It was the end of 2004. Abu was one and a half and Bean was three and a half. It was Thanksgiving and I was having to sit on pillows to keep the pain in my bottom was ripping through me and destroying any semblance of a holiday.
I hid the pain well...but I was worried.
I have Crohn's disease. An ugly, brutal disease that can wreck havoc with your life. It takes the simple things...like eating and using the potty...and turns it into something wicked and vile. I was diagnosed when I was fifteen...just a teenager. It hit me hard, fast and ripped my life apart so quickly I didn't even know what had happened until a year later when I was finally allowed to be a teenager again.
In one month, I went from finally having dance lessons...the first time in my life and something I had waited for all my life...to sleeping almost twenty four hours a day. I was stricken with a digestive tract that didn't want to digest, caused me gut wrenching pain, and made me lose so much weight I had to go on liquid supplements for months just to regain the pounds.
I was sick. Lonely. And humbled. Suddenly, my know it all attitude...just my regular, teenage moods were left behind with my sudden awareness that life is short and should be savored.
When I turned sixteen a year later...I was just happy to be alive. I hung with friends, finished my homeschooling course and graduated early. With some natural healing applications and learning to control my stress levels, I had the Crohn's under control without drugs. A damn near miracle in the world of Crohn's. And something I didn't take for granted.
Until 2004, I had very little trouble with it. An occasionally mild flare up here and there. But I didn't need medicines and I didn't have any surgeries to deal with it. Sometimes I think any new doctors I saw didn't believe me when I said I had Crohn's because I didn't have a long list of surgeries and hospital stays to prove it.
Then in 2004, I think two years of stress and nutritionally poor food caught up with me. It started in 2001 on 9/11. I was working for my Mom at her fulfillment business. People hired us to handle their orders of merchandise they sold. And business was good.
Until that fateful day. I remember holding Bean, who was almost four months old, in front of the television at work, watching and crying and never realizing that this day...this day that I write this blog...would connect with that horrible, wretched day.
What a black and dark day. There is nothing more I can say about that day to explain it. We all feel it. We all remember.
But the very next day our orders dropped. And they continued dropping as the people and the economy struggled to find firm footing again.
And the orders kept dropping until May 2002, when my Mom had to close her business.
We lost the family business. I lost my job. And Hero Hottie had to put his dreams on hold to go back to work for a measly wage that didn't support us.
We moved in with my parents after selling our house and struggled to regain our footing. But the money wasn't there and the quality of food we ate quickly went down hill. The stress of sharing a house was incredible even though I love my parents.
And then Abu decided it was the perfect time to make her appearance. And I became so sick with that pregnancy that I had to stop working, just after finding a job and trying to enter back into the workforce.
Fast forward to Thanksgiving a year and a half after Abu was born. I thought my Crohn's was doing fine. But I know the bad food caught up with me and now I was in trouble. I developed...and excuse me for being blunt...fissures on my bottom. Cracks in my skin that eventually developed into fistulas. Which are nasty, horrible things. It's where tubes form under the skin leading from one place to another. But they're not supposed to be there. Mine were from my rectum to the outside of my bottom.
Nasty, painful things that leaked with infection. Constantly. And here I was with tiny children and all I could think about was the pain.
After a few courses of antibiotics it seem like they might heal. We finally managed to buy a house and moved out. I was going to start a daycare, so I could stay home with my children, and we were on our way. Finally. After three long years.
And then...the fistulas wouldn't heal. Within hours of going off the antibiotics, they would fill up with infection and the pain would be intense. I remember one time the pain was so bad I blacked out. That's how rotten it was.
So I did what any 21st century woman does. I got on the Internet and researched. Until I found an answer.
Unfortunately my answer was surgery.
So I bullied my GI doctor for a referral, because he thought my only path to healing was taking Remicade, which has a list of side effects eleven miles long, including may cause cancer. Because I wanted to trade my fistulas for CANCER. On top of that, the instructions for taking Remicade state "Do NOT take if you have an infection of any sort...even a hang nail." That sounds severe. My entire bottom at this point is heavily infected and the doctor wants me to take what???
No, I would try my luck with a surgeon. A guy who enjoys cutting people for a living. I try to avoid people with long knives, short knives, any sort of sharp object. I don't usually volunteer to allow them to actually cut into me. But here I was, grateful to be seeing him.
He asked me to pull down my pants and underwear, bend over the table and forget the concept of modestly....and in two seconds he said the only way to deal with the fistulas was surgery.
I knew that. I read it on the Internet.
Surgery I had. It was easy and I went home in a few hours. What I didn't know was how a fistula heals. And I have to tell you...I wouldn't wish a fistula on my worse enemy. That's how hellish the healing time is. It is hell on Earth. True torture is the modern day process of healing from these bitchy things.
Let me explain but it is gross and nasty.
First, the infected tissue inside my bottom was a goner. There is no saving that. The tissue is dead, nasty and has to be scrapped away. Since I had struggled with this infection for over six months before I had the surgery the area of my bottom that had been taken over my this infected tissue was huge. Inches wide, inches long, and inches thick. The doctor had removed a good deal on my interior butt cheek.
Now, to get this empty, vast area to heal, I had to have either Hero Hottie or my Mom, take long strips of cotton gauze; about two feet of it; and slowly, methodically push it into the wound.
The butt has many, many nerve endings. It's rich in nerve endings and I could feel every single one as the cotton gauze would touch the raw, open wound into my butt cheek.
I would cry. I would scream. I would nearly black out from the pain. I would pray for strength. I would curse God for allowing this to happen. I would bite my lip until it bled. I would wonder what the hell kind of life this was.
And I would go through this whole line of thinking in the ten minutes it would take to carefully stuff my wound.
On top of this hell...it was a killer to my relationship to Hero Hottie. The embarrassment I felt having to allow my husband to clean my wound and tend to it was incredible. If we thought we had our tough times before in our relationship...this would test it like nothing else.
He didn't mind taking care of me. But it was difficult. I could not work at all. Our income was crap and now we had a mortgage. Our medical bills sucked because I didn't have insurance.
And he was working two jobs, helping with the house and kids, and tending to a wife with a serious medical condition.
He was exhausted...drained emotionally and physically... and cut off from his wife because I wasn't mentally there anymore in the relationship. How could I be? Even with massive pain killers...all I could think about was the pain. And the twice daily cleaning on my wound. I tried to be a good mother but I missed so much of them being little.
And the only thing that kept me going was Bean and Abu. Because I couldn't fail them. Even though every day seemed like a huge failure. My mood was going downhill fast. And it didn't seem like it was going to get any better.
Luckily, I couldn't see just how bleak and dark the future was about to come. I would have lost all hope than and there.
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