Mary's Going with Guts!

Track my progress as I train for my next Team Challenge half marathon for the CCFA

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My Semicolon Story: It’s not what you think!

Posted by msdon9 on July 15, 2015

My purple semicolon tattoo done at SoulSkin Studios in Reno, Nevada.

My purple semicolon tattoo done at SoulSkin Studios in Reno, Nevada.

Grammatically speaking, a semicolon is a punctuation mark meant to separate two independent clauses in a sentence. Theoretically you could just end a sentence with a period, but the use of a semicolon indicates that you’ve decided to continue it into your next thought.

Here are three examples of compound sentences. The last two use semicolons.

  • I liked English class, but my grammar sucks.
  • I liked English class; my grammar sucks.
  • I liked English class; however, my grammar sucks.

Semicolons are typically unpopular. Most people don’t know how to use them well. In giving advice to student writers, Kurt Vonnegut said, “Do not use semicolons. They are transvestite hermaphrodites representing absolutely nothing. All they do is show you’ve been to college.”

But semicolons are actually making news these days, and not because anyone cares about English class. I’ll explain later…

But first, my backstory:

Two summers ago, I spent two weeks in Reno participating in a unique professional development experience: The Reynolds High School Journalism Institute. While there, one of my talented colleagues decided to report on tattoo culture. He tasked himself with finding the most talented tattoo parlor in Reno. When he found it, he decided to go get inked to include the experience in his article. Coincidentally, I was itching to get another tattoo myself, so I joined him. I asked the artist to draw a tiny purple semicolon on my wrist.

“What’s this about” the artist asked, quizzically.  I explained that I was diagnosed with Crohn’s Disease at 11 years old. After years of battling intense symptoms of fatigue, seemingly endless stomach aches, food sensitivities, and nasty side effects from drugs that were (ironically) designed to combat my symptoms… my gastroenterologist felt it best for me to have a surgery called a subtotal colectomy. A father-son team of surgeons from Mount Sinai Hospital in New York City eventually removed 19 inches of “dead” colon from my body. This left me with…you guessed it…a semi-colon. Miraculously, this occurred mostly laparoscopically, and the only physical indication that I actually HAD the surgery is a wiggly 4 inch scar that bisects my belly button.

Early December, 2012. Two days post-surgery.

The recovery was a slow, painful process. I had to take about a month of medical leave from work and slowly reintroduce solid foods into my system. It took me weeks to walk like a normal person, sleep like a normal person. But, on the whole, the surgery was a major success! I have a much better quality of life now. I am not exhausted all the time. I am not plagued with abdominal pain that keeps me homebound. I can lead a normal, active life without having to worry about where I can use a public restroom without embarrassing myself. I can eat a meal at a restaurant and not worry about getting sick. Between the surgery and a drug called Remicade, I feel like a normal person again.

So when I glance down at the tiny purple semicolon on my wrist, I’m reminded of the struggle that got me here. It’s symbolic to me for that reason.

Flash forward a year or so later… I’m conducting a writing conference with a twelfth grader in an alternative school program. He walked me through a troubling narrative where he detailed his personal battles with depression, addiction and suicidal tendencies. He saw the tiny purple semicolon on my wrist and asked me about it. I told him my story, and he was surprised.

It was originally from him that I learned about The Semicolon Project. Honestly, I think it’s a great thing… people have various reasons for wanting to get tattoos, and the best ones are personally symbolic; they are not random doodles that $50 here or there can buy to dot the sketchbook that is our skin.

Nothing bugs me more than someone who has a bunch of random tiny tattoos all over the place.

Actually, that’s hyperbole. That’s your second English lesson today. 

Its meaning is different for me, though. And now that more and more awareness about The Semicolon Project has brought its backstory out of the darkness, I’m fielding more and more inquiries from friends and loved ones. I feel the need to explain myself. I don’t know why… I just do.

