Take Steps for Crohn's and Colitis

On June 9^th, 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: http://online.ccfa.org/site/TR/2012TakeStepsWalk/Chapter-NorthernCalifornia?px=2228852&pg=personal&fr_id=3320

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

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.

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...

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.

MY HERO, Dr. Varma

Brilliant person + chubby chub cheeks = gold
Don't worry, I have two arms and Dr. Varma is not a giant.

Back to school!

It’s been too long since I updated my blog. I was busy studying for the GRE, which I hope to never see again after taking it a few days ago. When I took the test, there was a problem with my GRE computer station and it paused for 30 seconds between each question. Long story short, the test took me almost six hours! I had special accommodations with extra breaks because the surgery was recent enough that cramps can get the better of me sometimes. Luckily, all that studying (because I had nothing better to do in my convalescence than brush up on obscure words no one uses) paid off.

In other news, I had my farewell appointment with Dr. Varma today. My abscess has healed over and the scar should shrink more in the coming weeks. The area right above my scar can hurt quite a bit if I walk a long ways or bike uphill. You can feel it from the outside because it’s firmer when you poke it (a major activity around my house). Dr. Varma told me that although on the outside the scar is horizontal, on the inside there is vertical stitching, so it is not surprising that the area above my scar has internal scar tissue that hurts when I stretch the muscles underneath. It should soften over time, but for now I just take Advil. Unfortunately, the scar tissue makes exercising a little daunting. Of course, it’s really nothing compared to other things I’ve been through.

Although I’m still going to the bathroom many times a day, about 10, I’m not having as many cramps. It really depends on what I eat and the time of day. Fiber and nighttime give me cramps, so I avoid eating fiber at nighttime because I wouldn’t be able to sleep well. I definitely could be better, but I’m still in the recovery period. I am learning more about what foods are good and bad. For example, pancakes are great, but tomato sauce is bad. I still have to drink a lot of water – if I don’t, I notice because I get dizzy. It will always be that way. I will be off prednisone in a few days. As far as I can foresee, this will be the last time I am on huge tapered doses of prednisone! So if you were hoping for some chubby cheeks in the years to come, I’m sorry to disappoint you.

All in all, I’m doing so much better than I was a year or four months ago. I’m never in the kind of pain I was before, the kind of pain that dictated my life. Whereas before I had to plan my life around the bathroom, now I plan (or not really plan) the bathroom around life, which is what most people do. I can see a friend without wanting them to leave so I can be in pain in peace. I can go to the movies and not worry about not enjoying the movie on account of terrible cramps. I can eat a hamburger! 

One of the most important differences is that I don’t think about being sick anymore. I no longer have remission, flare-ups, medications, pain, and an uncertain future floating around my head. I have more normal worries: “What classes am I going to take next semester? How am I going to fit all my belongings into two suitcases when I go back to school? I should really stop procrastinating on that application essay.” Or just…“I’m tired.” I am already busy formulating plans for the years to come. It’s a relief not to worry about how I am going to pursue my aspirations because of the UC obstacle. At this point, I don’t even realize how different my life is because I’ve gotten used to it. I think I am starting to make the transition from being defined by UC and the surgery (at least that’s the way I felt I had become, even if I pretended otherwise in some situations) to just having one less organ than most other people. In a few days, I'm going back to Georgetown, where I will be the over-scheduled Georgetown student I was meant to be.