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

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"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

Part 3: Diet and Pain Spasms

If you eat a meal with me, you may wonder if I was ever educated about the food pyramid. Surprisingly, I was actually raised like a normal person, even though I did some weird things like make families out of matchbox cars and believe that bears could talk until I was eight. 


Although I always liked brownies, they have become a major element in my UC diet. As diet may contribute to flare-ups and remission, I am very careful about what I eat. My diet excludes red meat, whole grains, alcohol, caffeine, carbonated beverages, raw fruits and vegetables, milk, tomato sauce, acidic food, hot chilis, high fructose corn syrup, corn, cold things like ice and ice cream, MSG, fried food and greasy food. It is important to remember, however, that each UC-sufferer has a different diet and that diet may change with remission and flare-ups. To take the example of my dad, when he is in remission, he eats raw cauliflower like none other. He's weird. The main take-away point of this depressing list is that I can still eat brownies, cake and cookies. Sometimes I eat eight cookies a day. That takes effort! I used to be resentful of all the delicious food I couldn't eat, but at this point I have accepted the way I have to eat. In fact, I have no desire to eat a french fry because I know that I might be sick for days afterwards. 

Sometimes I say "sick" and it sounds vague. While it is in one part because you probably don't actually don't want to know the details, I will do my best to enlighten you. More than having the gross symptoms I outlined in my first blog post, pain spasms are the biggest element of being "sick" for me. They start above my belly button and are extremely painful. The best way I can describe them is like a snake of stabbing pain traveling through my intestines. They can be set of by walking, running, arguing or obstacles. For example, if someone walks into me when I'm not expecting it or if a door is closed when I thought it would be open, I might have a pain spasm. They often end in a trip to the bathroom palace. Sitting down, counting to ten and breathing slowly helps. For me, pain spasms are about mastering the pain and not collapsing. When I'm in public, I don't want to draw attention to myself because I'm falling all over the place. Sometimes this can be extremely difficult and I collapse anyway, but as I have gotten better since my semester off, I can usually act normally. When I have a pain spasm in class it can be difficult to concentrate and listen to a lecture or participate, but since I usually feel better after a couple minutes, I can get back into what the professor is talking about. 

In terms of the bigger picture of how UC has changed my life, my focus is now on my health. I can't go to developing countries, which was always a dream of mine, because of health care and dietary restrictions. I took a semester off and I couldn't study abroad. Because I love foreign languages, that was hard for me. Now I have a different perspective on the important things in life, which is in some ways a great gift. Little things are just little things, and as long as I'm not in the hospital (and maybe even if I was in the hospital), I have many things to be thankful for. At the same time, I am still scared beyond words of getting so sick again that I can't get out of bed for months. UC is a chronic illness, so I will always have to address it. At this point, you might be wondering if I forgot about the surgery. I haven't, and I'll talk about it next time. Before then, I will eat 10 cookies.

What My Medicine Cabinet Looks Like

This is not actually my medicine cabinet, but a random picture from the internet that came up when I typed in "medicine cabinet full medications." This person must be sick too. You get the idea. In fact, one of my favorite things to do is fill my pill box every week because it reminds me of when I used to help my grandmother with her pills. In case you were wondering, I am too lazy to take a picture and upload it. 

What is Ulcerative Colitis? Part 2: Drugs!

Medications are a big part of life with Ulcerative Colitis. There are different classes of medications, including biological treatments, immunosuppressive drugs, corticosteroids and aminosalicylates.


Biological treatments, administered through an IV or a shot, have anti-TNF agents, which inhibit the body's inflammatory response but have potential side effects such as lymphoma, infections, congestive heart failure, demyelinating disease, a lupus-like syndrome, induction of auto-antibodies and injection site reactions.


Immunosuppressive drugs have the same goal of preventing the immune system's activity and also have nasty side effects because the immune system is less able to resist infections  and the spread of malignant cells. Both biological treatments and immunosuppressive drugs are calculated according to body weight, so the more I weigh, the more medications I can take! That's why I eat so much cake.


Corticosteroids reduce inflammation and are generally taken for a short period of time because they have harmful long term side effects, including osteoporosis and diabetes. In the short term, side effects can be a moon face, weight gain, acne, mood swings, insomnia, increased energy and concentration. Luckily besides making UC sufferers feel great for a couple months, corticosteroids also make triple-tasking really easy. For example, my family always jokes that my dad got his MBA degree in night classes because he was taking a corticosteroid.


