‘Where’s the nearest bathroom?’ I had to plan an ‘escape route’ if things went south. I went home defeated, but tried to do life as normal.’: Man with ulcerative colitis urges others to ‘choose joy and love’

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“Between the years of 2010 and 2017, my life changed forever. I had just graduated college and I was living with my parents at the time, saving up to get married to my high school sweetheart. All of a sudden, I started having bloody diarrhea for about a couple of weeks. So, I went to go meet with my primary care doctor. He referred me to go see a gastroenterologist. Pretty quickly, I received my diagnosis of ulcerative colitis.

I went home feeling completely defeated; I didn’t know anyone with a chronic illness in my family or friends, and this new world was completely foreign to me. I kept just doing life as normal, trying to make the dream happen. I went to school for music business and production, and I always wanted to own my own recording studio. In the area I grew up—Syracuse, New York—there weren’t a lot of opportunities in the music industry. I would try to find odd jobs here or there that would get me close to working with music production.

Courtesy of Jake Schaap

But the paycheck was horrible, and I was planning to start getting my finances in order to start supporting a family, and I wasn’t really in an ideal scenario to do so. In 2011, I went back to a trade school to get into computer networking. I chose this new career path because of the job security I thought it would bring for me in the future, and it seemed like a valid option to provide for a family with. As I was attempting to navigate having ulcerative colitis and trying to build new skills for a career, my colitis wasn’t much of a burden on my life. I would have three to four flares a year. I would then take some prednisone for a couple of weeks, and then I’d be back into remission. There were a few times, though, when things got surreal for me I will probably never forget.

Courtesy of Jake Schaap

It wasn’t until the first few times I completely crapped my pants in public restaurants I really started taking my illness seriously. This is when things started to really shift in my mind. Those were very, very embarrassing and eye-opening moments for me. From then on, every restaurant and every public place I went into, there was always this anxiety I had of, ‘Where’s the nearest bathroom, where’s the nearest exit?’ I needed to plan my location of where I’d sit. Going to unknown places was always scary for me. I needed to plan my ‘escape route’ if things were to go south. Things continued like this for a few years. My fiancée and I got married in 2013, and I also graduated from trade school to start a new career as a programmer. We moved about an hour and a half away from where we grew up, to Rochester, New York.

Courtesy of Jake Schaap

We had a great community there of amazing friends, and they were all very understanding and accommodating of my illness. That was one of the easiest times I had to deal with my illness, because of the great support we had and how active my wife and I were with sports and activities, living up our young, married life! A year and a half passed, and we decided to move away from New York to Charlotte, North Carolina. Our jobs weren’t really going anywhere in New York and so we just decided one day, ‘Hey, what’s stopping us?’ When we got to Charlotte, that’s when things started to get pretty crazy with my health. I got a new gastroenterologist. He had the thought process of getting me off prednisone, which seemed like a good idea at the time since there are several lasting side effects of using steroids for extended periods of time.

I can’t remember what the new doctor prescribed me, but in 2014, this was the beginning of a 3-year flare. Because of the new medication I was on, it quickly got me to a state in my health where no matter what I tried to do to get back to remission, my symptoms became unmanageable. And believe me, I tried everything I possibly could to reverse the symptoms. My wife and I tried so many different diets, so many different prescriptions, and I saw multiple different doctors. Nothing would work. I was an emotional roller coaster, always feeling helpless as a man trying to provide for his family. In the midst of experimenting with new diets, drugs, and doctors, I got pretty good as a web developer, which allowed me the freedom to be able to work from home and have some sort of flexible schedule. I was able to provide for my family, but there was always a risk of losing my job because of how undependable I was at times because of my health, always in and out of the bathroom.

