A moment. A thought. A word.  All stories start somewhere. Mine has many roots, from my love of running developing in middle school, and my IBD diagnosis in college, to my decision to start sharing my story and “spilling my guts” just over 19 months ago.

When I selected “Publish” on my first post, I began to share my story and to place a focus on using my life experiences to educate, to encourage fellow IBDers, and to stress the message that anybody can make big accomplishments by setting goals, following a plan, and being consistent.  I thought that it was fun to look back at that first post and think about the benefits, the good things that’ve happened, how much I’ve persevered through tough times, and how I’ve been able to help fellow IBDers.

Many great things have happened since I pressed that button, and here’s a list of the big milestones:

  1. September 13, 2015: I completed my first Ironman in Madison, WI!
  2. September 28, 2015: I went through my first in a series of surgeries to remove my large intestine (learn more here) and create a temporary ileostomy.
  3. December 7, 2015: I completed my second surgery, which included the removal of the remainder of my colon and the creation of a “j-pouch (see link immediately above for more info).
  4. February 29, 2016: I completed my final surgery! This was the quickest of the three as it was the “take-down” of the ostomy so my plumbing was fully connected.
  5. September 25, 2016: I completed my second Ironman in Chattanooga, TN, which was as an athlete part of Team Challenge.  It was no easy feat to recover from surgeries and then get back to my Ironman-capable state.
  6. October 2016: I began coaching the running team for Team Challenge Denver.
  7. February 2017: I took part in the New Orleans Rock ‘n Roll Half/Full Marathon as a coach for Team Challenge.  Team Denver sent 11 athletes as part of the 290, and I was one of 28 coaches on the course running with the athletes. It was a wonderful experience.
  8. April 2017: With a new season upon us, I’m  coaching a new group of Team Challenge Denver participants in prep for July events at the Napa to Sonoma Wine Country Half Marathon and the Saratoga Springs Half Marathon (New York).

Great things are in store for 2017.  I’m feeling strong, I’m proud of the past 19 months,  I’m excited to be racing back at a high fitness level and to race/fundraise with Team Challenge triathlon team, and I’m honored at the chance to continue to coach new athletes toward completing half marathons through Team Challenge Denver.  Here are some of the key events I’m excited about:

  1. May 7, 2017: I will take on the Colorado Marathon.  This is the first stand-alone marathon I’m doing since June 2014. I fell in love with running at a young ago, so it’s been rewarding to again focus on training for 26.2 miles. My goal is to also quality for the Boston Marathon in 2018, and I’m on track to achieve this.
  2. July 2017: We’re a few weeks into the summer season for Team Challenge Denver. We have ~30 participants training and fundraising for half marathon events in Napa, CA and Saratoga, NY in July. I will be traveling to Napa, and I’m even more excited since I’ve not yet visited that area.
  3. August 5, 2017: I’ll be taking on the Ironman 70.3 Boulder (half Ironman). Along with my training, I’ll be fundraising for the Crohn’s & Colitis Foundation.

I will be sharing more through blog posts, Facebook page updates, and in conversation. I’m excited to continue to share my story and to have a positive impact against Crohn’s Disease and Ulcerative Colitis. I am seeking support as I fundraise for my Ironman event with Team Challenge.  You can find my personal website to make an online donation at www.lukeygtri.com

It’s impossible for me to say Thank You enough and express my appreciation for following my story and offering your support. My challenges have become about more than just me, and this gives me endless motivation and drive to keep fundraising, encouraging, and setting the next goal. It’s been fun to look back at the beginning, and I’m so excited for all that lies ahead.

-Luke

Support Luke with a donation to the Crohn’s & Colitis Foundation here.

Follow Luke’s Facebook page ‘Luke vs Triathlon‘.

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A happy coach (and Petey Poo / Smelvin) at the Team Challenge Denver #NapaToga kick-off on April 1st.

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The End of 2016

Posted: December 31, 2016 in CCFA, Fundraising, My story

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It’s been a wild, crazy, unique, and wonderful 2016.  I made the right decision to deal with tough surgeries in the hopes of coming out feeling better and stronger. It worked. I approach 2017 with excitement because I’m feeling great and my running legs have returned.

In 2016 I’ve been heavily involved with Team Challenge and the Crohn’s & Colitis Foundation of America. As a patient, an honoree, and athlete, and a coach, I’ve tied myself strongly to the CCFA and have used the organization to help share my story, educate, and motivate other people to reach goals and fight disease. It’s been a great year!

I have many exciting adventures and races in store for 2017, and I will continue and strengthen all of this with my continued story and even more support for the CCFA through participating as an athlete and as a coach of Team Challenge Denver.

I thank all of you who have followed my story, given advice, shared with friends and family, and provided any form of support and encouragement. I hope I have done the same for you. As we’re on the final day of 2016, I offer a last chance for you to donate in 2016 (for inclusion in your 2016 taxes/deductions!).  Here’s where you can donate: www.lukeygtri.com

Stay tuned for much more in 2017!  Happy New Year.

Obstruction & Hospitalization

Posted: September 5, 2016 in CCFA, Fundraising, My story

I recently escaped the hospital…again. This visit was unexpected, not welcomed, and much sooner than I had hoped since I’m six months past my final surgery. Here’s the story of significant discomfort, a wasted weekend, and a poorly-timed hiccup in my Ironman training:

I started to feel abdominal discomfort on a Thursday evening before bed.  I woke up Friday feeling worse and with my GI system straying from the usual routine. I knew this wasn’t a good sign and was pretty sure I was dealing with either a major slow down or a potential blockage of my GI system. I didn’t have an appetite and it took every ounce of energy I had to get myself moving and into my office. A busy Friday of work ahead meant no chance for extra rest. I once dealt with similar discomfort about a month after my first surgery, but that resolved itself after about 8 hours of discomfort. My hope was to push through this and feel better later in the day. It didn’t happen.

I managed through a hectic, stressful morning of work meetings and tried to keep my discomfort and lack of energy in the background. This got very tough, and at 2pm I hung up from my last phone call to attempt a short nap.  This attempt turned into two hours in bed with worsening discomfort and pain instead of rest. My abdomen was so uncomfortable, bloated, and pressurized that it seemed it would pop like a balloon.  I hadn’t used the toilet since the night before, which was very abnormal and a bad sign. At about 4:30pm, the dreaded salivation began and I knew what was coming. Over the next 3o minutes, I vomited a few times – profusely, forcefully, and very unpleasantly. That was the final cue that I needed to escalate to medical care since it was clear this wasn’t going to resolve naturally. I was exhausted, in pain, weak, and somewhat disoriented. I was worried, home alone, and didn’t have a plan to deal with an emergency situation like this. The physical discomfort and lack of mental focus was not helping my decision-making. What was I going to do?

I knew I needed to get to medical care. Do I go to a hospital, an ER, or Urgent Care?  Do I just call 911? (yes, I felt this bad to consider it) I called my brother and mom for some advice, but both calls went to voicemail. I managed to identify an Urgent Care near me and called to confirm they accepted my insurance. I packed a small bag of necessities, crawled up the stairs, and got into my car. For such a simple series of events, it was a challenge to get these done and out of the house. I drove the 7 minutes to the Urgent Care.

