When I close my eyes, I see that I have two ‘me’s. There is the me of almost 6 years ago. That kid who wanted to be everyone’s friend. That kid whose concern about the future was about which area of science was the most fascinating to study. That kid who was a kid, and did kid-like things, such as playing video games and collecting Pokemon cards. Then overnight, that me was replaced by a second me. This me knew things about a medical world that kids should never need to know about but too often, learn more beyond their years. This me was prowling the halls of the hospital rather than the school yard. This me learned that life isn’t always kind, easy or the way it ‘should be’, but even then, the journey can teach you a lot about who you are, and just how strong of a person you can be
One morning when I was 8, I woke up with the worst stomach pain I had ever had. The pain was so bad that the neighbors could hear me screaming, even though our houses are not joined. Then the diarrhea started. I had two bites of scrambled eggs for breakfast, and had to run to the bathroom 5-6 times afterwards. I could no longer eat anything without running for the bathroom. Around mid-day, I started bleeding. At first different medical professionals I saw thought that it was just a really bad flu, the bleeding was from irritation, and I just needed to go home and drink water and let it pass. At 8 though, I knew that bleeding out of my butt as much as I was, was not normal, and wasn’t just from “a little irritation”. I was staining the toilet-bowl, I was bleeding so much. I also had to be near a bathroom at all times, which wasn’t so much a problem since I couldn’t leave the bathroom at all in the first place. I was starting to make new house plans to expand the bathroom to fit a bed into it. Thankfully, the pain at least had improved. It’s unfortunate that that didn’t seem to suggest an end to all the other problems I was having.
On July 8, 2012 I underwent a gastroscopy, colonoscopy (I refer to them as ‘scopes’) with biopsies to try to pin down a confirmed diagnosis of something. 20 days into the life of the ‘new me’, I was given a name to call my experience – Inflammatory Bowel Disease – Ulcerative Colitis. The scopes had shown that the inflammation was limited to my colon, however my colon was so inflamed and ulcerated that I had developed a condition called ‘toxic mega-colon’. I was quite sick, but I had a name to call it! Little did I know at the time that we were just getting started now that I had a label. I had no clue just how hard it would be to get this disease under control, or at least managed a lot better than it was.
Treating Inflammatory Bowel Disease is a personal, complicated process involving a lot of trial and error. It feels like there is a roulette wheel of treatments that the doctor spins and wherever it lands is your plan. There’s just so many different treatments and combinations of treatment, it really depends how the patient responds, and there’s little to predict the outcome ahead of time. In the beginning, I really thought it would be as simple as taking a medication or two and carrying on my way. I was immediately started on steroids, long-term antibiotics, and sulfasalazine, which was to be my long-term maintenance medication. Unfortunately, the sulfasalazine was just as quickly taken away as it was added when my liver enzymes went shooting through the roof. A new plan was desperately needed.
September was a time of firsts. I was now going into grade 4 at a brand new school, where I knew no one else, but was super-excited to finally be starting the gifted program. The doctors had come up with a new plan to try to get me stable enough to enjoy the new school program, I started with my first IV infusion of Remicade, a biologic medication designed to help suppress certain parts of the immune system. Remicade works well for a lot of people, putting them into and maintaining remission. After a summer spent not being 5 feet from the bathroom, I was ready for any amount of improvement.
I was still on steroids at the time I started Remicade. Steroids are great speed-healers, but their side effects can be pretty nasty. I quickly tripled my weight on steroids, grew somewhat of a mustache and had shortness of breath just moving around. I was also steroid dependent; every time I tried to come off the steroids, my IBD would flare even worse. I spent from the time I was diagnosed until February of the following year of steroids. The kids at school would call me the ‘fat lady’ in part from the weight gain, and in part because I was growing my hair to make a wig for kids with hair loss in honor of my grandpa’s battle with cancer. It hurt to be bullied because of something I couldn’t control, some days I wished that I had the power to become invisible.
