Long term usage of opiates

I am a crohns patient of longstanding ('91). The usual antidiarrhea meds are ineffective. Only Morphine Sulfate IR 30mg QID controls both abdominal pain and diarrhea. Tincture of opium also is of some benefit. What are the long term consequences of this? There has been no increase of usage in the past year. I am also on Humira. And I have not been hospitalized in over a year: a record. For over ten years I had had 25 admissions and have had four small bowel resections. I have actually been able to gain and hold weight. Things seem good. Should I be concerned, worried, or simply go with it. My gastroenterologist seems reluctant about prescribing the MS. Any advice, suggestions, comments would be appreciated. Note: these drugs do not turn me into a drooling wreck. I take grad level philosophy classes and if you can read Hegel then you are quite functional, I think.
Thanks, Gerald Herrin

Hi geraldherrin, sorry for the late reply. How long have you been taking Humira? Did you start it before or after you started treating the pain and diarrhea with opiates? The only down side I can think of other than severe constipation and dependency (you'll have to taper off of it once you decide to come off it as you will have withdrawals if you stop cold turkey) is its masking symptoms. Its important to know how you're really feeling yet its also good to keep having regular testing done. So with pain, anti diarrhea and anti nausea meds I get concerned that people go to those rather than checking in with their doctor to find the exact cause and treat the underlying issue. I'm fine with helping minimize symptoms as needed but its important to treat the underlying issue so you don't have more problems (another resection) later on. This is why I asked how long you've been on Humira because if you've been on it for a while then you shouldn't still be dealing with constant pain and diarrhea to the point where only opiates help.

Keep us posted on how you're doing.

Edit: Do you know if you have or are close to having Short Bowel Syndrome because you've had so many resections already? If you do have it then likely the diarrhea wont stop its the pain I'm concerned about.

I have been on Humira for about a year. I know that I have strictures and probably adhesions. My doctor will not allow me to take more than three MSIR in a 24 hour period. Quality of life declines with increased diarrhea and I always have some pain with any eating of any kind. Usually mild. Occasionally worse. But no signs of blockage and, believe me, constipation is NOT a problem. Short Bowel Syndrome is a potential problem if I undergo yet another surgery. I pray that does not happen.

I probably should add that I am well aware that opiates can mask symptoms. But MS is the single, most effective drug to reduce diarrhea and abdominal pain that I have available to me. With lower dosages, there is less response. I do not like incontinence. I do not like tethered to a bathroom. The past year, I was not hospitalized, gained weight, less pain, general improvement. Now, to go back to TID doses, I face greater discomfort. For the first time in ten years, I was not hospitalized. That is why I am feeling demoralized with reduced meds. I know what obstruction feels like. By experience. But I prefer feeling better, even if it takes QID doses of MSIR 30mg to do it. To me, the risk and benefit seem obvious. I would change gastroenterologists if I could. This week I intend to discuss this with my PCP. Wish me luck as I pray that all with crohns do well and escape this dreadful disease. Thanks for listening.

I think if it works for you, you shouldn't worry too much about taking it, as long as you're careful. I take codeine on a long-term basis, which I guess is similar to what you're asking about, just on a smaller scale. I don't know all that much about morphine as the only times I've taken it have been for very short periods in hospital following surgery, but I believe the side effects for different opiates are similar, so hopefully the problems I’ve found out about for my use of codeine will apply to the morphine you’re taking.

The biggest potential problems for are addiction and tolerance. I don't believe I'm psychologically addicted to codeine as once every few months or so I taper myself off it and spend a week off it to reassure myself that I can do it. I once went “cold turkey”, which I was able to do, though I did feel quite flu-like and was unusually upset and tearful for a few days. I am more tolerant than when I first started taking it – the first time it gave me a minor “high” feeling, which I’ve never experienced since. The pain relief is the same for me even after taking it for over a year, however, so I don’t have to keep increasing the dose.

There are other risks and side effects as you know – e.g. nausea, drowsiness, constipation – that could also pose a problem for someone taking opiates, especially drowsiness as it can mean that it’s not safe for you to drive, and you shouldn’t drink alcohol when on opiates.

I’m not sure if it’s the same with what you’re taking, but the few times I’ve had morphine I’ve been extremely uninhibited – I don’t drink alcohol, but my experiences while on morphine felt very much like how people describe being drunk. I can make a complete idiot of myself and come out with all sorts of slightly inappropriate things. In hospital, the nurses and my family know it’s due to the drug so it doesn’t matter and it's funny, but I don’t think I could ever take it while trying to function in normal life for this reason!

So I would say the main signs that might suggest it’s not good for you would be: if you find yourself nervous about the idea of having to stop taking it; if you’re having to increase the dose to get it to work; or if it is interfering with your ability to go about your life safely and appropriately.

If there are long term health risks, my doctor hasn’t mentioned them in relation to codeine. I think opiates can be used safely long term, but whether it's suitable depends on the individual.

I appreciate the response. Morphine doesn't effect my mood or cognition. I never "feel" high or drunk even on 120 mg po in a 24 hr period. What I have found is that I can live an almost normal life at that dosage with diarrhea and pain at tolerable levels. Reduce it and my symptoms increase. So, yes, I feel nervous about not taking it. I'm sure I've developed a tolerance. But the amount of drug required has not increased. It dismays me that my doctor is willing to allow me greater discomfort in order to fix the amount of MSIR to his comfort level. I am to discuss the matter with my PCP today; I don't expect miracles. Just a little understanding would be nice.