Urgent Care was fortunately not busy. Who wants to be there on a Friday night anyway? I was given attention immediately upon check-in. I was brought to an exam room, changed into the always-sexy gown, and collapsed into the hospital bed.  Are you in pain?  “Yes!” was my quick response. The pressure and discomfort were making me sweat, and I felt as if an Alien was going to burst from my abdomen at any moment. They administered an IV bolus of dilaudid, a pain med that I was quite familiar with from post-surgery hospital stays. The stuff works wonders, as it kicks in immediately and efficiently suppresses pain. I’m a complete wuss when it comes to pain, so this helped me become a bit more relaxed. After an x-ray, the results confirmed my self-diagnosis of a small bowel obstruction. The x-ray revealed dark “sausages” in my backed-up, bloated, screaming small intestine.

Urgent Care could do nothing more to treat me, so I was transferred to Boulder Community Hospital about 20 minutes away. I was fortunate to have Kristin pick me up and serve as a wonderful taxi/ambulance to the hospital.  The nurse wheeled me out of Urgent Care in a wheelchair, but I made sure to first snap a thumbs-up photo before my departure. Given my recent medical dealings, my thumbs-up photos have become somewhat cliché. No matter the situation, discomfort, or impact to life, I find it important to stay as positive as possible and remember that “This, too, shall pass” and that things could always be worse. I avoid the “woe is me” philosophy, as this only hinders my situation.

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Always maintain a big thumbs up. Always maintain a positive mental attitude!

I arrived in my hospital room around 9:30pm Friday night; a large, 3rd floor room with a window facing an enclosed, outdoor open area.  In a normal hospital, this would have been a barren roof with rocks; but the area was alive with planters and greenery, and I had a lush tree right outside my window. I got into bed and received more pain meds, appreciating that the other effect of dilaudid is that it makes me quite drowsy.  Little did I know that the most unenjoyable experience of this ordeal was about to begin. In order to reduce the bloating and pressure and in the hope of helping my system improve without surgical intervention, they were going to place an NG tube (nasogastric tube). Think garden hose, into the nose, down the throat, and into the stomach.  It was a truly miserable, invasive experience. The placement was a complete shock to my system, and there was no way to mentally or physically prepare for the awful sensation of this infiltration.  As the nurse was inserting the tube, it dug behind my face and into my sinuses, scraped the curve of my esophagus, and then moved down into a resting place in my stomach. The tube remained here, supported by a sticky mess of tape on my nose. The tube was placed to suction out my stomach contents, a very odd feeling when turned on as my stomach contents moved in reverse. I’ve been cringing as I write this description, as the experience was more dreadful than I can explain in words. This is me giving as much of a smile as I could with the tube placed. And here is a view of the output container from the tube. I had seen these in every hospital room I’ve been in and wish I was still clueless about their function.

My first night was awful.  I couldn’t get comfortable in the bed. The NG tube was also pumping sporadically and the tube bothered the back of my throat and I felt it each time I swallowed. The pain was decreased by the dilaudid, but it was still present and variable as it started to wear off. Even when not in bad pain, the discomfort of pressure in my abdomen was always present. Hospital stays are also known for frequent interruptions, so sleep is generally short-lived. I was exhausted but couldn’t sleep. I remember staring at the clock, watching the minute hand tick away, and being frustrated with the entire situation.

I was very worried about the potential need for surgery, but I maintained optimism that the evil NG tube pumping away would help my GI system resolve the issue. I was 5 weeks away from my Ironman, and any prospect of more surgery would obliterate my ability to race. Instead of confinement in a hospital room, I should have been outside in the sunny weather, riding my bike for 6 hours on Saturday, completing a long run on Sunday, and enjoying a cook-out and relaxation on the deck with Nick and Sarah.  I was frustrated with the situation, but I tried my best to remain optimistic and hopeful. I spent Saturday and Sunday in the hospital, always in discomfort and continuously connected to the NG tube suction. I could eat no food and my liquid intake was very limited. Even after one sip of water, I immediately felt more discomfort and abdominal pressure. My level of sleep improved progressively over Saturday and Sunday nights, but time slowly ticked away to Monday and I was still in the hospital. X-rays each morning still showed blockage and my abdominal discomfort was ever-present.

In discussion with the doctor on Sunday, we talked about removing the NG tube. This would need to be done to see if my system was recovering and able to handle liquid/food intake, but the risk of removing the tube was that it was the only way to help if my system wasn’t flowing properly. If we removed the tube prematurely, I’d be right back to where I was. I WAS NOT going to handle another insertion of that tube.  On Monday, we made the decision to remove the tube. The doctor yanked it out, another shock to my system, though it was quick to remove and I was happy to be free of the invasive apparatus. The action plan was to advance from the minimal, liquid-only diet to slowly eating very some very light food. We’d give that a few hours to see how I was feeling and then do one more late afternoon meal to be sure I was doing OK.  If all went well, I’d be released in the evening. It was mid-Monday morning and I hadn’t eaten since a piece of toast early Friday morning, so I was mentally and physically longing for food. I had debated my “first meal” menu for some time, so I ordered Jello, pancakes, and mashed potatoes with gravy.

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The first meal. I can’t explain my excitement!

It was a joy to eat! I ate very slowly and chewed excessively, out of concern for my GI system and since every bite seemed to take up 10x space than it should, but I finished the tray in 90 minutes.  I was feeling more bloated but still decent and optimistic. I managed to get in my first shower, which was not rushed and very relaxing, but things than started to worsen. I was back to feeling extremely bloated, pressurized, and in pain. I tried to deny it. What if I just tell the nurse it is fine so I can get out of here and deal with it from the comfort of my home? I just wanted to leave. I wanted my bed, the comfort of Lainey (Mike’s dog, my cuddle buddy and office assistant), and to be free from the hospital. I sat in the bed, growing more uncomfortable, and stared at the nurse call button for about 30 minutes. I finally let out a frustrated, verbal “Noooooooooo!” and hit the button. This summoned my wonderful nurse, Andrea, who had been a great caregiver and hopeful that I would resolve this soon.  She walked in and was as dismayed as I was when I told her the news. No more food, more pain med, and another night in the hospital with the hope that the same action plan will be successful tomorrow.

Tuesday started just like Monday with an x-ray and a breakfast of light food with a lot of hope for dessert. Like the previous day, I ate very slowly and felt decent by late morning. My goal was to get to the afternoon meal and then escape to home. My stomach was churning and still more bloated, but it felt better than the day before. I ate a light afternoon lunch about 4 hours later and was decent afterward. I was by no means back to normal of to the comfort level I hoped, but I didn’t regress like on Monday and just wanted to be free of the hospital. I still had some lingering concern of a repeat situation once I got home, but there was also benefit to being in the comfort of my home and having more mobility. I was discharged at 3:15 PM on Tuesday and happy to have Nick pick me up and bring me home. The remainder of Tuesday was laid back and restful, and I was elated to have my bed back.  Wednesday was a final day off work, per mandate by the doctor for more rest and since I still didn’t feel well.  I went back to work on Thursday, feeling ready to get back in a routine but still not on top of my game.  It took several days of continued slower-moving and cautious eating at home, as I continued to feel bloated and uncomfortable.  It took about 5 more days before I felt like I could get back to my normal eating habits or eat more than a couple of bites without feeling very uncomfortable. My first few nights of sleep were not enjoyable, as I went to bed very bloated and pressurized.  I still had concern of getting to a full recovery, but I was feeling nearly back to normal by the following Sunday (making this about a 10 day ordeal!).

