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.
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| Me in Corsica |
