dose was being increased and it just wasn't a great situation to be in. For me Fentanyl has given me the most relief, without many side effects - the only one I've noticed is that I now bruise very easily.

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

You do have to wean off the Fentanyl patch - it comes in 12mcg, 25mcg, 50mcg, 75mcg and 100mcg so wherever you were at dose wise you just work your way down. :)
 
my mum has crohns (diagnosed and operated 32 years ago), and was given codiene phosphate for the first few weeks and was told that if she couldnt do without in those first weeks then she would never come off it, and 32 years later she is still on it, although the dose has been slightly lowered (self prescribed)
 
I take 2 endocet every 8-10 hours for the horrid spasms and pain.. I'm trying to space them out and get off of them... To have to take these meds is as bad to me as having to take Humira. They offer nothing but a temp relief from the pain - but nothing more. I can't wait until I have no reason to take these meds.. however, I also realize it's rather inhumane to be in agony with no relief, I'm not into being superman.
 
Hi..I'm 65 years old, still working and trying to stay active. Had Crohn's since 12 years of age.
Two bowel resections. Surgeon tells me no further surgery possible. I guess I'm close to "short gut syndrome" On Humira and Pentasa, but still much gut pain and diarrhea. I can hardly eat anything without pain starting about two hours after eating.
Been suffering pain for many years. Finally my GI doc relented and gave me Vicodin-5. Now seeing my GP for pain control. Taking Vicodin-10 3 x day for pain which is barely holding it.
At my age I don't know how long this is going to go on.
Is it bad to be taking narcotics long term at my age? I still have to work and function in lift.
 
Hi there Supersabre welcome to the forum!!, have you tried Remicade??? I think it is a stronger drug than Humira, I was on Humira for weekly shots and peter'd out. I have had two resections, about 2ft gone but going to find out if it is possible for a 3rd surgery as all meds have been exhausted.

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

Take care!
 
Thank you Jettalady...
I took Remicade for almost five years with great success, but it stopped working a little over a year ago.
We tried 6MP several years ago, but got a god awful case of pneumonia and had to discontinue it.
Yeah, I'm kind of worn out dealing with CD for so long. I just want to keep some kind of decent quality of life because I do have a life to live. So I figure if I have to take pain meds to stay somewhat free of pain, I should take them.
On the addiction issue I'm conflicted. Do I suffer as I did for so many years, or use pain meds and possibly become addicted? I have that Puritanical guilt thing about the pain meds which constantly bothers me, but on the other hand I don't especially want to be in almost constant pain for the rest of my days.
What's right?
 
I am with you! It isnt good to be on them but perhaps there is another alternative. A good idea so everyone else on the forum can see you are a newbie, go on MY Story thread and post your story, that way everyone can welcome you and give some advice from their point of view. This is a very friendly forum, maybe they just dont see your posting on a older thread. Tell us your full story on your own Post! Glad you found us.
 
my daughter is heading to the childrens hospital for her scope tests this month but they changed her meds to a lower dose med pentasa (not doing anything for her) she is now weined off of the entocort which she was getting headaches from but the pentasa does not seem to be doing anything for her she also has severe joint pain that tylenol does not work for she is only 15 i don't want to go to harsh on meds we have been getting a homopathic pain killer that i don't think is doing too much but we are looking at adding some codine if it will work so she can go to school more she tried the marajuana route helped with headaches only but she does not seem to get them much since quiting the entocort. the joint pain is a real hinderance to her i am thinking the doctors will be changing her meds again when we go later this month.
 
So sorry your daughter is having problems. I am surprised she got lowered doses. She maybe need to see a Rheumatologist to help with the arthritic pain. Headaches could be from Pentasa, I am on them and I dont have that problem. Could be something else. When is her scope and what Country are you from? Best of luck for you and her.
 
We are in BC canada her dose was lowered because she initially seen an adult specialist and was referred to the childrens hospital she was getting the headaches from the entocort which she is weined off of now but the pentasa does not seem to be doing anything for her. i have a call in to the specialist and hope that they will be able to help with the pain she is in but that can take time too i had called last week about a test she is supposed to get done closer to home and have not heard back about that yet. so i am off to the pharmacy to get her some tylenol with codine and see if she can tolerate that. thank you jettalady just frustrating trying to get this under control.
 
Ive been living with Crohn`s for 35 years now and could see how some people could become tolerant and eventually addicted if not carefull in using them. I myself have tried numerous pain med`s over the years and currently take 20mg of oxycontin 3 times daily,percocet 2-3 times daily. I see my doctor regularly and have blood tests done every 3 months.
 
Hello GNC Crohn's Man..
I liked your post..
It was the whole fact about addiction what you posted.
Thanks for sharing it!!!!
 
