Posted 12/17/2018 10:33 AM (GMT -6)
J, I understand how you feel all too well. I was on vacation out of the country & became very ill. They thought it was my appendix & several hours later found a surgeon along with an ultrasound xray machine. He took out my appendix to find they were normal. He was smart enough to open me up lower & found a complete blockage & abscess. My gi said he saved your life. Had I perforated in that hospital I would not be here today. Upon returning home I was seen by 4 other gi's that said, you have had surgery & you no longer have crohns. I went through 2 years of grief before finding a good gi that for was interested & wanted to help. I handed him a copy of my op report that was a page & a half in Spanish, along with a picture drawn on a scrap piece paper in pencil of the surgery. He just shook his head & said you are one tough cookie to have survived that mess. He started from scratch with my history of gi issues that I had for the past 20 years. He feels I had crohns long before the surgery. I have a lengthy history of being on steroids for something different. I had a lot of trips to the hospital over the years but was never checked for crohns.
My purpose of telling you what happened to me is a couple of things. Crohns can be difficult to diagnose for some people. Finding the medication that works is all trial & error. I am not surprised Pentasa did not work, it's an older drug that is rarely prescribed because newer meds are available. Pentasa may work for someone with very mild crohns at best. The fact that you are now on a biologic means your disease is moderate to severe, this is why Pentasas was useless for you. Do not be surprised if your gi says give Remicade 6 months, this is normal. It is not always cut & dried getting a diagnosis. Having a good dr in your corner is a must. Finding a good support forum to talk about things like here is very helpful. My gi suggested I find a good site that had a crohns forum. This is how I found HW, was joining the crohns forum. I knew nothing about crohns, I was in a lot denial too. I came here & read a lot & finally got the nerve up to post & ask questions. I learned more here than my dr could ever tell me. In all honesty, he did not have the time to tell me things I learned here from people that had the disease for years.
When I was on Remicade, I was also on Imuran. The dr said it helps enhance the effects of the Remicade & also helps prevent developing antibodies so quick. It will take time for the Methotrexate to kick in, you just have to remember these meds are not fast acting. We ended up doubling the dose & my infusions were every 4 weeks. There again, it must be tailored to the patient's needs. I did not get immediate relief either, we kept having to work with the dosing schedule. You can ask your dr to test your Remicade levels to see if you are getting enough.
Take things a day at a time, try not to get stressed out, stress is hard on the body. Did you ever ever check out the site CCFA.org? It has great info about this lovely disease.