Keep Clam and Carry On

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This iconic World War II poster produced by the British government in 1939 has been adopted by everyone from Batman fans to shoes lovers.

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I think that it has resinated with so many because there is merit to the original poster; we need to be able to roll with what life throws at us. I consider myself to have a fairly easy going and positive personality, but there are times when it is appropriate to get rattled and express negative emotions.

When I was diagnosed with UC I was not exactly calm. In fact, I was an emotional wreck! My Gastroenterologist addressed my physical symptoms, but did nothing for the emotional aspect of the disease. As my mom puts it- I was struck down in the prime of my life. I went from life as a collegiate athlete to life as a couch potato, and not by choice. I loved running (I know that not many people do, but it was a major aspect of my life throughout high school and I had goals for the future). I lost 30 pounds and all my energy. Running was out of the question. To top it off the steroids I was taking to control the inflammation in my colon violated NCAA rules, so even as I started to feel better I knew that my college running career was over. This loss caused me to go through a grieving period. I shed a lot of tears and was angry. Still my doctors never really addressed it.

I want others to know that it is okay to feel sad and angry. There is such an emphasis on the physical symptoms and the mental/emotional aspects are ignored. I turned to music and art to lift my spirits. I also talked to a counselor. While it is appropriate to be upset and angry, I did not want it to consume my life. I found that I needed to let my negative emotions out so that I can move on. I cry for a few minutes and then I do what I can to make things better. Allow yourself to grieve, but talk to someone (counselor, mental health professional, best friend, parent, sibling, you get the idea).

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Public Radio Saved My Life

I have been listening to NPR my entire life. At First, it was forced on me by my mother. It was the default station on her alarm clock, in the car, and she was always listening on the kitchen radio throughout the day. I rebelled in middle and high school, always complaining that I couldn’t listen to pop music on the radio like my friends did. Then, I found myself tuning in on my own. While in college, I relied on NPR for my daily news and now it is programmed into my car radio.  I realize that the claim that public radio saved my life may seem like an exaggeration, but it’s true.

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On November 2, 2012, while driving home from student teaching, I was listening to my local public radio station (89.1-WBOI). Talk of the Nation’s Science Friday was on and Ira Flatow was speaking with Dr. Russell Cohen from the University of Chicago about a study he was conducting on the relationship of good bacteria and IBD (you can listen here). I had a “drive way moment” as I sat in my car and listened to the end of the interview. I ran inside and told Kyle about what I had just heard. He instantly logged onto NPR.org and listened to the interview. We were both very impressed with Dr. Cohen and decided to see if I could get an appointment with him. The rest to the story is familiar to most of you… Dr. Cohen reviewed my case and referred me to Dr. Hurst. My colon was removed and almost a year to the date (November 1, 2013) later, I started life with my J-pouch.

If you are a regular NPR listener, you know that the Spring Fund Drive is winding down. I have never been a contributor. I have listened to Fund Drive after Fund Drive over the last few years always justifying my not calling in–first, because my mom always does, and then because I was sick and not working. When this Spring Fund Drive began I knew that I was out of excuses. Kyle and I are both working and I owe so much of how well I am feeling to that Friday in November 2012. I was going to lose my colon regardless of what I listen to on the radio, but it was NPR that lead me to the University of Chicago, to Dr. Hurst, and that allowed me to lose it in the best possible way– with a great outcome!

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Kyle called this morning and pledged our first donation to our local NPR station. When his name was read on air I felt proud. He shard my story when he called and I have to admit that I couldn’t hold back the tears when it was broadcast for all to hear.

What a difference a year makes!

This weekend was filled with St. Patrick’s Day celebrations, and the anniversary of my 1st surgery!

I honestly can’t believe the difference between this year and last, and the thought of explaining it is overwhelming. That’s why I am going to use a series of photos that I think show what I want to say perfectly.

Last week I turned 27!

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Here I am on my 26th birthday…

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(March 15, 2013) I am celebrating my  first surgery…

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And here I am celebrating a year later! (March 15, 2014)

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This is St. Patrick’s Day 2013…

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And 2014!

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I feel great and think these photos show what a difference this past year has made in my life. If you are thinking about having J-pouch surgery to cure UC, I cannot recommend it enough! In just one year I have regained my life! The only thing I regret is not doing it sooner.

J-pouch life (energy)

Energy. I FINALLY have some! Don’t go signing me up for Boston just yet, but I am steadily on my way.

