A Crohn's Emergency Room Visit

Our Crohn's Emergency Room Experience

 

Basically if you have Crohn's, it really stinks to have to go to the Emergency Room. Because you're in lots of pain, really nauseous (with potential of throwing up in front of other people - awful, just awful), and feeling really bloated, but you're not considered to be a "life-threatening" case in the eyes of the ER staff. That being said, things move realllllllllly slow for you. Why? Because the guy who comes in having a heart attack, and the family who've been in a car accident take precedent and your doctor ends up spending lots of time with them, and you lay there looking at the same spot on the wall for, eh, roughly 15+ hours.

This was us in the Emergency Room today. We saw a hospitalist right away, got labs and some other tests done quickly, and then sat... and sat... and sat some more, waiting for Brandon to be taken back to Radiology for a CT scan. Then we waited for um, a long time, and a little while longer, for the results to be read. Then we waited for someone to come and tell us the results. Then we saw a few more doctors and did a little more waiting. Oh, and we're still waiting. Ha. No, really, we are.

Brandon has a partial intestinal blockage at the site where they stapled him back together after removing those 18 inches in his surgery a year ago. One of the physicians showed us the CT scan and it is crazy that you can see where he was put back together and how different the intestines are above and below that site. No wonder the poor guy is in so much pain. (Insert sad face emoji.)

The whole day I was afraid someone was going to say the "S" word. You know, "surgery." The whole day basically feels like a blur, since I'm running on 4 hours of sleep, a cup of coffee, and a lot of adrenaline (and anxiety). The GI surgeon came to see Brandon this afternoon and said that they'd like to take a conservative approach, but then the GI doc called and said that the site of the blockage is too high to reach through a lower scope and too low to reach through an upper endoscopy. Sooo, essentially, our options are steroids and medications and time OR ... the "S" word. (insert despair face emoji, or the sad face one again, or let's be real, both of them)

I cannot tell you how exhausting an Emergency Room visit of this magnitude is. I'm sure some of you know what I'm talking about, but for those of you who have been blessed enough to have never had to visit the ER, its just this crazy hurry-up-and-wait, anxiety-filled time of pain and unease, and getting really stiff (hospital furniture leaves a lot to be desired). Plus, there's this thing called shift change, where all the nursing staff switches out and you have to get to know a new nurse, feel them out (you know, whether they have a good attitude or if they stink, or whatever) and tell your story AGAIN. We probably said the same thing 16 times today, because that many doctors and nurses were in and out of our ER room. Plus, its this disjointed awkward retelling of the story, because we're sleep deprived, one of us is doped up on pain meds, and we can't remember who we told what, and when. And leaving out details is not an option, not when your intestines are at stake anyway.

On a high note, I got to eat a really lackluster sandwich from the hospital cafeteria, and Brandon didn't have to drink contrast for his CT scan. I kid, I kid. That was my attempt at sarcasm as a coping mechanism, but I really did have a pretty lifeless sandwich and Brandon really didn't have to drink contrast, which is a blessing, because when you're bloated and feeling full and overly nauseous, being told you have to drink 32 oz of wanna-be powerade-like syrup is definitely awful.

Please pray that he will get admitted quickly and get into a room upstairs soon. He has been laying on a stretcher (again, it leaves a lot to be desired, or in Brandon's words "Its a glorified piece of cardboard") ALL DAY and he's ready to be a little more comfortable. Also, please be praying that the GI doctors and GI surgeons can collaborate well together tomorrow and come up with a solid solution. While we're praying we can avoid surgery, we also want the best solution for the long-term. We don't want to put a bandaid on a big problem and end up back here again next week.

Pray that we can get some rest, that the boys experience some normalcy, and that we can arrange for childcare for them if I need to be with Brandon at the hospital.

Thank you for being our prayer warriors, and for reading such rousing and comical posts (read: long and heavy/depressing) about our experience with Crohns and our long day in the Emergency Room.

Look for more rousing and entertaining satires later (insert big toothy smile emoji, or the laughing one).

