Pain medication and addiction in Crohn's Disease

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Jenny06xx said:
If you withdrawals are still bad ecu drummer anything opiate based will ease the widrawals an let u come off more slowly .
I see your in america so I have no idea what's over the counter there but I thought tramadol was over there.
The thing with me is I've taken more of my tablets for legitamate pain an so I end up too early for my script as you do but I told my gp this was what was happening an he still wouldnt refer me to the pain clinc ( he's going to now coz I kicked off lol)
He said you have crohns right ? I said yes an then he replied well your always going to be in pain so what do you expect me to do ?
What a twat so I should just put up with the pain until I end up in hospital each time !
Hes going to refer me when my xray results are back good or bad thank god
He says he hates dihydrocodeine an it should be taken off the Market , that's what I'm up against !
So I get penalised because he hates the stuff that somewhat relieves my pain !
I'm due my script this week but he added up the days wrong an put tablets not due till 18 th don't give early !
So I'm gonna look like a druggie if I try an get them on the date there actually due which is a whole week before the date he put down idiot.
I'm hoping the pain specialist will help me by changing my tablets and referring me to whoever I need to c , I just hope they don't think I'm an addict I'm dependant yes but not an addict !!
Can anyone else put up there story of the pain clinc ?
Jen xx
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Get a new doctor ASAP. He's a douchebag.
 
ECU_Drummer said:
Tramadol helped me with my pain, but I will never take it again. EVER. My body became dependent on it. I recently had to go on antibiotics for about a week for a minor infection and they exacerbated my flare temporarily. I had to take more tramadol to account for the pain. I was originally ordered to take 3 50mg/day as needed but was taking 4-5 depending on how I felt. I ran out of my script early and cannot have them refilled until 9/14. It has been 72 hours exactly since my last dose of tramadol and I plan on not taking it ever again. The withdrawal symptoms are hellish- flu like symptoms, temp changes and a feeling of your skin crawling. They have toned way down since yesterday morning and I think I'm on the other side now (thank god). I hate the feeling of having a dose run your life. I was constantly worried about when I would take my next dose of tramadol. I feel that way to an extent with my dicyclomine, but I'm ok with that since its not an opiate like tramadol. I felt so ashamed going through the withdrawal symptoms, I felt like I was some sort of junkie. In the end, I'd rather deal with the pain of crohns and learn how to properly manage it rather than rely on some pain killer that can do me more harm than good.

If I was told tramadol could be addictive and cause withdrawal symptoms when coming off of it, I would have never taken it.
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Tramadol withdrawls can be a double-whammy.You get the classic opiate withdraw symptoms on top of serotonin WD symptoms.A lot of people don't know trams have serotonin in them.

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

Here is an interesting read on immodium.It does help.
http://en.wikipedia.org/wiki/Loperamide
 
I'd get on suboxone if you are really addicted to opiates or use some benzodiazepine to help withdrawal symptoms. Clonodine (BP medication) helps withdrawals too. Use at your own risk or advice of doctor and research the meds thoroughly. I've been through opiate withdrawals and it can be awful but I doubt tramadol withdrawal is as bad as oxy, morphine, or heroin. Good luck!
 
I haven't gotten addicted but I can certainly understand how it happens. I feel so good without the constant pain when I take Dilaudid that I'll find myself reaching for it even after the flare improves. I keep a sticky note on the bottle to remind myself not to use it unless I'm in pain; it sounds stupid but I need the wake-up call.
 
Does anyone know how many percocet I can safely take in a day (the absolute most)? I'm having surgery next week and in a lot of pain so the doctor prescribed me 40 tablets which I have to try and make last till Monday which should be okay. On my bottle it says take 1-2 EVERY 4 hours but I tried looking online (which is useless) to find out how many I can safely take in a day and one link said a max. of 6 a day! If I were to take 2 every 4 hours that wouldn't even get me half way through the day before I reach 6.

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

Any opinions? Thanks guys!
 
Sorry I don't have the info on Percocet-I do know more that six will cause liver damage, but it varies from person to person as to how quickly that happens. I would say you need a stonger painkiller like Dilaudid if you are still in that much pain. Maybe the dr. will give you a scrip since your having surgery anyway.
 
I know that, but was wondering the max I can take in a day...and I am way too much pain to be drinking alcohol right now haha. I only ever take 2 percs at a time every 4 hours (prior experience) but I just needed to check because in the mean time before surgery I'll be trying to go to school the rest of the week. If you've ever been to University they use the cheapest/hardest chairs you could possibly ever sit on so if I'm going to sit through consecutive 2 hour lecturs, I need to make sure its going to work.

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

Thanks for the help!
 
I'd avoid the acetaminophen and ibuprofen as that is what hurts your liver, not the oxycodone component of the Percocet . Smoke some weed if you have it or get a pure opiate so you can take a higher dose.
 
Hello to all of you. I have been on fentnyl, dilaudid, MScontin, oxycodone, and Demerol in the past. For me personally the opiate meds caused more suffering than they alleviated. The doses had to be increased consistently because of tolerance. Before I started using narcotics for pain I had no idea of the addiction possibilities. No one explained it to me. I just could not stand the pain. I have had so many bowel surgeries that I barely digest any food and don't want any more taken out of me. Anyway, I became physically and mentally addicted to opiates and it was what I think of as hell. I did not have any idea that this may happen before starting them.

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

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

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

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

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

Thank you for reading my post. I hope that others find some relief from this nasty disease any way they can.
 
I'm not sure how many people check this thread, but I thought I'd add to it.

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

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

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

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

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

Sorry for the babbling, but life has got to be better than this! Sad thing is, I know I will need opiates again someday and will need to do this process over and over again. I guess it just a part of dealing with chronic pain in a medical society that can't decide if people should have pain relief or worry about those who really need it and the federal regulations these pain docs are having to deal with. Forgive me if I didn't make a lot of sense, Im on little sleep for too long now :sign0085:
 
I have MS, and it came first, then Crohn's came last year in June. I have been told that having one autoimmune disease, makes it easier to get another. I feel like, no, I know I am addicted to pain killers. I have been taking them non-stop for over a year, every since I got out of the hospital in July of last year. It is horrible, the whole situation, the Crohn's, MS, and the other, which is incredibly shameful to me.
 
This thread is so helpfull for everyone to read coz 1 day we will all be in a situation where pain meds may be needed on a regular basis .

