Newbie looking for help!!!

I am a diagnosed crohns patient now of just a little over a year. My gi docs feel that I have had this and potentially been misdiagnosed since I was in the fourth grade. I am now in my mid thirties and have had ulcers, upper gastronitus, peptic ulcers, and now crohns disease as diagnoses. My daily meds are Asacol Hd, dicyclomene, Celebrex, multi vitamin, and Remicaid. Remicaid infused two weeks ago and now trying Humira. (Waiting on insurance bs for Humira now...Don't even get me started)

I am struggling with severe body and joint pains that seem to get progressively worst as my day goes on along with headaches that also get worst as my days goes on. Sometimes I feel feverish but I do not carry a thermometer daily so I don't really know. I've been chomping down Tylenol as it is labeled the safe over the counter med. but I find it very inaffective for the pain. The Remicaid is not working for me as I've flared twice since being on it...hence the change to Humira.

I don't know what to do at this point. I am in pain with lack of sleep due to the pain and discomfort which makes my following day no easier. I am a married man with two young kids and have no energy for them at the end of the day after work. I recently was prescribed the Celebrex mentioned above and find 100 or 200mg no difference. I am also a med marijuana patient. I find the marijuana is great for my crohns symptoms (bowel movements, spasms, anxiety) but I find that is does nothing for the pain.

I am looking for any advice to help with this pain. I do not know what pain meds are safe for crohns and I have to function throughout the day. Wondering if anyone has had similar symptoms and how they overcame

Thank you to anyone who helps and reads my lengthy post. Please do not judge the medical marijuana thing. I know it is taboo to some and not medically approved in some states. For me it really helps and also helps keep the gun out of my mouth as I struggle with this disease. It is also medically approved in my state. Please pardon any misspells or poor grammar.

Thanks
M.C.

Paracetamol (tylenol) is unfortunately pretty useless by its own as a painkiller - it won't touch Crohn's pain. Tramadol is probably the least addictive, and thus safest, opioid med there is. You still don't want to be on it long-term, but being in pain all the time is hard to bear. Ironically enough, Tramadol works best in conjunction with paracetamol.

The body pains are probably caused by Remicade, and should stop once you come off it. Basically, I second scifigal's suggestion of seeing a rheumatologist for the joint pain.

Finally, see what your surgical options are. Sometimes a resection ends up being the only thing which brings remission. The Crohn's can come back after surgery, but if you're lucky it will be many years before that happens - decades, if you're ultra-lucky.

Thanks for the responses and advice so quickly.

I have seen a rheumatologist and do not have the signs of RA or any type of arthritis from their examinations. I also test out negative in their "specialized blood testing". My Crohn's is in my bowel and I am told that I am diseased from my jijeunm to my ileum(pardon spelling) and surgery isn't really an option or at least not right now because I am too young and that I have to try to treat the disease. I look forward to the humira and hope it works for both the Crohn's and the pain. (Scifigal-pain is mainly neck and back with occasional muscle pain in my legs. Head aches sometimes feel like my head is cooking). I agree that my pain is just like arthritis of some sort (localized or rheumatoid) but have been told otherwise. I have also read that some have had this type of reaction/side affect with Remicaid but two docs refuse to believe that it's a side affect saying I would have reacted when being infused and its usually obvious with flu like symptoms.

Just Me talking-I'm getting tired of seeing multiple doctors on the regular with little results. I feel that although I am receiving good treatment from all the docs I see, that this always comes down to money and good docs that actually care about you are very hard to find. They always care about your co pay and your insurance but you are just a chart in their cabinet and their basically a sales person smiling wishing you well to make sure you come see them again... It's all business. I'm tired of insurance companies making you jump through hoops to get meds you need because they need approvals because what they won't tell you is that the biological meds are expensive. I'm tired of sounding like a whiner and complainer when test don't prove what I'm feeling, or at least they don't align with a clear diagnosis. I guess I'm just very tired and frustrated and I was never this guy...Sorry for the rant.

I thank everyone for their responses and support and I will discuss the tramadol with my GI doc and see what's next. Keeping my fingers crossed for Humira hoping it is the miracle drug.

Thanks
M.C.

Welcome to the forum MC.

I'm in my early 30's got sick when I was 12 and was diagnosed as UC was always sick,migraines everything nothing the doctors did seemed to work and their plan seemed to give me as many steroids as possible.after 10 years of that I had Toxic Megacolon,had my colon removed and they gave me a j-pouch,well during my surgery they took biopsy and found out I had a real bad case of crohn's.for about a year my health got rapidly worse and then the j-pouch burst from feb.2004 thru March. 2006 I had 7 surgeries,since then I've had a bunch of blockages,fistula's,abscesses,scar tissue,wounds & joint pain.Recently I've been going to a new doctor that's starting to think the crohns is back.

As for the pain I've been put on many painkillers over the years with differing results,over the last 5 or 6 years I haven't taken anything for pain but that can make you go nutty.Hopefully you'll find something that works for you.