By October 2012, 3 months after being diagnosed, we started talking about surgery to remove my colon. The most recent scopes showed that the inflammation, while still limited to my colon, was so heavily damaged that the doctors were afraid that it might perforate. In the end, the doctors decided to try the “kitchen sink” of treatment options. This is also known as the “throw everything you got at it and see what sticks” approach. I was still on steroids, antibiotics, acid inhibitors, Remicade and Methotrexate, and to the mix we added another antibiotic, Mesalamine, suppositories and enemas. At one point I was taking up to 18 pills in my pill cup, although to be fair, I had to take multiples of some pills to get to the right dosage. But here I was an 8 year old kid, taking 18 pills at a time. Life no longer resembled anything like a normal 8 year old. I also started thinking about just how little is known about this disease, both in the public and in the medical world. I had made a decision; the next time we discussed surgery, I would bring up donating my colon to research to find better treatments or even a cure for this disease. By December, I had my chance. I wasn’t improving at all with my symptoms, and the doctors acknowledged that I had run the course of the available treatments. Surgery was as inevitable as the sunrise. Without first discussing the colectomy with my mom, I turned to the surgeon and informed him that if I had to have a colectomy, I wanted something beautiful to come of it. From that point on, I made sure everyone on my medical team knew my intentions.
On February 7, 2013, less than 8 months after I started my symptoms, I had a subtotal colectomy (removal of the colon) and ileostomy (the creation of a passageway from the gut to the skin surface for the point of having wastes exit your body). Nobody wants a surgery like this, but it was the best option for me to be able to have some quality of life. The scans until this point had showed that the inflammation was limited to my colon, and it was clear to everyone that all the medication in the world wasn’t making a difference. My ostomy was just a reminder of the battle that I had survived.
Unfortunately, my story doesn’t end there. It’s normal to have some bleeding following a colectomy. My doctors felt that I was just being a slow healer and assured me that there was no need to worry. By August 2013, I was back in the OR having yet another set of scopes. The results were devastating. I had inflammation in my stomach, but my duodenum was severely inflamed and heavily ulcerated. My doctor said that area of my small intestine looked just like a colon, it was so swollen. For the first time in 6 sets of scopes, I had inflammation elsewhere. Yet, I wasn’t diagnosed with Crohn’s Disease for a full year from this point. The doctors felt that perhaps it was Celiac Disease, so they wanted me to try 6 months gluten-free and we would see what happened after. Well, we ruled out Celiac when after those 6 long months, the scopes showed that the inflammation was even worse than before. They still weren’t calling it Crohn’s, but they did start me on Humira, another biologic, in the spring of 2014. I didn’t last long on Humira because it started causing severe bruising. I looked like I had put up a pretty good fight.
That summer my weight had dropped to dangerously low levels, so I spent the summer admitted to the hospital and put on steroids and TPN, which is nutrition through the IV. During my stay, I had a pill-cam study done, which showed skip lesions through another part of my small intestine. I had officially been diagnosed with Crohn’s Disease. My doctors came up with a new plan of attack, we would start Remicade for a second time, in hopes of overcoming the antibodies and finding success at controlling the inflammation. In September 2014, just as I was going into grade 6, I started Remicade infusions again.
My second go-round with Remicade could only be classified as nothing short of an epic failure. I had some infusion reactions with fevers and rashes during the infusion. After my 4th infusion, we discovered that I had too low of levels in my blood, so we had to increase the dosage to try to get to therapeutic levels. Meantime, I had started to feel extreme nausea and vomiting daily. The doctors started me on a formula-only diet, fed through an NG (naso-gastric) tube that ran from my nose directly into my stomach. The Remicade infusions continued to cause problems. I developed painful, bleeding psoriasis that quickly took over large areas of my body. This was how I learned that a small percentage of people who take Remicade will develop psoriasis, even though Remicade is an anti-psoriasis medication!
