New Year Resolution

Amidst the parties, countdowns, and fireworks the tradition of making a resolution on New Years Eve is usually the main topic of discussion on this day. Whether 2007 was a good or bad year for you, like most people, you probably wish for 2008 to be a better year. I love the concept of the resolution because it positions the individual to take charge of a particular improvement to make 2008 a great year. This is so much better than a wish where the result is left to fate.

When making a resolution think what it would take to make it a great year, then choose the milestones to achieve that goal. Finally, resolve what daily change can be made to reach your milestones and goal to have a great year!

Now I just have to do the same for myself ;-)

Happy New Year!!!

Miami Half-Marathon a Month Away

Four weeks from now I will be well into the Miami Half-Marathon. I have been able to keep up with my training despite the cold New England weather. I hope to still make my goal of running 1:34 or faster. The Team Challenge team has done a great job with fundraising. I am on the ‘virtual’ team since I am the only participant in New England and the virtual team is close to raising $200k for IBD research!

Family Rib Night

Last week we started a new family tradition: an annual family rib night! This was an idea I had many years ago, but never followed thru with it until this year.

The idea is to order white t-shirts that say Family Rib Night, the year and location (and of course a cute logo). Next, we all wear the shirts out to a rib house and get a big ol’ plate of sloppy BBQ ribs and dig in. There is only one rule: no napkins or wet wipes! That is why the white t-shirts were bought. Each year we can travel to a new location and enjoy the ribs!

The inaugural event took place at Wes’ Rib House in Providence, RI and, as you can see from the picture, Noi and Jaixai took to the idea very well!

We hope to grow the attendance in future years and try the many great places to eat one of our favorite foods.

Happy Holidays!!!

Got Guts? Armband

In a recent conversation with another IBD patient the CCFA Got Guts? armband came up. I had been talking to this individual for nearly a half-hour about a topic related to my UC before she mentioned that she also had UC. The very next question was, “Do you wear a CCFA Got Guts? armband?” I responded enthusiastically, “Everyday.”

I love the idea of the armband! It not only reminds me that I should be comfortable about my disease, but also spreads awareness of IBD. Wearing an armband of any color other than yellow (LiveStrong) frequently draws people to ask what is that band for? I am happy to talk about my UC and discuss the many people afflicted by IBD. I view this as a mechanism for the IBD community to gain acceptance and comfort in today’s society.

I hope everybody afflicted with IBD sports their armband and strengthens the IBD community.

No Apology Needed

A few days ago Jaixai, my 2 year-old daughter, said something that made me conscientious of what I say around her. Two year-olds are good at forcing self-reflection, as they will repeat nearly everything you say, even if you only say it once. In this particular case it made me reflect on how I view the impact my UC has on my family.

The statement Jaixai made: “Daddy, I have to go use the potty. I’m sorry.”

Like any recently toilet-trained child a trip to the washroom is always announced. However, I found it odd that she apologized. I first wondered if I had seemed inconvenienced when she went in the past. After some thought I realized that it was probably because I apologize myself anytime I have to use the washroom out in public (usually the reason for apology is because she has to join me). She was simply repeating what she had heard me often say.

In the past, when I was experiencing flares, I felt that I was inconveniencing my family due to frequent washroom visits (in some cases I was inconvenient - although my family has always been supportive). This is when the habit of apologizing for washroom visits developed and, regardless of frequency, the habit stuck.

Now that I am in control of my UC, it is not necessary for me to apologize any more than it is for Jaixai to apologize. I will now be more aware of my use of apologies; after all, I am human and must occasionally use the washroom.

My Challenge

As I begin my training program for CCFA’s Team Challenge I needed to set my personal goal. This is necessary so that I know what pace I should be doing my training runs at and it helps to motivate my training.

My goal: to complete the Miami Half-Marathon in 1 hour and 34 minutes.

This is a high goal on many levels. To start with it is my PR (personal record, the fastest I have done this distance). The race is only 6 weeks from now, so trying to obtain a PR with such short training time will be a challenge. However, simply achieving a PR is not the reason I chose this goal.

I last ran this time in 2002. A time when I was is great physical condition as a carryover from my NCAA track career and long before I ever had any UC symptoms. To accomplish my goal would be to prove that I am in the same physical condition now as I was in before experiencing any UC symptoms.

This goal will motivate me in the next 6 weeks of training and push me towards positive results in Miami.

Team Challenge Training Begins

I have recently decided to participate in the CCFA Team Challenge and run at the Miami Marathon in January. This is another great CCFA initiative and more information can be found at www.ccteamchallenge.org. This is a great way to raise money, awareness and community for IBD.

Since this is only a little more than a month away I decided to hit the road and start my training yesterday with an 8-mile tempo run. My body is in a lot of pain today, but it felt great to get back on the roads. It has been more than a month since I have done a hard workout due to busy work and travel schedules.

For the Miami race I am a member of the 'virtual team' as there are not enough members in the NE area. Any other Team Challenge members out there? I would like to discuss training with UC with anybody.

Great contest for those affected by UC!!!

The CCFA has launched a new essay contest sponsored by P&G Pharmaceuticals to honor those affected by UC (patients, family/friends and healthcare providers). I encourage all of this blogs readers to submit an essay! Here is the press release:

CELEBRATING UC SUCCESS ESSAY CONTEST SEEKS INSPIRATIONAL STORIES OF PEOPLE LIVING WITH ULCERATIVE COLITIS (UC)
Nationwide program honors, educates and inspires those affected by ulcerative colitis


New York, NY - December 6, 2007 – For the more than half a million Americans living with ulcerative colitis – a painful and unpredictable disease of the digestive tract – and the families, friends and health care providers who support them, leading a normal everyday life can be a challenge. To recognize their achievements, the Crohn’s & Colitis Foundation of America, in partnership with Procter & Gamble (P&G) Pharmaceuticals, have launched Celebrating UC Success, a program that seeks to honor, educate and inspire those affected by ulcerative colitis through the motivational words of those who are successfully living with the disease. To encourage the sharing of stories, the program includes a contest which is open to all touched by ulcerative colitis, including patients, family, friends and health care providers.

