Mary's Going with Guts!

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

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.


3 Responses to “Testing Week 1 – done!”

  1. Anita said

    Hey Mary,

    Good to hear about your progress and results thus far! I will just throw in my slight corrections…the barium that you drank is not radioactive-only if you have a nuclear medicine or Pet scan-then you’ll def be radioactive. The barium is a contrast that is dense enough for the CT scan to be able to highlight the areas of interest, that’s why water doesn’t work. And secondly, we are technologists not technicians-the difference is that we, as technologists attended school for our job, whereas a technician receives on the job training. And we are used to getting puked and pooped on too! It’s unfort apart of our job, but we do appreciate it if you didn’t! 🙂 …my donation is coming…need my new credit card first!

  2. Sarah T. said

    Hi Mary! Wow – thanks for being so open and honest about your trials and tribulations as a sufferer of Crohn’s … Stay strong, keep training, keep blogging and know that you have much love and support!!! Big G, Little o, Go, Mary, Go!! Love ya!

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