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

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

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

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

I suppose it's my choice an I've chosen pills , that is because my life would not be worth living without them .
Jen xx
 
long time crohnie said:
Problem: vicodin(codine), percocet and oxy all have acetominophin and are bad for the liver if used for long periods so I avoided those (also they made me feel drugged and I don't like that). Told that drugs like Dilaudid a "clean" drug(no fillers) was more effective and has less side effects on the liver etc.
This must vary in different countries. In the UK, if you buy codeine over the counter - i.e. the customer chooses it, rather than being given out by a professional - the codeine is always mixed with paracetamol (acetominophin). I read that the only reason they put the paracetamol in there is to prevent people using codeine for the wrong reasons - if you take a large amount, the paracetemol will make you feel sick, so people will not be able to take large amounts and get high of the codeine. But doctors prescribe codeine without paracetamol or anything else added. With the extra control involved where the dosage is being monitored by a doctor, they must think it's safe enough to prescribe like that.

long time crohnie: sorry you've not been able to come up with a solution. It is difficult that there just doesn't seem to be a solution for pain that doesn't have negative consequences - whether unhealthy side effects or addiction. Especially when pain is chronic. I suppose I can see why the medical profession finds it hard to know what to do a lot of the time as well. I'd never heard of "narcotic bowel syndrome" before. As I wrote in my post above, I've taken a fair amount of codeine for the past year or so. It still seems to be beneficial for my bowels - the only effect is the one that's desired because I have chronic diarrhoea. The main problem I have with other non-addictive types of pain meds is they always seem to upset my stomach (in the short term). I hope you find some relief soon.
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I have the same problem with non narcotic painkillers , they all upset my stomach an cause more problems , so my only option is opiate medication .
I also have the chronic diarrhoea even when I'm really well so the added side effect of constipation is great for me ! I recently reviewed my medication with my gp , an she actually said ( we were going to change to oral morphine but I really didn't want to at the time )
" keep taking the dihydrocodeine we won't swap that as it helps with your diarrhoea
aswell doesn't it "

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

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

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

Jen xx
 
The thing with opiates is that they work so definitively.

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

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

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

Codeine consistantly makes me feel better - I know it's not coincidence or another factor - and it makes a difference that is noticable.
 
Yep i think it cones down to personal choice on the end , to take opiate medication an become dependant an have a normal quality of life with crohns and other illnesses or to take non opiate meds ie paracetamol / Tylenol etc an have a less than normal quality of life but not be dependant on opiates .

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

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

At the end of the day if you have a headache you try to fix it with tablets cold patches whatever , if you have a bad back you go to see someone who specialises in that area an take what is offered to help or fix it, so if you have crohns you see a specialist , you take the treatments offered an you try to get into remission , so if the painkillers offered are opiates an they're the thing that works for you take them an don't feel guilty about taking them , they're part of the package to get you into remmission .
Jen xx
 
Jenny06xx said:
Yep i think it cones down to personal choice on the end , to take opiate medication an become dependant an have a normal quality of life with crohns and other illnesses or to take non opiate meds ie paracetamol / Tylenol etc an have a less than normal quality of life but not be dependant on opiates .

But then every med works differently for ever individual person , an what works for sone may not work for others !
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This is so true: it's just finding if it's ok for you. If you have a tendency for addiction and taking drugs for the wrong reasons, then that's different to the inevitable physical dependency of long-tem opiate use. Physical dependecy can be problematic, but is not the same as a mental addiction or sign the drug is necessarily being abused.
 
Skinsfan1229 said:
I see you have narrowing areas I can see why you wanted want to take but so much narcotics, because it slows your bowels and can make you constipated. But I believe that most of us have diahrea and not constipation, I realize some do though.

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

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

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



other forums we've actually had a discussion of the "narcotic energy", might be a good thread to start...
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I have diarrhea with mine and I find the slowing affect of narcotics and the energy extremely helpfull and it helps with the pain. There are really only two classes of major pain med- NSAIDs and narcotics and I cannot take NSAIDs so that leaves Narcotics. Oddly enough though my body does not metabolize codein or morphine so I have to go with other things like tramadol or hydros or percs...:smile:
 
Hello Long time crohnie, has your GI doc done biopsies during a colonoscopy. It sounds like you could have Lymphocytic or microscopic colitis. The colonoscopy appears normal and you can only find it by biopsies of the tissue. There is usually no bleeding involved. There has not been as much research on it as crohns and UC and usually it is treated the same as crohns but at least you would have a DX and know what you are dealing with. It is also painful. I see you are on Wellbutrin, that helped me with my pain, it is a TNF inhibitor but does not have the side effects as a biologic. Good luck I hope you find out soon and get some relief.
 
Sherrod said:
I have diarrhea with mine and I find the slowing affect of narcotics and the energy extremely helpfull and it helps with the pain. There are really only two classes of major pain med- NSAIDs and narcotics and I cannot take NSAIDs so that leaves Narcotics. Oddly enough though my body does not metabolize codein or morphine so I have to go with other things like tramadol or hydros or percs...:smile:
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I don't think most people who have crohns can take NSAIDS? I know my GI said it was a no-no as it can cause a flare or make a flare worse.So that leaves opiates for us.I find it to be much safer to use opiates that are tylenol/ibuprofen free, especially if used for long term.

I also agree with opiates helping diarrhea.If I'm not on pain meds for a day,I might as well sleep in the bathroom and put a TV in there, because that's where I'm spending the day.After all, that is what immodium is.Originally prescribed for pain until they realized it didn't cross the BBB.
I find the energy to be helpful too, especially since crohns makes me feel so lazy all the time, but I have chronic fatigue syndrome.However after being on opiates for a long time, that energy doesn't last long, and I find myself having to take pills just to feel "normal" everyday.
I like Tramadol because it seems to last about 6 hours compared to 3 or 4 tops that the other meds last me.But I've had my experience with pretty much all of them at one time or another.
 
Re: Pain Meds, Narcotics and living with a Chronic Disease like Crohn's, below is a respectful 7-minute Video "Retort" I produced in response to CNN's & Dr. Sanjay Gupta's recent show "Deadly Dose," which revealed the growing tragic problem of narcotic/opioid prescription drug overdoses. The perspective is that of a chronic pain patient (with Crohn’s Disease) who is worried about new laws addressing this tragic problem but over-reaching in doing so, and thus, "throwing out the baby with the bath water," and making lives of many chronic patients, with Crohn's, MUCH more difficult.
https://vimeo.com/60614617
 
Dixiedoll23 said:
I don't think most people who have crohns can take NSAIDS? I know my GI said it was a no-no as it can cause a flare or make a flare worse.So that leaves opiates for us.I find it to be much safer to use opiates that are tylenol/ibuprofen free, especially if used for long term.