“Ulcerative colitis can be a very challenging and at times embarrassing condition, and we hope that through the sharing of success stories, patients, their families and health care providers can learn from and inspire each other,” says Kimberly Frederick, Vice President of Patient & Professional Services, Crohn’s & Colitis Foundation of America. “The Foundation is pleased to partner with P&G Pharmaceuticals to launch Celebrating UC Success and recognize those who have inspirational stories to help others meet the challenges of their disease. We really want people to know they are not alone in dealing with this condition.”




Strength in sharing
Many patients, especially at initial diagnosis, find it difficult to talk about the disease with family, friends and coworkers. But some people living with ulcerative colitis say that being open about the condition is an important first step in taking control.

“When I was first diagnosed, I was shocked. Here I was, a grad student, a new dad, an active athlete – and I didn’t know if ulcerative colitis would take all of that away from me,” says Josh Reineke, a UC patient who is also a nationally competitive triathlete. “A friend of mine confided in me that he too had the condition, and my world just opened up. I saw fewer limits and more possibilities. Through the support of my family, sticking to a healthy diet and taking my medications as prescribed by my physician, I am living my life beyond my UC.”

Today, Josh works with gastroenterology research leader, P&G, to help educate the ulcerative colitis community about the condition and how he manages his disease to reduce its impact on his quality of life.

“We believe ulcerative colitis success stories can help inspire patients to work with their health care provider to gain better control of their disease,” says Dan Hecht, General Manager - NA Pharmaceuticals of P&G. “It is important that we empower UC patients to achieve their personal goals – whether it be to make it through the day at work or participate in a triathlon. We’re thrilled to be helping bring this program to fruition.”

About the Contest
Entrants can submit essays of 200 words or less for one of three categories: UC Patients, Supportive Family Members/Friends and Health care Providers. Grand Prize winners will receive a trip for two to the Foundation’s National Advocacy Conference “IBD Day on the Hill,” to be held in May 2008 in Washington, D.C. Finalists from the Celebrating UC Success program will be recognized during a reception as individuals who have taken significant steps to manage their disease and who are inspiring to others. Every applicant will be recognized for their entry in the Celebrating UC Success contest and will receive a complimentary one-year membership to the Foundation.

Information about the Celebrating UC Success program and entry forms for the essay contest are available at physicians’ offices and www.ucsuccess.org.

Been a long time

The past few months have been both very exciting and very busy. I have finished my triathlon season, travelled with my family to Taiwan, participated in two CCFA Guts and Glory walks (NE and Westchester chapters), and have been traveling a ton for work and faculty interviews (I have already been given a few offers!). I even went to Austria for a week to learn new surgical techniques.

It has been very important for me to stay in control of my UC during these critical moments in my life/career. Often the circumstances were less than ideal, poor eating schedules, little sleep, high stress, little time for daily breaks, no restrooms in close proximity. However I have been fortunate to progress through this period without any disruption from my UC. Usually there are a number of things that I do to ensure that I stay flare free, but many of these were impossible given the setting. However, I was able to stay flare free by doing two critical things regardless of circumstances: take my medicine as prescribed and stay away from foods that I knew from experience to avoid.

I will begin to be more active on this site again to share some of these experiences and current thoughts.

Normal?

A question that I have asked myself ever since I was diagnosed with UC and began treatment is, what is normal? Or how should I feel? I did not begin to experience symptoms of UC until I was 24 years of age. Having gone so many years symptom free (~85% of my life thus far) it may seem strange that I cannot even remember what a normal bowel movement is. This is worth thinking about since determination of how well a treatment is working often uses normalcy as its standard (i.e. Are your bowel movements normal?).

After going through many months of false diagnosis followed by an extreme severity of the symptoms (often visits to the emergency room), I cannot remember what is normal. Naturally, I asked a friend of mine with Crohn’s if he knows what exactly normal is like. It is even harder for him to imagine since he has experienced symptoms his entire life. When talking to my doctor I never use normalcy as the standard, but rather discuss what is better/worse since last treatment changes and what is tolerable and intolerable.

I often discuss in this blog that I have been flare free for many months. I think of a flare as when I am experiencing intense, debilitating pain accompanied with bleeding and so frequent trips to the restroom I cannot easily do normal life activities like eat a meal, sleep, etc. Saying that I am not experiencing this does not mean that I do not have any symptoms. I still have the occasional abdominal pains and take frequent trips to the rest room when I first wake in the morning.

Normal bowel movements? I guess I have them part of the time, but I do not know if I have just grown accustomed to the less extreme symptoms or if it truly is normal. Regardless, I do know what it means to live a normal life and my treatment has achieved this.

National Tour

The trip out to the USA Triathlon National Championship was quite an experience (a stressful one). Due to bad weather all along the east coast my original flight was cancelled. This resulted in my journey to Oregon taking 2 ½ days as I went to a total of 6 airports. I did finally arrive in Oregon the day before the race, but my luggage did not arrive until late that afternoon. This did not give me much time to assemble my bike, check-in to the race, check-in my bike and view the race course. Not to mention that I needed to eat regular meals so that I could have good nutrition going into the race. Thankfully I did not have any problems with my UC. That would have made for a much worse experience given that I spent 2 nights in airports without any luggage.

On the bright side, my trip to the National Championship included a national tour. In the course of a few days I flew over the New York skyline and saw the Statue of Liberty, flew over Washing DC and the many national monuments, flew over the Great Salt Lake and salt flats, and saw the sunset in the rocky mountains. The trip was capped off with a good view of firework shows in New England. It actually, despite the circumstances, was a great national tour.

Return to Cincinatti (kind of)

Following the disappointing performance at the Triathlon National Championship I requested an earlier flight so that I could just get back home. This change in flight plans made for a connection in Cincinnatti, Ohio. This made for a great trip home not only because I got home a day early, but also because it created a great reflection, discussed below, that recovered my ego after the bad race day.

As I flew into the Cincinnatti airport I started to think about the last time that I flew into that airport. It was back in January and I was going to Cincinatti to meet the Asacol team for the first time (Proctor and Gamble is headquartered in Cincinnatti). Most of the flight I was thinking over the race with disappointment, but as I flew into Cincinatti I began to think about how I felt on that last trip into the city. I was full of nervous energy and excitement. I could not believe the opportunity that Asacol was giving me in sponsoring my racing season and starting programs utilizing my story. The excitement of that time quickly returned to me and my outlook on the season changed. I realized that there was no use in sulking over the race. I have been given a great opportunity and I am going to continue enjoying it.

