The reason I workout and living with Gilbert’s Syndrome

Rebecca did something pretty spectacular about a month ago. We’ve been working pretty hard on some projects with sixty4media in the last few months, so she asked what she could do to make it up to me. Working a full time day job, the only time I can get to these projects is in between work and sleep. So, I said that a gym membership would be nice, but she one upped me.

We now have one year memberships to Fitness World in exchange for reports on her progress with getting back into shape and an ad on her sidebar for the duration of the membership. That isn’t bad at all, so I figure I might as well add a bit to the one year deal and provide some feedback on my experience with their facilities and services.

To begin, I thought I would explain more of where my inspiration to workout comes from and why I go to the gym or run in the morning.

Photo by Rebecca Bollwitt
Photo credit: Miss604 on Flickr

For as long as I can remember, I’ve had stomach problems. It wasn’t unusual for me to miss about 20 days of school, from elementary to high school, from being sick, most of the them being flu like symptoms. In the years ahead of my teenage years, I went through a variety of tests to figure out why, but doctors could never find anything.

Have you ever had a barium follow-through examination? That stuff tastes gross, not to mention the numerous x-rays you have to take during this process with some huge machine sandwiching you onto a table. At that age, it was a tad scary.

Around this same time, I was a chunky kid. I wore somewhere between 34-36 husky jeans at one point, and this somewhat followed me to college (aside from that one year I went out for football in 10th grade).

Somewhere near the age of 21, I was tipping the scale at 245 pounds. My diet was hardly the best, and the most exercise I would get would be walking to and from class. I can recall my knees hurting when I would take the stairs all the way to my dorm room on the seventh floor for that little bit of extra exercise, but it was a clue that I really needed to do something about my weight.

To be completely transparent in this story, I took up Tae-Bo. My roommate would leave early in the morning for class, so I took the opportunity of being woke up at an ungodly hour to put the tape into the VCR and follow master Billy Blanks for 30-60 minutes at a time, steadily dropping weight a little bit at a time.

Right around this same time, I came down with the flu pretty bad, and it just so happened that I saw an ad a few days earlier about a flu study they were doing at the School of Medicine on a new drug that would help fight the flu. Better yet, you got paid!

Poor college student. Paid medical study. You do the math.

I got my examination, confirmed that I had the flu, and left the doctor office with a bottle of pills and a journal to document a month of my personal health combined with five more visits for consultations and tests. The subsequent exams consisted of blood tests and a variety of other check ups, but it was the blood that really started to make things interesting.

Three days into the study, I went in for one of these exams. Blood given, I was good for a week until I had to check in again. On that visit, things got interesting.

“When you came in for you previous visit, were you drinking heavily the night before?”

I had the flu, and when I’m sick like that, I don’t want anyone to look in my general direction yet alone drink alcohol. I realize I was going to one of the top 10 drinking schools in the nation at the time, but there was no way in hell that I drank anything within three days of having the flu.

Apparently, my bilirubin levels were off the chart, much like that of someone who is an alcoholic or who had been drinking at least four drinks or more the night before. These results were the same each of the following visits I made to the doctor’s office, and it wasn’t until the final visit that I made that everything made sense. Well, to the docs, but not to me.

“All of your blood tests have been the same through this entire process, and we have come to the conclusion that you are not having an allergic reaction to the drug but that you have what is known as Gilbert’s Syndrome.”

Because I was jaundice as a new born, this was the explanation they gave me. It’s what causes you to have yellowness of the eyes, caused by a high bilirubin count in your blood stream. I can only guess that I got the placebo in this study at this point because the doctor thanked me for my participation and opened the door for me to leave.

Was I going to die? Was this thing fatal? What the hell did this doctor just tell me? The thing is, this person was just a student, so they couldn’t tell me anything more than what their mentor told them to say. It was up to me to figure the rest of this out.

Going to that internet thing, I started search for as much as I can, and there wasn’t much to find until I stumbled onto a site based out of the U.K. that was a community of folks who had found each other to share their stories of living with this condition. That’s where I found a variety of people who had similar stories to myself as well as some who had it far worse. It was a wealth of information, but I didn’t realize this at the time.

Gilbert’s syndrome, often shortened to the acronym GS, is the most common hereditary cause of increased bilirubin, and is found in up to 5% of the population (though some Gastroenterologists maintain that it is closer to 10%). The main symptom is otherwise harmless jaundice which does not require treatment, caused by elevated levels of unconjugated bilirubin in the bloodstream (hyperbilirubinemia).

The source of this hyperbilirubinemia is reduced activity of the enzyme glucuronyltransferase which conjugates bilirubin and some other lipophilic molecules. Conjugation renders the bilirubin water-soluble, after which it is excreted in bile into the duodenum. [wiki]

I tried diet changes throughout my entire life, but nothing ever worked. When this thing kicked in, at its worst, it felt more than awful. You would get feverish, chilled, sweaty palms, your stomach would feel like it was imploding on itself while the rest of your body wanted to curl into a ball from the pressure, nausea, and then the final stages of your digestive system would kick in. It could last for 20 minutes or a few hours, but it never seemed to pass soon enough.