How long has this doctor been prescribing the med for you? You may benefit from seeing a pain specialist. They are more comfortable working with pain meds in general, and have the facilities to manage long term patient compliance. I have had crohn's for over 20 years. I was addicted to pain killers, so I know the pitfalls. What you are saying is logical to me. If you don't have addictive tendencies, and you are careful, it's possible to do. My opinion, as an addict, is that morphine sulfate didn't trigger any addictive response when taken in pill form for pain (no high). This is different from morphine iv after surgery. I had such a fear of pain that I was terrified of not having more or enough pain medication, and I don't like having "unnecessary" pain either. I like to be in control, and doctors don't always work on the same time-scale as normal people. I don't know if any of this helps you. Good luck.

geraldherrin said:

I appreciate the response. Morphine doesn't effect my mood or cognition. I never "feel" high or drunk even on 120 mg po in a 24 hr period. What I have found is that I can live an almost normal life at that dosage with diarrhea and pain at tolerable levels. Reduce it and my symptoms increase. So, yes, I feel nervous about not taking it. I'm sure I've developed a tolerance. But the amount of drug required has not increased. It dismays me that my doctor is willing to allow me greater discomfort in order to fix the amount of MSIR to his comfort level. I am to discuss the matter with my PCP today; I don't expect miracles. Just a little understanding would be nice.

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It sounds like it's working for you. Feeling nervous about stopping it because of symptoms returning isn't the same as addiction. However, doctors have to cover themselves - if you were to become addicted, your doctor would be responsible, so perhaps you can understand his reluctance. Doctors often work to set ground rules which don't allow much freedom to adjust to an individual's circumstances. But I take it he's been prescribing it up until now - has he told you he's not going to continue prescribing it? If he does, he should at least offer you alternative treatments to try.

I think for discussion purposes morphine should be treated like any other drug. Then the questions are, how does morphine help with Crohn's, specifically with inflation, how does it help to increase a patient's quality of life, what are the side effects short term and long term and what are the alternatives to it?

I have no experience with morphine sulfate. What I read on the internet is that it is mostly prescribed for people with severe pain during flares of Crohn's. I am not sure if it is intended to help with the inflammation and thus with diarrhea.

Personally, I'd say that taking something for the pain on a constant basis, which might also help with diarrhea should only be a plan if this actually leads to remission and a decrease of any inflammation (which is the reason for the diarrhea and pain in the first place). If the morphine does not help with the actual problem (inflammation), I think it is quite risky to mask the problem long-term by using morphine.

Your doctor could probably be swayed with some evidence that morphine sulphate (similar to e.g. marijuana) not only treats the pain, but also helps with inflammation. Not sure if there are any articles etc. on that topic out there.

My doctor has continued the morphine but has added tincture of opium for evening and night control of symptoms. This seems, to me, reasonable. I have been on both for over three years now. I do fear pain, especially if I think it unnecessary. I have pain with every meal. I believe the Humira has controlled further major flares (last one at 33,000 feet on a passenger plane). Am I in "remission"? I don't know. But if I am not in hospital, and tolerating the diarrhea and pain, I can deal with that. Thanks to all who responded.

Hello!
So, I know my two cents here isn't going to be liked. I'd venture a guess that if you have low-grade pain every time you eat, whatever you're taking for your crohn's isn't working that well and you and your doc should try other treatments. I was doing something very similar to you with quality-of-life and painkiller use stuff. It ended up being that I wasn't paying close enough attention to my strictures and I perforated, leading to two surgeries and two abscesses and an anastomotic leak in the past three months. It was miserable. I would just ask you - as a philosophy student - to question whether the MS is *actually helping your crohn's,* or if it is simply helping you get by day to day, because there is a difference. Have you tried medical marijuana? I know some kids who claim to be able to read Hegel better high. It's also seemed to help some with D. I also saw a GI today who said she's seeing a trend with patients in their 20s - managing our illnesses (often involving painkillers) but not being that proactive about treating them, if you see what I mean here. She said she's seeing a bunch of young people with old strictures perforating. If your inflammation markers are decreasing and all lab results point towards an improvement, then I guess you aren't really hurting yourself. I just am sounding like a worrier because I wouldn't want to see someone end up in the position I got myself into with similar stuff. I hope something gets you where you want to be. xx

I appreciate your reply. It is thoughtful and addresses my concerns. Yes, the MS gets me though the day and makes living tolerable. I would like to try medical marijuana but I do not live in an area where that is an option. I am sceptical that Hegel would make any more sense high. I'm working on Wittgenstein now. Lab results suggest stable condition. But I wish that I dd not have to eat. I'll try the MS and tincture of opium combination and see how it goes. Wish me luck. With crohns and Wittgenstein.

I take hydrocodone prescribed by pain management for my crohns pain. My GI does not like me on this med because of the so called rebound pain with narcotics on the gut. When I get in so much pain and take hydrocodone more scheduled I sometimes wonder if my pain gets worse due to this rebound effect. Have you heard about this?

jbpharmd said:

I take hydrocodone prescribed by pain management for my crohns pain. My GI does not like me on this med because of the so called rebound pain with narcotics on the gut. When I get in so much pain and take hydrocodone more scheduled I sometimes wonder if my pain gets worse due to this rebound effect. Have you heard about this?

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I really don't believe rebound pain comes from opiates, but this is just my opinion. Now getting off opiates for some people causes a whole new set of pains. Like being unable to sleep, body aches like flu symptoms. Etc... Same thing happened to me from going off an antidepressant, even when I tapered. Still suffering so my PCP is making me return to a different one as it helps prevent stress and stress cause more flares. Vicious cycle. I say, do what works for you while you can. If the time comes when it causes problems , deal with those then. But many people live on opiates their entire life and it is just fine. It's when they go off them that their bodies fall apart.

723crossroads said:

I say, do what works for you while you can. If the time comes when it causes problems , deal with those then.

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While I understand the importance of living a better quality life and that pain medications can manage symptoms, in the end that's all they're doing. As mentioned by acc929, its very likely that it could lead to a perforated bowel and more surgery. Dealing with something like that is life threatening so I wouldn't advise to wait and deal with that problem if it comes (which hopefully it never will geraldherrin).

Keep up with testing geraldherrin to make sure that things aren't getting to a dangerous point. As long as you're stable and not getting worse I don't see pain management as a bad thing at all. I also understand that you're doing much better now than you have been in the past which is wonderful, again, just stay on top of testing (having regular scopes done and blood work etc) to make sure all is well inside.

