Living with a Weak Immune System

Wow, it’s been far too long since I last posted—a good sign health-wise, as usual! I've been super busy with schoolwork and a part-time job, which has consumed a lot of my free time. Despite this, I’ve been in Remission for just over a year and a half now, and now that I’ve had some more time to experience Remicade, I wanted to make a post about a few things I’ve noticed when it comes to living with a weakened immune system. Hope these pointers help for those considering going on Remicade or for anyone who’s just started and is wondering what to expect from their immune system.

1.     Being Immune-Suppressed doesn’t mean you’ll get sick more often. Seriously, all it takes is being a meticulous hand-washer and you can avoid so many colds. I know, it seems like basic hygiene, but it’s so easy to be lazy and skip washing your hands before just one meal. Colds can linger a tad bit longer when you’re immunosuppressed, but that doesn’t mean you have to get sick more often. In fact, after becoming consistent about carrying hand sanitizer and washing my hands, I’ve noticed that I catch colds even less often than I did before starting Remicade! My paranoia about getting sick left me cold-free for months. Even my own sister (who has a perfectly normal immune system) gets sick more often than I do, which I attribute my habitual hand-washing!

Handwashing infographic, courtesy sca.com

2.     Don’t skimp on sleep! This is probably the single MOST important and impactful factor that could push your immune system over the edge. You know how they say that skipping out on sleep lowers your immunity? Well, I can assure you that this is 100% true, and when you’re on Remicade, or any other immunosuppressant, you will definitely feel it the next day if you try to pull even one all-nighter. As a college student, I’ve pushed my limits occasionally, and the next day, unfailingly, I would end up with a cold. For instance, my boyfriend and I once got less than three hours of sleep the night before a trip to Disney World because we had to catch an early morning ride from a friend. I had a great time at Disney, and didn’t even feel that tired during the day. However, when I finally got to sleep that night, I woke up the next morning with a full-blown, scratchy-throat sinus cold. Even being a meticulous hand-washer can't prevent it. It just inevitably happens. A good night’s sleep is important, and you will realize this fully when you are on Remicade.

3.    Some maladies linger longer than others. Although I haven’t noticed it too much with colds, a weakened immune system will cause some things to linger. My sister and I both got a plantar wart on one of our feet after attending a yoga class with our mom. While warts are not all that concerning, they can become a major annoyance and they’re contagious. My sister’s cleared up within a number of months, but I’ve had mine for over a year and I am still at war with it! I attacked it viciously with every over-the-counter remedy I could, but the stubborn blemish remains on my foot. My dermatologist hit it with three rounds of liquid nitrogen to freeze it off, but that wasn’t enough. Finally, a few days ago I had it zapped with a laser treatment, which stung like a hot needle, so I’m hoping this will finish it off for good. Colds may not linger a whole lot longer than usual, but when it comes to something as stubborn as a wart, get it treated as fast as possible!

These are the three most significant things I've noticed about living with a weakened immune system. I'm grateful that these are the only side effects I've dealt with. Thanks to Remicade, I live a pretty normal life now. I'd be curious to know if anyone else has had similar minor side effects. Being a night owl, it was the impact of a lack of sleep that surprised me the most after starting Remicade. But if you take away anything from this post, let it be to never go barefoot in a yoga studio. You will regret it.

Until next time,

Hannah

Travel with Ulcerative Colitis: Peru

Enjoying the Incan ruins of Pisac.

Thinking about my disease isn't always something I like to do when I’m feeling well, so consider my lack of posts a good sign. However, today I want to talk about my two-week study abroad and service trip to Peru—which went perfectly well…for the most part. Luckily, my Ulcerative Colitis has remained in remission, and my travels abroad went great. I’ll share some of my travel tips and what I did to prepare for the trip medically, as well as the diet that I followed in order to minimize my chances of bacterial infection.

Preparation and Meds

Florastor, the probiotic I took before and during the trip.

I was nervous about going to Peru, especially since my first signs of UC appeared after a trip to Mexico almost three years ago. I made an appointment with my GI to get her opinion before the trip. I was prescribed both Flagyl and Cipro to take with me in case I picked up a bacterial infection, and I also brought the Prednisone that I already had in case of a flare up. My usual Remicade treatment (every 6 weeks) was administered about two weeks before the trip. When I asked if I should take a probiotic as an extra precaution, my GI told me that I could take the probiotic Florastor, as well and Curcumin, the natural anti-inflammatory derived from turmeric. I began taking both of these morning and night a few days before the trip, in order to prepare my gut for the new environment and bacteria it would be exposed to. After packing a load of hand sanitizer, tissues, and wet wipes, I was ready to go. I also brought along some Allegra for my allergies (which came in very handy—my nose was running like crazy some days because of the altitude) and some Tylenol in case of a cold. My suitcase was locked and loaded with meds—you can never be too careful.

