I thought it would be interesting to share my struggles living with Ulcerative Colitis (an incurable disease) as an entrepreneur and the different ways I cope with it. Hopefully, it will give some inspiration to someone out there who is also fighting. Or provide some encouragement for those who think a disease might be holding them back.
“You can’t tell an entrepreneur he can no longer be one…”
A little about me
I’ll be the first to admit it, I’m a workaholic and was born an entrepreneur. And that has probably contributed to my health over the years. I’m a little OCD and very much a perfectionist. I’ve always believed if you’re going to do something, do it right. There’s never a time when I’m not thinking about my work; it’s just in my blood, and I can’t turn it off. Trust me; I wish I could.
Growing up, I never ate healthily and was the guy popping energy drinks all through college. I was always at my computer working on a website or the next big hustle to make more money online. I always said, “I’ll sleep when I’m dead.” Little did I know how unhealthy that was and how I later might get really close to that.
One day everything changed
It all started back in May of 2014. I woke up one morning with slight stomach pain. I nodded it off and ignored it thinking I probably ate something wrong the night before. Little did I know at that time what was about to come. Over the next couple of months, I started having stomach pain that lasted 24/7.
June of 2014, I flew out to be the best man at my brother’s wedding. And while it was one of my proudest moments as a big brother, I also didn’t feel that good. I had a looming feeling that something was wrong.
By the middle of June, my stomach pain was constant, and it got to the point where I could no longer fall asleep because it was so bad. I’ll spare you from the messy details and will just say: my bowels were messed up.
By the end of June, I finally went in to see a doctor. He ran a blood test and diagnosed me with Celiac Disease (little did I know at the time this was the wrong diagnosis). I was shocked, to say the least. If you have Celiac Disease, it means your body can no longer tolerate any amount of gluten.
My doctor said to go gluten-free immediately, and I should be fine. I was not happy about this news, but I was in so much pain; I was still relieved that I might find some comfort at last. After lots of reading online, I got in my car and headed for Whole Foods. I figured out of any place this was going to be the place with the most gluten-free food.
Thankfully I only live less than a mile from one. To my surprise, there were many options, even though it might be slightly more expensive, there is almost an alternative for everything.
Over the next three weeks, I ate 100% gluten-free and still wasn’t feeling any better. If anything, I was in more pain than ever. So I headed back to my primary care doctor. He said the next step was to see a Gastroenterologist (GI).
I went to a GI, and he said I needed to have an endoscopy and colonoscopy immediately. A what now? I had never even heard of these before. Afterward, he explained that the endoscopy would be looking down my throat, and the colonoscopy would be; ya, you guessed it, looking up from the other end at my colon.
The endoscopy would confirm the Celiac Disease diagnosis, and the colonoscopy would see if there was anything wrong with my colon. He told me he could do both at once, so I would only have to be put under one time. Wow, suddenly this was getting scary! Put me under? Things just got real.
Thankfully a coworker of mine agreed to drive me to the appointment and wait there while I was put under. They don’t let you drive afterward.
All the scoping went great, and after looking at my colon, he immediately diagnosed me with moderate Ulcerative Colitis and not Celiac Disease. Ulcerative Colitis is an autoimmune disease where the colon is no longer breaking down the nutrients it should, and it gets inflamed.
Basically, my colon is working against me. And then he said it; “there’s no cure.” Wait, what now? No cure? My thoughts were racing rapidly, and I didn’t even hear what he said after that. What was I supposed to do now? Just a few months ago, I was perfectly fine. Now I suddenly have an incurable disease and am waking up in the hospital.
I asked him how I got the disease, and unfortunately, since it is an autoimmune disease, there’s nothing that causes it. My dad has Psoriatic Arthritis, an autoimmune disease, and the chances of me getting something were always higher. I happened to be the lucky winner with Ulcerative Colitis.
Over the next couple of months, I spent countless hours in doctor’s offices trying to find the right medicine to help my Ulcerative Colitis and juggling insurance issues. I got blood tests, vitamin deficiency tests; you name it. I feel like I have a permanent scar on my arm just from how many times I’ve given blood.
The doctors first put me on Lialda, and even with my BCBS insurance, I had to pay $750 per month out of pocket for a 30 day supply. I thought that was ridiculous! So much for the American healthcare system.
I’ve learned going through all of this that, unfortunately, you can’t trust doctors. You aren’t their family, and at the end of the day, you’re simply another appointment to them. When they go home at night, they aren’t thinking about your problems. Do your research!
A GI even told me to my face that “there’s so much we don’t yet know.” That’s scary for those of us dealing with health issues like these.
I decided there had to be something better out there. After searching on the web, there was a medication called Colazal, which was very similar to Lialda. The good news is that it only cost $10 a month after insurance. After telling my GI, I wanted to switch to this medicine; he agreed.
By November 2014, I finally got my stomach to a somewhat manageable condition, and I could see the light at the end of the tunnel. Little did I know something else was coming.
