An Entrepreneur: Living with Ulcerative Colitis

I thought it would be interesting to share how I as an entrepreneur struggle and battle with a chronic illness every day, and how I cope with it. Hopefully, it will give some inspiration to someone out there who is also struggling.

“You can’t tell an entrepreneur he can no longer be one…”

A Little Bit About Me

I’ll be the first to admit it, I’m a workaholic and was born an entrepreneur. And that has probably somewhat contributed to my health over the years. I am a little OCD, and very much a perfectionist. I have always believed if you are going to do something, do it right. I’m always thinking of game plans and business… it’s just in my blood and I can’t turn it off. Trust me, I wish I could.

Growing up I never ate healthy and was one of the guys 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 will sleep when I’m dead. Little did I know how unhealthy that really was.

workaholic
Image by herval

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 really wrong.

By the middle of June, my stomach pain was lasting 24/7 and it got to the point where I could no longer fall asleep because the pain was so bad. I will 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 actually the wrong diagnosis). I was shocked, to say the least. If you are Celiac it means your body can no longer tolerate gluten.

So he 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 relief 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.

gluten-free
Image by Memphis CVB

Over the next 3 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.

So I went to this new doctor and he said I needed to immediately have an endoscopy and colonoscopy. A what now? I had never even heard of these terms 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 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 (your awesome Dan!) agreed to drive me to the appointment and wait there while I was put under. As they don’t let you drive afterward.

Diagnosis

All the scoping went great, and after looking at my colon he immediately diagnosed me with moderate Ulcerative Colitis and not Celiac Disease. Which put simply is an autoimmune disease where my Colon is no longer breaking down the nutrients like it should be and is inflamed.

Basically my colon is working against me. And then he said it, there is 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.

hospital
Image by StudioTempura

I asked him how I got this disease and unfortunately, since it is an autoimmune disease there is nothing that causes it. My dad has psoriatic arthritis, also an autoimmune disease, and the chances of me getting something were always going to be higher. I happened to be the lucky winner with Ulcerative Colitis.

Treatment

Over the next couple of months, I spent many hours in doctor’s offices trying to find the right medicine that would help my UC 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 have given blood.

The doctors first put me on Lialda and even with my BCBS insurance, I was having to pay $750 per month out of pocket for a 30 day supply. I thought that was ridiculous!

I have 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 are simply another appointment to them. When they go home at night they aren’t thinking about your problems. So do your own research!

A GI even told me to my face that “there is so much we don’t yet know.” That is scary for those of us dealing with health issues like these.

I decided there had to be something better out there and it turns after searching on the web there was a medication called Colazal which was very similar to Lialda which only cost $10 a month after insurance. And after telling my GI I wanted to switch to this the medicine, it worked just as well as Lialda.

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.

light at the end of the tunnel
Image by L1mey

2nd Whammy

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… no luck. It got so bad that I had to start working from home.

I tried a lot of different things over the next couple of months: I went to see 2 different dermatologists, even visited the all-mighty Mayo Clinic. Tried the following medications: Dermidry, Oxybutynin, Propranolol, Robinul.

Speed forward to February 2015. I was still having to work from home and was still experiencing the same symptoms with no doctor having any idea of what was going on.

I decided to go see a urologist (one of the only doctors I haven’t seen yet). Upon examination, I turned out I had prostatitis… basically my prostate was inflamed. Finally what I hope is the answer to the end of this! So he immediately put me on antibiotics for the next 12 weeks.

October 2015 Update

By October 2015 I was finally able to get off all medication and antibiotics. This was all thanks to changes in my diet!

June 2016 Update

In June 2016, I hit the one year mark for being off all of my medications.

I am now 100% gluten-free and exercise more than I have ever before. With my newfound faith in God and my healthier lifestyle, I will conquer these illnesses. Eating gluten-free has made a huge impact on my quality of life and it allowed me to get off of all my nasty Ulcerative Colitis medications. 

April 2018 Update

As of 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 this is sticking with a gluten-free diet for more than 3 months straight, without cheating. When I first tried, I only stuck with it for 3 weeks, which isn’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.

March 2020 Update

As of March 2020, I have been off all of my medications for 4+ years thanks to my 100% gluten-free diet. I don’t ever cheat on this.

I’m still trying to cut back on my caffeine intake, ☕ but that is an even harder goal for me to conquer. I will get there!

