My Miracle Bug

My G.I. said we wouldn't be able to conceive...
We did.

He said that I wouldn't be strong enough to carry her full term...
Bug was born via Cesarean Section at 39 weeks and 2 days.

He said that there would be deformities, developmental problems, low birth weight...
She was 8 lbs 1 oz of pure perfection.

No deformities, no developmental delays to date, none of the problems my G.I. had told us would happen.
As we prepare to celebrate her first birthday, I thank all the forces in the universe for her. She is extremely verbal - DaDa, BaBa, MaMa, Kitty, as well as an assortment of other grunts and coos. She loves to sit and be read to. She loves to "read" the books to you as well. She also displays super strength - she's powerful as my mother says. And she loves people. Laughing, smiling, and playing with anyone who is willing to laugh, smile and play with her. I have yet to meet anyone who hasn't fallen in love with her immediately!

She is 95th percentile for height and 50th percentile for weight - which I am sure will only go up with the way she eats!

So to the women out there who were told You Can't, You Won't, You Shouldn't...

It never hurts to get a second, or third, or fourth, or in our case fifth opinion.

My Miracle Bug

The Pregnancy

My OBGYN would later call our daughter - a true miracle.

We saw my OBGYN at least once a week during the first trimester. Ultrasounds almost every week. But our little Bug, my daughter's nickname, was growing and developing normally. Although monitored carefully by my doctor, things relaxed through the second and third trimesters. She recommended a C-Section.

I had stopped my meds - Cold turkey - the morning I saw those red lines.

How could I knowingly put poison into my body everyday, while simultaneously removing caffeine, hair dye, lunch meats, hot dogs, and a plethora of other things from my life?

Dr. G. was pissed. But as we walked out of his office just eight weeks into the pregnancy, his nurse said to us "It's the first of many difficult decisions you will need to make as parents."


She was worth it.

Two Little Red Lines

5am

Saturday morning

October 2, 2010

Two Little Red Lines

I cried happily in the bathroom and ran back to bed to wake up and share the news with my husband

He began to dry-heave

Despite all the odds against us, we were going to have a baby!

Healthy Babies

Surprisingly this "last ditch effort" of 6mp, Asacol, and prednisone was working. My colitis was in remission. I had been without a flare for over 6 months.

It was just some random Tuesday, my yearly visit to my gynecologist, when she asked if my husband and I were planning on starting a family. I smiled and said "No." She must have forgotten I had colitis. Then she said ten words that would change my life.

We've had women with colitis give birth to healthy babies.

I nearly exploded with questions - the meds? The side effects? Everything I had been told in the past - by four different G.I.s - was that all a lie?

She set me up with an MFM (Maternal Fetal Medicine) doctor and started me on prenatals and folic acid - nearly ten times the recommended dosage. She said that would help ensure a healthy baby.

The MFM confirmed what my OBGYN had said. Together he and I began to plan my pregnancy.

You Cannot Get Pregnant

Dr. G - yes that is my fourth G.I. for those of you counting - came highly recommended.

After some more colonoscopies, he decided we would go back to the immunosuppressants, Asacol, & prednisone.

We discussed this course of treatment in the presence of my husband. It was the first time he had ever been present for this. The doctor explained the dangers of 6-Mercaptopurine. I was familar with these warnings and the blood tests that would be conducted bi-weekly.

You cannot get pregnant.

I had already discussed this with my husband. I had been told this by doctors several times throughout my life. I felt this type of information he deserved to be aware of before we got married. At the time, it didn't matter to him. He didn't want to have children anyways, or so he said.

But it was a quiet ride home. We were traveling 45 minutes each way to see Dr. G. Finally I asked him what was bothering him. He mumbled something about babies. And I cried.

Hearing the doctor say it made it real to him. Me? I had been crying every time I saw a school bus for the last four years.

Running

Dr. Z said let's try something a little different. I had responded so well to the Remicade, why not stay with that type of treatment. He taught me how to give myself injections of Humira.

Everything was great for about nine months.

But the colitis came back again.