USAT National Championship

There was one race this season that I was particularly looking forward to and gearing my training towards: the USA Triathlon National Championship in Portland, Oregon. The race took place on June 30th. I had hoped of placing in the top twenty of my age group and qualifying for the Triathlon World Championship in Hamburg, Germany. Unfortunately the race did not go as well as planned and I finished second to last in a time of 2:39:33. This time was 31 minutes slower than my goal and 9 minutes slower than my first Olympic distance triathlon in 2005!

I was a little slower on the swim than I wanted, but still had a reasonable time to meet my goal. The bike went pretty well, but on the run I fell apart. It was all that I could do just to finish the race. This was particularly frustrating since my run background usually means that I make up a lot of time on the run, not fade to a slow trot. There may have been a number of factors that influenced this poor performance (such as a tough schedule in the travel days leading to the race), but I do not think it is an excuse. I was not mentally prepared for the challenging race course.

Regardless of my performance, I enjoyed the experience. It was an amazingly beautiful and well laid out race course. Not making my season goal is truly frustrating (particularly since it was missed by a huge margin), but I only look forward to the next three races of the season. They cannot all go well. I am just happy that this sour taste will not be the end of this year’s season.

Asacol Success Stories

The newly designed Asacol website (www.asacol.com) has a few UC patient success stories that are very encouraging to read. Recently, they have posted a story about me [link] and the “Going the Distance with UC” program [link] that we have partnered to form. Check it out and make sure to read Larry’s and Angela’s stories a well. It is great to read about how others have overcome the challenges of UC. I am sure everybody with UC can relate to at least one of these stories.

Humility and Adversity

Having UC and being a triathlete I have learned many lessons in humility and dealing with adverse situations. Here is one area that those two roles come hand-in-hand. I am not sure if the triathlon training and racing has helped me deal with humility and adversity that comes with UC or if it is the other way around. My UC symptoms started around the same time I started my triathlon training (I believe this is just coincidental). Regardless, each situation is helped by each other.

Triathletes, by the nature of the sport, face much humility. A friend once told me that a triathlon is the best place to look for a girlfriend: you know what you are getting. After all, everyone is practically naked. Additionally, everybody’s nervous ticks are on display. Anybody with UC knows, and fears, humility. From my experience with humility I know that humiliating events are temporary and are often forgotten. Besides, nearly everybody has faced humility at one point in their life; especially if you are a parent!

The condition of UC is, in its own right, an adverse situation. It can be very mentally debilitating if you do not learn to deal with the adversity. There are many ways that people can and have overcome the adversity of UC (see some examples at www.ccfa.org and www.asacol.com). A positive outlook is needed to be able to move on. Triathletes face multiple types of adversity (on a lesser scale) at every race and most training days. Changes in weather conditions, water conditions, a flat tire, an injury or cramp. If a single event swings your mood to a negative side you will be pulling yourself out of the race. However, for both UC and triathlon, caution needs to be taken to not cross the line of over-pushing.

Over asking

Being open about UC has been one of the best things for me therapeutically, but everything comes with a drawback.

One negative thing about being open with others about my UC is their over asking. I know that it is only out of concern and has every good intention, but it is annoying. By over asking I mean people constantly asking me if I need to go use the restroom, is it ok for me to eat this, or really any question that is asked solely because they are aware of my UC. The way I feel about it is that I am a grown person and I will handle my UC myself. I know that if I need to use the restroom, I will go. If I cannot eat something, I won’t. I know people are only being nice, but I still do not like it because it draws attention to my UC. At times, this can have the effect of making me feel outcast.

However, there are other times when I am thankful that people ask. For example when going to a dinner party, if somebody asks it is just polite. This does not bother me because even if I did not have UC people may ask this to ensure there are no allergies, for example.

Over time I have learned to not let over asking bother me as much and be more relaxed about it. It is only an annoyance, but not something to get upset or stressed over. And, I cannot blame people for doing it out of kindness. Before having UC I would probably do the same thing. Now I know that even if somebody is open about a disease not to ask questions that may single them out.

Bathroom Walk

Particularly when I was experiencing a flare, I had many problems with urgency. It was always a challenge to get to the restroom in time. When the urgency arose I remember that I always wanted to just get up and run as quickly as I could, but that plan often backfired. Running just gets things moving faster! The solution: I developed what I call the bathroom walk. It is a lot like speed walking, but with much shorter strides. I got me there quickly and in time, usually! It is a little embarrassing if others see me walking this way, probably looks like a fast duck-waddle to an onlooker. Oh well, it could have been more embarrassing if I did not employ this technique.

Comfort Zones

I just learned of a book that is produced by the Asacol brand that is a traveler’s book detailing where public restrooms are and even ranks them by cleanliness, etc.! The title of the book is “Comfort Zones.” In yesterday’s blog [link] I suggested that somebody should do this and I am excited that somebody actually did! In fact, I will be handing them out at the Triathlon National Championships in Portland, OR. I will update this post with more information pertaining to this book at a later date.

Boston Public (Restrooms)

So anybody who has UC knows that when the time comes to use the restroom there is not always one readily available. I was visiting Boston one day and experienced just how hard it can be to find a restroom even in a large, highly developed region like Boston (it probably would have been easier in an underdeveloped third world nation).

I do not like to take chances once I feel that I need to use the restroom and begin the search process immediately. My mom and wife were with me and they wanted some Starbucks coffee. I knew of a Starbucks about two blocks away and, thus the journey began. It took a little time to go those two blocks because my 2 year-old daughter wanted to walk. When we got to Starbucks they said they did not have a restroom even for customers. I saw that there was a Dunkin Donuts across the street and just left my family at Starbucks to go use the restroom there.

Dunkin Donuts has often been my refuge since I have had UC. They are great: always have restrooms, usually do not mind if you just come to use the restroom, usually they are clean, and, in New England, there is a Dunkin Donuts every two street blocks. Well, I found the one (and maybe the only) Dunkin Donuts without a public restroom. It is in Boston across from a Starbucks.