Wait wait wait I'm confused. So are you not supposed to take pain medication when you are having a flare up? It can make your intestines explode? Why did the ER doctor not tell me this?!!? :confused2: When I have flare ups the only thing that gets me through is hydrocodone.
 
um ok so i feel like absolute crap for the past 12 hours. im thinking that my system is COMPLETLY rid of the fentanyl now, i took off the patch on wed and supposedly it takes 34 ish hours to completely dissappear.

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

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

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

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

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

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

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

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

I've always looked at it this way: The Crohn's Disease changed my life in so many ways that if there were a way to "get back" some control - I was going to do so. Well, seeing a Pain Management doctor helps me do that. Other people feel differently but I don't see the point to suffering so long as the Addiction aspect is regularly monitored.
 
Kello82:

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

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

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

Accordingly, I had to METHODICALLY drop 25 MCGs every 3-6 days (under the supervision of the Pain Management Doc) and it took a few weeks until I was down to ZERO. If you try to do it any other way - you will experience Physical/Mental withdrawal. Depending upon how much you were on - and for how long - will determine the severity of the withdrawal symptoms. Clearly - you can't go from 300 MCGs or even 100 MCGs to Zero without weaning down. So, PLEASE be careful and take all of thsi into consideration and speak with your doctor. If you do it Methodically (i,e, 25 MCGs every 3 days) - it is PAINLESS. But if you try it any other way - it is MISERABLE and could land you back in the hospital (or dropping a deuce in teh back of a taxi cab!) Good luck and please feel free to contact me directly if you have more questions.
 
Never ends, does it?

Hello everyone! I have had crohn's (diagnosed anyway) for just over 8 years. Had a temporary ileostomy and a re-section as my welcome to the disease. I was in remission after that for a couple of years and then my joints started aching. I had no idea what that was all about but found out later that it was another blessing of this disease. Gotta love it.
Since then, abdominal pain, joint pain and ongoing everyday things. I have been on and off narcotics for the last few years. It controls the pain so I can still work and be a functional mother to my daughter. In any case, a couple of weeks ago I went to the drug store to get Claratin as my eyes were getting watery and swollen and I figured it was allergies. Strangest thing though.... After taking it for a couple of days, my Crohn's pain has all but disappeared. Ibuprofen occasionally but nothing else!
Started doing some digging on this craziness and it turns out antihistamines are in fact used to treat crohn's, parkinsons and MS. I don't know if it would work for everyone but I couldn't keep it to myself!
Sorry for the long post.. I hope this might help another sufferer like myself
Take care everyone!
 
Just a quick warning- Ibuprofen is not recommended for use by people with Crohn's as it is a nsaid and can irritate the stomach and gut (like aspirin). I was told to stick to plain paracetamol for mild pain relief.
 
Skinsfan1229 said:
There are a lot of meds without codeine. Do you even need something that strong if you were only taking t3's in the past? Its highly unlikely for someone in real pain to get addicted also.
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I do not believe this to be true. If the pain lasts a long time and the patient needs to medicate the pain away, they are inevitably going to become at the very least somewhat Dependant on that med.
I used to get prescribed percaset for my stomach pains during flare ups, but started feeling like I needed them even when the pain levels went back to normal. Now Sadly I am to afraid to ask for pain killers and just bare through it.

To the original poster, I am sorry you are still having headache's. I do not know if yours are similar to mine or not, but I rate headaches of this nature right under the pain of crohn's except less bearable because it is the head that hurts. Then I get even more nauseous and sick. Sometimes I can lay down in a completed darked out room and it will pass, but usually I end up in a cool temp tub soak with a trash can next to me for the up-comings of my stomach. So I really do empathize when I say I am sorry you have to suffer through this pain on top of everything else.
 
mneilsen2084 said:
Is paracetamol like Tylenol?
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Paracetamol = Acetaminophen = Tylenol. It does not pose the threat of bowel irritation that the NSAID's do (Naproxen, Ibuprofen, Aspirin and the COX-2 inhibitors like Celebrex) but in doses not all that much higher than typically used for pain, it can be hard on the liver.
 
The problem I have with Tylenol is it doesn't do anything for me. It doesn't have the anti-inflammatory properties like ibuprofen. When you need relief from the pain, you take what works. I haven't noticed any ill effects on my gut from the ibuprofen. That's just me though, not saying anyone else should use it.
 
That's fair enough, just thought I ought to say something in case a) you weren't aware and b) a newbie might read it and think Ibuprofen is safe to take for everyone.
 
Oh no, Three years ago, when I got diagnosed it was because I had been taking 4-6 Ibuprofen a day for back and stomach pain. It made me pass blood so bad that the whole toilet was red. I was not sure what meds I could take though. :)
 
HospitalPatient said:
Kello82:

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

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

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

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

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

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

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

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

bwahaha, hey we chatted on twitter yes?? hospitalpatient?? watched your vid! unless there are two people who use that moniker but i mean that would be crayzey.
 