I think the problem with worrying that painkillers are masking symptoms is that sometimes that's the only option. It can be very difficult to find successful treatments and get Crohn's into remission or heal a particular complication, and a lot of life can pass you by while you're trying to do so. If you're having regular tests to assess whether you are masking something serious, sometimes using painkillers for a while to improve quality of life is the best option. Ideally you don't want to be on painkillers long-term (though that goes for a lot of Crohn's meds too), but if painkillers make the difference between being functional and non-functional, and if you're taking care to identify and address the exact cause of the pain as much as you can, why struggle on in pain hoping for a remission that doesn't come?

UnXmas said:

I think the problem with worrying that painkillers are masking symptoms is that sometimes that's the only option. It can be very difficult to find successful treatments and get Crohn's into remission or heal a particular complication, and a lot of life can pass you by while you're trying to do so. If you're having regular tests to assess whether you are masking something serious, sometimes using painkillers for a while to improve quality of life is the best option. Ideally you don't want to be on painkillers long-term (though that goes for a lot of Crohn's meds too), but if painkillers make the difference between being functional and non-functional, and if you're taking care to identify and address the exact cause of the pain as much as you can, why struggle on in pain hoping for a remission that doesn't come?

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Not saying this is wrong, but somehow it sounds like drivinga car with engine troubles, but instead of trying to get the engine fixed, you put earplugs in your ears so you don't hear the screaching and gurgling noises of the malfunctioning engines.

Jennifer said:

While I understand the importance of living a better quality life and that pain medications can manage symptoms, in the end that's all they're doing. As mentioned by acc929, its very likely that it could lead to a perforated bowel and more surgery. Dealing with something like that is life threatening so I wouldn't advise to wait and deal with that problem if it comes (which hopefully it never will geraldherrin).

Keep up with testing geraldherrin to make sure that things aren't getting to a dangerous point. As long as you're stable and not getting worse I don't see pain management as a bad thing at all. I also understand that you're doing much better now than you have been in the past which is wonderful, again, just stay on top of testing (having regular scopes done and blood work etc) to make sure all is well inside.

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I do agree with keeping up on testing too!

But like unxmas said, why not use whatever means you have to have somewhat of a normal life?

I certainly agree that we with crohns need to closely monitor ourselves. But I feel that we are sometimes stigmatized because the ONLY drugs that control diarrhea and pain together happens to be morphine and other opiates. At a hospital once when I was traveling, they thought I was a drug seeker until they saw the CT of the abdomen. At that point, everything changed. I wish I did not have to take these drugs. But the blunt fact is that I need them, that I must take them, probably for the rest of my life. I am probably in " remission" because I have no new obstructions. I want to keep it that way. By the way, I also suffer from anxiety and panic attacks. Yet another gift from crohns. Thanks to all and interesting comments.

gerald, azathioprin helps me keep in remission which means I have no pain and no diarrhea. Same for many people who are on remicade or humira or cimzia. So I think the statements that morphine is the only drug that controls diarrhea and pain together is correct.

On the topic of remission, clinically that means a. no elevated inflammation markers in your blood tests (CPR etc.), b. no symptoms as in no diarrhea, pain, cramping, nausea, c. no tiredness or fatigue. And this state has lasted at least for the last 6 months or so.

You of course do not have to defend your decision of use of morphine sulfate. The only reason some people (me included) might be skeptical is because morphine is not a standard drug to treat Crohn's. If it were and were working much better than biologics or immunosuppressives or a combination of those, I would be the first to use morphine. But you cannot exclude that it merely suppresses your pain while you have constant inflammation that leads to scaring and potentially surgery. And that would be dangerous and problematic.

Alex. You're very lucky to have found a drug that put and keeps you in remission. Not all of us have had the same good fortune yet. As you can see, the poster (gerald? i gather?) is taking humira. I think what he likely meant is that, for him, the only drug that controls his symptoms is MS. I don't think he is claiming that it necessarily *treats his Crohn's disease,* and I don't think he's portrayed it as ideal to have to take it at all. Given that pain medication is such a touchy topic out in the world already, I don't think we need any added judgment or condescension in a community of people trying to find solutions to the problem of suboptimal health.

Acc, I completely agree. I did not want to judge him at all. Quite on the contary. What I tried to say is that it is important to consider the consequences of using morphine, which potentially could be severe (constant inflammation despite humira, which however stays untreated because morphine masks it). Humira is not the last resort for Crohn's. You could combine it with immunosuppressives. You could change the dosage. You can change your diet. You can add stress relief, vitamin and other supplements, sport and many other things that help to put you in remission. For many years I had problems despite taking aza. Aza didn't put me in remission, it just helped me to get there. If I had taken pain meds, I might never have had the incentive to actually find the right mix of Crohn's management measures for me.

What I am trying to say is that the morphine might just mean that gerarld gives up to actually get the inflammation under control. And that would not be good.

Is there any evidence that diet, stress relief, vitamins, supplements or sport actually put Crohn's into remission? They may not carry the same risks, but they don't stand any better chance of putting Crohn's into remission than opiates do. You can end up spending a lot of time, money and energy (or at least I did) on non-medical treatments and not get anywhere at all.

In response to Alex, I guess I would say that the Humira has prevented further inflammatory damage. But without MS or tincture of opium (which are only anti-diarrheals effective for me), my weight would collapse back to 130ibs, and 20 plus bowel movements in a 24 hr period. Thus MS IR 30mg has given me my life back. I now weigh 165 pounds, perhaps eight bowel movements in a 24 hr period. And I have stayed home, out of hospital. I should add that when on Remicade, I developed multi-drug resistant TB, bilateral pulmonary emboli, and nearly died. I am quite happy to take MSIR and tincture of opium and smile at those who disapprove. And I'm reading Wittgenstein this summer and taken an advanced philosophy course this fall. That sounds good to me. Has anyone ever tried bulk increasing meds to their diet in order to try to have more normal stools? Has it helped? This has recently been suggested to me?

