Aquabike Race Report

Lake Tahoe is probably one of the most beautiful places I have ever thought about doing a triathlon. Even with some haze from the fires in Northern California, the setting was perfect. Small mountain town, huge, clear, freshwater lake, and my Team Challenge family!

On Saturday, I did a pre-race shakeout swim with some lovely IBD warriors - boy was that water cold, but it felt good! We had our inspirational pasta party that night, where I was able to share my story and thank everyone for racing on behalf of the 1.6 to 3.1 million Crohn's and Ulcerative Colitis patients (also, PASTA BUFFET!)

Sunday morning came quickly, though I was able to get some relaxing shut-eye before waking up at 4am. I did some stretching, got dressed and bundled up as much as I could before heading out into the 40 degree morning. No bears stole my breakfast from the hotel lobby, so I enjoyed part of a pastry, a banana, and a couple bites of yogurt. (Side note, who peels hard boiled eggs before serving them?!)

We packed up the car with my bike and transition bag, and left the hotel at 5am to get to transition when it opened at 5:30. I got everything set up pretty quickly, all that was left to do was stay warm until it was time to put my wetsuit on. My toes, nose, and ears were all freezing, but I knew the water would be warm(er than the air). At 6:40, I went to put my wetsuit on, then headed on down the hill to the swim start. When I got to the start, I realized I forgot to leave my flip flops at the swim exit, so my amazing sherpa (Christina) took them over for me - and held on to my warm jacket as well.

I got in and did a little bit of warming up, but the water was cold, and any time part of my body would leave the water, the air would make it even colder, so I just tried to keep moving. Of course the swim start was delayed about 20 minutes, so I spent about 30 minutes in the water trying to keep warm. I met some people, found my Team Challenge ladies, smiled for a couple pictures, did our TC cheer (What do we do for fun? Swim, Bike, Run! TC Tri! Wooooooo!), and then it was time to start!

There were probably 50-60 people in my wave, about 15 were women, the rest men. It was a crazy start, I got kicked, kicked some people, may have accidentally swam over a bunch of people... and finally made it out to the first bouy about 250 yards from the start, where I was finally able to find some calm water. I got into a rhythm, and tried not to think about how cold the water was. Sighting 3/4 of a mile away was pretty tough, but as I got closer to the turn, I was able to straighten out. The lake was super clear and blue, so I just focused on enjoying that - and the clear, non-salt, non-dirt-y, non-icky water.

At the first right turn to start to come back in, I saw that there were a couple people in front of me - but I couldn't see anyone behind me except the one person right on my feet. Finally, I made it to the last bouy (the one left turn), and headed the 200 or so yards to the finish, ran up the "stairs" and up towards transition. Christina found me, pointed out my shoes to me, and joined me in the run up  the hill to transition. I saw the Team Challenge cheer squad right before the crazy climb, and they were all cheering like mad! Christina told me I was the first woman (and 3rd person) out of the water - though the person right on my toes was also a woman.

Swim: 1.2 miles; 28:58; 1:22 / 100 yd pace

Transition was slow. I had to climb that darn hill first, and then grab everything I needed for my long, 4-5 hour bike ride. I took my time drying my face, feet, and hands, put on my socks, shoes, helmet, gloves, and grabbed my food and phone, took a bite of a Luna Bar and a couple swigs of Gatorade and water, and was off.

T1: 7:42

And then I was off on the bike! I started my watch, which was supposed to go off every 10 minutes to remind me to hydrate. Of course, my wrist was completely numb from cold, and then the road was a little bumpy, so I never actually felt it go off... The bike course was 3 out-and-backs, two to the right (2 x 16 mile laps) and one to the left (1 x 24 mile lap). The first 32 miles were relatively flat, maybe 1000 ft of climbing total. I was a little bit cold on the first 8 miles, as I had elected to leave my warm cycling clothes in transition. I dried off pretty quickly, and enjoyed the full-sun parts of the course. As I was going, I made sure to thank all of the volunteers, especially the ones directing traffic so we didn't get hit by cars at the turnarounds! As I came in on my first loop, I saw where the aid station was for the second loop, and decided to make a pit stop there to have some nutrition and water. While there, I ate another bite of Luna Bar, took a swig of Gatorade, and refilled my water bottle. After the last turnaround (at about 25 miles), I stopped for another fuel and rest break, and enjoyed the view of the lake for a couple minutes. I didn't want to take another break until I had started the climbs of the last 24 mile lap.

I sped through miles 25-32, saw Christina where the two loops met, and started climbing. The good news is I figured I would take about 2 hours on the first 32 miles, but it was actually closer to 1 hour, 45 minutes (~ 18 mph).

I realized that I needed additional nutrition to make it up the climbs ahead, so I stopped partway up the first little hill for another bite of Luna Bar and some Jelly Belly Sports Beans, then went back to climbing up hills. I had trained for hills, but in retrospect, probably could have done additional hill work to make those climbs easier. There were six main climbs on the route, two Cat 4 and four Cat 5. The first was a Cat 5... to get the legs warmed up? I made it up and over that one, was rewarded with a short downhill before starting the steepest of the six climbs, one of the Cat 4s.

I stopped about 1/2 way up the hill for a quick break, then continued on. About 1000 ft from the top, my legs were screaming louder than my head, so I hopped off and walked my bike, following one of the guys. Christina was at the top of that hill, so I took a longer break to hydrate and refuel - and get my arms sunscreened-up by my sherpa!

Then it was time to enjoy the downhill to Emerald Bay. I saw a lot of my TC teammates while I was on the descent (they were climbing the other direction for the Olympic distance tri), and I knew if they could do it, so could I! Emerald Bay was pretty busy with tourists, both in cars and on foot, so I wasn't able to enjoy the downhill as much as I had hoped, and had no momentum to start the 1 mile Cat 5 climb to the top. I had to walk the last 1000 ft again, but was able to pass one of the guys who was also walking his bike. From there, it was all flat or downhill to the turnaround, so I had a lot of fun with that, even with the sharp switchback turns. I finally made it to the bottom / turnaround / aid station, so I stopped for a nice long break. I knew I only had 12 miles left, but had to get my head on-board with making back.

