Tuesday, September 28, 2010

Oh Immune System, How I Miss Thee.

Does anyone else miss their immune system? Scientifically I understand why , as an IBD sufferer, I have to take immune suppressants. If I don’t, my body will continue to attack itself in the form of an inflamed colon causing blood and diarrhea and all that lovely stuff. However, sometimes I am not sure it’s the world’s best tradeoff. I get general control of flare-ups in exchange for a lifetime of weird and wacky viruses, bacteria, bugs and nearly eradicated diseases. (Okay, the last one is an exaggeration). Seriously though, my life as an immune suppressed individual hasn’t been too swell.

I think it all started when I got strep throat for the first time. I got this terribly, painful sore throat in a matter of hours. I popped Tylenol and Ricola like it was going out of style, but my throat did not get any better. Finally I went to my doctor who prescribed me some antibiotics and I was all better in no time. Goodbye strep, easy as pie.

My next somewhat lengthy and very icky experience: sinus infections. As I had gotten a few in my childhood, I wasn’t worried about these, however, getting 6 in one year was not the greatest experience. Anyway, those were the minor bumps in my communicable infections area. Soon things started to go downhill quickly.

One day I found an itchy, painful spot on my stomach that I thought to be a bite of some sort. However, one became 2 which became 5 and soon I had this line of so called bites. Finally one day I showed my mother who happens to be a nurse who said “Errrr, Lesley, I think you have shingles.” I had to google that. But I went to the doctor who confirmed my mother’s diagnosis. Things were getting interesting. Between some more strep and sinus infections I would get shingles again. I was 23 and I had had shingles twice, and had to be hospitalized because of it. My doctor literally used me as a subject to speak on at a conference. I was a medical wonder.

Miraculously I managed to avoid contracting H1N1 ( but I can honestly say my hands have never been so raw from washing and I also avoided most people like the plague). However, not be disappoint my body, I’ve made up for that absence with an array of other interesting things. I’ve had fungus infections on my head. I get reoccurring bouts of thrush in my throat. I’ve had bacterial infections in my nose. I have even had mulluscum contagiousum (which kinda sounds like a Harry Potter spell one could cast).

All in all, in my 6 years of being immuno suppressed, I’ve contracted some interesting, and somewhat gross, infections. Needless to say, when I get an especially bad strep throat, or sinus infection, or odd infection I’ve never heard of before, I really miss my immune system. Who knows, maybe the next time I’ll say “ENOUGH WITH NO IMMUNE SYSTEM”. But until then, I will continue on my weird little way, contracting whatever comes around. However, please know immune system that wherever you are, I miss you.


Friday, September 24, 2010

Knocking on Glass

For luck, we cross our fingers, knock on wood, making invisible wishes on birthday cakes. We may be hoping for a puppy, a vacation - or for a relentless disease to settle. The other day, when I was being wished luck, I was told to ‘knock on glass’ and it immediately made me think of having IBD.

Having IBD is a fragile balance of emotional hope, physical rest, and medical intervention. No matter what anyone says, we can’t wish away our illnesses or overcome them just with determination - IBD is a disease of the body, not the soul. But we still do hope, and cross our fingers that the next treatment will work, but instead, maybe we should be knocking on glass.

It still carries the gesture of luck, it’s still a physical action, but life with IBD is more glass-like than wood-like. By this I mean we have to be gentle with ourselves, if we knock too hard we might break - we have to be conscious of our bodies and cannot push ourselves past what we can actually handle.

Life isn’t fair and wishes don’t always come true. But that’s no reason to stop hoping or to stop fighting for a better tomorrow and a better treatment.

So regardless of what you’re wishing for, remember to first have faith in yourself and to never stop hoping - we are knocking on glass waiting to be answered.


Friday, September 17, 2010


If I had to choose one word to describe myself, what would it be? As much as I’d like to choose words like determined, hardworking, empathetic, etc., a part of me would feel that the most honest word to describe myself would be ‘sick.’ But who wants to be summed up by four letters that confine you to the limits of your body?

