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! :)

Father's Day 2015

Yesterday we celebrated Father's Day. I hope Brandon felt as loved as he is, because we (the boys and I) could not imagine life without him and we love him dearly. He does so much for us, and I know there are times when he really doesn't feel good, but he gets down in the floor to wrestle with the boys, or unloads the dishwasher to help me out anyway.

I hope this year he feels better than he ever has and can enjoy being dad to these precious babies, because we are going to blink and they'll be waving to us as they drive off to college. I'm pretty sure I have to stop blogging now, because I have to go cry.

Here's the 2nd annual Father's Day video I made for Brandon.

Crohn's Injections Update

I guess its about time for an update! It has been a month since we started (I say we, and although technically I mean Brandon, it feels like a "we" thing, since we're going through all of this together) the Humira injections for Brandon's Crohn's disease.

The good news is that he didn't have any crazy side effects (so far) like growing tufts of hair in strange places, or  purple freckles popping up, or incessant sneezing... not that those were really listed as side effects but I sort of wondered in the back of my mind if something wild would happen. I mean, having my spouse give himself injections every 2 weeks sounds so sci-fi, doesn't it? Well maybe not exactly sci-fi, but definitely surreal. We went from "normal" like everyone else, to alcohol swabbing his leg and prepping for medication injections after burgers and baked beans on Thursday nights. Weird, right? Seems that way to me, but I guess this is our new normal.

But seriously, Brandon has been doing great. Over the past month, he's only had a few times where he felt bad, but those times were highly frustrating, because he felt like he had started the injections, so shouldn't he feel better already?! His doctor's nurse told us that it could be around 6 weeks before he would feel good and get leveled out at his "new normal." We're still a little nervous, because his Crohn's is so aggressive and had gotten bad pretty quickly, so we don't know what kind of damage was done in his intestines over the last 9 months while he wasn't on any medication to keep the inflammation down. We have been praying that the Humira will work to keep any inflammation away and that he can be in a state of "remission" for years and years to come. We would love if you would join us in praying for that as well.

The other thing that Brandon has been doing, is taking the Doterra Lifelong Vitality Supplements. We had heard great things about this before, but a friend gave us a month's supply for him to try and we think this has played a part in him feeling so good over the last month. We think this has helped combat the fatigue from the Humira. Brandon has said on several occasions that he can tell when he's forgotten a day of the supplements because he will be so exhausted on those days. He says his energy levels are so much higher on the days where he takes the supplements. That was one of the things we worried about with the Humira injections, because he had experienced major fatigue during Crohn's flares before and it seriously wipes him out, and we didn't want him to have to battle that fatigue forever.

We are really hopeful that he will start to feel great all of the time very soon!

Introduction to Essential Oils

A Story of My Introduction to Essential Oils

I was in my third trimester of my first pregnancy when I was first introduced to essential oils. I was having this strange hot pain in my throat that I didn't know how to deal with. Yep, you guessed it. I was having heartburn for the very first time in my life. I had never had indigestion before so I had no idea what this fire-y pain deep in my throat was. A friend of mine asked if I was open to trying essential oils for that and to help me sleep better and brought me some samples. I ended up using them and then forgetting about them for awhile.

Fast forward a few years, and my interest in natural remedies had skyrocketed. I became concerned about eating foods that are so processed, using antibiotics so much, and popping pills for anything and everything. I also became a full fledged germ-o-phobe. I hate to throw up (I actually have a fear about having to throw up) and I also haaaate when my boys are sick. So, I did some research, bought some apple cider vinegar and grapefruit seed extract, and decided to try essential oils again (so crunchy and hippie I know). I went to a specialty vitamin store and bought essential oils to blend together to use.

It worked. Not just once, or twice, but several times over a period of 4-5 months. Each time, the boys would start to get sick, and I used the oils, Brandon and I would say that maybe it was a coincidence and not really a bad cold since they immediately got better. After around the 6th or 7th time of our boys NOT getting sick when they were STARTING to get sick, we tentatively said we thought the essential oils worked. By this time, I was also diffusing lavender essential oil every night before bed to help promote good sleep.