Dr. Z. told me that we had exhausted our options. It was time to remove the large intestine. He explained the series of surgeries I would need to undergo, the potential risks, everything I needed to know. I was 26 years old.

I left his office and never went back.

I found a new G.I. gave him a brief history and started from scratch.

Remicade

After 3 years of prednisone Dr. Z gave up and said we should try this new medicine - Remicade. It wasn't new to medicine, Rheumatoid Arthritis suffers had been using it for a few years. They had just recently started experimenting with UC patients and it looked promising.

Sure. What did I have to lose?

It worked wonders after just one infusion. Never felt better in my life. Again. Colitis gone.

Sure I had to go to the hospital every 6 weeks or so, get hooked up to an IV, and sit there for 3 hours. But it was worth it. I fell in love with my Remicade.

I even ran a marathon - that is how good I was feeling. And I didn't even have an accident doing it. That is a bigger accomplishment than the race itself.

Then the joint pain started. Lime Disease? Lupus? Nothing made sense to my primary care physician.

I figured it out before he did. During one of my infusions, I started itching. I was having an allergic reaction to my precious Remicade after nine months of glorious living. Problem was - I'm not allergic to anything else so I didn't know I was having an allergic reaction. Suddenly everything was itchy - including my throat. I was having trouble getting air in. I started coughing to try to get some oxygen into me.

Ya I'm an idiot.

Luckily one of the nurses saw what was going on, switched me to saline, injected a bunch of Benadryl into the IV and everything got immediately better. She called Dr. Z. and that was the end of my friendship with Remicade.

What Had I Done?

I got a job teaching high school right after I graduated. I was flying high. Colitis was a thing of the past. I had a great job. I had begun dating the most wonderful guy.

I actually remember saying to one of my friends that when we were younger and imagined our futures, I had never imagined it would be this perfect.

And then one morning, I saw blood. Just the faintest amount, but enough to send me into an emotional frenzy.

No. No. No. This is my perfect dream. There is no colitis in my perfect dream.


I called my new G.I., Dr. Z., who I had begun seeing just a few months earlier. I was too old to stay with my pediatric G.I. but everything had been working when I switched so he kept my treatment the same. I just needed him to refill my medications.

I began taking the meds I had been forgetting immediately, but it was too late. The symptoms just kept getting worse.

What Had I Done?

The Ignorance of Youth

The new meds worked wonderfully! College was amazing! I was eating whatever I wanted and living a normal, healthy life. I forgot the pain, the shame, that I had the disease at all. And I stopped taking the meds.

Not cold turkey, and not really on purpose I suppose. By my senior year I was forgetting to take them in the morning. I was so busy rushing to the high school where I student taught; getting up at 5:30am is a huge adjustment for a college kid!

I tried taking them at night but that fell by the wayside too.

But I was still healthy. Actually I had never felt better. It seemed that my colitis was miraculously cured and now I didn't have to deal with all the awful side effects.

The Ignorance of Youth....

Off to College

I wasn't responding to the increasing doses of Asacol, and the prednisone (a.k.a. steroid of the devil) would stop working as soon as he tried to taper my dosage. After a few more colonoscopies, Dr. L nicely told me that there was nothing more they could do for me. I had just turned seventeen.

That was unacceptable to my mother, thankfully. And she made it her mission to find me the best G.I. in the state.

So we went to a pediatric G.I. that was the best in the state. She tried me on a new (at the time) immunosuppressant, mercaptopurine (6mp). I was told that I might lose my hair, and that I couldn't have children. But those seemed a small price to pay to stop the colitis. So we did it. Bi-weekly blood tests checked my liver enzymes to make sure that the medicine wasn't pushing me into toxic levels. And slowly but surely I got better.

Off I went to college to begin my new life!

The Steroid of the Devil

I haven't been on prednisone in a while and I still cringe when I think of it or hear the word.

Most people love prednisone. It seems to fix every problem, right?

Have poison ivy? Take prednisone.
Trouble with bronchitis? Take prednisone.
Inflammation in your bowels? Here's some more prednisone!

But anyone who has been on it for an extended period of time knows that it is The Steroid of the Devil.

