It's 3am, and I'm getting ready to slug down the second half of my bowel prep, so I apologize for spelling and/or grammatical errors in advance. No, I didn't get into an accident, but these days I do feel like I've been hit by a bus. How was Deborah Kerr ever able to hide her traumatic, and life changing event from the love of her life? Well, I can relate. We protect the ones we love, and we don't want them to see us hurting. The last thing I want is for my 3 small children, and husband to ever see me in pain.
I have had many a flare over the years, but I am very fortunate to be able to count on my hands the number of off-the-charts mega flares. Right now, I am amidst the worst one of my life. I had been in remission for four years, and although I am 110% in support of COVID vaccination, the booster sent my immune system into a downward spiral (staring late October). I do think the alternative would be worse, so please continue to get vaccinated folks. This flare started out with the usual cramping, frequency in stools (10-15 times per day) and blood in stools. This is all "normal" for those of us with IBD mind you. There was one difference though this time around. I have had an intense burning/pain just below my ribcage as well as my lower back. My first thought was, "sh*t, the CDIFF is back!" Things can escalate in a hurry, so my GI doc ordered up all the usual labs (CBC panel, Calprotectin, etc). CDIFF came back negative, but my CLP level was higher than we both wanted it to be. For a frame of reference, a normal calprotectin level is <49. Mine measured in at 394.
I swore I would never go on steroids again after my first encounter with the devil, but this time was different. It's not about me. I have 3 kids depending on me. What good am I if I'm in a hospital bed......or worse. I started Budnesone, which has less side effects than prednisone, but still not a walk in the park. One week later, and still not much relief. My CLP levels were checked again, and they nearly doubled. The inflammation was getting worse. This time I had no choice in the matter. It was time to go back on prednisone (40mg. taper). Paranoia, night sweats, hair loss, roid rage, moon face, insomnia.....the list goes on. There was a very stark difference with this flare though. Despite all of the horrible side effects, the powerful steroid typically quells the major symptoms. I anxiously waited for my stools to be more formed, for the blood to go away, and mostly the pain to stop. Oh what we crohnies look forward to. Unfortunately, that didn't happen. One week into the course, and I knew I was in trouble. The day I went down to 30mg. I called my GI, and calprotectin levels were checked again. To my utter shock and disbelief, my calprotectin levels were upwards of 8,000. I even called to double check because I was sure there had been a mistake. No mistake. Something was wrong. Something was very, very wrong.
The next day I was admitted to the hospital for IV therapy, and more tests. What's worse than staying over night in the hospital? Having to leave your 3 babies (almost 2, 4 and 6) at home. My in-laws (love you guys) are a godsend. Knowing your kids are cared for, loved and having fun is half the battle when struggling though a flare. Due to covid, my husband couldn't stay with me overnight in the hospital which presented some issues. I had to face the steroid blast alone. There I lie. Exhausted, but juiced up with steroids and unable to sleep.
Rather than run through all of the minute details, I'll give you the rundown. Basically my body is incredibly inflamed. So much so, that my current medication (balsalazide, which I've been on since 2008) isn't working anymore. What does this mean? After many conversations with my GI team, the consensus was to make a switch to a biologic. More specifically Humira. My initial reaction was, "NO WAY! OVER MY DEAD BODY!" Well, if I didn't get comfortable with this idea, that might be what I would be facing. Let me explain my hesitation with a medication switch. I've been so lucky to be on a very mild medication for the past 14 years. There are little to no side effects, and up until this point, I've been able to manage my Crohn's disease. That being said, Crohn's is a progressive disease, and in my case, balsalazide stopped working. Oofda, this was a big blow for me. First came sadness. Big, uncontrollable raindrop tears. This stage was accompanied by feelings of fear. How will things change? Can I still take care of my kiddos the way I take care of my kiddos? Can I still run? I will be switching to an immunosuppressant, so what will those dynamics look like? I've already been living in a bubble for the past two years due to covid, so now what? Next, I had so much anger. Like screaming at the top of my lungs and smoke coming out my ears anger. I hate you Crohn's disease. You've robbed me of so much. I needed to feel all of the feels to get to the most important part. Acceptance. In order to heal and move forward, this step is so critical. In my case, I've surrendered. I am at peace with knowing that switching to Humira is the next step in my journey. Sure this will be an adjustment, but it's just a minor bump in the road.
This morning I have a colonoscopy to document the severity of my Crohn's disease. Shortly after I will start Humira (self injection bi-weekly....although my husband said he might want a crack at it). So, this certainly has been "A Flare to Remember." It has changed my path forever. Through it all, I remain grateful. Grateful for the lessons learned, for my wonderful gasterenterologist, my incredibly family and amazing friends and IBD community. Without your never-ending love and support, I couldn't do this. A special shoutout to Natalie Hayden with LIGHTS CAMERA CROHN'S. I didn't even ask your permission, but you became my mentor, my confidant, and mostly my dear friend.
I'll keep you all posted after my procedure. Until then, appreciate everything. Each day is a precious gift. Take time to unwrap each and every day. Wish me luck.