Just to clarify, I know diet, exercise, etc. have other health benefits, but with Crohn's they only work at the level of symptoms, the same as painkillers, they don't actually target the disease or inflammation, except in the case of vitamins or supplements to counter specific deficiencies which may have resulted from Crohn's.

For some people, non-medical treatments just don't help. For some people, painkillers don't help either, or they cause addiction or other side effects that make them inappropriate. But in some cases painkillers can be very efficient. It may well make sense to try more conservative treatments first, but you can spend a lot of time trying every medication, diet, and alternative treatment claimed to help with Crohn's, and trying to adopt every piece of healthy living advice you come across (though many of them contradict others, and many take weeks or months before they're supposed to take effect), but again, you may be suffering needlessly in the mean time - time when you may need to control your pain in order to manage to go to work and keep your job, or control your diarrhoea so you can get out of the house and have a social life.

I found the process of trying and failing at all sorts of treatments very wearing. At some point, if you're lucky enough to have found something that controls your symptoms, you'd want to make use of it rather than continuing searching indefinitely for something that will treat the cause. Morphine isn't something that would work for me long term because its effects on my mood and self-control are too great. But if I could use it without adverse effects, I wouldn't refrain from doing so just because it was only masking symptoms.

I mean, if transit time is your issue, which it sounds like it sort of is, then I would say that morphine is actually a decent solution given that you are fine with it and you're on humira. In terms of diets, I sort of disagree with unxmas. I think *some* people have great reactions to taking certain foods out (I took out gluten and felt miles better for a month; binged on it one day and got obstructed the next, not kidding). If you're into the leaky gut theory then there is some kind of documentation of this, if not proof. It's also just not sensible to think that diet *doesn't* affect a GI condition (or any other condition, for that matter, given the amount of our immune and neuro systems that really reside in our gut). That being said, in terms of bulk and transit time, I eat gluten free bread and bananas to slow it down when I feel the need. Sometimes I feel like it works, sometimes I don't. I'm post-op so I'm all weird right now, also. But yeah. Bananas and rice (my toast is rice-flour-based, better than gluten especially if you don't know if you have a sensitivity). Have you tried any diet changes or probiotics? I see an enormous difference in my aforementioned weird-post-op-ness and what's happening down there when I take a probiotic (with my antibiotics) regularly. Never thought it would have been that helpful but it has been. I think what some people are also forgetting is that you said you've had four resections. To have issues with transit time after that is likely pretty natural, but still perhaps not necessarily common due to the number of surgeries, and so it could require an equally unorthodox solution.

Certainly not forgotten acc929. That's actually the biggest problem unfortunately. Its very likely that the pain is simply from the scar tissue from the surgeries themselves. That can't be treated with medication at all yet I wouldn't opt for another resection unless it were needed to prevent an obstruction or perforation. More and more surgery leads to short bowel syndrome and then its just nothing but diarrhea and vitamin deficiencies (do your have your vitamin levels tested regularly geraldherrin to see if you need supplements? Scar tissue doesn't absorb nutrients either) yet the surgeries alone could have caused geraldherrin to have constant diarrhea to begin with. So if its a case of scar tissue and diarrhea caused by all those surgeries then it makes sense to treat the symptoms with whatever helps and as mentioned, the only real issue with the opiates would be constipation (which you don't have an issue with clearly) and to watch out for addiction (although I did read somewhere about men possibly dealing with Erectile Dysfunction when using opiates, here's one study that mentions it: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2951625/). Other than those I haven't read anything that states it can cause any other harm. As long as you're able to function (driving is a main concern as well as mentioned) then it shouldn't be an issue.

Have you talked to your doctor about having a strictureplasty done geraldherrin? What sections were removed? Just some of the small bowel, none of the large intestine at all or the cecum, ileocecal valve (removal of this can cause permanent diarrhea in many patients)? Do you know how much in total was removed already?

As for bulking up the stool, acc929 is right on again. What she's talking about is the BRAT diet (bananas, rice, applesauce and toast). It doesn't have to strictly be those four items but its basically bland starchy foods.

As for the pain after eating due to strictures, have you tried softer foods in general? Making soups and stews into smaller soft pieces (be sure to drink the broth as much of the nutrients are in there) can help to reduce the pain along with smaller and more frequent meals.

¡BRAT! THANK YOU Jennifer I knew it was a B- something!! I was thinking BANGS, which I realize now has to do with French and adjectives that go before nouns. I knew something sounded off there. It was driving me nuts. I even tried googling. Flagyl sucks it's making me dumb. Word on the liquid-y stuff, too. It's not sustainable but the month pre-op when I was on enteral nutrition was the first month in years with manageable pain. Boost Plus is your friend! Still drinking it post-op I think the prebiotic fibres might help the maltodextrin from wreaking havoc, which I think makes it different from Ensure?

LOL, you practically spelled it out too. Just left out the A for applesauce.

Just another note: on one follow through small bowel series, my transit time was thirty minutes. Thirty minutes. Only MSIR and tincture of opium slow it down. Anything else might as well be water.