After about 15 minutes, I was ready to get going again. The longest, hardest climb was ahead of me - a 3.3 mile, Cat 4 climb. The first half of the climb wasn't so bad, I found a good gear, got into a good rhythm with my cadence, and pushed myself up the hill, including passing a couple guys who had to stop to walk. When my brain started to question my sanity, I started listing all the reasons I was doing this crazy thing - the names of everyone I know who has Crohn's or UC, their caretakers, and the other 1.6+ million people who have IBD. That got me through most of that climb, until I got back to those darn switchbacks, which, at the turns, were probably 10% grade or more. So, I hopped off the bike one more time to get myself over the top, where there was a photographer waiting for me. I smiled while still walking - I didn't want to change my strategy just for a photo op. ...Okay, I stopped to take this picture:

On the way back down into Emerald Bay, I was following a long line of cars and a motorcycle, so once again didn't get to enjoy the downhill speeds that I love so much, nor did I get the momentum to get me up the second to last Cat 5 climb. I knew Christina would be at the top of that  hill, so I got into gear and just started going. I had to chunk the hill to get up as far as I could - first to a cluster of trees, then to a sign, then to the next cluster of trees, and then finally, I decided once I got to the next cluster of trees, I would walk the rest of the way. Christina met me and walked with me for a bit, and then I decided to hop back on at the "Share the Road" bike sign. From there, I knew it was (pretty much) all downhill, save for one more Cat 5 climb. I savored the amazing downhill (especially the hill that I couldn't make it up) - I was probably going close to 40 mph, keeping up with the cars and the speed limit.

Right before the last climb, the Race Director came up to me on a motorcycle to make sure I was okay, and to let me know I had to finish the bike by 12:50pm. I tried to look at my watch, but it wasn't showing the time, only where I was in my 10 minute hydration splits. I told him okay, and knew that I probably needed to kick it into higher gear to make it back in time. I needed a break close to the top of the final climb, but knew I couldn't stop if I wanted to finish, so I hopped off the bike and did some speed walking while holding my bike AND checking my watch. It was 12:43. I had 7 minutes to make it back to transition. I knew I was close, relative to the 56 mile total, but didn't know exactly how much I had left, so I jumped right back on my bike and sprinted toward the finish.

Lucky for me, it turns out I was just over 2 miles from the finish, and it was mostly downhill. As I came in to make the turn toward transition, the volunteer warned me about the sand trap between the road I was on and the bike path I was supposed to take - and she walked with me across the sand to make sure I didn't fall. At that point, I didn't know if I would make the cut off, but knew I had to try, even on the rooted-out bumpy bike path. I turned onto the road toward transition, was yelled at by a volunteer who was picking up cones that I needed to stay to the left of the cones he was picking up, almost ran over a guy walking his dog (had to yell pretty loud to get him to move, because I wasn't going to slow down!), and came cruising toward the dismount line. I hopped off my bike right at the line and started running for the Bike In (where the chip reader was), but the Race Director was there waiting, and asked me what time it was. I stopped to check my watch, and saw that it was 12:49!

I yelled "12:49! I made it!" and started running again. After I crossed into transition, I knew I made it, and was able to relax, but still wanted to make sure I crossed the finish line (I had to for it to count, even though it wasn't factored into my time). I quickly racked my bike, pulled off my shoes, put on my flip flops, and started speed walking toward the Run Out. The race director yelled that he was going to let me go out on the run, but I told him I was only doing the Aquabike, so I was done. Then a volunteer came walking toward me and told me they had just closed the Run Out (in my head, I said "That's fine, I'll jump over the barrier"), he directed me to go out the side of transition instead. I FINALLY made it out of transition with all the direction, and went to cross the finish line! I had to walk back about 20 ft to cross all of the timing chip readers before I could officially "finish" and receive my medal!

Bike: 56 (or maybe only 55?) miles; 4:52:50; 11.5 mph pace

I officially came in 29 seconds before the course cutoff: 5:29:31!

I am so glad that I didn't give up at mile 44. Crossing that finish line with my Team Challenge family was a great feeling, as was coming in just under the cutoff! Would I do it all again? Absolutely. Will I do a half-distance aquabike again? Sure. Will I do that exact race again? Probably not. :)

You can still support my race fundraising efforts here!

A special thanks to my sherpa / spectathlete who also volunteered on race morning! Lots of high-fives to Christina!

Life with Crohn's | Part 7: Living Life & Managing Flares

What is it really like to live with Crohn's disease? 

I've had this disease for 10 years, and can only begin answering this question. Symptoms and lifestyle change daily, and are different for everyone.

Pain. This was my first Crohn's symptom, and continues to be the constant reminder that I have an autoimmune disease. I first went to the doctor for Crohn's due to pain in my lower right abdomen - right near the appendix. I almost always have some level of pain, but generally am able to ignore it if it is a 4 or less on a 1-10 scale. Some days I venture into the 6-7 range, which is pretty unpleasant. When I went to the ER for my surgery, I told them the pain was about an 8-9, but keep in mind that I couldn't stand up straight or walk, and I had a tear in my intestine!

Digestive issues. These are the main symptom most Crohnies experience (typically 💩, 🤢, and 🤮). Unless I'm having a really bad flare, I have been fortunate to avoid these for the most part, not to have these symptoms very often. Another related symptom here is loss of appetite. This happens on occasion, and is tough to deal with. I know I should eat, but am not hungry, or am worried that anything I eat will make me feel sick, so I just don't eat.

Fatigue. I am tired. All the time. It's a miracle I have the energy to train for triathlons (in fact, some days, I don't). Part of this is related to anemia, though my current iron levels are good; Crohn's is just an exhausting disease. I take regular naps every Sunday afternoon, a weekly designated time called Kitty-Kelley Nap Time (Pinky Kitty naps with me almost every time). I occasionally have to take naps during the week too; something that has become much easier now that I work from home. Some nights I also have insomnia - I am exhausted and just want to sleep, but my mind is moving a million miles an hour, or I am restless, or stomach discomfort is keeping me up, resulting in a tough-to-end cycle of fatigue.

Weight Gain/Loss. I have no control over my weight. I won't eat for a week (aside from clear liquids), and will lose no weight, but then when I'm back to eating, suddenly will lose 10 pounds without thinking about it. Or, I'll start exercising and gain 10 pounds. In fact, my body shape completely changed after my surgery, and I had to buy nearly a whole new wardrobe, even though my weight was relatively unchanged.

Diet. I am not technically on any dietary restrictions as a result of my disease; however, what I can eat without experiencing symptoms can change at the drop of a hat. Right after my surgery in 2013, my doctor told me to eat anything and everything I wanted; however, every time I at a salad/lettuce, I would have some symptoms. I stopped eating salad for about 4 months, then tried eating a salad one day, and was fine. Not long after my diagnosis, I realized that eggs made me sick more often than they didn't. It look me almost 5 years, but I finally realized egg yolks upset my GI track. Now I do what I can to avoid egg yolks, though sometimes I fail - back in March, I had a nutella & fruit crepe, which ended up leading to a pretty miserable, flaring week for me.

How do I manage flares?

When these symptoms get out of control, I have to take measures to avoid a hospital stay. As much "fun" as those are, I would prefer to skip them as much as possible in the future. Below are some of the strategies that I use to try feeling better, though there are some instances when I continue my lifestyle without any changes and just suffer through the consequences...

