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!
Thank you. Finally someone else with Crohn's who sees how much oxycodone helps. I've been trying to tell people this for years, and they think I'm using it as an excuse to get high. I read that opiates have a paralyzing effect on the intestines. I believe this is why they work so well to not only relieve the constant pain, but also to control the symptoms. I don't know for sure what effect it has on the disease itself. I do know that before I started seeing a pain management doctor, I was having flare ups every couple maybe 3 months. I also had two surgeries to repair fistulas. The second one they removed 6 inches of my large intestine. I've been seeing the pain management doctor for about 5 years, and I haven't had any flare-ups at all. Certainly no surgeries. Since the government has stepped in, and the doc had to cut my pill count, I've been getting steadily worse. I've had a few minor flares, only lasting a few days. For someone who has never met me, and has no idea about how sick I am, or how much pain I am in. To have them decide on how much pain medication I should be allowed to take. That is just absolutely ******* ridiculous. Anyone with Crohn's disease is distinctly aware that life isn't fair. But to have the medication there that would allow me to have a close to normal quality of life, and be denied it by some politician who doesn't know the first thing about what we are going through every day...well it can be just a tiny bit frustrating.
I know this is an old post but i felt the need to answer it and let you and others with Crohn's know that I also believe that the pain meds slow down the disease. I was diagnosed 14 years ago and I was the first person I knew to have it. Everyone I know who has been diagnosed long after me and who do not take pain meds and rely solely on the Crohn's meds are far sicker than I am one of them even died not long ago because the meds just were'nt working for him. I spent the first couple years taking the same meds such as Predisone, Imuran and Remicade and felt terribly sick and in pain all the time so I was prescribed OxyContin for the flares up. I started taking this med daily after I started to realize my Crohn's would get better every time I was taking this pain med. Eventually I stopped all other meds besides the OxyContin to see what would happen and I got better much better. In the last 12 years I have only had a handful of flare ups usually I set it off by eating things I know will trigger it but mostly it's only a problem in some winter months the rest of the year I'm pretty healthy and if I have a flare up that just won't go away I'll take prednisone for a week or so and then get off it that's usually enough time to get the flare up to go away and then I go back to just taking my pain meds for a long while before the next one shows up. By me letting you know my experiences I am know way trying to give u any medical advice I am just agreeing with the poster that pain meds have slowed my disease as well. I know there is a huge stigma involving pain meds and of course I would hate for someone to become addicted to them or worse. I've been fortunate enough not to let the pain meds ruin me or take over my life negatively. I take enough to help me live with this disease and lead a normal life as a parent with a full time job. I don't have time to be in and out of hospitals or a guinnea pig for every knew med that comes up on the market that in my opinion has much worse side effects than my pain meds. I just wanted to let people know especially those who are suffering with this disease what has worked for me and my family/friends who chose the same route as me. It's just a shame that the only medication that has helped me is becoming such a problem for others. We're getting to the point where doctor's are no longer wanting or able to prescribe this medication because of how many are abusing them. I now get worried about what will happen when it's no longer available for people like me who really benefit from them. I can only hope that a cure will be found soon so none of us have to rely on any meds to live a happy healthy life.
Best thing you can do for yourself is get off of them for a couple of months and lower your tolerance. If any time my meds stop doing what they are suppose to I get off them for awhile (regardless of the pain) so I can get back on them. It's a rough two months but completely worth it to start over. The FDA is getting stricter on pain meds so regardless of who's in power the FDA makes the calls. They understand that opioids can be self dependent and if you have gotten up in doses that high it's bc you yourself have aloud yourself to reach that point. When I was in labor dilated at an 7 I was given a low dose of hydro and it got me high as a kite. When I started taking pain meds for digestive pain 1 pill would get me through. Eventually that one pill didn't help with the pain so I moved up too 2 pills and so on. My body got dependent and my doctor would give me higher doses. As my doc started getting scared at how much I was taking, ended up cutting me down. The low doses didn't work for me and my pain seemed more intense then ever. When ur body is on pain meds your body becomes less and less tolerant to pain. So even the smallest pain is unbearable. If you want to help your self, cut yourself off the pills for awhile to bring that tolerance down. You would have to do this every so often if you want your pills to work, bc in reality the doctors are not going to continue to give u those doses and risk all there hard work of losing their license so u can get a little relief.
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.
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.
Sorry to hear your struggles. What is a IPG?
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!
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.
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!
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???
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.
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.
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!!