I know this is an older post but im in a somewhat similar situation. I was diagnosed jan '12 but i think i have had it at least since i was 13 or so, when i had my first fistula. No 13 yr old should have to exp what i did, but thats another story. Quick rundown i droped 25%of my body weight maybe a lil more over the course of 6-8 months. I began having severe pain, nausea, inability to when hungry, they tried 6mp, humira, i asked for pain meds at tge time and it was a godsend, i had to take them fairly regulary throughout tge day, but it allowed me to function and kept all the cramping and naseua away, while allowing me to be able to eat, and not have terriblely violent and excrutiatingly painful movements with stomach spasm that felt like i was trying to give birth. Dont get me wrong after eating i would still have urgency, but not nearly as frequent nor was it nearly as much throughout the day. So when they refused to give it to me or say it would take the drs asst like 2wks to get the script filled, more andore i felt like i was being treated like a pill seeker or some kind of junky. I am fully functional and as long as i stay within my doseage i am fine, like anythi g tho if it is done inexcess the effects can be euphoric. The only time i have felt that is during extreme bouts of pain where i might take an extra pill to avoid going to the er. Everytime i have stopped taking pain meds, i end up back in the hospital. Not right away, and not from withdrawals, its, and although i may be dependant, and due to that had withdrawl symptoms, i dont feel that i am an addict, although i def struggle with feeling terrible about myself because honestly noone understands and usually when i explain this i can totally tell dr or friend, that in their head they're like, "rught, sure thats why". Even my parents from experiencing it first hand have come to realize that i am not looking for a high. Its the only thing that keeps me able to work, i still have straight water mostly during movements, but i dont get gnarly spasms that cause me to be barely able to crawl into bed. Im down to 112lbs. I cannot keep weight on, and the more i try to stop taking meds tge harder it us too eat. I began getting them off the street when the dr would drag ass or just flat out say no. I knew what was at least giving me a quality of lifw, but the point is i shouldnt gave too, its soo dn expensive and obvioysly feel like a junky more then ever but i cant keep affording 9k dollar er tabs among all the other hospital bills i have racked up from mris and dr visits and ct scans, incusion visits, fucking never ending. I hate how i feel, especially since the federal gov changed the schedule of opiates drs basically dont want to prescribe any kind of opuates unless your dying of cancer or post op to sometging fairly major which is such a joke. I guess i just dont know what to do, sure theres a good chance i could catch flak here as well, but honestly, i hate the fact that i have to take them, i wish i didnt have to rely on them, i never had to prior, iny younger years, now i cant even surf or do anything active caus e i just get to run down. And like i said, i am fully functional, i have accomplished quote a ut and

Have you considered medical marijuana? I used to be on major quantities of pain meds. It almost ruined my life. Now, the only drug I use for everything is MM. High cbd tincture for inflammation, vaping for thc. It has helped more than humira or remicade without the terrible side effects. Vaping alleviates bowel spasms, nausea, anxiety, and helps with general well being. I feel like I might just live.

darster said:

Have you considered medical marijuana? I used to be on major quantities of pain meds. It almost ruined my life. Now, the only drug I use for everything is MM. High cbd tincture for inflammation, vaping for thc. It has helped more than humira or remicade without the terrible side effects. Vaping alleviates bowel spasms, nausea, anxiety, and helps with general well being. I feel like I might just live.

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Hey there, i didnt even know that i hit submit, it was late, and i was in such excrutiatingnpainni passed out and inm u stve hit the suitbbutton accidentally, thats y the post is abruptly weird. So, yes i b have tried cbds, and mm, vaping only helpsnif i vap a dab of shatter or w/e the efff u wanna ca) it. The cbds were making me feel the same way the remicade did, it just made me really uncomfortable allbthe time, my docnis b pretty sure i have alot of scar tissue at this n point from nothing working and having this 4 yr long flare/ non remissive situation. I wish it wasnt the way it is, but i am not lying when i say that the opiates cause such a relaxing sensation in my gut i can actually feel my body relax, and yes like others, my feet, ankles, knees, back all hirt, my joints, when i have a bad stomach attack like last night even meds couldnt help, i ended up passing out from exhaustion. The bottom b of my feer, the bones on the ball of my feet hurt, almost like theres not enough meat to pad the bone. I honestly dont know how much more i can do this. I feel as though im dying as it is, and i honestly wish my situation would either improve, or just get it the fuck over with. Not like this is living, not like i can participate in life, and im tired.... just tired... tired of not being believed, tired of being judged by hypocrits and people who have never felt this way. I would never wish this on someone, wver, but sometimes, just sometimes, i wish i could just gove people a taste of what this is like to deal with, wspecially when it feels like you arent getting help. And onenother thing, i could totally understand a drs want not to prescribe opiates if say the patient was unwilling to try any kind of treatment, and saying that the only thing that will help is pain meds. Any and every medication, or treatment that has been suggested i have gottennon board with, all the constant pricks, which i love cuz nurses are so pig headed they dontnlisten to me and put the iv where they want and more often than not they blow up a vein, all the mris, tests, u ne it and u have probaly experienced it all as well. I jist start asking myself why, whats the point, in the meantime til they find a solution i have been constantly suffering, i ask for help, relief, try to explain why the opiates are so ilportant for "me" i not saying that this ia the right route or the route for everyone, but i have tried anti spasmoids, bentyl, u name it in terms of alternateeds, nerve blockers, it all just made me feel shittier. Oh and by the way when i told the doc i smoke she was like well u have to quit.... wow ok... when i asked about the success of cbds that i have been reading about on forums, now not everyone has these results, but i have read about people feeling tremendously better after the very first dose maybe six hrs later... she had no info on it they just hear marijuans even tho theres almost zero thc in hi grade pharm cbds which is what my friend gave me, it has healed cancer cells in other people he has givin it too. Just wasnt helping me. I am just feel like the medical community is failing me and yet i still pay over 400 month for med ins. and i ask what for, i feel like they dont listen and like noone cares, like im just a nuisance. Depression is an understatement.

Sorry you are having such a hard time I honestly think you might want to give MM another try. Maybe even just to alleviate some symptoms. I understand how you feel about pain meds. I too felt it was the only way. Doctors couldn't prescribe enough. I also took Xanax, valium, and anything else I could get my hands on. Being physically dependant on a drug sucks. But MM wasn't as available then as it is now. Are you in a state friendly to marijuana?