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May 31, 2010

Kello82:

Greetings.

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

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

I am surprised that you being on Percocet didn’t help with the withdrawal – even a little? I also didn’t know that Fentanyl comes in a smaller Dose than the 25 mcg Patch? It is amazing how potent even that 25 mcg Patch can be – which you learn when you try to stop cold turkey. In any event, I hope you are “thru the woods” with the drug withdrawal and have had the chance to enjoy the weekend.
 
mneilsen2084 said:
Oh no, Three years ago, when I got diagnosed it was because I had been taking 4-6 Ibuprofen a day for back and stomach pain. It made me pass blood so bad that the whole toilet was red. I was not sure what meds I could take though. :)
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Now that you mention it, before I went in hospital the first time I had a really nasty virus. I had the worst sore throat ever (worse than tonsillitus) and was taking 6 ibuprofen a day for 2 weeks (and cocodamol which is paracetamol and codeine). And I was told to gargle with soluble aspirin. I always assumed it was the virus that triggered my symptoms but it was probably the nsaids.
 
Rebecca85 said:
Now that you mention it, before I went in hospital the first time I had a really nasty virus. I had the worst sore throat ever (worse than tonsillitus) and was taking 6 ibuprofen a day for 2 weeks (and cocodamol which is paracetamol and codeine). And I was told to gargle with soluble aspirin. I always assumed it was the virus that triggered my symptoms but it was probably the nsaids.[/QUOTE

Yeah I just barely learned about NSAID's recently. I had never known why people with crohn's cannot take certain pain meds.
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Hey, do not feel bad, some of the ER doctor's I've seen don't really know about crohn's, and its their job to know medical information like that. :)
 
When I was 16 I got addicted to Morphine.Sadly it was even in the hospital.The nurse misread something and for every 5mins. I was getting 1mg through the push button.They weaned off with Vicodin at 725mg and then I became addicted to that and was sent home.My mom ended up cutting me cold turkey.She locked it in a safe.I would be sick for a few days and the pain for me was baad even though it wasn't pain from the Crohn's it was that gut wretching feeling when you get really agitated.Eventually though I did better.Now I take Tylenol and being that my husband was in the ARMY the Military hospital liked giving Percocet for any pain small or big.But I did good having the help from husband I only took it when need be.
 
hey ok so the past week or so i have been taking about 1 5/325 perc a day. which is great! the pain has not been affecting me as much, before this some days i was taking up to 3 tabs.

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

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

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

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

I'm guessing I had this reaction because I was not at the time nor have I ever been on high doses of opiates. This thread was too long to read every response, so my bad if somebody already suggested this.
 
Ahh pain medication. My opinion of it has changed a lot since diagnosed. At first I was popping them like skittles and felt almost "normal." after my symptoms started clearing up though, I realized I was taking them even when I didn't need them. Basically I was dependent on them. Now I will take them only in dire circumstances where I feel unbearably bad. It's very easy to become dependent on them even with chronic pain. Also, I worry that they're rough on my stomach since I had gastritis before.
 
GNC Crohn's Man;13499Remember if you are having intestinal pain then thier is only so much you can do... You can not take NSAID's they will cause your crohn's to flare... [url said:
http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202743.html[/url]
If you have active inflamation in your bowels then you CAN NOT have narcotic based pain meds...

Anything that is narctoic based will cause intestinal slowing and blockage and will only make the problem worse... You may feel pain free, or at a lower amount of pain for a few hours, but be in even worse pain 4 hours later... Thus you take another pain pill to killl the pain that the pervious pain pill caused you as it passed through your body... Very fast way to get addicited, hospitilized, or even dead if you do this... Yes your intestines can rupture.... If you have lots of pressure (if you feel super bloated all throughout your intestines and stomach) then do not take a narcotic based pain med. Very much so if you are then going to take a phengran and try to eat (you may be starving due to a high prednsione dsages). If you do this then your intestines can rupture... If your instestines rupture then well you will either die or be live with a very very very not pretty pitcure of what is left of your intestines..
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:eek: .... :eek2:
wow... this is the toss up i've been doing... (that is until I ran out of pain meds) ... use hydrocodon/apap for pain every 4 hrs when pain would strike up. then when the nausea sets in i'm using promethazine (which i think is phengran)... and I am bloated with pressure as we speak, and haven't had a bm since tuesday (though i went to the er and they just sent me home after doing a liver/thyroid blood test and pregnancy pee test on me) (no they didn't even examin me.. i requested a ct scan and they said in my life time with crohns i will have to have many of those, and they aren't going to give me one, because of all the radiation. I goto my primary doc tomarrow (that's IF medicaid transportation doesn't leave me hanging again). :ybatty:
I'm glad i opened this thread up and read it!
 