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I didn’t realize just how out of shape I had become over the past 8 years. I knew that I was no longer the strong, energetic, distance runner I had been for so long, but I usually had enough energy to to live what I refer to as my half life. You see, when you suffer from a chronic illness, not all of your days are bad and sometimes the pain and fatigue can be held off for a few hours, or even a weekend. I had gotten used to saving up all of my energy for when I wanted to use it that I forgot what it was like to be productive on a daily basis. This half life that I was living allowed me to hide the worst of my illness from the outside world and kept me in denial about how bad things had really gotten.
One way to explain my half life is like this: when you have a depleted resource, you ration it. Physical energy was my depleted resource. I chose to save it up for social occasions. This means that during the week I would rest on the couch and expend as little energy as possible so that I could hang out with friends on a Friday or Saturday night. For a few hours I would forget that I had UC and pretended that I was normal. Then, I would have to pay for my fun with more days on the couch and visits to the ER for IV fluids (I have honestly lost count the number of times I had to go in for IV fluids)! Looking back, it was a foolish way to live, but remember I was 18 when I got my diagnosis and 26 when I had my colon removed. If your early 20s are not the time to live foolishly, I don’t know when that time would be.
Now I am glad to report that I can make the bed, do some laundry, go on a walk, search for jobs, and make dinner all in one day!! I know that this sounds like just a normal day to most of you, but it is a huge deal to me. I am walking everyday and even got up to a little jogging this week! As I mentioned before I am still a long way away from my goal of running Boston, but I finally feel like it is an attainable goal! My training will no longer be interrupted by the symptoms of UC, or the surgeries for my j-pouch. I have left my half life behind and I see nothing but a full life ahead of me!

J-pouch life (eating)

I have been living with my j-pouch for almost 3 months now! It is strange NOT to be gearing up for another surgery at this point. Strange, but great! A summary of my 2013 goes something like this: In January I learned I needed surgery, two months later, in March I went under the knife for the first time. Three months after that, in July, I did it again (surgery #2)!! Add another 4 months to that and I am into November and my 3rd surgery! Now the pattern has been broken and I don’t plan on having another surgery, hopefully, ever again!
So, you might be wondering what life is like with a j-pouch? Well, to be honest I am still figuring that out for myself. One thing I know for sure, is that it definitely beats my life with UC!
Eating is my main focus. I am constantly thinking about food. I eat every 2-3 hours while I am awake and get up at least once a night for a snack. My dietary restrictions have been lifted (except for popcorn), so I can eat anything I want, I just have to make sure that I stay on top of it. If I go too long without eating I start to feel awful, and it is exhausting to always be thinking about the time and what I will eat next. (I know that having to eat whatever I want all day long sounds like more of a dream come true than a problem, but trust me it is hard to live a normal life when you have to stop every couple of hours to eat.) Also, nobody else I know needs to eat this often so most of the time I am eating alone. I hate when Kyle is not hungry for dinner yet but I am, and then when he is ready to eat I am still full. The key is to get into a routine and figure out (through trial and error) what foods keep me full the longest.

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I have found that I have the most success when I eat carbs and proteins together. Some of my favorite meals and snacks include: tacos (soft shell), chicken and rice casserole, grilled cheese sandwiches, potatoes (prepared any and every way), cheese and crackers with apple slices, and pizza. The best news (to me) is that I can enjoy fresh fruits and veggies again! I love to have a small salad with my dinner meal, I just make sure that I chew it really well and eat it after my main course instead of before, and I am back to eating bananas! I always keep in mind that properly chewing my food is very important, so I tend to avoid foods that tire out my jaw. Other foods I try avoid or at least to limit are greasy, spicy, and acidic foods. The greasy foods slide out too quickly and the spicy and acidic foods cause a lovely issue known as butt burn (more on that another day).

One Year Ago Today…

I have the feeling that I will be repeating the phrase “one year ago today” quite a bit in 2014.

I said it today.

One year ago today, I went to the University of Chicago for a GI appointment with Dr. Cohen. There I learned that I could get my life back. I learned that I needed surgery.

One year ago today I realized that my life was going to change.

I am now just over 2 months post-op from my final surgery. I am feeling stronger and better each day! I can’t explain in words what is feels like to be well (and I am not even back 100%) again! There are not too many life events that are celebrated year after year, besides birthdays and  wedding anniversaries, of course. But in 2014, I am going to add a date (or two) to my celebration list (I think I have earned it)!

Here’s to today!

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(my sister toasting our wedding 6.4.11)

Happiest New Year!

2013 has been quite the year for me! Three surgeries and a j-pouch later, I am more than ready to put 2013 behind me and move forward into 2014. If you had asked me on this day one year ago, I would never have guessed the life altering changes that 2013 would bring.

I am looking forward to a HAPPY and HEALTHY new year. It is something that has eluded me for the past 7 New Year’s celebrations. I guess the 8th time is the charm?!

I am getting accustomed to my j-pouch, and New Year’s Day marks the 2 month milestone. For the most part things are on the up swing, some climbing faster than others. It is great to not feel sick anymore, but my energy, strength, and endurance are slow to come back. I am trying to remain patient, but after waiting 8 years to finally feel well, it is tough.


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Happy New Year to all of you! We wish you a healthy 2014!