In late November, I started developing weird side effects such as excessive sweating, urination issues, etc. I tried going off my UC medicine to see if they were the cause, but no luck. It got so bad that I had to start working from home.
I tried many different things over the next couple of months: I went to see two different dermatologists and even visited the all-mighty Mayo Clinic. I tried the following medications: Dermidry, Oxybutynin, Propranolol, Robinul.
Speed forward to February 2015. I was still having to work from home and was experiencing the same symptoms, with no doctor having any idea of what was going on.
I decided to see a urologist, one of the only doctors I hadn’t seen yet. Upon examination, I turned out I had prostatitis. Basically, my prostate was inflamed. Finally, I had found what I hoped was an answer to the end of this! So he immediately put me on antibiotics for the next 12 weeks.
By October 2015, I was finally able to get off all medication and antibiotics. This was all thanks to changes in my diet! After doing more research, I told my GI I would not be coming back.
In June 2016, I hit the one year mark for being off all of my medications.
I’m now 100% gluten-free and exercise more than ever. With my newfound faith in God and my healthier lifestyle, I will conquer these illnesses. Eating gluten-free has significantly impacted my quality of life and allowed me to get off all my nasty Ulcerative Colitis medications.
By 2018, I was still off of all of my medications. I even forced myself to take a trip overseas. Taking more fiber has helped a lot. I recommend Metamucil.
A big key to my success was sticking with a gluten-free diet for more than three months straight, without cheating. When I first tried, I only stuck with it for a couple of weeks, which wasn’t long enough. Remember, you have to give your colon time to heal. You can’t just wipe out 20+ years of bad eating habits overnight.
Read about all the tricks I have learned living with Ulcerative Colitis.
As of March 2020, I’ve been off all of my medications for 4+ years thanks to my 100% gluten-free diet. I don’t ever cheat, and the temptation is no longer there.
I’m still trying to cut back on my caffeine intake, ☕ but that is a more challenging goal for me to conquer. I will get there!
As an entrepreneur, my mind never turns off. Dealing with so many health problems does put a damper on your spirit. Even today, I still have good days and bad days. When I was diagnosed with Ulcerative Colitis, I was only 27 and asked God every day, “why is this happening to me?”
I have so many goals I still want to accomplish in life. I look around me and see other entrepreneurs hitting their goals. When I was going through the worst of it, it took everything I had to pull myself out of bed. Digestive issues completely drain your energy. Merely going to the grocery store was a big deal.
I would not have made it through all of this without my faith in Jesus Christ. Seriously there were some days I wish I could have just ended it all. Anyone that has suffered from chronic illnesses knows exactly what I’m talking about. There would be days where sometimes the only thing that got me through was hearing that one song on Air1 that I needed to hear.
I had to keep reminding myself that God is in control and that he still had a plan for me. Watch the movie “Miracles From Heaven,” trust me; it will help.
“Pain is a holy angel which shows treasure to man which otherwise remains forever hidden.” Adalbert Stifter
I’m very fortunate and blessed to have a loving support group of friends, coworkers, and family. I wouldn’t have made it without my parents. Even though they live in a different state, they were with me every step of the way (in spirit and on the phone).
My Mom emailed me the following video from Casting Crowns one morning, and it was just what I needed. I’ll never forget everything my parents have done for me.
I also recommend anyone who is struggling with health issues to take advantage of online support groups. Here are two great ones for people struggling with Ulcerative Colitis:
I’ve learned more in the above support groups than anywhere else. Chatting with other people who know exactly how you feel and have experienced what you are going through is sometimes what you need to get you through the day.
Tip: If you can get to a place of remission, I’ve found that it’s sometimes healthier to stop visiting these groups. Sometimes dwelling on all the negativity can make things worse. It depends on the type of personality you have and how you cope with things.
Once I got to a good place, it was better to focus my energy on other things in life. For some, it can be rewarding to help others regularly in Facebook groups. I choose to do that by sharing my experiences on this website.
Accomplishments despite my chronic illness
I’ve been working from home since 2015, and that definitely has helped me keep my condition under control. Despite everything I went through, I’ve accomplished so many things.
- I worked as the CMO at Kinsta for 3+ years.
- I started a company, forgemedia LLC, with my brother. We now work on this full-time together.
- Even with all the medical bills, I managed to pay off all my student loan debt and am happy to be living life completely debt-free.
- My marketing blog has generated more growth than I ever thought possible.
You can read more about my bio and accomplishments on my website: brianleejackson.com.
I’m not done yet in life. I will conquer these illnesses, and I will still check off the goals I want to accomplish. I will not let anything deter me from that, not even living with Ulcerative Colitis. In fact, I think being an entrepreneur is some days the thing that kept me going through all of this.
One of my new goals is to help support and give back to the Crohn’s and Colitis Foundation (http://www.ccfa.org/). This is an incredible non-profit organization dedicated to finding a cure for the 3.1 million who have Crohn’s, Ulcerative Colitis, and IBD.
Don’t let anything hold you back from accomplishing what you want to achieve in life! Are you currently living with a chronic illness? I would love to hear your story below.