Jan 10, 2015

    Wow it has been a long time since I posted on here. I decided instead of putting little updates on Facebook for the world to see, I would use this blog for what we created it for and put more detailed updates on here. :) 
    I will start from the beginning, I started noticing symptoms in early December but thought it was due to the narrowing in my duodenum and so I got it stretched and that relieved the symptoms some. Then it was time for my Drug Study infusion and so I blamed my symptoms on that; but then a week later when I should have been starting to feel better, I wasn't. Rachel, Jason and Andrew were in town for Christmas and so I pushed through because I wanted to enjoy the time with everyone together, but I was declining quickly.  I was having really bad pain after eating, which makes me not want to eat, and so losing weight (as of right now I have lost 16lbs.) I have also been having fevers, nausea, no energy etc. So last Friday (1-2-15) I emailed my GI doctor about all my symptoms, she was not in the office so I talked to the on-call GI doc and he said I should start steroids. I do not want to do steroids for multiple reasons: first is that I get horrible migraines after stopping them, second they don't really help me - they are more of a bandaid than a fix, and third steroids will get me kicked out of drug study. Vedoluzimaub/Entivio (Drug Study drug) has been FDA approved now so Kaiser can prescribe it but the FDA approved it to be given every 8 weeks and I have been getting it every 4 weeks so my GI doctor would have to write it off label for me. Steroids was really all the on-call GI was willing to do so we scheduled an appt to see my GI for the following Wednesday (1-7-15). Then on Sunday(1-4-15) I had to go to Urgent Care and get a couple liters of fluids because I was dehydrated and just needed to make it to Wednesday when I could see my doctor. The fluids helped and I made it to Wednesday. I talked to my GI and she understands why I don't want to do steroids and I appreciate that she isn't pushing me to take them. She wants to get an MRI of my abdomen to see if maybe I have another stricture somewhere lower in my small intestine because if that is the problem then we could just fix that without having to start another medication that would kick me out of the study.  My MRI is scheduled for this Monday(1-12-15) at 6am. I do have to drink a liquid contrast before the MRI and I don't do well with those so I would love prayer that I am able to drink it and not get sick from it. Once we get the results from the MRI we will make a plan on what to do next; whether that is to fix a stricture or start something like Methotrexate to get through this flare. So right now it is a waiting game, which is tough for me. I am on a Leave of Absence from work because I don't have the energy to work, and I am staying at my parents because when you don't feel good its nice to have your mom around. I am just ready to move forward with whatever plan we are going to so I can feel like we are moving towards getting me back healthy again.  I will try and post an update after I talk to my GI about the results from my MRI and what we are going to do next.