I have taken Norco for the crohns pain for quite a while now I have to take it for back pain. I just take 250 mg 2 x day. My doctors are pretty good about it esp as I am old.
Paregoric ( tincture of opium) was a mainstay in IBD treatment as recently as 40 years ago so there is a lot of history of using opiates for IBD.
As for MM that helps a lot and makes the opiates more effective so you use less. THC helps too so don't be stuck on CBD only. Edibles may be more effective.
Keep at it sooner or later you will find something or a combination of something's that brings you relief and also provide intestinal healing.
Don't neglect diet and probiotics.
Good luck

Robrich said:

I have taken Norco for the crohns pain for quite a while now I have to take it for back pain. I just take 250 mg 2 x day. My doctors are pretty good about it esp as I am old.
Paregoric ( tincture of opium) was a mainstay in IBD treatment as recently as 40 years ago so there is a lot of history of using opiates for IBD.
As for MM that helps a lot and makes the opiates more effective so you use less. THC helps too so don't be stuck on CBD only. Edibles may be more effective.
Keep at it sooner or later you will find something or a combination of something's that brings you relief and also provide intestinal healing.
Don't neglect diet and probiotics.
Good luck

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Thx rob,
My crohn's, since it originally reared the entire extent of itself, has been vicious, the best word i think would be agressive. I do try to watch my diet, although i hate eating as no matter what i eat causes pain in digestion[right, left and middle in that order, as well as bm's. And no matter what i eat it is basically liquid sawdust, always, even with the opiates. Its been slowly getting worse. This morning im 109lbs, and im 5'6", should be closer to 150lbs. I have never been this light wxcept when i caught a cold last year. It is quite disconcerning. I really am trying not to stress out, but there are so many other factors that would take to long to explain that are just due to life, and the effect the crohn's is having on all other aspects of my being, cuz its def not a life, its just existing. Taking up space, wating o2 thats more suited for people who are actually contributing to society. I dont mean to be debbie downer, but im getting ready to go on 5 yrs of being like this with no end in sight and nothing seeming to work. Surgery just scares me cuz im afraid the chance of it showing back up thus requiring further surgeries is just a concern i have, i also feel like it could be what ends up helping anday be becessary to get rid of dead/scar tissue as well as fix any strictures or fistulas i may have as they think that i may have a fistula to the bladder. Which would explain why for the last 5 yrs it has been just as painful to urinate as it is to bm. Sometimes feels like i have a srone or some std. I spend alot of time in the restroom. More so than a year ago today. And btw, regarding what ur ref to opiates and ibd treatment in the past, i too have done quite a bit of research and have found that morphine and like opiates really helped CERTAIN patients with pain, cramping, mys le spasm, quietung the bowel so to speak, and thats how i feel, and im not proud of it and i def feel terrible about myself. I hate taking them, but at the same time, if u were me, and it felt like something was slowly killing you, in a manner that was quite painful, i could be wrong, but its hard to think that someone wouldnt want what allows them reluef, to feel better, to be able to eat, sleep, function, work, contribute and feel like part of society again. Now im not saying its aira le drug, or that it even makes me feel 100%, but it does take alot of all the things that would normally make me want to stay at home in bed close to the toilet. Sorry for the rant, it has just been a really rough passed few days, and im feeling like the medical community is failing me, and at the same time i dont have the energy to stand up for myself, which makes me just as much at fault, but i must admit, after always having to go through very similar situations with most doctors regarding the prescription of pain meds usually ends with them making me feel profiled, not necessarily a junkie, but def judged in some way, which after time and time, just wears on me and i just become resigbed to the fact that this is just the way it is, and noone is going to believe or help me and nothing is going to change that. It just is what it is. And that is a very disappointing feeling in our day and age. I apologize again for ranting, thank you for the response

Big boss you are absolutely correct that you should not have to suffer
Where are you?
I think you need 2 things right away
One a sympathetic doctor, could be a primary care or internal med to help with the scrips.
Second you need a good GI to evaluate your disease, scopes, blood test etc. and to keep trying some different meds and or combinations to get it under control. Surgery esp a resection saving your rectum was very helpful for me, since then I have suffered from fistulas but the pain D etc. is much lower.
Hang in there, keep fighting eventually you will come around.

I also regularly (almost daily depending on the flare) use percocet (oxycodone) to be functional. It is often times the only thing that helps me get out the door in the morning, go to work, and have a semi-normal life. I know that it's less than ideal, but I currently have no medication options left. I have been on and failed every available Crohn's medication, so while I'm figuring out my next step (perhaps a permanent ielo), this is how I need to manage.

I've been on Percocet for almost 2 years, and I have no dependence issues with it (besides needing it to manage the pain). I never take more than the smallest does possible to stop the diarrhea and get through the day. I hate the stigma that's associated with it, because I have never been irresponsible with its usage.

I know that it masks the symptoms and that there are definite downsides, but I think that for all of us with Crohn's we have to do what we need to do to live as functionally as possible. I've been in remission once in 7 years and that was through a clinical trial drug, which I have no hope of accessing anymore (prochymal). I am very careful about my diet and have tried every alternative treatment under the sun it seems, but realize that at some point you have to accept a less than perfect situation, which is how I see the pain killers. I'm still trying to find remission, but I still need to find a way to go to work and live my life in the meantime. Percocet allows me to do that.

okhoney said:

I also regularly (almost daily depending on the flare) use percocet (oxycodone) to be functional. It is often times the only thing that helps me get out the door in the morning, go to work, and have a semi-normal life. I know that it's less than ideal, but I currently have no medication options left. I have been on and failed every available Crohn's medication, so while I'm figuring out my next step (perhaps a permanent ielo), this is how I need to manage.

I've been on Percocet for almost 2 years, and I have no dependence issues with it (besides needing it to manage the pain). I never take more than the smallest does possible to stop the diarrhea and get through the day. I hate the stigma that's associated with it, because I have never been irresponsible with its usage.

I know that it masks the symptoms and that there are definite downsides, but I think that for all of us with Crohn's we have to do what we need to do to live as functionally as possible. I've been in remission once in 7 years and that was through a clinical trial drug, which I have no hope of accessing anymore (prochymal). I am very careful about my diet and have tried every alternative treatment under the sun it seems, but realize that at some point you have to accept a less than perfect situation, which is how I see the pain killers. I'm still trying to find remission, but I still need to find a way to go to work and live my life in the meantime. Percocet allows me to do that.