So if you see a person with a semicolon tattooed on his or her body, it does not necessarily mean that they are battling depression. It does not necessarily mean that they contemplated suicide. And this is not something I came up with all on my own. Need proof? Check this out. And this (hi, Julie!!) To me, life is way too wonderful to contemplate an early exit. Perhaps I’m lucky to feel this way, and I’m mindful and sensitive to those who struggle. To borrow a line from Mary Shelley’s classic novel Frankenstein, “Life, although it may only be an accumulation of anguish, is dear to me, and I will defend it.” If tattooing a tiny semicolon on one’s body is a reminder to keep hanging on, then…hey! God Bless!

And to my friends who have reached out to see what’s going on with me. Thank you. You are the embodiment of what true friendship is all about.

IMG_0757

I snapped this sweaty selfie after running my first 10k post-surgery.

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Remicade.

Posted by msdon9 on May 16, 2012

I’ve been quiet for the past few weeks… really quiet.

It’s for a few reasons. First, up until recently, I wasn’t  feeling well at all. That’s the short and simple answer.

Secondly, work has had me so busy that I really haven’t had the time to sit and get some writing done. To be quite frank, I don’t have the time now either (it’s after11pm, which is way past my bedtime for a Wednesday). But I was just thinking about my day tomorrow and I feel that I need to come on here and talk about how things have been going in the past two weeks. Allow me to disclaim in my English teacher manner that I am not going to stress out about grammatical failures in this post. It’s too late and I’m way too tired to even bother.

Remicade. I started two weeks ago, and I’m scheduled for my second infusion tomorrow after work. I have to say that I’m really looking forward to it. Ok, I’ll be honest – it’s really NOT fun to be poked and prodded before being hooked up to an IV that will shoot all sorts of stuff into my bloodstream. I have little veins, and I black-and-blue quite easily! But – the pain and the discomfort has been so worth it because just 48 hours after my first infusion I noticed a difference in almost EVERYTHING!

[In the space that occupies THIS paragraph, I wrote (and deleted) another long-ish paragraph where I lamented about how crappy my training runs have been these past two seasons. As I went back to re-read, I was annoyed by my tone. I don’t want this to be a pity party, and it never SHOULD be, because no matter how crappy I’m feeling or now many times I need to race to the bathroom, there are 100 others who could only wish they had it as easy as me. Let it simply be known that I’m really pleased with how much *more* I have been able to accomplish in these past two weeks due to my body’s reaction to the first infusion. Be it legitimately physical, purely mental, or a combination of the two, I’m so happy to feel like “I’m back” that I’ll take it with no questions asked. I’m simply hoping that I continue to respond well to the drug and that what’s happening in my transverse colon is as positive as what’s happening to my energy and attitude.]

Other changes: I’ve given up coffee like some people give up smoking; I no longer drink it every day, but I don’t consider it a crime if used sparingly on weekends. I’ve switched to Yogi vanilla spice tea  to get me through my weekday mornings. It’s not as caffeinated, but it wakes me a little and doesn’t acid-wash the lining of my stomach. Sometimes on the weekends I’ll have a cup of black coffee, but only when I’m sure that it won’t hurt me. I also started eating yogurt again! On two separate occasions I had a 6oz cup of Chobani nonfat Greek yogurt, and I didn’t regret it. For a long time, yogurt has been a no-no.

Two pints of beer last Saturday night didn’t really agree with me. I guess all in good time…

I went on a nice long run this past Sunday in hot weather that made me feel like death, but it was still an awesome run because I didn’t need to keep it close to home in fear of straying too far from a bathroom. It was humid, though, and I felt kind of sluggish. I bet the pollen didn’t help, nor did the two beers the night before, plus shouting at a careless biker who nearly mowed me over because she was on the sidewalk took some wind out of my lungs. I downed a Gu at mile 2.5 (shameful) and emptied both bottles of my hydration belt before making it home, but it was the best run I’d had in months. I think I would have pushed myself to go even further if I didn’t have anything to do for the rest of the day.

I lost a lot because of Crohn’s. I guess now’s my time to start taking it back.

My first Remicade

Trying to smile through my first infusion.

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Chronie Blogs… (I would have said it myself, but someone said it better already) Part 2

Posted by msdon9 on April 6, 2012

A Crohn’s blogger from New Jersey who also follows Julie (@semicolongirl) recently wrote a blog post entitled Crohn’s and Dating. He graciously gave me permission to share his thoughts here, but you can read his full blog at The Crohn’s Beater.

