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