Medication. This is one of the biggest ways to manage the disease. Even when in remission, Crohnies have to continue taking a whole pharmacy worth of drugs to keep it that way. That is why I ended up with a flare earlier this year - the doses on my meds were messed with (lowered), and I didn't realize until I started to feel sick. Now that I'm back on the proper dose, things have calmed down.

Diet. When I feel the discomfort of a flare coming on, my first line of defense is watching what I eat. Clear liquid diets are the most useful (jello, broth, water, non-pulp juice) to help calm my angry intestines. After things start to calm down and I start to get hungry, I'll start easy with the BRAT diet (bananas, rice, applesauce, toast), then work my way up to regular food again after a couple of days.

Sleep. Some days I just need to sleep. Or relax as much as possible. Sometimes I'll work while sitting on our super comfortable couch, getting in as much relaxation as possible. I'll take mid-day naps, or go to bed at 9pm and wake up at 9am, sometimes feeling a bit better (though sometimes not).

Mental games. I try to keep my outward attitude about my disease positive. It is not easy to live with Crohn's, but attitude makes a HUGE difference. I have a lot of fun making jokes and being very sarcastic. I always talk about how much "fun" it is to have Crohn's, how "excited" I am for all of my tests, and how much I "enjoy" taking all of my meds. It helps to trick my brain, and also makes for a generally better experience all around. The outward attitude is contagious to my inner thoughts, which are sometimes less cheery.

All in all, this is a tough disease. Symptoms change daily, and without good strategies to get through it, I'm sure it is even more miserable. That's why I try to focus on things I can control: attitude and listening to what my body is telling me. I've learned that ignoring the symptoms doesn't make them go away; only addressing them will help.


Something else that will help? Finding a Cure!

The Crohn's and Colitis Foundation is committed to funding research that finds a cure for these terrible diseases. This year, I am once again taking part in Team Challenge. I am racing the Lake Tahoe Triathlon at the end of August for my 10 year anniversary of being diagnosed. You can support my fundraising efforts here.

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Stay tuned for the final installment of this blog series (Part 8): Advocacy

Life with Crohn's | Part 6: Coming to Terms

"When I was diagnosed, I didn't think it was going to be a big deal. I was given medications and was told they would work. However, that wasn't my case. It ended up becoming much more significant in my life, and I was spending every month getting an infusion in the hospital."

-Kathleen Baker, Olympic Swimmer

Those could have been words straight out of my mouth. When I was diagnosed, I had never heard of Crohn's before, and really didn't think it was a big deal. I kept my diagnosis mostly to myself, not for any other reason than I had no idea how it would come to impact my life. Since I was diagnosed in college, the only people who knew were my parents and my swim coach. Eventually, I told my roommates, but only because I needed them to drive me to appointments and tests - even then, it didn't seem like a big deal.

Kevin (then my boyfriend, now my husband) was the first non-family, non-roommate, non-swim coach who I told. I remember the scene as if from a movie - we were at Downtown Disney in LA, off to have some fun adventures. My phone alarm went off at 2pm, reminding me to take my medication. This had happened a number of times before when we were together, but on this particular occasion, Kevin asked why I had to take the massive blue pills in my hand. My response? As if it was no big deal, "Oh, I have Crohn's disease." Kevin: "Like Kurt Kobain?" Me: "Uh, I don't know, I guess so?"

The first time I told someone about my disease more out of necessity than family ties or friendship was right before going on a 12-week tour of the West Coast with Liberty in North Korea. I was to live out of a 15-passenger van with two other people, sleeping on floors, in spare beds, and sometimes even in the van. I figured the people I was traveling with should know that I had Crohn's, even though it never really impacted my day-to-day at the time.

The day finally came when I was to tell my team - I was so nervous, I thought I might cry. I tried not to make a big deal out of it, because I didn't know what to expect from their reactions. I finally just came right out and said it: "I thought you should probably know that I have Crohn's disease." I don't remember much of the conversation, but I do remember everyone being very supportive, asking questions, but not too many questions ("What is Crohn's?" "How will we know if you are struggling with it?")

Luckily, nothing major happened while I was on the road, though after we got back and I started working in the office full-time, I had my first hospitalization. 

The more I told people that I had Crohn's, the more comfortable I was with the diagnosis. Every time I talk about it, people are very understanding, and nearly every time, their response is something like "Oh, my <so-and-so> has Crohn's!" or "Tell me more, what is it, how does it affect you, and how can we support you?" I know that Crohn's can strike it's ugly head at any time, so it is important to keep the people I interact with up-to-speed, so that I'm not suddenly in the hospital one day and no one understands why.

I know that Crohn's disease will always be a part of me (pending a cure), but I can't let it keep me down. I only have control over a few things, including my attitude and mental game. Some days it's hard to stay positive, especially when I'm in a lot of pain or when I'm stuck in the bathroom (or both!). To keep me going, I always look for the bright side, or use some serious sarcasm to help break through (an especially effective tactic during procedures & tests). 

Two years ago, in 2016, I finally joined a group of amazing people training for endurance events (marathons, triathlons, bike races, etc.). I knew about Team Challenge since around the time it was started in 2008 by the Crohn's & Colitis Foundation, but never worked up the courage to join in the fun before that. After my first week with the San Diego team, I realized what I had been missing - a group of people who understood what I was going through and who were trying to make a difference  for the 1.6 million other IBD patients - by fundraising for a cure and to for improving the quality of life for those diagnosed with IBD, such as hosting support groups.

After 10 years of having the title of "Crohnie," I am finally at a point where I can openly talk about my experience: where I have been, and where I hope to be in the future (with a cure!). It has not been an easy journey, but I am grateful that it has brought me my Team Challenge family, and some "exciting" stories of  💩 and hospitalization.

Help others come to terms with their diagnosis!

It takes time, but also a strong support network like that provided by the Crohn's & Colitis Foundation and Team Challenge. This year, I am once again taking part in Team Challenge. I am racing the Lake Tahoe Triathlon at the end of August for my 10 year anniversary of being diagnosed. You can support my fundraising efforts here. 

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Stay tuned for Part 7: Living Life & Managing Flares

Life with Crohn's | Part 5: Procedures & Tests

There are a number of procedures and tests used to diagnose, check, and manage Crohn's disease: colonoscopy, MR Enterography (a fancier MRI), endoscopy, blood work/lab tests, CT scan, and more! Three of these tests involve drinking some sort of nasty beverages... read all about it below!

MR Enterography
I had my first MRE in fall 2012. My doctor at the time was concerned with the state of my Crohn's disease, and wanted me to get a second opinion at Cedars Sinai. The doctors there knew that the main location of my disease (a couple inches into the terminal ileum) was tough to get to via colonoscopy (see below!), so they wanted to try a different way to see my disease, and the extent of the swelling. Amazingly, you can see everything with an MRE (a special type of MRI using barium and contrast dye for a clearer image. Barium is administered by drinking some thick, milky, salty substance, contrast by IV). It was there that they saw fistulas forming, and how inflamed my gut was.