When I was first diagnosed with IBD, I half-believed that I had become transparent and that anyone on the street might be able to tell that I sick with an intestinal disease. In the classroom, I wondered who knew what was wrong and who suspected that something was different. And even though I was on the executive of student governments and excelling at school, I quickly became branded as the sick girl. I’d like to think that I helped to change the way people thought about illness; yes, I missed a significant amount of school and had funny tubes coming out of me, but I contributed greatly to the school environment and graduated at the top of my class.

And so when I decided to go to Boston University, I expected excitement and encouragement from my peers. But I shrank back to my sick persona in their eyes and they encouraged me to stick around home so when I was sick, my parents could help me out. It seemed that no matter how much I did, no matter how much accomplished, I couldn’t wash off the ink that had branded me.

Now I stand looking at myself in the mirror in my dorm at BU and I smile at the slight bulge under my shirt - the branding of my ileostomy. I try to adjust my clothes which are now too big and think about all the cookies I should be eating. The internal branding of illness I once had is now on my skin, a real tattoo of sorts to show the world. I can’t scrub it off, but I don’t want to. It doesn’t brand me as sick, it brands me as a survivor, as a fighter.

We’re all like dictionaries: the title may be one word, but there are millions in each of us. Even if my word is sick, I can still be determined, hardworking, empathetic, and a thousand other things. Our one descriptive word can change, and that is within our power. No one labels us, for we label ourselves, and just like we change our clothes, we too can change how others see us and how we see ourselves.

In other words, I may be broken, but I'm not breakable.


Friday, September 10, 2010

Grey's Therapy

Having IBD not only brings things like pain, blood loss, weight loss, medications, and hospitalizations - but it also brings things like habits and rituals. For me, during a flare-up I crave tortilla chips and jujubes, depend on my magic bag to live, and will only use Charmin toilet paper. I bring stuffed animals to the hospitals, books of Sudoku, and piles of Grey’s Anatomy DVDs. Watching Grey’s is more than just a pastime, it’s like comfort food - but so much better.

I own all of the seasons and have watched them all multiple times - plus seeing them on television when they aired. I love the characters, the wit, the cases, and the careful philosophical undertones to the show. Even though I know realistically that Dr. Meredith Grey does not exist, the characters are like friends and I glean comfort and support from watching them time and time again.

I like many of the quotes from Grey’s, and one recently struck me as a sentiment I have struggled with in the past. In the sixth season opener, Dr. Owen Hunt tells a trauma patient who is refusing her treatment that she was to ‘work’, that ‘now is the time to work’, to paraphrase him. As an IBD patient, getting similar news of having to be the one to rebuild our lives after each flare up, it can be endlessly frustrating. I often want to stomp my feet and scream, asking the doctors if they have rallied back from flares or if they think that their advice is helpful. It’s not like we asked for IBD, why should we have to be the ones to work so hard just to attempt normalcy?

Of course there is no answer to that question. The world is not a fair place and bad things happen to good people, and sometimes people who have done no harm suffer vast amounts by no fault of their own. No matter how unfortunate or cruel the world seems, it’s not going away. So sometimes we have to ‘work’ to overcome the bodies we are trapped in, but more times than not, that work is absolutely worth it.

The medical world is not a replica of Grey’s Anatomy and there aren’t happy endings at the end of every story. We don’t have soundtracks to our hospital stays and we can’t flip ahead in the script to see how things will turn out. But I continue to watch, to re-watch, to love the characters and laugh with them, because it is my Grey’s therapy.

To leave you with a memorable and frequent quote from the show, as neurosurgeon Derek Shepherd says, “it’s a beautiful day to save lives.”

And remember, each day is a beautiful day to live your life.


