Kyle (aka the IBD Rap Ambassador of the world!!!)
at least in my opinion–((Adam)
What up UC world? The Remicade Warrior coming at you from the Evergreen State, Washington!
Hope all your guts are treating you super and those BM’s are happening in the low #’s for you all!
Thought I’d start out with a huge praise. UC put me in the hospital for 29 days in 2012 and when I was released I made it a goal to compete in the 12K race that happens each year in my town. 8 months to the day I was released from the Hospital, God restored my body to a place to compete in the race. My wife and I logged 12 minute miles and had an amazing time. I have ran it in years prior, but through all this I have learned how thankful we need to be for the steps the Lord allows us to take, so I did the race with a smile on my face!
Well, it has been a handful of months since the last time that I updated you on the ‘Remi’ Life : ) Things have been going very well thanks to Remicade, my symptoms have been very low key and the gut has been feeling more like it’s normal self again. But every match has it’s final bell and it looks like Remicade and I will be parting ways.
Here’s why:
During my last infusion, much like every other infusion, I showed up 15 minutes early got my pre-game meds in me and awaited for the “golden” bag to arrive. As I waited I ordered myself a hamburger for lunch and broke out the Kindle for a little light reading. The infusion started, like always, and everything started fine, they bumped me up in the IV, then bumped me up again, but all of a sudden my arm started a slight itch. I scratched, then scratched again and again, finally I looked down and noticed I had what appeared to be a welt on my arm. I thought, “maybe I got bit by a spider last night?” That’s when my stomach and chest started to itch as well and when I lifted up my shirt I had 4-5 matching welts on my front side.
“uhhhhhh Nurse??????”
She came in and immediately stopped the infusion and called my GI. I was told they were hives and it seemed I was having some sort of reaction to the Remicade. They put some IV steroid in me (not the prednisone, thankfully!) and some IV Benedyrll to reduce the reaction. The hives reduced and the nurse finished out my infusion with no more hive issues.
Then came the chat with my GI. Apparently your body can develop anit-bodies to the Remicade and that is what he believes has happened to me. The problem with this reaction is each time they can get a little more severe and that is not a road him or I are wanting to take the risk of walking down. So he has recommended my trying out ‘Humira’ which is now FDA approved for UC. They say it’s an easier process to roll with then Remicade. Just because you’re carving out a whole day for Remicade while Humira is an injection, you do yourself, 2 times a month.
My UC peeps I gotta ask you:
I know all the Medical Deets on Humira but what have your experiences been on this medication? Please include both positive and negative experiences for you all. As for new nicknames, I was thinking the “Humira Homeboy?” Help me out here UC family.
I know SC is really for me and I have been slowly putting it into process in my life. It’s a learning process for sure. The wife and I are getting there and are planning to jump in feet first this summer.
Symptoms:
I have been experiencing the tightness in my left side, been waking me up in the mornings, thanks GUT DISEASE for the 5 am wake up call! : ) That is really been my only UC trait currently. BM’s have been solid and formed 1-2 times on a daily.
God is Good!
Kyle
1 Corinthians 1:9
My name is Kyle. I am from the Evergreen State of Washington. I joined team UC in July of 2012. I am currently working in a school district seeking a full time teaching position. I also serve as a youth pastor in my local church and am sold out servant of Jesus Christ. I try to stay very active, current days it looks different, but I love all sports. I love playing basketball and running. I have an amazing wife, who I have been married to just over a year now, and let me tell you I married up! I would be willing to debate anyone that I got the cream of the crop : )
HI Kyle, Sharon here. I have been on Humira for about a year. I have had UC for over 20 years and used to have a great relationship with Asacol that came to a screeching halt when I switched to Lialda. Apparently God didn’t supply me with the enzymes to break down the time release modifier. This led to an amazing near death experience in the hospital that gave me great peace and acceptance of my disease but required a new plan of action. After bawling my eyes out in my GIs office about having 4 kids and not wanting to be sick all the time because I was taking immunosuppressants, he gently told me that I was already sick all the time, already immunosuppressed, and Prednisone is like a nuclear attack on the body but Humira is like a laser focused attack aimed at the disease. Are there super scary side effects that sometimes happen? yeah. Am I better off in remission than in my full on flare? yeah. Well, I was on lots of Prednisone so I don’t know if Humira put me in remission or if the Pred finally kicked in. I don’t know if the HUmira has kept me in remission or if I would have had an easy year without it. I do know that I haven’t had any side effects. I did get the flu shortly after starting it but so did my family. Guess what…we all agreed that the flu sucked but we all got well about the same time. Otherwise, I was symptom free until about 3 months ago when my pharmacy screwed up 3 delivery dates due to computer error. I was a week late taking my shot and ended up in a flare. It wasn’t a bad flare and we did some booster shots and Probiotics (VSL#3DS) and got through without Prednisone. I am not 100% but pretty darn close.
