This is the story of a girl named Lucky…
No, I’m kidding. That would be pretty cool though. I guess I can make it work though because I have been lucky enough to get to know this next individual I will be introducing. Ladies, Gentlemen, all Pronouns, met Drew Protzman, a Crohn’s Disease patient of 20-years and counting.
I met Drew early on in my Blogging and Instagram mission. He has been nothing but a sweetheart, that is of course until we started to get to know each other. Now he’s a sarcastic pain in the bum who gives me some fierce competition with the jokes and I wouldn’t have it any other way. Drew is a talented comedian, a family man, a movie buff, and a great friend. Probably one of my favorite internet Spoonie friends and I am honored that he shared his story of thriving with Crohn’s disease with me and has allowed me to share it with you.
He’s got 20 years dealing with the gift that keeps on giving under his belt and is a great ally, even if he’s stubborn and insists on still drinking radioactive soda on the reg like he’s trying to become an X-men. Drew darling, you are a superhero with or without the green stuff.
To learn more about Crohns check out this article that breaks it down.
Here is Drew’s Crohn’s Disease Story
I’ll never forget the day when I realized something was wrong. A 20-year-old event still feels as though it was yesterday.
I was a small-town kid who had big city dreams: I wanted to play professional baseball and was among some of the best in my class and it was a rare occasion if I didn’t set some new record every time I hit the plate. I was going to be a pro and have my own baseball card just like many of my heroes.
It was the last game of the season, I was 10 years old and the best hitter in my league. I stood up to the plate knowing this would be my last chance at-bat. Something deep inside me was wrong. Not once did I ever strikeout; but that day, I did. All three pitches sent perfectly over the plate. All three bats swung and missed. My head hung low.
My coach was in disbelief over how badly his star player did. I cried in defeat. Not because I let my coach and my team down, not because I struck out, but because I knew something more was going on.
With a heavy head, I left the game and made the climb up to the bleachers, went over to my parents, and told them that something in my body wasn’t ok.
I had no strength and no energy anymore. For a year and a half, we went through all of the testing and numerous doctors visits, until one day, my 12th birthday, a diagnosis had finally come; it was Crohn’s disease.
It had hit me that from that day on, I would forever be telling people that I had an incurable disease, a chronic illness, diagnosed with Crohn’s at age 12.
I’d be sleeping for 12 to 14 hours a day.; waking up at 6:30 AM, go to school, get out at 2:00 PM, go home, do my homework, eat dinner when I was able, then fall asleep at 4:30 PM, only to wake up at 6:30 AM the next morning to start the vicious cycle all over again. I promise you, no GroundHog Day is fun, sans Bill Murray.
Written all over my face, like a Charles Dickens novel, was my intense pain and hidden complaints which I had learned to hide significantly.
When I look back now to those pictures of me at 14, you can see my decline. Headed downhill like a drop on a roller coaster; I was skin and bones, providing my classmates with just the right amount of ammunition to shatter what little pride I had left. I ended up spending a week in the hospital for deterioration and melting away right in front of my eyes.
There is a clear recollection of the constant embarrassment of having to excuse myself 15 times a day to use the restroom. I remember always having this utter cramping & excruciating pain inside every time after I would eat as if something were tying a rubber band around my guts and twist that rubber band tighter and tighter and tighter.
It was then decided by my doctors that we would try to treat my condition with 6MP. The goal: to keep the disease from spreading or growing. The outcome: an allergic reaction to the medication and a hefty case of Pancreatitis.
I started my Freshman year of High School wearing a baseball cap to hide my bald head caused by the 6MP.
Now, not only was I devastated by an allergic reaction on top of a pancreatitis recovery, but now my Crohn’s disease was in a full-on flare up and to make matters worse, my bald head made me look nothing like Bruce Willis.
I had no hair on my head and had huge puffy Prednisone cheeks all through my freshman year of high school; struggling with depression, if not for my amazing support group, my family, my friends, my faith and my ridiculous humor, I would not have made it through. I was determined to overcome…..and I did….at least at being bald and depressed, not at the Crohns. I was going down quickly and only surviving on high doses of Prednisone; the giver of the chipmunk cheeks for those of you that didn’t know.
It wasn’t too soon after that came the news every Freshman boy wants to hear. I got to experience my first Bowel Resection right smack in the middle of the school year. A total chick magnet.
15 rolled around, and with it, an order to remove my ileum. Which was all good because my small and large intestines didn’t need to meet anyway. Just Like a Weeble Wobble, I was right back up and on my feet, ready to take on life’s next challenge.
Afterward, I had a few hospital admissions for hydration issues and Crohn’s Disease flare-ups, but nothing too extreme. I had it all under control.