I decided to walk further down the street to find a restroom. I stopped in a University dorm and could see a restroom, but the guard monitoring the hallway to the restroom had no sympathy for me and instead gave me directions to a public restroom in a nearby mall – three blocks away. Fine, I went to the mall. I forgot to mention that this was a Sunday morning and when I arrived at the small shopping mall the restroom was locked and had a sign on it to get tokens from a retailer. No retailers were opening for another hour. Tough luck.

By now I was a few blocks from a hotel that I was familiar with and I went into the lobby to use their restroom. Of all days, they had a plumbing problem in the men’s restroom, so I went to ask the attendant at the desk if I could use the women’s restroom. He asked, “Why don’t you just use the restroom at the Starbucks next door.”

And yes, finally, this restroom was available. As I sat in the restroom I thought, if an employee asked that I buy something to use the restroom, would they believe that I have a Starbucks caramel apple cider waiting for me across town at another Starbucks? Somebody should write a travelers’ book for the porcelain bound so that finding a restroom while traveling does not turn into a wild goose chase.

Last Sunday's New York Times

On the front page of last Sunday’s, June 17th, New York Times was an article about a technology that I helped to developed and am an inventor on one of the patents. The story, “Erasing Tattoos: Out of Regret or for a New Canvas,” [link] mostly discusses the current tattoo removal process and need for a better solution. While consulting for Freedom 2, I have worked on a solution – described in the article – that will be hitting the market this fall. The technology is a new type of ink comprised of tiny spheres that contain dyes that can be easily removed after only a single treatment. For more information visit the Freedom 2 website [link].

New England Triathlon

On June 10th I had my first triathlon of the season; and my only triathlon before the National Championships. It was the New England Triathlon in Worcester, MA and consisted of a 0.5 mile swim, 12.8 mile bike and 3.2 mile run. I was feeling pretty sick (sore throat and headache) that morning and did not really feel like doing a warm-up. So instead I just took my time setting up my transition space and sat in the shade until the race started. This also gave me the opportunity to speak with the most inspirational, and well-known, amateur triathletes: Dick and Rick Hoyt. If you do not know their story visit their website [link] and you will be inspired, even if you are not an athlete.

The swim was in a calm lake with warm water, but I wore my wetsuit so that I could practice the transition into the bike after the swim. I just stayed relaxed for the swim and did not try to race and that strategy worked well. I came out of the water feeling good and ready to get on the bike. I found out later that I was the fourth one out of the water and it was my best swim performance ever!

The bike went very well also, well, except for the first mile or so. As I was cycling away from the transition area I began to put my shoes on and mistakenly pulled the Velcro strap out of its loop. Try threading a needle while moving 20 mph! I was able to get it within the first mile but did get passed by three other cyclists. After that, the bike portion was smooth and I was able to hold a strong position.

The run is always my favorite because, given my running background, I am faster than most of the other athletes and can reel in each one who was faster on the bike. I was fourth to cross the finish line and the third athlete in my age group. I was very pleased with this race and credit my success mostly to staying relaxed. Hopefully I can control my nerves at the National Championships and stay as relaxed.

Weight shifts

I lost a total of 33 pounds in the first two months after I began to experience symptoms of UC (No, this is not an endorsement for a weight loss program and was rather unpleasant). As an athlete I was already slender and perhaps a little underweight to start with. This large amount of weight loss left me feeling weak and frail, as much of the weight lost was muscle mass.

For this reason, I have kept a close watch on my weight and use it as an indicator of how well I am controlling my UC. There have been a number of fluctuations in my weight and it has been difficult to determine whether it is due to improvement/worsening of my UC, medication side-effects (particularly with steroid therapy), dehydration from UC or training, or just a result of my training.

My weight has rebounded about 15 pounds in the past two years and is about 15 pounds away from my pre-UC weight. I expect that I am near a plateau in my weight gain and would feel that I have successfully controlled my UC if my weight maintains its current level. It has been very difficult to gain weight and my weight has often taken sudden shifts making the process seem like one step forward, two steps back.

Triathlon training has certainly had a large impact on both the gain and loss of weight, but I also contribute the rebound in weight to being disciplined in my UC treatment such as watching what I eat and taking Asacol regularly.

UC Fashion

Generally, I dress for comfort (a true graduate student) and have found that some details of my style of dress have changed over the past two years as a direct result of my UC. And no mom, I do not mean how my cloths are loose due to weight loss ;-). For instance, I rarely wear a belt. Prior to experiencing UC symptoms I often wore a belt because I believed it looked nice and prevented my shirt from coming un-tucked in addition to its purpose of keeping my pants up.

When I was in the height of my symptoms I stopped wearing a belt, well, because it was keeping my pants up. I had many problems with urgency and a belt was just one more thing that got in the way and slowed me down in the rush to the toilet. Besides, at that time I had no control over my UC and rarely left the house and did not care much about my appearance.

As my symptoms improved, I refrained from bringing the belt back into my daily attire; a little because of the fear of an urgent need to use the restroom, but also because while sitting the belt was uncomfortable. Belts have a tendency to push on the lower abdomen when in the sitting position and this, being the location of most of my pain and discomfort, only added more discomfort.

Despite being nearly symptom free, the only time I wear a belt is when, in a fashion sense, it is truly needed. This has become my fashion and is a direct carry-over from my UC conditions. One belt that I never stopped wearing, however, is my number belt for triathlon races.

A Few Changes

I have made a few changes to my 2007 race season schedule. I have added a few races and dropped one due to a conflict. I will not be doing one of my most favorite races, the Falmouth Road Race.
I have also added a link to Endurance Planet on the Favorite Links page. Endurance Planet is a daily podcast relating to endurance sports and is a great resource for triathlon tips through the experience of other triathletes, distance runners, etcetra.

Surprise (1-day) flare

It has been more than 3 months since I have experienced my last flare-up of UC. From my experience with UC I have found that flares tend to arise suddenly and then take many days or weeks for the symptoms of intense abdominal pain, bleeding and frequent-uncontrollable bowel movements to gradually subside. This trend has made me realize the importance of discipline in handling UC. I want to have control of my UC and as a result I maintain a disciplined diet, take my medication as prescribed and make efforts to reduce stress.