You don't sleep - ever - maybe 2 hours a night and usually that is in 30 minute clips. There is simply too much on your mind. Always nervous. Everything is a major catastrophe.

And when you wake up, you need to change your clothes. Why? Because you have hot sweats worse than most menopausal women.

Oh and don't get me started on the hunger - might as well order a pizza while you are awake at 3am. I went from 130lbs to 180lbs. On my 5'9" frame I like to keep things around 150. Did I mention the weight gain was in about three months?

My face was so swollen my cheeks hurt. In my driver's license photo you can just about see my eyeballs. It looks like if you stuck a pin in my face water would come gushing out.

It also eats away at your bone density, and your mind. Mood swings? HA! Like a crazy person.

I will never take prednisone again. EVER. I have since found out that I am steroid-unresponsive. It only took 3 years of bouncing around 60mg to figure that one out...

In Circles

So the meds didn't work - surprise, surprise right?

And, now as a 15-year old high school sophomore, I began the challenge of hiding my symptoms yet again. I was lying to everyone. My parents, my friends, and even my boyfriend.

I quit the basketball team.

But then on Christmas morning, as my brother, sister, and I played Mario on the new Nintendo 64 that my parents had gotten us as a gift, my secret was spilled again. I bled through my pants.

Yup. That's right. Kneeling there in front of the T.V., watching my brother master controlling a 3D Mario that could walk in circles and not just forward and backward....

"What's that on your pants?"

Oh Crap. Here we go again. In Circles.

The First of Many

My confession to my mother resulted in a trip to my pediatrician, who in turn sent us to a local gastroenterologist. He was the first of many. Dr. L (to protect his identity) began the litany of tests. Bloodwork, sigmoidoscopy, and then the colonoscopy. And that was it.

I had Ulcerative Colitis.

The doctor put me on a rather small dose of Asacol, a commonly used anti-inflammatory. The first of many meds.

Just what every 13-year-old wants, right? Something that makes them different from their peers. There was no way I was telling my friends. Not even the girl who had been my very best friend since kindergarten. The shame continued...

The Shame

The Shame of telling anyone, even my parents, motivated me to hide my disease for as long as I did.

Finally, sometime around Christmas of my eighth grade year, the truth came tumbling out.

I don't remember exactly what the straw that broke the camel's back was...probably normal 13-year-old stress. Maybe a bad grade on a science test, a poor performance in a basketball game, a boy at school hadn't return my undying affection. Who knows? Whatever it was - it resulted in me instigating a fight with my mother - the way all teenage daughters do when they are pissed off at the world.

And that was it. In the course of a five minute argument, I managed to confess my deepest, darkest, secret to my mother...There was blood in my poop.

My mother, who has become my best friend over the years, says she believes she saw signs of the disease sooner. We just didn't know what we were looking at. I hope that one day Ulcerative Colitis, Crohn's, and all their ugly sister-diseases will be discussed as openly as other illnesses that plague our society. Maybe if we had known what the symptoms were, we could have sought out help sooner. Maybe if I knew what the symptoms were, I wouldn't have hid the disease for as long as I did.

Even now, after the surgeries, people - even those I consider friends - will say "I didn't even know you were sick!" when I explain why I was just recently in the hospital.

A convincing smile. A convincing lie. That is all it takes to hide The Shame.

The Beginning

The Beginning is not easy to pinpoint.

I remember the symptoms of Ulcerative Colitis rearing their ugly heads as early as the age of eleven.

I hid these symptoms from my parents for almost two full years. The cramping, the bloating, the diarrhea, the bleeding. Sure my parents were not happy that I was "in the shower" for 30 or more minutes each morning. But I hid my disease, which was always more active in the morning, with running water and a locked door.

The weight loss, or rather my inability to gain weight, was also easy to hide. My family is tall and thin. Therefore  I was tall and thin. And I loved sports, especially playing basketball. So I hid my gaunt figure behind some baggy t-shirts, mesh shorts and a pair of high tops.

The pain and emotional turmoil? That was the easiest to hide.
Q: "Are you feeling okay?"
A: "I feel fine." 
A convincing smile. A convincing lie.