Me vs Colon

Thursday, November 20, 2014

Good news! I've enjoyed another year and a half of good health and I've been making the most of it. Feeling that the European adventures that helped me recover my non-sick identity were not over, I decided to spend the 2013-2014 academic year as an English teaching assistant in Madrid, Spain. France is like a second home to me so adapting to life in Spain was the most challenging experience I have had since being sick. I appreciated the opportunity to devote my energy and anxieties to something not related to health. By the end of my nine-month stay in Madrid, I had become comfortable with Spanish culture and reluctantly moved back to Washington, DC to look for a job that better aligned with my studies. A month ago, I accepted a full-time job offer from a company in California. I feel incredibly fortunate to have a bright future that I would never have imagined just four years ago.

In August, I went backpacking in California with my family for a week. It was my first remote hiking trip since my illness and it was both scary and affirming. Backpacking food is not particularly j-pouch friendly (last summer, I got a blockage on the hike out from a short backpacking trip because I ate a really cold power bar that I couldn't digest) and our route took us far from any medical help. In the event of a serious blockage, someone would have had to hike 10 miles and up 2,000 feet of elevation gain to get a helicopter from the National Park Service. Waiting that long with the pain that accompanies blockages would have been torture. Nevertheless, I decided to go ahead. I try not to let hypothetical medical complications dictate my life or prevent me from participating in activities, like backpacking, that are important to me. My family was very supportive and made sure that I had the most j-pouch friendly food possible. The trip was fantastic and encouraged me to be adventurous in the future. Although getting up nightly was not a picnic, the wilderness is also a great place for j-pouches because behind every boulder is a potential bathroom. I really impressed my family with my quick trips. If only they were so lucky!

Last week I had a pouchitis scare that luckily had a good ending. In an effort to say goodbye to friends before moving to California, I have been eating out at restaurants more than usual over the past month. However, I generally avoid eating out because any food that is not simple is likely to upset my stomach. After a few weeks of lunches and dinners, I noticed I was going to the bathroom more frequently and had more cramps. Although I hoped I would feel better, I started feeling significantly worse and eventually came down with something that felt like food poisoning. I was very worried that I had pouchitis because unlike other stomach bugs I've had since surgery, this distress came on gradually. I called a few of my doctors to try to get a prescription for the standard pouchitis antibiotics (basically the only way to cure pouchitis) but didn't have much success because I hadn't been seen for years - I've been abroad. I did have a funny interaction with an advice nurse who was confused as to what my "pouch" was. No, I'm not a marsupial! The experience of negotiating with doctor's offices and feeling uncertain about my health was stressful and reminded me of the months I spent during my illness wondering if I would ever get better.

Surprise surprise...I completely fell apart and catastrophized about a trip to the ER in the event I did have pouchitis and couldn't get antibiotics. I am on my parents' health insurance until I begin my new job, and outside of the San Francisco Bay Area I only have coverage for ER visits. The situation made me feel vulnerable and slightly out of control. The idea of pouchitis terrifies me because I know it can become chronic. It wouldn't be as bad as Ulcerative Colitis, but still would involve cramps and many many trips to the bathroom. I have had an amazing three years after my surgery and I was devastated at the prospect of another trying health condition. Although I knew I had the strength to rise to the challenge, I couldn't bear the thought of it. Fortunately I felt much better after a 48-hour protein shake diet. The experience reminded me how lucky I am to be doing exactly what I want - living independently, working, traveling, socializing, and most importantly, taking my health for granted.

I had a thought-provoking conversation with a friend a few days ago about the effects of suffering on my relationships. For the first few years after my surgery, my illness was still a huge part of my identity and I felt like people who hadn't experienced it with me or hadn't suffered themselves didn't truly understand me. This week I realized that I no longer feel disconnected from non-sufferers, which means that I have moved on from UC in a substantial way. As time goes by, I am excited to see where my past leads me and what I continue to discover about myself.

July 4th in London!

Saturday, July 27, 2013

Fewer organs, fewer problems

Hello again, I haven’t updated this blog in over a year because I’ve been doing very well. First of all, thanks to all of you who donated to the Crohn’s and Colitis walk. I really appreciated it.  

Since I last wrote, my pouch has learned how to be a better replacement lower intestine. When I look back at how I was a year and a half ago, I am amazed at my improvement. Although it was very gradual and the number of trips I make to the bathroom greatly depends on what I eat, my quality of life is dramatically better than it was in the months after my colectomy. MRSA hasn’t made a comeback for almost a year, and I’m crossing my fingers that I scared it off for good.