Crohns Strikes Again... The Recurring Nightmare

I write this sitting in a vinyl Emergency Room chair beside my husband, who is currently hooked up to monitors and IVs laying on a stretcher. He's drifting in and out of a pain-medication-induced sleep. We've been up since around 3:00am. Brandon didn't sleep well before that either, because he was up at midnight in pain and nauseous, so its good that he can get a little reprieve from the pain now.

Mean Crohns... leave my boy alone.

Meanwhile, I've been watching the hospital's logo bounce around on a monitor and listening to the night-shift nurses switch out for the day shift while I surf the internet desperately researching what our options are. It was deja vu to walk into this ER at this hospital, because a) I used to work here and b) it feels like we were just here with Brandon. It has almost been a year since Brandon was here last and had surgery. Why, Lord, why are we back so soon?

We're currently waiting on radiology to come take Brandon back for a CT scan, and he's already had some labs and other tests done.

Our major concern at this time is that Brandon may have to have surgery again if he has another intestinal blockage. We are also very concerned that either the Humira injections are not working, or that his type of Crohn's is truly so aggressive that it can't keep up. I don't want to bore you with the details but Brandon has an aggressive type of Crohns called stricturing Crohns, which basically means that when he eats, his intestines get aggravated, and when that happens sometimes his intestines get angry and inflame - a flare - and when they get super mad at him, scar tissue forms. When the scar tissue forms, a layer is added to the inside of his intestines, making it slightly smaller in diameter. Think of it like this... say you have an empty paper towel roll and you pour thick paint on the inside every day for a year. Each time the paint is poured on the inside of the roll, a layer of paint forms, drys, and the next day another layer is added on top. Eventually, you won't have a hollow roll anymore, because the layers of paint are so thick. That's what's happening to Brandon's insides, except a little less colorful and definitely more painful.

We have more questions than answers at this time and I'll be sure to update later when we know more, but for now, please pray for my husband. This is like a nightmare to be back in this place of pain and the unknown. If you want to get specific, here's how you can pray with us:

• That the tests would be done quickly and be conclusive
• That his doctor or someone familiar with his case will be here today and can consult with the ED physicians
• That his pain and nausea would be eliminated
• That we will get answers about a solution that will work longterm (whether Humira injections or not)
• That he won't have to have surgery, but if he does that it would be minor and quick with no complications
• That he won't worry about missing work and that his coworkers will have a light day in his absence 
• That I will have the time and clarity of though to get some work done while we're here
• That our boys won't worry and that they will have a fun day (Paxton was upset this morning when he found out where mommy and daddy had to go - break my heart :( ) 

Thank you for praying with us! I hope to have a very positive update soon!

PS If anyone has any advice or experience with Crohns, we'd love to hear from you. Or if you want to leave a note of encouragement for Brandon in the comments below this post, I will read them to him when he is up to it! I know it will help him feel better! :)

A Day of Hospital Tests and Just As Many Questions As Answers

As most of you know from reading this, today Brandon had an MRI at UNC Hospitals. He was scheduled to have an MRI at 9:00am and then see his doctor immediately following.  I could tell he was nervous and got up bright and early to get to work before he had to be at the hospital. He told me this morning that his main concern about the MRI was having to drink contrast, because it causes major discomfort in his abdomen, and plus it tastes disgusting. Well, he ended up having to drink the contrast not once, but TWICE, because it wasn't showing up clearly enough on the scan.

MAJOR BUMMER.

I told him "you can do anything for a short amount of time" because that's what my mama always told me growing up anytime I had to do something difficult or uncomfortable.

After the MRI, Brandon went right to clinic and was seen by his doctor. There he was told that most likely he would have surgery on Monday, and then he was whisked away for bloodwork, and back to the clinic.

Yes, our hearts stopped...

It turns out that we have good news and bad news.

The good news is that Brandon doesn't have to have surgery (today, at least) after review of the MRI, or an abdominal stent put in (think balloon heart catheter, but for your intestines).

The bad news is that Brandon has a very aggressive form of Crohn's disease and his MRI showed that his intestines are highly inflamed. The doctor said that about 20% of Crohn's patients have his type of Crohn's disease: Stricturing Crohns, which basically means his intestines are constantly inflaming and forming scar tissue.