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

You get energy from opiates? I always feel so much more energetic after taking codiene, but when I told my GP she said that was surprising as it's supposed to be a sedative. She thought that the fatigue I feel when I've not taken any codeine was withdrawal, but after months with no opiates at all I concluded that I actually do get bursts of energy from codeine. I take regular breaks off codeine to avoid building up too much tolerance, so I can still get the energy, pain relief and anti-diarrhoea effects when I need to.
 
xrayzerase said:
i was just wondering if anyone else here has experienced getting addicted to a pain med? (like codeine)-and-if so--what do you use for pain now? (if anything)
i got addicted to tylenol 3's (tylenol w 30 mg codeine). i had been taking them for awhile then-(starting with shingles-one small nerve was in pain along eye--but-that one little nerve caused enormous pain-worse than my migraines)
then-i started using it for migraines til i got hooked. anyway-now-at times-i still get headaches. i am seeing maybe dehydration can maybe be in part what at least triggers a migraine..i don't know. but..the migraine meds scare me (as i am already on other strong meds)
the crohn's stuff -i worry if i feel pain again: well--what do others do? if in pain -and if not able to take narcotics? just deal? so far -i don't need anything for the crohn's-(though the heartburn is hard to cope with--at least the diarrhea almost gone-(still have quite a few bm's a day tho) -and some ab discomfort.
just-sometimes i wonder if the shingles/crohn's and endometriosis -and even migraines-all somehow relate (immune trouble)--(sorry-guess that is another topic)
but my key thing: it seems that if one has one crohn's-it tends to involve other stuff too (like headaches..and other messes--which= sometimes: pain) just..really wish i could take a pain pill at times (legitimately need one sometimes..)
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I also had issues with addiction to pain meds for Crohn's artheritis and lots of other health stuff so am no longer taking anything accept tylenol and am in a flare, I have leaned a very hot bath helps a lot and just doing something when I am in pain helps me not think ablut it, Good Luck to you!
 
UnXmas said:
I thought the same about NSAIDs - they make me feel a bit sick and don't do much for my pain either.

You get energy from opiates? I always feel so much more energetic after taking codiene, but when I told my GP she said that was surprising as it's supposed to be a sedative. She thought that the fatigue I feel when I've not taken any codeine was withdrawal, but after months with no opiates at all I concluded that I actually do get bursts of energy from codeine. I take regular breaks off codeine to avoid building up too much tolerance, so I can still get the energy, pain relief and anti-diarrhoea effects when I need to.
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Yeah, NSAIDS aren't very effective for me at least, they really have a tendency to tear my stomach up.
Opiates are supposed to be "downers" but I do get energy from them.However, I need to be cautious with them, since they take the pain away sometimes I find myself doing more than what I should be doing, and can therefore hurt myself more if that makes sense.
I believe codeine is a form of opiates.I like using the term opiates instead of narcotics, as narcotics can mean everything including cocaine and other drugs where as opiates are only refering to pain medication.
I'm glad the codeine seems to be helpful for you, that is one pain med that I didn't care for.It tore my stomach up,maybe that's because of the tylenol in them? I've always preffered pain meds like oxycontin that is tylenol free.
 
Dixiedoll23 said:
Yeah, NSAIDS aren't very effective for me at least, they really have a tendency to tear my stomach up.
Opiates are supposed to be "downers" but I do get energy from them.However, I need to be cautious with them, since they take the pain away sometimes I find myself doing more than what I should be doing, and can therefore hurt myself more if that makes sense.
I believe codeine is a form of opiates.I like using the term opiates instead of narcotics, as narcotics can mean everything including cocaine and other drugs where as opiates are only refering to pain medication.
I'm glad the codeine seems to be helpful for you, that is one pain med that I didn't care for.It tore my stomach up,maybe that's because of the tylenol in them? I've always preffered pain meds like oxycontin that is tylenol free.
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I get my codeine on prescription so there's no paracetamol (the UK name for the ingredient in tylenol) in it, it's just pure codeine. In this country, if you buy it over-the-counter rather than on prescription, it's always got paracetamol in. The packaging blurb makes it sound like the paracetamol is there for its own pain-relieving properties, but I've heard it's actually there to keep people from getting adicted, because if you take enough codeine to feel "high," you'll feel sick from the paracetamol, discouraging you from overdosing again.
 
Hello, I am addicted to dilaudid. I was in the hospital for two years, more on than off and recently cane home after almost 6months. I am home with sub Q dilaudid due to pain of Imuran. But before that we were weening me off from 4ml every two hours to 2.5 every 4 hours! So I'm pleased we are making some kind of progress. Of course than along comes the pain again. It's tough getting your body not to crave something its had for so long. I wouldn't wish it on anyone :(
Susan
 
Well, I was one of the people that heard dont start prescription pills cause you will get addicted and I didnt want to hear that because I was in pain and it couldnt happen to me.

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

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

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

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

I didnt put everthing in here because I could write a book,but if you are struggling and want more advice then feel free to PM me and I will be glad to help.
 
While in hospital for severe crohn's last year I was prescribed a strong pain killer called tremadole. I would take one about 10pm and it allowed me to sleep until about 2 or 3 am. Without it I was up every 15-30 min or so on the toilet Which resulted in severe cramping pains. I had the pains and BM all through out the day too but was only prescribed one pill per day so I would prefer to take it when I wanted to try and sleep. Even then, the nurses would try to talk me into taking just a panadol. I guess I felt kind of addicted but I was like a fear of what its like to not take it and struggle through the night. I was in there around 2 months and was still having terrible cramping and BM for about two weeks after being released. So far, they have been the worst two and a half months of my life, But its early days yet.. :lol:
 
TheyCallMeRC said:
Well, I was one of the people that heard dont start prescription pills cause you will get addicted and I didnt want to hear that because I was in pain and it couldnt happen to me.

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

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

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

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

I didnt put everthing in here because I could write a book,but if you are struggling and want more advice then feel free to PM me and I will be glad to help.
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Excellent advice and very true! Nothing will take away all the pain. I'm been off of opiates for 1 1/2 yrs. was on mass doses for years as well. That was the hardest thing! Our bodies get so addicted. Now i go to the er when the pain gets unbearable. Just found out i have inflammation throughout my colon from a CT i received last night from an ER visit. I've been in remission for years so quite surprised and pray no surgery. I dont want to get back on all those opiates again!
 