So what have I been up to with one less organ getting in my way? I just spent eight months in France teaching English in two elementary schools. I had a fantastic time and I’m going back to teach English in Spain in September. When I was sick with Ulcerative Colitis I was very dependent on my parents, and while it's good to be a little dependent on other people, I lost some sense of who I was. When I was sick, I was Ms. Sick, and my senior year of college, I was Ms. Not-Sick-Anymore. In France, people didn't know about my illness unless I told them. It was really empowering. And pretty cool to be able to say, oh by the way, I don't have a colon or, oh this scar is from when I was stabbed in a bar fight. Of course, I value my friends who supported me during my sick years immensely because that's when I learned what true friends are. As much as I tried to avoid letting my suffering define me, it has become an integral part of who I am, and I have learned that it’s much easier for me to relate to people who have also suffered.

In May, my parents came to Europe to travel in Italy and southern France with me. We hiked quite a bit in Corsica, which was the first mountainous hiking I’ve done for almost four years. It’s relatively easy for me to hike in wild places because practically the entire landscape is a bathroom, and there aren’t many people around to stumble into an awkward situation. I was careful not to eat adventurous food and I had no problems. Spending time outside is very important to me and my trip reaffirmed that I will be able to live a normal life. In fact, that’s what I’m doing right now!

Semi-outdoors situations are the most challenging for me because bathrooms can be few and far between or nonexistent, and the landscape is definitely not one big bathroom. I’ve never really had an issue, but semi-outdoors situations just make me nervous. Europe could be difficult at times because bathrooms are not regarded like a public good in the way they are in the US. In France, they have a way of making you feel so bad for inconveniencing them with the mere question of using a bathroom. In February, I had a bad case of food poisoning or the stomach flu that made me worried I had pouchitis (a bacterial infection with similar symptoms as Ulcerative Colitis that requires antibiotics), but after 24 hours it went away, and after one week I was back to normal. I tried taking the refrigerated probiotic VSL #3 that is supposed to really help J Pouches but I'm not sure how much it helped me yet. It may have coincided with a bad couple of tummy weeks (I started taking a vitamin that may have upset my stomach), so I will try it again after a couple more weeks. My life is a constant science experiment. 

What advice do I have for someone who is sick and thinking about surgery? It’s definitely a last resort because there’s no going back. My dad, who also has Ulcerative Colitis, has been remission for seven years and hasn’t had the surgery. Although he does have to live knowing that he could have a flare-up at any time and be very sick, he has a healthier diet than me and he doesn’t go to the bathroom as much. For other UC sufferers, however, remission may not seem likely. Some of the drug combinations, like Remicaid or Humira and Azathioprine, are terrible for you and not worth taking if they don’t work (get outta here, leukemia). The surgery really can cure UC and make a normal life possible again. The day of my first surgery was the best and happiest day of my life. That said, the surgery doesn’t always work and can involve horrendous complications. There’s a tradeoff, like everything in life, and I think the patient is the only one who can make an educated decision about their body. It's also helpful to keep the big picture in mind; this too shall pass. As bad as a situation can be, there's a 100% chance that it's not going to stay that way. It could get worse, but hey, it's going to change. If it gets worse, you can look back on the good times, and if it gets better, you can look back at how far you've come. 

What advice do I have for someone who has a sick friend or loved one? Firstly, you don’t know how they feel, so that’s not what they want to hear. I believe the best thing you can do is just be a good listener. Many people are sick often feel isolated because those around them do not share their experiences, so simply listening to those experiences can make them feel better. Sincerely asking “How are you?” is really appreciated. Other than that, helping with practical things like picking up prescriptions (thanks Ghislaine) and grocery shopping (holler, Vik!) makes a big difference for people with UC or Crohn's. It was really difficult for me to walk the mile to CVS and back when I was a student at Georgetown, and when a friend offered to get something for me, it made my week.

Although terrible things happen in the world every day, when I was sick, I encountered an overwhelming amount of good from friends, family, professors, health professionals, and colleagues.
Me in Corsica

Wednesday, May 23, 2012

Take Steps for Crohn's and Colitis

On June 9th, I will be participating in the Take Steps for Crohn’s & Colitis walk, the nation’s largest event dedicated to finding cures for digestive diseases.  If you follow this blog, you are aware of how Ulcerative Colitis changed my life and caused me pain that no one should have to endure. In June, I am walking with Team UCSF because I want to save millions of people like me from my suffering. I just graduated from Georgetown on time, even with a semester of medical leave, and with honors, despite the endless doctor's visits, daily unbearable pain, nausea, fevers, fatigue, weight loss..the list goes on. There is nothing I would appreciate more than a gift that would help the sick.