Hey everyone! I just wanted to talk about what has worked for me.

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

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

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

Also, this place was great for the recipe: marijuanasaveslives.org. It was founded by a man named Brett who says he "saved" his wife Keri from her Crohn's by this milk. He's really sweet and will talked to you in a hushed voice for an hour because he's at work :) Happy days! Nikki
 
I just started to go to a pain management specialist about 4 months ago. Sadly there is not much more that they told me that I can do other than what My DR.s have me doing right now witch is percocet and humira. I have also been in Tramadol (did not work) as well as tried Marijuana once I did not like it. But I am just glad to know that I am not the only one that is on pain meds for crohns. I also want to ask if anyone feels like they are looked down upon for taking pain meds on a regular basis such as percocet? Maybe it is just me.
 
I am trying to help figure out what is good/bad that my mom is taking for Crohns and Ulcerative Colitis. She is taking Darvocet (around 8 pills a day, 3-4 just to get thru the night) and sometimes OxyCodone or Tylenol 3. I am very worried that she is OD'ing on tylenol.

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

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

Thanks!
 
Here goes lol
I was on codeine 30 mg ( no paracetamol) for 6 years !! For diarrhoea as I was told ibs ibs ibs it was the only thing that worked to slow me down, I started on 2 a day and ended up on 8 to 10 a day for the d and pain because I couldn't function without them ( not addicted but dependant for the relief) when the pain was too much I'd end up in the hosp again no tests ibs u know the drill!!
I stopped the codeine myself cold turkey worried they were causing my pains, I felt like I had the flu for a week and couldn't sleep etc I won't go into detail !! I ended up in hosp about 5 times that month due to pain and no relief so I was handed back codeine and realised they did work and weren't causing my pain but I was still tolerant to high doses and needed the max a day for relief and still ended up in hosp, thankfully this is when tests were done and I was diagnosed with crohns and given proper pain relief I stopped codeine an switched to tramadol and they are fantastic for me at the moment and when they stop being effective I will ask to switch again to something else.
I hate having to take them I hate the looks off the receptionist at my doctors, I hate people commenting u take too many tablets etc but I don't see why I should suffer in pain all day and not be able to go out or look after my kids or cook a meal, I don't care if I get addicted/dependant I only take them as needed and always will if I need to.
No one should suffer in pain what kind of life is that ? If your in hospital in pain they give you pain killers so what's the difference taking them at home when in pain?
And if my doc took me off them and I was genuinely in pain I would find a way of getting them if I had to in my eyes no one should suffer on pain you won't get a medal for it
Jen XX
 
EyesofThunder said:
I am trying to help figure out what is good/bad that my mom is taking for Crohns and Ulcerative Colitis. She is taking Darvocet (around 8 pills a day, 3-4 just to get thru the night) and sometimes OxyCodone or Tylenol 3. I am very worried that she is OD'ing on tylenol.

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

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

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

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

<3
 
I asked her what she is taking now, what do you find that helps diet wise? Anything that is very helpful?

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

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

Thanks so much!
 
EyesofThunder said:
I asked her what she is taking now, what do you find that helps diet wise? Anything that is very helpful?
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For the most part, a low-residue diet usually helps me during flares. Google that and you'll get an idea of what to stay away from.


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

I hope everything works out! This is a great forum for advice. I wouldn't be surprised if you found other "caretakers" on here for advice about your Mom. As for you, I hope that the ulcer never comes back. And red pepper is something I only do when I'm brave. :)
 
I tried on hydromorphone, hydromorph contin, oxy contin, morphine, tylenol, and ibuprofen. The ibuprofen put me in bed in dire pain for nearly a week. Tylenol hardly does anything, while morphine makes my pain worse and oxy contin is hardly effective. Hydromorphone (dilaudid) and hydromorph contin (slow-release, long-acting dilaudid) are the only ones that worked for me, and in so, they got me hooked pre/post-op, so I'm experiencing a bit of withdrawal now that I'm coming off it, but nothing too serious. Some shakes, anxiety, sweats, chills, sneezing, but I'm sure they could be much more intense than they are so on complaints.
 
I'm wondering if anyone has been addicted to Dilaudid? Whenever I go to the hospital for a flare up they give me Dilaudid and at first it works wonders and takes the pain away but I've noticed after a few days it takes a higher dosage for the same effect. Does this mean I'm addicted or maybe my body is becoming tolerant to it?
 
