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Crohns Patients Rights In Jeopardy and Use of Oxycodone Works
Hello,
To make a long story short, I have severe Crohns disease and have had two resections in my intestines. I still work at the age of 59. I was seeing my GI Doctor and after much debate convince him to put me on oxycodone short release as oppose to extended release as it went through me with any pain relief, because of short bowel from both surgeries. I'm currently on 20 pills a day at 15 mg per pill at dosages of 60MG, 60MG, 90MG and 90MG. I take it every 6 hours and I vary the amounts depending on the pain levels.

The oxycodone does wonderful for my Crohns as I get 90% relief at the end of my last dose and 60 to 70% in between. I have never ever gone above 300MG in a day. My theory is if you take the lowest dose which for me would be 45MG or 60MG in which I do not get 100% relief until I get to the 90MG .I get 92% relief from my pain.  I'm proud to say that I have never gone beyond that dosage after 14 years and after much research found a dosage that works for me. I have been off the pain meds twice when I had my two surgeries by weaning off them and did not miss them

Here is the problem, I have been going to pain center for the last 5 years as my Dr. got scared giving me high amounts of oxycodone. At first the pain center was not happy with the amounts and try to cut me down only to see it was not helping my pain levels so they back off.. The pain center is now getting political pressure from all sides. The FDA, Whitehouse, and the group "PROP" which is trying to hurt chronic pain patients. I would assume these groups have an influence as they are coming down hard on us chronic pain patients from all avenues.

The pain center I go to and they are hard to find, out of the clear blue sky told me last month I must cut down to the equivalent of 200MG to 250MG of morphine which would be that I would need to cut myself to 11 pills or less which is roughly 166.67MG or less compared to 300MG a day. No other meds thrown in just do it. I was waiting for marijuana to get settle in Boston Mass, to give that a try and hopefully cut some of the narcotics but they will not let me do that as they would kick me out if I even try it. I said it may help me get to their goal if it would work and I still got no for an answer.  

They have already cut me 30MG of meds per day. I already feel the effect which is putting pain into my work, exercise, gardening, and walking.  My quality of life is starting to be effected and I'm trying to work with them but I'm afraid they will go all the way to 10 or 11 which would really make life a sucky place to be. I will be able to do it but I will get the things I love in life out. It's not right I should have to pay the price because someone OD on 3 or four prescription drugs. The news does not tell you that but when they OD there are more than one drug in them.

I hope to work with the pain center to cut some out but I should not have to, as I do not abuse the meds and get urine test every month and follow all their strict rules and rightly so. I also lock up my meds and go to one pharmacy as they demand. I can go 18 hours with not meds and not miss the oxycodone but the pain by then is so bad. The point is I do not miss it at all but I need it for pain relief.

Any ideas on how I can get them to feel compassion and work with me not to go that low. I really should not have to cut down at all but in order not to seem like a drug person seeking to hold on to those high amounts, I need to work with them, but I'm afraid they will go to low. Help please if you had any experience in this and what was your outcome?

Anybody with success with high amounts of oxycodone out there that helps you function in every day duties? I would like to hear from you. We are not drug seekers but unfortunate souls with dreadful diseases trying to get by in life but when we go to hospitals, doctors etc.. and we know all about the pain meds to help with our disease we are nothing but drug seekers.

I have no side effects, plus with Crohns the oxycodone works in my favor with bowel movements as the meds slow me down so I'm not in the bathroom all the time. I also feel the oxycodone helps slow the disease down I really do.
In ending, I will keep fighting for my right and all of our rights as chronic pain patients to have the freedom to have pain meds and to have the dosage we need no matter how high it may seem if it helps as live a long and productive life. Let’s stay together and fight these groups who mean to do the right thing but are going about it in the wrong way by hurting us by putting dosage limits on our quest to get pain relief.
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1711789 tn?1361311607
Hi there!

I understand your situation, but I would suggest looking at it from a doctors view point. On would never want to put ones patients on high dose opioids due to the possibility or dependence and the side effects. Also with long term opioid pain medications, tolerance develops and one would need  increasing dosage of the medication to produce the same effects  which is not desirable. Also oxycodone is not the best suitable mediation for GI pain due to its effect on the motility and hence it is desired to keep the patient on a minimal possible dose.