Being married, it’s been a while since I’ve dated, however, a “tweet” I read over the weekend from one of my fellow “Crohnies” made me think back about what it was like to date and have Crohn’s.  This fellow Crohnie is in the hospital with a major flare up and has a first date scheduled that she obviously could not make.  She was looking for some advice on how to handle the situation.

Dating is difficult enough for healthy people, let alone those of us with chronic health conditions that are difficult to discuss. Crohn’s is a disease of young people — most people tend to be diagnosed between the ages of 15 and 35. This means that there are a significant number of young, single people with Crohn’s who have to deal with this issue.

I’ve been lucky in that my Crohn’s is basically asymptomatic. While I am anemic and often fatigued, my stomach pain is rare as long as I avoid the dietary triggers that send me for a loop. I do have to say, however, that once upon a time I ate a small slice of ice cream cake at my boyfriend’s grandparents’ house because they bought it for my birthday not knowing that I couldn’t have dairy. I was NOT a happy camper for the next 24 hours, but I felt badly turning it down and I really didn’t want to have to explain WHY I can’t have ice cream cake. So, should I live a life of feeling guilty when people try to offer me food that I can’t have? In order to do that, I’d have to release the details of my diet and how I have to live, and quite frankly, it’s too much of a pain in the behind to indulge people in such conversation. Speaking of which…

For the Twitter person’s case, in my opinion, Crohn’s is not a first date conversation.

I recently had a “first date” with a doctor. Unfortunately I couldn’t escape the Crohn’s conversation because, through basic “getting-to-know-you” conversation, he learned about my involvement with Team Challenge and why the charity is so important to me. Given that I was having dinner with someone with a medical background (and perhaps a lack of tact), the conversation, steered by him, turned toward the health of my intestines. I’ll spare you the gory details of most of THAT awkward conversation, but needless to say I don’t want to talk about inflammation and colonics over sushi. Poor guy – I won’t be seeing him again.

…It takes a while for two people to really know each other in a dating relationship.  When you are both comfortable enough to be yourselves, that’s really when you can get a feel for what this other person is really about.  You can learn a lot by seeing how the person you are dating reacts to other people with medical conditions. Without ever bringing up your condition, your date may give you clues about how he or she is receptive to being in a relationship with a person who has a medical condition.  If you decide that you’re having fun being with this person for now, but you don’t think it will go anywhere, bringing up your disease is not really important. If you’re well enough during the relationship, you may not feel the need to discuss your Crohn’s.

I have no problem with this, as long as I am fully comfortable about a person. This takes a little while, as the walls that I have up in new relationships are only partially because of my chronic health issues. Any person who I had a relationship with, a serious one, knew full well about how Crohn’s affects my life, and it was rarely a problem. I think one boyfriend might have broken up with me because he mistook flare-related pain and fatigue for a general lack of interest, but there was hardly any heartbreak with THAT one, haha.

On the other hand, if you do feel like you would like to take the relationship to the next level, in my opinion, it is important to discuss your Crohn’s as soon as possible.  It’s a sad fact of life…not everyone can cope with the demands of being the partner of someone with a chronic illness. It may be better to find out earlier in the relationship rather than later, when you are more at risk of being hurt and have invested a significant amount of time and energy.

Crohn’s is difficult and dating is difficult.  Combining the two is certainly not easy, but you can make it a positive.  If you find someone that 100% supports you emotionally when you are going through a bad flare up, you know that you have found someone that will stick with you through anything.

I wholeheartedly agree here. A chronic illness, especially one that is sometimes rampant in families, needs to be discussed in the interest of “full disclosure.” Also – one should know why I need my own bathroom!!

