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.
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 ******* 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.
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. 