Regarding addiction: You can be psychologically and physically addicted. No matter who you are or what your pain is, if you are on long term opiate medication, which includes codeine, your body is physically addicted and does make the pain worse due to with drawl and increased tolerance. It sucks, but its the truth. If you are seeking a high, or using it to make you feel not so depressed, or going to different drs to get the medication, then you are psychologically addicted and most likely physically as well. This is one of the side effects of our disease. We do have valid pain and will need some relief at times, sometimes long periods of time. But do have an aware doc that is strong enough to wean you off if you appear to be ok medically. Its a vicious cycle but sometimes unavoidable...
 
long time crohnie said:
Regarding addiction: You can be psychologically and physically addicted. No matter who you are or what your pain is, if you are on long term opiate medication, which includes codeine, your body is physically addicted and does make the pain worse due to with drawl and increased tolerance. It sucks, but its the truth. If you are seeking a high, or using it to make you feel not so depressed, or going to different drs to get the medication, then you are psychologically addicted and most likely physically as well. This is one of the side effects of our disease. We do have valid pain and will need some relief at times, sometimes long periods of time. But do have an aware doc that is strong enough to wean you off if you appear to be ok medically. Its a vicious cycle but sometimes unavoidable...
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Very true. It took me a while to understand that although I wasn't psychologically addicted, I was physically addicted/tolerant. Without the psychological addiction, it was possible to stop them - I had the will power (or whatever you'd call it) to make myself stop taking them, but physically my body wasn't happy about it!
 
Earlier study, published in European Journal of Pharmacology said resveratrol improves IBD symptoms too.
 
Well, during my hospital stay following surgery a couple of weeks ago, I got a rapid detox from codeine. I couldn't have any opiates as they didn't want risk slowing my digestive system down. I was feeling so incredibly sick anyway that I couldn't say whether I actually went into withdrawal or not. But anyway, now I'm off codeine completely, and plan to stay that way for a while. I will use it again when things get bad, but I'm going to make the most of being off of it for a while. :)
 
Wow UnXmas that had to be tough! Recovering from surgery and detoxing as well? Sounds kinda irresponsible on their end to go thru that at the same time. Hope they gave you something to ease the process. Happy to hear you're off of them tho and pray the results of your surgery are positive! The one big benefit of opiates, for me anyways, is it is the only thing that stops my chronic D! Trying to stay off all of them too! Good luck!!
 
long time crohnie said:
Wow UnXmas that had to be tough! Recovering from surgery and detoxing as well? Sounds kinda irresponsible on their end to go thru that at the same time. Hope they gave you something to ease the process. Happy to hear you're off of them tho and pray the results of your surgery are positive! The one big benefit of opiates, for me anyways, is it is the only thing that stops my chronic D! Trying to stay off all of them too! Good luck!!
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They didn't really have a choice - my digestive system became temporarily paralysed as an unexpected complication of the surgery, so they couldn't risk anything that would slow it down further and took me off codeine and significantly lowered my dose of Amitriptyline, which is also constipating. I was more upset by the Amitriptyline reduction as it also causes withdrawal and in particular insomnia - I had awful awful nights in the hospital, though I'm not sure whether that was just the Ami withdrawal, as I always sleep badly after surgery. I'm back on my usual Ami dose now and sleeping very well again. I've no idea how sick withdrawing from codeine actually made me or how much of the sickness was from the surgery and the intestinal paralysis.

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

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

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

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

Anyway, I am happy to hear you are on the mend and no longer in such pain. Addictive or not, sometimes we need relief. This disease sucks!!
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It wasn't my regular doctor who gave me the anti-anxiety medication; my surgeon, who is brilliant and has known me for years, got sick the day after he operated on me, so the doctors who ended up treating me during the recovery were not specialists, they were just the doctors who happened to be on-call on the surgical recovery wards.

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

Are you able to get off the prednisone now? I remember the side effects righted themselves pretty fast once I was off it.
 
Im still weaning off of the prednisone, now at 20mgs. Doc has me on 50mg of amitriptyline, 100mgs Imuran, and now trying levsin (hysocalimine) for bowel spasm and chronic D. If that, the levsin, doesn't work other options are donnatol (belladonna) or codine sulfate. Sx doing well at the moment. But Im constantly tired. Hopeful to be done w prednisone by the holidays. Then I can really see where I am at. Hope all is well w you all. I wouldn't have gotten thru all this without this forum :)
 
every time I tell a doctor Im in pain they look at me like im lying. wtf? I got a chronic disease with no cure but no one believes me when I say im in pain.
 
Amaze said:
No Doctor will prescribe me pain meds no matter how much pain im in
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What type of pain do you have? Have you ever been prescribed pain meds in the past? Have you tried any over the counter brands?

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

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

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

If the cause is not fixable and the pain is chronic, have you asked for non-addictive painkillers, ones you can't build up a tolerance to? Have you tried methods of pain relief besides medication? Sometimes simple things can be surprisingly effective. A hot water bottle for stomach cramps, for example, relaxes the muscles and can really ease that type of pain.
 
Amaze said:
every time I tell a doctor Im in pain they look at me like im lying. wtf? I got a chronic disease with no cure but no one believes me when I say im in pain.
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Find a pain management clinic/doctor. What is causing your chronic pain? I would address the cause. I was addicted to pain meds and now use cannabis and aspirin (rarely). My friend had hand Surgury with pins no anasthesia only cannabis and ibuprofen. He too was addicted to pain meds. Be very carefull.
 
Unfortunately JohnnyO, most states still consider cannabis as illegal and therefore hard to obtain.

Amaze, I truly feel for u and your pain. The medical profession is to blame. They over prescribed pain meds (opiates) and created a big addiction mess. There is not a time that I don't feel like a drug seeker when I go to the ER to get some pain relief. I go to the ER after Iv'e had several days of unbearable pain so I don't keep opiates at home. I tend to take them when I get any pain and my body will become addicted and that sucks! I have not had any active crohns in years but still have bouts of pain and they dont know why. It's true that you need to watch taking opiates, and avoid any pain clinics that dont provide a full program ie: physical therapy, relaxation methods, bio-feedback, massage. They should also have a pain psychologist on staff too. You don't want a clinic that just hands out pills, they are the worst!! See if your GI or primary care doc can recommend a clinic for you. Hope you find some type of relief.
 
Yeah but the person I was responding to lives in NY. NJ has medical cannabis, and I never had a problem finding it when it was illegal. Opiates aren't worth it. If my friend had pins out in his hand with just ibuprofen and cannabis than imagine the possibilities. Opiates are for short term use or for terminally ill IMO. If you want to know true pain it is opiate addiction.
 
Doctors always tell me "I wont prescribe you pain meds because I don't feel comfortable doing so" or "it wont help anyways, it'll just mask the situation"

I have the worst doctors/GI around. As a patient I feel neglected and not cared for. When ever I have an issue no one ever has an answer, reason, or a solution to things.

As for the marijuana.... I can not smoke marijuana. It is illegal here in NY. I do understand NJ has medical cannabis but I have a job that gives out drug tests once in a while and even with medical card I'll still get fired.
 
long time crohnie said:
The medical profession is to blame. They over prescribed pain meds (opiates) and created a big addiction mess.
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I'm usually the last person to defend the medical profession, but I do think they can't win on this one. If they prescribe opiates, they get blamed for creating addictions; if they withhold them, they get blamed for not treating patients' pain. Ideally they'd be able to assess each patient individually, take into account the type of pain, the length of time medication will be needed for, the patient's tendencies towards addictive behaviour, and prescribe correctly for each patient - but in reality that's incredibly difficult to do. Sometimes they're going to make mistakes. Though of course there are doctors who are far to liberal in handing out opiates inappropriately without considering other options and creating addictions - I just don't think this is always the case.

