Crohns pain, GI says everything fine??

Hi everyone. It has been a long time since I have posted here but I am miserable and need some advice. I have Crohns and have had it since I was 23. I am now 44 and am experiencing pain for the last two years solid. In the past during flares, I did not have pain and was in remission for over 10 years. I knew I was flaring because of blood. I have pain in my left abdomen, left back, up my bottom (colon) and down my left thigh. The pain is constant and severe. I went to ER and they said my bloodwork looked ok and cat scan looked ok. I told the ER doc I was in painand he said , well you have crohns and gave me some dilaudid and out the door I went. I am bleeding which GI is not sure if its hemmys or crohns (I guess) as I have both. I also have passed a kidney stone during all of this and my pain doc dumped me because I said I didnt want to take Nucynta because it is giing me diarrhea. They were awful. Am I really feeling crohns pain with my blood work ok? Can someone help me and give me some insight. Also where in the balto area can I find a pain mgmt doc that will prescribe for crohns? Any helpwould be appreciated.

First off, sorry you are having so much pain.  I really hate it when Doc's don't take us seriously and just push us out the door.  I say, keep looking for a doctor that will listen to you and treat you with respect.  It might take a while but there are some out there.

Now, I may be a little out of touch, but looking at your med list I see you are taking Lialda 4x a day and with cimzia.  Isn't Lialda made so that you only need one pill once a day.  I remember taking it and it killed my stomach.  I was in so much pain and I could tell where in my instestines the pill was moving.  It was weird but some of the worse pain I have ever felt.  I also am wondering if you need it with Cimzia.  I am curious what other people will have to say.

Feel better and remember....it will get better.

Sunshine, I hear you! It sounds like you've had a hard couple of years.

Are you freqently getting kidney stones? I think that having active Crohn's increases your risk for stones, but I don't know. I'll bet you can put up a question here and get good feedback. That would be some evidence for your DR that your disease is active.

The left side pain could have been from the stone, correct? And the hip, back and leg pain sounds like a nerve issue, not a bowel problem. Are you aware of any changes to your SI joint? If you are developing arthritis in this joint (not rare for a Crohn's patient) your piriformis muscle could be spasming, leading to the back, hip and leg pain because the piriformis muscle happens to wrap around the sciatic nerve in your butt.

Finally, maybe it's time for a scope. The scans are pretty good, but nothing beats a visual partnered with a biopsy.

Oh and I did not mention the fact that I have a mass on my adrenal gland they said is growing and they want me to go to an oncologic surgeon to get checked out. I have that appt on the 26th