How I came to know Ulcerative Colitis, or: “You’ve had your fun. Now you must drive…”

Not to get all School Marm-y on you...

Not to get all School Marm-y on you…

Hi gang. Sorry to be the one to do this, but I’m about to bring down the make-out room with some Serious Health Information Talk of a most personal level. I’ve actually wanted to do this for nearly a month now, but I could never find the time, motivation, or desire. It threw me into a bit of a depressive funk for awhile, to be honest. Two months doesn’t seem like a whole lot of time to start feeling symptoms, getting concerned, then worried, then nervous, then diagnosed, then dealing with everything. But if time has shown me anything, it’s that July is always the longest, hottest, most miserable month of the year, where time seems to stretch out into an infinite horizon, and during that period everything good seems great and everything crummy seems… exponentially crummy. There’s also all the time in the world to let these feelings bounce around in your head, for better or worse, and that’s most efficacious at either letting it utterly consume your life or assisting you in accepting things and moving forward from them.

OK, enough waxing poetic. To brass tacks, shall we? The topic is obviously my recent diagnosis of ulcerative colitis: how it came about, how it’s affecting me, and what I’m doing about it. AND HERE COMES A MOST NEEDED DISCLAIMER: This is going to be a most frank talk, one that will be involving bodily functions. I’m not going to explore the barest scintilla of minutiae with fine detail here, but I should warn you that there is going to be some very honest Poop Talk. NO there won’t be pictures, you troglodytes. But if any of you out there bristle at such conversation — and I totally understand it you are a bristler — just scroll down to The Elevator Pitch section below and I’ll give you a Poop Talk-Free Rundown.

To quote Danny Kaye in the magnificent Technicolor classic The Court Jester: Get it? Got it? Good…

Apropos of nothing, but this is such a BUTTKICKINGLY great movie. See it ASAP.

Apropos of nothing, but this is such a BUTTKICKINGLY great movie. See it ASAP.

So let’s get started with some background…

I was diagnosed with mild Irritable Bowel Syndrome when I was seventeen; I didn’t know much about the disease before then. All I knew is that on odd occasions, I’d have tendencies to vomit uncontrollably after eating. Sometimes it’d be just hurling once or twice. Sometimes it would last for two days straight. More of the former than the latter, but even with IBS it was pretty sporadic. A handful of times a year, at MOST. As I’m oft to pronounce, it would only be from one end, thankfully. As far as the porcelain bus was concerned, I was a driver rather than a rider.

So IBS flare-ups would come and go, every several months. For awhile it was even over a year between symptoms. No biggie. It was just something I lived with when it happened. I suppose you could say the only lingering after-effect I had was a “slightly” sensitive digestive tract, but if you think this was going to stop me from my love of Thai, Indian, Caribbean, or spicy cuisine of any kind, welcome to Downtown Hokeyville. Population: four. (?)

So cut to late January 2011. I embark on this diet and fitness regimen to combat being overweight, anemic, and lethargic. Five days a week of strict healthy dieting, six days a week of exercise, and one day of no restrictions (but no going crazy either). Over six months I dropped about 65 pounds and became fit and active, and somehow became a serious runner as well. I started running to lose weight and become healthy; I stayed a runner because I found a safe, healthy obsession that kept me mentally balanced and focused. And the funny thing was, was that during that entire year… I didn’t have a single IBS flare-up. No sudden vomiting. No upset stomachs. No acid reflux. Smooth sailing across the board.

The soundtrack to my intestinal health!

The soundtrack to my intestinal health!

Healthy eating and regular exercise… hmm funny how that actually does a body good.

So bla bla bla, I’m feeling healthier, looking better (which compared to how I looked in 2010, was REALLY easy to accomplish), living a more active lifestyle, and actually improving my digestive issues to the point where I forgot I actually had any. Why, I was at my fighting trim and prime! No sugar tonight in MY coffee.

