My Story: The Saga Part 1

I spent the summer of 2009 as an Au Pair in Spain. When I was traveling through Granada to see the Alhambra, I stumbled across a fateful kebab stand. I had one for lunch and went back for another one for dinner because it was so good. Unfortunately, I ended up with food poisoning and I was never the same again. In fact, there has been speculation in the medical community about a possible bacteria that might cause Ulcerative Colitis. Luckily, I got up the next morning and was able to visit the spectacular Alhambra. I then continued on my way to my host family near Valencia. 

That summer was very difficult. I suspected that I had Ulcerative Colitis but the only way to diagnose IBD is by a colonscopy, which was obviously not an appealing or affordable option in a foreign country. I wrote home to my parents about my concerns, but they could only try to help me stop worrying because there was nothing to be done.  

I have always felt worse in the mornings. Luckily, the girls I took care of went to the golf course in the mornings so the painful hour or so after I woke up did not interfere with my (amazing, duh) Au Pair abilities. I went to the doctor fairly frequently, but I was still embarrassed about talking about my symptoms, so he just gave me some pills to take every day. I still do not even know what they were or if they helped me. Surprisingly, I still consider that summer to be the best summer of my life. My host family was incredibly nice and hospitable, had a pool, and lived a block from the beach. I went to the beach every day and learned how to live the relaxed life, which came in handy when I had nothing to do during my semester off. Most importantly, I was doing what I love best: learning to speak a foreign language and immersing myself in another culture. 

The day after I returned to Georgetown, I went to the Student Health Center, which referred me to a Gastroenterologist at Georgetown University Hospital. The saga of getting diagnosed officially began. Initially, my doctors thought I had Celiac disease, which is an allergy to gluten. I set off on a gluten-free diet, an unfortunate mix of foods that make a horrible diet for someone with UC. The UC diet actually avoids high-fiber foods like fruits and vegetables, which are essential for a gluten-free diet. The first time I went into a supermarket when I thought I had Celiac disease I started crying because I saw all the aisles of cookies, bread and pasta that I couldn't eat. Luckily that's not a problem now. It's pretty much the opposite. 

And remember, at that point, I hadn't even had a colonoscopy (Didn't I warn you that colonoscopy would be a common word in this blog?) yet! Colonscopy colonoscopy colonscopy. A month after I got back from Spain, I finally experienced the wondrous jello-diet and laxative experience that is a colonoscopy. The results showed left-sided colitis, which means that only the lower portion of the colon (on the left) was ulcerated. Left-sided UC is usually more mild than pan-colitis, which means that the entire colon is ulcerated. My doctor did not prescribe me any medications and simply sent me home. Luckily, I had my good friend Ghislaine, who incidentally happens to have UC as well, to help me process the diagnosis and prepare myself for my new future. 

I continued to struggle with delibitating symptoms without treatment as the fall semester advanced, such as internal bleeding, frequent bathroom trips, weight loss, terrible nausea for hours every day and a general lack of interest in food. To just give you an idea of what a day in the life of Emily was like, if I ate anything before 1 p.m. I threw it up. Unfortunately, I am usually hungry as soon as I wake up. Even though I couldn't eat, I was starving and thought a lot about food. Once in class, scoping out the nearest classroom exit in case the urge to throw up got the better of me was the first thing that crossed my mind.  


When my parents came to visit me in October, I realized that I had been in denial about how sick I was. I hadn't been assertive enough and I should have asked my doctor about medications right away. I was in such denial that I hadn't even told my parents that I had been diagnosed with UC until they came to visit and there was no way pretending that everything was normal. Somehow, I knew that talking about it would make it seem more real and I didn't want it to take over my identity. A couple weeks later I started taking the pill Lialda, which is used to treat mild to moderate colitis (an aminosalicyate!). The doctor also neglected to tell me that it would take two to three months to even start working. I entered the state of waiting that I associate very closely with having a chronic disease. I seemed to constantly be waiting on doctors to call me back, test results to come back, drugs to work or medical decisions to make. Waiting for five hours to get a ticket to see Obama? Piece of cake!

