Posted 10/23/2012 5:23 AM (GMT 0)
You can read my whole lengthy message if you want - but the point of this is that (I want to get well and not have to turn to narcotics for much longer, however), what experience if any, do you have with using narcotic pain medicines for relief of severe UC pain? I've been seeing a pain management doc and he has had me on relatively high doses of Percocet, and has mentioned Opana. The Percocet is barely touching my pain, and am contemplating calling tomorrow to talk to him about revisiting trying the Opana which I declined last time I was there - as the way he presented it, it is an extended release medication (although according to my research there are short acting versions of it). I had bariatric surgery and am supposedly not able to take XR medications - yet the Depakote I take for my anxiety and PTSD is extended release and the levels are showing up appropriately in my system so it's worth a shot. Anyone have any experience with narcotics and UC pain? My pediatric GI gave me morphine to take when needed on occasion, but I rarely needed it or took it. I don't like narcotics, but whatever. I can't function at this point otherwise. To get a better idea or background on my situation keep reading - otherwise, this first paragraph was just the gist of my question.
I was in remission with my UC (well technically they're not 100% sure it's UC and not Crohns, bc it's always presented itself in my colon, but in odd places but rectum included), for the last 7 years - and upon facing surgery for something unrelated I believe the extreme stress caused a relapse, just before the surgery as well as continually afterwards. I have PTSD and related to it - a phobia of sedation, so this was an irrationally huge deal to me. I cried for a week out of pure fear and horror prior to the surgery, but I was determined to go through with it and am glad I did.
Anyway, I did not respond to any medications (all of them pretty much) from the time I was diagnosed until I finally made my way to remicaid treatments at 15 years old (I'm 26 now). Even when 6mp and Immuran came out as "breakthrough" drugs - I was in the 1% of people who developed pancreatitis from taking that class of drugs, almost immediately. Yay... The remicaid treatments were incredibly brand new at the time, and luckily I live in a health epicenter in the US and was being treated at Duke Pediatrics Hospital (NC). I was one of my GI's first patients to receive remicaid and boy it turned my life around. I stayed on it until I was 19 - and felt I no longer needed the treatments and stayed in remission until July of this year - concerning the conditions I previously mentioned. I found a decent seeming GI, and jumped through all the hoops - and they found some serious craters and lacerations in a few select spots in my colon and rectum. They set me up with remicaid treatments again without giving me any warning or information regarding potential serious adverse allergic reactions. Apparently you can build antibodies against remicaid if you were treated with it for a long period of time - then stopped for a long period of time and attempt to restart them. Also, the real point of this message is that I've been in terrible pain, not to mention the typical pain that comes from using the bathroom so frequently and wiping and what not. The 1st treatment did nothing. I was surprised. My past experience with remicaid was that it helped within a day or so. The 2nd treatment, whenever they would speed up the drip I would break out in hives and rashes all over my face, hands, and feet - which apparently happens to some people and they didn't think much of it. My 3rd treatment, within seconds of the medicine coming through the IV caused me to go into anaphylactic shock. Luckily before I went unconscious I pressed the "call" button and said "help quick I can't breathe" and there was a team of people in my room in a matter of seconds to save my life.
Anyway - that was just some background information. My GI has told me that I should not be experiencing the pain I'm claiming to have. Even though I have the pictures from my colonoscopy and the damage in my intestines is quite visible, even to the untrained eye. They told me to take tylenol. No relief. I was encouraged by both my PCP and my psychiatrist/therapist to insist that he do something more for my pain. I'm not a huge fan of narcotics, personally. So he put me on ultracet. Nothing helped. Mind you, I was making a visit to the ER about once a week at this point bc the pain would just get so intense and so bad. It is costly and unrealistic to keep that up - so after no help with the ultracet I came back and talked to him again. He explained to me that although it was a minimal risk - that narcotics with ulcerative colitis can trigger toxic mega colon. I did my research - it is not incredibly common, and is more common in people whose colons are entirely diseased. So I made one more appeal to him - stating that as far as I understood, that western medicine worked by weighing the benefits versus the risks. I was not functioning at this point, and felt that the benefits of treating the pain outweighed the risks. He did not like my pointing this out and absolutely refused to prescribe anything. My first GI had no trouble keeping my on Prednisone for almost two years when first diagnosed along side trying other meds, causing me to gain around 100lbs. So anyway I spoke to my primary who is -great- and he suggested I get a referral to a pain management clinic. I called the GI's office and they said they were all for me going to one, however they would not be making the referral (not sure why the run around, really). So anyhow, my primary made the referral for me, and even he himself said he was not surprised that ultracet didn't even touch the pain. Anyhow despite my GI's insistence over the pain medicine debacle, and failing to inform me of the fact that he was very aware that often people have allergic or anaphylactic reactions to remicaid in my situation... they are supposed to be trying Humira on me soon. We'll see. Until then:
The pain management clinic so far has been very helpful, but I've only been twice. So far they've had me on 2, 10/325 Percocets, 2-3 times daily, or as needed. 1 - I hate wondering constantly if I am or will be addicted to the pain medication, and also, it only helped SOME (mostly by the high feeling that comes with it, distracting me from the pain, not actual pain relief), and now that I've been taking it for almost two months, it's not really doing anything. The last time I spoke with the doctor, he suggested I try Opana. Does anyone have any experience with taking narcotic pain medicine for UC pain? And if so - what has worked best for you? I had bariatric surgery that may or may not interfere with taking extended release medications and the doc presented the idea of taking Opana as an extended release drug (though through some internet research I've seen that there are shorting acting doses available, and perhaps he would be willing to try that). I'm hesitant to make suggestions to him as far as what to treat me with, as I don't want to come off as drug seeking, especially considering my age. I know things like dilaudid and morphine work much better, but I doubt that is something I can function well while on, let alone get a script for either. I'm just in so much pain, especially in the rectum area and the side of my abdomen (sigmoid bend of my colon) that it hurts to sit up most of the time. I had to withdraw from school this semester and stop working bc of this relapse and the complete inability to function. Without the pain medicines (which I ultimately don't want to be on forever) just cooking something for myself, taking out the trash, getting the mail, or showering are sometimes just impossible tasks. I can't stand for very long without getting incredibly ill either.
Any suggestions based on experience with pain meds and UC (or Crohns) would be greatly appreciated. I am going to call the doc tomorrow regardless.
Thanks again and sorry for the super long post - I just felt a lot of background info would be potentially necessary or of interest/use to some.