Aside from the unenjoyable 10 days, this came at a very poor time during my training for Ironman.  I was in the hospital when I was only 5 weeks away from race day. I hated this impact since I have been working hard at this goal and getting back into training not long after my surgeries, and my training the weeks before this incident had been going very well. It was a swift “kick in the gut” to deal with this, but I was at least happy that it was not any closer to my big race.  I’m now less than 3 weeks away from Ironman Chattanooga, my second Ironman!  I will get through the day, I will be strengthened by all that I have dealt with in the past year, and I will cross that finish line. I’ve not taken anything for granted, as there is a drastic contrast between my surgeries, time in the hospital, and recovery against my endeavor to return to training and prepare for my next Ironman only 7 months from my final surgery.

I’m doing this.  I’m prevailing over significant physical challenge!  A true sense of accomplishment is only realized when it doesn’t come easy and you push yourself through tough challenges. Find your goals, and you will be a stronger person for working toward them and a happier person for achieving them.  My goal has not been easy and I’ve had many challenging days, but I’m excited and anxious to cross the finish line at IRONMAN Chattanooga in three weeks.

You’re all aware of my story, my struggle, my reasoning, and my goals. I’ll echo that I am doing this for a greater cause than myself. I’ve shared my story to help offer motivation to all of you that you can achieve your goals regardless of the forces and reasons trying to resist you. I’m offering insight into my struggle against IBD and the surgeries I was forced to endure. I’ll be only 7 months past my final surgery and 8 months of non-activity and I will cross the finish line after 2.4 miles of swimming, 112 miles of biking, and 26.2 miles of running. An integral part of my cause is helping to raise money for The Crohn’s & Colitis Foundation of America via my participation with Team Challenge. I don’t easily ask for donations, as this is your hard-earned money and you have the right to be as generous as you’d like with it and pick from the plethora of causes that people are fighting for. I’ve been through the worst of times with IBD and the best of times with athletic success, so I choose to keep training for those best of times, to become accomplished, and to fight against the worst of times by gathering donations in the hope that future people with these diseases will have a better quality of life and a chance at miracle treatments and cures.

I don’t want people to have to go through the surgeries that I did.  They changed me forever, but I’ve turned this experience into something beneficial.  The power of a story and the power of a donation are both amazing things.  I’ve been humbled by your support, but please consider a donation to my campaign. Join those who have offered financial support to the CCFA by visiting my website: online.ccfa.org/goto/lukeygtri

Add power and impact to my story. Your donation is more than just money – it goes a long way to support patient outreach and support, research, and puts a HUGE smile on Luke’s face.  Thank you! http://online.ccfa.org/goto/lukeygtri

35

Posted: July 6, 2016 in CCFA, Fundraising, My story

Today marks the start of my 35th year and my my 21,776th day of life.  That’s a lot to look back to, but I have so much more to come.  As you’re well aware, I had some big things happen since this time last year that have framed the past year:

  • I started this blog and the effort to share my story, which has been rewarding and neat. I’ve used it to inform, educate, and motivate. I’ve made some great new connections and it got me connected to Team Challenge.  As I write this, I smile at a happy birthday note: “A very happy birthday to a tenacious and inspiring soul.” These are great adjectives that make me feel good and a predominant reason I chose to start sharing my story.
  • I completed my first Ironman in Wisconsin in September along with the baggage of disease and challenging symptoms.
  • In September, I began a series of three surgeries to attack the stubborn, worsening symptoms of Ulcerative Colitis. My final surgery was February 29th, and I look back now happy that surgeries went as planned without any major issues & that I’m recovering well and getting back to the athletics and exploitation that I love.

The photo above at the Continental Divide was taken last week in Rocky Mountain Nat’l Park, along with visitors Jess and Matt.  I realize this is a very fitting photo representative of my situation last year vs. my situation now.  The challenges of the disease, my symptoms, and the impact to my training were tough, but I have crossed over the divide and am through the worst. My journey forward will continue to have adversity but it will be easier than the past.  I’ll continue to share my story and fight against IBD. I’m back into training and working hard to regain my fitness as I prepare for my next Ironman in Chattanooga on September 25th.  Here are some highlights of the past couple months of training as I have immersed myself back into triathlon in preparation:

My first post-surgery (aka “new era”) race was the Bolder Boulder 10K on Memorial Day.  It was warm, the course is hilly, and my knees bothered me, but I was overwhelmed with happiness to cross the start line and then the finish line in Folsom Field.

My second race was early June in Green Bay, the Bellin Run 10K.  This is my 15th year running the Bellin, so it was enjoyable to be back in WI and able to run.  I was also a happy uncle as my niece and nephew ran the kids run and that my sister, brother, sister-in-law, and cousin joined to run the event.

This past weekend was my third race.  This was a 4th of July race in the paradise of Crested Butte, CO, a 1/3 marathon (~8.75 miles) that I ran along with friends during a weekend of camping and Colorado beauty.  It was a tough race with a variety of terrain, hills, and elevation but I was very happy to finish this as the longer race thus far in the “new era.”  I had a ton of fun this weekend with this group of friends and fellow Midwest expatriates:

I’m fortunate to also have had some enjoyable bike rides recently.  I rode 80 miles yesterday and distance will be steadily increasing.  I’m happy to be back on my bike to enjoy the endless Colorado beauty:

I’m happy with where things are but even more optimistic and excited for the year to come!  As anyone reading this will likely know, I’ve put forth a lot of effort to share my story, raise awareness for IBD, Crohn’s Disease, and Ulcerative Colitis, and to take part as an honoree and athlete for Team Challenge in support of fundrasing for the CCFA (Crohn’s & Colitis Foundation of America).

The very best birthday gift today would be your continued support and consideration of a donation to support my Team Challenge initiative as I train for Ironman Chattanooga and fundraise for the CCFA. How about $1 to celebrate each of my years ($35)?  Or $5 per year for support of the 13 years I’ve been fighting IBD ($65). You can make a donation here. I warn you that this will instantly make me smile and will come with much appreciation.

On that note, I need to leave Starbucks (enjoying my free birthday drink!) and this computer and make my way to the mountains for a hike.  I’ll leave you with some images of Colorado from this past weekend.  THANK YOU for your support, your caring, your interest, and for taking the time to continue to follow my story.

Your donation fuels me toward my goal of raising $5,000 for the CCFA to battle IBD and help current patients and their families.  It gets me through the tough training sessions as I get back to the fitness level that will see my cross the finish line at Ironman Chattanooga. I thank you.

Welcome to the first installment of a new series I’m calling “Me vs. IBD.” Many of you know my story, but I am one of very many who have battled IBD – Crohn’s Disease & Ulcerative Colitis – the “invisible disease” that is associated with symptoms that are generally taboo.  Since I started sharing my story to the masses, I’ve connected with many people, heard tough stories, and been generally inspired by the human spirit through the efforts we put forth when faced with disease and challenge. This blog series will feature the stories of great people who I’ve met along my journey and will offer you a different perspective of a similar story – people fighting against a disease.  We all have our battles.  We all have our stories. My hope is to share more stories that will educate you, inspire you, and give you a glimpse into the battles against IBD.


Me vs. IBD: Episode 1, Running Saved My Life – Ben

How did my IBD story collide with Ben’s?

I met Ben this past March.  Ben is a fellow IBD patient and a Team Challenge extraordinaire.  I met him and Heidi together for the first time at a meeting coordinated through Team Challenge.  I’m part of the National Team Challenge chapter of athletes training for Ironman events, so I was connected with Ben and Heidi – both affiliated with the Denver Team Challenge chapter – since I live in close proximity.  Ben is a coach for the team and Heidi the team manager. We met to determine how I could engage with the Denver team for mutual benefit.