You probably gathered from the above that I was not entirely happy with my care at Georgetown Hospital. Throughout my medical experiences, I have learned the tremendous importance of personal and emotional attention from professionals whose job description does not include helping patients cope with life-changing diagnoses. For me, having a chronic disease entails more than keeping track of symptoms and progress. It is also coping with having a life different from the one I had always envisioned. When a doctor acknowledges that, it makes a world of difference. 

Sometimes I wish that I had not eaten a second kebab, but I also know that I would have probably gotten sick at some point because I have a genetic predisposition. It easy to get caught up in "what if" scenarios and forget that living in the present, despite how difficult it may be, is the best thing I can do. 

My ward in the Mediterranean at night

Bringing American brownies to Spain 

Martina, the most adorable Spaniard. She's #6 in Spain in golf for her age group!

Photos from Tedx

Add caption

"Colonoscopies are gross"

http://www.flickr.com/photos/tedxgeorgetown/5593081047/in/photostream/

TedxGeorgetown

This week I had the exciting opportunity to give a talk at TEDxGeorgetown. The theme was the internet, so I spoke about how the Internet helped me through last semester. I thought I would put up the general text of what I said.

I have had quite a personal experience with the Internet. Two years ago I was diagnosed with Ulcerative Colitis, an autoimmune disease that is not fatal but that can have drastic consequences for a sufferer’s quality of life. Symptoms include internal bleeding, extreme fatigue, cramping, weight loss, anemia, and most importantly, going to the bathroom many many times a day. This can be an embarrassing subject to talk about, which is why the Internet has been so important for my personal journey. It can be difficult to explain my experience in detail to people whose lives are very different from mine, especially those my age, how hard it is for me to get through a day. I don’t exactly run around broadcasting the results of my latest colonoscopy because people would probably run away from me. 

Last summer I fell dramatically more ill and by August it was clear that I couldn’t go back to Georgetown. Essentially, I was stuck in my house for three months. Like most people of my generation, I used the Internet to help fill my days. I spent time on websites that are usually considered procrastination tools, but for me, were of course substantial activities. These included the usual suspects: Facebook, newspaper websites, youtube and gmail. However, the Internet soon began to serve more than an entertainment purpose.

One of the challenges I faced during my semester off was feeling incredibly alone. There was no one immediate who I could turn to who was sharing the same experience. I had no idea what was going to happen to me: if I would ever get better, how I would get better, and what the future held in store for me. I was looking for answers, and thankfully, the Internet had some for me.

I quickly found blogs, message boards and the Crohn’s and Colitis Foundation of America, all of which teemed with people just like me. They shared which mediations they were on, how long they had been on them, the last time they had been to the hospital, all about their colonoscopies, just because they can…you get the idea.  I found inspiration in stories of people who have gone on to lead healthy lives and successful careers. Of course, their stories were not all encouraging, just like anything in life. There were people who had been extremely sick for years. A vital safe space was created by the sheer knowledge that no one would look on Ulcerative Colitis message boards for fun. More importantly, like me, there were people looking for human connection with people who shared their experience.

The Internet helped me feel less alone and convinced me of our basic need for human connection, in one way or another. When a topic can be difficult to breach, the Internet can be the perfect remedy. We are all looking for answers to the uncertainty of what lies ahead. That is what makes the human experience universal. Even though I am back at Georgetown, I am still sick. I have started my own blog, and hopefully I can help others realize that we don’t have to feel alone. 

Here is the link to the event website:

http://www.tedxgeorgetown.com/speakers.html


Here are links to two articles from Georgetown newspapers:
http://www.thehoya.com/guide/tedxgeorgetown-conference-1.2111231
http://blog.georgetownvoice.com/2011/03/24/tedxgeorgetown-recap-why-we-need-moar-internets/#more-26743

I will post the video as soon as it becomes available.

Too sick to get fat

Times I have worked out since getting sick = 0

I win!

If this wasn't a picture of my own medicine cabinet, I would be jealous too

This is actually my medicine cabinet. All the medications are related to UC. 

The most important thing about this picture is the peeling paint. They should be paying me to live here, not the other way around.