As for the diet, it’s tough with a big family and up until now, I haven’t felt the stress of what to eat has been one more thing that I can take on. I am trying to end all aspartame in my house, trying to eat cleaner with fewer unpronouncable ingredients and drinking almond milk instead of cows milk. I try to make sure I am getting nutrients and not just fillers. I love pumpkin pancakes, butternut squash soup, roasted root veggies, and other things I avoided for years when I flared but then found out these things all help heal my gut. Who knew?
BTW, since you posted a scripture reference, check out Matthew 6:25 through the end of the chapter. Love that God doesn’t want me to worry about what I should eat but give Him all my worry. “CAN ANY ONE OF YOU BY WORRYING ADD A SINGLE HOUR TO YOUR LIFE?” (Didn’t realize I had caps locked but I think I will leave it that way :)
Sharon
hey kyle. the same thing happened at my last ferrlecit infusion. I had 14 infusions with no problem at all and my 15th, I had the worst hives outbreak I’ve ever had. they lasted about 2 weeks since I did the whole infusion and it was in my bloodstream. at the time, I considered them worse than UC because I could not function at all- just itching day and night. Benadryl made me too tired to take all the time so I was just in pure hell. i’m sure if I had tried it again, something worse would have happened.
I hope you can find something else that helps you. remicade worked for me for a little while and then I tried humira. I fainted after the 3rd shot due to the pain- I’ve never had pain like this before and my body went limp- breathing was difficult and I went very cold. i knew in my heart that I would NEVER be able to keep taking these shots after the loading dose due to the horrendous pain i felt. humira gave me c diff within days of taking it. I still haven’t been able to get rid of the c diff. so I consider humira as the gift that keeps on giving.
Well Kyle…sorry to hear of your unfortunately expected news, but when 1 door closes….
I think you have a great opportunity to try SCD and other natural remedies-just don’t overdo them and keep track of everything…a journal is a must and so is a good probiotic! And/or the homemade yogurt…yes, it has to be the homemade one. If you already don’t have the Breaking the Vicious Cycle book..it too is a must.
Please read up on the gut bacteria and just as important, read all we wrote on the site about humira..the reviews and the thread about when it was approved. You have it in your back pocket if you need it or one of the others. Just know the side effects before taking the leap. As you may recall, I was on remicade for 3 years and gave up my gallbladder,but had already modified my diet. I think we rely soly on meds to fix our problems and this is obviously not the case as your finding out. Food and natural remedies need to heal our bodies from the inside out. The proverbial…you are what you eat! :-)
By the way…a steroid is a steroid. I had the solumedrol every time as a pre Med before my infusions…I was on a very high dose every 4 weeks for the 3 years, I never got past my maintenance dose before having my Delayed allergic reaction..which my Dr. Didn’t want to blame on the Med. And I tried to go Med free, but ended up on Humira after having a very serious flare…was on humira for 6 months, allergic the whole time, but it did stop the bleed. Like Joanna, I have said it is the gift that keeps giving…it has quite a long half life and I have side effects still late will last forevever, as i do from all the meds.
Good luck Kyle. UC has a lot to teach…use this opportunity. Read about all we are doing to stay off meds.
Be well, Shelly
Sorry about typos, my tablet doesn’t always let me correct and we know how well self correct works!
And by the way..I am Med free for going on 2 years( fingers, toes crossed) battled 2 major flares including iritis. Hoping to write another story.
Hang in there. :-)
Hello everyone, I am currently taking lialda and the max dose of aziothioprene.After my last blood test my doctor says I am on the high end of my meds and the low end of my blood count. He recommends I start Remicade. I am terrified of side effects and the fact he said once you start it you can’t stop. Any suggestions or encouragement for me. Just don’t know what to do.
I had a bad reaction to the aziothioprene after I was first diagnosed in Sept 2012. Turned out it was shutting down my pancreas. After a week in the hospital I switched to Remicade. It didn’t do much at first because I had apparently picked up a c-diff infection in the hospital. After a couple months on vancomycin to kill the cdiff the remicade really started to work well. I feel pretty normal, but after eating junk or drinking beer I will have BM issues for a day or two. Have been on the Remicade for about a year now with minimal side effects. My doc says there are some new drugs in the pipeline that, once approved, will be even better. Good luck and hang in there!