Why Me?

As an entrepreneur, my mind never turns off. And so dealing with so many health problems really does put a damper on your spirit. Even today, I still have good days and bad days. At the time of being diagnosed with Ulcerative Colitis, I was only 27 and was asking God every day why is this happening to me?

I have so many things and 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 just to pull myself out of bed. Digestive issues completely drain your energy. Merely going to the grocery store was a big deal.

Faith

I would seriously 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 am talking about. There would be days where sometimes the only thing that got me through was hearing that one song on Air1 that I really 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

Support

I am very fortunate 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.

My Mom emailed me the following video one morning and it was just what I needed.

“Mom and Dad I will never forget what you 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 have 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.

Accomplishments Despite my Chronic Illnesses

I have been working from home since 2015, and that definitely has helped me keep my condition under control. Despite everything I went through, I have 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. Check out my blog about financial independence: pennybros.com.
  • My marketing blog has generated more growth than I ever thought possible. https://woorkup.com/quality-content/ 

You can read more about my bio and accomplishments on my website: brianleejackson.com.

Conclusion

I am not done yet in life. I will conquer these illnesses and I will still check off those goals that I want to accomplish. I will not let anything deter me from that. 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 now to help support and give back to the Chrohn’s and Colitis Foundation (http://www.ccfa.org/) who is a non-profit organization dedicated to finding a cure for this horrible disease in which over 1.6 million Americans now struggle with.

crohns and colitis foundation

Don’t let anything hold you back from accomplishing what you want to achieve in life! Are you currently living with Ulcerative Colitis? I would love to hear your story below!

Brian Jackson

Diagnosed with Ulcerative Colitis at 27. Going gluten-free literally saved my life. Read my story. Want to see your product on No Gluten? Let's chat.

20 thoughts on “An Entrepreneur: Living with Ulcerative Colitis”

  1. Pingback: Coffee Alternative: Avitae Caffeinated Water Review
  2. I too am medicine-free after being gluten free for over 3 years. The doctors all said that diet has no effect on symptoms, but after doing research on wheat’s link with systemic inflammation, I decided to give it a try. The difference is like night and day. Whenever I cheat and eat something with gluten, I know I’m going to have problems with controlling my symptoms. I also lost nearly 35 pounds which has helped with my energy and fatigue. I’m training for my third half marathon in March. Very happy to hear about your improvement in symptoms and faith in God :)

    Reply
    • That’s awesome! Congrats. Ya I don’t trust gastro docs anymore, I tend to go by what my body is telling me.

      Haha, I used to cheat but haven’t now in months. Just isn’t worth it lol. As you always wake up regretting it. I have found gluten-free treats to get me through the days I want to cheat.

      That is awesome to hear about your marathon! And yes, without my faith in God and family support (even though it was remote) I don’t know if I would have made it through.

      Make sure to check out my other post about gastro docs, that you might enjoy! :) https://nogluten.com/food-matters/

      Reply
  3. I was diagnosed 25 years ago with Crohn’s Disease a mere 3 weeks before my colon ruptured. I won’t go into all the details but to say I literally almost died. After my resection, I came down with an intra-abdominal abscess that again almost killed me! I remember telling my husband that this disease will not defeat me. However, now 25 years later, there have certainly been days that I didn’t want to see another one. Like you, only my faith in Yeshua has pulled me through the dark days. This disease has certainly caused me to long for my eternal home where Yahweh Himself will “wipe away my tears. There will be no more pain, nor sorrow, nor dying.” Rev 21:4 That being said, watching what I eat has helped my GI symptoms, but I have actually had much more trouble with extra-manifestations of CD such as fistulas, cellulits, lymphedema, pneumonia from the biologics, chronic kidney disease, etc. Right now my legs are hot, red and swollen from lymphedema. I start therapy on Tuesday which is quite daunting to say the least. (Google it, life-long effects) Weird how some things really help one person and not the other. I’m glad that gluten-free has helped you . . . not me so much as I said before. Praying that one day here on this Earth, IBD will be no more! Blessings, Lori

    Reply
  4. Thanks for your comment! Sorry to hear about your struggles. Life definitely hasn’t given either of us the easy route. Ya, I wish dieting and my tricks worked for everyone, but unfortunately with these diseases everybody’s bodies are different and respond differently.

