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. 

Self-Esteem and IBD

When you have Inflammatory Bowel Disease, you’re forced to deal with a lot of crap—literally and figuratively. Not only are people affected by disease symptoms, but the side effects of certain treatments. The ulceration in your colon might not visible to others, but side effects often do have physical manifestations. Sometimes your self-esteem can take a hit when struggling with side effects like weight loss, weight gain, facial swelling, and acne.

Edema

Dehydration and malnutrition often cause rapid weight loss during a flare. It’s hard enough to keep things down (and keep them in), and when you’re running to the bathroom fifteen to twenty (or more) times a day, fluid and nutrition is easily lost. An IV is the best remedy for dehydration, but, if the body also lacks protein, edema can occur. Edema is the phenomenon of swelling due to fluid retention. So after a drastic drop in your weight, you could find yourself swelling up like a balloon.

Photo via Keck Medicine at the University of Southern California

   

The edema is harder on the body than you’d imagine. When you’re lying in a hospital bed all day with little to no energy, your muscles will dwindle. This makes the swelling feel a lot heavier, making it that much more difficult to get out of bed. It can even cause back pain due to the pressure the swelling causes. I felt like lopsided water-balloon animal; my forearms were larger than my upper arms, and my feet and ankles were puffy. It was a strange sight.

Weight loss

Without an IV, the fluid weight is usually lost within a couple weeks. However, this will bring you back to the equally unpleasant state of being underweight, which is not glamorous in the slightest. I try to gain weight as quickly as possible, but it’s a slow process. It takes me months to get back to my normal weight, and the transition period can be awkward and uncomfortable. I’ve felt discouraged from going out anywhere—even when I do have the energy—because I don’t want to be seen in my withered state. I basically looked like Sirius Black after escaping Azkaban, but not as cool as Gary Oldman.

Moon Face and Acne Rash

On top of the weight fluctuation, the standard treatment to get a flare back under control involves the use of steroids, which come with a load of side effects. As I mentioned in a previous post, a common side-effect of the steroid Prednisone is facial acne, which won’t go away until you’re off the medicine completely. I despise the acne rash, and covering it up with make-up is tedious and only somewhat effective. I imagine most men with prednisone acne probably won’t be slathering cover-up on their face, which leaves them with even fewer options to cope. Along with the red bumps that appear all over the forehead, cheeks, chin, and chest, Prednisone will also cause facial swelling. Some people deal with a rather severe “moon-face.” For me, the swelling is minimal, but definitely noticeable.

Moon Face vs. Normal Face

Yep, that is me on the left, not a chipmunk. As you can see, Prednisone can really make your cheeks puff up. 

All of these side effects can make it difficult for a person to feel confident and happy about themselves, which is important during the recovery process. You don’t feel like going out, but too much reclusiveness can be detrimental as well. If you get hung up on the temporary state of your body, you just make the recovery process even harder for yourself. Even if I don’t feel back at 100%, I try to remind myself that in time I’ll be in a better place, physically and mentally.

TIPS:

• One thing that helps boost my self-esteem during the recovery process is exercise. Go for a walk, run, or just lift some weights at home—you will start to build back your muscles and feel better in general. 
• If you are insecure about being underweight, wear loose clothing. Baggy clothes will make things less noticeable, and odds are strangers probably won’t take any notice anyway—it’s only a big deal to you.
•  Most importantly, do something that makes you happy! Draw, write, play games, or watch some movies—not everything has to be exertional if you are low on energy.

Changes in your appearance always seem more drastic to you because you’re more familiar with your body than anyone else. Sometimes it’s best not to care. You don’t need the stress.

I hope all the other UC warriors out there feel better and stay happy.  

Ahh, Prednisone.

Prednisone. 

The word elicits mixed emotions for those of us with Inflammatory Bowel Disease. We never want to take Prednisone, but often times this steroid is the only thing that will get our symptoms under control during a bad flare.

Prednisone is an anti-inflammatory corticosteroid and an immunosuppressant. However, it comes at the cost of a long list of other side effects, and the longer you’re on it the longer that list becomes. Due to this fact, prednisone is used as only a temporary solution and doctors will want you to taper off of it as soon as you can. As annoying as the side effects may be, you can’t just quit taking it because your body adjusts to the presence of the drug. It gives your adrenal glands a break, and they go into a kind of hibernation mode. You need to slowly take smaller doses of Prednisone to allow your glands to become used to producing cortisol on their own again, otherwise you could experience adrenal failure—and you really don’t want that.

