Latter-day Jane

A happy diversion of life, love and sisterly advice for Jane Austen fans everywhere. [There is no charm equal to tenderness of heart. -Jane Austen]


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I pooped my pants: the story continues

i pooped my pants: the day Merida was born

The day she was born, I would not touch her. I found it hard to even look at her. She was rather small, bright pink, a little scrunched, and angry-looking. I didn’t feel a connection – didn’t feel she was mine. I didn’t want her.

I was so wrapped up in my own pain, I begged the nurses to tend her. I just couldn’t do it. And although I did not rejoice in her, I instinctively knew that she deserved a name. So a name I gave her.

Merida.

I had seen the animated film Brave before her birth, and felt I could relate to this courageous heroine with the unruly red hair. The Princess of DunBroch stood as a reminder of strength, hope, and stalwart resolve in the face of adversity. Those were the attributes I needed – Merida needed – to move forward.

Disney/Pixar's Princess Merida

Disney/Pixar’s Princess Merida

Merida was my stoma – a section of my small intestine that had been brought out through a hole made in the right side of my abdomen, and sutured all around. There was nothing in my stomach when she first started doing her job, other than the occasional sip of water. Still, she spat droplets of yellowish clear liquid into the protective plastic bag that was stuck with adhesive putty to the skin all around her. I’m here, she wanted me to know.

I’m here, and I’m doing exactly what you need me to do.

There would be no more pooping. Rather, my waste wouldn’t come from my rectum anymore. It would come through Merida. Everything I ate would be vetted and funneled right through her, a pencil-width opening in my side.

stoma body

I hadn’t planned to have my entire large intestine removed so soon, or at all, if I could help it. I was a fighter. I had fought for three years already, and I was determined that something out there could turn this around. On any given day, they could find a cure for the debilitating Ulcerative Colitis from which I suffered.

But my options were thinning. I had tried less-invasive medications, taken both orally and by enema. I had been prescribed immunosuppressive drugs – basically an attempt to put a muzzle on my rogue soldier of an immune system. I had tried month after month of Prednisone, which turned me into a jittery beach ball of a woman who suffered from hot flashes. I had shared treatment wings with cancer patients, and as they were given their chemo, I was given infusions of a biologic drug called Remicade. I had tried Humira. I had altered my diet – several times. Obstinately, I had even tried not eating our drinking at all, which quickly got me into a dehydrated mess. Still, I didn’t want to give up.

But when one of my doctors suggested I meet with a colorectal surgeon to prepare myself for the possibility of a worst-case-scenario, I knew it was the responsible thing to do. And although I was wary as I entered the surgeon’s office a couple of weeks later, something she said reached me.

“How’s your quality of life?” she asked.

I thought about the hours spent in the bathroom, the fear of leaving home on particularly bad days, the excruciating 16 trips to the toilet each day, where, despite the diarrhea, the searing pain made me feel as though I was digesting and processing a large quantity of jagged shards, in preparation for giving birth to some kind of blown-glass-masterpiece through my anus. Sometimes, I would sit there and no stool would come out at all. Instead, I clenched my fists, my face a mess of pain, as blood rained in the toilet.

“Not great,” I admitted.

“How’s your pain?” she pressed.

I thought of the times when I curled up on the bathroom floor, trying to pick out patterns in the linoleum as though searching the skies for shapes in the clouds. I thought of the times I sat on the toilet crying, begging my body for a reprieve so I could save up strength for the next episode. I thought of hot water baths and my daily use of a heating pad, draped over my abdomen.

“On a scale of ten?” I offered. “I’m not even sure. It’s painful. Sometimes, it’s very painful. I get through it, though. I’m here.”

My explanation was weak. The surgeon gave me a look that said she had heard this speech before.

“We really have to watch out for our IBD patients,” she said, “because you acclimate yourselves to high levels of pain, and you convince yourself each new increment is your new normall. If I picked a random, healthy person and gave that person your symptoms and your pain, they wouldn’t be sitting here talking with me right now. They would be lying in bed, unable to move. More than likely, they would be in the hospital. It’s doubtful they’d be able to function much at all.”

I thought about that. Never had my pain been put in perspective in such a real way. And by the end of that appointment, I knew.

My time had come. Merida’s time was soon approaching.

{This story will continue…}

Looking for the first in the “i pooped my pants” series? Here it is. 


 Like Downton Abbey? Jane Austen? Then you’ll love Longbourn. I’m giving away an autographed copy. Enter here.

Longbourn contest promo


This is the second in a series about my struggle with autoimmune disease.

Worldwide, an estimated five million people live with Inflammatory Bowel Disease. In the United States, approximately four people out of every thousand suffer from Ulcerative Colitis or Crohn’s. Millions more suffer from other autoimmune diseases. Whether you realize it or not, you likely know someone fighting in the trenches.

For more information about IBD, visit:

The Crohn’s and Colitis Foundation of America

The Mayo Clinic

 


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I pooped my pants in Hobby Lobby

hobby lobby final

I wish I could think of a classier way to say this, but I’m not sure such a way exists.

I pooped my pants in Hobby Lobby.

Yes, actually pooped. In my pants. Inside Hobby Lobby.

And because once wasn’t enough, I repeated the offense the very same day.

