This post is for those of you who want to know.
This isn’t my favorite subject. I don’t enjoy talking about my disease but as I’ve been scouring the Internet lately, searching for people who have gone through similar experiences as me, I figured I should return the favor. I should contribute to the vast array of blog posts out there to share about my UC over the past 6 months. I should put myself out there in order that someone else can know they’re not the only one.
I was diagnosed with Ulcerative Colitis almost 8 years ago (2009) and have had two big flares and a series of drug failures since that time. My UC is classified as “moderate to severe” and while it’s been worse than some, it’s much better than many others. Over the course of my disease, I have taken countless doses of Prednisone, failed on the oral drugs including 6MP and now cannot tolerate any of the anti-TNF agents (Simponi, Remicade, and Humira). Currently I’m on to Entyvio, which is a relatively new immunomodulator drug that is gut-specific. Because it doesn’t have the same risks of body-wide side effects, it’s safer and hopefully just as effective as the systemic agents. I’m still in my loading dose period and waiting to see how effective it truly is for me.
For about four years, I enjoyed a glorious remission. I didn’t have any symptoms, I didn’t have to change medications, and I even forgot that I had this disease. Conveniently, that was during my first pregnancy and my child was successfully born without two heads or anything crazy (I was on Remicade). I got to enjoy my pregnancy feeling wonderful, which is ironic considering most people feel dismal. In some ways, I think I took it for granted, as if it would last forever.
Unfortunately, it didn’t. After I stopped nursing my daughter, my hormones went haywire and sent me into a slow flare, which culminated during the holidays this year when I could barely drink anything but chicken broth and lost about 8 pounds in only a month or two. With a toddler and grad school in the mix, it was a really difficult time for me. I questioned God’s goodness. I wondered if my symptoms would ever abate. I felt very scared and uncertain about the future. My husband stood next to me as the voice of reason, whispering the truths that my heart believes: that God really does love me; He does have a plan for all of this, and I’m not dying.
During my most recent flare, I completed a 40mg Prednisone taper, which took several weeks to take effect but eventually got my flare under control. I experienced most of the typical side effects including insomnia, mood swings, and a consistent feeling that I might be going crazy. I have a love-hate relationship with Prednisone because it wrecks your everyday life and simultaneously gives you that everyday life back. It’s a frustrating oxymoron. After two months of feeling like I just might not make it, my symptoms miraculously stopped, I started to eat normal food again and I was warily convinced that the worst was over.
But I had more complications in store. A few weeks after that, I developed a serum sickness reaction to my monthly injection, Simponi. Serum sickness is a condition that occurs when your body builds up antibodies to an unnatural substance, like this drug, and can vary widely depending on the person. For me, this reaction consisted of overwhelming fatigue and debilitating joint pain that lasted for weeks. I could barely do the dishes or type on the computer because it hurt so badly. So I spoke with my doctor, told her about my reaction and we decided Simponi was out, done. Actually, I don’t feel like it ever worked well for me to begin with, so I happily waved goodbye and we moved on to the next drug.
Because of my undulating medical course, I had to have a colonoscopy in February, my third one since my diagnosis. Usually I wake up crying and vomiting, but this time I woke up groggy but peaceful, probably mostly due to some wonderful pre-procedure Versed and the glorious drug Propofol (apparently in my post-procedure haze I kept telling Seth that propofol is the best drug on earth and everyone should get it.) Only an ex-ICU nurse would say that. My scope didn’t look terrible (I didn’t have overt cancer) but the words “precancerous polyps” were enough to convince me that I needed to get back on another biologic med and get this inflammation under control. Not exactly the words you want to hear as you’re coming out of a conscious sedation fog in the recovery room.
So, after about a year and a half of being off Remicade, we decided to try it again. I had gotten off of it mostly due to insurance and convenience reasons, but it was so effective for me previously that my doctor and I figured we could attempt another dose. While there was a possibility that I had developed antibodies to the drug, it wasn’t certain and that chances were good enough to experiment and see. I went in for my infusion that day, hoping to be greeted by a long forgotten friend, and instead felt like I had been betrayed, stabbed in the back by a distant love. A few hours after the infusion, I experienced nearly the same symptoms as my serum sickness with Simponi: overwhelming fatigue and debilitating joint pain. I cried bitter tears, not necessarily because of fear or pain, but because I had such high hopes for the resumption of this med and those hopes were left behind in the infusion chair that day.
After this unfortunate setback, I had another discussion with my GI, a frank one where she communicated that I was done with the anti-TNF agents forever (I never even tried Humira because it’s the same class of drug and I would most likely have a serum sickness reaction with that too). Now I was left with one remaining option, the only other drug available to me outside of clinical trials: Entyvio. I had actually read an article about Entyvio a few weeks prior (God does work in mysterious ways) and so I was somewhat familiar with it, although the drug has only been on the market since 2014. When I started Remicade in 2011, it didn’t even exist as a treatment option yet. Because it is gut-specific, it doesn’t carry the same systemic risks of cancer (!!!!) or immunosuppression, so it actually may be a safer and more effective option. We can only hope. So only a few weeks after my Remicade reaction, I found myself back in the infusion chair and ready to try again.
The jury is still out. I’m still waiting to see if Entyvio will work and really the only way we will know is if I stay healthy for the next few months while I’m eating my Paleo food and taking my supplements. What happens if Entyvio doesn’t work? I’m not asking that question right now because I don’t want to know and it won’t do me any good. My worse-case scenario syndrome doesn’t need any encouragement.
There’s a reason that I placed that picture of my family at the top of the post. Yes, we look cute in our holiday red and black, but that’s not the point. This photo was taken on my worst day, the day after Christmas, the day that I thought I might just crawl into bed and never get out. I didn’t eat. I could barely catch my breath I was so anemic. I physically had to keep from yelling at everyone to leave me alone. It wasn’t my finest moment. But I look fine, right? That’s the tricky thing about IBD- no one can tell from a photo. I successfully hid my sickness from strangers, people at the grocery store who look at me and think my life is normal. Only those people close to me knew the extent of my sickness and how it was tearing me apart inside.
This photo proves two things to me, lessons that I hope I won’t forget anytime soon. That I really can make it through most anything, even a flare to go to Christmas (that’s the nursing you-can-do-anything-for-12-hours mentality) and that my family is the best blessing I have. Without my husband, I would’ve ended up in a dark place emotionally and spiritually, throwing a temper tantrum to get God to hear me. Without my daughter, I wouldn’t have had the motivation to get up in the morning and work really hard at getting better. They’re the reasons that I want to be healthy and they’re the ones who support me even when I’m not.
There are a million other lessons that I could describe but that’s enough for now. Everyone has trials they must endure that play crucial parts in their story. These difficulties mold us, shape us, make us who we are meant to be. Often, they’re the most trying times of our lives but they’re necessary and ironically, life-giving. Looking at the narrative of my life, I want my story to be for God. For his kingdom. For his glory. So despite what happens to me in this physical body, I will preach that I have Jesus and that He’s not leaving me. And while I continue to pray for miraculous healing, I know someday I will have a perfect body in heaven and not even remember what UC is.
It’s taken me some really long, lonely nights to be able to say that confidently but now I can. That’s pretty much a miracle in itself.