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.