Ah, College. I was 18 and out on my own. I would still drive back home every other month for my Remicade infusions to maintain my Crohn’s disease.
Something was wrong, AGAIN. I’ll never forget that internal pain rushing through my body that night. My college buddies had tried to help me but the pain was far too intense, too unbearable. As most Spoonies know, stubbornness comes with the disease. I refused to go to the hospital. Didn’t want to be a burden or seen as being “dramatic”. I insisted it was nothing. “People have it far worse than I. It’s no big deal”. You all know the speech, we’ve all been there, and I was a pro by now.
I called My Pop, and after the pain simmered down a bit, I drove from College in St. Louis to the hospital in Cincinnati, where I then admitted myself for care. To My surprise, I ended up being there for 2 weeks. I had a complete blockage and a rupture. I knew something was wrong if only I was big enough to admit it; to put my needs first.
Blockage cleared, rupture healed, about a month into my Sophomore year I found myself doubled over in pain once again.
It was back to the Gastroenterologist for me which is when he discovered the Remicade wasn’t working. It had failed me and left me with a 95% blockage in my intestines; probably one of my lower breakups. Now with an opening about the circumference of a pencil, I was moments away from my intestines failing and going septic.
So now I am 19 years old going on bowel resection number 2. 14 inches this time compared to the 10 inches removed previously.
After I got out of the hospital for the 2nd surgery, I am convinced they missed my charming mug because it wasn’t more than a few months later I was back. This time we worked out a full month.
Running out of room for the notches on my belt (the wrong kind of notches if you ask me), I had gone back again; this time for a bad flair and severe pain, and this was post-surgery. As I was enjoying my luxury suite, The Alien camping out in my abdomen decided to start practicing his ax throwing. “Acid reflux,” Doc said. I couldn’t help but laugh as the pains grew increasingly worse while competing to see which could puncture my abdominal wall first.
This, my friends, would be my first run-in with what we would later refer to as PTSD. To this day I have yet to experience a more painful sensation. Late at night when I close my eyes to try and sleep, I can still hear the screams; my screams.
As I begged and pleaded to get the nurses and doctors to stop my pain, I felt as if I was a junkie on Skid Row, shot after shot, pill after pill, nothing was taking way the pain. At the risk of sounding dramatic, death was upon me. I never thought I’d be there so soon, so young. I told my mother how much I loved her as the nurses witnessed the headache of me pleading for the Lord to take my life and my Mother pleading with the Lord to save it.
In that moment death seemed like the better alternative to what I was going through. “Give me liberty or give me death” I got it now. What I also got, a nurse that sympathized. To this day I don’t know what she gave me but I woke up 26 hrs later in the ICU. Turn out we could have played football with my pancreas and I had enough tubes coming out of me to make a water park. It was a miracle that I finally spoke up because if I hadn’t, I’d be dead.
ICU 2 weeks. Moved into a room, 3 weeks. I had forgotten at this point what food or drink even looked like as all of my nutrients and liquids were received intravenously. I was on TPN, a nutrient-based substance in which my body received via PICC line.
As traumatizing as I’m sure you can imagine, I was still battling on the front lines of flare-ups, hospitalizations, and PICC lines for the next 4 years. One time so extreme, my guts were compromised and the enemy had ravaged its way through my colon that my only shot at nutrients was another PICC line for 9 months. I probably would have been less scared if Mr. PICC -line -Man didn’t look like Christopher Loyd in One Flew Over the CooCoos Nest.
He tried twice before he realized I was passing out from the bloody mess escaping my arm. My legs were now all spazy from the contact with my nervous system. After those 2 failed attempts, they finally rolled me onto the creepy operating table where they had Nurse Ratched strap me down and roll out my arm. I tried to fight them to not proceed until I was “comfortable”, you know, so it wouldn’t hurt like hell. Turns out I didn’t have much say. They strapped my arm down and began running the Picc Line until they finally got it in.
I wasn’t doing great but I was managing my Crohn’s Disease somewhat. I even moved back to St. Louis at 25 to try the college thing again. There was an obvious struggle but I powered my way through it. It’s pathetic when you become so used to the pain you actually have to start budgeting for Tylenol. My money was being wasted on drugs and not even the “fun” kind. When was the last time you saw some hooded man on the corner saying “hook me up with that acetaminophen yo”. My life wasn’t entertaining enough, only now I had gone broke due to my Tylenol addiction.
On top of this obscene pain I was feeling, I also began bleeding from my pants. I was going through shorts after shorts, bleeding through my jeans, confused as all hell because I was about ten years and two ovaries too late for whatever the hell this was. So I got into my GI as soon as I could. That’s when he found it; I had a perianal abscess.