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Chronie Blogs… (I would have said it myself, but someone said it better already) Part 1

Posted by msdon9 on April 5, 2012

In using Twitter these past few years, I’ve become a part of a variety of “networks” related to my career and interests. Within the past few months alone (partially thanks to the social media prowess of my friend @leadingwithguts), I’ve connected with people who suffer from Crohn’s and Colitis all over the nation, many of whom maintain their own blogs. Now, this meager blog started as a way for me to keep my friends and family, especially those who donated money in my first half marathon attempt, in the loop about my training and progress. Well, the Boston 13.1 in 2010 came and went, yet the blog is still here… and I believe that some people out there are still reading it. I appreciate that greatly, and for anyone who is genuinely interested in patient and TC training blogs, may I point out a few more:

First – The Sick Adventures of a Semi Colon Girl. Julie (@semicolongirl) is a Team Challenge teammate from Florida whose own experience with Crohn’s makes mine look like a walk in the park. She recently penned a post detailing a surprise hospital visit. Now…some people have the gift of expression, and some don’t. Julie most certainly does, and there’s a particular analogy in her post that really resonated with me.

When my doctor was pressing on my stomach and it hurt he became alarmed.

I’ve mentioned before that parents and doctors are a good reference point of when to panic or be alarm, just like flight attendants on planes. During turbulance I always pay attention to the flight attendents, if they barely notice anything then I don’t worry. If you can see panic in their faces it’s time to locate your nearest emergency exit.

My doctor immediately stopped the examination, we were even chit chatting about my trip to Israel and laughing. He told me he was sending me to the ER for an immediate CT scan. Oh crap, that can’t be good.

When my doctor said that “I owed it to myself” to seek a 2nd, and maybe 3rd opinion…it made me a little nervous. I’m also nervous about the upcoming appointment I have at Mt. Sinai on Monday. I have a pretty sizable stricture myself, one that concerned my last doctor, but will the new guy freak out when he sees it and send me to the hospital to have it dilated? This is not how I want to spend my spring break…

Julie tweeted throughout her hospital stay and kept her followers in the loop regarding her prognosis and treatment. In one of her tweets, she commented on how she was missing a first date with someone because of her hospital stay. That idea opens up a whole OTHER area of discussion that I’ll bring up in my next post.

Dating and Crohn’s – to follow. If you have IBD and you’re in a relationship or married, get ready to laugh. If you’re single, get ready to relate!

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Looking on the bright side, at least I don’t have to go on Prednisone…

Posted by msdon9 on March 26, 2012

I had my follow up appointment with Dr. Adhami today to discuss the results of my colonoscopy and the pathology report on my biopsies. I was under the impression that I’d leave today with some answers…. either “we’re going to try this, ” or “we’re going to put you on THIS medication to see where it goes…” but it was a lot more ambiguous. My doctor, who is among a team of specialists who diagnose and treat digestive diseases here on the south shore of Long Island, referred me to another specialist in the city. I ended up making an appointment in early April with Dr. Peter Legnani, a research gastroenterologist and clinical instructor at the Mount Sinai School of Medicine  who specialists in complex cases of Crohn’s Disease.

The Mount Sinai Hospital in Manhattan is to Crohn’s and Colitis what Sloan Kettering is to Cancer. Physicians and scientists on the faculty of Mount Sinai School of Medicine often interact with pharmaceutical, device and biotechnology companies to improve patient care, develop new therapies, and achieve scientific breakthroughs in the diagnosis, treatment, and (hopefully eventual) cure for digestive diseases. The problem with Crohn’s is complex… it’s a disease that puzzles doctors in terms of what causes it and how to control it. At this time, there is no cure. Many of the medicines that are on the market now that control the symptoms of IBD may have long-term side effects that we’re still not aware of. Because I’m young, and because I’d like to be able to have children someday, Dr. Adhami feels more comfortable sending me to a more well-known doctor in the field. I guess this is good news, but I’ll be honest and say that it scares me a little bit at the same time.