Ben shared his story with me, and I felt an immediate connection with him.  While I had only known him for 10 minutes, I felt a great camaraderie due to our similar stories of athletics, disease, and perseverance.  I was honored to hear his story, and soon realized that this was this first time I met somebody else with the disease by way of the disease – our mutual cause to fight against the disease brought us together.  Ben’s story and this first meeting with him and Heidi was my springboard to becoming involved with Denver Team Challenge. I’ve since shared many Saturday group runs with the team and have met some wonderful people. I’ve also since seen Ben’s amazing impact on the team by way of coaching, educating, and inspiring with his life story.

This episode is dedicated to Ben and his story. What he’s chosen to share is a speech he presented as the honored speaker at the Team Challenge Pasta Party before the 2015 Napa Half Marathon.  This is a powerful speech that I’ve been very fortunate to hear in person this year.


Here’s Ben’s story:

My name is Ben and I am one of the coach’s for the Team Challenge Denver.  I am also up here because I am a patient.  And I am up here because running saved my life.  

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I’ve been a runner all my life and the pinnacle of that career was qualifying for the Olympic Games in fall of 1997, in the 5000 meters with a time of 14:20.  That following spring and summer, as I was ramping up my mileage I started to notice I was getting more and more tired. . . and then I started to have cramps. . . and a little bit of bleeding.  My story to this point is not unlike many of yours, until July 3rd, 1998 when I had a massive hemorrhage at home, overnight, in the toilet.  I had no way of knowing it at the time, but that day became a day of firsts for me:

  • It’s the first day my life was saved because my body was used to dealing with adversity through running.
  • It’s the day my dreams of becoming an Olympian in Sydney, Australia were shattered.
  • It’s the day I first heard the words Ulcerative Colitis.
  • It’s also the day my collision course with Team Challenge was put into motion.

Two and a half weeks later, three blood transfusions later, and enough drugs to kill a horse I was nearly ready for discharge.  But I don’t do things the easy way . . . and I hemorrhaged in the hospital; shedding pieces of my large intestine into the toilet.  This is the second time running saved my life. 

By this time my fate was sealed and I was headed toward surgery.  My brother and sister were on their way back to Colorado with strict instructions to get their blood typed on the way in.  You see, I have B- blood and that’s pretty rare.  I guess I don’t do things the easy way. 

I’d never been close to my brother or my sister, so I asked if we could delay surgery just a little bit until they came in.  I can still see and hear it vividly as the surgeon tells me “If we wait, there will not be any surgery to do.” 

That fall, less than one month later, I went back to school and finished my undergraduate degree with my ileostomyI don’t think my classmates ever knew about my ileostomy because you just don’t talk about that stuff . . .  but I did start to run out of excuses for the bizarre noises I was making.  You cannot cover up an Ileostomy fart by coughing.  You just can’t.

Two more surgeries and 8 months later, I was connected top to bottom but there was still an emptiness.  For 7 years I learned to live around my disease and my new physiology, going through life a shadow of who I really am.  And one day I found an old pair of running shoes.  They still looked like they were in pretty good shape and I couldn’t bring myself to donate them.  I mean, who does that?  Donating a pair of shoes with some miles left in them?  That’s running blasphemy if I’ve ever heard of it. 

So I went for a run and it was awful.  But a few miles here lead to a few more miles later until a friend of mine suggested I go for a bike ride with her.  One thing led to another, and I ascended the ranks to become an elite amateur triathlete with sponsorships from some larger companies and racing with an elite team of athletes.  I realize I’m going to run out of time, so let’s call this chapter of my life “Ironman.”  November 20, 2011, with my wife and oldest daughter waiting for me at the finish line; I covered the 2.4 mile swim, 112 mile bike and full marathon run in a bit over 12 hours. . . and I became an Ironman . . . because I don’t do things the easy way.

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Here’s where the story gets strange. . .  that same year, while on a group run to fulfill a sponsorship obligation at a local Colorado running store, I met and ran with Shana Spencer and she mentioned Team Challenge and CCFA.  In that moment, I still don’t know what inspired me to admit to this complete stranger that I was also a patient and I knew something about IBD, but the stars must have aligned with my scars that night because I did just that.  I like to call this chapter of my life as “getting pestered by Shana Spencer until I agreed to be a coach.” For the record, I didn’t sign on to become a coach until Heidi Dudley took over as manager of the Team Challenge Denver. Because I don’t do things the easy way.

I’ve since come to terms with the idea my path was not supposed to be an Olympic athlete.  I think fate intervened that July in 1998, and my collision course with Team Challenge and CCFA was put into motion.  I try to take my experience from the thousands of miles training over the past decades, even tackling an Ironman; and couple that experience with my life as a patient to find a way to draw the best performances out of the athletes I coach.  Please don’t believe I’m all business though, I think the athletes I coach will tell you I also know how important it is to laugh.  I know how important it is to have restrooms available on the course. 

I get a lot of fulfillment from competing, but I’ve never had more validation for my decision to coach for Team Challenge, than I get when I help each of our athletes from Team Denver train for, and subsequently finish the event tomorrow.  

Coaching athletes for Team Challenge has shown me fulfillment from watching athletes do what they never thought possible whether they are a patient, or they know a patient, or they just want to be around the most amazing group of athletes in the world.  Few things make me more proud than hearing “That’s the farthest I’ve ever gone!” from the athletes I coach for Team Denver.

I’m not the strongest person out here tonight, but I don’t believe I have to be to help find a cure for this because collectively, we will.  And when we do find a cure, and when nobody else has to have their blood typed on the way to the airport, or have their dreams flushed down the toilet as mine were . . we win. 

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That’s only a portion of Ben’s story, but it demonstrates the severe impact that the disease had on him.  It changed his life and completely altered his dreams and ambitions. But did Ben stop?  Did he give in to the disease?  No – he doesn’t do things the easy way, so he kept fighting. He found triathlon and Team Challenge found him. After disease, unsolicited symptoms, and major surgeries, Ben committed himself to Team Challenge and used his experiences with the disease as a tool to inspire those around him.

The disease will never win. It will beat us down and destroy images of the future we saw, but we’ve found a way to persevere, grow strong, and to use our story of disease to benefit fellow patients and those of you reading this story.

Ben and I are committed to the Crohn’s and Colitis Foundation and the Team Challenge program. CCFA and Team Challenge are programs that have helped both of us and countless thousands of patients and families who battle IBD. We’ve risen from the misery of disease and hope that we offer positive outcomes that far outweigh the amount of pain and difficult we’ve experienced.  We’ll continue on this awesome direction we’re moving and would be humbled if you consider a donation to the CCFA in support of our story, our mission, and our involvement with Team Challenge.  You can support us and Team Challenge by donation to the CCFA here: online.ccfa.org/goto/lukeygtri

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I’ll start with a link to a video blog I recorded yesterday after a run (view here).  A fun way to share more insight than words and photos can offer.

It’s been an insane several weeks.  Two work trips only a couple weeks apart on top of an already overly hectic period at work.  A few different friends visiting me in Colorado.  Moving into a new place.  All good things alone, but falling into late April/early May has made things challenging to manage.

