The Downfall: Part 1

blood transfusion #3

blood transfusion #3

“Therefore I am well content with weaknesses, with insults, with distress, with persecutions, with difficulties, for Christ’s sake; for when I am weak, then  I am strong.”
2 Corinthians 12:10

I can’t believe I haven’t blogged in months!  That is saying a lot though, considering I haven’t been able to even sit up straight in months.  This has been a crazy journey that is inexplicable in words.  I have learned more about myself in these past 8 weeks then I probably will for rest of my life.  You always are reading those sayings that, “life can change in the blink of an eye,” and many of us don’t really pay much attention.  Maybe losing your health really helps you to find the place outside yourself that makes you thankful for everything that you have, or think you did.

I thought my life was manageable.  I thought the countless pills and the unbearable morning pain was just something I was going to have to deal with for the rest of my life.  As my pain and nausea got worse throughout the late spring, my hopes started to fade.  What was happening to me?  3 weeks ago I was cooking beautiful dinners for my boyfriend, going to the gym, planning on finding new jobs and new ventures.  As the pain grew so did my frustrations and confusions.  What was I doing wrong?  Had I pushed myself too hard?  Was I expecting too much?

the potion that almost killed me

the potion that almost killed me!

Finally, my GI called for a colonoscopy.  I was working, barely.  Trying to fool everyone, even my self.  Just spending everyday fearing the pain of when I would have to use the bathroom next, which was growing close to 20 to 30 times a day.  Another lovely symptom also began, vomiting.  I had never throughout the entirety of my disease ever thrown up.  That’s when I knew something was going very wrong.

On one of my last days in the office at the end of April I had a painful flare attack of abdominal pain like I had never felt in my life.  My boss was there watching in horror as I sat in my chair unable to breathe or even blink.  She wanted to call the ambulance, but I had to remind her that this is my daily and pain like this comes and goes.  Little did I know, or want to admit, that that did not have to be my norm.  People do not live in pain like I was living in.

When I went home to begin prep for my colonoscopy all hell broke lose.  I drank the magnesium citrate and literally almost died.  I was up all night going to the bathroom close to 50 times with so much blood that even after everything I saw, I was terrified.  I didn’t know if I should take myself to the hospital, wake my mom up or just lay and try to be calm.  I took a Vicodin and called my doctor in the morning.  He decided to do my scope as an inpatient since I could not handle bowel prep on my own.

I was admitted into the hospital the next morning.  At this point in time I was struggling very badly mentally.  I truly believed that my parents thought that I was making this all up in my head.  That I was taking too much Vicodin and causing this for myself.  This was very upsetting to me, because of how sick I really did feel.  I felt way more sick than I ever did when this process began in October.  My numbers looked decent according to my dad, but why does that have to necessarily mean that I FEEL good, because I certainly did not.

My scope showed that my right side of my colon had healed pretty well, but the left side and top were still destroyed.  Which made a lot of sense since that’s where a lot of my abdominal pain was coming from in the morning.  They changed my medical routine a little bit, decided that my next Remicade would be double and discharged me into a weekend that I won’t ever forget.

picc line

picc line

When I got home from the hospital the first week in May I have never been so sick in my entire life.  I don’t know if my body finally was just like, “screw you, Im done,” or if it really was just time for me to throw in the towel and tell my colon cya later.  I couldn’t eat, I couldn’t sleep, breathe or even move a certain way without me triggering having to go to the bathroom.  My dad brought home IV fluid for me to push through over the weekend but nothing was working.  I was so sick that I cannot even write to explain it.  My body felt like it was melting into the ground.  My dad would force me to eat and I would hide food in the trash that he would bring into my room.  It was more than terrifying.

another day, another hospital stay.

another day, another hospital stay.

He came home from work after days of suffering and 8 pounds of weight lost.  He looked at me with the saddest face I have ever seen my father make.  My dad is a surgeon, he is a tough guy.  I have never seen such emotion out of my dad as I have throughout my entire disease process.  He looked at me and informed me that they would be putting me back in the hospital.  Another pic line, TPN and more Remicade.  My response, “Thank God.”  I was literally so sick that I couldn’t do it on my own anymore.  I needed so much help.

