Tuesday, March 13, 2012

Part deux

I was really sick this time. I was losing weight fast. First 2 lbs, 5 lbs, 10 lbs, 20 lbs until I was at 114-116. I am 5' 7". That is not healthy. The red demon was back visiting and along with him he brought his friend diarrhea. What a party! I was exhausted. Weak. Just plain tired, but I wouldn't let this get me. I had PLANS for this year. I was in the musical at school. We were doing Crazy For You. I was LOVING it. I was up at 5:30-6 every morning for rehearsals for choir. We would be singing in the halls before the musical. Being in Jazz Choir, we were required to be there and perform. Several of us in the choir were also in the musical. Rehearsals were everyday after school until about 7-8 at night. It just depended on the day. Well obviously, we needed to eat dinner at some point. So most of us would take a break when the leads were rehearsing and run to get some food nearby or hit the vending machines. Chips, pretzels, candy.. all that fun stuff. So you can imagine what this was doing to my poor digestive system. I lost weight. I had to get my vest for my costume taken in because I was getting smaller everywhere. I was pushing through. Trying not to let this get the best of me. I tried napping in the auditorium seats. I even skipped a class or two to just rest. Finally though... enough was enough.

My mom called Dr. Mizell. This time though... He wanted to admit me to Primary Children's Medical Center. My Dad called the musical director, who was not very happy that I was in the hospital but agreed to hold my spot for me. There would be a few numbers that I would either have to learn or just sit out of. It was all I could think of. I just wanted to be normal. Back on the stage with my friends. I was freaking out. I'd never spent more than 2 nights in a hospital. My mom was visibly worried but was trying to stay calm. My hematocrit level was really low. I wasn't holding liquids down as fast as they were leaving. Again...the red demon was lingering. I had IV meds (steroids), fluids, several blood tests, scans, exams, samples etc etc etc etc. I felt like the human pin cushion. I WAS the human pincushion. I spent the next 5 days there being poked and prodded. I just wanted out of this sterile nasty hospital and back to my own bed away from the tubes and machines. Thankfully things turned a corner and I was able to go home. I felt better, but not right. I kept my weight at about the same number but really struggled with my hematocrit level and fatigue for the next few months. Another flare happened, more medicine. Then it was my senior year before I knew it. It started out fine. I had friends, I had made it into Madrigals (the choir most seniors were in), I was on track to graduate. Things were good. And then they weren't. AGAIN. I auditioned for Bye, Bye, Birdie that year. I was in the chorus. I was happy. Then I started to have that same old feeling. This time though...it was THE WORST it had ever been.

This is where things get a little bit vague and fuzzy for me. I realize now that I was running on nothing. My hematocrit (blood level) was shockingly low. The average is 36-45. I was at 21. Then 19. Then even lower. I could barely move. I didn't want to eat. I just wanted to sleep. I stayed on the couch, I missed a lot of class, and my job as well. Finally, my parents called Dr. Mizell. I was admitted to PCMC AGAIN -____-

This time though things were bad. Like...horribly awful.

I was put on TPN, total parental nutrition through a nasogastric tube. That was some fun times...

I kept blowing IV's, 12 in 4 days, so the pic line team came and put a central line in my right arm. It was nice to not get poked for blood anymore. They just took it from the pic line. I was on a clear liquid diet. I was on steroids, pain meds, anti diarrheal's, and put on quarantine. I couldn't leave my room until they figured out what was plaguing me. I lost weight again. This time landing around 100 lbs. The Bleeding wouldn't stop. Nothing was working. I just wanted to die. I had been at the hospital for over 2.5 weeks. I was SOOOOO over it.

Dr. Mizell wanted to perform a colonoscopy to see what was going on in my intestines. He also wanted an endoscopy done of my throat and stomach. He did the test and my images came back looking like ground beef. Straight up actively bleeding hamburger intestines. That's what I had.

The kicker? My esophagus was being eaten away at the bottom from all the reflux coming up. He wanted to do a last ditch effort. He wanted to try a "new" drug, in fact I was the first person in Utah to receive it in 2001. It was called Remicade. It's widely used now, but back then it was cutting edge. We tried it for 3 days...nothing changed. Then the decision was made. The one that really altered and scarred me, literally and emotionally, for the rest of my life.