It’s been more of a challenge than I thought it would be to find the balance  between everything hitting me in life, especially with the overly hectic past several weeks.  Along with this, I’m doing what I can to get the body back into training.  At 10 weeks past my final surgery, I’d say that I’m feeling great overall and happy with how things have progressed.  I’ve been on the bike a number of times, run five times, and got back in the pool once so far.  The simple word to describe this return to training so far is: TOUGH.  Nothing is flowing, activities are more difficult, power is greatly reduced, and I’m far from the speeds I was at prior to surgery.  It’s surely not unexpected given three surgeries and seven months of downtime, but that doesn’t necessarily make it any easier to accept.  I’m staying ahead in the mental game as I have always done well, but it has taken effort to squash that inner voice of frustration, irritation, and desperation for where I was prior to surgeries.

This is a tough challenge, but I’m driven to get back into training and prepare for Ironman Chattanooga in September.  My important reason is Team Challenge, CCFA (Crohn’s & Colitis Foundation of America), fundraising, and the fight against IBD.  I’m sharing my story wherever possible as a means of educating and motivating.  I will do this.  I will complete my second Ironman a mere 7 months after completing three surgeries, and I will have an even strong story.  I’m part of the Team Challenge National Team, nearly 100 athletes who are fundraising and training for an Ironman event,  and I’ve also become a de facto member of Team Challenge Denver given my proximity.  The Denver team is filled with great people who are training for the Napa Half Marathon.

Here’s a happy photo from the groups training session this past weekend:

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All smiles at another group training run.

It’s been amazing to become involved with an organization that is committed to fight a disease that I’ve been battling.  I’ve been surrounded by a group of people who are also battling the disease, sharing their stories, and have come together as a well-knit group that shares the common thread of IBD.

Where can you help? I’ve got an ambitious fundraising initiate as I rise from the surgeries and downtime, get this body back into prime shape, and prepare for Ironman Chattanooga in September.  Team Challenge and the CCFA are an incredibly personal cause that I fully support. This is a huge challenge, and I’m motivated by each and every donation to help me get to the starting line in Chattanooga with more than $5,000 raised. You can support with a donation at my fundraising website here.

The next several months will be very exciting. Back into the training lifestyle that defines me.  Meeting more people impacted by IBD.  Rising money to fight the disease.  Sharing my story along the way.  I’ll say again that I am humbled that you have taken the time to follow my story, to read this, and to consider a donation to support this cause.

Read the rest of this entry »

I’m six weeks past my final surgery and I’ve been back to work for two weeks. Work is hectic and busy, but it feels nice to be back into a routine. It’s even better knowing that all three surgeries are behind me, they were completed as planned, and no more to come. I’m feeling great overall. I still have some healing, and my GI system has some work to do as it continues to adapt, but I can’t complain about the recovery process. Things could have gone worse, so I’m fortunate that everything turned out as planned.  I have a lot more to add to my story about my final surgery, but I won’t say much more for now. Instead, I will leave you with some words in the short video below.

Stay tuned by following this blog and Luke vs Triathlon on Facebook to hear more about my continued recovery, return to the athletic activities that I’ve been looking forward to, training for my next Ironman in September in Chattanooga, and especially my fundraising for the Crohn’s and Colitis Foundation.  I wish I could snap my fingers so that nobody would ever have to go through what I did, but I have set the goal to raise more than $5,000 to fight this battle.  You can join this fight by visiting my CCFA webpage.

THANK YOU for continuing to follow my story and for all of the support.

Video  —  Posted: April 10, 2016 in CCFA, Fundraising, My story

Surgery, Recovery, Ostomy, and CCFA

Posted: December 18, 2015 in CCFA, My story

My second surgery was December 7th. As I start writing this post nine days later, I am feeling well and definitely better than at this point after surgery #1.  In this installment of my story, I’ll share some details of surgeries #1 and #2, the start of another recovery period, and outlook for surgery #3.  I’ll go into more detail of the surgeries and the resulting changes to my intestinal landscape.  I’ve decided to include some photos because I consider these to be informative, educational, and helpful in sharing the story.  Avoid reading further if you won’t want to see photos of things like stitches, incisions, or ostomy bags.

Before I move into discussion of surgery #2 and present day, first I’ll flip back to provide some information on surgery #1. Here’s a hello and a thank you for taking the time and having the interest to read on…

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Surgery #1

I will start with some background about surgery 1 and describe the current layout of my GI system.  Of the series of three planned surgeries, the first surgery 1) was a partial colectomy to begin removal of my entire colon (large intestine)  and 2) the creation of an ileostomy to divert waste during the surgery process.  Since the intestine is a bit complex and many people aren’t clear on the anatomy (hey, I learned a lot of this because of the disease), here’s an image we can reference to assist us:

incisions

To perform the partial colectomy, internal incisions were made on the colon in two locations (I added lightning bolts to the image above at the approximate incision locations):

  1. Upper incision. This was done at the end of the small intestine and beginning of the large intestine. More specific to anatomy, the cut was made after the healthy ileum (the lower portion of the small intestine) and at the start of the ascending colon.
  2. Lower incision. This was done near the end of the colon but my rectum would remain until surgery #2, which is why this was considered a partial colectomy. The incision was made at the end of the sigmoid colon before the start of rectum.
  3. The overall view: I had a total of 7 incisions. Four of these were small (2 staples below) laproscopic incisions.  All were on the front of the abdomen toward the sides, two left and two right, two in line with the belly button and two below the waistline. One was directly above my belly button, four staples in length, and used for insertion of the camera. The primary incision was 13 staples (just over 5.5 inches), below the waist line, and used for the invasive portion of the surgery and as an escape route for the intestine to be removed.

With these incisions created, the larger section of colon between was then pulled out through a large incision made in my lower abdomen below my waist line.  My GI system was now noncontinuous and arranged in the following manner:

  1. At the first incision at the end of my small intestine, my ileum was routed outside my body, through a hole in my abdomen about 2 inches to the right of my belly button, to create an ileostomy. The ileostomy consists of the opening in my abdomen, the end of the small intestine/ileum that protrudes outside of my body (called a stoma), and an ostomy bag that I wear to capture the waste.
  2. At the second incision at the start of my rectum, the opening created was stapled shut to create a “seal”.  My rectum would then sit idle with nothing passing through it so that it could heal/rest until surgery #2. This seems strange because it is completely useless at this point and will eventually be removed, but at the time of surgery #1 it was drastically inflamed.  This damage made it too risky for the surgeons to deal with it, so it would sit idle to heal so that the surgeons could better identify key points (blood vessels, nerves, tissues) to more safely remove it at the next surgery.

The Ileostomy

Management of an ostomy is an effort.  It is not glamorous and carries a lot of mental/social baggage that is very specific to each individual. It was very strange at first, but it has also been amazing because the worst of my symptoms are in the past. The ostomy allows me to have control.  I no longer have to worry when I am away from home and don’t have to identify restroom locations to prepare a rapid escape plan. I can be in social situations and public places without worry.  This has been awesome!  A lot goes into management of an ostomy like maintaining the bag, replacing every few days, troubleshooting potential leakage, dealing with itchy and red skin, and many other concerns since the thing is always there – but these are all a very fair trade to not have to deal with the horror of the symptoms I had for too long.

Between the large size of the bag and the location of my stoma, the bag sits in an odd location and is generally always somewhat awkward. The photos above help to give you some perspective. Like any product, there are numerous vendors for ostomy bags.  The two photos of the bag show me wearing two different bags and the third shows components of the bag that I chose as the one that works best for me.