I went back to Aultman so sick that I barely could speak my own name.  For 8 days they treated me with high dose steroid, pain medicine and a double dose of remicade.  I was starving all the time, soft diet, which came out constantly anyways.  All I could do was sleep and pray that it would be over soon.

I went home feeling somewhat better after my Remicade.  They made me stay on TPN home infusions at night which were absolutley terrible.  They are huge 5 pound bags of fluid that I had to drag back and forth to the bathroom all night.  I later found out that they were even making me go more!  But my protein levels were so low I was like a little mal-nourished orphan child.  My body changed and my attitude was beginning to look more to other options..  Plus the at home care nurses, bless their souls I know its their jobs, but they are the most obnoxious people to walk the face of this planet.  My assigned nurse was named “Cyndi.”  Cyndi is one of those special breeds of people that is afraid of everything and is very meek.  Complete opposite of my family.  She informed me one day while cleaning my picc line that she gets a nervous feeling whenever she drives to Columbus.  Okay, Cyndi, its time for you to draw my blood and move on with your scary life.

Her last visit with me she told me she was moving back down south as if I was supposed to be throwing her a good bye party.  She told me and waited for a response from me like I wasn’t sitting there with a degenerate disease that was eating my body from the inside out.  “Oh, really Cyndi, you’re moving down south?!  That’s soooo great for you!”  There is not one thing in this world I could think that I could care less about than that woman moving.

As the weeks wore on and the Remicade wore off, more and more time was being spent in bed.  I had to force myself to eat again.  By the time my 4 week check ups were due for my doctors I could barely move.  My body was so sore from all of the steroids and the effects of the disease.  I was crashing-again.  Another blood and iron transfusion were ordered.  I always would get very upset with my primary care doc because she ALWAYS wanted to talk about getting my colon out.  This surgery was never supposed to happen for me. These medicines and therapies were supposed to work and I was supposed to go through life fighting through flares and helping others.  Whenever she talked about surgery it sounded to me like failure.  I am a control freak and I do not like to fail.  I had a follow up with my GI the same day.  I love my GI doc Korkor and he loves me.  From the beginning he never wanted surgery for me.  He knew that we could fix this!

This day, unfortunately was different.  When I told him how the past few weeks had been going he did not seem happy.  Bathroom still over 30 times a day? Not good.  Pain still intolerable? Even worse.  He looked at me with the most serious face that you never want to see come from a doctor.  “Brooke, your medical treatments have failed you.  I’m sorry, but surgery is inevitable.” I felt the most out of control emotion rush out of my body.  Tears and hyperventilation immediately.  How was this happening?  How did it come to this?  This wasn’t part of the plan?  He then told me we would try a few rounds of Humira.  Great. Amazing.  Bring it on!  Iwasn’t ready to lose this fight yet!

3 thoughts on “The Downfall: Part 1

  1. As a fellow sufferer I can relate to how bad the pain is. I was diagnosed November of last year. After 4 rounds of prednisone and the usual asacol the flares just kept coming back for me. Finally my GI put me on a drug called imuran that allowed me to come off of the prednisone. The imuran took about 4 months to start working but seems to be doing something. I go to the bathroom 2 or 3 times a day and there is still blood but very minimal pain mostly just when a big gas bubble is stuck. I still fear long car trips and being away from my own bathroom. I have changed my diet so much but feel it doesn’t make much difference. This disease really is a life changer. Your story is inspiring. Please follow me on Twitter @Adam_Dodsy. I’m following you 🙂

    • Adam:
      Thank you for sharing! I also tried a drug similar to imuran called 6mp, but I became very, very ill and was almost put back in the hospital. I’m glad that it seems to be helping a little bit, though! I know how frustrating the pain can be. I can relate with the fear of being in the car, I hated the car before my surgery, especially since my family lives about 2 hours from where I do and visiting meant serious motivation. The disease is hard and the decision to have surgery was even harder, but in the end I know I will be so glad I did. Even though my body is so different and it’s going to take a lot of time to get used too, I feel so much better. I will surely look for you on twitter! Thanks again for commenting!

  2. Hi my Brooke. I am so very proud of you for writing this blog. You have inspired me just by knowing you and especially with your
    words. Thank you for sharing and can’t wait to see you “Still Standing Strong!”

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