Yes Jess as my post immediately before yours stated, I am. It's the hydromorph contin (long-acting) that I am referring to however it has been both (including hydromorphone) at one point. I also required consistently higher doses to achieve the relief I needed
 
Hi Crohnadian,

Sorry I must not have read your post thoroughly. I was kind of skimming towards the end of the thread since it's long. But you bring up a good point. It's scary that the very drugs that bring us relief can also pose a danger. Now whenever I feel a flare up coming on, I'm nervous to go to the ER because I know they're going to give me Dilaudid and the cycle will begin all over again. But I don't see any other way around it...
 
I've found the more I worry about it the worse it is, so I try to put aside the fact that I can become addicted because then I stress out too much and get nowhere lol.. my parents were the really worried ones- especially my mother- but the withdrawal really wasn't as bad as I had suspected
 
That's true. I've done some online research about Dilaudid and addiction and the results were crazy. Apparently Dilaudid is equivalant to heroin, in the way that it gives you that euphoric feeling and is hard to ween off. That's scary. I guess the next time that I have to take it, I'm going to ask for the lowest dosage necessary.
 
Dilaudid is the only thing that seems to work for my SO as well. He just had surgery and had his PCA button for 8 days..sure enough he went into massive withdrawal when they switched him from IV to oral the day prior to his release. He is doing okay now- but pretty much needs to take it every 4 hours (4mgs). We hope to start weaning him down later this week. He used Suboxone for pain management the last couple of years- weaned off for surgery, so we expect to switch him back to that to get off the narcotics. Then he will have to wean off that...again. But sometime soon- he should finally be pain free for awhile so I hope it won't be quite as tough this time.
 
I'm so glad I stumbled into this forum. My husband of 20 years has had crohn's disease for 30+ years. He's had 3 resections and only 1/3 of his small bowel left. He only has occasional flares, but because of the resections has short bowel syndrome and all of the malabsorption problems. In the past he was treated heavily with prednisone and has many of the side affects associated with it. One of the biggest problems now is the addiction to the pain medications for the reactionary arthritis. He has taken opiads for more than 25 years. Started out with tylenol #3 and slowly progressed to stronger and stronger meds. 4 years ago he went on the methadone to get off the oxycontin. 3 years ago we moved out of state, had to find new doctors etc. The new pain specialist kept him on the methadone but added the vicadon for breakthough pain. The addiction is once again bad (still not close to when he was on the oxycontin though). I hate having our lives controlled by pain medication. Reading these posts have helped me maybe be a little more understanding that he may actually be having pain that warrents the meds.
 
I'vwe never been prescribed pain meds (other than getting htem in the hospital).....unfortunately, I have an adverse reaction to Morphine ('Red Man's)....AND am allergic to Dilaudid!....as in anaphalxyis.....thankfully when I found out I was already in the hospital!

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

GG
 
My husband has made the comment that he'd rather have better quality life with a shortened life span than a longer life being incapacitated without the pain meds. He actually functions pretty well on the prescribed doses of Methadone and vicodin. But be warned - if you are in a traffic accident and they find out you are on prescribed narcotics you can and most likely will be charged with DUI. My husband found out the hard way. He was in an unfamiliar city and went down a one way the wrong way on his motorcycle and had a wreck. It was very costly.
 
I would never point my finger at anyone for using or abusing pain meds because of Crohn's disease. I'm not in their shoes and I would not tolerate someone telling me I should not take pain meds because of my medical problems. No one should judge someone else for it.
 
When i am in pain i usually take Paracetamol painkillers.

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

If you are taking pain meds for a few months straight, you will probably feel withdrawal effects if you stop cold turkey.... best bet is to wear yourself off the painmeds. take less n less everyday. and you will be able to have much less withdrawal effects when you stop taking the pain meds.
 
mneilsen2084 said:
I do not believe this to be true. If the pain lasts a long time and the patient needs to medicate the pain away, they are inevitably going to become at the very least somewhat Dependant on that med.
I used to get prescribed percaset for my stomach pains during flare ups, but started feeling like I needed them even when the pain levels went back to normal. Now Sadly I am to afraid to ask for pain killers and just bare through it.
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It is actually true that people in real pain who are on a reasonable dose of pain relief medication i.e. it relieves your pain, but not on enough to make you feel high, most likely will not become mentally dependent.

Physical dependency happens with quite a few medications, not just narcotic pain relievers. So, in my opinion, this shouldn't stop someone in real pain from seeking help.
All drugs carry risks (Just read the warnings on Imuran or Remicade! I always get a sinking feeling when I read the pamphlet on my Imuran.).
For me personally, my last surgery caused so much structural damage that I wake up every morning at about an 8 on the pain scale. I have always been able to handle a certain amount of pain, if I knew it would END at some point. This pain has not lessened at all in the last year, and I think if it weren't for lortabs, I would have gone insane by now!
 
