Long-Awaited Victory

Hey, everyone. My name’s Seth. I’m the son of a pastor in Florida and I'm into gaming and singing. I'm a seventeen-year-old and I’m writing this today to just kind of tell you my story.

My story starts with running, like all tragic tales of woe. My family and I had just moved into a new school system in Chicago the summer before my sophomore year and I decided that friends and physical activity would be good for me, so I joined the cross country team. If you have any respect for yourself never. Join. A cross country team. When I started out, I was absolutely terrible at it. I consistently placed last or close to last in the competitive meets and I hated the sport with a burning passion. Why would anyone willingly do what other athletes consider punishment?

Anyway, I was bad at running when I started out, but as the season dragged on I started having frequent bouts of diarrhea. Kids, that basically means that I pooped a lot. My family and I figured this was because of the running and we didn’t take it seriously until somewhere around late October, early November-ish. Around that time I started bleeding a lot every time I went to the bathroom, so we went to the doctor’s office to see what was going on. I’m paraphrasing here but he essentially said, “Bleeding isn’t good, go see an intestinal doctor.” So we met my Gastroenterologist, Dr. Guna. He was a nice little Indian guy and didn’t seem too concerned with my symptoms. However, he did say they were problematic enough that I needed to have a colonoscopy. Kids, that basically means that some doctors were going to shove a 100 foot long tube up my bum. I wasn’t thrilled about the experience, but, as some of the older folks reading this know, it wasn’t that bad. I was unconscious the whole time they were poking around down south, so the main thing I remember was the horrendous hospital gown. It was entirely open in the back, so being an insecure, hormonal teen, that wasn’t the coolest thing ever.

So I had the colonoscopy and after I woke up Dr. Guna diagnosed me with a moderate-to-severe case of an autoimmune disease called Ulcerative Colitis. In layman’s terms, my immune system was attacking my large intestine for no reason and that created tons of bleeding sores throughout my colon and rectum. At that point I was using the toilet about 15-20 times throughout the day and waking up an additional 8-10 times at night. So on top of constantly using the bathroom I was exhausted all the time. Dr. Guna assured me that there were a variety of treatment options and that I would be back to normal soon. He prescribed a steroid called Prednisone and I left the hospital feeling optimistic that things would turn around. After a week or two on Prednisone, my symptoms had actually gotten worse rather than better, so we headed back to Guna’s office to move on to the next phase of treatment. He wrote a prescription for a medication called Methylprednisolone (essentially Predisone’s bigger, meaner brother), but warned us that the side effects for the new medication were much worse than the old one. I figured anything was better than 30 rounds of diarrhea every day, so I started popping the pills.

Within the first week, my face started puffing up and I had really bad acne. Not like “oh you’re a teenager and it’s not as bad as you think” acne, but more “wow, your face looks like a nasty, rotting corpse” acne. So that was great. As the weeks dragged on though, my Colitis symptoms did start to improve slightly. I wasn’t bleeding as much, so I wasn’t about to keel over dead, but I was still in the bathroom almost all the time. With minor improvement came major side effects, however. My face continued to puff up and break out and I started getting these stretch marks that looked like someone had taken a serrated kitchen knife and slashed my legs back and forth. I could deal with the physical stuff, but it became overwhelming when my mind started to be affected. When I first started taking MP, I was just kind of jumpy and agitated, but as the weeks turned into months I completely lost it. The medication removed any social filter that I had, so I would snap and clap my hands randomly in public and talk really loudly. I don’t have a ton of memories from the period of time that I was on MP, but my friends graciously reminded me of a time when we were worshiping in church and I just started screaming. Even simple, everyday things like pouring a bowl of cereal and typing a text message stressed me out to the point where I would shake and curl my toes. Eventually it messed up my brain so much that I started hearing and seeing things that weren’t there. I vividly remember one night when I was up at 3:00 AM and the shadow from my ceiling fan looked exactly like hundreds of glistening, hairy spiders crawling on top of each other. The relentless diarrhea and psychological nightmare forced me to stay at home for the rest of the semester from March to June. The high school issued me a home-bound tutor, and it’s by God’s grace and the commitment of my mom and Mrs. Levin to my education that I passed my sophomore classes.

Towards the end of the school year, we started looking into different treatment methods. I went to the hospital every couple weeks for an IV infusion called Remicade (I basically just sat on a hospital bed with a tube in my arm for a few hours). Unfortunately, the infusions never did anything to help my symptoms, so I had to keep taking MP through the summer to control the bleeding. Forcing myself to swallow those stupid pills that I knew screwed up my mind every day was the hardest thing I’ve ever had to do. I knew that I was functioning like someone with Autism and I hated that I was powerless to do anything about it. I’d be lying if I told you suicide never crossed my mind. I felt like death would be easier than the physical and mental trauma I was enduring. I even thought that God might forgive me for killing myself given my extreme circumstances. I believed Jesus died for my sins. I knew I was forgiven. I just couldn’t understand why I was suffering without an end in sight.

At the end of June, Dr. Guna finally recommended surgery. He set me up with a colorectal specialist named Dr. Park and wished me good luck. Park warned me that the operations necessary to cure my disease would be long, invasive, and painful, but he promised that I would recover from Colitis and get off of the medication that had been ruining my brain. My family and I eagerly scheduled the first surgery for the end of July 2016 and felt real hope for the first time in months.