Since then, I've had an MRE almost every year, typically around mid-July. In fact, I am due for my next one tomorrow! It is a great way to visualize what is going on, and my doctor is now able to make decisions based on what she sees in those images.

Blood Work / Lab Tests
Every 3-4 months, I have the privileged of getting poked in the arm and have a couple vials of blood stolen from me to check for important things like CBC (Am I anemic? Do I have increased/decreased red and white blood cells?), Liver Panel (Is my medication ruining my liver?), and vitamin levels (Is my body absorbing nutrition?). Once a year, I also have to have a TB test to make sure I don't have tuberculosis, since I am more at-risk of contracting it while on my immuno-suppressing medications. When things are going really bad, my doctor may also order a stool sample to see how things are going at the other end. <sarcasm> What Fun! </sarcasm>

CT Scan
A CT Scan is a quick and easy(ier) way to see my disease with imaging. This typically involves drinking barium (or getting a barium enema - which I do not recommend) as well to help the radiologist see the inside of my intestines better in the images. CT scan was the test used to first diagnose my Crohn's, and is the test they used both times I went to the ER to get a quick view of the disease.

Endoscopy
This test is the easiest of them all. I've only had one, and it was only to check out as much of my GI system as possible to ensure there weren't any additional issues as a result of the Crohn's. Essentially, the doctor knocks you out with some good meds, then sticks a camera down your throat to see the inside of the esophagus, stomach, and first part of the small intestine. As a result of the procedure, I was diagnosed with a hiatial hernia (where the valve between the esophagus and stomach does some funny things), likely the cause of some of my crazy hiccup attacks, as well as some minor stomach ulcers.

It's the one we've all been waiting for... the COLONOSCOPY!
As a young old person, I had my first colonoscopy at age 20, a procedure most people have around age 50 (if you're 50 or over and haven't had one yet, go see your GI!), then every 10 years after that for colon cancer screening. Including that one when I was 20, I have only had 4 colonoscopies (about 1 every 2-3 years). This is mostly due to the location of my Crohn's - it is higher up than a typical colonoscopy can reach, so it is a less useful procedure for me.

I'll spare all of the gory details, but I will tell this one story:
Colonoscopy prep involves drinking 64 ounces of laxatives, and you aren't allowed to eat solid foods (clear liquids only!), and no colored food that might discolor your insides (e.g., reds, blues). Essentially, for 24 hours before the procedure, you are stuck drinking lots of water, apple juice, chicken broth, and lemon-lime flavored beverages / jello / popsicles. I was so sick of lemon-lime (mind you, the prep is usually a salty lemon-lime flavor too) that I sent Kevin out to find anything non-colored and non-lemon-lime flavored. he came back later with BANANA flavored popsicles! It was probably the best thing that has happened to me while prepping for a colonoscopy!

Also, I'll share a few colonoscopy prep tips:

• The day before, eat a very light meal (I recommend things like clear liquid soups, bananas, rice, applesauce, toast, etc.) - do not eat a Quiznos turkey and cheese sandwich, you will be in for a long night
• Make some Jello in advance (non-lemon or lime flavors)
• Prepare some chicken broth (if you're not at home, just heat up water in a coffee pot & mix it up!)
• Buy some good air freshener (I recommend Lysol Neutra Air spray)
• Buy some good wet wipes (or if you have a really sensitive bum, preparation H wipes)
• Plan to spend a lot of time on the toilet

Help reduce the need for all of these procedures and tests!

This year, I am once again taking part in Team Challenge, participating in the Lake Tahoe Triathlon at the end of August for my 10 year anniversary of being diagnosed. You can support my fundraising efforts here. All funds go to the Crohn's & Colitis Foundation, dedicated to finding a cure!

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Stay tuned for Part 5: Coming to Terms

Life with Crohn's | Part 4: Doctors

I have always advocated that patients should find doctors with whom they are comfortable and trust. I had to take my own advice this year to switch doctors, even though it means traveling out of state for quality care. In addition to a Gastroenterologist (GI), a Crohn's patient has the privilege of needing a whole team of doctors!

From 2008 to 2017, I was lucky with my doctor selection. When I was first diagnosed with Crohn's, I was living in my hometown of Los Alamos, New Mexico, a town of 20,000 with one local GI, Dr. Bradley Rowberry (Los Alamos Medical Center). He was my GI for about a year until I decided I wanted to live in California full time.

Upon making that decision in 2009, I set about finding a GI in Thousand Oaks, California. It amazed me how many options there were for GIs in and around the area - I had never had so many choices for doctors! I essentially choose a doctor at random after checking reviews (back then all I had was doctor office websites and healthgrades.com - no Yelp, no Google reviews, no friends with IBD...). I got lucky in my selection of Dr. Gilbert Simoni (Advanced Gastroenterology). He and his office staff elevated my care and had strong knowledge of how to treat Crohn's. I elected to stick with him as my GI, even after I moved to Torrance in the fall of 2010. He was still my doctor when I was hospitalized in 2011 in Torrance, and after I moved to San Diego for grad school at UCSD.

In 2012, Dr. Simoni referred me for a second opinion at Cedar's Sinai in LA. I drove up to LA from San Diego one morning to see Dr. Stephan Targan - I was an hour late due to traffic, despite leaving at 5am. Clearly that wasn't going to work out, but I only had one additional appointment there for a test (more on that later). It was after that that I started taking Humira.

When I was hospitalized in 2013 in San Diego, it became clear that I needed a local GI. I couldn't continue traveling up to LA, let alone Thousand Oaks, to see my GI. While I was in the ICU, one of my nurses was also a Crohn's patient, and recommended Dr. Alissa Speziale at Sharp Reese Stealy. I was able to schedule an appointment with Dr. Speziale quickly (after crying on the phone to the scheduler the day I was released), and quickly knew why the nurse had recommended her. She had incredible bedside manner, and truly cared about my well-being! I continued seeing Dr. Speziale during my time in San Diego until we moved to Phoenix in 2017.

Dr. Speziale was able to refer me to Dr. Shabana Pasha at Mayo Clinic in Arizona; she is a specialist in the exact disease issues I suffer from with Crohn's (that is, inflammation of the small intestine). I saw Dr. Pasha once, then had a follow up with one of her residents... and then moved to Las Vegas.

Let's just say that Las Vegas is not just a climatic desert, but also a doctor desert! There are very few GIs to choose from, and from my experience and the stories of others, I am not impressed by the selection. Any good doctors have terrible office staff - a crucial part of a successful practice. 