Take care!
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Hi Dr Kaul,
Thanks for the post as I agree one must be very careful when using oxycodone  and agree dr. must be very careful on prescribing but for me with crohns slowing down my bowels seems to have the right effect as it stops me from going to the bathroom all day. I also keeps me to hold an Engineering position in customer support which is very stressful. I have tried on many occasions to use the lowest dose possible on to see the pain increase making it hard to work, exercise (3 times a day).  As long as doctors are willing to work with us the patients to help as be free from agonizing pain. All the best Dr Kaul!!
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Hi nighthawk56,

I realize this was posted last year, but I'm 18 and got diagnosed last year with Crohn's, was taking 203 pills a week, they tried the anti-inflammatory pills, which didn't work, and they will still not give me any pain pills. I asked for at least 3 pills a month. They still wouldn't give me that. In my opinion, if i was trusted to take that many pills at 17, then at 18 I should be trusted with a few pain pills. I have recently found out I might have lupus and rheumatoid arthritis, and they don't want to give me anything. I think its ridiculous. People who have nothing wrong with them will get a bottle of pain pills and the people with actually pain get absolutely nothing.
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I 100% agree with you. I too have severe Crohn;s disease which is the most pain I've ever felt in my life. When I get a flare up, which usually occurs 22 days of the month in the morning when I wake up, I have terrible loose bowel movements but the oxycdone meds slow me down so I'm not in the bathroom all the time. I honestly consider them the magic medicane and I don't mean that because I am a junkie in anyway at all. I unfortunetly was born with this deisease and because I did not take care of it from age 15-25, I am about to turn 30 and suffer greatly.

I been on opiates for about 5 1/2 years now. Started with 7.5- 4 times a day and now I am at 30mg 3 times a day but it is no where near enough. I honestly need at least 8-10 30mg instant release oxycodone a day to function normal and no it does not get me 'high" or a "euphoric" state.. I want the right amount of medicane so I can function normal everyday and not just the days I have enough to go to work for a full day considering I am a real estate agent.