Fast forward a bit now… to early June, 2013. I’ve started my summer training for the upcoming Disneyland event on Labor Day: running regularly, eating healthy, keeping active… the whole knish with a side of schmaltz and gribenes. I start to notice that, for some reason, I’m going to the bathroom a lot more than usual. Odd. Of course, it’s not really much to be alarmed about. My metabolism is working harder, so I’m processing faster. It happens.

Nothing to be alarmed about at all… until I notice the blood.

OK yeah not QUITE at Shining levels...

OK yeah not QUITE at Shining levels…

NOTE: Here’s where it starts to get more frank and detailed. Prepare thine self…

A warning sign, to be sure, but again nothing to immediately freak out over. Could be a hemorrhoid. Or just something bad I ate that day. And it’s only blood mixed in the stool, not actual blood droplets coming out directly from me. So I watch my diet and move on… until I start to notice streaks of white in my stool as well. Mucus or pus, maybe. Definitely NOT healthy.

And full-on blood droplets joining them. I’m actively bleeding.

Something is very definitely wrong.

Meanwhile, the frequency of my bathroom breaks is increasing. I’m constantly excusing myself wherever I am: at work, out to dinner, visiting friends and family, at the movies. Everywhere. The frequency increases, but as the frequency increases, the productivity of my bathroom breaks diminishes. In other words, I feel like I have to go badly. Like a sudden diarrhea attack. Then when I’m ready to relieve myself… nothing. Nothing at all. You can feel it in there, but it’s not coming out. Something’s keeping it back.

The pain is excruciating sometimes. Mostly gas, bloating, and cramps. I’m gaining weight despite my diet and exercise… and let’s talk about exercise. When I’m treadmill running at the gym, I always have to go before and sprint to the bathroom afterward. Outdoor running is even worse. I went for an 8-mile sojourn and had to stop at (in order) a gas station, a Winn-Dixie, a Pollo Tropical, and another gas station. Suddenly. Urgently. I can’t keep any kind of momentum going.

Eventually it gets to the point where I can’t exercise at all. Period. The stress of any physical activity results in my immediately needing to use the bathroom within minutes. The ensuing cramps make any running or activity physically painful. After the Neon Vibe run in late June — during which I “leisurely” walked the entire distance with friends, trying to hide my discomfort but not feeling pain, at least — I had to give up all exercise until I found out what the hell was going on with me.

An approximation of my Neon Vibez 5K walk...

An approximation of my Neon Vibez 5K walk…

At first I thought it was a blazing return of my IBS, with a vengeance. It had to be, right? I called my gastroenterologist’s office and made an appointment. This was early July, and Boots and I were due to fly up to Vermont in two weeks for a family vacation. I didn’t want my condition to keep me from enjoying our trip. I wanted to keep training. I needed to exercise. I needed to be able to go places without rushing to the bathroom every 20-30 minutes.

I needed to get healthy.

On Friday July 5th I went to Dr. Railey’s office for my appointment. I discussed my symptoms with him, and we discussed what possible conditions they might arise from. It could have been IBS, potentially colitis, maybe even Crohn’s… or worse. What came next was to be expected; the Colonoscopy was scheduled for Tuesday, July 9th. I’d had two colonscopies before, so I knew what was going to happen. I’d go to the surgical center, get knocked out, wake up 30 minutes later with a sore bum, speak to the doctor for a few minutes, then be driven home by Boots. Anyone who’s ever had the procedure done knows that it’s easy peasy for you, because you’re out the entire time.

It’s the prep the day before that is close to murder. Twenty-four hours of no food, fluids only, and CLEAR fluids at that… plus an entire evening of cleansing. Nine doses of laxatives served with 64 ounces of Gatorade, a cocktail you consume in 8 ounce servings over the course of two hours starting at 5PM. You then spend the next four hours hanging on for dear life as your entire digestive tract is turned into a Human Garden Hose.