After a series of X-rays and Ct scans, we had found multiple fistulas tunneling through my insides and out of my skin. Like the NYC subway system minus inflation.
I was rotting was away, inside out. I had three surgeries in six months with no sign of improvement. That’s when the surgeon came to me and said these words I’ll never forget, “your colon has to go, Drew, I’m sorry”.
I left one semester. I moved back home to Ohio to be close to my folks. My condition has finally convinced me of its severity and I knew I would need my support squad during this next chapter of my life. The surgeries weren’t over and even superman needed his mom sometimes.
In Ohio, it was time for TPN #3! This time through a chest port, which led to a Staph infection, that then led to my decision to no longer do TPN. I was done.
I was 26 years old and had tried the “Big 3” Crohn’s Biologics. The Remicade, Humira, and the Cimzia. All 3 failed, I had 3 more surgeries and my colon just didn’t stand a chance.
I decide to drive 3 hours one way to Cleveland Clinic. My hopes were high. My hopes were that my constant pain and 16-20 bathroom visits could be somehow cured through late-breaking methods or experimental treatments. Cleveland Clinic is sanctioned to try experiments for new trial drugs and are known for their cutting edge technology and gosh, what did I have to lose?
“Your colon is rotten and raw. It looks like raw bloody hamburger meat inside of you. You’re suffering and you know it.” – Colorectal Surgeon
Before the surgeon even said the next part, I dropped my head in my hands with tears rolling down my face, pale as can be, because I knew what came next. I tried so hard to prevent this next part but there was nothing I could do. It was inevitable. We all knew it. I just wasn’t ready to believe it.
”You have to have an ileostomy.” -now my least favorite Colorectal Surgeon
The next 5 months were lacking in sleep and filled with night terrors of my upcoming surgery. When the day so slowly crept upon us, I remember every detail like it was the last breath I would ever be taking. The day before and the morning of the surgery were so clear like my favorite movie replaying in my mind.
The nurses wheeled me back to the OR I had become so familiar with. The anesthesiologist looked at me and knew even though I was trying to be tough that I was scared. So he shot me up with something to calm me down. They knew what they’re doing and I’m sure he saw right through what I thought was my best “cool, calm, and collected” face, and saw a young man who had no idea what this meant for his life; the life he was supposed to be out enjoying.
My favorite part came next and if you’re a fellow IBD surgical survivor, you know all too well what I am referring too and are most likely picking up on my sarcasm, because, that’s right folks, its gurney to table time. This may just be the single worse thing I’ve experienced in my life.
After what I believe should have earned me an academy award, I heard the nurses getting ready, spoke to the surgeon who was doing the slicing and dicing, and right as they began to put the magic sleepytime mask over my mouth, I screamed.
“Just let me look. One last time.” I knew it would never look the same again and I wanted to be able to remember it how it was given to me.
When I was secure in my moment, I gave them the okay. The okay to alter the only way of life I knew, the okay to start over with blank pages.
Four and a half years have gone by since I said goodbye to, in my opinion, what was a pretty sexy looking abdomen. There have been a couple dozen setbacks and a few more hospitalizations but I’m still managing. I’m 32 years old now, I am on Entyvio and reacting to the medication quite well for once. As I look down the barrel of another surgery, this one for being “put back together”, the surgeons riding me off my ileostomy, I have to say while I’ve been through a lot, I’ve also overcome a lot. None of which would be possible without the help of my amazing Mom & Dad, the greatest older brother, my family, my dearest friends, and most of all God.
If you’re reading this and find yourself battling similar struggles or feel a victim to IBD I ask you this, Don’t Give Up Hope.
You’re never alone…There are amazing people here like Marie who runs this page and even myself who are here for you! While Crohn’s Disease can be vicious at times, you are that much stronger cause you are important just as the next person.
We care about you, I care about you. The research and medical advancements have come so far in the 20 years since I’ve had Crohn’s disease, February 9th, 1999 ?. And they are closer to a cure or at least managing the disease and giving you & others a long amazing life. Don’t Lose Hope. Keep your head high. Every move you make with this disease is a step closer for the next person, someone, somewhere, maybe even you.
I look back at the moment standing at the plate, 10 years old…Swinging and missing on 3 consecutive pitches. I didn’t strike out that day…No….I’m still in the game and I plan on winning ???
I want to thank Drew for his constant bravery and empathy. His willingness to be there for others, and his awesome sense of humor. Thank you for allowing us to share your story and struggles of your Crohn’s Disease. You are a True Warrior.
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