Any feedback is appreciated.
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First let me be clear do no NOT take narcotics unless u need them...I am not an advocate for them BUT 38 yrs crohns..4 resections..arthritis.. etc. I agree 110% w alex ..I take roxicodone 30mg and 8 to 10 a day is the perfect dose..it helps ..give me some life but recently one is lucky if you can get 4 a day and the long term w the cellulose expands and is not great for us but they make u take it and it's better then nothing I guess ...38 years..4 bowels surgeries only last 14 yrs have I been taking oxycodone regularly and I swear it works medicinally as well for me since it lowers our immune system some...as for bowel motility I am very aware of my disease and know when to back off during the day when I'm in partial obstruction....as a professional patient I cut back enough when the obstruction is bad.. being careful is top priority... I can't stand these judge mental posts or people that haven't spent a year in the hospital when first diagnosed and then 38 yrs of hell ... my uncles died of crohns and my dad had it bad 2...hes deceased... I am a survivor...I know my body... each patient should be treated individually and have a choice .... after 38 yrs if I can't get relief I can't survive..btw I am a naturalist gluten dairy free..many naturals just fyi...again I didn't take it regularly for many years but for me at 47 it works ...I think when properly used and for the right patient ... there should be no question ..dependency is a joke..it's OK to be dependent on drugs that break your whole immune system down ...that's ok... I'd like to see a 2015 study for people with 10 to 20 plus years crohns and pain medication regarding immune system how it work with crohns.. life and psychological factors .... I feel confident there is a positive effect to the disease but a newer realistic controlled study would be very helpful...any idea how we can get that going???
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Count me in as an advocate for oxy saving my UC symptoms. I've never reached anything close to remission until I began taking oxycontin. 3 years later I'm still symptom free!
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I SOOOOOO COMMISERATE with you!!! I have SEVERAL Bowrl conditions, Lupus and RA, Scleroderma Psoriatic Arthritis and MS! I am I'm. TON of pain, and I HATE that I am attacked by the RIDICULOUS Bowel disease FIRST thing in the am!!! I have to wear a Depends, 24/7! Since I was 54! I'm 55 now, haven't had a DATE in 3 yrs. I just won't go Bc I am a slave to all if these things!! Technically, any Narcotic pain med will slow the gut- and, yes- they dropped me down, too, from massive amounts, to 2 extended release, and 3 immed. Release/ 24 hrs!!! I said I needed more between the 2 ext. release, and was told no, by my newest pain doc- I still try to explain every month, and every month, am told- NO!!!!! I DID find another med that really helps the cramps and spasms- Hydroscyamine it's an anti- spazmotic, also Lomotil helps!!! It's an anti- diarrheal, and a mild Opiate
        My ex- husband is an Anesthisiologist, and day the FDA will hardly allow him to give the necessary narcotics yo his patients, UNDER GENARL ANESTHESIA!!! The have ALL Drs running scared., and they will come in, the task force , and immediately close then down, and take the Licence  if they don't agree with a Dr.'s prescribing habits!!! It's unreal!!! Also- ONLY a pain management specialist CAN prescribe what we need, now!! TRY the Lomotil and the Hydroscyamine - what do you have to lose??? Also- I Adore Enticort, but at $1,800.00/ month, it's cost prohibitive!!! And that IS the generic!!! Xo, Becky.
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I'm so glad I am finding this. I know the last post was over a year but I can bet many of you are still dealing. 34 yrs a Crohn's and UC patient/survivor. Diagnosed at age 6, just turned 40, been in the hospital more than I would care to recall. 2 reconstructions (no total loss thank God!), multiple abscesses and rectecalvaginal fistulas. Yippeee. Just started seeing pain specialist 2 years ago bc my gastro didn't want to keep prescribing oxycodone. Problem is PS wants to keep.cutting it. I'm only on 3-4 10/325mg daily with some days better and others worse. I think most Drs mean well, the really good ones, sometimes they just don't get it. Most especially the PS out there. I'm coming to the conclusion after 34 years of this battle this med needs to be in my life. I never liked taking meds until 2006 when I spent a month in the hospital  (not like when I was a teenager and in hospital every other month). Pain so bad I had to take something. Then enter the fistula stage, surgery to help and nerve damage because of it. Now at 40 I have an IPG which helps.some (better than none). Just really glad to know this med fight I am not by myself. Keep up the food fight all!
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Sorry to hear your struggles.  What is a IPG?
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I have IBD, but suffer w/what my husband is going thru Ulcerative Colitis/Chrons for 10 yrs. Am a nurse. What really works are opioids. However, due to governmental agencies, that do not understand the illness  and pain management we have to suffer. We can fight back by getting Dissability as I did, with IBD, & constant pain, at 57,  I couldn't barely get up for work, so I got disability and work when I can to supplement income. Now am working on the same for my husband who is worse than me. Lost 90 lbs. imagine 6ft tall weight 130. Diarrhea full blown 7-16 per day was denied, but going to appeal and keep trying. Due to illness we have lost our retirements, savings, properties.  We have no choice but to get help from government due to their restrictions on Meds that do work. Otherwise i could be working leading a happy productive life. My doctors friends say the governmental agencies don't care about that, but am doing it anyway. Don't like to live of the government but they leave us no choice. They just don't care.
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Would Trump as president help? Pain management doctors are been fined by governmental agencies for their definition of: prescribing large amts opioids, my doctor of 15 yrs lost his narcotic prescribing lisence. He was fine 90,000.00,to be payed by Oct 2016,  That left me with no doctor. I saw the paperwork, when he unknowingly gave it to me to abstract a phone number from the top page. I kept looking under the pages, saw the fines penalty paperwork from the board of medicine or government(same). He lost more than 1/2 of his practice and income. He is so stress out, that I volunteered to help in his office for free, till he can get himsel situated with new way of making money. He is not a PCP, he is a specialist, which makes it almost impossible to look for an alternative way to practice medicine or make money(same thing). many doctors and their staff are loosing income which affect the economy. Some have given up practicing medicine, it is hard to find a pain management doctor were I live. The closest one is 1 hr away. These doctors that have lost part of their practice or their practice due to this issue, don't have money to spend which is bad for the economy and less jobs availability. Bottom line is government don't care, they know all this. We need to find a way to fight back. Writing to Congress might help, and I doubt that it would even do that. We are in pain real pain. I have been in pain since I was 9 yrs old, my parents didn't know what was wrong with me. I been taking opioids all my live am 62, am still alive. I keep going to hospital when pain gets bad and low on pain Meds, costing medicare(Dissability) more money unnecessarily. That would be avoided if we could be treated appropriately with opioids which is what works. What gave opioids a bad name is years back people were driven by the bus load to Florida to opioids clinics which were opened up by a few Greedy people for the purpose to make money. this  set the whole thing in motion. Doctors were being used to write the RX getting paid over 100.00 for every RX they wrote. While These greedy people got a cut for every patient seen. Both made tons of money, the docs and the few greedy people. When the gov. found out,  everything changed and now we suffer the consequences. I remember around that time when all this was going on, I had to travel for hrs and days all over different counties in search to get my pain medications. And pay cash, not everyone would take my insurance or my insurance would not cover the Meds, because it was not the pharmacy of their formulary. We need to fight this aggravation and unfairness. I can't wait for these people in charge of this bucabkrb, come down in pain like we do, and then,  they wouldn't even care. My mother finally did have pain, she now understands, before she didn't. Should we get  a president such as Trump in place to help us? Not bad idea.
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Trump would make it worst for people like me with Crohn's disease, chronic pain/illness. He wants it back to private insurance ,but everyone should have the right to insurance not just the privileged. And with this  really bad disease it's impossible for me to work or even live a productive life because no medication works for the flare up in my intestines.  Here for I would not be eligible  to insurance and have to pay out of pocket cost 5,000$-10,000$ for certain things. The affordable care act has saved millions and will continue to! Also with the affordable care act you may be limited to so many specialist but there are still plenty of doctors that they allow you to choice from. Hillary Clinton would ultimately be the one to help out the most she has the people in her heart, trump is all for himself to make his business excell more.
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