Have you ever thoroughly read the paperwork that comes with your prescriptions? There’s always a line in there somewhere that says something to the effect of, “remember, your physician prescribed this medication because he feels the benefits to you are greater than any side effects that may occur.” Many of the “industry standard” medications used to treat moderate to severe Crohn’s Disease are TNF Blockers. What does that mean? Basically my immune system will be drastically suppressed, increasing my chances of contracting serious, if not deadly diseases. This isn’t exactly new to me… as a teenager I was on a drug called 6-MP ( 6-mercaptopurine) that had the same side effect. If I go the route of Remicade or Humeria, it will increase my chances of getting lymphoma or other cancers. So why even bother taking it? Well, Dr. Adhami stressed to me that NOT taking any medication to control the inflammation can ALSO lead to a more severe blockage or cancer. Additionally, having the inflamed section of my intestines removed surgically does not guarantee that the disease will not spread to other areas of my digestive tract.

So many of us with IBD who are being treated with these medications are backed against the wall here. While they usually help us feel better, the scary side effects are less than pleasant. Still, when I asked many of my “Chronie” friends for their advice and experiences with Remicade and Humeria, I’ve heard a lot of good feedback. Here’s hoping…

So that’s where I am in this adventure. A lot of people have been checking in to see how I’m feeling, which I appreciate tremendously. Even if I don’t feel like talking about it (surprised?), It’s nice to know that people care to ask. I’ll be honest and say that I really do feel OK. When I was a teenager I was barely able to eat without doubling over in pain a half and hour later. Now I know to avoid the foods that trigger my worst symptoms and cope, for lack of better words. I’m still active… I’ve been following a training schedule for my next half marathon with Team Challenge and working out with my trainer every week. I only miss days of work for procedures and doctor visits, and now it looks like I can probably schedule my doctor visits and infusions around my work schedule so I can still fight the good fight against teenage apathy in English and Language Arts.

And boy am I glad that they don’t need me to take Prednisone! All anyone in this world needs is a bloated, hungry, mood-swingy, pimply ME!!!!

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Healthy Gut + Strong Core

Posted by msdon9 on March 25, 2012

Beth demonstrating leg pushes... just like we did them in cheerleading practice back in the day!

Our team workout was at the Holtsville Ecology Center yesterday. In addition to running several laps around the 1.2 mile loop, our unofficial Team Challenge LI personal trainer, Beth, was on hand to lead us through a grueling core workout.

I haven’t been feeling my absolute best since my colonoscopy last week. I suppose I failed to consider the impact of what a ton of biopsies in an inflamed area would make on the rest of my week… Though I’m not a fan of walking during training “runs,” I let myself walk the first two laps. I wanted to run at least one lap to see if I could handle it. Our awesome running coach, Dave McGovern, came along with me and encouraged a slightly faster pace. I’m really happy to report that the one lap I did with Dave was my fastest mile in months! So I know I have the fight in me… I just need to focus on getting better so I can have more than one mile at that great pace!

I’m heading back to the doctor tomorrow to further discuss the results of last week’s procedure and plan for my treatment. I’m hoping that whatever medication regimen I’m put on will reduce the inflammation in my system so that I can avoid surgery. Please keep your fingers crossed for me! I’ve been surgery-free since my diagnosis in 1991 and I’d like to stay that way!

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It’s Colonoscopy Day!

Posted by msdon9 on March 19, 2012

Hey, if you’re one of the small parts of the population that doesn’t know what a colonoscopy is, read more about it here. For healthy people, it’s typically a procedure done for a cancer screening. For those of us with digestive diseases, it’s kind of like an annual or bi-annual “benchmark” to see how things are going.

Unfortunately I’m overdue for this one today. The last one I had was in 2009 and it was only an “attempt” rather than a completion because I had such a tight stricture that the doctor couldn’t proceed with his scope without fear of puncturing me, which would have led to a whole host of other troubles… The CAT scan I had a few weeks back tells us that the stricture is still there, and it’s pretty tight. One of the doctors on my Gastro team prepared me for the possibility that it may also be a no-go for today, but we’re hoping for the best!

The prep I did for today was the easiest one I’ve ever had to do… I’m just hoping that it worked as well as it is supposed to!

Hopefully I’ll be able to update this later with some “good-ish” news!!

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Testing Week 1 – done!