For me, prednisone has been very effective in getting my symptoms back under control, but some of its side effects can be quite frustrating. For one, there’s the dreaded prednisone “moon-face.” The drug can cause weight gain and abnormal weight distribution, which can result in puffy, round, chipmunk cheeks. Luckily, my moon face isn’t very severe and not too noticeable, but for some people it can look as though their wisdom teeth were just removed. Although it’s never been that bad, I have noticed a slight puffiness in my face in old photos from when I was on higher doses of prednisone. Even more bothersome than the cheeky face is when the weight that I gain gathers in my stomach area, giving me a puffy, bloated look. How flattering.

I’ve also noticed that I get irritable more easily when on high doses of prednisone (40mg and up). I’ll sometimes feel angry, sad, or moody sometimes, for no real reason. It really does a number on your hormones. I also tend to sweat more frequently and randomly when I’m taking prednisone. I wouldn’t describe them as hot flashes exactly, but the sweatiness will strike at indiscriminate moments. This is rather unhelpful when you’re trying to recover from being sick, but I will choose being moody and sweaty over being in pain any day.  

But the most frustrating side effect by far that I must endure is the prednisone acne rash. I’ll get a bunch of little acne bumps all over my forehead, chin, neck, chest, and even my back when I take high doses of prednisone. It’s not just normal acne either—it actually feels painful when you touch it or accidentally scratch it. The best part is it won’t go away until you are off the medication. Acne-treating face wash will only do so much. I despise prednisone acne. It’s like the cherry on top of my sundae of health problems.  

Some of the other side effects are a little easier to deal with. I’ve experienced increased appetite—which is helpful when you need to gain weight back, mild joint stiffness, mild muscle soreness, and the occasional headache. Oh, the joys of prednisone.

In all honesty, though, this medication has been the one thing that I can count on to get my Ulcerative Colitis flares under control and allow my intestines to heal. As irritating as the side effects can be, I feel a hundred times better when I’m on prednisone; and that’s what I remind myself of when the side effects are bothering me. It’s so much better than being in a flare. 

My Story: Diagnosis

This is the story of how I found out that I had Ulcerative Colitis. An estimated 1.4 million people in the United States alone share a similar story. So why haven’t more people heard of Inflammatory Bowel Disease? Well, it’s not always easy to talk about problems that are so closely tied to the toilet. It can be an awkward topic to broach. However, I believe it’s important to share your experiences with others. People don’t always realize how much we UC-ers deal with, and spreading awareness about it is the first step towards finding a cure!

Ulcerative Colitis can be tricky to diagnose, especially at its onset when symptoms can be pretty mild. Like others who suffer from IBD, it was only after a multitude doctors’ appointments and misdiagnoses that I finally figured out that I had UC. Unfortunately, things went extremely downhill and I missed nearly half of my freshman year of college before I finally got the right diagnosis! I can only imagine the pain that I could have saved myself from experiencing had I known what I know now about Ulcerative Colitis. I hope that my story is helpful to people with UC or others who may be experiencing similar symptoms.

How it all began…

It all started the summer before my freshman year of college. I had just returned to the U.S. from a 6-week study abroad program in Mexico. One week later, symptoms emerged. Blood mixed with mucus was suddenly appearing in what were otherwise completely normal, solid stools. The mucus looked like whitish clumps that were kind of mixed/tinged with pinkish red. This definitely freaked me out a bit, but I brushed it off as just my system “re-regulating” after returning from Mexico. I ignored the symptoms at first, hoping everything would resolve on its own. Not to mention, these kinds of symptoms can be uncomfortable to talk about. Well, I want to tell you that this is NOT something anyone should feel embarrassed to talk about. It is a legitimate medical concern. Whatever the cause of the blood in your stool, the presence of blood is NEVER normal. It should not be there. Go to a doctor as soon as you see blood, whatever the reason.

Of course, the symptoms persisted. When I realized that it was not going to just go away on its own, I went to the infirmary on campus. They took a blood sample, which only revealed slight anemia. They suspected an anal fissure or hemorrhoids, but found none. I was referred to a Gastroenterologist.

I explained my symptoms—just the mucus and the blood in the stool, which was otherwise entirely ordinary. I also felt perfectly fine. I had no trouble going to classes or doing anything. I wasn’t experiencing any pain; the blood was just there. The GI thought that I looked “too healthy” for it to be IBD, and he suggested I get a sigmoidoscopy (a partial colonoscopy). My parents and I thought that this was pretty drastic and decided against it. Furthermore, I had become convinced that I had picked up a parasite while in Mexico. My symptoms presented themselves exactly as they would with an Entamoeba histolytica infection—otherwise known as amoebiasis.

Parasite?