More fun than a barrel of spider-monkeys!

The important thing I took away from the cleansing is that I could immediately feel something was wrong with the exit process. When I had cleansed before, everything just flew out of me without impedance. This time around, something was interfering; almost as if it were slowed down, coming out at a slight angle. I could feel the inflammation. Based on my research, I felt it had to be colitis. But I needed to know for sure.

Tuesday couldn’t come fast enough. My procedure was scheduled for 8AM. I woke at 4 that morning, drank a bottle of magnesium citrate as my last step of preparation. I wasn’t due at the surgical center until 7, so I listened to Spotify and played some video games to pass the time. The magnesium citrate is a diarrhetic, so I also spent several more times heading back to the bathroom. There was pretty much nothing left in me anyhow. Finally we left the house at 6:45 and got their right on time. I registered, paid the surgical fees (I have health insurance with a deductible, with secondary insurance to cover the gap later on. I’m still waiting…), kissed Boots goodbye, and headed inside where the magic happens. In no time at all I was in a gown, lying in a stretcher, IV inserted, and spent the remainder of the time waiting for the procedure to begin.

"If you get to the end zone, act like you've been there before, n'est–ce pas?"

“If you get to the end zone, act like you’ve been there before, n’est–ce pas?”

There’s one thing I do like about the room where they perform all the gastric procedures. There’s always a radio playing easy listening soft rock in the background; as the anesthesiologist started the process, I started singing along with The Little River Band. That managed to crack a smile out of the cute but dour-faced Indian nurse next to me. And then I was OUT.

The anesthesia hit me REALLY strong. I remember waking and speaking with Dr. Railey, but I don’t remember any of the specifics of our conversation. Basically that (a) I indeed had ulcerative colitis (pending pathology results for confirmation), (b) it apparently was localized only in the sigmoidal area (basically around the exit chute), (c) he gave me a prescription for Delzicol, an anti-inflammatory drug, and (d) I had to make a follow-up appointment in two weeks. The rest of the time was basically a blur until I was in the recovery room. I could barely walk on my own. Boots and a nurse had to help me to the car. You are strictly prohibited from driving and encouraged not to go to work that day. I was planning on going to the office anyhow, but I was so out-of-it that I phoned the office and went straight home. Well, not STRAIGHT home. I was hungry, so Boots drove me to a McDonald’s where I consumed some McCrap before getting back to my humble abode.

So it was pretty official. Ulcerative colitis. Man.

Here’s what I knew about UC: it’s classified as an Inflammatory Bowel Disease (IBD). It is similar to (but not as severe as) Crohn’s Disease. No one really knows what causes it: it could be diet-related, genetic, driven by stress, environmental… who knows. It is common among people with Ashkenazic Jewish heritage (which is half of my family tree), but nobody else in my family has it. The body’s immune system is tricked into believing that the colon lining is an invader and attacks it accordingly, resulting in massive inflammation, blockage, malabsorption, sometimes even fever and joint pain. There is no cure. Flare-ups can occur suddenly and capriciously. Initial treatment includes mesalamine to start, which can move up to prednisone (steroids) for more serious cases.

Did I say there is no cure? There is actually one known cure. Complete removal of the large intestine and an ileostomy. In other words: living with the pouch.

All this is fine and good, but where did this leave me?

After no pharmacy in town stocked Delzicol (are you kidding me??) Dr. Railey’s office gave me a one month supply of samples. Three days later, Boots and I boarded a flight to Boston for our vacation. My symptoms were still strong. I had to use the bathroom twice before we left the house, once at the airport, twice on the plane, and once when we landed. We drove over to my alma mater Brandeis University in Waltham, during which time I had to rush back to the bathroom three more times (we were only on campus for about an hour). That’s a total of nine times before 11:30AM. I think I hit a new record.

