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Bring on Remicade Round #4

Kyle with his wife

Kyle (aka the IBD Rap Ambassador of the world!!!)
at least in my opinion–((Adam)

Intro From Kyle (post #5!):

Hello one again all my UC friends. I have missed you all and it is nice to be back : ) Hey everyone it is Kyle coming straight for the Pacific Northwest, the WA the be exact. I am a 28 year old teacher and youth pastor. I am married to an amazing God serving woman who puts up with all the insanity this disease brings. I am a sold out servant of Jesus Christ.

Something Interesting you may not know…

Interesting about me that I haven’t shared? Have I told you all that I am left handed? I eat the peel of oranges, my favorite food is meatloaf, I am a big fan of the NBA Dunk Contest, I play ping pong with both hands, and I have never seen the movie star wars.

Symptoms

Symptoms what are those? HAHAHA! Only kidding UC flare I finally feel is getting under control, PRAISE THE LORD! Steal dealing with tightness of the gut every now and again, BM’S are down to 1-2 a day, solid and formed, definitely doing so much better than before. I am sure you all will agree that UC does suck, but it has made me aware of all the things I have to be thankful for.

Remicade Round 4

LET’S GET READY TO REMICADE!!!!!

(BEEP BEEP BEEP) The alarm goes off, I am slow to gain my realization that today is not a normal work day, no my friends, today is a Remicade Day and within the next 3 hours I will have the medicine known on the streets as “Remi” pumping into my veins. I make sure to get bundled up nice and warm because it’s sitting in the teens outside the door. I put on my jacket, pull my beanie tight on my head, put on my gloves, grab my wife and out the door we go!

We arrive right on time and get right back to the infusion center at the hospital, it has now been 2 months since my last infusion, so I have to get caught up with the nurses on how their holidays went and what they did to bring in the New Year. Then it comes in and gets sat on the counter, the bag of the liquid gold, REMICADE! The nurse gets my IV site ready, loads the bag up, and begins the slow start of the infusion.

Lunch comes roughly an hour and a half into the infusion. I couldn’t help myself I had to go with the chicken fajitas again; they were just so dang tasty last time. I got it with onions and bell peppers. On the side I had a pear and the usual cup of orange juice. My wife went with a baked potato to go along with her coffee.

2 hours later, nearly to the second, and I am infused up and ready to go! I say my goodbyes, schedule my next appointment and away we go to run a few errands in town and then back home for me to take a quick nap and head into work for the last part of the day.

How’s Remicade going with me?

The Remicade infusions seem to be doing exactly what they need to do. I do feel pretty tired the day of and the day after, but by the evening of the day after I am pretty much back at full steam. I did have a small headache shortly after my infusion but I came home and took about an hour nap, kept myself hydrated and it was gone by that evening. Got a good night sleep that night and was good to go that next morning, like a said, just felt a little more tired than normal. So that’s infusion # 4!

Everything Else?

I am so blessed right now, The Lord is continuing to do a mighty work, and things are going so awesome. BM’s are solid and happening 1-2 times a day. Pretty Amazing There! I am currently back to work full time. I made it my new year’s resolution to begin working out again, so I’ve been trying to work out three days a week including an Abs workout, trying to get that six-pack back : ) My goal is to begin to try and play hoops again one day a week, have taken a couple shots, and would you believe it my first three point attempt was nothing but net, did feel like I was throwing a medicine ball, but hey it went in! I couldn’t believe it!

You’ll be happy to known that the” Remicade Renegades” (My fantasy football team name) were the champions for the 2nd straight season. Has my UC created a dynasty in the fantasy football world? : )
Medicine Wise?

I actually just finished my final day of Prednisone yesterday, Praise the Lord! I am very thankful for the work it did on the inflammation in my gut, but that stuff is a beat. My forehead is finally starting to look adult again rather than a 13 year old middle schooler going through puberty, but hey I fit right in at my work!

The goal is to just be solely on Remicade and that is where I am at right now. I am taking a multivitamin, D3, and a probiotic in the morning and evening. I am praying that this is a place I can stay for a long time. I am slowly beginning to work in the SC diet, but it is definitely something I am learning as I go.