Thursday, March 8, 2012

My story pt. 1

This is probably going to be an extremely lengthy conversation. I'd prefer to give the cliff notes version, but like I said...I think I need to get it ALL on paper.

DISCLAIMER: some of this might be a little TMI or graphic but please understand that this is real. This is me. This is what I've been through. This is MY BLOG, my safe place.

Once upon a time...
Jk jk jk

So this all began back in 1997. I was 13. I was basically an only child at the time. My older siblings were all out of the house for one reason or another. Marriage, kids, and My brothers were both on missions for the LDS church at the time, one in Brazil, one in Ireland. Life was just normal for me. I was in middle school. I had friends. I had church. I had sports and music. My parents both worked full time so I was a latch-key kid most days. My parents also traveled a lot for work. Over the summer I would go with them on trips since I didn't have school and they didn't want to leave me home alone all the time. I was traveling with my Dad at the time that my symptoms first started. I honestly thought I had food poisoning. We were somewhere in St. George, UT or Nevada... I can't remember. I had a roast beef sandwich. Odd that I can remember that meal but couldn't tell you where I was. This is when I started to really notice what was going in and out of my body. I just started to feel really bad stomach cramps about an hour or so after dinner. Then that urgency to GO. You know what I am talking about here.  So I spent most of the night in the bathroom. I felt like complete and utter crap for the next few days. I couldn't really shake it.

(Mind you... all of this has become quite a bit of a blur to me. It has been 15 years. I was going through a lot physically that was absolutely exhausting. Maybe I will have my mom come and fill in the blanks for me here...)

I was with my Dad for a few more days and then we went home. We were heading to Ireland shortly after this trip to pick up my brother from his mission. We were going to Ireland, England, and Scotland for 28 days.  I was very excited. I had never been out of the country, let alone SEVERAL countries. Plus, my brother And I got along a lot quite well, I had missed him. We flew into Cincinnati, then Newark, then Zurich, Switzerland, then London, THEN Dublin.  It was a LONG LONG LONG travel.  I was tired. I was run down. I couldn't shake this tired feeling. I thought... "man this must be jet lag"  Then... I was in the airport bathroom in Zurich the first time it happened....


Bright. FREAKING. Red. Scary. BLOOD. I just remember thinking "I'm too young to have my period already.. only ONE of my friends has had their period. I CAN'T be having my period. Wouldn't I know... what am I going to tell my Mom and Dad? No... I can't tell my Mom and Dad..wait..."
That's when I realized...wait Jana, that's NOT your period. That was blood from your stool.  Then the panic really set in. I just thought maybe I ate something bad. I didn't know anyone who had ever had blood in their stool, let alone someone who would TALK about blood in their stool. I mean, who has BLOOD in their stool? Apparently I do. Me... Jana... 13 years old... has BLOOD in my stool. I suddenly felt really tired.

I continued to just act like nothing was wrong. I told my mom I was just TIRED. I mean I was... I was REALLY tired. We got to Ireland. I had gone to the bathroom several times since that first initial blood moment.  There was more blood.  Still.. too scared to say anything.  We went and picked up my brother. We spent several days traveling the country side. I slept. Literally.... I think I missed about 75% of this trip. I didn't feel hungry. I felt nauseated all the time. I thought I had a stomach bug or something. Still.. more and more blood. Sometimes that was all that would come out. No stool. Just the red.... the bright red.

Now, like I said this was a LONG time ago for me and I was really just out of it. I remember bits and pieces of this trip. I remember freaking out several times, what were probably thought to be teenage moments, were actually my body just having ENOUGH.  I can't remember how it happened.. Mom needs to post a post on here I think... but she found out. I remember the worried look on her face. We were still traveling when it happened. At least I THINK we were. All I wanted to do was sleep. I really couldn't care less about this castle or that place to eat, these people my brother wanted us to meet, where we were staying, changing of the guard, WHATEVER...  I just wanted to sleep.  I wanted my OWN bed.

When we got home my mom made an appointment with my pediatrician. I don't know how fast that happened, but I am sure it was pretty quickly after we got home. He referred me to a pediatric gastroenterologist.... Dr. Janet Harnsberger.  I remember being really nervous, but also relieved that someone might know what was going on with me...