Please donate only as much as you are comfortable with. Every little bit will help. You can donate here:

Tuesday, April 24, 2012

A Visit from MRSA and what lies ahead

A couple weeks ago I ended up in the hospital for a condition unrelated to my intestines, a refreshing but boring experience. Long story short, I contracted Cellulitis, a deep tissue skin infection, on my face. In fact, it was in the "triangle of death," the area above your nose and between your eyebrows. Apparently, since veins run from the "triangle of death" to the brain, any infection is a big deal. After my face swelled up and I looked like an alien, I walked to the Georgetown Hospital ER and learned that Cellulitis was the culprit. It is usually caused by Staph or MRSA (drug-resistant staph).

Although Georgetown gave me a dose of IV antibiotics and some antibiotics to take home, a few days later Cellulitis made another appearance. I went straight back to the ER, not expecting a long hospital stay. That's what I got. I felt fine and looked fine because the swelling had subsided but the doctors were not taking any chances. They did a test for MRSA that came back positive (and only then did they decide I should be in isolation...after I had been in a double for four days when they knew I probably had MRSA). Then they finally let me out and I headed straight to a party. I mean, it's me after all.

MRSA made my plans for a rafting trip down the Grand Canyon out of the question. Initially I was uncharacteristically upset, and after I reflected on it, I realized that it was about much more than missing a really deep canyon. The trip was a symbolic culmination of my post-surgery life, an adventure that would have been impossible with Ulcerative Colitis. I would have been on a raft around seven hours a day, a nightmare for anyone with bad UC or Crohn's. I would have been with my family, the people I care most about seeing me healthy and happy. Then I thought about how well my recovery has gone, and I realized that the Grand Canyon would have been just the first of many outdoor adventures. I am more committed than ever to taking a long backpack trip in Yosemite this summer, my favorite place in the world. So I felt a little better. I also took advantage of my free time (I had done all my schoolwork early) to dominate the Assassins game I was playing. My spy mastery made me feel very accomplished and reconsider a career in the CIA. Cellulitis has not been seen since (I clearly killed it, too).

I could elaborate on my hospital stay - it made UCSF seem like a resort - but the most relevant item to UC was the issue of antibiotics. Antibiotics are never a good thing for someone with intestinal issues because they clear out the "fauna" in your intestine and make way for nasty bacteria like C-Diff or pouchitis. When I got MRSA, I thought it was just a matter of time until my J-pouch started acting up. In the past few days I have been going to the bathroom about 10 times a day, which is much more than the usual four. I can't know if it's pouchitis until I have been off antibiotics for a while, but I'm crossing my fingers.

In terms of future plans, I accepted an English teaching position in Bordeaux, France for the 2012-2013 academic year. I am so incredibly excited and ready to put my adventure hat on again. It's been too long! This summer I'm going back to California to save money for the travels I'm already planning. After a couple of brutal years, I am ready to have some fun.

Unfortunately, one of the members of my IBD support group had a bad turn with Ulcerative Colitis/Crohn's and she has to have an emergency ileostomy surgery that will likely take place tomorrow. Please send good vibes to Meredith, who has been such a champ in the past year.

After I assassinated people

Tuesday, January 17, 2012

Happy Trails

On the beach in Hawaii, getting in fish camouflage before snorkeling
Quite a bit of time has gone by since my last blog post, which shows how well I’m doing. Although my recovery is now very gradual, I am much better than I was four months ago. I am much more adventurous with food now – over the winter holidays I had deep-dish Chicago style pizza, also known as tomato central. I hadn’t any for more than three years and it was just as good as I remembered! I still avoid certain foods like lettuce, raw onions, spicy things, and caffeine. While some people might be glad they could avoid lettuce, I actually really like it (…but for the salad dressing, of course). Maybe I will try eating some in a few months.

I also went backpacking in Hawaii over the winter holidays! Initially I decided not to go because I didn’t think I was up to it. As the rest of my family got ready to go, however, I realized I was done with being a “no” person and since my family would support me if I had any trouble, a trip with them would be the best possible way to get back into backpacking. And I am so glad I made that choice! To my surprise, there were actually compost latrines by each campsite, so it even surpassed my expectations. We hiked over twenty miles on lava flows and camped on the beach beneath coconut palms. We even got to snorkel in a coral garden that was incredibly pristine because it was ten miles from any road. I finally felt like I couldn’t be farther from being a sick person and I was so happy that my family was with me to share in my high spirits. We all say that the surgery was a miracle.