When I was in hospital in pain and couldn't have opiates because their effect on the digestive system made it unsafe, the doctors were really stuck. Nothing beats opiates when it comes to pain relief (in most cases). I think it can be the same when doctors are faced with dealing with chronic pain; non-opiate options often don't work, and they're faced with leaving the patient in pain or with potentially creating an addiction (which wouldn't necessarily take care of the pain either, as the patient may become tolerant to opiate medication).

the pain I suffer can be tremendous. I have Crohns Disease, hemorrhoids, ulcers, and fissures. A cocktail of pain
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What other forms of treatment are you getting? Have you ever considered treating your haemorrhoids with surgery? I've had surgery to remove haemorrhoids - it's usually only used in extreme cases, but it can work very well. What treatments have been tried to treat your fissures? If possible, maybe you could consult a colorectal surgeon?
 
Have anyone consider switching to medical marijuana as a replacement for pain mangement. I know I'm addicted to pain killers the norco 10/325 one. I'm am really tired of ytaking pills and I just found out that medical herbs has help me more then the pain killers.
 
I must admit that reading many of these comments I feel frustrated. I too have found myself in the situation of inadequate pain relief. I have had ALL treatment approaches , with the exception of medical cannaboids, yet nothing works.

It is interesting to note that traditionally vets get significantly more training in pain management than doctors. Furthermore, drug companies have been found by the courts of having provided false data pertaining to newer opiate medications to doctors. This tallied with inadequate training, legal and personal ethical stances makes the practice of pain management chaotic.

What is really needed is proper development of pain management services and medications. Given, the commonality of the issue across various disease types there should be enough people to make an effective pressure group. If we look at how effectively our friends who faced with HIV in the 80 ' marshaled the medical and political establishments to find newer and more effective treatments we should be inspired to do the same for pain. The situation with respect to HIV is such that people can approximate normal life expectancy, mothers can avoid passing it to their children at birth, PEP can significantly reduce the risk of acquisition after exposure, the disease mechanism is very well understood, and many treatment approaches are being developed.

I think it would help a lot if we were to learn the lessons from the HIV/Aids lobby groups and apply their techniques to pain management development. The least we should demand is that all doctors are given detailed training in pain management, and that treatment should be considered a failure if pain control has not been achieved.

As an aside, when analgesics and anesthetics were initially developed many in the medical profession considered them inappropriate because it was only proper that the patient endure the pain! What is amazing is that their are still some who believe this - I have actually met a doctor who believes it! Fortunately, he wasn't mine - though given some doctors I've had you'd be forgiven for believing that of them:)

Under old Irish Law, should a treatment fail, the medic was required to return all fees and take on the cost and responsibility of all future treatments. I like that idea, but I'll settle for their active pursuit of better and effective treatments and processes.
 
Hello Every one .
I need advice.. I am suffering by back-pain. But I don't take drug's. Please let me know without drug's how to reduce my pain..
 
SMSIRL said:
I must admit that reading many of these comments I feel frustrated. I too have found myself in the situation of inadequate pain relief. I have had ALL treatment approaches , with the exception of medical cannaboids, yet nothing works.

It is interesting to note that traditionally vets get significantly more training in pain management than doctors. Furthermore, drug companies have been found by the courts of having provided false data pertaining to newer opiate medications to doctors. This tallied with inadequate training, legal and personal ethical stances makes the practice of pain management chaotic.

What is really needed is proper development of pain management services and medications. Given, the commonality of the issue across various disease types there should be enough people to make an effective pressure group. If we look at how effectively our friends who faced with HIV in the 80 ' marshaled the medical and political establishments to find newer and more effective treatments we should be inspired to do the same for pain. The situation with respect to HIV is such that people can approximate normal life expectancy, mothers can avoid passing it to their children at birth, PEP can significantly reduce the risk of acquisition after exposure, the disease mechanism is very well understood, and many treatment approaches are being developed.

I think it would help a lot if we were to learn the lessons from the HIV/Aids lobby groups and apply their techniques to pain management development. The least we should demand is that all doctors are given detailed training in pain management, and that treatment should be considered a failure if pain control has not been achieved.

As an aside, when analgesics and anesthetics were initially developed many in the medical profession considered them inappropriate because it was only proper that the patient endure the pain! What is amazing is that their are still some who believe this - I have actually met a doctor who believes it! Fortunately, he wasn't mine - though given some doctors I've had you'd be forgiven for believing that of them:)

Under old Irish Law, should a treatment fail, the medic was required to return all fees and take on the cost and responsibility of all future treatments. I like that idea, but I'll settle for their active pursuit of better and effective treatments and processes.
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Cannabis and Aspirin combo FTW!
 
So I made the switch to medical herb, since I live in California I got the card. So far everything seem to be much better since I'm tapering off the norcos and using herbs more often for pain instead of the pain killers. I strongly recommend people take this step for pain relief because its instant relief instead of waiting for the pills to " kick in ".
 
So I came off codeine following my surgery last October, because I suffered post-surgical ileus and the doctors wouldn't risk the codeine slowing down my already completely paralysed digestive-system. So I did a horrible cold-turkey detox. Now my ileostomy is suddenly extremely watery so I've been prescribed codeine again, along with loperamide, this time for the purpose of slowing things down. But yes, I'm looking forward to the other effects of codeine kicking in again now that my tolerance has probably gone down a bit. For me this means energy - yes, I know codeine is supposed to be a sedative, but it gives me energy (and I know some others on this forum also experience this effect). It means I can walk around without aching terribly, and that I can focus on a book or on the Internet without feeling it a huge effort and that all my energy has drained away.

Even when completely detoxed I haven't felt as good off it as I ever felt on it - i.e. it's not just withdrawal symptoms that make me feel worse - codeine has genuine positive effects for me as well. Plus maybe now my stoma bag will stop filling up so often. :p
 
CrohnDad said:
Anyone hear of Kratom?
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I know very little about it, but I heard of it on a documentary on "legal highs". Although this may have been a biased documentary, I was convinced by it that using legal highs is generally not a good idea - being legal doesn't mean it's safe, and substances within this category often have not been well researched - meaning their effects on the body are not well understood - and are often unregulated making it difficult to know that you are obtaining the substance you are led to believe it is. (Also I'm not sure whether in some countries it might not be legal anyway.)