Sunday, September 5, 2010

The Terminologically Incorrect ‘Poop Bag’

Long before I had an ostomy bag adhered to my own abdomen, I’d heard of the mythical ‘poop bag.’ And while I didn’t understand what it meant in terms of surgery or potential permanency, I understood that somehow poop came out in a bag instead of the normal exit into a toilet. When I was about 8, a teacher at my elementary school had a son who needed the unspeakable ‘poop bag’ and the news spread like wild fire through whispers and stunned expressions. None of us knew what it really meant, but we did understand on some basic level that it would be an immense change for the boy who had to have one.

Sometimes I wonder who was the genius who sat down and came up with the GI terminology. First of all, gastroenterology does not contain an ‘i’ so GI doesn’t make a whole lot of sense. But throw in terms like ‘rectal stump’ and we’re all set - we officially have the oddest language paired with our intestinal diseases. An ostomy nurse recently informed me that my output in the bag was not poop, but instead deemed ‘effluent’. This made me laugh for two reasons - 1) it sounds like a pretty name for something gross 2) it is terminologically incorrect to say ‘poop bag’, I have an ‘effluent bag.’

This thought brought me to a larger ironic one - by the time my IBD was finally understood to be something horrible and debilitating, I had my surgery to have my ostomy to make everything sunshine and rainbows. When it was recognized for what it was, the organ was removed. Isn’t it sad that in order to get the sympathy and understanding of the severity of my illness that I had to have a five foot organ chopped out and a bag hanging off of me? It wasn’t ‘good enough’ to explain to people that I had a serious chronic intestinal disease, it wasn’t ‘good enough’ to display the medications, it wasn’t ‘good enough’ to spend all my time in hospitals - because I still looked fine, because I didn’t look any different than the next kid. Now I have the shock value - I can whip out terms like ‘loss of an organ’, ‘7 hour surgery’, ‘ileostomy bag’, ‘blood transfusion’ and on and on to get the understanding that had escaped me for so many years. And while that’s useful now, it’s ridiculous that it had to come to surgery to get that empathy. In a million ways, having an ostomy for me is much better than being ill with my IBD. I don’t want to be pitied for having an ostomy, that is not the point. But I realistically know that many people who do not understand IBD or illness will use their pity expressions when they look at me, I will be the one that they whisper about, quietly and ignorantly explaining to someone that I have a ‘poop bag.’

For all of us, IBD is something that happened to us - at least in the beginning. For me before my diagnosis, it was sudden pain and blood loss and was something I could not control. But IBD does not have to be something that continues to happen to us, at least not in terms of how we understand or relate to it. My ostomy was not something that happened to me, it was something I asked for, it was something I wanted - and is something now that I am grateful to have. While my parents fret about why I had to have IBD in the first place, my thoughts are elsewhere - they’re past the diagnosis and the years of painful treatments, because I will not let my illness be something that continues to batter me. For me, deciding to have the surgery was perhaps the first real choice I had in my IBD history and it was one I took seriously. It was the right choice for me, and it’s exciting that I made a real choice in combating the disease that had riddled my body for so long.

In the time to come, I won’t frown if someone refers to it as a ‘poop bag’, I won’t correct them into repeating ‘effluent bag’ after me. I won’t snap at the people who give me the pity look, or judge the people who only understand my medical past if I have to use the shock value terms. I won’t get annoyed when the computer highlights ostomy as a misspelled word, or get frustrated if I have to explain it to someone. And that’s all because, like it or not, IBD and it’s treatments do not have the same high profile exposure as some of the other chronic illnesses do. I can’t get upset about people not understanding if I’m not willing to be on the front lines spreading awareness. IBD sufferers deserve to be recognized long before surgery is needed, and that is something we continue to work towards.

Once the IBD vault has been opened, people find that so many people are affected by the disease. We need to swing those vault and bathroom stall doors open if we’re going to transform the understanding the public has about IBD. I know it can be done, I have seen improvements in the last few years. And swinging door by swinging door, we will be recognized and we will find a cure.