Friday, May 20, 2016

Crohn's Disease

This week was a busy one! On Monday I had a blood test, and on Thursday I had my third Remicade infusion. I had it done at an Infusion center in the hospital. They were so nice there! Seriously. They offered me drinks, snacks, and warm blankets. With how often I go to the doctor and the hospital, I get so frustrated dealing with cranky nurses and mean front desk people. It was such a breath of fresh air to have kind people who sympathized with how sick I feel.

It took most of the day to get the infusion and then I had more blood work done to re-check my anemia. Apparently my anemia has not gotten any better since I left the hospital, in fact it got a little bit worse. This explains why I am still so tired, and why I now get to add one more pill to my list- Iron.

I guess the Remicade is technically a chemotherapy drug- and an expensive one at that! Each 100 mg is roughly $1000. On Thursday I got 600 mg. I can definitely think of some other ways I would rather spend $6000!

I told you all I would keep you updated with the results of the blood test I had done earlier this week. Well, today we finally got the results back. Unfortunately, my blood work came back positive for Crohn's Disease. My doctor said to remember that it is only 75% accurate, and there is still a chance it isn't, but based on my symptoms and the blood work, she thinks it is likely Crohn's.

So I guess the big question everyone has on their mind is, "what now?"

When I spoke to my doctor on the phone tonight she had just gotten off the phone with my colo-rectal surgeon. They both feel that surgery is in the near future because I don't appear to be getting better. {I would like to add in here that I have been feeling better- I have had so many good days in a row and I really felt like things were on the mend! But since yesterday afternoon I haven't been feeling so great and this worries them.} Also, unfortunately with the Crohn's diagnosis I am no longer a candidate for the J-Pouch surgery. This means that I would have a colectomy and a colostomy bag for the rest of my life. I instantly started crying when I heard this news. I know there are far worse things in the world than having the bag for the rest of my life, but somehow the news was a little overwhelming. To be honest, I'm not entirely sure it has sunk in all the way yet. 

Our current plan is to make it through the weekend. Since I haven't been feeling well, if I even throw up once I am supposed to go straight to the ER and be admitted to the hospital. (Which will probably result in surgery shortly thereafter). If I can make it through the weekend without throwing up then I have an appointment to see my GI doctor on Tuesday afternoon and we will re-assess everything then. So my weekend goal? Soup and lying down. I don't want any part of that ER or hospital. I'm so over that place.

Part of me wonders if I over did it. Maybe our whole move was just too much. Too much movement, too much stress, too much change. We had SO much help though and we have been so blessed. I seriously feel like I hardly did anything. But I think the problem is that my "hardly anything" is still too busy for this disease. Also, having a two year old makes everything so much more stressful. He doesn't mean to be, but he is SUPER LOUD. One of the side effects of the steroid I am taking is a sensitivity to loud noises. It is so strange. Him yelling or talking is like nails on a chalkboard and it just grates on my nerves- causing stress- causing bowel flares. Or maybe I ate the wrong thing. But how would I know what the wrong thing is? But who knows. Maybe I didn't do anything at all. Maybe the disease just has other plans for me.

Miss Charlotte loves to snuggle me on my hard days

This made me laugh so hard- I have the WORST swelling in my face from the Prednisone! I can't wait to get off of this stuff! (Hopefully 5 weeks left and counting...)

So for now, tonight, I am overwhelmed. But a tiny part of me still has hope. I know I was feeling better and I can't deny that. I believe that the Lord has a plan for me, and it is very important that I remember that His plan is ALWAYS better because He sees the bigger picture. Even when that plan is the exact opposite of everything I think I want for myself. Tonight I was thinking about all of the amazing people I know and how many of them have been through extremely hard trials. Trials suck, yes. But they give us an opportunity to refine ourselves just a little bit more. We will be chipped, chiseled and polished, until one day we become the type of people our Heavenly Father intended us to be, and He intends us to be like Him. It reminds me of one of those cheesy LDS songs that comes on Pandora occasionally that I love. The lyrics are:

We pray for blessings, we pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity

We pray for Your mighty hand to ease our suffering

And all the while, You hear each spoken need
Yet love is way too much to give us lesser things

'Cause what if your blessings come through rain drops

What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise

We pray for wisdom, Your voice to hear

We cry in anger when we cannot feel You near

We doubt your goodness, we doubt your love
As if every promise from Your word is not enough
And all the while, You hear each desperate plea
And long that we'd have faith to believe

'Cause what if your blessings come through rain drops

What if Your healing comes through tears

What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise

When friends betray us

When darkness seems to win

We know that pain reminds this heart
That this is not,
This is not our home
It's not our home

'Cause what if your blessings come through rain drops

What if Your healing comes through tears

What if a thousand sleepless nights are what it takes to know You're near

What if my greatest disappointments or the aching of this life

Is the revealing of a greater thirst this world can't satisfy

What if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise

This song is called "Blessings" by Laura Story
And so my friends, I'll continue to ask for your prayers for a miracle, your patience with me as I try not to be such a hot mess all the time, and your stories. I love your stories of perseverance and overcoming trials. They give me so much strength when I need it the most.
I'll update you all again on Tuesday- pray the soup and lazy weekend keep me out of the hospital! 

Love you all. Chelsea


  1. Oh that song made me cry. I can't tell you how much I've prayed for peace and blessing and cried my eyes out when all that seemed to come are trials. Things have been so hard but there have been moments where I've seen how much Luke and I have grown. I'm so sorry you're going through this. I've found writing down moments in my notes app on my phone when I've felt God's love or the words of a priesthood blessing have been nice to have when things seem dark and everything hurts. Sometimes you need to be able to look back and remember those powerful moments so you can make it till the next moment when you feel God there beside you. I wish we could do more to help but know we're rooting for you!

  2. I'm So sorry Chelsea. Getting a diagnosis like that is so hard. I also have an incurable disease and when I first was diagnosed and started treatment it was so so overwhelming. A year and a half later I'm still in treatment, but it's so much more manageable. My sister's father in law has Crohn's disease as well and I remember when he was diagnosed it was awful, but it's manageable and he's doing well now. I know there's not much anyone can say that is comforting, but one way I found comfort was finding the Lyme disease community on instagram through hash tags and finding people who were going through the same thing. I hope you have a no hospital weekend!