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

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. 

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 

About Me

My name is Hannah, and I’m a twenty-year-old college student that just so happens to have Ulcerative Colitis.

And just what is Ulcerative Colitis? 

I describe it to most people as an autoimmune disease that causes ulceration and inflammation in the large intestine; a type of Inflammatory Bowel Disease (IBD) similar to Crohn’s Disease but localized in the colon. While this is an accurate description, the disease—and what those of us with IBD go through—is not so simple.

With Ulcerative Colitis, going to class, going out, meeting up with friends, eating food, and even just getting out of the house suddenly becomes complicated. It’s not just the disease that we “UC-ers” have to deal with, but also side effects from medications and being more vulnerable to certain infections. Not to mention the sheer amount of pain that the UC can cause when it’s active. Because an exact cause has not been determined and the only “cure” as of now is to surgically remove the colon, we are forced to deal with a lot of unpleasant things that can make a person’s life quite a bit more complicated.

I find that most people I talk to, if they have heard of Ulcerative Colitis at all, usually have only a vague understanding of Irritable Bowel Disease, and more often show greater recognition of the label of Crohn’s Disease. While it is easy to define Ulcerative Colitis, it remains a challenge to truly convey the magnitude of the disease; especially when your outward appearance may not reflect the chaos transpiring in your colon. 

Thus, I’ve decided to begin this blog to share my experiences with other people who have UC, as well as provide a more personal insight to people without the disease that might be curious to learn more about it. I hope to help raise awareness about IBD and, with any luck, this blog may serve as helpful to others that also suffer from this disease!