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I have been on norco for close to 5 yrs now, and a i am very opiate tolerant, as it does not bother me like others have issues with it. I will admit, that my level of need to feel relief, has increased over the years as well as my disease is slowly deteriorating my body. Yesterday, i finally got the results of my most recent mri, and the doc told me surgery is most likely the best possible solution, as the inflamation has subsided, however there has been significant permanent damage resulting in scar tissue as well as narrowing in 2 places and a fistula from the bowel bewtween two organs up to the small intestine. If i remember correctly that is. I was quite upset yesterday when speaking with her as i was feeling quite failed due to tge fact it had been over a week i had tried to get a refill from my doc, then her nurse told me to email my primary, so i did that and my primary basically gave me enough pills for about a day. I do take more than most and have been completely honest with my docs. The hardest part about yesterday was my gi telling me not to beat myself up, and that i had a real legitament reason to be depending on pain meds. To me it was so frustrating, well if you are telling me not to feel guilty, y is it that you are afraid to write me pain scripts or give me a more potent opiate so i am not relying on such large doses of something. She even went so far as to say, that if i didnt have a true legit reason to want to take what made me feel better, she said that she would just tell me to get over it... so as being so upset on the phone, when she asked if i was ok, all i could tell her half in tears was that i was just really struggling with the fact that for whatever reason i said, " whether its your fear of the laws being changed or whatever the reason, it makes it very difficult for me, because it is difficult for you for w/e reason to help me and all i can say is it is drustrating and it is just very difficult to deal with" thats all i could say without totally breaking down. I think she understood what i was getting at. Without pain med i really am afraid to eat, the pain, discomfort, cramps, are just too intense. I have always stated that it is my goal and intention to mot rely so heavily or should i say at all, on these things if someone can get my disease under control. I read an article in a med journal last night, while on the toilet, about ibd patients and opiate use, and the level of dependancy that goes up in ibd'ers however, the onteresting thing it fid mention was once the disease was able to be brought under control, it was surprising how many of such ibd patients were successfully weened off the opiates. As such, I have stated the exact same thing, that although I am aware that there is going to be a period of hell to deal with, as long as my disease is under control, i have every interest in stopping taking pain meds, as it is not something i have ever had to live with prior to the crohn's to get by and if I am healthy i really have no interest in continuing. But unfortunately for me, nothing has worked, and wvery doc i see says that mot only is my crohns aggressive and severe, but at my age, it could easily continue to reappear in the future, wven if removed by surfery using a resection, which i am both aware of and quote concerned about myself. I am aware that just because others have had the experience of such reoccurrences following reaectioning, doesnt mean that i am going to follow in the same path, however, the chances are greatly increased due to my age, lvl of severity, and agressiveness. What scares me is that nothing wirked, we cut it out, and it just keeps coming back slowly taking my digestive track over. Now i only weigh about 109 lbs now, as i cannot put on weight noatter what, eating, digesting rite before, during and after bm's are so fucking painful, i want my dr to explain toe why i am made to suffer just because there is no treatment that is affecting my well being in the meantime. I am fully aware that it is nothing more than a bandaid, but isnt that what the purpose it was put to serve? So that during the search or trial process of different treatments to attempt at remission, and when said treatments are not working, how is it that i should not be allowed what brings me relief. Without it i end up, curled into a ball in the er, and luckily for me it seems that the er drs around here are somewhat compassionate as well as educated on crohns moreso than i had expected, as usually the only person that doent make me feel like a effing jinlie is the er physician homself, immediately following his lil questionaire, he asked so, how bout we give you a little bit of dilaudid, and he even asked me if i was ok with opiates, when i said yes and that i was somewhat tolerant of opiates, he ordered a second shot before i left the er a couple hours later. His understanding and kindness made me cry, as he was standing there during the admonistration of the first shot and literally saw me uncurl and able to lay flat on my back within ain or so of the injection. I am not a junkie, however after having to experience such wonderful 5yrs, i def have come to a different view, as well as learned not to be so quick to judge people. By the way also have followed the advice of my gi dr and went to see a pain management dr, and the first thingbhe told me was that he did not beleive in painedication, riiiiggghhhtttt, well nice meeting you, take care and have a good day, this was the pain mangement office right? Ok just checking. By the way, i got tgat 2 times back to back from diff doc from dif providers in dif cities. Tell me thats not a amazing confidence booster. I really want to write a letter explaining how i feel, and that although i understand what is going on with the laws changing and drs personal opinions about what should and shouldnt be used in ibd patients for pain treatment, and i realize there are side effects and other potential side effects from long term use, but hey guess what i would gladly take those at this point just to not feel as though i am sufferi g, whats the good if i dont take them or not afforded them and i am so miserable that i decide to kill myself, cuz thats how i feel. The constant feeling of looking for help, following dr protocol, and doing all requested tests, try all rwquested meds, wven if they make me feel like crap, all just for nothing to work, but god for bid i say the only thing that allows for my appetite, ability to eat, sleep, etc. is when i am taking some form of opiate, immediately i see a switch go off. I just hate how i feel, im tired of going into more and more debt just to find out nothing is working and all the while i feel like im left out in the cold to suffer and fend for myself. And fend for myself i shall do as long as physically and financially possible, cux i can tell u this, if i have any way to help myself feel better at this point, i could really care less what others say or think, let them try this, all by themselves no less, no friends to rely on etc. and see if they dont have a similar outcome or feeling. Sorry for the lengthy responses, im so infuriated that i just dont know what to do, im afraid ill end up in the er, where i end up getting pain meds administered as well as sent home with a script, all for the bargain price of $9k. Chump change if u ask me... im sorry ill stop, i really do apologize for the rant. Thank you so much for sharing your situation with me. Hopefully things will improve for you. And by the way, i have no problem accepting that at some point, when nothi g is really working, that although not ideal, i would rather live dependant on opiates and be able to have and enjoy a life as opposed to suffering through an existence just waiting and hoping for a early death. The problem with that however is my confidence in finding a dr that is willing to work with me regarding pain medication for long term care, it just seems like a pipe dream to me, that cause i have ibd i am not to get opuates, just like that i am categorized, forget that everyone is different and people all react to things differently... i have to sto and try to calm down. Thx for reading those of you who take the time.

