Monday was my second Remicade infusion. In the past 2 ½ weeks it is mind boggling just how much BETTER life has gotten.
Let me back up a little with a little time line though, and brace yourself this is lengthy:
Symptoms began as far as I can recollect back in 2012. That also coincides with when I got more “serious” with distance running. I was racing a lot (at one point I think I ran about 6 half marathons over 8 weeks). And when I went to the doctor concerned I was told it was running induced and dismissed. I figured fair enough I have a “sensitive” stomach and running was intensifying things - everyone talks about that it seemed logical.
I tweaked food choices. I got pretty thin the summer of 2012 because I was basically scared of food.
Continued to struggle though marathon training cycles. I would have a few months of nothing more than “urges” on runs then followed by a few months of really really shitty can’t even attempt to run outside type training. I think I trained the majority of my cycle leading up to my goal marathon fall 2013 on the treadmill (which would probably prove my demise and DNF in that marathon).
I tapered back the running going into 2014 totally burned out before signing up for Chicago and NYCM again. I had a pretty stellar summer of running. I would have to stop MOST long runs but it wasn’t awful. I specifically remember having a date night at Dos Caminos the day before a 20 miler getting drunk eating cheesy, bean goodness and being totally fine the next day for the long run. It was as if I was daring my “sensitive stomach” to react and it didn’t. I thought yay I don’t have to be so careful.
Then the week before Chicago shit got real. As I was tapering I started to feel like crap. I tried to stay positive but all of a sudden everything that had gone right for the past few months disappeared and I was miserable. And then Chicago happened and I was in every portapotty at every stop on the course. I cried. I was miserable. I threw my Garmin at my friend around mile 16. But still chalking it up to my stomach being sensitive.
I tried to ignore just how not normal it was (blood like a lot of blood all the time) and spending up to 20 trips a day in the bathroom.
Then NYCM happened and I think I literally only ate Kaiser rolls and grilled chicken for a week preceding hoping to be okay and I miraculously wasn’t quite as miserable.
But then a downward spiral continued. I finally went to my doctor and she immediately was like – You know absolutely nothing about this is even borderline normal and you need a specialist immediately. She also made me go gluten and dairy free.
Things got even worse. I finally make it to the GI and he seems awesome! He listens and schedules a colonoscopy for 2 days later.
Colonoscopy happens. He immediately puts me on Canasa as he awaits biopsy results but says it looks like Crohn’s. I wait. It’s the holidays.
He tells me the results are inconclusive yet puts me on Asacol. I cry. I am frustrated. He is putting me on medications but saying he doesn’t know. I am perplexed. I reach out to social media to use it for its powers of good and get a doctor recommendation.
I go to my new doctor who takes one look at my colonoscopy results and tells me, yes he is 90% sure this is Crohn’s. At the time I am feeling a bit better on the Asacol and we continue on that path. (side note he is awesome – he spent 2 hours with me that first day).
About a week later everything falls apart and I start getting sicker than I have been yet. He schedules me for a flex sigmoidoscopy. I get to be awake during this, yay! Immediately he diagnoses me as severe and puts me on Prednisone and Rowasa. I get a little sad but happy we are stepping up our game.
A week later, I am not improving and seriously getting worse. He goes through some options but decide that Remicade is the best course of action given the severity and non-responsiveness of steroids. We begin the approval process with my insurance and a week later it is being shipped to my doctor.
That Monday for the first infusion I said some prayers that this would be the answer. I honestly wasn’t even that concerned or sad that it had gotten to this I was just hoping this would help. The infusion went fine. No reactions and I left in a Benadryl daze (take Benadryl for the infusion) and went home.
That night and the day after I felt like a bus had hit me and was a little sad to feel so crappy BUT within 48 hours I was getting better symptom wise. I wasn’t running to the bathroom throughout the night, bleeding was slowing down, and I could make it through a meeting at work not desperate to leave for the bathroom.
About 10 days after that initial infusion as I got on the train I realized I didn’t seek out the train car with the bathroom. I WASN’T WORRIED. After 6 months of plotting my life out around bathrooms and avoiding things because I wasn’t sure of having access, I finally felt I was going to regain my life.
I had my 2nd infusion on Monday and this time I felt fine after and the following day. In fact I had more energy! I even ran Tuesday and this morning BEFORE work. I haven’t worked out before work in months.
I have so much hope now. I got to a very dark place for a while. My non-existent iron levels had me doing nothing but work, gym and sleep. I was stubborn in that I more or less kept up a gym routine but good lord I was fucking tired as shit for months. Every class I took yoga, spin, running, boot camp I gave a disclaimer to the instructor that if I ran out there was a reason.
For some reason my symptoms would get the worst the second I went to bed. I would be up the majority of the night running back and forth bed to bathroom. I occasionally brought my pillow to the hallway and laid down outside the bathroom because it would get exhausting. Then trying to actually get to work and being afraid to leave my house for the train…it was awful. Running to the bathroom constantly at work was taxing. Especially when the bathrooms closest to you are off the kitchenette. Hi that is fun.
But now, it is amazing how a couple of good weeks can erase months (and quite frankly years) of feeling awful. I am hopeful that the positive reaction I am having to the Remicade continues and won’t stop. I know many have had success for years and am hoping for that same success rate.
But basically, it feels good to have my life back. I finally feel like I can reclaim normalcy as we get to remission.
And if you are still with me, thank you! I have had so many messages that have picked up my spirit and lifted me even when I was at my lowest. It helped oh so much when you feel so alone. It has truly been appreciated!
Reading this made me so sad for you, but also so excited that the remicade is WORKING. As always, sending you internet hugs. <3ReplyDelete
I love internet hugs and all the support! xoxo :)Delete
I've been semi-following along with your "journey" (if you want to call it that...) via Facebook and after reading this, I am so sorry for what you've gone through! I cannot imagine dealing with those systems for close to 3 years... and them getting worse over time. You are a trooper to continue pushing until you found an answer. And I am SO happy that Remicade is working for you. Fingers crossed it continues to provide you an answer.ReplyDelete
Thank you Becky! I am fairly open about it all but just hated being all whoa is me about it, it has been rough. As I get better I realize just how much I altered my life the past couple years around how I was feeling, and it is a great to feel like I can reclaim my life.Delete
This strikes me so much of what I've been through. What is always important to remember is that you can emerge from the darkness. I am just so, so happy for you that you are getting treatment that is helping. No one deserves to live in pain, or to be afraid of leaving the house. Keep me updated, ok? I'm in and out and all around right now--but keep me updated!ReplyDelete
Thank you so much! Connecting and being able to read your journey with Crohn's has been quite inspiring. I am so happy that thus far the Remicade is working. It is putting in perspective just how much I altered my life around this the past few years not having answers. I am definitely still hesitant in believing how well I feel (still scared to death to run outside more than a mile route) but hoping in time I can forget the past and return to living more freely!Delete