In other news, my irritable bowel disease group has been going very well. We have been growing in number and I hope that it will continue after I leave Georgetown. As I embark on an internship with the Department of State this semester, make plans for the summer, and make plans for next year, UC just seems like a short and miserable detour that will diminish in importance as the years go by.

Sunday, October 9, 2011

Inspiring story of another UC-sufferer

As you can probably guess, things are still going really well. I am much better than I was just one month ago. My cramps are much less frequent and more related to what I eat than omnipresent like they were before. I can tolerate tomato sauce more easily, so hopefully in a few months I will be back to tomato sauce feasts (one my favorite foods of all time before I got sick was puttanesca tomato sauce straight from the pot). There’s a possibility I have a hernia on my incision because there seems to be a gap in the muscle  but I have to wait for the results of a CT scan to find out with certainty. Meanwhile, I am deciding on my post-graduation plans. The ideal scenario would be to have a paid summer internship in France and then teach English in Spain for a year. We’ll see if either of those things happen, but the most important thing is that now living in France or Spain is actually an appealing option!

We had our first meeting of an IBD support group through Health Education Services this week and it was very successful. We only had five people (including me, a former roommate who had a colectomy for UC,  and a nurse from Health Education Services) but we didn’t put up many fliers and it was our first meeting, after all. Still, one student with Celiac Disease saw a flier and was brave enough to attend. It turns out her roommate has Ulcerative Colitis. I really do not know why people who suffer from digestive diseases seem to end up as roommates. I met the roommate with UC, Meredith, and she is an inspiring person who doesn’t let a terrible disease ruin her life like you might think it would.

Meredith is a junior at Georgetown and she was diagnosed with UC about eight months ago. She had a really severe case of colitis, toxic megacolon, which can be fatal. Needless to say, she was in the hospital for two months on dilaudid and almost had an emergency colectomy on a few occasions (with toxic megacolon, sometimes it’s a colectomy or death). I am sure that this was much, much worse than anything I have ever experienced. She dropped a few of her courses and finished two over the summer. She survived on picc lines and IV nutrition. When she was released from the hospital, she was on incredibly high doses of narcotics …but she finished her courses anyway. Meredith eventually responded to cylcosporine, a drug that prevents transplant rejection (an autoimmune-related issue, just like UC) Humira (shots of immunosuppressants that I took as well at one point but did not respond to), and 6-MP (a form of imuran, an immunosuppressant drug, that enabled me to come back to school the semester before I got surgery).   

Amazingly, Meredith went to Rome last summer with Georgetown’s chapel choir. Although she was very afraid and had to show her chubby prednisone face to the world, she was able to have a great time. Instead of clubbing with the other trip members, she went back to the hotel to sleep. She is now back at Georgetown and has to take oxycontin and oxycodone to make it through the day (one is fast-release and the other is slow-release). She is still taking the cancer-causing combination of Humira and 6-MP. She doesn’t eat wheat, dairy, or sugar. It is easy to discern how incredibly difficult her life is, but she still has a great attitude. She is even planning to study abroad next summer in Egypt. I don’t doubt that she could do it. I was so impressed by her courage and perseverance. So there’s a little inspiration for you.

On a slightly related note...

Tuesday, September 13, 2011

Too healthy for this sick blog nonsense

It's been almost a month since I last posted, and for good reason. I am now a normal person and I have better things to do than use the Internet for therapy. Getting back to school has been great and I am happier than ever that I got surgery. I have my work cut out for me this semester: five classes, one part-time job, one internship, copy editor at the newspaper, president of the French club, DPE (Delta Phi Epsilon Professional Sorority)...and a social life. I am also trying to get some sort of IBD support group started at Georgetown and I have an appointment next week with Health Education Services. This is the way I like it!

For most people, how I feel would not be acceptable for someone else. I have cramps pretty frequently, especially when I eat or drink anything outside of a low-fiber diet. However, I know that I will get better and I am incredibly satisfied with the outcome of surgery. It turned me into someone who was not functional to someone who was functional. When people ask me how I am doing, it's hard to explain that I feel amazing because I haven't felt this good for years but at the same time, I could feel much better.

I saw my doctor, Dr. Charabaty this week and she reassured me that I was right on track and...get this, I don't need to see her for five months! That's quite an improvement from last year at this time, when I saw my doctor once a week. When I went to see my doctor, I found out her offices had moved. I miss the old receptionists the Georgetown GI department left behind, who knew me so well I didn't even have to check in. Dr. Charabaty gave me a big hug, which is a huge deal. I actually don't think a doctor has ever hugged me before. She told me that I looked great, so great in fact, that she would put that in her notes.

Life is good for me and will only get better.