Over winter break, I saw an infectious disease specialist who also thought that amoebiasis was the most likely culprit. He ordered stool samples to test for a multitude of parasites, including amoebiasis. All the tests came back negative. However, amoebiasis is often difficult to detect, and false negatives are not uncommon. In fact, I was told that it is often treated on clinical presentation alone in other countries. He prescribed me the medications for it (Tindamax and Paromomycin), and I began taking them shortly after returning to school.

After beginning the anti-parasitic medication, things began to get worse. I began experiencing diarrhea and increased urgency and frequency. These types of medications wipe out not just the parasites, but a lot of good bacteria as well. This bacterial imbalance likely aggravated the UC. I began to have discomfort and cramping every time I had the urge to use the bathroom. Within a few days, I was not able to leave my dorm room, and I found myself rushing to the bathroom frequently. I came down with a persistent fever, which I took Tylenol for. I felt awful, and I had my mom pick me up and drive me home. We went to the infectious disease specialist, who could see that I was noticeably more sickly looking. He had me send in another stool sample, which came back positive for the presence of the H. Pylori bacterium, which have been implicated in the cause of stomach ulcers. The specialist thought that perhaps the H. Pylori was complicating things, or that perhaps that was the cause of the symptoms all along. I was prescribed three different antibiotics in order to eliminate the H. Pylori.

More Antibiotics Troubles…

Whether or not the presence of this bacterium was causing me any problems, the antibiotic regimen certainly did. My health declined rapidly. I spent two weeks lying on the couch, only getting up to run to the bathroom or to go to my bed for the night. I had no energy to do anything and was in a huge amount of discomfort. I had no appetite, either. Everything I tried to eat would go right through me and I was losing weight. Bowel movements had become increasingly bloody and painful. I had intestinal cramps that were so severe and agonizing that it made me nauseated. My temperature would also spike to a fever right before a bowel movement. It would usually go down afterward, but the pain itself was exhausting. I was using the bathroom at least twenty times a day, at that point. It was miserable, and the whole two weeks blur together in my memory. I should have gone to the ER much sooner, as they were easily the worst two weeks of my entire life.

When I finally went to the hospital, I was severely dehydrated and malnourished. They inserted an IV and a PICC Line. I was put on Total Parenteral Nutrition (TPN) and ended up having two blood transfusions. A colonoscopy was performed, and I was finally diagnosed with Ulcerative Colitis. The inflammation was throughout my entire colon (pancolitis), and it was very severe. Atypically for UC, the rectum was not the most severely affected, although it was still inflamed. I was put on IV steroids, which worked to bring down the inflammation and allow the colon to heal. I began to slowly feel better, and symptoms gradually improved over my nine days spent in the hospital.

There were some complications, however, due to the malnutrition. The lack of protein my body caused a phenomenon called edema, or fluid retention, after I was put on the IV. So on top of the UC and my physical weakness, my arms and legs swelled up like balloons. This made them heavier and made it more awkward and uncomfortable to get out of bed. It was an odd sight, but at least I was finally getting better. I transitioned from TPN to clear liquids, and finally to solid foods again (hallelujah!).

Recovery

When I was discharged from the hospital, I was kept on Prednisone and my symptoms improved fairly quickly. I hit a bit of a speed-bump when I contracted a C. Difficile infection that landed me back in the hospital for four more days. After it was treated and cleared up, I was on the road to remission. It was a slow, but steady recovery. I had to gain back all the weight that I had lost (nearly 20 lbs), as well as get back in shape and rebuild my muscles. I started on Lialda as a long-term medication and tapered off of the Prednisone. I was in full remission for a year. I did not have any problems and was able to work back to eating pretty much anything I wanted. I still avoid spicy foods and excessively greasy foods, but I think my health is all the better for it.

I sometimes wonder if they would have been able to diagnose me with UC back then if I had agreed to do the sigmoidoscopy early on. If I had to make that choice again, I would choose to go through with the procedure. My advice to anyone debating having a colonoscopy or sigmoidoscopy is that they should go ahead and do it. It might have saved me a whole lot of pain.

Another thing I’ve learned from my experience is to go to the hospital EARLY. Don’t let things get worse! The dehydration and malnutrition not only made me feel worse, but it interferes with the body’s ability to recover from the UC! You should go to the ER sooner rather than later. I regret not going sooner and I can’t emphasize this enough.

For any other UC-ers out there—did you have a similar experience in getting diagnosed? How long did it take you to get the right diagnosis? I’d love to hear from people about their experiences. Did anyone else’s symptoms begin after traveling to another country? I know a couple of other people for whom that is the case, so I’m curious if there’s anyone else out there with a similar story!

Please feel free to comment or contact me via email at thecomplicatedcolon@gmail.com!

Until next time,

Hannah