I continued on the NG feeds, only having clear fluids with it for 4 months, which is quite difficult in a world that revolves around food. All I wanted to do was to eat something, anything, solid. In the meantime, I had heard that another psoriasis medication, Stelara, was being investigated for it’s potential to control Crohn’s Disease. At the time, because it was only an investigational GI medication, Stelara was only available through the dermatology clinic. Thankfully, I was now also a patient in the dermatology clinic. I started Stelara in May 2015, and hoped that this would be the answer to the continuing GI problems, as there wasn’t any treatments left beyond it.
My psoriasis responded really well to the Stelara, within 48 hours my skin had started to clear. That was an encouraging sign. I had scopes done about 6 weeks after starting Stelara which showed no positive changes. It wasn’t until I had scopes one year into Stelara that we finally started seeing improvement internally. While we waited for the Stelara to work, I had new and complicated health problems pop up. In June of 2015, at a Train concert, I had a hypertensive crisis episode, where my blood pressure shot dangerously high along with my heart rate. I was rushed to the hospital, but released as I was able to sit up and talk, so it was assumed that there wasn’t much going on. Three days later, my mom received a call from a cardiologist at the hospital who had reviewed the scans and discovered that I had Long QT Syndrome, a condition whose first symptom is typically a cardiac arrest. Further tests would show that it’s actually Borderline LongQT, as I have both normal and abnormal heart scans. I also started having major pain in my joints, and noticed that they were starting to pop in and out of place. I continued to vomit daily, and I now had problems with overheating, excessive sweating, feeling dizzy and having heart palpitations. In November of 2015, I had a long-term feeding tube put in, as it was clear to my GI doctors that with my symptoms and history, I would likely continue to need on-again, off-again nutrition support.
I have now been on Stelara for over 2 years. My most recent scopes have shown major improvement from what it was before I started on Stelara but I am still not in remission. Only now there are still no other treatments available to try to attain remission status. I still manage with daily vomiting and nausea, and sudden weight loss as my main symptoms of my Crohn’s. Crohn’s Disease is one of those diseases where you can go a length of time relatively stable, and then all of a sudden find yourself not so stable. I recently spent a month in the hospital after my output through my ostomy, the only way my body has of eliminating poop, suddenly stopped. The doctors ran a lot of tests, including an MRE, ultrasound, xray, and couldn’t find a reason as to why my output has slowed other than my intestines being slow to function. The only thing to do is to wait and see what happens.
This disease, and my overall health, has given me a lot of time to think about what’s important in life. The most important thing is to help others and make this world a better place. I want to be remembered as the kid who made a difference in the lives of others. I’ve learned to use my experiences with this disease to help educate others about living with chronic illness and the importance of medical research. Through my experiences at the hospital, I’ve recognized that certain areas of medicine remain under-funded. GI is definitely one of those areas that doesn’t receive near enough funding to be able to create a healing space for kids to receive their IV treatments. I created Jacob’s Healing Rooms to help raise funds to be able to create child & family friendly treatment spaces at my hospital, rooms that encourage healing and distract kids from the all too-real problems that they face. I try to seize every opportunity to tell my story, because of the hope that I have that one day, we won’t need these treatment rooms at all because a cure will be available. My story highlights the need for research. There needs to be so much more research into this disease, but the only way to get there is to have funding to do the research. And the only way to get there is to increase awareness about this disease.
Nobody talks about Crohn’s Disease. It’s not like other diseases where you hear things like “Did you hear that so-and-so was diagnosed with cancer?”, and you definitely don’t see commercials or advertisements about living with Crohn’s. It’s one of those diseases that there is never a right time to talk about it. You just don’t go around talking about bloody diarrhea and what eating does to the body. This needs to change. Inflammatory Bowel Disease is something that needs to be talked about more. There needs to be a greater awareness of just how much this disease can impact a person’s whole entire life. In 5.5 years, I’ve had 17 trips to the operating room, tried over 9 different medications in various combinations to control the Crohn’s, had NG tube feedings, had TPN (IV nutrition) twice, lost my colon, missed holidays and birthdays, and missed most of the last 3 years of school. Crohn’s Disease led me to become the person that I am today. It may have changed my life overnight, but it also taught me a lot about the value of life, and the importance of making this world a better place, along the way.