My Bag

My bathroom is well equipped with entertainment. I keep a robins-egg blue magazine rack in front of the toilet paper, a commodity I invested in after one too many hours long "bathroom stays". The magazine rack is stacked atop a pile of hastily stacked puzzle books and beauty magazines, threatening to topple over. To pull a magazine from under the rack is to play Jenga- one must be careful not to topple over a years worth of reading material. But the bag just sits nestled between Marie Claire and Crohn's Advocate inside the blue rack. Its beige tail hangs over the edge, the clip neatly in place.

The bag. My bag.

I am not an ostomate. I almost was. I almost lost my colon. My attitude has changed from "a bag of crap attached to my hip" to "something that will save my life".

Three years ago, I was suffering from my first bad flare, though I did not know I was chronically ill. I was at Barnes and Noble (as usual) browsing through books and ignoring my stomach cramps as best I could. I plucked an especially bawdy book from the shelf, just to laugh at it's ridiculousness. In it, I came across a story of a young man dating a woman who was an ostomate. I thought the young woman was courageous for showing her bag, and applauded her silently, even though I thought I'd rather die than have an ostomy.

Less than a year later, a stoma nurse came to visit me.

My surgery was due in twelve hours. My nurse came into my room. I had hated her visits before. I'd cry. I'd beg. I'd plead with her, the doctors, with anyone- please don't do this to me; I am too young to have a bag! Someone, probably fed up with my moodiness, finally told me that if I did not get the bag, I would die. As sure as I had been not even a year before, I suddenly had a will to live. So, with resignation, when my stoma nurse asked me to lift my shirt, I did. I drifted into my own world as she took a purple pen, asked me how I normally wore my pants, and made a mark where my stoma would be. She taped a clear sticker over the mark, and I was left to try and ignore the itchy adhesive on my skin. I wondered how itchy the bag would be, if i was already sensitive to the sticker. I have never handled bandages well, and the tape to hold my IV in place made me break out in a rash.

The flex sig later that night showed that the Remicade infusion had done a good enough job- I could escape surgery for now, but I was told I'd need it within ten years. Triumphant, I had my father sneak me some french fries from the hospital cafeteria, and didn't care how much it hurt. I had a colon. I took a shower as soon as I had the strength, and scrubbed my belly until the purple mark went away. All that remained was raw, pink skin.

When I got home from the hospital, I cried every time I saw the bag. To me, it was nothing more than a thing of filth. I shuddered at it, disgusted at my own body. As much as I hated it and my diseased, broken body, I realized someday it would be a very real part of my life.

So I forced myself to tolerate my bag. I kept it hidden in my treasure box at first, so that each time I rummaged through my goodies for a memory, I'd see the beige felt side of a plastic bag. Then, I placed it on my bookcase, disguised just enough that I could only see the edge. Finally, six months after my near-surgery, with a deep breath and kick to my rear end, I placed the bag in front of my bathroom reading.

I spent all last summer amazed at all the beautiful, courageous young women who posted photos of themselves in bikinis, bag, puffy tummy, and all. At first, I was flabbergasted. I was no longer disgusted, but was confused. Why would anyone want to show their bag to the world? The world is a cruel place, why would a person expose themselves like that? With time, I began to realize these women (and the occasional man) were not showing their bags just for the fun of it- they were showing their bags because those bags saved them. There is no shame in that. These brave people were raising awareness and showing the world what it means to be an ostomate. That you will be good-looking, fun, and full of life, whether you have a bag or not.

Someday, I'll stand on front of a mirror, and bite my lip anxiously before I  cautiously flash a photo of my bedazzled bag. It will be nerve wracking  but it will also be liberating. I don't think it will be easy to accept my new body part -my stoma- easily, but I know I will do it with gladness. There is nothing wrong with having a bag dangle from my never-perfect, always-scarred belly. As much as I have hated my body in the past, I live to love it now. My body will never be perfect. My body will never look like what society views as beautiful. But my body's stories are so much more interesting than a airbrushed perfection. Each scar, each stretch mark, each bruised and tender spot tells my beautiful story of survival, of not giving up.

Someday, my stoma will, too.

What I'm doing after Christmas

Clostridium difficile. Doesn't that just sound lovely? I recently got news from the doctor that my stool samples came back indeterminate for clostridium difficile, otherwise known as c diff.