Posted by msdon9 on March 6, 2012

For those of you who have been following my laments on Facebook, you know that I had an attack last week that put me in the doctor’s office.  After a brief consultation with my favorite PA in the practice,  I was promptly set up for a fresh battery of tests to see, for lack of better words, “what’s going on.” I suspected either a typical stomach bug or a reaction to new medication I had been taking, but a “hunch” is not enough to work with as a Crohn’s patient.  Anytime someone with IBD has gastrointestinal attack of some sort, there’s always the possibility that it’s a flare. A full round of bloodwork was taken on Wednesday, I was in the lab for another test on Saturday (I’ll spare you the gruesome details of that one; it’s TMI), and I went for a CT scan yesterday. Today, the results came in.

So here’s the business… Sorry to the non-IBD people for some of the medical jargon; I’ll try to explain everything to the best of my ability, and the hyperlinks will take you to places on the Web for more information.

My bloodwork shows a bunch of stuff, but the “remarkable” things are anemia, low B-12,  high-ish cholesterol, an elevated SED rate,  and a high cardiac enzyme. It’s typical for Crohn’s patients to have low Hemoglobin (10.7) and a Vitamin B-12 deficiency. Part of the problem is that we don’t absorb nutrients from food like normal people do because there is a level of inflammation somewhere in our systems that prevent absorption. Sometimes oral supplements (like multi-vitamins and iron supplements) help  little bit because of concentrated high dosages, but sometimes inflammation gives us trouble absorbing the vitamins and nutrients from pills as well. In that past, I’ve actually had to receive iron injections. This was tricky because the injections are not only VERY painful, but they stain the skin as well. That being said, the only place to receive an iron injection is in the buttocks. As a college student, I had a great time pulling down my pants and showing everyone my “black and blues.” It’s a possibility that I may have to go to back these injections if I can’t get the nutrients I need orally.

A high cardiac enzyme  (CPK level) typically indicates damage of some sort to the heart. With a little Internet research, I found out that doctors sometimes look at these levels to see if a patient has had a heart attack. Working under the assumption that my heart is basically healthy, I looked to see if there were any other causes for an elevated CPK level:

Because some of these enzymes and proteins are also found in other body tissues, their levels in the blood may rise when those other tissues are damaged. (via WEB MD)

It’s entirely possible that the level was high on the day my blood was taken simply because I was running a fever. It could also have something to do with the current level of inflammation in my gut. This is one of those results that leaves yet another question mark rather than an answer. To be safe, my doctor sent me for an echocardiogram to make sure that my heart is healthy. I’m still waiting on those results…

Oh yeah, I have high cholesterol too. But who doesn’t these days?

The “other” laboratory test I mentioned showed nothing scary… basically I don’t have any kind of bacterial infection, Salmonella or e Coli. I’m waiting to see if I have a parasite of some sort, but the doctor thinks it’s unlikely. Given the amount of sushi I eat on a regular basis, I’m not yet ready to rule that out as a possibility.

The CT Scan was probably the toughest of all of these tests so far. I had an abdominal and pelvic scan with IV and oral contrast. What does this mean? Well, I had to fast for four hours before the test and drink two large bottles of Barium Suspension liquid (flavored like “berries,” but still significantly gross). When I was seen by the radiologist, I was hooked up to an IV and sent into the scanner. The IV sent a shot of dye into my system that made me flushed and nauseous. Luckily I managed NOT to puke all over the nice technician technologist (thanks for the correction, Anita), and we were able to complete the scan without incident. I felt like crap for the rest of the night, though. Walking around with a belly full of barium was kind of like carrying a bowling ball in my bowels. I chased it down with a chicken parm sub from my favorite pizza place in the hopes of feeling better. No such luck – it took the overnight to feel somewhat normal again.

The scan shows a bunch of things that indicate I have  lot of inflammation in my colon, specially a narrowing of the colon wall in some areas and something called a stricture. Basically what this means is that my colon is much narrower than that of a healthy person, which makes it harder for me to digest my food properly. Sometimes this can cause pain and discomfort, especially if I eat certain kinds of food, but mostly I’ve learned to live with it. I am a little concerned about something called a “pericolonic lymph node” which might have to be biopsied and/or removed. I was told that this is typical for Crohn’s patients and that I shouldn’t be too concerned. I was also told that, left untreated, high levels of inflammation in the colon could lead to colorectal cancer. I need to be more careful about monitoring this… and I’ll find out more after my Colonoscopy next week.