I branched out and tried a few other oils to help with other things and by this time, I'm hooked. We've been at the pediatrician's office much less than previous winters, and you know with 2 toddlers that is a feat in itself.

So far I've used essential oils to help with sleep, anxiety, allergies, stomachaches, headaches, rashes, cough and congestion, energy, Brandon's tummy troubles, to boost our immune systems, and to take the burn out of a burn. I'll be sure to write a separate post with how we dealt with the stomach bug using essential oils, too. We mostly use essential oils topically (usually diluted with a carrier oil like coconut oil or olive oil) or by putting them in our diffuser.  The kind of essential oils I use can be also ingested because they are therapeutic grade, but not all essential oils are created equal and I do not recommend ingesting just any oils. I decided to go with that brand of essential oils because they are certified therapeutic grade and in my research thought they were the best fit for me. Plus, I like that I can earn rewards to use and get free oils, plus earn commission.

Because we have seen such positive results from using essential oils, I've been able to help many of my friends with health concerns or other issues they are facing and would love to help you too. If you purchase essential oils from my site (contact me to get the link), I will receive a small commission, and it will go to help my family. I appreciate each and every one of you who have (and will in the future) help support us! Plus, I can't wait to help you change your medicine cabinet and see how natural remedies like essential oils can help your family too.

If you liked this introduction to essential oils, and would like to know more, please feel free to contact me and I will be happy to help get you started or answer questions. Plus, if you sign up under me, you can start earning commission too and be eligible for rewards on every purchase! Just ask me how.

And So It Begins...

Today is the first day of the rest of our lives... with Humira, that is.

We received word late last week that our insurance company had approved the Humira injections for Brandon! Hallelujah! Praise the Lord!

Just to recap, or in case you missed it, these injections cost $6,000 to start, and the monthly maintenance dosage cost is $2,000, so for insurance to approve this and help with the cost is amazing and SO very very needed!

For the last 2 weeks, we have prayed diligently over Brandon and the decisions we've needed to make regarding this medication. As with any medication, there are side effects. We are primarily concerned about the side effect of Lymphoma and any side effects with regards to fertility in the future. Let me state right now, NO we are not trying to get pregnant right now. However, we have decided that we may want to try for a third child at some point in the future (the distant future as Brandon calls it ;) ). With that being said, those are serious concerns for us. Brandon's doctor immediately called out the fact that there is an increased chance that he could develop Lymphoma, which is a type of cancer. The "c" word scares me, and I really don't want to even think about this part of the whole deal. (If I ignore it, it will go away, right?!) We also don't know how the Humira could affect our trying to conceive another baby one day, or if there could be birth defects that result. The other factor to all of this is that his body could potentially not respond to the medication and we would be back at square one.

Despite these concerns, Brandon has felt a peace about beginning this medication. He is trusting in the wisdom of his medical team and that the Lord holds his future. We may not know what tomorrow looks like, but we know with certainty that the Lord our God is the perfect author of our story. He has written the beautiful pages of our lives and continues to create a most complicated and precious storyline that is one we hope to look back on and be proud of.

Today we received 6 pens of Humira on dry ice on our front doorstep. We were both giddy and a little sweaty-palmed as we opened the contents of what feels like the fate of our future. So today, we decide to document our experience and show the very real side of what life will be like in this home. Brandon will begin his onboarding of Humira with 4 injections today, and will continue with 2 more in 2 weeks and one injection every 2 weeks for the rest of his life. If that sounds as scary as it feels while I'm typing it, it is. While we may view Humira as our lifeline to normalcy and a life without pain and discomfort it is only because it is the object of our attention, and we know that our true hope is in Christ Jesus and that He holds us and loves us through every step.

Enjoy our very first VLOG (that would be a VIDEO blog :) and just a word of caution, it may not be suitable if you're squeamish around needles!):

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.