I remember very little of when I was suffering with a HUGE flare when I was 8 years old. The one thing I do remember was a friend who lived down the block came to visit me. I'd been out of school most of the school year and it was spring, so she came over. While she was there I got a pain. My pains at that point (one of the few things I remember vividly) used to curl me in a ball and leave me screaming at the top of my lungs. By the time my mother got to the living room, where we were hanging out, she was gone. Needless to say she ran all the way home in absolute terror and never spoke to me again - even after I was back in school.

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

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

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

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

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

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

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

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

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

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

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

I was diagnosed with crohns when i was 10. I was addicted to demerol by the time i was 13. I finally found an addictionologist/anesthesiologist who prescribes when I need medication. They do use buprenorphine for addicts who need pain relief or other meds if someone holds them for me. I know it sucks but diet is the best answer--mike
 
I've been trying to not see a pain management doctor where I live because the local ones have a bad tendency to fire patients who aren't going to recover or are chronic disease cases.

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

Pardon typos - bad cataracts and the kitten is helping me typo. Plus this is a wickedly intense flare - up and I've been holding on by my fingernails till they bleed.
 
@heirloomveggies
Aww.. Well, the pain meds I have can constipate me if I take any. Are the constipating drugs helping your flare at all? Will your internist prescribe you any pain meds? My GI has no problem sending one out to me for Tylenol 3 or Loratab 10. Also, would the pain meds be smart for your heart? That's an area I'm only starting to learn about.
 
I'm on Carafate, too, which is constipating the dickens out of me, or not out of me..hm..Dr says nothing stronger than 50 mg tramadol 4 times a day because of really low bp/heart rate/heart failure, mvp and whatever else they can't fix. Then if I go to the ER or another doctor, I usually get the "Well, your pulse is only 72 (usually in the low 40's) and your bp is just a little elevated, so you can't be in much pain." Ha ha...right. Mu=y usual bp is lin the "have we got the cart handy" range.

After reading so much here on the lists, I'm having to re-evaluate my stand on not going to the pain managment docs. I don't want to, but anesthesiologists they should be accustomed to medicating people with low vitals. There has to be something better than a handful of tylenol, asacol and tramadol for pain management for us - please say there is. I'm no way ready to check out of life but thinking of another 20 or 30 years of this degree of pain is more of a challenge than I'd opt for.
 
@heirloomveggies
What do you have to do to get your heart better? I'd try to focus on that, I guess. I've only recently had heart problems lately due to my Grave's, but it seems in the opposite direction of you. My resting heart rate was 80-90 for a little while. But if one doctor says no to better meds because of your heart, I wouldn't try to find someone who will say yes if they don't know your entire health history.
 
Addiction

I am an alcoholic and pain med addict that has been sober for 11 months now thanks to AA....I also have Crohns Disease which is where the pain meds started (hydrocodone). We pain med. addicts do not want to feel ANY pain...whereas "normal" people accept that pain meds don't take away all pain. Please remember that addiction is a disease of the brain...it isn't a moral issue. I was VERY frightened of pain when I first got clean. However my Crohns has gotten 90% better since I cut out booze and pills. I have had several sugeries since I've been sober. The first few I got by with Toradol, no problem. The LIFT procedure I need percocets. I had my sponsor hold on to them and dispense then to me, and I stopped taking them after day 3. I also used suboxone to get off the pain meds and are on them again for in between surgeries. It stops pain meds from working in between surgeries as a precaution, and also can help a bit with pain managment. I know it's frightening to think of being in pain with no help, but there is help and I was desperate enough to get clean to take the leap of Faith. I know someone else suggested you take valium for pain but valium has nothing to do with pain other than knocking you out. Plus, those of us that have issues with pain meds (that it can aid those of us in mental pain..for a certain amount of time), really shouldn't be messing with valium or anti-anxiety pills as they are just as addictive. The other good thing about suboxone is it is great at slowing the bowels. I hope this helps. You have helped me tremendously feel not so alone. I don't have anyone in AA to talk to about Crohns and vice versa so this means the world to me!!! God Bless!!
p.s. - Suboxone comes in strip form lessening the chance of abuse. I would go to a substance abuse shrink instead of a pain managment center..they don't seem to give a shit about addiction and getting mentally and spirtually better. I have not heard very good things about methadone...they potential for abuse is extremely high.
 
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ALL painkillers have risks. Paracetamol/Tylenol are having their labelling changed to new and lower recommended daily doses. Doses must reflect liver function, as they are hepatotoxic and an injured liver is less capable of handling them safely. Long term [1 year] they can cause liver and kidney problems, and can cause liver failure.

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

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

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

For my part I get uncontrollable severe pain from acute pancreatitis. I cannot do anything when it happens. I'd be happy to have an effective pain med.
 