And about that Colonoscopy: The last one I had was in 2009, and it couldn’t be completed because the stricture I had (probably the same one indicated above) prevented the doctor from accessing my intestines with his scope. In fear of puncturing the wall of my colon and sending me into emergency surgery, the doctor stopped the procedure. For a variety of reasons, I no longer see that gastroenterologist, but I was sure to tell the new doctor that he had better plan on going in there with a small enough scope to complete the procedure. Let’s keep our fingers crossed that there are no complications this time.

Make no mistake, I am a very lucky Crohn’s patient. I’ve suffered from the disease since I was 11, but I have now and have basically always had a mild case. Plus – my health has basically IMPROVED since childhood. To put this in a little bit of perspective, a normal SED rate (measure of inflammation) in 0-20. Mine is currently 38, but my mother tells me that it has run as high as 100. All things considered, I’ll take it! So many of my friends that I have met through the CCFA and other means have much more serious cases of Crohn’s and Colitis that make this narrative here seem like a walk in the park. When I work to raise money for the CCFA, it’s not just about me – it’s about them, too. Imagine what it must be like NOT to have a colon at all? How would you enjoy an ileostomy? Not very much I’m sure… but it is a reality for many people. If we DO manage to find a cure for these diseases, the pain and humiliation associated with such a procedure can be a thing of the past. This is my hope.

And even during all of this necessary nonsense, my spirits are high. I went to my team training at Eisenhower Park last week and logged some miles despite the cold, rainy weather. The picture with this post (snapped by our awesome coach, Dave McGovern) is proof that I’m not going to take this lying down.

Running with my Team Challenge Long Island pals at Eisenhower Park, 3/4/12.

I really need to take a moment to thank my friends and family for all of their support this past week. The kind words at work, the texts, the Facebook posts and Tweets, and most of all the donations have meant a lot to me. There’s still plenty of time to donate because I have a long way to go to reach my goal. Click here for more information.

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Lately…

Posted by msdon9 on March 1, 2012

I was in the last few minutes of my 6th period English class the other day trying to finish a pre-reading lesson on William Shakespeare’s Romeo & Juliet when I had one of those feelings like, “I’m going to puke!” Having dealt with chronic nausea since I was about 11 years old, I managed to take some deep breaths and muster out a weak, “Hey guys, I’m not feeling so well, so we’re just going to stop here for today, ok?” I made my way to the door to get some fresh air, and luckily I saw a colleague walking by at JUST the RIGHT moment! “Hey Evan,” I croaked, “Can you come watch my class for a few minutes?” He must have been able to read what was wrong all over my face, because without question or delay he popped into my classroom and said, “Go.”

I cautiously made my way through the hallway towards the faculty bathroom, almost tip-toeing, as if I was afraid that walking with purpose would trigger a gag reflex. In my mind, I recalled a scene from my own 9th grade year when I barfed all over some guy in the Freshman hallway at St. Anthony’s (sorry, Steve…) I thought about how glad I was to at least be in an empty hallway, where if I HAD to get sick, nobody would see. Even if I couldn’t make it all the way to the bathroom, at least I spared my own 9th grade class the trauma of seeing their teacher toss her cookies in the classroom garbage pail.

Of course when I got to the bathroom and knocked on the door, someone said, “I’m in here.”

Great.

This is what it feels like to have a digestive disorder with a semi-urgent situation… Granted, I’m NOT like this all the time – it’s just when the disease is active. Sometimes it’s hard for me to tell if I have a “stomach flu” or if it’s something else. The good news is that I ended up NOT going Linda Blair on everyone at work (thank you, Jesus, for sparing me the humiliation and everyone else the disgust). I left work early, took a nap, woke up with a 101 fever, and called the doctor. To make a long story short, it’s time for another round of tests to see what, if anything, has changed from my LAST round of tests in 2009.

I’ll keep this blog updated for anyone who is interested in how things progress. I would like to personally thank friends from near and far who have donated to the cause on my behalf. It’s really appreciated, and I want you all to know that.