Life?

My wife and I feel as though we are now able to begin the “new” normal. We are very excited about this new stage of life we are setting up for. It has definitely been a growing experience for both of us, but I have learned how lucky I am to have such an amazing support at my side. UC is now a part of us and it’s just about learning how to handle and balance the ups and downs that it brings, and seeking out ways to grow in every situation you face.

I feel very blessed to be a part of this community that Ihaveuc.com has created and very thankful for all of my TEAM IBD MEMBERS!

God Bless!

Colitis Medications:

Medication: I am currently prednisone free! YES YES YES (fist pump) Finally my face is beginning to take shape again! Right now I am only on the Remicade treatments and from what my GI has said that is his goal for me!

I am taking a probiotic twice a day, multivitamin, and a D3 vitamin.

written by Kyle





4 Responses to “Bring on Remicade Round #4”

  1. AngelaFebruary 24, 2013 at 7:48 am #

    Hey Kyle!

    I’m so glad to hear Remicade is working for you and you got off prednisone! I’m a Remicade veteran, 9 years of it and couldn’t be happier about going on it (weird to call myself a veteran since I’m only 24)! The moment you get off prednisone is definitely one of the best days. I got off my 3 year continuous stint of prednisone my first year of remicade and have never looked back. :) I occasionally get headaches as well but I attribute mine to the IV benadryl rather than the remicade itself, also same with the tiredness.

    Just some quick tips, add vit. B12 to you regiment and make sure you avoid NSAID pain relievers like advil, aleve, and aspirin as they can all can irritate your intestines, only take tylenol if you need a pain med.

    Wishing you all the best, and a prayer that Remicade will keep working great for you!

    Angela

  2. Jenny Mom
    JennyFebruary 24, 2013 at 1:41 pm #

    Hey Kyle! I just read this post, and of course I had to go back and catch up on all your past posts so that I knew your whole story. I am so thankful for how the Lord has protected you and stregnthened your faith through the whole process!
    I used to teach 6th grade Language Arts, and my husband and I help in the youth group at our church, too. Now I’m a mommy. :) It takes so much energy to help with middle school kids!
    I just wanted to let you know about a couple of books that have helped me, since you are a Christian too. One is “Trusting God When Life Hurts” by Jerry Bridges. It is such a good book about God’s sovereignty and His goodness and wisdom. The other one is a Puritan Paperback called “The Rare Jewel of Christian Contentment.” It’s HEAVY because it is in the old puritan English, but since you teach L.A. I figure you’re up for the challenge. Both of those have been huge as I dealt with all these symptoms (mostly bloody, frequent BM’s) before I got a diagnosis. I finally got my UC diagnosis 5 days ago, so I’m on the Lialdra, of course!
    I will be praying for you, that the Lord uses the Remicade to keep you well, and that you can keep getting more and more active! Pray for me, that remission happens, too! My husband and I would really like to try for a second baby if I can get out of this flare. :)
    Thanks for sharing so much encouragement on this site!

  3. bevFebruary 24, 2013 at 4:23 pm #

    Welcome back Kyle!

    So happy and positive…as per!!

    Very great news!

    Continued success, my friend.

    Bev
    :)

  4. KimberlyHI
    KimberlyFebruary 25, 2013 at 1:17 am #

    Kyle, I just always love to read your posts, they are always so positive and inspirational with a hint of comedy and…you just seem like a great guy all together! But ummm…no star wars? Like, you have not seen any of the star wars movies? I must inquire on this one…:)

    So, I am on a simular boat as you, I just went in for my fifth infusion, I started Remicade in September after a really bad flare. I finally tapered off prednizone in November which was GREAT. I am now slowly reducing my dose of Imuran as well, right now I am on remicade and imuran but the goal is to be on remicade alone. I’d say about 95% of the time I feel great. I every once in a while may get a bit of a tummy upset about something I ate maybe, but I actually for the most part feel like a normal person, and heck even normal people get tummy upsets right?
    Soooo happy to read that you are feeling better! It helps very much to have a supportive family. My poor husband has been by my side through all this yuck, and it’s really hard to talk to someone about this stuff but he is really supportive and great about it. God has blessed us!

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