Courtesy of Jake Schaap

I was also never able to do anything around the home to be able to help my wife. I was never able to pick up the home, never able to help make dinner, take the dog out, go on a walk with the dog. You know, simple chores people just take for granted every day. I wasn’t able to do anything—I had such chronic fatigue. I could never get back into remission. I just felt so hopeless. It took a few years to find a doctor who legitimately cared about seeing me get better to find out I had C. diff. With C. diff, in addition to having colitis, this just compounded issues with my health and caused all sorts of pain in my stomach, the need to stay in the bathroom for hours, and the ability not to do anything out in the world. The doctor put me on antibiotics to get rid of the C. diff, but then it messed with my immune system some more.

My prednisone intake was all over the place. The doctor would try to taper me down, and I would get to about 10 milligrams, but then symptoms would increase or I’d get C. diff again, and I would go back up to as high as 60 or 70 milligrams of prednisone. And with this fluctuation of prednisone came a really pudgy face! This cycle continued for a good 3 years, where every medication I took—biologic meds, self-injectables, pills—nothing would get me back in remission. In May 2017, I landed a fully-remote job for an agency as their chief technology officer. This job not only greatly aided in me being able to provide for our family financially, but the owner of the company always helped me out whenever medical issues arose. This included ever-increasing medical costs for health insurance with the business, which I will ALWAYS be grateful for him and his sacrifice.

Courtesy of Jake Schaap

That same year, I realized my illness was isolated to one organ in my body—my colon. There are procedures out there to remove the colon successfully without actually harming your body overall. I began to explore this process, because no matter what I did, no matter what I tried—and we tried everything—nothing would make a difference! That same year, I spoke with a surgeon and started the process of having my colon removed. The procedure is called a colectomy. The whole procedure is a two-step surgery. In the first surgery, my colon was removed completely through a very large incision in my lower stomach, and I had my small intestine temporarily re-routed to come out of my stomach in the form of a stoma. I had a relatively quick ‘recovery’ of about 2 days, where the doctor wanted to make sure I was moving foods through my stoma into my ostomy bag. Not a lot was coming out while I was recovering in the hospital, but the nurse saw enough to feel confident to send me home.

Courtesy of Jake Schaap

Something wasn’t right, though. When I got home that night from the hospital and started eating solid foods again, I noticed nothing was coming out of my stoma. I woke up in the middle of the night in horrible pain, but when I called the doctor they kept insisting it was just gas. A few hours later, I was back in the ER passing out in triage. I quickly made it to the ICU, where the doctors put a tube all the way up my nose and down my throat in order to start sucking all the food out of my body. Come to find out hours later, all of my organs shut down, and couldn’t process foods or liquids coming into my body because of another encounter with C. diff. I was in the ICU for a week, with the hospital sucking out canister after canister of junk trapped in my system. I was experiencing flu-like symptoms of drastic temperature changes, and with so many things going on in my body, I started to hallucinate.

Courtesy of Jake Schaap

I finally moved out of ICU into a private room in the hospital where I stayed recovering for a total of 3 weeks. I was blessed to see the great support system I had with my coworkers, friends, and family who even flew out of state to see me, and to make sure I pulled through during those 3 LONG weeks. After the first surgery, I was scared to finish the total colectomy, so I kept the ostomy bag for about 8 months. Typically, people going through with a total colectomy only wait 2 months between procedures. In September 2017, I finally gained the courage to schedule the second surgery of the total colectomy. The procedure brought the end of my small intestine back into my stomach, created a J-pouch from the end of my small intestine, then re-connected the new J-pouch back to my rectum. It went smoothly. And once again, the recovery was a couple of days, and then I was released to go home.

Courtesy of Jake Schaap

But just like last time, something wasn’t right. I was pooping out A LOT of blood frequently, once every half hour or so. My wife and I quickly went back to the ER. I wasn’t experiencing a lot of pain like I used to whenever I pooped out blood, but there was way more blood coming out than what was normal previously. When admitted to my hospital room, I kept having to go to the bathroom every 10-15 minutes. I did this about six times, and after going to the bathroom with all of this blood coming out of me, I felt dizzy and out of it. I tried walking from my hospital room bathroom to my hospital bed, and all I remember is blacking out and screaming, ‘Help me!’ When I woke up, I was in bed with four nurses around, asking me if my face was fine. When I blacked out, I must have cracked my face on an IV pole or something, because my mouth and nose were all cut up and bloody.