Let me paint you a picture: It was my 30th birthday. I had Shingles (because why wouldn't I?), as well as a UTI (again, because why wouldn't I?). I was waiting on my doctor's office and insurance company to approve a medication (Budesonide) that would help me to feel better, after having mistakenly received two half-doses of my main medication (Remicade). I called my insurance company to get an update on the status of  the prior authorization, only to learn that the necessary paperwork had not been submitted a week before, as I had expected.When I called the GI office's prior authorization specialist, she informed me that she had been waiting on the doctor's signature, and that she had just received it, and so would submit the paperwork. Later that day, I was looking at my insurance online account, and discovered that the medication I was trying to get approved didn't need authorization if the doctor prescribed it correctly!

That was the last straw after a string of other mishaps:

• It took 10 weeks for my Remicade to get approved (should have only taken 5-10 business days).
• I received the wrong dose of Remicade (400 mg vs 800 mg). Twice.
• My second doctor's appointment lasted 3 minutes, and the only time the doctor made physical contact with me was to shake my hand. The rest of the appointment was spent by him telling me I couldn't get pregnant without telling him first (mind you, I had not brought up pregnancy or kids with him at all).
• My third doctor's appointment was spent with me asking him to help me feel better due to his prescribing the incorrect dose of Remicade.

After a long, teary conversation with my mom (on my birthday) about what to do, I determined that I needed to go out of state to see a doctor. The only other doctor I would consider seeing in Las Vegas was part of the same practice as my current doctor, and so they shared office staff. I couldn't do that to myself.

My three main options that I was considering were Dr. Simoni in Thousand Oaks, Dr. Pasha in Scottsdale, or Dr. Speziale in San Diego. I elected to go back to Dr. Speziale, easily my favorite doctor, and seeing her would give me the opportunity to go back to San Diego every couple of months! 

So aside from a quality GI, who else is on my medical team?

• Primary - someone who is willing to work with other doctors on the team to coordinate care
• Gynecologist - because lady parts are important and closely connected to the gut
• Dermatologist - because Crohn's patients (especially those on certain medications) are more susceptible to skin cancer
• Hematologist - to address anemia
• Endocrinologist - to check bone density (certain medications can cause bone deterioration)
• Surgeon - someone who can fix you when the medications fail
• Home Health nurse - to administer Remicade via IV
• Pharmacist - to give me the rest of my medications
• Cigna TheraCare specialist - someone from the insurance program for people on specialty medications or with complex diseases

Let's find a cure for Crohn's!Today, I recommitted to participating in the Lake Tahoe Triathlon with Team Challenge on August 26th. You can support my fundraising efforts here.

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Stay tuned for Part 5: Procedures & Tests

Life with Crohn's | Part 3: Medications

The first time I told someone I had Crohn's disease outside of my close group of friends who originally knew about my diagnosis was just a couple weeks after Kevin and I started dating. We were standing outside his car in the Downtown Disney parking lot, and it was 2pm. My phone alarm went off to remind me to take my medication. I didn't have any water with me (as usual), so I popped two bright blue horse pills in my mouth and swallowed them dry. Kevin had seen this a couple of times, but on this particular occasion, asked what I was taking and why. I told him I have Crohn's disease, and had to take these pills 3 times per day. His reaction? "Crohn's disease? Like Kurt Cobain?"

Having a chronic illness means I've taken a lot of medications over the past 10 years, some more innocuous, and some more intense. I've been on everything from steroids to chemotherapy drugs to antibiotics to biologics, and it seems like everything in between. Below is an exciting tale of my drug cocktail (and costs) over time!

Prednisone (steroid)
Total Cost: $154 / 30 days
Cost with insurance: $154 / 30 days

Prednisone

The first medication I was prescribed was a steroid, Prednisone, to help reduce the inflammation in my small intestine. Prednisone is probably my least favorite med I have taken for Crohn's, not because the meds themselves were awful, but rather because of the side effects. First, I had "moon face," or swelling in the face (and other body parts) from water retention. This is a common side effect of Prednisone. The other side effect was the crazy mood swings. I don't remember specifics, but I do remember feeling crazy and having no control over my emotions or reactions, which for a 20-year old girl about to travel abroad for a semester, was not a fun time. The longer-term effects of these pills is osteoperosis. I had to take Prednisone for 20 weeks, starting at 20mg for 4 weeks, then dropping down the dose by 2mg every week until I reached 0, which was almost the entire time I was living in Salzburg.

Pentasa (mesalamine)
Total cost: $3,257 / 30 days
Cost with insurance: $70 / 30 days

Pentasa

The other medication I took when I was first diagnosed was Pentasa. I was prescribed two bright blue pills, three times per day. From 2008 until 2012, I took those pills with me everywhere I went to take at 8am, 2pm, and 8pm. I had to set an alarm on my phone to remind myself that it was drug time, though about 50% of the time, I didn't have water with me when it was time to take them, so I dry-swallowed 2 big blue pills on the regular, and got pretty good at it. About a week prior to my hospitalization in 2011, my doctor increased my frequency of these lovely pills to 4 times per day (8 pills each day!)

Bifera (ferrous sulfate)
Total cost: $137 / 30 days
Cost with insurance: $70 / 30 days

Bifera

I've always had slightly low iron counts, and have been on and off iron pills since I was a teenager. My iron levels kept getting lower and lower - I was sometimes so anemic that I was ineligible to swim in college and had to do a lot of work to get my iron levels back up. Regular iron pills didn't always work for me, so my doctors would prescribe Bifera, a prescription-strength iron supplement.

Entocort (budesonide; steroid)
Total cost: $1,795 / 30 days
Cost with insurance: $15 / 30 days

Entocort

My first minor flare after my diagnosis happened around 2010. Instead of hopping off to the hospital, my doctor wanted to try a steroid, but not Prednisone, since it is so nasty. These little guys are specially formulated to dissolve as they pass through the small intestine, so they release the medication right where it is needed for Crohn's disease. Of course, doctors always prescribe 3 pills per day (all at once) for maximum effect.

Mercaptopurine (6-MP)
Total cost: $98 / 30 days
Cost with insurance: $0 / 30 days

Mercaptopurine

Next came the more intense drugs. After my first hospitalization in 2011, my doctor first added in Mercaptopurine, or 6-MP, a chemotherapy drug also commonly used to treat Inflammatory Bowel Disease (Crohn's or Ulcerative Colitis). The scary possible side-effects of this medication luckily haven't affected me to this point. I'm still taking it to this day, though on double the dose I started on in 2011 (it was doubled after my second hospitalization in 2013). The one side effect I have really experienced has only been observed in my routine blood work, with some slightly elevated liver levels, though nothing to be too worried about (yet).

Ferric Gluconate (IV iron supplement)
Total cost: $340 / infusion
Cost with insurance: $0 / infusion

Sodium Ferric Gluconate

In 2011, not long after I stared grad school in San Diego, my iron levels were significantly lower than normal (me: 8.7; normal: 11-14; below 9 is critical - no wonder I was so tired!) I started seeing a Hematologist at Sharp HealthCare (Dr. Andrew Hampshire), who prescribed me an iron infusion, since my iron pills clearly weren't working, but we didn't want to go too extreme with a blood transfusion, unless it was necessary. In 2011, I received three iron infusions over the course of three weeks; then in 2012, I received two additional infusions over two weeks when my iron levels were too low again.