Amen. I was hospitalized for a month with acute pancreatitis and they kept me nicely medicated but once I was sent home everything changed. I cannot imagine you going through acute pancreatitis outside of a hospital with lots of good meds. Thatis just horrible.

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

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

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

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

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

Locally both the hospitals, cardiology and gastro are sewed up tight by one hospital, one cardiology practice and one gastro practice. As a disposable person, it is pretty impossible to get decent medical care. Of course that is just my opinion!
 
Wow, my newbie post was just asking if there was anyone else out there that had Crohns DISEASE and the DISEASE of addiction...never said anything about anyone else taking narcotics, including stating any judgements for taking them...it was simply a personal choice I had to make. I am not someone who thinks Docs should not prescribe narcotics at all...they just shouldn't presribe them to me..ha ha. :)
 
I started seeing my pain management doctor before I was diagnosed w/ crohns.I didn't know what was wrong with me.Only knew that I hurt all the time.I have to give him credit for sending me to all the right places.I wasn't diagnosed with anything at all when I first started seeing him.After seeing specialists, I was diagnosed with arthritis in my spine and hands (my knees I'm sure too, just not dxed yet) Fibromyalgia, a severe prolapsed bladder, severe vitamin deficiencies like calcium and vitamin D.I don't know.Seems like I have a huge list of medical problems now.
He started me on a very low dose of oxycodone.Then I switched to a low dose of Fentanyl.After my crohns surgery (12 inches removed!!) I was up to 15 mg of oxycodone 6 times a day and a 100 mcg Fent patch every 48 hours!!
Like others my tolerance to pain medication was through the roof.I'd freak out if I ran out too early, or couldn't get my refill on time.After a couple of years I had enough.I stopped seeing my pain doctor and started seeing another that I told I didn't want to be on that stuff anymore, but needed something.
I was RXed tramadol (max dose of 8 day) and feel so much better just being on these.
Just a warning to anyone on tramaol.They are suppose to be non-addicting.This isn't true.They are addicitive just like any other pain med.Tramadol has serotonin in them, so you must wean yourself down and do not stop cold turkey.
I found this out the hard way. ;)
Good luck to all those in pain.
:)
 
What works for me is Dilaudid for break thru pain and Fentanyl patches for every day pain because of the vomiting and the diarrhea I have on a daily basis. I have endometriosis as well as fibromyalgia and a back problem-- scoliosis.

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

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

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

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

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

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

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

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

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

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

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

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

Gotta admit, high drug use slows bowel motility, its designed for crhons.
 
Wow that's a lot of strong pain meds an I thought mine was over the top lol

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

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

That was 2 years ago an then I've gone to tramadol to dihydrocodeine at high doses , I can't wait for the day I don't need them any more but also dread it b coz of the withdrawal !
 
I am also on a long list of drugs and take four 10 mg hydrocodone a day for my pain. I am also a little worried about the day I need to come off of these drugs. I am not so worried about coming off the hydrocodone. My dose is relatively low, but I am worried about the other drugs such as Cymbalta, Buspar and Sertraline. I am wanting to quit the Sertraline. I am concerned about all the serotonin. It is not causing any problems but it still worries me. I have heard horror stories about coming off these kinds of drugs. So my question is has anybody had any experience quitting these kinds of drugs. I have not brought it up to my doctor yet, but I plan to in march when I see my doc again,
 
Jenny06xx said:
Wow that's a lot of strong pain meds an I thought mine was over the top lol

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

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

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

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

Look at that horrible gateway drug, pot, kills none yearly, has been used by 85% of politicians and cops. When made illegal in 1932 the only group that opposed the law change was the AMA as tincture of marijuana was used in no fewer than 230 patent compounds. The geniuses replaced the THC with opiates.
 
Paladin said:
The american anti drug crusade (and canadian) is like religion . . . they instill an unnatural fear of the unknown, how any use of coke, pot or a recreational or prescribed drug will cause addiction and ultimately death.
Click to expand...

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

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

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

Everyone is different, and there are many factors to consider when looking at drug use.
 
I'm currently on Butrans Pain patches 10mcg per hour - they're basically morphine and I wear the patch for a week at a time, and I also take 2 500mg Tramadol tablets. I can have more Tramadol if I need it but I try and stick to the 2 unless the pain is too unbearable.
 
I only use medical marijuana now as before is was diagnosed with crohns I overcame an opiate addiction. I used to take whatever I could get, 200mg morphines, 80mg Oxy Contin and finally Heroin. Yeah, Oxy withdrawal is worse than heroin I've withdrawed from both too many times. Oxy is synthetic. I finally went on methadone for 6 months and never looked back (after methadone withdrawal). I have 3 bottles of viocodin sitting unused and tramadols. I use marijuana now and hope I never have to experience opiate withdrawal ever again.
 