If you're following along, you're probably putting 2 and 2 together. Brandon has a flare up, scar tissue forms, repeat repeat repeat, Brandon has surgery, Brandon has flare up, scar tissue forms, repeat repeat repeat, until when? Until he has nothing left? Until he's been cut open more times that we can count?

So what's the plan?

The plan is to immediately begin a steroid regimen to try and decrease the inflammation. Long-term, the plan is to have Humira injections multiple times a month. The nurse is working on getting insurance approval for this therapy though, because initial injection costs are $6,000 and regular monthly maintenance costs are $2,000. We are praying that insurance will pay the majority of this cost, because once Brandon begins this kind of therapy, he can't stop it and begin it again because his body will develop antibodies to it and it will be ineffective.

This worries me. There are only a handful of drugs out there that will work with this kind of condition. And there is a 50% success rate with each one. And even if one of these drugs works for him, there are lots of side effects.

We are swimming in information from today. It seems like so much to know all at once, and we want to make the right decisions, not just for right now, but for long term. We have so many questions about how to manage this condition and what is best for Brandon. Please pray with us over several things:

For complete healing... but if not...

That the inflammation would go down with the course of steroids and that no further intervention is needed to get over this flare.

That the insurance would cover the cost of the injections.

That his body would respond positively to the injections and the other medication he will be put on.

That he would suffer no side effects.

We are so thankful that we have such an army of prayerful friends who are joining us and lifting us up. We are surrounded by friends and family who have shown us love and concern and have kept encouraging us all day long. My phone battery is dead already because of all the messages I received constantly all day. You all are the best. We love you so much! You don't know just how much your kind words mean to us.

We want Christ to be glorified through our lives and how we respond during trials like this one. We are grateful, desperately grateful, for His grace and mercy because though the last year has been nothing like we ever imagined, we are far more blessed than we even know. We sat at home tonight and soaked up our beautiful family. We can only hope and pray that God is using this to mold us to do great things for His glory and that others may come to know the source of our strength, for we are not along.

I was reminded today of that beautiful promise when I heard a certain song on the radio and thought of this verse:

Isaiah 41:10 So do not fear, for I am with you;
    do not be dismayed, for I am your God.
I will strengthen you and help you;
    I will uphold you with my righteous right hand.

A Fairytale Wedding + A Crohn's Update & Prayer Request

I've struggled for awhile with what to blog about, so that's why my posts have been scarce since Brandon's hospitalization. It feels like every time I want to sit down and start a new post, I can't quite seem to come up with the words.

I guess I'll just dive right in this time so I won't have time to think about it.

This past Saturday, Brandon's brother Brad got married. Last week was an exciting week because it was spent...

Putting last minute touches on Jessica's garters that I was making:

Finishing up sewing the boys' bowties:

Completing the burlap ring bearer pillow I made for Paxton to carry (picture to come later), getting pedicures with the bridal party...

Going to the rehearsal and rehearsal dinner:

And of course anticipating the big day on Saturday. Brandon was going to play golf with the groom and other groomsmen Saturday morning and I was going to spend my *birthday* morning (yep! My birthday was on Saturday, the day of the wedding!) with the boys and waiting for my mom and Deryl to arrive.

All was going great (wedding crafts completed - check! pedicure - check! rehearsal - check! golfing - check!) and the boys decided they wanted to treat mommy to a pancake breakfast :)

Around lunchtime, Mom and Deryl arrived and took the boys and I out for lunch and when we got back home, the plan was for me to change into my dress, doublecheck we had everything we needed for the wedding, and leave in time to get pictures with the bride and bridal party before the wedding.

Here's my opportunity to use that creepy line in suspense novels...

Then the phone rang...

Yeah, I did it. I said the creepy suspense novel line. Whatever. But seriously, the phone rang.

Anyway, Brandon called and I immediately knew something was wrong. He, in a very strained voice, asked if I had left yet because if I hadn't, I needed to come pick him up ASAP. He was having severe pain - hospital level pain - and wasn't sure he was going to be able to get out of the bathroom without help, let alone stand alongside his brother at the wedding later.

This wasn't the plan. The plan was to meet at the wedding, have a glorious time celebrating 2 people we love so dearly and for everything to go smoothly. The plan was to dance the night away, eat wedding/birthday cake, and cry happy tears at how great mushy-gushy love stories are.

