an incredibly hard day, but God is faithful through it all

Today has been an extremely emotional day for me. I hope to write this post cohesively, but it might go all over the place. I want to be very honest in this post for me to have to look back on. If you don't care to read things about medical issues, this might not be the post for you. Also, this may be the longest post I've ever written.

I have been dealing with GI issues since I was 18. Things rapidly deteriorated after 2007.  2008-2011 were years that I had MULTIPLE issues and 4 surgeries for some of those issues. In 2011, I was diagnosed with irritable bowel syndrome and really believed that was what was wrong with me. 2012, 2013 and 2014 brought ER visits and a stay in the hospital for more severe abdominal pain and a partial obstruction. 

My last ER visit was in September of last year. It was once again recommended that I get a colonoscopy.  (I had attempted to do one at the very end of 2013, but was unable and then, like my typical self, just blew it off.) I was set up to have an EGD and colonoscopy in November. I once again was unable to finish the prep for the colonoscopy. My EGD was normal. You would think that that news would help me consider blowing off the colonoscopy again, but in my heart I knew I needed it done because something was wrong with me. If it was not in the upper GI, it had to be in the lower.

They finally gave me a prep that I could tolerate and I stayed up ALL night making sure I drank enough and was "cleaned out" enough. The next day, December 10th, I had my colonoscopy. I remember the day (December 15th) that the letter came in the mail with the results. I was sitting at the bar and Tim was standing near talking to one of the kids. I read it and my heart sank. I gave it to him to read. "The biopsies of the junction of your small intestine and colon agree with the diagnosis of Crohn's disease."

I truly did not believe that I would have that diagnosis. I still had the upper GI series tests on December 29th. Those tests were normal, but that did not change the diagnosis. The month has been spent in absorption and processing this news. I go from happy that I finally know, to just shocked that I have a chronic disease. I go from angry that it has taken so long to find this out, to just sad at the time I have suffered.

So, you may wonder, what exactly have I experienced over the years? I have experienced so much pain. A couple of the ER visits were because I was in so much pain that I could not stand it and they never could pinpoint a reason for the pain. I have had bouts of extreme diarrhea. I have had a fistula, an obstruction, and been unable to eat more than a toddler sometimes. I am now lactose intolerant. I have severe fatigue and I do not write that lightly- fatigue so bad that my body feels heavy from it. I also have intense irritability. I'm not me when I'm like that and I hate it.

I rarely discuss this stuff or complain about it outside my immediate family and very, very close friends. I have several people who have been astounded that I am continuously in this much pain. When you live with it for so long, you learn to push through it a lot.

Right now, I'm just so emotional because all I can think of are the past 8 years and what all has happened. I'm just so sad that I have felt so bad through a ton of it. 

So, today was the day that I was to see my GI doctor to discuss my Crohn's disease and to discuss therapy. I've learned so very much about Crohn's over the last week. There are even different types of Crohn's.

What did I learn today? I learned that my type of Crohn's disease is Ileitis. This means that my Crohn's affects my ileum which is the last part of the small intestine that connects to the large intestine. My ileum is inflamed and narrowed. The pathology report from my biopsy stated that my tissue showed Crohn's and that the inflammation showed chronicity, meaning that it had been there a long time.

Since I present with abdominal pain, joint pain, and fatigue, I am having symptoms. I'm not having diarrhea much presently. The question right now is: do I just have inflammation or do I have scar tissue? The two types of medicines that can help my case are immunosuppressants and biologics. The doctor recommends the biologics which are medications like Humira and Remicade. They are working with my insurance to get me set up with Humira. It is a ridiculously expensive medicine and I will likely take it for a long period. It is also a medication that I will have to inject into myself weekly. I about fell off of the exam table when they told me that news.

I could not leave today without having something to help me between now and the time I can get that going. He said that we could temporarily do a corticosteroid. The one he prescribed is super expensive, but has few side effects and I will take it for 3 months.

Now, I don't really want to go there, but if I do end up finding out that I indeed have scar tissue built up and not just inflammation, I will have to have a bowel resection. I can't think about it much, but it could be something that comes up. Right now, my prayer is that these medications will make me feel better. They should significantly help me feel better if it is just inflammation. They won't make me feel tons better if I have scar tissue. Basically, scar tissue buildup won't go away and it keeps my ileum blocked and I could be having partial obstructions frequently. The inflammation can cause that too, but if it's that, then the medicine will help that subside and things should be able to go through smoother and that will be what helps me to start feeling better.

The doctor mentioned that my fatigue is caused from the immune response in my body that is continuously happening. It's like your body cannot find the off switch.

Once we left the doctor my head felt so full of all of this information and I just felt so very emotional about it all. I very easily could have slid into myself and grieved over it tonight. 

I'm so glad that God had a different plan. It was no mistake that tonight was an event at our church called "Addicted to anxiety." One of my favorite teachers, Susan Goss, led the event. Her and some other ladies (some from our church) have created a ministry called Tangible Truth Ministries. 

We started off in worship and sang: 

Oh, I'm running to your arms

I'm running to your arms

The riches of your love

Will always be enough

Nothing compares to your embrace

Light of the world forever reign

AND

So I shout out Your name, from the rooftops I proclaim

That I am Yours, I am Yours

All that I am, I place into Your loving hands

And I am Yours, I am Yours

Here I am, I stand, with arms wide open

To the One, the Son, the Everlasting God, the Everlasting God

Rooftops by Jesus Culture

AND 

What a fellowship, what a joy divine,

Leaning on the everlasting arms;

What a blessedness, what a peace is mine,

Leaning on the everlasting arms.

Refrain:

Leaning, leaning, safe and secure from all alarms;

Leaning, leaning, leaning on the everlasting arms.

Oh, how sweet to walk in this pilgrim way,

Leaning on the everlasting arms;

Oh, how bright the path grows from day to day,

Leaning on the everlasting arms.

What have I to dread, what have I to fear,

Leaning on the everlasting arms?

I have blessed peace with my Lord so near,

Leaning on the everlasting arms.

Those songs are so full of trust, adoration and surrender. What could be better to hear on a day where you have learned such discouraging news? God reminded me that I can give this to Him. This disease is not on my back. No matter what happens, He will be there.

I heard Natalie Grant's song, Held on the way home tonight. I love this song. 

This is what it means to be held

How it feels, when the sacred is torn from your life

And you survive

This is what it is to be loved and to know

That the promise was that when everything fell

We'd be held

I felt so held tonight.