Hello everyone,
I guess I'll start by giving my history. I'm currently 25 years old and around 3 - 4 years ago I suddenly experienced a lot of pain in my stomach. It was a new type of pain that would hurt even if I took a breathe, the only time I could relax was laying down in a certain position. I went to the emergency room and they did a ct-scan and were unable to find anything. This happened again around 3 months later. Once again I went to the emergency room and once again they found nothing. I put it in the back of my mind because the pain would only last for a few days before going away.
As the years went by the flare ups became more frequent, gradually going from 3 months in between to 2 months and so on, I no longer went to the hospital for the pain after the second time because I was tired of them putting me in a ct-scan just to find nothing. Eventually it got to happening at least once a month before my primary physician sent me to a GI. They did a Breath-Test and found some bacteria in my stomach and put me on some anti-biotics and told me to start taking pro-biotics everyday. The pain went away and I felt some relief for a few months. I thought it was over but the pain eventually came back, a new doctor decided to take me off the pro-biotics saying it was doing more harm then good at this point and had me do a colonoscopy where he find some very small white ulcers in a very small portion of my lower intestines. Everything else was fine though and it was assumed the ulcers were from the prep.
The flares up would continue until it got to the point where they would occur every other week. Another doctor told me to take dairy out of my diet, and when I had done that the flare ups of pain became less frequent. Once again, after a few months it go worse so my primary GI ordered another colonoscopy and endoscopy with a different prep and found those same ulcers. After that he told me that there was a chance I had Crohn's even though I had no other symptoms beside the pain. He order a IBD Serology 7 test with Prometheus Labs to be sent to LA, but unfortunately after I did the test the insurance denied it on account of it being too expensive and "unnecessary". I also had to do a few other blood tests, and with the results from those and the colonoscopy, my GI diagnosed me with ileitis in final section of my small intestines and prescribed me Pentasa with the warning that while not 100% this may be Crohn's Disease.
Fast forward 2 months and I've only had one flare up which I consider mild compared to my previous bouts of pain, and I believe this to have been brought on by the Lactose-Free Milk the GI suggested I try while off of dairy.
To my shock, when I went in for another visit this morning my GI said he spoke with another Pathologist in order to get his opinion and when comparing both colonoscopy results, they believe I have Crohn's Disease with 99% certainty. Now he wants to put me on Humira which scares the daylights out of my because of the known side-effects even though Pentasa is working. When I brought Pentasa up he said it was just another indication that I have Crohn's because it's been working so well. At this point I have no idea what to do or think, and reading up on the possible side effects of Humira specifically the chance of Lymphoma no matter how low it may be terrifies me. He currently wants me to do the standard blood tests and vaccines before getting my started on Humira, but I was hoping to somehow convince my insurance to allow me to take the IBD Serology 7 test and make sure I'm being treated for something I have.
I don't experience weight loss, diarrhea, vomiting, or blood, only pain. The pain starts gradually until it reaches a peak over the next 24 hours, I then break out into a short fever before the pain gradually goes away over the next 48 hours.
Sorry for the long post, but I'd appreciate any advice about what to do at this point... Pentasa seems to be working, but would it work in the long run and stop Crohn's from reaching the point of surgery? Would Humira reduce the chances of Crohn's going beyond this point? What are the chances that this is just ileitis and not Crohn's? Any help would be appreciated.
I guess I'll start by giving my history. I'm currently 25 years old and around 3 - 4 years ago I suddenly experienced a lot of pain in my stomach. It was a new type of pain that would hurt even if I took a breathe, the only time I could relax was laying down in a certain position. I went to the emergency room and they did a ct-scan and were unable to find anything. This happened again around 3 months later. Once again I went to the emergency room and once again they found nothing. I put it in the back of my mind because the pain would only last for a few days before going away.
As the years went by the flare ups became more frequent, gradually going from 3 months in between to 2 months and so on, I no longer went to the hospital for the pain after the second time because I was tired of them putting me in a ct-scan just to find nothing. Eventually it got to happening at least once a month before my primary physician sent me to a GI. They did a Breath-Test and found some bacteria in my stomach and put me on some anti-biotics and told me to start taking pro-biotics everyday. The pain went away and I felt some relief for a few months. I thought it was over but the pain eventually came back, a new doctor decided to take me off the pro-biotics saying it was doing more harm then good at this point and had me do a colonoscopy where he find some very small white ulcers in a very small portion of my lower intestines. Everything else was fine though and it was assumed the ulcers were from the prep.
The flares up would continue until it got to the point where they would occur every other week. Another doctor told me to take dairy out of my diet, and when I had done that the flare ups of pain became less frequent. Once again, after a few months it go worse so my primary GI ordered another colonoscopy and endoscopy with a different prep and found those same ulcers. After that he told me that there was a chance I had Crohn's even though I had no other symptoms beside the pain. He order a IBD Serology 7 test with Prometheus Labs to be sent to LA, but unfortunately after I did the test the insurance denied it on account of it being too expensive and "unnecessary". I also had to do a few other blood tests, and with the results from those and the colonoscopy, my GI diagnosed me with ileitis in final section of my small intestines and prescribed me Pentasa with the warning that while not 100% this may be Crohn's Disease.
Fast forward 2 months and I've only had one flare up which I consider mild compared to my previous bouts of pain, and I believe this to have been brought on by the Lactose-Free Milk the GI suggested I try while off of dairy.
To my shock, when I went in for another visit this morning my GI said he spoke with another Pathologist in order to get his opinion and when comparing both colonoscopy results, they believe I have Crohn's Disease with 99% certainty. Now he wants to put me on Humira which scares the daylights out of my because of the known side-effects even though Pentasa is working. When I brought Pentasa up he said it was just another indication that I have Crohn's because it's been working so well. At this point I have no idea what to do or think, and reading up on the possible side effects of Humira specifically the chance of Lymphoma no matter how low it may be terrifies me. He currently wants me to do the standard blood tests and vaccines before getting my started on Humira, but I was hoping to somehow convince my insurance to allow me to take the IBD Serology 7 test and make sure I'm being treated for something I have.
I don't experience weight loss, diarrhea, vomiting, or blood, only pain. The pain starts gradually until it reaches a peak over the next 24 hours, I then break out into a short fever before the pain gradually goes away over the next 48 hours.
Sorry for the long post, but I'd appreciate any advice about what to do at this point... Pentasa seems to be working, but would it work in the long run and stop Crohn's from reaching the point of surgery? Would Humira reduce the chances of Crohn's going beyond this point? What are the chances that this is just ileitis and not Crohn's? Any help would be appreciated.