    Stay strong and never give up. God Bless!

    Reply
  5. Hi Brian, your story was very interesting. I have been diagnosed with Celiac, microscopical colitis and inflammatory bile disease. After 25 years of being told I had IBS, I’m glad to know what it truly is but it is overwhelming. The doctor gave me lialda and told me that I would have to take it threat of my life because of the colitis. How were you able to quit all medications? I am on a gluten free diet but still learning about it. Thanks

    Reply
  6. I have been gluten free for almost two months now and it is a new lease on life! Who knew that my daily struggles and suffering with gas, heartburn so bad I would often vomit, gas pains, belching (my goodness, how attractive) regurgitation, and even some gallbladder pain would completely disappear when I quit the wheat. Unbelievable! I feel amazing and quite frankly I haven’t cheated because it’s not worth it! Glad to hear you are doing great on no gluten too!

    Reply
    • That is awesome to hear Kelly! Likewise, going gluten-free literally saved my life. And like you said, it can cause so many different problems that just suddenly clear up once you get it out of your system. I wish you the best of luck on your new journey!

      Reply
  7. People should take proper sleep and avoid overnight works on computer to avoid this kind of problems. Taking food at bad times results to this disease.

    Reply
    • Hey Jason I agree that these can help contribute or trigger the diseases, especially stress. However, Ulcerative Colitis is an auto-immune disease which means it is unfortunately passed down through genes, the same goes with Celiac Disease. I definitely urge everyone though to take your advice and not eat late at night and get proper sleep.

      Reply
  8. What a great read and I’m glad to see someone kicking it! This hits home for me since my brother died from UC and celiac (39yearsold) and wrong diagnosis being on meds and remiciad for 15 years. I’m glad to see someone put up a good fight for your health. I too am a warrior 7 open heart surgeries, multiple auto immune disorders and refusal of a transplant I’m still here thank you Jesus! You’re right miracles are REAL and happen everyday as we are living proof! I’d love to feature you on our show…

    Reply
    • Hey Dana!
      So sorry to hear about your brother and wrong diagnosis. Sounds like you are a fighter :)
      Yes, I strongly believe that diet and health are a big part of being able to kick UC. Over three years later and I’m still off of all my meds and going strong.

      Reply
  9. Hey Brian,

    I know this is an old article but I really want to share my current miracle in hopes that it helps you as well as it helped me.

    My onset was quite similar to years though many years earlier. I started to get very sick at 14. I was an A student with a bright future ahead of me, but all of a sudden it progressed from simple bowel pain to fatigue and vitamins defiencies.

    The doctors couldn’t figure out what’s wrong with me, and like you said, they aren’t your family. Fortunately, my aunt suggested going gluten free and in 2 days my life turned around. I still had some symptoms but I could actually be healthy enough to go off to college which I did (BS in Chemistry May 2017!!)

    In 2016, I ended up having to go to the ER twice and I was told it’s likely I kept having “food pockets” in my colon. Realistically, I’m sure I have to go see a gastroenterologist this year and will probably get an additional diagnosis on top of celiac disease.

    Combined with that, I was dealing with out of control anxiety and depression as well as body pains that I now think were fibromyalgia symptoms.

    I decided to try out hemp oil and get my medicinal marijuana card where it’s legal in Florida.

    I had taken a few drops of the oil sublingually before my 3 hour grad class, and when I was walking out I realized almost immediately something was different. The constant body pain was gone. I felt “good” for the first time in months, and I felt 100% functional, more than when I take 250mg of Tylenol.

    When I ate that day, it was painless for the first time in years. I feel like I keep getting better everyday and I would urge you to spend the $50 or so on some hemp oil and see if it changes your life.

    Btw, make sure you do it sublingually to bypass our problematic GI tract. Good luck!!

    Reply
    • Wow, thanks for sharing your story Caleb! It’s crazy the journeys some of us have been on.

      I’m actually doing good right now. For me, Metamucil helped a lot! https://nogluten.com/metamucil-review/ I think for some of us, our fiber ratios get totally messed up.

      I’ll definitely keep Hemp oil in mind for the future.