The plan was for life to be normal after surgery... The plan was to have a bit of a BREAK after mountains of medical debt, months of turmoil, and years of pain...

But instead, I found myself throwing clothes in a hospital bag in my floor-length dress I had already changed into, grabbing phone chargers and socks for just in case, and barreling down I-40 to get to my husband as quickly as possible.

In the span of less than an hour, I had made arrangements for Paxton to get to the wedding (you know, just in case Brandon and I were stuck in the ER somewhere), packed a hospital bag, and talked with him several times to check on him before I got there. On the way to drop Paxton off with Cole (thanks Uncle Cole!!!), Paxton sensed something was wrong and immediately told me that we should pray for daddy's tummy:

"Dear God, can you please help my daddy's tummy feel better? He's real sick and me and mommy are worried about him. If you could help his tummy feel better and help us get a great night's sleep, thanks! Amen!" (He always prays that we'll get a great night's sleep... guess we pray about that a lot!)

Brandon was weak. Really, really weak, and in lots of pain. Luckily, he had pain medication leftover from after surgery and he took some. And then took some more. (And maybe a little bit more.) He was literally sucking on pain pills because he couldn't swallow anything and keep it down. My poor, sweet husband was determined to make it to that wedding. I know that all he could think about in that moment was not letting his little brother down. He thinks so much of Brad, of what a strong young man he's grown into, and wanted so desperately to be able to stand beside him on such an important day.

We called on prayer warriors to get us through the evening and pretty much expected to be heading to the hospital after the wedding ceremony. Our church was asked to begin praying, and we had tons of family and close friends on the job as well. Brandon was a little loopy from the pain meds, but made it through the ceremony and we were able to stay for the reception too, only by God's grace! Brandon was hungry (and nauseous from having pain medication on an empty stomach) but wanted to just go home and see if he could sleep. He spent much of the next day in bed or in the recliner and tried eating small portions at a time to see how his body would react.

See, he had been in a Crohn's flare for the past week and a half but was able to control it by limiting what he ate and trying not to overdo it. He kept saying that he knew something was different and that it didn't feel right. He had been using essential oils before each meal and that seemed to really help but he knew something was off. The pain the day of the wedding was "blockage" kind of pain and to be quite honest, that terrifies me.

Why? Because there's no way we could possibly have to go through what we went through last year so soon, right? He wouldn't have to have surgery... again... would he? We couldn't possibly have more medical bills and more pain and more time out of work, right?

Right?

This week has been spent trying to arrange doctor's visits so we can avoid an ER visit and of course UNC doesn't have an appointment until July, and this integrative natural doctor's office we're trying to get in with doesn't have anything until August. OK... really?!

But today, the nurse for Brandon's doctor at UNC called him and said that they are moving appointments around in the morning because he needs to be seen ASAP. He was immediately put on the schedule to have an MRI at 9:00am tomorrow and to see the doctor in clinic right afterwards. If you know anything about big hospital systems like UNC, you know that the doctor must be concerned, because things just don't move that quickly.

We are worried. When the doctor moves patients around just to see you, you get a little nervous. I've caught Brandon several times tonight, eyebrows furrowed, with eyes lost deep in thought. He's worried about taking the time away from his job to have the appointment, he's worried about the appointment, and he's worried about his health.

I'm worried, because my husband is worried. The good news in all of this is that we don't have to worry.

"Therefore do not worry about tomorrow, for tomorrow will worry about itself, Each day has enough trouble of its own." Matthew 6:34

"Do not be anxious about anything, but in everything, in prayer and supplication, present your requests to the Lord." Phillipians 4:6

"Cast your cares on the Lord and He will sustain you, he will never let the righteous fall." Psalm 55:22

We are asking that you, our friends and family, join us in prayer tonight, and tomorrow as Brandon spends the morning in testing (they mentioned possibly needing to do a scope too!) and with the doctor. We are specifically praying for peace, wisdom for the doctors, positive results, and a simple longterm solution.

There is much more to our story I'd like to share but it seems as though I've written a book. Maybe, if you'll let me, I'll share bits and pieces in the weeks to come.