Surgery #2

As I approached surgery #2, I’d describe my state of mind as ‘READY’. I want to keep this entire process moving forward so I can get to the final surgery, final recovery, and back to my active lifestyle. My doctor had let me know that this surgery was to be somewhat more invasive than the first, but that surgery and recovery would be very similar. I have complete respect and trust in my doctor and her team, and I feel in capable and talented hands.  With the experience of one surgery already behind me, I felt more prepared and aware of what was lied on the path ahead of me.   I was less nervous because I had a better understanding of what to expect as related to the process, pain, and recovery period.  On the other hand, I knew what was coming and was very unexcited to again deal with the pain and forced period of lethargy after surgery.

As mom and I arrived at the hospital, I was welcomed by the beautiful facade of the University of Colorado Anschutz Inpatient Pavilion.  The sun was rising on a crisp, sunny morning, and little did I know that I wouldn’t breathe the outdoor air for another nine days. The arrival area was not very busy and I was quickly called back into the prep area.  I was again introduced to the sexy hospital gown, hence the unsure look of having to trade in my clothing for more time in a gown that generally only gives the feeling of spaciousness and as if you’re always showing a little something off.  Call it a funny thing to be excited about, but I also got a nice pair of bright yellow house socks as opposed to the beige socks from the previous visit.

Surgery took a bit over 5.5 hours.  This took longer than expected because, per my surgeon, my rectum was “very angry” and an abscess had begun to develop.  They had to move slower and spend more time to work with it and to be sure not to damage the nearby organs.  Due to the pressure applied and time spent, there was concern of damage to my bladder.  They gave me a dye that made my urine deep, dark blue and then observed the bladder and surrounding area for any blue coloring to make sure there was no leakage.  All turned out well and there didn’t appear to be any unwanted damage or problems.  After surgery, I spent a few hours in the recovery area because my room was not yet ready.  I came out of anesthesia well and seemed to recover better than after the first surgery.  I remember a good chunk of events and discussion from the recovery area, where there were some very nice nurses and my mom was able to join me after I was deemed generally coherent.  I asked her to take some photos, so I have some showing my typical thumbs up attitude and also one with the wonderful PCA (patient controlled analgesic, magic pain button).

The official surgical activities included a completion proctocolectomy, creation of an ileoanal anastomosis (J-pouch), and with ileostomy.  The three main steps of these surgical activities included:

  1. Completion proctocolectomy: Recall that I still had a rectum after the first surgery, so the first task was to remove this.  It was cut down to the near end and removed through the large abdominal incision.  Once removed, this left a “rectal stump” that was less than an inch and cut down to the near end.
  2. Create ileoanal anastomosis: Step 2 was the most intense and invasive, yet the most important component of these series of surgeries that must be successfully in order to be fully connected and with a continuous system after the final surgery.  If there was an issue to prevent creation of this (or if it fails in the future), I will then need to have a permanent ileostomy for the rest of my life.  My ileum (the end piece of small intestine that was routed outside of me as a stoma) was pulled down and connected to the rectal stump.  The surgeon then created what is called a J-pouch.  With the rectum removed, this pouch would serve as a makeshift waste storage area.  The pouch is created from healthy small intestine and looped on itself to create the storage area that resembles a J shape.
  3. Route to ileostomy: Like after surgery #1, waste would again be routed to an ileostomy. After surgery #2 was done, I was essentially fully connected in the manner that I will be after all surgeries are complete.  In order for the J-pouch to heal, it needs time with nothing flowing through.  A section of my intestine was identified above the J-pouch and near the opening created for my ostomy and was pulled up to become the new stoma.  My previous stoma was a section of intestine that was spliced in half (called an end stoma). In order to make surgery #3 generally quick and easy, this stoma was an intact piece of intestine that was pulled up and spliced on the side to create an opening (called a loop stoma).
  4. stoma types

Hospital Recovery

I got to my room about 8pm on Monday night.  After surgery #1, I was in the hospital until late Saturday morning. This time around, I was hoping to be discharged on Friday or Saturday.  Unfortunately, my stay dragged on in the end due to output/hydration concerns and I was not able to escape until Tuesday afternoon (for a total of 9 days/8 nights in the hospital). I’ll share some of the experiences and stories of this hospital visit.

In Bed

Pain: I hate pain, and I do not tolerate it well.  I can surely handle the ongoing pain from persistent endurance activities (marathons, Ironman, etc), but I do not do well with sever or acute pain.  The good news is that I felt like the pain was more tolerable this time around.  I was fortunate to have fewer incisions for surgery #2; they reused the large incision and the two lower laproscopic incisions but did not need to use the upper two laproscopic incisions or the belly button incision.  I’m sure it helped from a pain perspective that I had fewer incisions, and I am also guessing that using the same incision helped to reduce the pain because I still had some numbness/loss of sensation and the body had already experienced incisions in these locations.  I had a lot of incision/abdominal pain after surgery #1, so I was very happy to feel less pain this time.

Catheter: Another evil tool of surgery.  I had some major problems with the catheter after surgery #1, as it was removed after two days, I was unable to urinate, and then I had to have a new catheter placed twice (yes, as I was fully awake. That was a living hell!). Given the experience the first time, I was concerned I’d again have issues.  This time, they waited four days to remove the catheter; taking a cautious approach given the potential concern with the bladder after surgery and my experience after surgery #1. I was again fortunate, as I was able to urinate without concern or pain shortly after the catheter was removed.  Happy!

Drain: One different experience for this surgery is that I had a drain placed after surgery.  This hung to my left side and had  a long tube that routed through the small laproscopic incision on my left side. It went all the way through me to the “void” where my rectum was located.  Per the doctor, the rectum has a very defined space and other organs/tissues do not quickly move in to fill the space. As a result, the drain was needed to remove fluid that built up in that area. This was removed the day prior to my discharge. Removal was a very odd feeling. It didn’t hurt, but it surely felt as if a long tube was being pulled through and out of me.

Ostomy output vs. Dehydration: This was the biggest concern for my hospital stay and what kept extending my visit.  Without a large intestine, I will now be at a standing deficiency for water absorption (and some electrolyte/nutrient absorption). Given the setup of this surgery and that the ostomy is diverting my system at my higher small intestine, I have further reductions to the amount of intestine available for absorption. It is a balancing act of speed of flow, time for absorption, and available tissue for absorption. If this is not aligning, I will not absorb sufficient water and run a serious risk for dehydration.

My issue the first few days is that I was not flowing or producing any ostomy output. By Wednesday, I was bloated, distended, and very uncomfortable.  My abdomen was so hard that it had almost no give if you pushed a finger into it. I also became so bloated that the staples on my large incision actually started to push out and change shape. After some focus on this, I woke up just before midnight on Wednesday night, noticed that I finally had output, woke up mom, and we did a “happy dance” together. I thought I’d be in the clear after this, but then things went in the opposite direction.

By Thursday and Friday, my output had become too high.  I was eating and drinking, but things were flowing through me very quickly, I was not absorbing well from my gut, and I was barely urinating. I was to the point that my output was highly liquid and around 2 liters per day.  Dehydration became a quick concern.  Immodium and other anti-motility drugs became the tools of choice, but this was again trial and error and needed to go slow because I’d go back to the distended state if these were over prescribed.  It took a couple of days of back and forth on this, but things were eventually to a point of better balance before I was able to be discharged.