All you ever wanted to know about a surgery you will never have

The surgery for ulcerative colitis is called a colectomy. It is the only cure. Essentially, surgeons remove the lower intestine and reconnect the digestive tract. Who ever thought they needed a colon anyway? 

The entire process actually consists of two to three surgeries. In the first surgery, the colon is removed laparoscopically - several tiny incisions are made in the abdomen. It takes about a week on morphine in the hospital to recover from the first surgery, then four or five weeks at home. It is extremely painful. Just to imagine, an entire organ is removed and stomach muscles are cut. With the first surgery comes a contraption called an ileostomy bag. It's not the most romantic thing on the planet, trust me. Because the patient doesn't have a colon anymore, waste has to go somewhere. Surgeons turn the intestine inside out and create a stoma, or opening in the stomach, where waste can leak out into the ileostomy bag. 

In the second surgery, surgeons reconnect the digestive tract. The ileostomy bag goes away and the patient looks normal again, except for the scars. It takes another week on morphine in the hospital and then four or five weeks at home to be able to do simple activities. All in all, it actually takes six months to one year to recover. Right after the second surgery symptoms get worse. Because the purpose of the lower intestine is to remove water from waste, people who get colectomies will have diarrhea ten times a day for the rest of their lives. But..no pain spasms, internal bleeding, horrible drugs, time off or dietary restrictions. 

In general, doctors' mantra is that it is better to heal the colon than to lose it. After all, it's no appendix. Lots of people with UC lead healthy lives and have successful careers. A great example is my dad. In addition, there may be new treatments in the future. As long as I'm not the hospital, there is no rush to get surgery. The surgery has serious risks, including contamination of the peritoneal cavity, peritonitis, sepsis and death. In addition, since it involves surgery in the pelvic area, there is a very real chance that I would never be able to have children. That's a scary prospect and something that will have consequences for the rest of my life. I can always have the surgery in the future, so it's better as long as I can survive without it. 

The two-step surgery is relatively new. Before, people had colostomy bags for the rest of their lives. In fact, my doctor at Georgetown Hospital would give me a colostomy bag until I had children in order to avoid the risk of infertility. There is no way I would want a colostomy bag for 20 years, but luckily my surgeon at UCSF doesn't share the colostomy strategy. Another concern is how people age with the surgery. Because it's so new, doctors don't know! Like any surgery, it might require future surgeries with advancing age. At the same time, as my surgeon at UCSF Medical Center told me, "No one ever regrets surgery!"

I have been struggling with the question of surgery for almost a year. Last fall, I was sick enough that there was no question that surgery was the next step. However, I eventually responded to an immunosuppressant that makes me functional, so surgery isn't entirely necessary at this point. Still, if I don't go into remission, I will have to have surgery. Having an inflamed colon for a long period drastically increases the risk of colon cancer. The way I think about it, if I were dead, there would be no point in not being able to have children, so that risk doesn't count. Besides, if I were really sick after resisting surgery, I wouldn't be able to take care of children anyway. If I had surgery, my future would be much more certain. I wouldn't have to worry about having a flare-up overseas and my opportunities would open up. I could live abroad and party every night! Ha, right. 

More importantly, I wouldn't have to worry about having a flare-up in the future. As it is, I sometimes hesitate to make plans months in the future because I have no idea if I will be well enough to do anything. Obviously, there are advantages and disadvantages to the surgery. It is a decision that I will have make on my own because I am person who really knows best. Although that's a scary thought, I am also confident that I will make the right decision. Sometimes I feel like I have just had enough and I would take surgery over the struggle of getting to class every day, but I have tried not to be too hasty. In the end, I know that I will healthy one way or another. The hardest part is the fight for remission. And even if there are harder times ahead of me, as long as I try to take each day as it comes, I will be fine. 

To get a good idea about what the surgery is like, my friend had a blog when she had surgery. Don't read it unless you want to feel nauseous and know disgusting details. But then you will really understand why the surgery is no fun.

http://kelly-uc.blogspot.com/

If this was your diet, you wouldn't be too sad either