Ok honey could you tell us a little about your Prochymal experience?
I think it is the most promising drug coming in the next few years
Where did you get it?
How long did it last
Isn't it in stage 3 trials or I have heard open label?
Thanks

Sorry, i was so upset i forgot to ask, thanks rob. I have never heard of it and assumed the way she mentioned it that it had just gone away.

Robrich said:

Big boss you are absolutely correct that you should not have to suffer
Where are you?
I think you need 2 things right away
One a sympathetic doctor, could be a primary care or internal med to help with the scrips.
Second you need a good GI to evaluate your disease, scopes, blood test etc. and to keep trying some different meds and or combinations to get it under control. Surgery esp a resection saving your rectum was very helpful for me, since then I have suffered from fistulas but the pain D etc. is much lower.
Hang in there, keep fighting eventually you will come around.

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Hey Rob,
Just so you know, I have a GI doc that everyone seems to think is great, and not that I don't think she is great, we had done colonoscopy, and lots of MRI's etc. She referred me to a amazing surgeon, which I ended up having a resection of the small intestine, 2ft, and removal and repair of 2 fistulas, 1 to the bladder w/abscess, and 1 to the colon, both stemming from the small intestine. I was better after the surgery for about 6wks, weaning down off the pain meds to 1 percocet 10/325 every 6 hrs, then like out of nowhere, my body began to slowly start to feel like it had prior to the surgery. My perianal fistulas began to flare up, and overall pain began to get worse, with eating, with bowel movements, after bowel movements. I am taking 2 percs now every 6hrs. My GI is banking on remicade working but, I am not noticing any relief. I am fully aware that the pain meds mask the symptoms, but my crohn's seems so severe, that until I can find something that will alleviate or put it into remission, I absolutely have the most difficult time with functioning without pain meds. I have such bad joint pain 24/7, and when I am active, which is hard to do, it is even worse, and I am pretty much bed ridden the following day. I don't like the fact that this is what helps me as I have stated, but I also don't know of anything else that is able to allow me to have some form of quality of life. I hate feeling so trapped. It creates stress and anxiety. I am at the point where I am ready to look for a dr. that has more experience with opiates and crohn's. I spend a majority of my time on the web looking for people and or dr.s that have either been in situations similar to mine or have had experience with patients that have shown similar positive results with the use of opiates for treating chronic conditions like this. Not only is there pain, both abdominal, and joint pain, but it just feels like my body is always going, always fighting, like the fatigue you experience with a severe flu mixed with food poisoning. When I take pain meds, my body doesn't feel like its fighting itself so bad, even though it may, my stomach relaxes, my joint pain is there, but much more manageable, and my body overall seems to relax, it doesn't seem as tense. I used to think this was all in my head, but I am firmly in belief that my disease is just an agressive and severe case that doesn't want to quit. I am going to see my pcp, my GI, and my colorectal surgeon this week. I need someone to be my advocate, or I am going to have to look for a dr who understands. I honestly cant take this, I am living my life in bed and I am 36 yrs old. I can probably count how many times I have left the house in the last 3.5 months, minus dr/hospital visits. Probably have more hospital/dr visits than everything else combined. I hate what my life has become.

I feel for you BB. this disease can be really difficult to deal with and it sounds like you are going through a really bad episode.
Keep trying whatever you can to get the disease under control.
Don't give up. Are you trying combo therapy with the remi?
AZA MTX?
At his point you throw everything at it together!
Steroids, even antibiotics, until you find the answer.
BTW have you tried cannabis?
It does help. studies have shown that.
It also enhances the opiate effect so you don't need as much. Really it does.
Try it you will be glad you did

Robrich said:

I feel for you BB. this disease can be really difficult to deal with and it sounds like you are going through a really bad episode.
Keep trying whatever you can to get the disease under control.
Don't give up. Are you trying combo therapy with the remi?
AZA MTX?
At his point you throw everything at it together!
Steroids, even antibiotics, until you find the answer.
BTW have you tried cannabis?
It does help. studies have shown that.
It also enhances the opiate effect so you don't need as much. Really it does.
Try it you will be glad you did

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I was using mj, but due to the pain mngmnt deal, i agreed to stop. I havent even signed with them yet, however, the opiates help me 10x more than the mj, however when they were combined it was super helpful to sleep at night. If i had to choose between the mj and opiates, hands down, the opiates just help my whole body not feel like utter chaos. Thx tho, and i grew up smoking for the last 25yrs and quit. So just to showbu how much those kil pills help me.

Interesting to read the various responses regarding opioids and crohns. I take MSIR 30mg 3-4 x daily. Not so much for pain as for relief of severe diarrhea. Even taking that, it's still necessary sometimes to take tincture of opium (old fashioned laudanum ).Also on Humira q ten days. I have no legal access to cannabis. Wish I did. Much of what BigBoss said rings all too true. Oh, by the way, a bout with MDR TB also.....enough. Pain is every day. And I mean every day. Best relief I've found is Pernod Absinthe. Truly. Originally developed as a digestive aid. I use and pain slips away. And the taste is excellent. My doctors, of course, are sceptical.....bit works.

By the way, even more so of a help than marijuana, was the concentrate that has become ever so popular among cannabis smokers. Its wayyyy more potent than smoking bud. Its often referred to as shatter or amber, as it both looks amber in color and can be brittle and shatter if u were to drop a large piece, but if u leave it in a warm place, its can be somewhat gummy. Either way, when i smoked that stuff, i could literally feel it go directly to my stomach and a wave of calm or relaxation would come over my gut, almost numbing but thats not the right description, just utter relief. I would feel able to eat, my appetite would come back and it would def help me sleep. But i still fear the dreaded bathroom, so i would eat ever so cautiously.