I remember when I first heard of this disease.
I was sitting in my friends basement with her mom and we were drinking mass amounts of coffee and smoking cigarettes. Her mom asked for a cigarette and she said “Don’t over due it and piss off your Crohns”.
Honestly. I didn’t think about it. The name was odd, so I figure it was a weird disease that I should keep my nose out of it.
I wish I had asked.
I had been lucky. For most of my life I was healthy. Well besides the beer diet I went on as a teen in the “roaming the streets days”. I was even chubby. I was 180 after the birth of my son. Then I dropped to 140 by 19 years old. I remained there. Slightly chunky, but healthy. Then I became pregnant with my daughter. Perfect pregnancy. I never really got sick EVER, so why would I while I was pregnant. When she was born, I was 160 lbs and my only complaints were my stretch marks and the screaming infant.
I was chunky. I was. But I was HEALTHY. I remember thinking I could lose a few lbs but quite honestly? I’d rather eat the Big Mac I had just bought. So no worries.
Then it started. Pain. I thought it was the after effects of birth. Turns out it was an abscess. I found a surgeon and scheduled surgery.
(October of 2007)
The Day before my stomach decided to mimic food poisoning. I figured it was nerves.
The surgery was a success, despite the fact that the abscess had made me damn near septic. After I was released. I felt normal. I could function with out Vicodine, Morphine and Tramadol. NORMAL. For a couple days.
Then. Diarrhea. Then Stomach pain. It hurt. It got worse. I spent from June 2007-October 2007 in immense pain. I had surgery. I was pain free for DAYS. Then I had enough pain to send me to the GI. I was curled in fetal position. I was crying. Screaming. Anything for relief. After an endoscopy. I was diagnosed with Celiac Disease. Which is an intolerance to Gluten.
I went Gluten Free.
But I kept getting sicker.
By the beginning of 2008 I spent so much time in the bathroom, so much time screaming, that I doubted Celiac. I became a regular at the Local Ers. I was down to 107lbs. 107. From 160’s. I had ER doctors telling me I was:
A Drug Addict.
No one believed that I was in pain.
No one believed I was actually sick.
I missed the first year of my daughters life because I couldn’t leave the bathroom/bedroom.
My clearest memory of my daughter when she was young was her in her bouncy seat screaming for me, but I couldn’t make it the 3 feet to her from the bathtub.
Finally I made it to Highland Park ER. They told me to eat something instead of indulging my “eating disorder”. My ex husband called my step mom and she had her GI friend come talk to me. 1 cat scan later and he told me I was staying and that I had a diagnosis.
I spent a week in the hospital, many tests, IV food/PiC Line, and meds later I was released with a prescription. I started feeling better. But no where near remission.
I couldn’t gain weight. I couldn’t look healthy. I felt okay though I guess.
After a few rounds of steroids. I felt okay. I went into remission for the entire winter of 2009-2010. I gained weight. I was back at 145. I ate anything. I was NORMAL minus a few extra trips to the bathroom. I looked Human.
Then the summer of 2010 I got worse. The stomach pain started. The weight fell off of me. People started noticing. The man I was with witnessed me collapsing in Home Depot thanks to the pain. I dropped to 117.
I made it my mission to not let Crohns keep me from living my life. I was freshly divorced (separated) and I had finally restarted my passion for dancing and just discovered motorbikes in addition for my long time love of quads.
I REFUSED TO GIVE IT UP.
I would not let my disease control my life. Deprive me of quality of life.
I continued running the forest preserve. Riding with friends. Dancing. Sure I had to take more frequent breaks. But I kept on keeping on.
I tried to hide it from people. Even from my now best friend. Then I collapsed. I had to call him. He was the closest. He had to pick me off the ground. He had to help me with getting new meds from my doctor. I swallowed my pride and let him see me at my worst.
I went on to pretend that I was okay. The meds weren’t working 100% but I could keep going.
But as last winter (2010-2011) hit, it was becoming obvious that I wasn’t getting better. If not getting worse.
Friends commented on my weight loss.
Friends questioned why I lived in the bathroom.
Dates asked why I didn’t eat.
Most people didn’t know. I started coming out and explaining.
I kept getting sicker. I started facing the fact that my meds weren’t working when I developed symptoms of a fistula.
I got scared. I realized that it was getting worse.
Then it did. One night a couple weeks ago I collapsed. Then I urinated blood. Then I couldn’t stop the pain. My Best Friend told me I could either call 911 or sleep in my own blood.
For the first time in my entire life, I was scared enough to take an ambulance ride (well willingly for the first time).
I got antibiotics.