As I drove to the store, the gears in my guts seemed to be happily at rest. No rusty clanking. No threats of throwing a sprocket. But something about getting out of the car and standing up caused a monumental shift in my gastrointestinal tract. The moment I walked through the doors of Hobby Lobby, I knew I was in trouble. I frantically scanned the aisles ahead, the walls — anything — for a restroom sign. I had made it only a few steps past the front registers when it happened.

I pooped.

Rather, a molten eruption of excrement-infused lava came flowing out of my diseased large intestine. Thankfully, it wasn’t enough to spill outside the legs of my underwear. (When you go to the bathroom 16 times a day, bowel movements are sometimes modest in quantity.) I took careful strides, gliding quickly towards the exit. I made it to the car, with everything contained. Then I sat down in my own waste and drove back home, with hot tears of frustration coursing down my cheeks.

After scrubbing my entire body under a hot spray of water, putting my clothes in a sudsy wash, and disinfecting the leather seats in my car, I took a few deep breaths, and started fresh. This time, I put on ladies’ protective, disposable briefs, a dignified euphemism for diaper. Despite the disposable briefs, the result was the same. I again left the store empty-handed, and drove home, defeated.

It seems funny to me now, but for a time, it wasn’t.

Maybe it’s because it’s hard talk about what comes out of our bodies. In our foodie culture, we tend to talk a lot about what goes in. We talk about the locally sourced, organic smoothies we drink and the carefully-plated dinners we consume during a night out on the town. We talk about the street vendors at farmers’ markets, the deep-fried-something-or-other at the fair — we even talk about take-out, be it bacon-topped cheeseburgers or golden-fried wontons with teriyaki-flavored fried rice. Whether the gastronomic interests lie in haute cuisine, hole-in-the-wall dives, or something in between, we take pride in what we eat. For the love of liberty, we even take photographs of our food. We show them around, text them, post them and forward them. For good or ill, this is our level of devotion.

But once the meal is finished?

Nothing. Game over.

We don’t talk about what goes on once the food disappears into the elusive black hole that leads to our intestines. Unfortunately, for people like me, that’s when the real game begins. And sometimes, it’s a dark and twisted one, not unlike J.K. Rowling’s Wizard’s Chess, a magical game in the Harry Potter series in which the players battle not for sport — but for their very lives.

This game is called Inflammatory Bowel Disease (IBD). It’s an umbrella that shelters two maniacal siblings: Ulcerative Colitis and Crohn’s Disease. They are considered chronic, lifelong, and incurable. There are flares, usually followed by periods of remission. It is a vicious cycle that repeats.

No, it’s not the same thing as eating bad sushi and running to the toilet for 12 hours straight. It’s not like the time you got the stomach flu and were in agony for a full weekend. It’s not even in the same class as Irritable Bowel Syndrome (IBS), which is admittedly inconvenient, but not a disease.

IBS_IBD-Venn-Diagrams

IBD is an autoimmune disease that attacks the body’s gastrointestinal tract, producing a wide range of symptoms that can include gut-wrenching pain, swelling and inflammation, painful ulcerations in the GI tract, rectal bleeding, anemia, fevers and extreme fatigue, strictures and obstructions — all in addition to an unpredictable cycle of diarrhea.

There are others in the autoimmune family: Lupus, Multiple Sclerosis, Rheumatoid Arthritis, Celiac, Graves, Hashimoto’s Thyroiditis, and Type I Diabetes all come to mind. These are only a few of the estimated 80 or more cousins that have places at a king-sized banquet table, all sharing the same root menu — a struggling immune system that in confusion, attacks the body.

Although our symptoms are often different, the severity of our disease covering a wide range, there’s one thing we all have in common. We are fighters. You cannot always see our scars or the determination with which we arm ourselves. The daily battles we win are often fought on the inside. But we are fighters, still. We wake up and realize through the struggle that each day is a gift.

We live.

We love.

And we laugh, if only to prevent tears.

As I look back at that day in Hobby Lobby, I can smile at the memory. It’s not because that was the pinnacle of my experience with IBD. It wasn’t. When compared with the multiple hospitalizations and surgeries I’ve experienced in the two years since, it seems nothing more than an inconvenience. No, the reason I smile is because it is part of my life experience, and I proudly claim it.

We put some of the most beautiful things on our bucket lists, because we want to look back at the end of our lives and know that ours was a life well-lived. We dream of exotic vacations with loved ones, reading classic literature, and recreating the desserts of internationally-trained pastry chefs. We dream of writing novels, attending sold-out shows on Broadway, and working a little less so that we might enjoy a little more. These are things we consider hallmarks of interesting lives.

But sometimes, the most poignant hallmarks of humanity aren’t things we think about putting on a bucket list. They are things that can’t always be planned, which makes them all the more beautiful. They are things like helping little hands catch lightning bugs on a summer evening, sharing our innermost thoughts with a friend, or helping to lighten the load of someone experiencing grief or pain. And sometimes, just sometimes, they are things like having a messy life experience right in the middle of a busy store.

My friends, I’m proud to say that I’ve added a few of these beautiful, unplanned experiences to my life’s bucket. I’m proud to say ‘I pooped my pants in Hobby Lobby’.


 

This is the first in a series about my struggle with autoimmune disease.

Worldwide, an estimated five million people live with IBD. In the United States, approximately four people out of every thousand suffer from Colitis or Crohn’s. Millions more suffer from other autoimmune diseases. Whether you realize it or not, you likely know someone fighting in the trenches.

For more information about IBD, visit:

The Crohn’s and Colitis Foundation of America

The Mayo Clinic