Despite being able to control this most common type of flare, I have experience a different type of flare that I have yet to understand. I call it the surprise flare as I can never really understand what caused the flare. These flares seem to occaisionally come despite having a careful diet and sticking to my medication. They also seem to only last a single day or even just a few hours, but isolated by weeks or more from any other symptoms. This is an aspect of frustration I have with UC; it can be unpredictable. Even though I have been able to control and prevent the most problematic symptoms of UC, it seems that I get these surprise flares as an occaisional reminder that I have UC.

Although I have been flare-free for many months, I know that I must stay disciplined with my diet and medication to prevent symptoms. Perhaps this long-term discipline is what has kept the surprise flares away over the past months.

Face of Asacol

I have been very fortunate this year to have the Asacol brand sponsor my athletic season. At all my races I will be wearing a jersey with the Asacol logo on it. In my first race a few individuals asked me about Asacol and I met another UC patient, as posted in an earlier blog [link]. This will hopefully spread awareness of UC and inspire other UC patients to keep an active lifestyle. Additionally, the Asacol brand will be donating money to an organization (such as CCFA) based as a per-mile amount during my competitions this year, ~$15,000! We have also started an achievement award for inspiring UC patients, family/friends of patients, and health care providers. This will be announced later in the year.

Working with the Asacol brand on these initiatives has provided me with an extraordinary opportunity that patients of any disease would love to have. I have been able to meet the individuals who work behind the Asacol brand. Not knowing what to expect I was pleasantly surprised by the atmosphere that I encountered. The faces of Asacol were all very friendly and have fostered a family-like environment in which they accepted me with open arms. What I found most comforting is the true interest in, and care for, the UC patient that was possessed by all members of the Asacol family. It was the furthest thing from the 'big-pharma' conception of a money-hungry business turning a profit from a patients need. Instead, they wanted to understand the experience of UC patients with the desire to improve that experience in any way possible. They were also excited to pursue opportunities that spread awareness about UC and make dealing with UC easier. Check out the Asacol.com website to learn more about UC, other UC patients, and initiatives that the Asacol brand are undertaking.

Dave Zucconi 5k - mile 509

This past weekend I decided to run a local 5k road race. A week earlier I ran into my former track coach and he suggested I run in a race that he was organizing. Knowing his personality I perceived this as a "lets see what you have" dare. This was only one of the reasons I had to do this race.

A second reason was that the race was a memorial run for Dave Zucconi, a former athletic director at Brown University, who lost his battle with cancer five years ago. I may not have known it at the time, but Dave's commitment to providing opportunity to athletes from 'disadvantaged' backgrounds was a pertinent reason I was able to make the decision to come to Brown University as an undergraduate (a decision that has now shaped my life). I did not know him well, but always enjoyed his welcoming face in the hallway. Honoring him in this race was my pleasure.

Yet another reason I could not refuse the race was that my wife, Noi, had recently started doing 5km races and wanted me to do this race with her. Thus, began the first race we did together.

Before the race began my former coach heckled me continuously that I had to keep running after 400m or that I could not use blocks at the start. For most former sprinters the thought of a 5km race is of an ultradistance run, so I guess his comments were not too unexpected.

I learned one important thing from the race: a single 5km is much different that a 5km run as part of a triathlon...you actually need to race the entire distance! No conserving energy. I pushed myself to a finishing time of 18:16 winning my age group and the alumni division (much to the shock of my former coach who later asked if I still run). My wife got a personal best by nearly a minute (26:56) and beat many Brown lacrosse and football athletes (a great achievement as my wife had not really ran until this past year). My daughter Jai loved watching the finish and cheering 'go mommy!'

This was truly an enjoyable race and an excellent family experience.

Crohn's and Colitis Blogs - mile 486

I have recently started a new blog page. The new blog, Crohn's and Colitis Blogs, is meant to be a collection of online resources for patients, their family and friends to visit and navigate with ease. This will not replace this blog, but just serve as a supplimental site to be used as a tool. Check it out, give comments and tell me of other online resources that I should post!

Wrentham Duathlon - mile 478

Wow! I let a whole month go by without posting...the days just fly by and I have already began my racing season!

The season started off great at the Wrentham Duathon in Wrentham, MA. It was a 65-degree partly cloudy morning; you couldn't ask for better conditions (not even any wind). In short, it was a great start to the season as I finished 3 minutes ahead of my target time and took 4th place in my age group. My total time was 1 hour, 5 minutes and 21 seconds for the 3 mile run, 11 mile bike, 2 mile run race.

Not only was this the first race of my season, it was a first in many other aspects. Most notably it was my first race wearing a jersey with the Asacol logo as they have kindly sponsored me for the season and will be partnering with me on a fundraising campaign to raise money for UC awareness and research (as I will discuss further in a later post). Most exciting was that a few people actually commented and asked about Asacol and UC and even one spectator had UC and also takes Asacol. I felt like I was already spreading awareness, even if it was on a small scale!

It was also my first race doing a shoe-less transition (my cycling shoes were on my bike and instead of changing shoes in transition I changed while cycling). I had not had the chance to practice this, but I decide this race would be a valuable practice opportunity so I decided to just try it. Surprisingly, it went well and I never really thought I would get into an accident (my biggest fear). I did have to adjust my shoes mid-race, but overall I probably saved time.

I used a time-trial helmet for the first time as well. I do not know if it actually made a difference, but regardless, I felt fast.

Overall, it was a great race to start the season and I look forward to the racing season and, particularly, racing for Asacol.

Causes - Stress

When talking to other individuals with UC, the issue of stress often enters the conversation. It is well known that stress can induce a flare in the disease. Stress has been indicated to worsen or even cause many maladies involving the immune system. It follows from this that some hypothesize that stress is a cause of UC. This has not been proven (and in my opinion, not likely), but it certainly effects the progression of the disease.

Without boring readers with all the details, I will say that there are plenty of stresses in my life. Although I am very happy with all aspects of my life, work, family and training all present a high level of stress in my life. After all, who doesn't have stress? For those of us with UC we need to take measures to reduce stress. I have mentioned in other blog entries many things that help me reduce the stress in my life including many understanding individuals, exercise and speaking openly about UC.