After a lot of shenanigans. My GI brought up HUMIRA and REMICADE again. After refusing these drugs since 2008, I agreed with Humira. That didn’t mean that I wanted it, I just wanted to feel better.
Then last Thursday. St. Patty’s. I had a standing date to go dancing with a TON of people.
I couldn’t. I didn’t even make it through one track. I got tired and dizzy. I sat by the wall. I gave up after having to have a bouncer make a path so I could get outside.
Crohns had finally taken dancing away from me.
The one thing I love to do.
I have finally recognized my need for Humira. I have finally accepted that this disease is not going to go away.
I am sick.
But hopefully with this drug I can take my life back. I can be me again. I can eat again. I can dance again. I can run in the preserve again. I can live painfree.
I have high hopes. But it’s this or surgery so here I go.
My hopes of this blog is to bring around awareness. Crohns and UC are devastating diseases. Worse than the symptoms is the decline of quality of life. People with active disease often fight to avoid losing themselves. They fight depression and anxiety. They fight every single day. Patients much worse off than I am.
They need to be SEEN.
All I want is for people to be more aware of IBD. I want every day people to KNOW about all the people suffering.
Everyone knows Breast Cancer.
I want everyone to know CROHNS AND UC.
Please link and pass around.
UPDATE TIME KIDS
Humira seemed like a wonder drug for me. I did my first loading doses the week before my birthday (the last week of March) and by my birthday (April 5th), I felt almost normal. The fatigue was still there but the fistula symptoms had disappeared. I was ecstatic. Finally, I could live my life!
I did my other loading doses and continued feeling relatively well. However, the fistula started getting worse after those loading doses. The fistula is from my Intestines to my Bladder, so you can imagine the gross symptoms as well as the pain. I started back on the antibiotics and went from there. I developed the fistula the previous fall, so it was coming up on a year.
Slowly but surely my other symptoms and some new ones popped up. I was still determined to break free and I just KNEW that the Humira was working. KNEW IT. The drug couldn’t fail me. I finally felt normal-ish.
My weight started dropping but I was attributing that to my running again.
Then one day, I got up for work, and couldn’t go to the bathroom. I felt super nauseous, well, more than normal. I decided it was just a bad Crohns day and headed into work. Sitting at my desk the pain got worse and I realized my stomach was bloated. Like 5 months pregnant bloated.
I called my GI doctor. He listened to my symptoms and took a deep breath.
“Sarah, I know you hate the hospital, but I believe you have an obstruction. You need to find a ride here or I will call you an ambulance.”
In typical Sarah fashion I grumbled and hung up.
I didn’t want to take an ambulance… so I called around. Nothing. My boss ended up driving me (what a god send). I walked into the hospital damn near horizontal, but I was convinced I was fine.
My entire Colon was collapsed. The Fistula had caused so much swelling that nothing could get through, no air, no nothing. My doctors decided to take down the swelling with meds so I could fortunately avoid surgery. For the moment.
I still couldn’t understand how I was obstructed. Besides the pain, there wasn’t much symptoms. My brain denied it. That is until the constant vomiting started later that night.
It took me a week to get out of the hospital, and that was with me constantly bugging the staff, my gi, and threatening to go down the stairs that were next to my room.
After I left I met with my GI. We talked. We talked some more. Or rather, he talked, I grunted and avoided him. He left my voicemails, I avoided him. I took my prescribed prednisone and avoided him some more.
The joint pain started. My face swelled. I gained water weight. My body was on fire.
I called my GI back.
After much talk, I decided on Remicade.
After the first infusion, and my 3rd round of antibiotics, the fistula symptoms increased. My doctor explained to me that my body had built up antibodies to the Humira rather quickly, which is why it stopped working, and he was scared that it would do the same for Remicade. I started 6mp to kind of back up the Remicade and to hopefully heal the fistula.
My last GI appointment. He informed me I’m unlucky as in I get all the drug side effects. I showed him how my hair was falling out. I also told him how as soon as my 4th run on antibiotics, my fistula symptoms came back. The rest of my Crohns was fine though.
As of right now I’m back on antibiotics again, we upped the 6mp, and I’m still on remicade.
I have to get a cat scan to see how bad the fistula/inflammation is, if it’s really bad I’ll be scheduling surgery, if not we’ll wait it out until the holidays are over. If it hasn’t healed by then we’ll be talking surgery.
Congress has passed a bill declaring December 1st – 7th Crohns and Colitis awareness week. We finally have gotten our own week.
I just hope that people pay attention, recognize this disease, and don’t respond with “Oh, you have a tummy ache?” Because this stupid tummy ache will be getting me my surgery relatively soon.