Humira (adalimumab; biologic)
Total cost: $2,523 / 28 days
Cost with insurance: $0 / 28 days (with prior authorization)

Humira

In 2012 after a test showing my small intestine had formed a fistula, my doctor wanted to increase the intensity of the medications, and recommended I start a biologic medication. These are the ones you see advertised all the time on TV comercials: Humira, Stelara, etc. He gave me the choice between Humira and Remicade to start. Humira meant I could still take the medications at home on my own, but would have to give myself a shot every two weeks. Remicade, on the other hand, was only every 8 weeks, but I would have to go in to a medical office for a 3+ hour IV. At that time, I elected to go with Humira. Kevin really enjoyed giving me those shots every other Saturday, so I let him do that when he was home, because I hated it. I would rotate my shots from right leg to left leg to left stomach to right stomach, then start that rotation again. After my surgery in 2013, my doctor decided to keep me on Humira; she felt that the reason I had not reacted as well was because my disease was too far progressed. With the major issues removed by surgery, I was able to stay on Humira in remission for almost two more years.

Remicade (infusion; biologic)
Total cost: ~$18,000 / 8 weeks
Cost with insurance: ~$1,500 / 8 weeks (with prior authorization)

Remicade (IV)

Once it was clear that the Humira wasn't working anymore, my doctor originally prescribed me Entivyo, but my insurance company denied the prior authorization, saying that they wanted me to try Remicade first. So here we are. Every 8 weeks, I receive an infusion of Remicade, a 3+ hour procedure, which typically takes place in an infusion center, but since moving to Las Vegas, I have been lucky enough to get a home infusion - a nurse comes to my house, sets me up, mixes the meds, and hangs out with me for 3 hours. The most frustrating part of this whole process has been the prior authorization process. Everyone (doctors, insurance company) has been really slow about getting everything approved, something that has to happen once per year AND every time I move (which has happened a lot in the past 16 months...)

Biologics, Mercaptopurine, and steroids all decrease the immune system, so the main side effect I have from all of these medications is secondary infections... most recently including Shingles, because instead of 30, my body thinks its 75. This drug cocktail serves as a strong reminder that there is no cure for Crohn's disease. All of these medications are designed to keep the disease at bay, but can loose their effectiveness without warning.

Let's find a cure for Crohn's!

This year, I am once again taking part in Team Challenge, participating in the Lake Tahoe Triathlon at the end of August for my 10 year anniversary of being diagnosed. You can support my fundraising efforts here.

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Stay tuned for Part 4: Doctors

Life with Crohn's | Part 2b: Hospitalization 2011

March 12, 2011: 1-year (dating) anniversary with Kevin. We had a celebratory trip to Las Vegas planned, including a 2 night stay at the Mirage, tickets to The Lion King, and other fun! But then the unexpected happened...

Starting at the beginning of 2011, I was working for Liberty in North Korea, a grassroots nonprofit dedicated to helping North Korean refugees, and educating the public about their perils. I was the Booking Coordinator, helping schedule documentary screenings across the country, working 70+ hour weeks, but loved every minute of it.

In mid-February, I started feeling generally unwell, but didn't think much of it. I had a whole slew of doctor's appointments, both for GI stuff and other health issues at the time. The problem was that I was living and working in Torrance, CA, but seeing doctors in Thousand Oaks, CA, an hour or more drive (through LA traffic) away. One of the doctors noticed that I was pretty severely anemic - nothing new for me - but had my GI check for internal bleeding just in case. Lucky me, no bleeding was found...

A week later (March 11), I was in a lot of (abdominal) pain, was feverish, and my mom convinced me that I needed to go to the hospital to get checked out. I had texted in the morning to ask what appendicitis pain felt like, and got a call telling me to go to the nearest ER! I agreed (tearfully) to go. Bridget, one of my coworkers at the time drove me down the street to Torrance Memorial Hospital, and my mom hopped on a plane out to LAX. Bridget took my car to pick up my mom, then stopped by the Nomad house (where we were living) to pick up some supplies and home comforts for me, since I had gone to the ER straight from work.

Torrance Memorial Hospital Emergency Entrance

I spent nearly 11 hours in the ER with Bridget, Kevin, and eventually my mom, starting with drinking what would become a familiar drink, apple juice mixed with barium, so that they could do a CT scan before admitting me. The results showed a LOT of inflammation in my ileum - where my disease was clearly centered.

"Abnormality of the terminal ileum and of the sigmoid colon . . . There are small fluid collections within the pelvis in association which could represent small microabcesses. Thickening of the wall of the appendix. This probably represents reactive edema secondary to the inflammatory reaction within the pelvis rather than representing superimposed appendicitis."

The ER docs started me on IV antibiotics, and I was placed on a "clear, liquid diet," which essentially consisted of water and broth.

On my first overnight in the hospital, my Hemoglobin (blood test for iron levels) went from 10.5 (lower than the typical 12.0-16.0) to an even lower 8.3. There was a lot of discussion about what should be done to address that, as that was a clear indicator of severe internal bleeding. They tested to determine my blood type so they could be ready for a transfusion, then retested my iron levels 6 hours later. Luckily, my levels stabilized had stabilized to 8.8, still low, but not dropping further, so no need for a blood transfusion.

Hemoglobin: a red protein responsible for transporting oxygen in the blood of vertebrates. Its molecule comprises four subunits, each containing an iron atom bound to a heme group.

Other interesting findings from my blood work included:

• Elevated platelet count (692 at admission, compared to a normal range of 140-440);
• Elevated white blood cell count, which went back to normal after 3 days of IV antibiotics;
• Elevated red blood cell count, which remained high throughout my stay; and
• Fun fact: my blood type is A negative.

My first hospitalization was an interesting experience, to say the least. I was in the hospital for 5 days, had several visitors from work, and sadly, had to miss a fun Vegas weekend. This is an extreme version of missing out on activities because of this disease, but I have missed my fair share of fun due to unruly symptoms - but more on that later.

One memory that has stuck with me was about 1/2 way through my stay. I was taking oral pain medication throughout my stay when I requested it. There was one day when I started having severe abdominal pain, so much pain that I was crying. I called for the nurse, who informed me that I couldn't have another dose for at least an hour. I understand why they didn't want to give me a dose early, but boy was that a rough hour before I could get some relief. I just had to GUT IT OUT.

Upon discharge, I was given instructions to continue taking my previous medications, and start taking some new ones. My prescription list was up to 9 different medications - but more on that later. I took a few additional days off of work, worked from home for a couple of days, and then got right back into it. 