Reduce the stress and suffer less!

Workout Maps - mile 313

I found a great new website to use as a training aid. It is mapmyrun.com or mapmyride.com. This website is interactive with Google maps, is loaded with features and is free! You can plot workout routes and it will give you back the distance, elevation profile (although I have not had success with this feature), and even save your routes. I learned of it yesterday and have had way too much fun wasting time plotting my usual routes. This will be of particular use as my GPS unit has began to malfunction.

It's a part of life - mile 277

Embarrassment: it is a part of life! Today I was reminded of this fact that nobody really likes. Having UC is a reason to stress over the possible situations that may result in embarrassment; particularly if you are having a flare. Today I remain in remission, but still had an embarrassing moment relating to the big "#2".

The daily morning routine is my wife, daughter and I all pile into the car at ~7am. First we drive downtown to my wife's work and let her start her grind while I try tactic number 455 to distract my daughter (Jaixai) so that she is not too upset that "Mommy" is leaving. Next stop is Jaixai's daycare and then to campus for me. When we get an early enough start, Jaixai and I will go to a cafe and share a muffin before daycare. Today was one of those fortunate days.

So we were sitting at a pastry cafe and enjoying our cranberry walnut muffin when I felt the need to go, well, #2. I did not feel the common urgency that comes with UC, but I have learned from my experiences to play it safe...so off to the restroom I went. Of course, since it was just the two of us, my daughter needed to come with me (although against her will). This morning she was actually pretty good and agreed to come with me. Now for the embarrassment:

We were in the bathroom and Jaixai was saying in her exceptionally loud 2-year-old-voice little one-liners like "Daddy poopy, huh?" or "Stinky fart (fortunately in Lao and not English)", or when I was flushing, "Bye-bye poopies!" Either way, I think she made great entertainment for the rest of the cafe customers all at my expense.

I walked out and pretended not to notice the people looking at us and smiling...we left after only a few minutes. I was a little emabarrassed and realized that it is apart of life for us all; not just those with UC.

I cannot wait to get back at Jaixai when she is a teenager!!!

Stress Release - mile 221

Wow! What a busy week I have had. I will not bore readers with the details, but in short, the week ended with an hour-long scientific presentation to my department at Brown University (this included nearly all members of my thesis committee) and began with my computer crashing on Monday losing all software and files. That explains the lack of posts this week. Reflecting back on it, I am shocked that the added stress did not cause a flare of my UC. I suppose this was the case for two main reasons: 1) I kept confidence and knew that I would survive it and 2) I temporarily neglected my family and they supported me despite this. This weekend was made all that much sweeter as I relaxed, released pent-up energy on my bike and spent time with my family.

Tag Team - mile 186

It is always a good thing when you have a partner who can help you tag-team parts of your life. My wife and I have both been very busy with work this week. If taking care of our daughter, Jaixai, fell on only one of our shoulders it create a huge stress load; despite the fact that spending time with Jaixai is something we both enjoy. We both have deadlines and this weekend we tag-teamed care of Jaixai so that we could each have a day to be productive with work. Today I made a lot of progress and got in a 25 mile bike ride! I did miss spending time with them, but I know this will enable me to spend the weekday evenings together with them. My wife is amazing in helping with all aspects of my life so that stress can be reduced (of course a very important aspect of me staying healthy).

"Old-man's Disease" - mile 161

Ok, as a warning, this post is serving as a type of vent for something I overheard and frustrated me.

I was leaving my GI doctor's office and I overheard a conversation that one patient was having with a nurse in the waiting room (of all places). The patient was a man, probably in his mid-thirties, and was dressed well (successful business-man look). I overheard the conversation due to the brash tone with which he was speaking. Mostly because the tone and mannerism seemed unfitting for his appearance. However, it was his words that truly caught my ear.

Speaking with anger, the man stated that this was an "old-man's disease" and that he was too young to be experiencing it. Not knowing the rest of the conversation I assumed that he had recently been diagnosed with Crohn's, UC, diverticulitis or some other GI malady. I acted as though I had not heard anything; much like the faces of others in the waiting room. However, this comment was not something that left my mind easily.

My first reaction was one of agitation. Perhaps I was feeling self-conscience about my own difficulties. I am a good deal younger than that patient and his "old-man" comment hit home. I began to wonder if others in my life would view me as an incapable "pre-elder." I still have a lot of ambition and goals for my life and this comment made me revisit my own doubts (that life could be normal) when I was first diagnosed.

That is when my thoughts about the situation changed. I realized that the patient was probably recently diagnosed and going through the normal frustrations that come with the experience (although, the patient would have been better off discussing this in private with his doctor). Ironically, witnessing this event turned into further inspiration for me. I realized that, despite currently feeling well, I had once been in a poor condition. Coming out of that was something to my credit, but mostly it made me want to share my experience and hopefully encourage others to work through the rough periods. You can live a happy, healthy, active life with UC and an occasional reminder of that is helpful.

2006 USAT Ranking - mile 157

The official 2006 USAT rankings were published yesterday. I had a ranking of 79 points in the duathlon. The point system works by percentage (best = 100, worst = 1) and is formulated to consider individual times, places and the difficulty of the courses raced. The ranking of 79 is not too bad and means that I am in the top 21% even though I only did two races. This is a good improvement from last year's ranking of 73. I hope to improve my ranking again this year even though I will only be doing two races once again.

Back Outdoors!!! - mile 145

The New England weather is beginning to get warmer! I was able, for the first time in over a month, to do a workout outside. It felt good to be able to open my stride and get into a rhythm; something that just does not happen on a 200m track. Not only is the warmer weather exciting from a training perspective, but also from the family perspective. Jaixai, my 2 year old daughter, loves going to the park, going for walks, going to outdoor concerts...really just going anywhere outdoors. We did an indoor test-drive of a tent. I think she is going to enjoy camping this summer.

Presidents' Day - mile 135

My daughter's day care is closed for the holiday. This gives me the excuse to take the day off myself and just enjoy it with her. The current temperature is -6 F, so we will be indoors the whole day. Craft bucket here we come!!!