Last of all, aminosalicyates are used to treat mild to moderate UC and are, surprise, anti-inflammatory drugs. At the moment, I am taking a biological treatment called Remicade. Every 6 weeks I go to the hospital to receive a 3-hour infusion that is essentially like a very low dose of chemotherapy. I am also taking an immunosuppressive drug called Azathioprine, which comes in pill form and is taken every day. I have taken all four classes of drugs, and I will relate the saga of my drug journey (if I can even remember what happened. No just kidding) in a future post. 


The tricky aspect of medications is the balance of side effects and positive effects. From the list above, it is clear that the side effects can have harmful long term effects that can outweigh the positive short term effects. Sometimes I feel sick just because of medication and not even because I have ulcers in my colon! That's just silly. In the end, the cost of drug treatment on a UC sufferer's health has to be compared with the last-ditch option for UC, which is a colectomy, or surgery to remove to the colon. But don't get ahead of yourself. I'll talk about that later.


One of the words that you might have noticed in the never-ending drug list was "steroid." If you haven't seen me in person, you might even think I was an athlete. I am sorry to disappoint you, but I'm not an athlete and I haven't exercised since I got sick because it makes me feel even worse. Steroids are a major element in any drug treatment for colitis because they can rapidly improve a patient's health and even induce remission. As UC is a chronic disease, it is all about remission and relapses. For many people, a corticosteroid called prednisone can bring them back into remission. Prednisone is also used for rheumatoid arthritis, organ transplants, asthma and other things you don't want to have. Sometimes people call it a miracle drug, but the truth is that any drug that makes someone who is very sick feel better seems like a miracle drug to them. 

The details about drug treatment can seem overwhelming. No drug is without its drawbacks. Most people respond to one drug combination or another. The encouraging aspect about drug treatment and medical research in general is that progress is being made all the time. In fact, one of the biological drugs I tried had only been on the market for six years. In another six years, who knows what may be available. Judging from what I just outlined, you might not imagine that patients can run out of drugs to try. Nonetheless, it happens to many UC sufferers, and for various other reasons, 25-40% end up getting surgery. But that's for next time!

How to Visualize UC

This is how I think of UC. The colon is shaped like an upside-down U, just like an un-smiley face. In general, my colon has been unhappy lately. When I'm having a great day, sometimes I draw a smiley face on my stomach just to stick it to the un-smiley face inside.

What is Ulcerative Colitis? Part 1

Ulcerative Colitis (UC) is commonly believed to be a chronic autoimmune disease, which means that the disease is caused by the immune system fighting against the body.  UC is NOT contagious and does NOT stand for University of California (this can be confusing, I know). The primary symptom of UC is ulceration in the colon. Some people have a genetic predisposition, like me. My dad was diagnosed with UC when he was in his 40s. It is not the most common disease, occuring in 35–100 people for every 100,000 in the United States, or less than 0.1% of the population. Nonetheless, it is in the Irritable Bowel Disease family, which also includes Crohn’s Disease and IBS. Altogether, there are many of us walking around, believe it or not!

You may be wondering what causes UC and worrying if you could come down with it tomorrow. It might be caused by stress of overuse of painkillers, but there is no consensus in the medical community.  It can also be triggered by an infection, such as food poisoning. In fact, I myself ate a fateful kebab in Granada, Spain, and I have been sick ever since. It is unlikely that you will get it. 

The primary method of diagnosis is through a colonoscopy. That word is nasty but will be used in the future, so you might as well get used to it. After a colonoscopy doctors prescribe medications depending on the severity and location of inflammation. However, it is important to keep in mind that each sufferer’s experience with the disease is different. There is no universal way to live with UC. For some, a change in diet can make them feel dramatically better. Stress is correlated with flare-ups, so it is also essential to learn how to live in a relaxed lifestyle. Personally, I take a three-pronged approach: Medication, Diet and Stress Management. There are some aspects of the disease that are outside of my control, such as how I respond to medication. This can be discouraging and make me feel helpless sometimes. However, I do have control over what I eat and how I approach challenges in my every day life. I do my best to minimize the negative impact diet and stress could have on my health.

Even though UC isn’t fatal, it has some horrible side effects and symptoms. If you are squeamish, this is the time to look away. What I like to call primary symptoms (because they directly result from having an ulcerated colon) include cramping, internal bleeding, diarrhea, urgency, pain spasms and vomiting. Yuck! Other symptoms, which are caused more generally by having an autoimmune disease, having nutritional deficiencies and being sick, include fevers, extreme fatigue, nausea, weight loss, anemia and loss of appetite. If you are getting worried, remember that UC is not fatal. It’s a question of quality of life.