KWalker said:
The biggest thing about recreational drugs is that there really is no telling what is truely in it. Dealers will even "lace" the drugs with more addictive drugs to keep the buyer coming back. And simply people are just stupid now and are first off dumb enough to use, but then also dumb enough to mix. Last year one of the kids I went to school with was at a party and was so messed up he starting drinking methol hydrate (paint thinner). Long story short, he passed out and he isn't here today. He never did wake up.
.
Click to expand...

Pure fantasy. give links and examples.

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

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

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

PS I've never heard of anyone dying their first time on coke or E. in fact I think deaths from those drugs are rarer than aspirin deaths. Vioxx killed 35,000 innocent people.
 
MY Dr WONT give me NOTHING!! NOthing! I don't know why. I'm in pain all the time! I bleed about a CUP OF BLOOD THROUGH MY RECTUM about every 7 - 10 hours (it;s actually slowing now) Also I had a biopsy done and endoscopy and it showed severe inflammation that has been here for the last yr. ANd still my dr wont give me anything. I'm in pain all the time and still nothing.. Why wont they give me anything?? This really makes me mad.
 
JohnnyO said:
I only use medical marijuana now as before is was diagnosed with crohns I overcame an opiate addiction. I used to take whatever I could get, 200mg morphines, 80mg Oxy Contin and finally Heroin. Yeah, Oxy withdrawal is worse than heroin I've withdrawed from both too many times. Oxy is synthetic. I finally went on methadone for 6 months and never looked back (after methadone withdrawal). I have 3 bottles of viocodin sitting unused and tramadols. I use marijuana now and hope I never have to experience opiate withdrawal ever again.
Click to expand...

I can use those! :blush:
 
Do u have a gastroenterologist or family doc? Ask ur primary care doc and if they don't give u anything ask for a pain management referral. Redundancy, I know, but some doctors are fearful of the DEA that controls these substances. I feel for u as I was bleeding as much oct 2010. Get the inflammation under control via meds then find natural way to figh inflammation. Cannabis is great for pain and available in Washington.
 
maria said:
MY Dr WONT give me NOTHING!! NOthing! I don't know why. I'm in pain all the time! I bleed about a CUP OF BLOOD THROUGH MY RECTUM about every 7 - 10 hours (it;s actually slowing now) Also I had a biopsy done and endoscopy and it showed severe inflammation that has been here for the last yr. ANd still my dr wont give me anything. I'm in pain all the time and still nothing.. Why wont they give me anything?? This really makes me mad.
Click to expand...

Gi docs never want to dx pain meds. better off asking a GP
 
JohnnyO said:
Do u have a gastroenterologist or family doc? Ask ur primary care doc and if they don't give u anything ask for a pain management referral. Redundancy, I know, but some doctors are fearful of the DEA that controls these substances. I feel for u as I was bleeding as much oct 2010. Get the inflammation under control via meds then find natural way to figh inflammation. Cannabis is great for pain and available in Washington.
Click to expand...

I have both. My family doctor acts as if hes afraid he's gonna hurt me and always tell me to ask my gi and my gi says pain medication wont do anything for me..He tells me to just wait for my reversal but THey told me they were gonna do that 8 months ago?? I've tried cannabis and it doesnt do anything for me:( I wish!
Sometimes its to the point where I just want to lay there and not move becuase It's all i think about..My drs dont seem to care much. I awlays tell myself it's just in my head and if the drs arent concerned than I shouldnt be but?? I'm getting tired of it.
 
Does your primary care doc suck? If so, get a new one and shop around till u find one u like and will take good care of you. It's unconciounable what both doctors said. In fact I'd look for a new GI doc as well. Ask them today to please help treat your terrible pain. Tell them you are bleeding out the ass and in terrible pain. If they don't immediately say "what pharmacy are u with and what is their number" tell them that you are going to find a doctor who is compassionate enough to not let you needlessly suffer.
 
JohnnyO said:
Does your primary care doc suck? If so, get a new one and shop around till u find one u like and will take good care of you. It's unconciounable what both doctors said. In fact I'd look for a new GI doc as well. Ask them today to please help treat your terrible pain. Tell them you are bleeding out the ass and in terrible pain. If they don't immediately say "what pharmacy are u with and what is their number" tell them that you are going to find a doctor who is compassionate enough to not let you needlessly suffer.
Click to expand...

Oh I tell them.. Ive even went to their clinic and sat an the toilet and had all the blood come out and showed him.. He was like wow thats a lot of blood.. I was like yeah you think?? I bleed this all the time and it hurts. Please help me.. Ive cried and everything.. He's the only GI my insurance will cover. :(
 
JohnnyO said:
What insurance co? Tell them he isn't treating ur severe pain. Get a new primary care doc.
Click to expand...

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

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