Diet

I was warned about potential altitude sickness upon arrival in Cusco at 11,000 ft., although I never had any problems with it. For altitude sickness, my professors recommended coca tea, made from the leaves of the coca plant—the same plant that cocaine is derived from. I tried it a couple times and it didn’t have any effect on my UC at all, so I would recommend it. The dry air of the plane ride and the mountain air made my throat feel extremely dry, so I drank a huge amount of tea throughout the whole trip to help stay hydrated. After dinner with my host family, I would regularly drink 4 or 5 cups of tea. I typically drank anis (annis) and manzanilla (chamomile), which my roommate and I mistakenly believed was a clever moniker for a mixture between apple (manzana) and vanilla (vainilla) for most of the trip. We obviously have no sense of taste.

When it came to eating throughout the trip, I was a strict germophobe—I brought hand sanitizer and Wet Ones everywhere. Aside from religious hand-washing, there are some basic rules I followed when eating in Peru:

1.       DO NOT DRINK THE WATER—Bottled, boiled, or filtered water only. Seriously. Do not even brush your teeth with the tap water. Order drinks without ice, or order a bottled drink that you know is safe, like soda.

2.      Cooked vegetables only—Salads are out of the question, and if you eat any sort of raw fruit or vegetable it should be one with a thick skin and be washed in water with bleach. Peruvian diet is very carb-heavy, which was fine by me.

3.       Meats should be fully cooked—Obviously.

4.       Do NOT eat the street food—I don’t care if it smells good. Don’t even think about it. Bring snacks instead; I brought a bunch of Cliff bars and other protein bars along with me.

Really, just use common sense and be aware of what you’re eating. Other than that, I didn’t follow a special diet. The coolest thing I was able to taste was an alpaca steak, which was actually really delicious and reminded me of veal.

Food Poisoning

Guinea pig, a Peruvian delicacy known as cuy.

I believe that foodborne illness could have been avoided completely if not for the fact that this was partly a service trip. On the penultimate day of the trip, I built stoves from clay and mud in one of the local villages. Although I used gloves the entire time, this mud is full of guinea pig feces and who knows what else—really not something you want to be exposed to if you've got a weak immune system. After stripping the gloves off

after work, I used a whole package of wet wipes on my hands and arms, plus a load of hand sanitizer. There wasn't a sink available in the village, since it was quite a rural area, and we had to eat our lunch on the bus after work. I was tempted to refrain from lunch until we returned to a place where I could wash up, but I was starving so I ate just a little to hold me over. Lesson learned: nothing beats soap and water.

That night, after I went to sleep, I woke up feeling very bad—extremely hot, almost feverish, and generally uncomfortable. I tried to roll over and sleep it off, but I couldn't fall back asleep and I ended up feeling increasingly worse. I felt nauseated and went to the bathroom. I had diarrhea and was feeling lightheaded, along with that sensation that accompanies nausea where your vision goes white around the edges. I was a little worried that I was going to pass out, but after vomiting rather violently into the trash can, I felt significantly better. I thought it was over then, and was actually able to go back to sleep, but I woke up feeling awful again three more times throughout the night and in the morning. It was the same pattern; I’d feel terrible and then after throwing up I would feel exponentially better. And repeat. The vomiting stopped that next morning, but I spent most of the next two days in bed, drinking Gatorade and a “rehydration powder” mixed with water that my host family brought me. I was able to eat some soup, but really had no appetite at all. The diarrhea lasted for four or five more days, even after I started eating solid foods. While this was all very unpleasant, it—needless to say—doesn't even hold a candle to UC. It was the UC that really worried me.

To Medicate, or Not to Medicate?

I became even more nervous when I found out that I wasn't the only one to get sick that day. A friend of mine fell ill the same night, with the same symptoms down to the timing, and he tested positive for salmonella. After hearing that, I was really nervous that I had it too, but I didn't want to go to the clinic and risk exposure to other bacteria or viruses. I was scared that whatever I had ingested would set off a flare of my UC—like C. diff had in the past. My GI told me that if the diarrhea didn't go away in a few days, I could start taking the Flagyl. I really wanted to avoid antibiotics, since they’d wipe out all the beneficial gut flora along with the bad, so I decided to cautiously wait it out—and I’m glad I did. After about 5 days, my stools suddenly returned to normal and now I’m back at 100% and still in remission, no antibiotics needed! So luckily my little bout of food poisoning passed without too much trouble.

Despite the little bump in the road, my trip went really great overall and I was able to see some amazing sights. So if you have UC, don’t let your fears of a flare up stop you from travelling. Another article that I found to be helpful before my trip was this one: http://www.ihaveuc.com/traveling-and-the-scd-diet/, from a guy with UC who also went to Peru for two weeks! His story made me feel better about traveling, and I hope that sharing mine will help someone else.

Ancient Incan terraces of Moray in Peru.