I was not ready for what was coming our way.  But really, what 13 year old is ready for this:


SAY WHAT?? What the Hell is Proctitis?? 

Dr: Try some Flagyl and if it doesn't clear up we will schedule you for a sigmoidoscopy.  

WTF is a sigmoidoscopy?? They are going to stick WHAT up WHERE? No... no no NO!! This is NOT happening. This is NOT happening to ME. I'm good I swear... just a little bleeding... I can handle that... 

RIGHT.  I so could NOT handle this.

It didn't get any better. As much as I willed it and prayed for it to get better with this medicine. It didn't.  So I had that lovely sigmoidoscopy (The first of many to come in my life). The doctor found inflammation and bleeding. She officially diagnosed me with Acute Ulcerative Colitis.  Sent me home with enemas... ENEMAS. Seriously? What am I? 80?? old people have bowel issues... not 13 year olds! 

Ulcerative Colitis... 

2 weeks later... another appointment. No change. Still sick. Still passing bloody stools. MORE diarrhea.. MORE blood. This enema crap was for the birds.  I was DONE.  This is about the point where I was getting more angry and confused than better.

Then she puts me on a drug called Prednisone. Anyone ever heard of this lovely gem? Yeah... I hope you NEVER have to experience the loveliness of Prednisone.  Face swelling, mood swings, sweats, heart palpitations, dizziness, irritatbility, crying, shaking, weight gain.  What 13 year old wants to gain weight... and have a fat face.  Not this one! My mom had me stop taking it because she came to check on me in bed only to find that she could LITERALLY hear my heart pounding. I guess I am what you would call "intolerant" to prednisone.  You can't technically be allergic to it since it is a replication of something your body already produces. I was told to put that as an allergy though so I didn't end up having a heart attack or stroke.  The only good thing about this lovely steroid... it made everything stop. No more blood. YAY!! I can go normal again!

So we schedule a follow up appointment in 2-3 months.  Everything was okay.. and then it wasn't again. I got back on some enemas *shudders* and some Cipro.

Another bad flare... only this time I met a new doctor in the practice, Dr. Louis Mizell.  I really liked him. In fact, to date he is my favorite doctor I have EVER had. I got put BACK on prednisone, but only half the dose this time, since it seemed to help squelch the symptoms and bleeding. It sort of helped, but in the end we tried several medications and we figured out a few that worked for a while, prednisone reared it's ugly head again and sent my heart into crazy rhythms. This time I was told to avoid pizza, pretzels, potato chips, pretty much ANYTHING salty or Fatty. No fried foods.. just bland simple foods.   
What?? Are you serious?? I am a teenager this is our STAPLE. Pizza Parties?? Fast Food...*sigh* I guess mashed potatoes will be my BFF from here on out. 

The next 2 years were pretty normal. I had a few flares here and there. Easily treated with a diet change and medication. I turned 15, and then 16. I got my license. I was in Choir in high school. I was loving it. I had lots of friends that I did things with. I was active in my church. I had several crushes that year... yes SEVERAL. What teenage girl doesn't? I went on a few dates here and there. Then I had another little bout of inflammation/bleeding.  More meds...

Then it happened.  The course of events that really... changed the game.  Why? Seriously... I just wanted to live life and enjoy my teenage years. I want to worry about whether so and so likes me, or who is taking who to the prom, not whether or not I am going to have blood in my stool when I go to the bathroom. 

Forget this crap.  I just want to LIVE my life...

Wednesday, March 7, 2012

Welcome! Hello blogging world!

Hello to any and all of you who will actually read this. I am starting this blog as a way to help process through some of the things I'm dealing with and to maybe give my self some much needed therapy by finally putting it all out there. I am hoping that through this blog I might be able to help someone who is going through what I've already been through, or maybe even shed a little light on those "hidden" diseases. "You don't LOOK sick" is a standard answer when I tell people for the first time what I've been through and live with daily. I want people to realize there are a LOT of people who suffer in silence because we don't "look sick". I might post a few other odds and ends occasionally because my life is so much MORE than this disease. I'll tell you more about that disease and how it came to be diagnosed in the next couple entries.