I do believe that drugs which pose problems when they are used recreationally can still have a place as treatments for pain or other symptoms, and that criticising or banning substances outright rather than allowing them to be used in certain circumstances - e.g. prescribed by doctors to patients in pain - is unhelpful and often leads to people missing out on potential treatments. However, as things are at the moment, I'd be wary of trying kratom as it doesn't appear to have been studied enough to be able to determine its safety.
 
So I'm back on codeine and functioning so much better on it or off! In my case, the benefits are worth the difficulties of being addicted. It's not slowing my stoma output down any though.
 
Hi All :ghug:

So I'm off all my pain meds except tramadol now( as of July '13).I'm on the max 8 a day on the tram but I came down from 120 mg of oxycontin.I'd still like to try to get down to around 4ish, but I definately notice an extreme lack of energy and have focus issues just trying to cut down slightly.

I do have an apt at the pain clinic in a couple of weeks, but I think I'm going to ask for vicodin this time instead of oxy.I've noticed I don't have a tendency to go "overboard" with those like I can with other pain meds.Probably bc of the tylenol that's in them.
All I know is it's a constant battle.I get so sick of dealing with pain meds, the hassle of it all makes me not want to deal with them, but at the same time I really feel like I need them especially since my medications have all failed now and pain meds have been the only thing that slows the D down for me.They never constipate me but they do help cut bathroom time in half.
 
Update: I'm still taking codeine daily again, but I think my tolerance reduced quite a bit during my break from it, as I'm getting quite a good beneficial result from taking less than half the recommended maximum dosage each day. I'm going to try and keep to this dose, and save taking the maximum dose for days when I really need it.
 
UnXmas said:
Update: I'm still taking codeine daily again, but I think my tolerance reduced quite a bit during my break from it, as I'm getting quite a good beneficial result from taking less than half the recommended maximum dosage each day. I'm going to try and keep to this dose, and save taking the maximum dose for days when I really need it.
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I completely understand your situation. I was on Tramadol for just over a year and felt like it was becoming addictive so I stopped. It wasn't the best, but I adjusted to it. I recently had to go back on it because of the pain. I'm taking 2-3 doses a day instead of the 4-5 I was on before. It definitely feels more potent and I'm not sure how I was really functioning with the higher amounts in my system. Granted it's not codeine, but it is effective.
 
just looking at how many people take pain meds for crohns shocks me- I am one also that is on pain meds- hydro 7.5 325 mg. I use to be on 4 a day and doc dropped me to 2 day and now has me on oxycotin ER. any extended release tabs I find do not help crohns pain and yet my pain med doc keeps making me try them. why not continue giving me what was working??? Any suggestions. oh and I laugh because my sis just got a new gi doc and they told her they do not treat crohns with pain med haha. so she also just got into a pain management doc and they told her Tylenol or gabapentin. they will also not use narcotics, well for gods sake what do they want us to stay in bed curled up in pain everyday... docs make me laugh...
 
thaler: Your doc may want you to take oxycontin due to it not having acetamenophen in it like the hydro does and may want to lower how much you have in your system. A lot of the meds we take, over time, may hurt the liver. The problems I always had w extended release pain meds is they flew right thru me and never broke down! I have Crohn's too, and I literally had to fish the pills out of the toilet to show him I poop them right out! I can't take any type of ER medications. Unfortunately, pain can be a big part of many of our lives from time to time, and due to the constant pressure docs are under to control the amount of narcotics they prescribe, many don't want to prescribe them anymore ie: GI docs. Mine won't. Had to go thru a pain management clinic or my primary doc, who are also under extreme scrutiny for the amount of drugs they prescribe. Its a big horrible mess, for ALL those involved w treating chronic pain. I finally got off pain meds after years of being on them. I still have pain, but can use them sparingly now that my body no longer craves them. A wicked cycle for a wicked disease. Good luck to you and your sis!!
P.S. Wish my state had medical MJ, that would help a lot and not physically addicting!
 
I'm glad your able to stop all pain meds long time crohnie. It was tough cause I also cold turkey on pain pills norco 10/325 strengths. What I end up doing is using medical marijuana for my pain management replacement. So far it has help and been super effective. With all this new advancement with medical cannabis, you don't even need to smoke to get medicated.
 
long time crohnie: as for the er tablets they do not go right through me, I currently have a ileostomy. they don't seem to work at low doses and when you up some of these meds to high doses they me extremely tired, I mean add in the depression, low vitamin levels etc. etc. its hard enough to balance day to day but then give me a med that is making me tired does not work for me at all. I am a mother of 2 youoys, I need something that will work fast and notware me out :) my problem is when it comes to pain is I am having a flare up with the bag so I also have stool coming out of the rectum when I am not suppose to be. sicker than ever some days, I don't feel i should have to find a sitter and take my self to the hosp. to get iv pain med, such a hassel. and its so long and drawn out when you go there, your looking at 4 hours :( I was told they just legalized med. mar. in my state but doc has never mentioned it :( the sad part is I have been on those hydo's for 8 years why mess with my meds now .....
 
thaler2778 said:
long time crohnie: as for the er tablets they do not go right through me, I currently have a ileostomy. they don't seem to work at low doses and when you up some of these meds to high doses they me extremely tired, I mean add in the depression, low vitamin levels etc. etc. its hard enough to balance day to day but then give me a med that is making me tired does not work for me at all. I am a mother of 2 youoys, I need something that will work fast and notware me out :) my problem is when it comes to pain is I am having a flare up with the bag so I also have stool coming out of the rectum when I am not suppose to be. sicker than ever some days, I don't feel i should have to find a sitter and take my self to the hosp. to get iv pain med, such a hassel. and its so long and drawn out when you go there, your looking at 4 hours :( I was told they just legalized med. mar. in my state but doc has never mentioned it :( the sad part is I have been on those hydo's for 8 years why mess with my meds now .....
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How about hydromorphone? Dilaudid? It is straight narcotics and did better and not so "intoxicating" and work faster but not as long. and it doesn't have tylenol in it. I'd ask about med MJ. My GI docs have always been pro MJ, and admit to having patients who use it but cannot prescribe due to illegal here. Hope things get better!!
 
I would second Dilaudid, that's what I request if I'm in major pain. It's what they gave me for the first 48 hours post-op. They have since transitioned me to Percocet 5/325 which wears off after about 3-3.5 hours.

Docs are still wary about using medical marijuana because it's still pretty new as an acceptable treatment option and because of the laws surrounding it. I would be open to it but it's not yet legalized here in NC if I remember correctly.
 