Tributes - Dr. K

My first tribute goes out to the first person who learned of my disease: my gastroenterologist. I'll call him Dr. K, for the sake of anonymity. I often stress the importance of a good GI specialist for any UC patient on this blog. Good communication helps to individualize treatment. As mentioned in an earlier post [link], good communication does not only mean articulation and thorough description, but also active listening. My appointments comprise mostly of me telling Dr. K how my condition is, any patterns I recognize, my suspicions about treatment or happiness about treatment, my eating habits, financial constraints, how UC affects my family life, how my research is going, how my training is going and how my condition is during different types of training, the level of stress that is in my life, and the list goes on... This is a lot to listen to for a busy doctor. I have been fortunate to find a doctor that does take the time to listen and even tease it out of me if I feel shy at the moment. He listens well and takes all of these factors into account when deciding and modifying my treatment. I know Dr. K does this because he then takes the time to explain how he arrived at the best treatment regimen for my life; including examples from the mostly one-way discussion I just had with him.

However, rather than just facilitating a good recovery and maintenance of remission through treatment, he also becomes a part of the treatment. Dr. K actively participates in my treatment by reducing stress. He is soft spoken and creates an open environment that allows me to speak freely about UC. Most importantly, this confidence translates outside of Dr. K's office. Being able to speak about UC in his office has gradually made me comfortable to speak about my condition with others in the various aspects of my life (family, friends, colleagues, etc.). This has greatly reduced my stress and improved my condition. Being apprehensive to discuss UC created more stress and worsened my condition. Fortunately, the practice in Dr. K's office has enabled me to over-come the apprehension, reducing stress and aiding my treatment.

Thank You Dr. K !

Year of the Pig - mile 126

Happy Chinese New Year!!! 2007 is the year of the pig (boar). Whether you are Chinese or not, the Chinese New Year is always fun to celebrate. The food, music, fireworks and dragon dances are always enjoyable and entertaining. However, an additional reason to celebrate is that the worst weather of the winter is behind us. The Chinese calender is a lunar calender and the New Year is a pretty good estimate as to when the temperatures will begin to rise. After the ice storms in New England last week, I am happy to see the new year!

Good Doctors Needed - mile 106

As I was leaving work in my lab last night I unexpectedly ran into my GI doc. Although this was the first time we have seen each other outside of his office, it is not that unusual (he is a medical school professor and I work in the medical school building). He immediately recognized me , called me by name and asked specifics about my research, training and family. With any health care provider it is nice if they know you on a personal level despite their many patients. I figure if they took the time to know me then they have probably taken the time to know my disease. This is a particularly good and necessary trait for a GI specialist to have with their UC patients. As I have mentioned many times before, UC is a very individualized disease. Having a doctor who takes the time to communicate (meaning active listening and thorough explaining) and individualize the treatment makes the path to remission much quicker and probably helps to maintain remission.

Welcome NeoEarth - mile 105

I added NeoEarth tool to the top of the blog yesterday. This is a tool that tracks the location of viewers of this blog. I mostly put it up as a fun and cool toy, but also to get an idea if people did visit this page. After only one day with the tool I had three location hits! I know one is my mom (Hi Mom!!!) and one is probably a friend of mine. Give comments on what you think about the tool.

Individuality of UC - mile 99

One of the most frustrating aspects of ulcerative colitis is the variation of the disease from one person to another. I was reminded of this individuality of UC a few days ago when a friend of mine, who also has UC, saw me eating a pasta dish and asked in surprise, "that doesn't give you problems?!" Not only has this dish never affected me, it has become a regular sure-bet food for me and a dish I have ~3 times a week. I later saw him eating a leafy salad and was astonished that he does not experience problems with salads (the last salad I ate resulted in a hospital visit).

People who know me well might wonder why this frustrates me; I never really liked salad. The inconsistency of UC results in mis-diagnosis, difficult treatment decisions (what works for one might not for another), and different types of diet restrictions. In today's world of modern medicine we expect that once a diagnosis is made the best treatment is known and, in the case of digestive diseases, the diet restriction are known. This is not the case with UC (although some common trends are evident) as each individual must closely monitor their condition, diet and medication and speak openly about each of these with there doctor to relate them to any health problems. The good news is that you can identify, and know, the specifics of your disease. No salads for me!!!

Colgate Hockey Player Unstopped by Crohn's - mile 87

Women's ice hockey player Carly McNaughton at Colgate University has become one of the nation's best collegiate players despite having Crohn's disease. Read her story here [link] on how she overcame a hard year in which she was diagnosed, had a rough surgical experience and had to skip a year of competitive hockey play. Even though she has led Colgate in two wins this year over Brown University (my Alma mater, and a great women's ice hockey program) I cheer for her the great success story that she has become. Congrats to you Carley and all the best wishes.

Tributes - Intro

I am able to maintain an active lifestyle with my ulcerative colitis for a variety of reasons. However, one particular factor has enabled me to keep my lifestyle: the many supportive people in my life. Whether they serve as somebody to talk with, someone who can relate, someone who helps in hard times, somebody who helps reduce my daily stress or just simply someone who is understanding, my support network has been instrumental in maintaining my health. This series will serve as a thank you to a few of those individuals.

Causes - Intro

The causes of ulcerative colitis are largely unknown, but many potential causes are hypothesized. I will write a series of posts that discuss the potential causes and how they relate specifically to my experiences. I hope these topics spark interest in the readers of this blog to share some of their own stories.

Happy Birthday Asacol!!! - Mile 85

Asacol, delayed-release mesalamine tablets, celebrated their fifteenth year on the market on Wednesday January 31st. This is longer than any other ulcerative colitis medicine! It is always comforting to see a drug pass the tests of time (you probably remember the recent Celebrex and Vioxx, used as medications for many inflammatory ailments, problems that hit the news after they were on the market for ~7 years). This is of particular interest to me as it is the medication that I used to induce remission of my UC and that I currently take to maintain remission and my active lifestyle. The Asacol brand, owned by Proctor & Gamble Pharmaceuticals, sent out a news release that was reported in many papers around the world. Check out the report and the cool quote by an ulcerative colitis patient, me ;-). It can be read here [link] in Yahoo! Finance.