Lay still. Be stationary. Don’t move. Don’t talk to me. Just leave me be. It will pass.

You would think that having this happen to me in the middle of college courses would be the final straw, but it was actually when I was sitting in the studio for a taping of Late Night with Conan O’Brian[wiki] in New York when the final straw came. I couldn’t use their restroom even though I told them I was ill. I couldn’t take it anymore. I got up and went for the door just as the warm up guy finished his set, and they escorted me out of the studio and to the front doors of 30 Rockefeller because once you leave the studio, there is no going back.

My friends stayed for the taping while I wondered downtown for somewhere to deal with this “attack” (as I had come to call them). It just so happened that there was the remnants of a hurricane passing over the city and caused half of downtown New York to shutdown that day. In the driving rain and empty streets of Manhattan, I found a deli four or five blocks away to take shelter in, use their restroom, and get some nutrients in the form of V8 juice and bread.

All I could think about was the things I read on that website, and the one thing I hadn’t tried was exercise. It was at that point that I decided that I was going to start as soon as I got back, and that was going to be beyond what Mr. Blanks could show me on a video tape. I was tired of these episodes, and this was by far the worst experience I had from any of them.

Runner Shoes (250+ miles overdue for change) That following summer was one where I played a lot of roller hockey with my friends. When I wasn’t playing, I would practice in the parking lot with just my skates, stick, ball, and a net. All of that did a lot for my health, and I could feel myself getting better. Then that fall, I was inspired by a roommate at the time to take up running. I haven’t stopped since.

I also made a dietary change in that eating an entire, thin crust, medium Domino’s pizza for dinner became a thing of the past. KFC is never a good place to get a meal, but I used to frequent their chicken strips on a habitual basis. Soda pop lost its place as well. I cooked more for myself and was more conscious about what I put into my body.

In a year, I dropped 90 pounds and numerous inches. I’ve probably gained some of that weight back in muscle, but that’s because I joined the gym at the Fieldhouse[wiki] and started lifting weights. My health got noticeably better and better, and the attacks became less and less. It’s an added bonus when clothes start fitting better and those knees don’t hurt when you climb stairs, but not having those episodes as often made life so much better.

Sun Run 2007 - 1

Getting up at 7AM to go running took on a whole new meaning, regardless of how tired you would be when the alarm went off. You were getting up to feel good for the next month or year, and it’s still the same today.

There is a time here and there when my body will go through a minor episode, but it’s not nearly as impacting as memory serves me. Flu bugs and colds still creep up like anyone else, but those “attacks” are different now. I like having a little more control over how bad they hit me because Gilbert’s Syndrome is with me for the rest of my life.

This is why I workout. It’s important for me to feel good about my health and maybe fit into those pair of jeans a little better, but there is a far greater force driving me to run 6k or lift weights in the morning before work. I just want to get through my days.


10 Replies to “The reason I workout and living with Gilbert’s Syndrome”

  1. Great post John. Thanks for sharing your story. Maybe it’ll inspire me to get of my ass this fall!

    I can’t believe you were 245…you’ve been in great shape since I met you a couple of years ago!

  2. Well written and very interesting.

    Hard to believe you were anything but the ‘hunk’ I met 3 years ago.

  3. Great read, John. Thanks for writing something so personal and so inspiring. I’m with Jeremy, we should all try to follow your example.

  4. Great post John! I need to get off my duff and get fit for my retirement in 5 yrs. or so, this article is just the inspiration I need.

  5. Wow, John–

    It still surprises me when I find out that someone else I know is living with any kind of chronic condition…it’s still so rare for people to be open about what they live with that I assume everyone else is healthy as a horse. It’s hard to imagine that you could have ever been in that kind of disrepair, you have obviously worked really hard to get things on track.

    You are now officially the only other person I know who had to go through those gawdawful barium tests as a youngster–I remember doing them in early highschool and crying because drinking the stuff made me feel so sick, but the nurse yelling at me that if I didn’t get through it, I’d just have to come back and do it all over again. It’s always comforting knowing someone else has been there, and even today goes through some of the same things I do on occasion. Plus, that was totally educational, since I’d never heard of Gilbert’s Syndrome.


  6. Wow, good post John,

    I felt my stomach rise with the mention of the Barium test. I went through that when I was 13 and I remember thinking (between gagging) that maybe death wasn’t so bad.

  7. Thanks for all the comments everyone. It’s been something I’ve wanted to write about for a long time. If anything, maybe it will help make sense of the condition for someone else.

  8. Wow John, I had no idea you were dealing with any of this. Kudos to you for fighting and moving forward. Looks like what you are doing is great for your mind, body and spirit.

  9. Thanks for your post John! My dr thinks I have GS so I’ve been doing some online research and I stumbled upon your post. I too suffered in my teen years going for test after test and never getting any answers. I’m going to follow your lead and take care of myself to keep my GS under control. Thanks again 😉

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