Remicade and Filters

Remicade (Infliximab) is a medication that should be administered with a filter on the IV line. I've been told this is to prevent molecules that are too large from entering the blood stream, since it is a biologic medication. I've been on Remicade for nearly 3 years now, and it's worked great at keeping my Ulcerative Colitis in remission. The infusion process has become routine for me, but at one of my recent infusions I noticed that something was a little different. Instead of the usual disk-like filter on my IV, this was connected to the line:

I checked with the nurse to make sure that hadn't forgotten to attach the filter, which has happened to me before. It turns out that this tag-shaped thing is also a filter! I don't know about any other Remicade users, but I had never seen this type of filter before. My filters almost always looks like a blue disk:

0.2 Micron Disc Filter - medidose.com

They have since gone back to using the blue disks, and I haven't seen a tag-shaped filter since; but it's good to know that these other filter shapes exist. So if you see something like this attached to your IV one day, no need to freak out--it is a filter too!

I do still recommend checking with the nurses on staff and always checking your IV yourself to ensure that the filter is attached. Mistakes do happen, and when I was first starting Remicade, the hospital staff DID forget to attach the filter. Luckily, my dad was alert at the time, and caught this mistake before they began the infusion. I'm not sure if there are any serious adverse side effects to receiving Remicade without a filter, however, the Remicade website specifically states that you "must use an infusion set with an in-line, sterile, non-pyrogenic, low-protein-binding filter (pore size of
1.2 µm or less)." So, as far as I'm concerned, whether or not the filter is just a precaution, it's important to make sure that a filter is attached to your line before you receive your infusion.

Just a friendly reminder to stay vigilant!

Until next time,

Hannah

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. 

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.  

Remission: Weight Gain and the Return to Normalcy

It’s been a while since my last post, and that is because I have been very busy with my fall semester of college and marathons of The Office! Thankfully, I am currently in full remission, and I was able to successfully complete the semester symptom-free. Knowing how horrible and painful ulcerative colitis can be, it is surprising now that I can experience the day as a normal person. No more having to rush to the bathroom or brace oneself for the abdominal pain and cramping—absolutely nothing. Sometimes, I think of my disease and it seems as though it happened to another person. Although the knowledge that the UC could come back is always looming, I stay optimistic. Hopefully it won’t bother me for a good long while. (Or ever, please? That would be great.)

       With remission comes the exciting process of weight-gain! Both times that the UC has flared, I have struggled with severe malnutrition and dehydration. It rapidly takes its toll, and UC can bring even the healthiest body into a state of atrophy. I am proud to say that I have gained back all the 26 lbs that I lost, and I am back at my normal weight! My lowest weight was around 91 lbs.

Before                                            After

However, it’s not as easy as just picking up where you left off and gorging on whatever you want, as outsiders often assume. At first you need to be very careful about your diet. The hospital will usually transition you from a clear liquid diet to a full liquid diet, and then to a diet of “soft foods,” but after that it’s up to you. You have to be careful about what you eat, as fibrous foods can irritate the healing lining of your intestine. Spicy foods and fried/greasy foods should also, generally, be avoided. I find that it’s best to stick with “flare foods” for a while, which are easy on your insides and typically bland. Mashed potatoes, apple sauce, and chicken (thank goodness), are some of the first foods you can reintroduce to your diet. It’s always such a relief to be free from the Jell-O, Gatorade, and soup broth diet. I have found that eggs and white breads are also a good source of food during this transition. (Bagels are your friend!) Fortunately for my taste buds, I also tolerate cheese and yogurt.

Eggs, white toast, a little butter, and Kefir to drink: a typical breakfast.

As for the vegetables, I usually take it slow and add in fiber very gradually. Cooked carrots are some of the first vegetables that I introduce back into my diet. I seem to do well with mushrooms and cooked green beans, too. Eating vegetables cooked and in small amounts is beneficial when first reintroducing fiber to one’s diet. Eventually, after eating well and taking it easy, the weight will begin to come back. Everyone has different food tolerances, and some people have to be careful of certain trigger foods even on a good day.

Unfortunately, for many the symptoms of ulcerative colitis don’t let up. Often people experience symptoms every day, even during time periods in which the disease is less severe. It is frequently a struggle for people to achieve full remission, so I consider myself lucky that my medications were able to accomplish this. 

Here's to staying that way!   

Remicade: The Infusion Experience

For a whole year I was taking a medication called Lialda, a topical, slow-release anti-inflammatory that kept me in remission up until this spring when I picked up a C. Difficile bacterial infection. The C. Diff sent me into a flare up of my Ulcerative Colitis that could not be controlled by the Lialda, and my doctors decided to put me on a stronger medication—Remicade.

Remicade (Infliximab) is my current long term treatment for my UC. Remicade is a drug that's classified as a biologic. It is a combination of mouse and human DNA that creates an antibody that targets a particular type of white blood cell—TNF-α (tumor necrosis factor alpha). Sounds like something from a sci-fi movie, right? Well, these antibodies suppress the white blood cells, which in turn suppresses the immune reaction of the body (and, in my case, the overreaction that causes UC). I was a little disappointed to have to be on an immunosuppressant medication, but it’s better than the alternative of dealing with the UC. Hopefully the Remicade will continue to keep me in remission and prevent any more flare ups. Fingers crossed!

Almost two weeks ago I had my fourth Remicade treatment, and three days ago was my first day without Prednisone since being in the hospital. Finally the long taper is over. It's been pretty strange not having to take any pills at all after a year of taking Lialda every morning and every night. Remicade is administered in the form of an infusion every six weeks. The first three doses are given closer together to build up the amount of the drug in the body. Eventually the infusions are spread out to every six to eight weeks, depending on what is determined to be best for the individual. It’s important for me to get these infusions consistently every six weeks, as inconsistency in taking the medication increases the risk of my body developing antibodies to it, rendering it ineffective.

Sleeping through a Remicade infusion.

I have to go into the local infusion center every six weeks, where nurses administer the Remicade via IV. The infusion lasts around 3 hours; the trade-off for not having to take any pills, I guess. First the nurses hook you up to an IV with a standard saline drip. Before receiving the dose of Remicade, I have to take a few “pre-medications” as a precaution. Benadryl and Tylenol are given in case I have developed antibodies in between infusions and have an allergic reaction to the Remicade. I take 25mg of Benadryl, instead of the usual 50mg because just half the amount will render me quite drowsy. I usually end up sleeping through the infusions, even though they have individual TVs for us to entertain ourselves.

The blue, disk-shaped Remicade filter.

When the nurses finally attach the Remicade to your IV, it is important that you double check that there is a filter on the line for the medication. This filter is to prevent molecules that are too large from entering the bloodstream. One of the first times I was being given the dose (in the hospital, no less) the nursing staff forgot to put the filter on. Luckily my dad caught the error before they started the drip the first time. So for those of you on Remicade, always double check that the filter is equipped!

The Remicade seems to be working so far, though it’s hard to tell since I've only been off the steroids for a few days. I've been eating some more fibrous foods as well, without experiencing any adverse side effects. Haven’t tried salads yet, but I’ll work my way up to it again. So far so good.

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.