GOT GUTS? - mile 80

Check out the new GOT GUTS armbands from CCFA. Armbands have proven to be a great instrument of awareness in addition to raising funds to support CCFA initiatives and Crohn's and colitis research. Make a donation and get some arm bands to spread awareness! Click here [link]

My Best Coach - mile 72

Early morning exercise

It is never easy waking up at 6am and starting a workout. My daughter, Jaixai, is a great coach. She makes sure that I never sleep in and always pushes me to do "more, more, I want more!" despite how tired she may be at the time. Some of her favorite pre-dawn activities (in addition to jumping on our bed and eating everything she can find) include doing stretches, push-ups, crunches and leg lifts with me. What makes her a great coach is that she keeps me disciplined. She is also great in keeping me disciplined with UC. My wife and I share the joy and responsibility of parenting Jaixai. Therefor, there are times when my daughter needs me. This is one reason why I am very disciplined with my handling of UC. I am careful with what I eat, take my medication regularly and stay active. If I fail to do any of these, not only could it lead to my own discomfort, but may also prevent me from being the type of father I strive to be. Let the coaches in your life keep you disciplined.

WSJ Crohn's Disease Feature - Mile 56

The cover of yesterdays (Jan. 9) Wall Street Journal Personal Journal section featured a story on Crohn's disease. The article was general and surveyed all the current, and up-and-coming, treatment options. Despite the brevity and vagueness of the article it was nice to see attention drawn to the disease. Public awareness is helpful in giving those with the disease confidence. Click here to read the article [link].

Just a Finish - mile 38

Finish line, 2006 Duathlon World Championships

It took a little longer to get there than I wanted, but I was happy at the finish. This moment has been re-played in my head nearly every day since it happened. I proved to myself that I could compete at a high level despite having ulcerative colitis (perhaps the highest athletic level I have ever achieved). There were a few rough moments in this race that I was able to overcome (like dropping my cliff bar, doh!). Daily life sometimes presents itself in the same way and today I was reminded of that. I got little sleep last night and worried that today may be hard. However, I took it at my own pace and made sure I was hydrated and ate when needed and the day has gone very well.

Congrats to John Dermengian - mile 28

Congratulations to John Dermengian on successfully finishing another Ironman! John had ulcerative colitis that resulted in a colonectomy, but continues to stay active completing the 2.4 mile swim, 112 mile bike and 13.2 mile run of the Ironman competition. Read more about his story here [link].

Starting the New Year - mile 27

What better way to kick off the New Year than to begin a blog! Today, in between annual check-ups with various doctors, I did a hill ride on my bike and surpassed my 27th mile of the year. Healthy visits to the doctor and a 50+ degree day (in January in New England!) make it easy to get out for a workout.

The New Year always brings up resolutions. I was never one to make resolutions; at least not on a yearly basis. I believe strongly in resolutions, but on a continual basis at the moment when an issue to be resolved arises. This being said, I will make a resolution for this year: to enjoy every moment of my good health and not take it for granted. Healthy appointments and a good ride today reminded me of the level of satisfaction a good day brings.

My high school football coach coined the phrase "don't count the days, make the days count." That is what I plan to do each day of health; enjoy my family, work to complete my dissertation and continue training. This is also what I plan to do each day that I may feel less than 100%; be disciplined with my diet, medication and preventing excess stress. I will not measure my year with a tally of good days and bad days, but rather in levels of achievement and happiness.

Favorite Links

These are just a few links to pages that I frequent.

Relating to ulcerative colitis

• Asacol brand website. This medication has been instrumental in my treatment and their site is very informative and helpful.

• Crohn's and Colitis Foundation of America website. Has news, information, events and much more relating to IBD.

• National Institute of Health ulcerative colitis information website. A great website to learn more about ulcerative colitis. I referred all of my relatives to this website when they had questions. Those from both scientific and non-scientific backgrounds found the website helpful and informational.

Relating to triathlons

• USA Triathlon website. Homepage for the national governing body for multi-sport events.

• International Triathlon Union website. The world-wide version of the USAT website.

• Sports Basement and Trisports websites. Both are great retailers for buying athletic gear at discounted prices.

• Endurance Planet is a daily podcast relating to endurance sports and is a great resource for triathlon tips through the experience of other triathletes, distance runners, etcetra.
  

• Lance Armstrong's website. One inspiring individual that makes living active with any health problem seem possible. Small factoid: he started out as a triathlete and was the youth national champion in the triathlon.

Relating to research

• Brown University. My current institution, my alma mater (twice), where I met my wife and where my daughter will join in the class of 2027! Yeah, I am fond of the place. Afterall, I must like it since I have been here nine years.

• Artificial Organs, Biomaterials and Cellular Technologies Laboratory website. The lab where I have done research for seven years under the advisement of Dr. Edith Mathiowitz.

• Freedom 2 website. A biotech company working in the area of safe, removable tattoos. They fund my graduate studies as me and a few fellow graduate students develop the technology.

• Living Cell Technologies website. A New Zealand based biotech company where I do some consulting work.

Other websites and tidbits

My favorite movie, Children of Heaven, is the most inspirational film that I have seen.

About This Blog

"A weakness can serve as your greatest strength."

From the day that I was diagnosed with ulcerative colitis I began to live under the philosophy that I can draw strength from my "weakness." I am young and lead a very active lifestyle as a professor, triathlete, husband and father. However, there have been many moments in which it was difficult to find any strength. This blog was developed to help others with ulcerative colitis, or similar conditions such as Crohn's, get through those hard times knowing that a healthy and active lifestyle can be maintained. Therefor this blog may serve as a motivator, a reminder, an example and/or a simple indicator that we are not alone.

The blog name, Vitae Euphoros, is Latin and has the following meaning. Vitae, quite simply, means life. Euphoros, in origin, meant of good health. Over time, however, the meaning of euphoros changed to mean happiness and eventually gave rise to the modern English word euphoria. Vitae Euphoros embodies having a happy and healthy life, something that can seem impossible with ulcerative colitis. I wanted to share my experience in achieving a happy and healthy lifestyle with ulcerative colitis and help others realize this same goal.