confused about back pain

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Veteran Member

Date Joined Sep 2006
Total Posts : 845
   Posted 3/21/2008 4:42 PM (GMT -7)   
I am so confused and frustrated that I honestly don't know what to do, so I will vent and plea for a advice hear.  For the past 2 - 3 months, I have been having abdominal pain that will come for a day or two and then leave.  Each time that it happens, it gets more intense and last longer.  I have always had the lower right pain associated with my Crohn's, but this is different.  This pain generally starts out in the middle of the abdomen and then goes all the way through my back and focused on both sides right under the ribcage.  It feels like I have someone poking me with a stick or something sharp and is a constant pain.  The first time it happened, I was tested for kidney stones and had a mrcp.  Everything turned out normal on the test, except that my liver was elevated.  I just kind of dealt with the pain, but then it began waking me up in the middle of the night along with a racing heart and my lungs felt like there was a ton of pressure on them.(almost like a bad cold without any phlem)  This really scared me and my wife, because I felt like I was having a heart attack.  I am only 28 years old and was really into fitness and sports before I was diagnosed, so a heart attack is probably not likely.  When I wasn't having the pain, I started getting the feeling like I was always going to through up, but rarely did. 
I brought this to the attention of my G.I.(about the heart and shortness of breath) and he said that I should really have that checked out. What did he think that I was telling him for?  So he order some more blood work that came back with elevated liver enzymes and pancreatic levels.  He had me do a small bowel series, a C.T. scan and on monday, a endoscopic ultrasound.  5 days before the endoscopic ultrasound, I began to really have a lot of pain and called my G.I. who told me to take some Tylenol and wait until after the procedure.  I went and had the procedure and afterwards was in a huge amount of pain.  The endscopic clinic kept me for nearly 8 hours to get my pain under control.  The doctor who performed the procedure asked what I used for my Crohn's pain and could not believe that I only had tylenol.  He prescribed me loritab 10 and told me that my G.I. should be prescribing me something a lot stronger than tylenol. He also said that the pancreas and commonbile duct looked normal, but there was a lot of gastritis.  I waited to hear back from my G.I. until finally today I gave them a call.(the test was done 5 days ago)  I told my doctor that the pain has not stopped hurting and that even the loritab 10 was barely making it tolerable.  His response was that he was going to take me off of my Remicade that I had been recieving at the max dose every month for the past 3 years, and off of the methotrexate injections.  He wanted to see what would happen.
Sorry this is so long, but I am so confused.  He said that he is not seeing any active disease from my scopes, but all of the blood work and promethius tests are showing active crohn's.  I was diagnosed 3 years ago through a capsule endoscopy and hospitalized for 3 weeks.  All I would like is some relief.  He wants me to contact him in a few weeks after being off of the medications.  What am I supposed to do in the meantime?  The pain is killing me and when I run out of pain medication, I do not know what I am going to do. I scheduled an appointment with my primary care on tuesday and am going to ask for his help.  I am so sick of suffering and I want to live my life again. It has been 3 years since I had to go on longterm disability through my employer and stop my schooling.  All I am asking is for enough pain relief for me to leave the house and work again.  Thanks for letting rant, I am about to blow up. 

Regular Member

Date Joined Sep 2007
Total Posts : 246
   Posted 3/22/2008 2:49 AM (GMT -7)   
the only back pain i got assosicated with my crohns was wen i had a full blockage just after my resection,i couldnt even stand up straight,once they sorted the blockage the pain went.Im sorry i cant b more of an assistantace
dx 17 aug 2007
20 yrs old
23 dec 2007 resection/temp illeostomy 14 feb 2008 temp illeostomy reversed  100mg azamun

Veteran Member

Date Joined Jul 2003
Total Posts : 1256
   Posted 3/22/2008 5:08 AM (GMT -7)   
So did they check your gallbladder ?
hope you are better soon.
Confucius say : He who goes to bed with itchy butt wakes up with stinky finger.

Words of wisdom: Never trust a fart

:) Sugarmarie A.K.A. Poopy Pants :)

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 3/22/2008 10:38 AM (GMT -7)   
Hi I can understand the back pain thing I have been getting some these last few days and bending over is not so good. I did have a lot of pain when I was on the Remicade but it was in my legs.. Not sure what is causing the pain for me I am weaning off the prednisone and on Imuran .Hoping it will go away .I also think the DR. might be thinking it's your meds causing problems for you. Hoping your general practioner can help you . I find it hard coping too when I don't know what is causing a problem.Keep in touch and let us know how things are going. lol gail

Veteran Member

Date Joined Feb 2007
Total Posts : 734
   Posted 3/22/2008 3:35 PM (GMT -7)   
You have a right to be frustrated. It's hard to be in constant pain. No fun. One thing I'm learning as I continue on this journey with this disease is if I'm not feeling like I'm being listened to, then I will find someone who will listen. I am having a bout as well and have only been on Tylenol in the past after a trip to Urgent Care my husband demanded I recieve something stronger for the pain. It is comforting to have some relief. It it gets to bad go to the ER, you have a right to comfort. It sounds like lack of communication which can be frustrating. Take care of yourself. I too take Remicade, is he going to put you back on???
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