Wednesday, May 25, 2016

Crohn's Update: May 25

Yesterday we got to meet with Dr. Tekola. Up to this point my insurance has only allowed me to see PA's or NP's in the office but Dr. Tekola is so nice and felt like I needed to see a doctor more often and so she has started seeing me. I'm sure she doesn't get paid for it or gets paid quite a bit less because she told us not to worry about the fees. She is such a nice person, I feel so blessed that we found her and have her on our team.

After Friday night's conversation with her I was nervous she was going to tell me it was time to have surgery, but that wasn't the case. We discussed how the blood test is not a definitive diagnostic tool for Crohn's Disease. Although I tested positive for Crohn's and have a fistula, up to this point my small bowel has not been effected by the disease (or so we think). Usually Crohn's will effect the entire bowel and esophagus. So, although they have technically diagnosed me with Crohn's Disease she isn't 100% convinced.

So, our new plan is:
-Double the Imuran. (This is one of the immuno-suppresants I take). The hope is that we can decrease the inflammation faster by increasing the Imuran.
-Get an MRE. This is a special type of MRI for the the small bowel. If it comes back showing inflammation or blockages then we will for sure know it is Crohn's Disease, if it comes back clear then they will have me swallow a little camera pill that will take pictures of the insides of my intestines so we can really see what is going on. If that one comes back clear too then it is likely to just be Ulcerative Colitis.
-Continue to decrease steroids. (YAY!)
-Remicade infusions every 6 weeks instead of every 8. My doctor feels like she has had a lot of success with another drug infusion (I can't remember the name of it right now) and she eventually wants to switch me to that. That one is slower acting though so we couldn't start with it.
-Liquid diet for 1-2 weeks to help decrease inflammation. My stomach has been looking like I'm 9 months pregnant again so to help with all of the irritation I need to go back to the liquid diet. She is allowing soups with noodles and soft veggies though, so thats a plus! The liquid diet is so hard to follow because I get so hungry on it.

(I know this is referring to alcohol- but I think it fits for a liquid diet too!) ;)

So, here's hoping I survive the next week or two on liquids. If anyone has any awesome soup recipes that involve noodles and soft veggies (no meat), please send them my way! My MRE is scheduled for next Friday and I will update again as soon as we get the results back.

We are finally moved in to our apartment, the last box was officially unpacked yesterday! We love it here so far and I'm excited for the summer to start. James and Charlotte are both doing well. James has loved playing with all of the different people in our ward and getting out everyday. I am so grateful for all of the people who have volunteered to watch him and take him out. My energy is still very low and I still have quite a bit of pain (especially in the mornings). Rob is doing well and should finish his last final on Friday- hallelujah! That means we can mark off two major stressors- moving and school. Now if only we can get on top of my health, we should be back to normal!

We are looking forward to my parents visiting next week and blessing baby Charlotte on June 5. It feels good to make some plans and think about something normal!


2 comments:

  1. That is hopeful news! You are always in my prayers. I made a roasted carrot soup a couple months ago and it was really tasty. It had yogurt in it and I think dairy is difficult but there are recipes that don't have dairy.

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  2. Hurrah for compassionate doctors! This is a soup recipe that my sister used to make quite a bit, and it is one of my favorites.

    http://allrecipes.com/recipe/77981/butternut-squash-soup-ii/

    If you saute some mushrooms, it takes it "all the way to 11" (read amazing!):

    http://cookingchatfood.com/butternut-squash-soup-with-sage-and-sauteed-mushrooms-for-sundaysupper/

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