Pain Med Advice

​
HI all-
So, I have been in a lot of pain lately due to a bad Crohns flare. I see a Pain Specialist and get 100mg cultural twice a day and doxycycline 40mg every 8 hrs. I have a huge tolerance to almost everything ans I am starting to feel that this regimen isn't working. I also have no large intestine (I have a J-Pouch) and have had pills pass right through me. I also have chronic diarrhoea; (I go 5-10x/day) so codeine is great for slowing the motility of my bowels. But, I had a liver transplant at age 13, so I don't want to take Tylenol on a regular basis.
Who all is on Oxycontin, what dose, and does it help? I have been thinking it would be good to try since I have never been on it and shouldn't have a tolerance.
 
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Crohnnie said:
​
HI all-
So, I have been in a lot of pain lately due to a bad Crohns flare. I see a Pain Specialist and get 100mg cultural twice a day and doxycycline 40mg every 8 hrs. I have a huge tolerance to almost everything ans I am starting to feel that this regimen isn't working. I also have no large intestine (I have a J-Pouch) and have had pills pass right through me. I also have chronic diarrhoea; (I go 5-10x/day) so codeine is great for slowing the motility of my bowels. But, I had a liver transplant at age 13, so I don't want to take Tylenol on a regular basis.
Who all is on Oxycontin, what dose, and does it help? I have been thinking it would be good to try since I have never been on it and shouldn't have a tolerance.
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Hi Crohnie! RE oxycontin, you mentioned that pills pass right thru u, than oxycontin not a good med. It has a coating for extended release, I pooped them right out and I have a colon. You may want to consider a transdermal fentanyl patch. It absorbs thru the skin and provides long term relief. There are also liquid forms of pain medications that contain no additives that would hurt your liver. Dilaudid is another option for short term pain that also does not contain tylenol. There are options out there, dilaudid helped me w my chronic diarrhea. Hope this helped some.
 
I am in pain everyday and I have terrible anxiety. No doctor will prescribe pain meds nor anxiety meds. I have gone to countless doctors and psychiatrists and no one wants to help. They want me to suffer.
 
Amaze, I feel for you! Like Ive said in earlier posts, that more and more docs are pulling away from using narcotics due to over proscribing in the past. If he won't help, go to your primary physician and explain whats going on. That doc may help or refer you to individuals who can. It is a well known fact that those who deal with a chronic illness are much more prone to clinical depression and anxiety. A good psychiatrist along with a therapist who specializes in those with chronic pain may be of help for you. I am confused as to why he has you on Naltrexone? Had you had opiate addictions in the past? Hope to hear from you soon.
 
I am wondering if anyone in ct area can suggest someone who does deal with pain appropriately. My current dr told me he just thinks i like pain meds (while I was in the hospital) and suggested I go into pain management but then said he does not do referrals for pain management?!?! He also is constantly putting me on prednisone (up to 80mg) and then yelled at me for blowing up. Im to the point where i jsut want to cry in bed every day from the pain and the stress. Any help would be greatly appreciated
 
I didn't see where anyone complained of joint pain with the Crohn's. My GI doc sent me to see a rheumatologist who diagnosed me with Crohn's arthritis and fibromyalgia. Alot of the drugs used for the Crohn's arthritis pain helps the crohn's symptoms. I do take hydrocodone and dilaudid for severe pain and it helps. What has also helped is Neurontin. I take Elavil at bedtime since I had problems with pain waking me at night. It is still a challenge day to day (my hands have weakened and are painful) and I can't do nearly what I used to. The arthritis has really kicked me hard. Now I have been recently diagnosed with PSC so that complicates all more. I have not had any problems with addiction but I have found I am allergic to most of the TNF drugs or can't take them because they have a latex contamination (I am anaphylactic to Latex). I have been in liver failure once and had serum sickness from these drugs but I am excited for those folks that can take them. I am currently on Methotraxate and steroids for the Crohn's and the PSC but monitored closely. Hope this helps.
 
UnXmas said:
So I came off codeine following my surgery last October, because I suffered post-surgical ileus and the doctors wouldn't risk the codeine slowing down my already completely paralysed digestive-system. So I did a horrible cold-turkey detox. Now my ileostomy is suddenly extremely watery so I've been prescribed codeine again, along with loperamide, this time for the purpose of slowing things down. But yes, I'm looking forward to the other effects of codeine kicking in again now that my tolerance has probably gone down a bit. For me this means energy - yes, I know codeine is supposed to be a sedative, but it gives me energy (and I know some others on this forum also experience this effect). It means I can walk around without aching terribly, and that I can focus on a book or on the Internet without feeling it a huge effort and that all my energy has drained away.

Even when completely detoxed I haven't felt as good off it as I ever felt on it - i.e. it's not just withdrawal symptoms that make me feel worse - codeine has genuine positive effects for me as well. Plus maybe now my stoma bag will stop filling up so often. :p
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Vic's have the same effect for me, i.e. I regain energy and feel somewhat normal, also I don't get addicted at all. Its supposed to be tougher for people that are actually in pain to get addicted, as we are taking those substances to negate negative effects and pain we experience, where the person looking for a high is looking for a glow to go with their already good health.

I'd take being healthy and feeling healthy again over a high any day myself. One thing I do tend to worry about with the meds is that I know the "healthy" feeling they add is false and overdoing it by doing stuff I suddenly feel I am able to, but I know that no way in hell I would feel up to without them, like a false glow.

I also don't get why they are the only pain med that is at all effective with me so far, I've been on many, including Tramadol which is supposedly quite effective, but did nadda for me, and I gobbled them like M&M's trying to get relief, they just didn't work at all. I really think that because I am hyper most meds just do not work on me, no other explanation.
 
juggys69 said:
I also don't get why they are the only pain med that is at all effective with me so far, I've been on many, including Tramadol which is supposedly quite effective, but did nadda for me, and I gobbled them like M&M's trying to get relief, they just didn't work at all. I really think that because I am hyper most meds just do not work on me, no other explanation.
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See, from what I've heard from others is tramadols haven't done anything for them either.I've been on trams for many years now.Not because they are a great help with pain, but because they were much easier to get from doctors, and I felt somewhat normal on them.(ie no high feeling)
Since trams were just recently classified as a narcotic now, they probably won't be as easy to get.I'm actually glad they did that.Tramadols are just as addictive as any other pain med and doctors didn't believe me if I told them I was going through withdraw if I didn't have any.Plus since they have serotonin in them, you get a double whammy.Withdraw from the serotonin as well. :/
 
goofyrn2 said:
I didn't see where anyone complained of joint pain with the Crohn's. My GI doc sent me to see a rheumatologist who diagnosed me with Crohn's arthritis and fibromyalgia. Alot of the drugs used for the Crohn's arthritis pain helps the crohn's symptoms. I do take hydrocodone and dilaudid for severe pain and it helps. What has also helped is Neurontin. I take Elavil at bedtime since I had problems with pain waking me at night. It is still a challenge day to day (my hands have weakened and are painful) and I can't do nearly what I used to. The arthritis has really kicked me hard. Now I have been recently diagnosed with PSC so that complicates all more. I have not had any problems with addiction but I have found I am allergic to most of the TNF drugs or can't take them because they have a latex contamination (I am anaphylactic to Latex). I have been in liver failure once and had serum sickness from these drugs but I am excited for those folks that can take them. I am currently on Methotraxate and steroids for the Crohn's and the PSC but monitored closely. Hope this helps.
Click to expand...