C diff is a bacterium that causes many of the same symptoms as IBD.  Bring on the inflammation, diarrhea, dehydration, blood and pus in the stool, cramping, weight loss, nausea and shit fest if it means I don't have a flare, even if it feels like one. I know c diff is a nasty, disgusting bug, but at least I can get rid of a bug. I can't get rid of a incurable disease, though I'd like to.

I had an endoscopy, used a restroom, probably have been to a restaurant where employees did not properly wash their hands, and have been on antibiotics lately. All these things can give you c diff. It spreads mainly through poop (wash your hands, people!) but antibiotics can kill the good bacteria in your gut that would normally fight off c diff. My health isn't the greatest, and I'm on medications to suppress my wild child of an immune system. In other words, I am a breeding ground for clostridium difficile, as are most IBD patients. In fact, around 20% of IBD patients will get c diff.

C diff is problematic. I could get toxic megacolon (when the colon is unable to expel waste and gas and basically explodes), perforation in my colon, kidney failure, or severe dehydration... I'm not nervous though. Whatever happens, happens, and since I have an awesome GI, I doubt I'll get to that point if I do have the troublesome little bug. Besides, only 14,000 people die from c diff each year. There's how many billions of people here on Earth?

Because my results were indeterminate, I have to send another stool sample to the lab. Two days after Christmas I will take a bus to the GI, take a dump into a hat, and hand my shit to the lovely lab tech who always draws my blood, and asks me uncomfortable questions about my bowel habits. Did I mention she looks like a model? Awkward.

I'll know in the next week or two what my bowels are pulling on me this time. Hopefully nothing too bad.

Merry Christmas and Happy (late) Hanukkah! (Or whatever you celebrate.)

"Self, You are Grounded"

I sent myself into a time out for three hours today. I had had it with my bad attitude, moodiness and refusal to enjoy myself. I forced myself to spend an extra hour at my favorite store, Target, and then grounded myself for three hours from anything related to Crohn's and colitis.

I noticed my mood turning sour about a month ago. I'm not sure exactly what triggered my angst. Maybe the last two and a half years of doctor's appointments, bad labs, hospital runs, runs, and emotional roller coaster rides have finally caught up with me. Maybe it's Minnesota's particularly cloudy weather this time of year. Maybe it's freakin' Christmas. (Bah, humbug!) But I had the worst attitude, and it was more than likely connected to my IBD somehow.

I'd get up crankily every morning. Grumbling, I'd slap some makeup on my face, run to the bus stop and fake a smile at strangers. My day was spent complaining to myself about my job, then coming home and complaining to my ever-patient partner about my job, my health, and God knows what. I was angry, cranky, and sullen. If you've read my past posts, and you know me, you'll realize how depressed I am. Very depressed.

This morning, I was supposed to get an MRI. But my morning routine is so grounded in my head, that I totally forgot I couldn't have that delicious bagel I bought for breakfast. Oops. I called the doctor frantically, asking if there was any way I could still come in... Nope. My dad was going to pick me up for that appointment. It was an hour drive for him to come get me, an hour back home to change, and another hour for him to drive to work. I was upset, and felt guilty I made my dad drive three hours for nothing. I sunk deep into my self pity. It seems silly now, but this morning, my entire day was ruined because of that stupid and delicious bagel. I had to reschedule my appointment to Wednesday, and there is a chance my dad might not be able to come. (I really wanted him there. I may be an adult, but getting MRI's because you're sick is a terrifying thing.)

So, moodily, I lay on my bed like the drama queen I am and bemoaned how stupid I am to Holden via video chat. He just sat in his chair listening to me go on, and teased me gently. He told me I was silly for letting a bagel ruin my entire day. I didn't want to admit that he was right, but I knew I'd look even sillier if I disagreed with him. Yes, I was being unreasonable. Yes, it was silly. But that bagel was still stupid, dammit.

He got me thinking, though. I realized how childish I've been the last couple weeks. There was a time when I was thankful just to be able to walk to the bathroom on my own, and the last couple weeks, I've let the "what-if" fears sink their sharp teeth into my heart. I've let the grief of losing my health hover like a dark cloud over me. I wasn't allowing  myself to feel happy, and let my mood slide down the slippery slope of self-pity.

Sine I am relatively new to being diagnosed, mood and attitude is something I struggle with. I am naturally a highly emotive person. I feel deeply. I am sensitive, and a single word from a loved one can make me cry or make my entire day. I care deeply about what others think of me, and I am terrified of failure and imperfection. Having a chronic illness is hard enough... but a disease that makes me crap myself in front of others?