Recovery & Next Steps

We got back to Boulder Tuesday evening. Since then, it’s been taking it easy and focusing on recovery. Again, I have been so lucky to have mom here with me to help me out and keep my belly filled.  We saw the new Star Wars movie last night, so it was nice to get out in a public location after so many days in the hospital. I have my follow-up appointment this afternoon where I will get my staples removed – I’m excited for this as they are itchy and somewhat painful as my body is trying to heal. Mom and I get on the road tomorrow for the drive back to Green Bay, which we will do over two days.  I am very excited to be back in Wisconsin for the holidays and to continue recovery around family.  Both Ben & Kate and Kendra and her family will all be back in GB, so I am looking forward to having all of us together.

My doctor let me know that surgery #3 can’t be until 3 months out.  I had hoped this would be sooner, but she’s being cautious due to the problems they saw when doing surgery #2 and want to be sure there is ample time for me to heal.  Surgery #3 will be the “easiest” of the three surgeries since it is not invasive and will really be performed just to pull the stoma back inside and return me to a fully connected, flowing GI system.

Helping the Cause & Fighting this Disease

I’m sharing my story to keep friends and family informed, to help educate, to spread word about the Crohn’s & Colitis Foundation of America (CCFA), and to help raise funds to contribute to the research and fight against these diseases. The lifestyle, treatment options, and surgeries are no small fight and I am still fortunate that my condition is not nearly as bad as some people have it.

I’m sharing my story through this blog and also by way of my Facebook page ‘Luke vs Triathlon‘.  I am also very excited in that I have become involved with Team Challenge, which is the endurance event fundraising program through CCFA.  I will be the Honoree for Team Challenge’s Ironman program in 2016, and I am also going to use this as an opportunity to train for and complete my second Ironman.  I have been anxious to get back to my athletics and training after surgery and I knew I wanted to do another Ironman by 2017; combining this with Team Challenge, it was the perfect opportunity to share my story further and do complete an Ironman in the same calendar year that I completed my surgeries.

Please considering offering further support as I continue to move through the surgeries and then get back into training in advance of my next Ironman. Any donation is appreciated and will contribute to the cause of fighting diseases like that which I have been afflicted.  My website where you can also donate is located herehttp://online.ccfa.org/goto/lukeygtri

I am humbled by the continued support.  Thank you for taking the team to read this long blog post and for continuing to follow my story.  Please share this with anyone.

*Want to stay updated with my story?  You can follow through a WordPress account or select the option to receive email notification each time I publish a new post.

It’s been weeks since I have posted to this blog, but I think it is because I have so much to say. I think about it every single day.  I have had so many thoughts and ideas bouncing around my head since Ironman, surgery #1, recovery, and my return back to work.  There is so much that could pour out of my cranium that it almost becomes overwhelming. I realize now that I was trying to put too much structure on my ideas, to establish a subject to wrap around each blog post like a ribbon on a Christmas gift, keeping in line with my seemingly general theme of my life of “I know where everything is” and “I have everything planned out on my calendar”.  Sometimes chaos is needed, so that’s what this is going to be today. Choppy, raw, tangential, and probably quite long.   Sometimes detailed, sometimes vague.  My own little variety show in a blog.

I am where I’m supposed to be, and things feel right.  My situation in life.  Boulder.  Triathlon.  It’s all come together and I just feel GOOD.  I have only love for Madison & Wisconsin, but I’m so happy that I made the choice to uproot – to move to a new city halfway across the country where I knew nobody. This week marks the 1 year anniversary of my move to Boulder, and I am happy with the new friends I made and the lifestyle I have fit into. I had an incredible year of training and took joy in completing many races that led to and culminated with Ironman Wisconsin.  Ironman in Madison on September 13th will go down as one of the best days of my life.  It was an experience that felt like it lasted for a week (in a good way!) and gave me an incredible number of wonderful memories.  My health/medical challenges fully surfaced this year in an extremely ugly manner, but this forced me to make a tough decision to pursue surgery and focus on improving my overall health for the long term (and rest of my life). I am looking forward to the final recovery after surgery #3 so I can leave the worst parts of this disease scattered far behind me, rotting in the dust.

I could frame my year with snapshots of an excessive amount of bad, negative, and challenging moments. But why do that?  Why ever focus on the bad when there is so much good you can find?  My battle with the GI problems could easily be the highlight of my year.  It has been a demon in my life for 13 years now. I’ve had numerous rough patches since this time, but this year the disease and symptoms were consistently bad and became the most impactful to my lifestyle than they have ever been.  If a healthy person was suddenly forced to deal with these symptoms for a week, they’d quickly see how they are absolutely horrible, unforgiving, dirty, impactful to life, embarrassing, and humiliating. I could be angry & hateful, feel cheated, cry for days about why this is happening to me. But why do that?  Just like any tough situation in life, that does not help or fix the situation.  I chose long ago to fight and to win. I knew that I could not control the symptoms, but I knew that I had full power over how I control my reaction to them and how I deal with it. I believe that any situation could always be worse and that we can too easily get stuck in the “woe is me” mentality if we don’t make the conscious decision to remain in mental control and to put everything in context. I believe that mental will always win over the physical. To prove that, I have been through many life experiences that have fully taxed me physically – my victory over these situation has helped me become strong mentally and emotionally. Dealing with the symptoms of Crohn’s/UC, fighting, not letting it defeat me mentally; selling books door-to-door, 80+ hours a week outdoor in the sweltering North Carolina summer, being absolutely horrible at it, but not quitting; learning how to race triathlon, racing when my body did not physically allow me to do what I knew I could do, being frustrated with this but not quitting, completing my first Ironman when my symptoms were at their worst. The list could continue for some time, but my point is that I chose to have control over my responses, to find victories in everything, and to become a stronger person even from the bad.

Now with that paragraph behind us, let’s start fresh.  Sure, those were all of the “negative” things, but I talk about these things to put everything else in context. Each of these things has some aspect of a victory. They make me who I am and have helped me become strong and resilient as a person.  This strength will get me through anything. With that said, I now take time to chat about some things that really excite me in life right now, that I look forward to, and that made me realize tonight that I am where I’m supposed to be. I’ll go into more detail about most of these things in future posts, but now is just a chance to say a bit about some of the best things in life as of my cranium on this night of November 18th, 2015:

>>Surgery<< Really?  This tops my list of the things that excite me?  I’ll admit that it seems odd, but I have my reasons. I want this disease behind me. I am so sick of it. I despise the control that it had over my body and the drastic impact it has had on my racing and athletic activities (especially my running!).  I am a runner at the core and have gained so much from running since this began with track 23 years ago. It puts me at peace, motivates me, burns away my stress, and improves my overall well-being.  This beast of a disease brought my running to a halt. For so many reasons, I look forward to the moment when I can look back and remember “how things used to be” and be happy that the worst of this disease is in my past. I got through surgery #1, recovered well, and have now been dealing with an ileostomy for 8 weeks. None of these are appealing, but I already know that I made the right decision based upon how I am feeling, that I am NO LONGER on medications/chemo drugs, and that my former but always present extreme urgency to find a toilet is already in my past. I don’t deny that I still have plenty to deal with, challenges ahead of me, and that I will need to learn how my body adapts after the final surgery/recovery, but I welcome these things.  The sooner I get past them, the sooner the worst of the symptoms will be a distant memory. After pathology results came back from my former large intestine following surgery #1, I got the amazing news that my disease was deemed to be Ulcerative Colitis but not Crohn’s Disease. This is what the doctors thought near the end before surgery, but verification of this news was a big win. Since UC can only occur in the large intestine, I will essentially be “cured” after my series of surgeries.  The other good news was that based upon the diagnosis and that recovery was going well, surgery #2 could be earlier than initially planned. All is set for surgery #2 on December 7th, and the earlier surgery means the full timetable moves up.  Sooner to  my final recovery after surgery #3, sooner to a lifestyle with the worst symptoms in the past, and sooner to swimming, biking, running and RACING!!! Bring it on.