That said, we had a phenomenal time during our trip to New England. My cousin was celebrating his birthday in Vermont. We ended up staying at a fantastic bed & breakfast (big shout out to Greg and Sarah at the 1824 House), experienced some beautiful countryside, ate and drank heartily from some of the most delicious organic and locally sourced cuisine around, attended a local farmer’s market where I tried some grilled yak and bought some local goat cheese, pickled garlic, and maple peanut butter. I would have stayed longer but my symptoms flared up pretty bad that day; Boots and I ended up leaving earlier than I would have liked. The birthday celebration that night was fantastic, featuring a performance by Livingston Taylor to benefit a local charity supporting music programs and providing instruments for local students. I also got to spend some quality time with my sister, her husband, and my two beautiful nephews. Leah lives out in Northern California, so I don’t get to see them all that much, so it was great to have some chill time together.

By Sunday I was feeling a little better. Boots and I drove up to Montreal for the day, which is a 2.5 to 3 hour drive. I think I only had to stop once on the way up and once coming back. I hadn’t been to Montreal before, so for a first timer it was quite the endearing experience. While we only had a few hours to kill, we managed to tour Notre Dame Cathedral, explore the old city, have lunch at a local cafe, and sampled gelato and, at long last, poutine. As it turns out, I am not a fan of poutine. It’s french fries with gravy and curdled cheese. Blerg. Boots liked it, but it’s not my thing.

Anyhow, my symptoms were starting to improve. Still not doing all that great, but better. By the time I came home, the worst of them had passed. However, the following weekend, the morning after an evening at High School Reunion (25 years… I hate doing the math), they came back with a VENGEANCE. I had enjoyed quite a bit of alcohol the night before, and hadn’t eaten all that much. I thought I was just hungover. But no. The blood, the cramping, the sudden and immediate urgency to rush back to the bathroom every half-hour had returned.

So I had to make a painful but necessary executive decision. As of Sunday, July 21, 2013… I have given up all alcohol. TEMPORARILY, don’t get nervous. But it became obvious to me that, until I felt comfortable with my health and how I felt, there was no sense engaging in anything that could throw back any potential progress I was making.

You know what’s a funny thing? When you tell people that you’re not drinking, or don’t drink, or have given up drinking (even temporarily)… they always momentarily pause and look at you funny while searching for the right words to say, as to be supportive without offending. DUDE! My decision had nothing to with any moderation or abuse issues. I’ve always been a social drinker (although some nights, more “social” than others). I love my Belgian ale and my Angel’s Envy bourbon and my Hussongs Reposado tequila, but if I found myself with enough time and inclination to drink regularly on school nights, there’s something wrong in my life. So becoming a Temp Teetotaler is no big deal, except sometimes when going out on weekends for dinner or karaoke at the pub. I can live with it.



So what happens now?

I met with Dr. Railey again and we discussed the pathology results and reviewed images from the colonoscopy. My ulcerative colitis, thankfully, is on the mildest edge of the spectrum. Only the very end of the colon was affected, but with two light “patches” in the middle and upper portions. The mesalamine seems to be working, so we’re continuing with that while upping the dosage a bit. I have moments of cramping and discomfort, but I’ve become more “regular” with my bathroom routine. I even was able to start working out and running again this week. It hasn’t been pretty. I used to take a week off here and there over the past few years while training. That first run afterward was always creaky but I could always bounce back on the wagon quickly. This time around, I hadn’t been able to run or exercise for a MONTH. My first run last Tuesday felt disastrous. I thought I could do an easy 3-miler, but after two miles I felt winded, tired, sore… as if I had never run a day in my life. Six months earlier I had run a full 26.2 mile marathon. I’d run two half-marathons and 16 miles as part of a 100 mile relay since then. Plus my usual training runs in between. All that felt like it had been accomplished by someone else.

I felt weak, tired, and out-of-shape.