As always, thanks for reading!

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Leaving Las Vegas

Posted by msdon9 on February 20, 2012

The saying goes, “What happens in Vegas, stays in Vegas.” Well, there’s a reason why you didn’t hear much about my participation in this past December’s Rock and Roll Las Vegas 1/2 Marathon, and the location is only part of the reason.

Last season I ran with Team Challenge as an alumni “street team” member, which means that most of my fundraising was replaced with volunteer work for the Long Island chapter. While you may have seen me taking pictures at the NY State Parks Summer Run Series or posting information about my teammates’ fundraising events every now and again, I didn’t actively pursue a particular fundraising goal for myself. I paid for my own flight, hotel, and race entry fee, and spared most of my friends the abuse of social media I usually engage in when I’m actively trying to raise money for the cause.

My friend Bevin agreed to come to Vegas with me to run what would be her first half marathon. We trained separately, me in Long Island with my team and she down the Jersey Shore, but we both stepped off from Race Corral 17 right in front of the Mandalay Bay Hotel the evening of December 4th. That’s right, I said “evening.” The race started around 5pm and we ran the strip at night with 60,000 estimated participants. It. Was. Mayhem. (But it was also a lot of fun).

My performance in the race was just…..”eh.” I had a feeling going into it that my stomach wasn’t going to cooperate because it HADN’T been cooperating almost all season. I think maybe 1 out of every 6 runs was drama free, and the rest required frequent pit stops. What I hoped would end in a PR in Vegas ended up a much longer race with 3 or 4 bathroom stops along the way (I lost track), each of which came with super-long lines. Apparently it was difficult for the city of Las Vegas to gauge how many port-a-potties would be needed to accommodate 60,000 runners. Each line I waited on was about 10 minutes long.

Hasta Luego, PR.

Aside from that, I felt pretty good when I WAS able to run. I started slowly with a few of my friends who were feeling a little sick. I left them at Mile 5 for my first bathroom stop, but picked up the pace right after to try to make up for some lost time. I took a little walk break somewhere around mile 10 and watched the Bellagio fountains…then I really tried to pick up my pace for the finish. If I could subtract my time in line for the bathrooms, I probably would have had a decent performance. I guess you can’t win ’em all.

Probably the WORST part of the Vegas race was the aftermath… a large percentage of those 60,000 runners were trying to make their way through Mandalay Bay to get back to their hotel rooms, all while the Michael Jackson Cirque de Soliel show was letting out in it’s opening weekend. Lest we forget that there was also some crazy RODEO going on and there were a bunch of cowboys in 10 gallon hats trying to make their way through the hotel as well. We wanted food after the race, but we were basically SOL – most of the restaurants in Mandalay Bay were closed, and the buffet that was open had like a 2 hour wait.

Logistically, some things could have been improved… that’s for sure.

The important thing is that the race benefitted the Crohn’s & Colitis Foundation in a continued effort to find a cure for digestive disorders. I took a few minutes to search around the Internet to find some facts to post, and I stumbled upon a pre-race press release from the Team Challenge national organization:

Less than 1% of the population has ever run a half marathon – no small feat – particularly for those who suffer from Inflammatory Bowel Diseases (IBD). More than 1,200 Team Challenge participants, many of whom have Crohn’s Disease or ulcerative colitis, will be running the Vegas Rock ‘n’ Roll ½ marathon on Sunday, December 4th.

So that’s pretty cool, right? Think of how much money was raised as a result!

Truthfully, progress can’t be made to find a cure without medical research, and medical research can’t be conducted without the generosity of everyday people. There are many causes out there that need support; we all know someone who has either lost a loved-one to cancer or battled the disease themselves. We all know of children who suffer from debilitating and traumatic chronic illnesses like Spina Bifida and Muscular Dystrophy (to name a few). We all want to find a cure for ALS and Leukemia and Lymphoma. I understand that it’s not easy to find the extra dollars to send to these causes in a tough economy like this one. I can only hope (along with the estimated 1.4 million Crohn’s & Colitis patients in the US) that there’s a few dollars to be found for our hopeful cure, too.

 

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