Do you want to help those who have been hospitalized because of this disease?
This year, I am once again taking part in Team Challenge. I will be doing a Race in Orange cycling event on April 7 with Tina, then participating in the Lake Tahoe Triathlon at the end of August for my 10 year anniversary of being diagnosed. You can support my fundraising efforts for these two events here.

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Stay tuned for Part 3: Medications

Life with Crohn's | Part 2a: Hospitalization 2013

Today marks 5 years since my last hospital admission!

On February 19, 2013, I was in LA for the PMF semi-finalist assessment, was in grad school, was working on my capstone project, and was not ready for what was coming later in the week.

On February 22, 2013, I was working at the front desk of the pool at UCSD, and for my super healthy lunch, I was eating a bag of Lay's potato chips and a bag of Skittles. I started feeling sick to my stomach, which is a pretty normal occurrence, so I didn't think much of it. Later that night, I was at home, curled up in a ball on the couch from all the pain. Still, I wasn't too concerned. Then the vomit started, around 10 pm. I had Kevin call my boss to say I was sick and would not be at work the following morning - there was just no way I was going to be okay by then. I tried to go to bed, but was in such severe pain, that I moved to the reclining couch and "slept" there for the night.

On February 23, 2013, I woke up still feeling sick. I tried to eat some saltine crackers and drink Sprite. I felt extremely feverish, so I took some Tylenol as well to bring down my fever. I even called my doctor (on a Saturday!) to see what I should do. He said it sounded like a case of gastritis, and to just let it run its course. That night, I was still in severe pain, and had to "sleep" on the couch again.

On February 24, 2013, I was still feeling awful, but I was in grad school, and had to press on. Ashley, a friend and classmate came over to work on a group project. Before she arrived, I unlocked the door so that she could let herself in, since I couldn't even stand up straight, let alone walk to the door in a reasonable amount of time. We worked on a group project for a couple hours before she left. My doctor called me to check in that night. When he heard that I was still feeling sick and in severe pain, he recommended I go to the closest ER. Unfortunately, my doctor at the time was in Thousand Oaks, and I was living in San Diego, so I couldn't go to a hospital where he had privileges.

I packed a bag, but I knew I couldn't drive from all of the pain, so I waited for Kevin to get home from work (I think he was working down at the Naval Base) so that he could drive me. We got to Sharp Memorial Hospital at about 8 pm, and luckily, the ER was relatively empty. I sat outside on a bench while I waited for Kevin to park the car, since I really couldn't walk at that point. When I checked in to the ER, they called a wheelchair over immediately and took me to a room - no wait at all when you are doubled over with abdominal pain!

SMH Emergency Entrance

In the ER, I had the "privilege" of drinking apple juice mixed with barium for a CT to see what was going on. They knew I was having a Crohn's flare, but needed to see if there was just swelling, or if it was worse, such as a blockage. That CT scan was much better than my original diagnosis scan (mostly because there was no enema!) Not long after that was completed, the ER doctor and nurses came in to quiz me: "Had you eaten any sharp objects recently? No? You have not eaten a pin or part of a knife? Are you sure? No? Okay then... The on-call surgeon will be in soon to talk."

It was at that point that Kevin called my mom and told her she should probably come to San Diego. It was about 1 am at that point, so she booked a flight from ABQ to SAN for first thing in the morning, to land around 11 am.

The on-call surgeon, Dr. Shawn Bench, came in pretty soon after that. He explained that the CT results looked like my small intestine had ruptured! He noted that I was in good spirits, because I smiled at him when he walked in the door, so he didn't think I needed to have surgery right away that night, that we could schedule for the morning. I guess my good manners got me an extra 12 hours with my full small intestine. Someone started me on IV antibiotics and fluids, since I was extremely dehydrated from not being able to eat/drink anything for 48 hours.

Dr. Bench

After that the fun started. A nurse came in to insert an NG tube. Now if you've never experienced this, think of someone trying to stick a pen up your nose and down your throat. Of course, because I am special, both of my nostrils are always extremely swollen (Can we attribute that to Crohn's? Probably), but the nurse somehow managed to get the tube in correctly, after several tries with both sides. No one explained to me what the tube was for, all I knew is that it was up my nose, which was uncomfortable, and down my throat, resting on my tonsils, which were also pretty swollen at the time.

Finally, at who knows what time, I was taken upstairs to a room on the 4th floor - south. SMH's south-facing floors have a nice view of the city, and the higher-up floors almost have a view of the ocean, so that was pretty nice. However, nobody did anything with that darn NG tube. I still didn't understand why it was up my nose, but I was too tired and in a lot of pain still, even after having received a couple doses of morphine. So I tried to sleep. A couple hours later, I woke up feeling extremely nauseous, and very gag-y from the tube down my throat. I called the nurse and tried to explain without throwing up that I was going to throw up. Someone finally came into my room to help me get to the bathroom for that...

I finally got a couple more hours of fitful sleep, until the shift change at 7 am. The new doctor came in and started barking orders, such as "Somebody hook up her NG tube! Why was this not hooked up last night?!" Apparently that darn tube up the nose/down the throat was supposed to be sucking ickies out of my stomach and out through the tube. Good to know. That probably would have prevented the middle-of-the-night throwing up.

The surgeon from the night before came in to talk about when he was going to do my surgery. I asked him if he would consider waiting until my mom arrived. I also asked him to call my GI doctor in Thousand Oaks to make sure he understood my case as much as possible before cutting me open. He explained the surgery to me - it would be an exploratory surgery to see what was going on, possibly remove some inflamed and/or ruptured intestine, and that I may end up with a temporary ostomy bag. That was a line that I had seared into my brain - I had to repeat it every time anyone wanted to talk about the surgery - in my room, in pre-op, in the surgery room before being knocked out - over and over again.

Finally, I had the surgery, and the only two things I remember about the hours afterward were asking if I had "a bag" right away, and then during the night afterward, being told my fever was running to high and I needed to make it go down. They gave me ice and cool compresses, which helped temporarily, but I was still too feverish for comfort, so I was transferred to the SICU (surgical intensive care unit) on the 2nd floor.

I spent something like four days in the SICU. I don't remember much of the first day, except that I had a really nice nurse who also had Crohn's. She even recommended a San Diego-based GI doctor, who turned out to be excellent, Dr. Alissa Speziale with Sharp Rees-Stealy. Finally on the 2nd or 3rd day, I was allowed to have visitors (aside from Kevin, my mom, and Kevin's mom). A bunch of my grad school friends (Maura, Charlotte, Ashley, Marla, Jeff, and later Jess and Zach... possibly others, my morphine-addled brain at the time isn't letting me remember) came by with a card signed by classmates, stuffed animals, and flowers (which I only got to see a picture of because they don't allow flowers in ICU rooms). I got other gifts from friends and family - a stuffed penguin from Aunt Mary, flowers all the way from Thailand from Ja, and lots of other love and support. Kevin's mom came down to visit, and our moms spent a night in a hotel instead of in the hospital.