>>Mike<< He’s become my best friend since I moved to Colorado and I consider myself lucky to have this friendship. Training buddy, triathlete, fellow sci-fi dork, Midwesterner, outdoor lover, Boulderite, quasi-roommate, pantry raider, never afraid to poke fun at me, always respectful, straight up good guy.  This is another list that could just keep going. We were able to open up to each other quickly and easily while also becoming the perfect motivators for each other as related to training, racing, and triathlon. He’s given me incredible support and understanding as related to my disease and symptoms starting from the first discussion when I was still not entirely comfortable talking about it.  He bought me Legos and butterscotch pudding for my hospital stay, watches out for my well-being, and was right there to help before and after surgery right next to my wonderful mother. I have a ton of respect for this guy. He also just killed some recent triathlons (half Ironman in Texas & Olympic+ in Florida), so I’m living vicariously through him while I’m down between surgeries.  I’m extremely proud of him, and his victories make me even more excited for my return to racing after my final recovery. It’s going to be an awesome 2016 in triathlon!

>>Justin<< Sharing my story and starting this blog has been very rewarding. I was very nervous to pull the trigger and make this happen, but I am very glad I did. I went to high school with Justin.  Though we hadn’t talked since then, he reached out to me shortly after my first surgery. He read my blog and what I had shared, and let me know that he also has Crohn’s Disease and was likely soon to go through similar surgeries. He is the first person who I have spoken with wherein we mutually knew that the other shared the same disease. Until Justin, I had never been able to speak with somebody else completely openly about the symptoms, struggles, decisions, and concerns.  His disease is unfortunately worse than mine and he’s having serious struggles right now, so he’s constantly in my thoughts. We have been able to talk about the struggles, share opinions, and help each other out. Since he’s soon headed to surgery (his surgery will be 4 days before my surgery #2), timing has been perfect to allow me to share details about my surgery, recovery, and ostomy experience with him.  It has been greatly beneficial to share this with somebody who understands first hand and who has dealt with the same issues. He’s back in the hospital right now because his symptoms are so bad, so please send good thoughts for his well-being. I felt proud today when I saw that he shared via Facebook post that he has Crohn’s and an upcoming procedure. It was tough for me to share this so publically, but it has been full of positive feedback and good outcomes. I am happy that he can now feel the same things.  We’re planning to get together when I am in Green Bay for Christmas, and I am looking forward to this.  We will be a comical duo as we’ll both be gimping around in our mid-30s, with our ostomies, a couple weeks into our post-surgery recovery period.  Watch out, Green Bay! I’d like to think that my general optimism and positive outlook on things has rubbed off on him and helped to make his struggles a little more bearable. We will both get past the worst of these diseases.

>>Holidays<< While Target and Wal-Mart may have said this many week ago, I can now say that they approach! With surgery #2 on December 7th, my wonderful mother is again coming out to Colorado to be with me for surgery, my days in the hospital, and my start of recovery. I am a lucky son to have her.  About 2 weeks past my surgery, we will be driving back to Wisconsin together so I can get there for the holidays.  I will be in Green Bay for about 1.5 weeks and over Christmas. It is also looking like Ben & Kate and Kendra, Joe, Ella, & Griffin will also be back in GB for Christmas. It has been quite some time since all of us have been together in the same city, so it will make for a special Christmas. I am so excited for the spirit of the season and the togetherness. And gingerbread cookies. I plan to head to Milwaukee area for New Year’s to spend time with Adam & Angie. I’m hoping for a chance for a Madison visit before heading back to Boulder, depending on how timing of everything works out.  I love this holiday season and can’t wait.  All I ask is that the weather demons keep the roads generally clear and navigable for all the upcoming driving.

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>>Team Challenge<< I have exciting news to share.  As another great outcome of my blog and sharing my story, I was contacted by Kat.  She’s the team manager for Team Challenge’s Ironman team. Team Challenge is the endurance training/fundraising branch of The Crohn’s and Colitis Foundation of America (CCFA).  She’s building a team to train for and participate in Ironman events in late 2016. I will be the team honoree for the 2016 season. It was an easy YES when we spoke about this. The team already has 65 participants, many also afflicted with GI diseases.  I am excited for the opportunities to continue to share my story, motivate people, and to share the exciting journey to Ironman along with the fellow team members. This is ultimately the perfect forum to help fundraise for an organization fighting against the exact disease that I am battling.  I already planned to return to triathlon training as the body allows following my final recovery after surgery #3, so this gives me even more motivation and excitement. While I’ll lock in my decision after surgery #2, I also plan to use this opportunity to join the team not just as an honoree but also as an athlete in one of the Ironman events. I’m very excited for details around this to further develop as we move into 2016, so stay tuned for much more information about Team Challenge and CCFA.

And like that, a ton of words just poured out from my brain onto the screen over the past 130 minutes.  In atypical fashion for perfectionist Luke, I’m not even going to spend time to edit what I wrote. I also need a snack and an episode of Star Trek before bed, so no time to treat this like a college paper. Excuse those typos and grammar snafus, folks.

I’ll close with some words about how I am feeling deep down: Even when there seems to be a cloud of bad that surrounds us, focus on that silver lining. There is so much potential in life. So much in store for the future. So much to say. So many races to be had. So many personal victories yet to come. I live for these victories, whether big or small. These may not even be victories that matter to other people or are even worth speaking about, but they are victories that matter to me. They produce challenges that make me stronger and give me the mental clarity to take control of my reaction to life and stay positive and optimistic. They make life enjoyable to live and give me drive to keep challenging myself. I am so excited for what is to come.

The Next Challenge is Upon Me

Posted: September 27, 2015 in My story

It’s come quickly and is here. My first surgery is tomorrow, so I’ll share a few words. I’ll be at the University of Colorado Denver Anschutz Campus for the surgery, which begins tomorrow morning at 8:30 am MST and is expected to last 4-5 hours. A lot has been going through my mind and my heart has been racing a few times today, but overall I’m doing well. It’s time. I’m done living in this manner and am ready to move forward toward a greatly improved quality of life.

As I approach surgery, I liken it to my recent Ironman. It’s another challenge that I will get through. My experience leading up to and then completing Ironman was incredible. I just watched my WKOW interview again for some inspiration to reinforce that I am in control mentally, will persevere, and will become a stronger person with this experience.

Link to the video interview: WKOW interview (http://www.wkow.com/story/29999373/2015/09/10/athlete-wont-let-crohns-disease-stop-him-in-ironman-wi)

I’m expected to be in the hospital for 4-5 days before heading home toward a few weeks of recovery and downtime.  I will have plenty of time on my hands, so I plan to be updating this blog and Facebook. As I look back to a mere three weeks ago when I made the decision to create and share this blog, I am very happy that I chose this route. I have been inspired and motivated by the feedback, positive comments, and overall feeling of love. I am very excited to have more time to post to this blog and to share my story with you. Stay tuned for updates after my surgery.

How to easily follow my story:

  1. Select the “Follow” button to the right. This will send you e-mails whenever I publish a blog post.
  2. Like “Luke vs Triathlon” on Facebook. I will use this as a venue for updates and also automaticlaly post to that page when a new blog entry is written.