My name is Kyle. I was diagnosed with UC in July 2012. I posted my story on here a couple weeks ago, title “Joined team UC in July… World Rocked in August.” I still have an amazing wife who has stuck by my side through thick and thin. I work in the school district and am searching for a full time teaching position. I also serve as a Youth Pastor in our local church, I am fully surrendered to Jesus Christ. I love all sports, right now my fantasy football team is undefeated and rightfully named, “Ulcerative Colitis.” I love playing basketball and running. Reading is also a new found favorite as I have had some down time in life lately! See my UC story for details there.
Currently have constant tightness in the gut, BM’s have been solid and roughly 2-3 a day, energy level is up and down with the days, joint soreness especially in the knees, not sure if that’s a side effect of prednisone or inflammation caused by the Colitis Flare, anyone else dealt with that?
First Remicade Infusion:
I had the appointment scheduled at 8 am at the local hospital in the big city just 16 miles away from our apartment. I was still on my prednisone so of course I was already up before my alarm was set to get off at 6:14 am, but this was a different awakeness then mornings prior. It was the morning of my first remicade infusion, now it wasn’t quite the feeling of Christmas, but it was close. I got up as normal and had a normal BM, solid (SCORE!) and a shower. My loving and amazing wife was kind enough to get up with me and drive me to my infusion, I am definitely the morning person in our family, she made me breakfast: scrambled eggs with some hash browns, orange juice (pulp free) and a banana. While she finished getting ready, I prepared a little snack for the morning, took my medications, and waited eagerly to head out the door.
I wanted my wife to be as excited as I was so I told her to take a left at the Starbucks and get herself a coffee to jump start her day, it isn’t every day that you get to get an auto-immune suppressant put into your body! We arrived 15 minutes early and got all checked into the outpatient infusion center. At 8 am I was brought back and pointed to a nice leather reclining chair in a big open room with curtains separating each persons chair. There was a moveable TV and a tray for all my belongings. I got comfortable as the nurse began to get things prepared for me. She found the perfect vein and got the IV needle in as we awaited the arrival of the “REMI.” (That’s my street name for it) She then asked me a series of questions about my health, meds, and life in general. My wife was reading while I sat in anticipation.
The moment finally came when I heard my name and saw the bag of what was referred to as “gold” by the hospital staff. They slowly begin to put the remicade into my body, starting at 10 for 15 minutes, then 20 for 15 minutes, then 100 for 30 minutes, then 200 to finish things out. Each time checking my vitals to make sure things were going smoothly as the Remicade entered into my body.
My lunch arrived shortly before the finishing of the infusion. I had a hamburger, mashed potatoes and peaches, which was included in my visit, and if it’s included you better believe I am taking advantage of it! Especially since my last stay in the hospital I was on clear/full liquids the whole time, Jello and butternut squash were NOT on my list of options today! Praise the Lord!
I finished out my infusion and signed several documents and scheduled my next infusion for 2 weeks out, and then four weeks after that! All and All it was a very nice, relaxing morning, getting what my GI doctor called a “miracle” infused into my body.
Okay, as much as I enjoyed writing you my “Remicade Morning Story,” just wanted to update anyone who is curious on the process. I am feeling very good the night after, I was tired this afternoon but think that may have been from some of the pre-game medications they gave me before the infusion. I am feeling normal, I didn’t go in thinking it would magically fix me, but I am having no side effects and feeling at a normal level. During the infusions I did get a little cold but they had warm blankets that did the trick. Didn’t feel any different than when I have received any other IV treatments in my hospital experiences.
So I am looking at it now as so far, so good! Still experiencing tightness in the stomach but nothing like what I went through 2 months prior, BM’s are down to 2-3 a day with solidness, still on a lower res diet, but increasing the amounts of fresh fruits and veggies. Prednisone is being tapered down by 5 mg’s per day, which is very exciting because the is getting old, and the emotions are ready to be back at a normal swing instead of extremes, and the lovely red bumps on my shoulder blades have outworn their welcome. Also, have been experiencing some joint pain in my knees, feeling like an 80 year old man at times, anyone else in a flare get the knee pain? Could also be something to do with the prednisone, but I am scheduled to be completely off that the week after Thanksgiving, Lord help that day to come sooner than later! But I am thankful for the steroids because I know they are doing their job, but man side effects are LAME! But we are dealing and thankfully my wonderful wife reminds me that I am still handsome : )
I am not sure on the long term outcome of the Remicade, as I said this is the night of my first infusion, but day one has been pretty good! Advice for all you new “Remites” out there : Make sure you stay hydrated the day before, day of , and day after. I have heard headaches can be a factor, but I drank over 100 oz. of water, the day before and day of and didn’t have a headache, other than than, eat something before you go, and hopefully your lucky like me and get treated to a meal during the process. I hope to keep you updated on my adventures with the Remicade, it was a tough decision for my wife and I to make the step, but in order to get my gut back to neutral it was a step we felt the Lord wanted us to take.
Love to hear other stories from you on your Remicade experiences. All you UC’ers out there, You Rock! and know you got a ton of people who are just like you, you are not alone, dealing with this disease requires support from others, you gotta get people around you who know what you are dealing with and going through. Take advantage of the amazing stories and people that use this site! Get on the mailing list, Adam’s emails are always great and encouraging not to mention helpful! I don’t know you all but I love you and am willing to pray for you!
Where I’d like to be in 1 year:
I’d love to be back to neutral in the gut in what I call the “new normal.” I was reminded the other day by a buddy as we spoke about feeling normal that once UC hits in your life getting back to the way things were shouldn’t be our desire. Make it your goal to create a “New Normal” which is a way better than the old normal : )
Currently taking 2 lialda pills in the morning, 35 mg of predisone (20 morning and 15 at night) tapering off at 5 mg per week, multivitamin, and a probiotic.
Just started Remicade infusion today. Next one is set 2 weeks out, then 4 weeks, and then the goal is every 8 weeks from there. Also planning to bring in SCD when gut gives a green light!
written by Kyle
submitted in the colitis venting area