I showed up at the hospital, put on the revealing gown that was now second nature to me, and waited. It took forever for the surgeon, anesthesiologist, and nurses to come and make sure that I wanted to go through with the operation, but after a few hours they finally stuck a needle in me and knocked me out. I woke up that evening and was told the surgery went very smoothly. Dr. Park had successfully removed my entire large intestine and had pulled the end of my small intestine out of my mid torso. I now had a beautiful, swollen, bloody ileostomy. Kids, that basically means that I had a bag strapped onto my belly that caught all the poop that my small intestine was constantly spewing out. The small intestine doesn’t have any nerves or muscles that you can control, so I never felt myself “pooping” and had to manually empty the bag every couple hours. I’m not gonna sugar coat it. It was really, really gross. The bags weren’t waterproof, so I had to take them off every time I took a shower and feces would run down my body and into the stall.

I did, thankfully, get to stop taking MP, so my mind slowly came back to normal after a little over a month and half. While I’m glad I got my brain back, those first few months after surgery were still really hard. I had six months with an ileostomy and they were both physically and emotionally exhausting. I had to drink 60 ounces of water and have a bag of sodium chloride pumped into my arm through an IV every day to stay hydrated for the first several weeks and I was still getting up a few times every night to empty my bag. I did get to go back to school eventually, but it was kind of humiliating to be the kid that pretty much everyone had forgotten about during my 6+ month absence. My good friends remembered me, which was a blessing and a curse. They had known me when I was messed up, so they would occasionally make some casual jokes about Psycho-Seth that hit a little bit close to home. I caught up fairly quickly in my classes and my teachers were very supportive and understanding of my condition. Except for the dirtbag who “taught” my physical education class. He was a grumpy ex-marine who never checked his email, so my first day back at school he hadn’t even read the summary of my story that my counselor sent him. I put up with maybe three days of his grotesquely ignorant “I don’t care if you’re diseased, anyone can run” philosophy before I scampered to the nurse’s office and asked to be switched to a study hall. There are times when the path of least resistance is simply the wisest route to take, you guys.

So, yeah, I learned to manage my ileostomy, got back to being one of the better students in my class, and worked through the first semester of Junior Year without too many issues (I did have one day where my bag decided to peel off when I was on the opposite side of the school from the nurse’s office, but aside from that everything went alright). Finally, in February of 2017 I went back to Lutheran General Hospital for my last operation. This was the big one, the decisive blow, the grand finale. After going through the usual routine of donning the gown of semi-nudity, giving consent to all of the doctors to fix me, and getting an IV in my arm to put me under, Dr. Park sliced me open one more time to shove my ostomy back inside my gut and create a “J-Pouch.” A J-Pouch is really exactly what it sounds like: The small intestine is wrapped around itself into a “J” shape, stitched up, and attached to the normal human pooping zone. The cells in our digestive tract are so good at adapting that the J-Pouch can learn to function like a large intestine by itself over the course of just a few weeks! Or so I was told… In reality, my recovery was much slower than the average person's. I was home-bound for the usual six weeks, but I was still using the bathroom 8-10 times a day for the better part of a year. Now, granted, that’s nothing compared to the 30 daily bowel movements I was putting up with at the height of Ulcerative Colitis’ reign of terror, but it kind of felt like the surgeries had been worthless and that I was back to where I'd started. I was able to head back to school and figured out a system where I would dash to the bathroom between every class, but I chose to stay in study hall and didn't go anywhere off-campus without an immediately accessible Port-A-Potty.

I finished junior year with straight A’s and B’s (which I considered an achievement since I hadn’t been there for the majority of my classes) and learned to better manage my J-Pouch over the summer. Then around July of 2017, my dad got a call from this funny little church called Oakwood and we started making plans to relocate from the frozen tundra of Chicago to the promised land of Florida. As much as I’ve loved living here, I can’t honestly say that I didn’t feel some degree of regret and loss after moving. I had figured that my trial was over after the final surgery and that I’d at least have a year or two where I wouldn't have to make a major sacrifice. I’d connected with my Chicagoan friends really well and they were there for me during the darkest years of my life so far. It was hard to let go of a stable future where I graduated from Hersey, went to a university in the Midwest, and lived my life without much more drama.

I struggled with bitterness and resentment towards God for quite a while after my last operation. I blamed Him for the opportunities and friends I’d lost and the suffering I’d endured because of my disease and there were a number of months where I just went through the motions of church without desiring a relationship with my Lord. I felt like I couldn’t forgive God for what He put me through when, in actuality, it was I who should have been on my knees asking for His forgiveness. I carried that burden of hopelessness and anger long after my body healed.

But that’s the great reminder and joy of Easter! The way has been paved for us to drop our baggage and run into God’s open arms, experiencing His endless love and glory. Regardless of who you are, what you’ve been through, and the crosses you carry, God longs for you. So don’t stumble into the trap that I fell into. Don’t let yourself be consumed by feelings of injustice and depression. We always have a choice to focus on what God has blessed us with instead of what He's kept from us. Choose to follow Him this Easter season. He, alone, can satisfy.

#newlife #disease #pain #faith #recovery #surgery