But I ran anyhow. I did the whole three miles, then I did four miles two days later. That time it felt better. Still nowhere near where I was, but I never felt demolished either. I plan on doing a 30-minute “fun run” with the Running Group on Saturday, followed by maybe 6, 8, or 10 on Sunday, depending on how I feel. I have four weeks until the running event at Disneyland on Labor Day weekend, so I need to get as fit as I can before then without overexerting myself.

In the meantime, I have to take my meds, eat healthy and normally, and listen to my body. I’ve also been looking online for support forums, resources, and blogs about both UC and running with UC. While there are many I follow, some that have really stuck with me (that I highly recommend) include:

  • Ali On The Run – A blog from a runner living with Crohn’s Disease. One of the most brilliantly written, entertaining, heartbreaking, and inspiring missives on life as an athlete who strives to rise above the challenges her body provides.
  • iHaveUC – Billed as “an international community of people sharing stories of ulcerative colitis”, this site was really a great source of comfort and community when first learning about a confusing condition that stays with you for life.
  • Athletes and Runners with Crohn’s, Ulcerative Colitis, & IBS – A Facebook group that utilizes social media to bring together like-minded runners and athletes suffering from (and living with) IBS and IBDs. This is a relatively recent group that was created just as I was looking for something that dealt with both UC and running.

And that pretty much takes me up to today. How this condition will affect me in the future, only time will tell. I’m on mesalamine for the next few months. I will probably be making alterations to my diet, but to what extent is to be determined. I could go days, weeks, months or even years before the next flare-up… or it could happen an hour from now. Who knows… the only thing I do know is that I can’t afford to dwell on it. Be mindful of it? Absolutely. I have to be smart and careful, and most importantly cognizant of the signals my body is sending me. But other than that, it’s business as usual. I will keep running, racing, and competing in events. I’ll keep striving to remain healthy and active, but not at the expense of living a fun, happy, fulfilled life.

I am, overall, thankful beyond words. Whatever it is that is causing this condition, my UC is, on the grand scale, pretty mild. People live with IBDs for years, some in agony to the point where it takes over their lives. Unable to work, unable to go out anywhere, unable to eat, or unable to move. Even at the worst of it, I was still able to work, enjoy time with friends and family, go to the movies, travel, and still enjoy life. My condition is not life-threatening or impacting on my life expectancy. My treatment is basically pills — six to twelve of them a day, maybe more, but I’m not requiring prednisone treatment, injections, or anything invasive. Just meds with water that might give me a stomach ache once in awhile, maybe.

So yeah, I’m thankful that this is just a road bump, not a full pit stop, in life.

And while I was typing that sentence, I received a phone call from Dr. Railey’s office. My bloodwork had comeback: completely normal! I was epxecting a drop in my hemoglobin/hemocrit levels — during all this, I almost forgot my battles with anemia! — but everything seems to be copacetic. Huzzah!

Oh, and I almost forgot. For our more senstive readers…

The Elevator Pitch

I had a colonoscopy, I have ulcerative colitis, totally not fun, made it hard to do anything without having to rush to the bathroom all the time, lots of pain and cramps, I’m not drinking alcohol for awhile, thankfully it’s a milder form of the disease, I have to take lots of pills, and I went to a Livingston Taylor concert. Oh, and poutine stinks.

Well, that’s only the beginning of my Ulcerative Colitis tale. Where it goes from here, we’ll find out eventually. I hope you stick around for the rest of the ride. There’s cake at the end of it. Plus a rebate! Here’s the video:

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2 thoughts on “How I came to know Ulcerative Colitis, or: “You’ve had your fun. Now you must drive…”

  1. Ok’ol pal…read it all. Im glad that in the midst of things, you’ve go the mild version. I have a frriend that suffers from Crohns disease. Very difficult. Glad you are well!

  2. Muchos thanks Yoli… despite everything I do feel fortunate. It could have been much, much worse. Thanks for reading! (I do get long-winded at times LOL)

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