      Reply
  10. I have suffered so bad for so long I don’t even know what is normal anymore. I have seen every kind of doctor I could think of and been through the most horrific and painful tests for 15 yrs. Every doctor has his own idea as to what’s wrong with my stomach and colon. I had to have most of my colon removed due to severe diverticulitis and while in the hospital I got a bad staff infection and had nothing left within to fight it anymore. I’m tired all the time, hurt so bad I can’t stand to be touched and live in my bathtub soaking in water as hot as I can stand to deal with the pain. I have to work and sitting in a rickety computer chair for 8 hours 5 days a week means I am in bed the other two days dealing with the pain and so exhausted its all I can do. Now I am gluten intolerant… that’s the 8th confirmed medical diagnosis. And it all started with e-coli and eating contaminated beef at a Taco Bell.

    Reply
  11. I was diagnosed with Crohn’s disease about a year ago now and it definitely is no fun. I was also on Cimzia injections most of the year, taking 2 injections once a month. I will tell you I have NEVER been so depressed in my life. I gained 30 lbs and thought about dying almost everyday. And you are so right the doctors couldn’t care less they just want to diagnose and pump you full of drugs. I couldn’t take it anymore and stopped taking Cimzia and now I am taking a aronia berry juice concentrate twice a day instead and I feel better then ever. For sure talk to your doctor before getting off any medicine, but I would look into the juice just adding to whatever you are already doing. It is an anti inflammatory and is by a company called Life brook. I am not being paid to post this. I was just reading all of your struggles and had to share my experience. Seriously life changing. Thanks for listening and good luck!

    Reply
    • Sorry to hear that Courtney. Crohn’s and Ulcerative Colitis are definitely nasty diseases. Glad you are doing better with juicing.

      Reply
  12. Hello everyone,

    About 10 years ago, I was diagnosed with Celiac Disease after asking my doctor to test me for it. I asked, because every time I ate something, I would have explosive, painful bouts of diarrhea (which later in life, turned to chronic constipation). After the confirmed diagnosis, I adapted to the gluten free diet, which helped a lot. The horrible joint pains, that I was feeling in my knees and other places, went away (thank God). Even the muscle pain stopped. I was able to eat without having stomach upset; however, the constipation did not go away.

    I tried Metamucil and other fiber supplements with no effective results. The only thing that, temporarily, relieves my constipation is Fleet Enema. I have been using enemas for the past 10 years, on a somewhat daily basis. I know that this is not good but I have no choice, at the moment.

    As of now, my health consist of high blood pressure, high cholesterol and hyperthyroidism. I am 50 years old and I have been taking medicine for my thyroid issue for over 10 years. The blood pressure and cholesterol issue is within the last 2-3 years. The numbers are slowly getting higher and higher each year. My primary doctor wants to prescribe medication for the cholesterol but I said, “no, I want to try a diet change such as increasing my vegetable intake and lowering my meat intake.” I don’t want to live on meds.

    So, I tried a Vegan Diet, along with eating gluten free. On this diet, I noticed that I ate a lot of carbs (beans and rice, all kinds of tube vegetables, and everything that wasn’t meat, dairy or gluten). I noticed, that I felt more fatigue and my blood pressure went up more (oh my God, I prayed, what do I need to do?)

    I continued to do research and ran into the Ketogenic Diet. I read that sometimes the body could be in an insulin resistant mode which could cause all kinds of autoimmune diseases, high blood pressure and cholesterol. Therefore, I decided to give this diet a try, along with staying on my gluten free diet (gluten free diet is not an option for me because my body just can’t tolerate it anymore).

    For me, the Ketogenic Diet is harder than the Vegan Diet because, my body craves carbs so strongly. Sometimes, I feel like I rather die than to fight the cravings (so, I cheat instead ;). I hate myself when I cheat but I tell myself to keep trying until I’m able to stop cheating.

    Currently, this is my practice for better health. I check my blood pressure daily and I noticed that when I stick to the Keto Diet, I have more energy and my blood pressure is normal and when I cheat with carbs, my blood pressure shoots up and I feel lethargic and brain fogged.

    Sorry for the very long comment but I just wanted to share because I feel specially connected to you guys, like my brothers and sisters.

    Reply
    • Wow, thanks for sharing your experience Juliane. Really sorry to hear about all the things you’ve had to go through. Glad that a Keto Diet is working for you. For me, going gluten-free got me 90% of the way there, and then I had to figure out the rest with tricks over time.

      Everyone’s bodies are different, and it seems with autoimmune diseases that there is no easy answer. Wish you the best!

      Reply

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