The worst part about my stay in the SICU was not long after they took my catheter out, I had a... terrible... nurse. I wasn't yet able to get out of bed, so anytime I had to pee, I had to call for the nurse and use a bed pan, not something I recommend, especially when your stomach was recently ripped in half. Instead of waiting for the lift team to help get me on the bed pan, she had me roll myself over and back, and then left me on the bed pan for 10 minutes to go tend to another patient. Not Cool. Needless to say, she was not my favorite.

"Smiling" with penguin in the ICU

I was finally moved to a regular room on the first floor, which turned out to be the cancer unit. That is where things were finally looking up. My nurse assistant's name was Kelly, and she was a bundle of joy - a great attitude to have when working on the first floor. I was able to walk to get my legs and muscles working again by walking around the unit, either with my mom, Kevin, or nurse assistant Kelly, I was able to start drinking water, and then one morning, they took the NG tube out! My surgeon told me if I didn't throw up that day, that I could finally have some solid food. I hardly even had a stomach ache, let alone nausea, so I was allowed to eat! Since I wasn't hooked up to the NG tube, I was even allowed to shower. After the shower, my fever finally broke completely for the first time in almost a week.

A couple of days later, the doctors agreed that I could go home. I was glad to hear that, but I was also scared. Was I ready to go home? Could I handle it? What if everything fell apart and I had to go back? I was lucky to have such a strong support system. Kevin was ready and waiting for me to come home, and my dad even flew out for a week after I was discharged. My parents acted as my chauffeurs while Kevin worked (I was still on strong painkillers and was not allowed to drive). They took me to appointments, and made sure we were well-fed, even though I didn't have much of an appetite for about a month after the surgery. After my parents left, I still had a strong support system. At school, I was allowed to take incomplete for all of my courses for the quarter, and had agreements with each professor for the work I had to complete in order to pass. There was one doctor's appointment I had to go to while still on painkillers, and my friend Charlotte drove me.

A lot of people describe friends and family pulling away during and after a major medical event like this. I feel lucky that I had the opposite happen. I feel like many of my relationships got stronger as a result. People show their true colors, and luckily, all of the colors I saw were good.

Now, I am doing everything I can to ensure I don't end up back in the hospital. While there are things out of my control, I do what I know I can. My parting message to my care team was "This was fun, let's never do it again!"

Do you want to help those who have been hospitalized because of this disease?
This year, I am once again taking part in Team Challenge. I will be doing a Race in Orange cycling event on April 7 with Tina, then participating in the Lake Tahoe Triathlon at the end of August for my 10 year anniversary of being diagnosed. You can support my fundraising efforts for these two events here.


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Stay tuned for Part 2b: Hospitalization 2011

Life with Crohn's | Part 1: Diagnosis

"It looks like you have Crohn's Disease"

It was August 11, 2008. I was doubled over in pain which had been getting progressively worse for 3 days, and went to the doctor assuming a case of Appendicitis. Several hours later, here's what we knew:

"Transmural wall thickening and luminal narrowing involving the distal/terminal ileum, with associated mild surrounding stranding, ill-defined wispy fludi and regional pericecal adenopathy. The findings are most suggestive of an infectious or inflammatory ileitis, to be correlated clinically for IBD/Crohn's."

WHAT?

The CT of my abdomen and pelvis with contrast was fairly traumatic. To start, when we went to the hospital registration desk to "schedule" the CT, they tried to schedule it for a week in the future, instead of right away (or STAT in doctor speak). After several minutes of calls to my doctor's office, I was scheduled for an appointment ASAP. I had to wait for about an hour in the waiting area, as there were some cases that came through the ER - a car accident, if I remember correctly. Finally it was my turn.

The technician administered the barium for the contrast via enema, something I would never wish on anyone, even my worst enemy. I won't go into the details, but it was unpleasant, and extremely painful due to the unknown swelling in my small intestine. After the imaging was complete, I ran to the closest toilet, about 100 yards down the hallway. Again, I would never wish this on my worst enemy. Luckily for me, I wasn't alone: both of my parents were at the hospital with me, and my friend Tina even stopped by while we waited for those CT results, since it was now approaching 6 pm.

The CT, along with blood work indicating extreme swelling/pain and possible internal bleeding, were strong indicators for inflammatory bowel disease, most likely Crohn's; all that needed to happen to finalize the diagnosis was a colonoscopy. The most shocking blood result was my C-reactive protein (CRP). A test result showing a CRP level greater than 10 mg/L is a sign of serious infection, trauma, or chronic disease; mine was 30.4!

Colonoscopy: Age 20

On August 21, I went in for my first (of 5 so far) colonoscopies. "There is evidence of superficial mucosal ulceration with inflamed granulation tissue." What it boiled down to is inflammation in the area of the small intestine commonly associated with Crohn's, and there was evidence of ulceration, also commonly associated with Crohn's. Voila. Less than 2 weeks after I started feeling terrible, I had a diagnosis: Crohn's Disease.

At the time, I didn't realize how lucky I was. I have since heard stories of it taking months or years before a final diagnosis of Crohn's or Ulcerative Colitis. Granted, for years, I had been complaining about stomach pain, but it had never been severe enough to look into more than taking some antacids.

Knowing what I know now, I'm thankful that I had a Crohn's flare then. I was able to start medication right away that helps to keep the disease from deteriorating my digestive system even more than it would without meds - and it was good to have that diagnosis for my future hospitalizations...

Do you want to help those who are newly diagnosed, like I was 10 years ago?

This year, I am once again taking part in Team Challenge. I will be doing a Race in Orange cycling event on April 7 with Tina (the same Tina who was there for my diagnosis), then participating in the Lake Tahoe Triathlon at the end of August for my 10 year anniversary of being diagnosed. You can support my fundraising efforts for these two events here.


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Stay tuned for Part 2: Hospitalization 2013

Life with Crohn's | Introduction

It has been 5 years since I was last hospitalized, 7 years since my first hospitalization, and nearly 10 years since my diagnosis. 

I started this blog before I was diagnosed to document my DC internship, then my adventures in Salzburg - but everything changed in August 2008 when I first heard the words "Crohn's Disease."

Over the next few months, I'll be writing a series of blog posts about my journey over the past 10 years with this disease:

• Diagnosis
• Hospitalizations: 2013 and 2011
• Medications
• Doctors
• Procedures & Tests
• Coming to terms
• Living life & managing flares
• Advocacy

Since 2016, I have also been participating in the Crohn's & Colitis Foundations' Team Challenge program, an endurance training and fundraising programs to support the Foundation's efforts to find a cure and support those living with Crohn's Disease and Ulcerative Colitis. You can support this year's triathlon efforts here