It's OK to feel sad. It's OK to be embarrassed. But it's not OK to wallow in it for days on end. Letting myself feel happy is struggle for me, because I am terrified of what will hit me next. I am afraid I'm going to get horrible phone calls from my GI telling me another medication isn't working anymore. I'm terrified I'll lose another friend. I am terrified my world is going to come crashing down again.

So as I thought about these things, I came up with a fantastic idea. I would ground myself for three hours from anything Crohn's and colitis related. It was awesome. I watched a movie, did my nails, made some delicious noodles for supper, decorated my laptop with some decals I found on my Target run, and just let me be me without colitis. It wasn't easy- IBD has taken such a hold on my life that I found myself thinking about new blog posts I want to write, or if anyone has posted any IBD related questions on Facebook I could help answer. But I forced myself to just sit and enjoy the movie without any distractions. As soon as the movie was done, I painted my nails so I wouldn't be tempted to log on and thus ruin my wet polish.

I feel so much happier. I feel... a little more like me. Colitis will always be a part of my life, but I need to find a way to balance my IBD life with my just-me life. Will my attitude always be perfect? No. Will there be days where all I do is curl up in bed and cry my eyes out about how shitty my life is? Yes. Am I always going  to be happy? Oh heck, no. This is a tough illness. But I can't let this disease control me. Starting today, I'm taking the control back from IBD.

"I'm Sorry"

"Sara, I'm sorry". I hate hearing those words from my doctor. It means something is horribly, horribly wrong. A good visit from the doctor sounds like "you're just fine, come back in six months for a check up", not "we're going to run some tests", "well, those labs came back fine, but there is one more test we want to try", "I'm going to refer you to Doctor X, I'm a little concerned", "we don't know exactly what is wrong yet" or my least favorite, "Sara, I'm sorry".

I take a medication called Humira to treat my ulcerative colitis. It's an injection I take twice a month to basically stop the part of my immune system that causes excessive inflammation. It's not a cure by any means, but it helps tremendously. Lately though... my terminal ileum and small bowel seem to hurt.

I had a doctor's appointment today and one of the things I wanted to discuss was actually going off my Humira, as I have been getting respiratory infections after taking my injection. He said I was doing very well, and he didn't have a problem with going that direction, however, there is a 40-50% chance I will flare when I  stop taking my injections. Then he had me lay down on the exam table and began pressing on my descending colon. No problem. Traverse colon, no problem. Ascending colon... HOLY SHIT. When he pressed on my small bowel, I actually rolled away and told him to stop. He looked at me for a moment and his expression totally changed to concern. I muttered something about failing to mention that my guts haven't been doing as well as I'd like and that the other day, I went ten times, nearly failing to make it the toilet.

He gestured for me to take a seat. "Sara, I'm sorry. But this would not be a good time for you to go off your Humira. I will be ordering a blood test, stool sample, and MRI. We need to check for inflammation. Hopefully, this is just IBS."

What I hear: "Sara, I'm sorry, but ulcerative colitis does not cause inflammation in your small bowel. Start praying you have IBS, because you might have Chron's at worse or a flare at next best."

Not a good day... I need a big bowel- sorry, bowl- of ice cream and a funny movie. Oh yeah. I can't eat icecream, or I'll be on the toilet 'til tomorrow night.

Intro

Hi!

My name is Luana and I have ulcerative pancolitis, an inflammatory bowel disease. Inflammatory bowel disease is an autoimmune disease (like lupus, rheumatoid arthritis and celiac's) that affects one in every tho hundred Americans. Basically, my immune system has mistaken my colon for a foreign invader and is attacking my guts. This causes bleeding in the digestive tract, undernourishment  dehydration, strictures (narrowing of the intestines), fistulas (abnormal connection between tissue), urgency to move one's bowels, fatigue, pain, growth problems in children, etc. Please click here to learn more about Chron's and colitis for now. I will be posting more later! :)


This is my space to talk about my disease and how it affects me, both emotionally and physically. It is also a place for family, friends, and IBD patients to connect. I hope that my readers will not only been kept up on how I am doing, but more importantly, be educated about IBD. I want to raise awareness through this blog. Even if I can make one person's life a little better, I will be satisfied.

Thank you for reading! Have a craptastic day!