Post Edited (Metallichic) : 7/24/2008 8:18:16 PM (GMT-6)
I am so there with you regarding the multiple pain issues. Just for future posts, it would help us to read your posts if you broke them up into shorter paragraphs. I know personally that I get lost and have to re-read things and then I get all confused. My biggest question is what were you hinting at doing? I assume you meant seeing a pain management specialist from your subsequent post.
Seeing a "pain management specialist", unfortunately, does not assure that you that you will receive the pain medication needed to adequately give you a decent standard of life. From my own experience, I've found that these PM doctors only want to do "procedures", not provide opioid/narcotic medication. They also do not treat you as a "whole person", they just want to be responsible for individual parts. I have been told about this "non whole person" attitude by several different medical "professionals". For instance, I have chronic migraines and chronic back & knee problems. Right now, I am also dealing with some serious stomach pain as well. The PM specialists I've seen refuse to treat my migraines, they have only wanted to do procedures on my back, like epidurals and steroid injections.
My last PM doctor was testing me out to see if a "lumbar facet denervation" would help my back. When I went to get the test done, another doctor examined my back and decided that it would make more sense to do some steroid injections in my sacroiliac joints, and actually give me some pain relief, instead of just testing for something that might help in the future. Best care I've seen out of a doctor in a long time. However, he wouldn't prescribe anything for the pain of doing the actual injections and said it would be 4-8 days before the steroids would actually start making my back pain any better.
The little pain medication I get comes from my Primary Care Physician. I have a big tolerance to pain meds these days, so it takes a whole lot of something to make me comfortable. I usually get Lortab for my back, but only enough to be confortable for less than four days. I only get a new prescription every two weeks, so it's only good for four good days. followed by ten crappy days. It's my doctor's way of not prescribing too much opioid pain medication. Covering his behind. Doesn't matter that it makes most of my life a living hell, as long as his "ethics" don't get questioned.
The doctors in this state are totally phobic regarding prescribing pain meds. I saw the nurse practitioner at the GI's office the other day for my stomach pain, which has been bothering me for two and 1/2 months. I have seriously bad jabbing and burning pain mid-stomach, and feels like a previous GI bleed I had two years ago. It is so painful, I ended up in the Emergency Room at the hospital on Monday night. I couldn't get an appointment see my GI doctor for over six weeks, and the NP would only prescribe two days of percocet for the pain. She said I would have to get my PCP to prescribe more percocet to get me through until my endoscopy that got scheduled in three weeks. What kind of craziness is that. It's like a hot potato and everybody's got their hands behind their backs. Nobody want to catch the responsibility. So if I want any help with my stomach pain in the next three weeks, I have to go try to weazel my Primary Care Physican into a prescription, which just should not be happening. This system sucks, so imagine my surprise, Metallichic, when your doctors acted the opposite way? Can someone explain where any of this makes sense?
My PCP doesn't want to prescribe the pain meds for my migraines either, so finally I have a referral appointment to a migraine specialist at Duke, a state away, in the middle of October. FOUR MONTHS just to get an appointment is ridiculous, especially if you have to travel out of state to get there. I sure hope the new guy isn't afraid to pull out his prescription pad. I've found something that works, if he can only extend the number of days that I can be migraine free. That would be a blessing.
Gonna stop typing now, stomach is really complaining.
Hi Metal and welcome to the CP forum. You just about wrote my past six years verbatim kid. No, No, you are not nuts. Have I got some news for you kid, sit down with a cool drink and we will visit. I have cd, uc & now lupus and plenty of the extra manifestations resulting from these 2 diseases that you just described. I could cry for you because I have been there and done that.
First off, you may not like this, but you need a new GI dr. You & I both know with these diseases its not unusual to have to keep seeking a GI thats truly understands cd and what goes with it. With all the new meds available today, too many of the older GI's want to continue with the old line of meds, evil Prednisone. Short term is fine, but when you become Prednisone dependant because of long term use its destroys your bones and many other things as you already know. Has your feet and hands ever tingled while on Flagyl, is that when the tingling began. If so, you may permanent nerve damage from the Flagyl, thats the bad side of Flagyl.
I must ask, before getting pg, you said you were on Remicade. Did it help you? Were you given pre-meds prior to your infusions to ward off any potential reaction? If Remi was helping, did your GI & OB not know you could continue Remicade and it would not harm the baby? There are several Moms on the cd forum that had Remi babies with no problems. Also, were you on Imuran or 6MP while on Remicade? Their OB talked to their GI's and everyone stayed on track.
Has your GI ever talked to you about crohns arthritis? Yes, it exists. Has your GI ever spoke to you about different manifestations that can occur with crohns? Have you had an MRI of your back? How did you tear your rotator cuff? Have you had any prior problems with any of your joints before things became severe? What are your current labs looking like? What meds for the cd are you on now? I know alots of ???????
I do not know where you live or anything. One thing I will tell you, my GI does not like to give much pain medication to his patients, especially for long term use. What he does offer is vicoden which I cannot tolerate. Most GI's do not give much for pain and its for short term use. My GI knew the pain I was in and he ref me to a pain mgt specialist for help. He was not worried about masking my cd symptoms one bit. Many crohns patients see pain mgt drs due to the manifestations of crohns, so your GI is full of it.
If you do not want to change GI's, then find out who the best pain mgt dr is in your town. Ask if you need a referral from your PCP to see the dr, alot of them require this regardless of your insurance. Be sure to call and find out if the pain dr is accepting new patients and be sure to ask if the dr prescribes pain medication and not just do injections. You have to be careful because some pain drs only do injections, which is not going to help a cd patient. Do not be hesitant or be embarrassed asking these 2 questions when calling, because there is in reality 2 different type of pain drs. If the person you speak with says the dr does both then you are ok, you just don't want one that does the shots only. Once you have located a dr that will see you, if you need to be referred there, then call your PCP and get them to make the referral.
Now, the next step is start a pain journal, starting tomorrow when you wake up. In this journal you need to state what kind of pain you are having, (burning, tingling, numbness, stabbing,) you get the idea, be specific where this pain is at, what makes it worse, what gives a little relief. Keep track of your pain levels daily on a score from 1-10 with 10 being the worst. Take this journal with you to the pain dr. appt. Give this to the pain dr to read. Keep it short to and to the point. This helps the dr understand your pain and lets him know you are serious.
Another thing is, if you are not on an anti-depressant, the pain dr may very well prescribe one. Studies and research have shown that in many cases anti-depressants can help with chronic pain and many pain drs use it as another tool. In my case I am depressed due to my condition, so it helps me with both. From my own personal standpoint, I sought the help of a phychologist at my PCP's recommendation, to help me learn how to deal with all the upheaval crohns created in my life. My physch was knowledgable of in autoimmune diseases. I have only been dx'd 6 yrs after an emergency resection of the small bowel. My cd has not ever been in remission, I am currently back on Remicade for a fistula. GI says mostly likely I have had cd for a good 20yrs.
Now, either look here at HW or go the CCFA site and get info on the extra-manifestations that crohns can cause and print off a copy for your GI and your new pain mgt dr. Your GI needs to take you serious on this stuff anf if she is not willing to, then you need to find a GI thats knows all about cd. Not all GI's deal with cd. CCFA has a lists of GI to pick from.
Ok, I have given you some food for the thought. By the way, due to not being able to tolerate most pain medications, in June of 05, I had an intrathecal pain pump implanted. Yes, my drs knew my pain was serious. Good luck, Susie