Me.Me. and me! I feel like a 90 yo my arthritis is so bad.I'm usually just curled up in a big ball most of the time. :(
 
Dixiedoll23 said:
See, from what I've heard from others is tramadols haven't done anything for them either.I've been on trams for many years now.Not because they are a great help with pain, but because they were much easier to get from doctors, and I felt somewhat normal on them.(ie no high feeling)
Since trams were just recently classified as a narcotic now, they probably won't be as easy to get.I'm actually glad they did that.Tramadols are just as addictive as any other pain med and doctors didn't believe me if I told them I was going through withdraw if I didn't have any.Plus since they have serotonin in them, you get a double whammy.Withdraw from the serotonin as well. :/
Click to expand...

I noticed what you said with the Oxy and the Vic's, isn't it funny how the supposedly constipate the hell out of normal people and when the doctors ask you about it its like you grew two horns when you tell them, no, if anything they help regulate me ? :D

Also saw what you said about having a pain clinic appointment soon, the first thing they will do is epidermal's, or if its a weird new on electric treatment, if and only if they don't work they will consider other options. I honestly don't care, I just want something that works, it just offends the hell out of me knowing there is something that does work and they diddle and waste months to years of my time deciding to go back to that. I'm the one in pain, no skin off their backs but they are frigging supposed to be trying to help me, not treating me as a lab rat, I mean how long does it really take to decide something doesn't work ? Some things they want you on for weeks, its like come on, don't you think I know after a day, never mind that one hour if they freaking work ? Oh its all ok, yeah because you're not the one in constant pain asshat ! If I could have a super power, I would choose to be able to transfer my pain to each one of those dicks, I bet you they'd come up with a pain relief med that worked for themselves in a day to a week as opposed to weeks to a year and then switching you just because some damn laws changed because some twit doctors were subscribing to people they shouldn't have been in the first place.
 
I had a horrible experience with pain med addiction recently. I had emergency surgery and a new stoma (my third in under a year) due to a blocked intestine which perforated. I have very little memory of the days before and after the surgery, but I do remember being in intensive care and not being particularly uncomfortable. Later I was moved to another ward, and I had oxycodone through an IV in my arm, and a button to press when I wanted it. A pain specialist nurse came to see me, and she said I should push the button as often as I wanted; she said don't wait until you get pain, push the button at any discomfort, before it develops into pain. So I did. A couple of days of this, a different pain specialist nurse came to see me, and he said they should take the button away now. Since I didn't seem to have much pain, just a bit when I moved, I said fine.

Later that day, I wasn’t in much pain, but I was so uncomfortable, I couldn’t keep still, couldn’t sleep, and the restlessness was just unbearable. I know that sounds strange to say – that restlessness is unbearable, it sounds like something much more minor, but it really was terrible. Each minute dragged by like an hour. I begged them for the button back, and they gave it to me. And I felt so much better – I felt right again.

But the next day, they took it away again, saying I had to come off it some time. I wanted to cut down gradually, but they said no. Later in the day –same thing – I couldn’t stand it, and all I wanted was the button back. They called the pain specialist back again – the second one, not the woman who’d told me to use it as much as I liked. I told him I needed the button back, but when he asked me if I was in pain, I had to be honest and say no. He said if I wasn’t in pain, no painkillers. I told him I was addicted to the oxycodone, and that it was the withdrawal I couldn’t stand, but he was very uncaring and just told me I’d not been on it long enough to get withdrawal. The following night was awful, of the whole of that emergency admission, it was the hardest to get through, it felt like an eternity. If I’d known some way to get the oxycodone myself, I would have done it, and I think I drove the nurses up the wall asking them to give me something that would help.

Luckily the withdrawal did end. When I saw the pain specialist again, I told him that no matter what he said about my not being on it long enough to be addicted, I knew that I had been addicted. He really didn’t seem at all interested in what I had to say though.

I spoke to doctors about it though, and they said that the only thing with worse withdrawal than oxycodone was heroin. My codeine addiction was nothing to them – they were quite happy, once I was off the oxycodone to give me plenty of codeine and oral morphine. (When I was off everything, I realised I did actually have quite a bit of pain, but the morphine and codeine kept it under control. They gave me paracetamol too, though I’ve never noticed that actually having any effect on pain.) Because this surgery was an emergency, I didn’t discuss pain relief beforehand – by the time I was with it enough to know what was going on, I think I’d already been having IV oxycodone along with some other things for a couple of days. But if I ever do need surgery again, I honestly think I’d rather the pain than the withdrawal from painkillers. I’ve had many surgeries before and had no pain relief after them – my surgeon didn’t want to risk any opiates as they slow down bowel function; they did give me paracetamol, but as I said, I don’t count that as pain relief. The withdrawal was definitely worse.
 
Why did I think it was a good idea to finish all my codeine over the weekend when I knew I won't be getting any more for a few days? :confused2:
 
Didn't manage it. :( I think I could have if I wanted to, but I didn't want to. I wanted to take my dog for a walk because I love the grey miserable English weather (seriously! I love Autumn and Winter - just wish it was colder!) and I was all achy and had no energy. I took some codeine and felt well enough to go out and not just force myself to, but actually wanted to and enjoyed it.

Edit: Trying again today.
 
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Yesterday was better! I've taken some today, but less than usual - enough to prevent withdrawal.
 
No codeine at all today. :) Might take some later when withdrawal symptoms start. Yesterday that's all I took too - none until early evening, then moderate dose to stop withdrawal. I'm using Modafinil as a kind of substitute: http://www.crohnsforum.com/showthread.php?t=67990

I'm also very aware that I've gone through a lot of my codeine prescription that's supposed to last me a couple more weeks yet. Last prescription I ran out too early and don't want to repeat that. But why did I wait 'til now to try and moderate it?! :confused2: Why was I too stupid to do that from the start? It's the same with my weight - I know my doctors will hospitalise me if I don't gain enough weight each week, but I spent a while faffing around before I actually realised I have to force myself to eat more. I guess I always want to see what I can get away with.
 
Keep up the good work UnXmas. Hang in there. It's a hard road but I'm sure with time you will get there. Thanks for the link about Modafinil.
 

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