After getting a quick colonoscopy, the doctor quickly realized I had an ulcer right around the place where the rectum and the J-pouch were connecting, causing mass amounts of blood loss. Once they figured this out, it took a whole 15 minutes to fix it up. But then I had the issue with my face! I cracked my front tooth, and I still have scars on my nostril and upper lip. I never fully got my tooth fixed until the beginning of 2020. I had a full tooth implant done for my front teeth that cracked. Once the dust settled, I could finally celebrate the fact I AM NO LONGER SICK! It’s been about 3 years since my last visit to the gastroenterologist, hospital, or doctor. I wanted to regain the time I felt I lost while dealing with colitis for about 7 years.

Courtesy of Jake Schaap

Two things I heard when I was sick I will forever remember and apply are:

1. Separate your thoughts from your circumstances. I am in control of my thoughts.

2. Learning the principles of an entrepreneur when I first moved to Charlotte in 2014 literally changed my whole perspective on work, career, business, and my life.

Also, reading the book, ‘Rich Dad, Poor Dad,’ had a HUGE impact on my entrepreneurial endeavors. When I had my ostomy bag, it was January through August of 2017. My wife and I actually felt relieved during this period because with the bag, my constant stomach pain went away, and I didn’t have to keep going to the bathroom every 5 seconds. We took time for traveling, and we spent time exploring all the sights in Arizona, like the Grand Canyon, Antelope Canyon, and went on an amazing Jeep tour in Sedona. We both worked from home then, so we rarely interacted with people other than a few friends and family when they came to visit. I was self-conscious about the bag getting overfilled when out in public. Since I had it during warmer months in the Carolinas, all I was usually wearing was a T-shirt, which didn’t cover up the fact I may have a bulge on my stomach from the bag filling up over time.

Courtesy of Jake Schaap
Courtesy of Jake Schaap

Back at the end of 2017, I started writing down my colitis journey as a whole in the form of a book, thinking maybe I could help others going through the same thing and find hope and clarity through my struggles. After writing for a while, I realized I didn’t want to relive the whole experience all over again, and for the past 3 years, I have done nothing but grind, hustle, and take back the life I felt I lost. As of winter 2019, I started to ponder if there was a bigger reason why I went through the things I went through. How someone as mentally tough as I have become could maybe use my story and pain and help others going through similar circumstances.

Courtesy of Jake Schaap

So, in January 2020, I set out on a mission to figure out how I can help serve the entire autoimmune community by creating online businesses for themselves in order to gain financial freedom, create mental stability, and help those living with chronic illness live life on their own terms. If there is one thing I can share with people who are dealing with life-long illnesses, it would be to make sure you take care of your mind. You are in control of your thoughts. You may not be in control of your body, or circumstances, but you are in control of the way you react and think about the world around you. Please choose joy and love.”

Courtesy of Jake Schaap
Courtesy of Jake Schaap

This story was submitted to Love What Matters by Jake Schaap of Charlotte, North Carolina. You can follow their journey on  Instagram, YouTube, and his website. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories from chronic illness warriors:

‘I looked at the poop bag and cried. ‘I’d rather die.’ I didn’t want my partner to stop loving me.’: Woman with ulcerative colitis advocates for stomas, ‘Every body is worthy’

‘Your options are running low.’ I was losing blood. My body was disintegrating. ‘But I’m so young!’: Teen raises awareness for Ulcerative Colitis and stomas, ‘I turned it into a positive’

‘My boyfriend didn’t sign up for a sick girl. ‘I’d rather die than have a poop bag attached to me.’: Woman with ulcerative colitis learns to ‘love herself’ despite invisible illness

‘Two months before college graduation, my symptoms returned. The bloat, the blood, stomach pain, and fatigue.’: Young woman diagnosed with severe Ulcerative Colitis, ‘I felt I would never get my life back, now I embrace it all’

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