Decision Time For Crohn’s Treatment and a Thankful Heart

I’ve been trying to write a new post now for a week. I can’t seem to come up with anything interesting to say. Not that this means our life isn’t interesting, I mean, c’mon, we live with two little whirlwinds. Hurricanes I call them… Hurricane Pax and Hurricane Maverick. Fitting, isn’t it?! They’re strong and ferocious little gusts of wind, who blow through a room quickly, starting quietly and ending with a roar, and when they’re gone its as if everything has been tossed in the air and left to fall where it may.

Anyway, our little hurricanes celebrated Halloween (more to come on that later), and its been raining on and off. An important marker in this stage of our lives is that we’ve not visited a hospital in the last week, and we’ve done lots of research on medications and therapies and alternative ways of treating Crohn’s Disease. You’ve been so helpful. We’ve had so many people reach out to us and give us advice, or opinions, and real life experience. Don’t tell Brandon, but I even joined a Crohn’s support forum online. It sounds a little hokey, I admit, but there’s a weird sense of solace in reaching out across the cyber waves to ask someone else going through the same thing, what they would do, or what they did. Even better than that has been all the messages and comments from people we know or people who know us through someone who knows us. We have wrestled with what to do about a long-term treatment plan, and are still trying to make sense of the best course of treatment for us.

This week, I’ve had several moments where I have felt so overwhelmingly blessed, I just have to share. I’ll start with my most recent “moment.”

Just the other day at work, a woman I work with, who just recently had a baby, came back to work for the first day after the birth of her son. Her son is still in the NICU. He’s had 2 surgeries since his birth just 12 short weeks ago. I told my coworker that she looked great – and she did – but I could see the worry in her eyes. I could see the underlying stress of navigating a hospital system, with a precious family member at the center of it. I wanted to reach out and hug her, but was afraid of tipping over that precariously balanced set of emotions, the tears threatening to flow at any moment. Instead, I went back to my desk and carefully crafted an email to her, offering a promise to pray for her, and a listening ear if she needed it. On my way home that day, I cried. I cried for her because I know all too well, that torn feeling she has. The torment of fulfilling only half the duties of wife, and half the duties of mom, and barely able to concentrate on work.

I realized how blessed I am, because I’m not sure how I would handle it if my baby were the one in the hospital. I barely held it together, and my husband is a full-grown man. I have another friend whose baby was recently in the hospital for weeks, and at one point, had a very dim prognosis. These women are heroes.

The Crohn’s Treatment We Chose and Why…

When I think about our journey, I thank God for the brevity of our hospital stays, and for the diagnosis that we have. My husband could be facing something much, much worse. Don’t get me wrong, Crohn’s is no picnic, but we are on the verge of getting this whole thing under control (hopefully!).

We found out that Brandon has not yet formed antibodies to Humira, and since his physician really (really, really, really, really, really) thinks that Remicade is his best chance at getting the Crohn’s symptoms in remission, he has decided to switch to Remicade and his first infusion will be next Monday. Brandon is more than ready to begin, and has been fighting feelings of anxiety because he hasn’t been feeling that great and can already tell that he’s headed back down the road to another blockage if we don’t get it under control quickly. We canNOT keep having pieces of his intestines removed, so you can understand his anxiety. The way his physician put it was a little blunt, and basically scared the mess out of us:

You have to be on medication that will control this. If you don’t, you’ll end up in surgery after surgery, with the eventual result of no intestines, and then you’ll be fed through a tube and never taste food again.

Well ok, then. Sign us up. When do we begin?

But seriously. We begin (well he, obviously, but I’ll be there with him and feel like this is we a “we” thing ya know) with an on-boarding round of infusions, and then we’ll settle in to an every other month infusion schedule… for life. I’m nervous for several reasons:

  1. Is Remicade going to work?
  2. Is Brandon going to respond positively or negatively to the infusions in the hours and days following?
  3. Will┬áthere long-term negative effects on Brandon’s body?
  4. Will we be able to afford this treatment… forever?

I have to say, in my life, there have been a few moments where I’ve felt like what was happening was a little surreal. Like the moment where I realized I was a pastor’s wife. What? Me? **Looks over shoulder** I never dreamed in a million years that I would marry a pastor. Is this the life I’m leading?! Wow! I feel so grateful that the Lord chose to bless me!

Another was that time that I gave birth to a second baby boy and realized that I was a MOM, to TWO LITTLE BOYS. It was so surreal. I remember thinking “I still feel 21 years old. Certainly I can’t be mother of two, can I? These precious children are… MINE?!”

Then there was that time when half a year had passed in a blur and a surgeon came walking into a hospital room (OUR hospital room) to tell us that he had just taken out 18 inches of my husband’s small intestines. Surreal. Is this our life? My husband (MY HUSBAND?!) has a chronic disease. Chronic diseases happen to other people, right? Not us. Bad things like this – like hospital visits and surgeries and injections and infusions – those things always happen to other people… right? I’m still a little in shock that this life we’ve been living, is ours.

But through all of this, all of these surreal moments and quiet cries for help, I’ve realized just how blessed we are. People have given of themselves, to us, more than we deserve and more than we can ever thank them for. They’ve paid for our groceries, fed our family dinner, made student loan payments for us, sent us cards and gifts and flowers. Sweet friends and family have given us memories, help with the boys, and my sweet sister-in-law even refused to let me pay her when she did my hair!

Brandon and I got a phone call this week that I almost can’t believe even happened. What this person said to me was so kind and so unexpected and means so much to us that when I got off the phone, we kind of had this eerie moment where we both agreed that things like that don’t happen to us. We usually do that sort of thing for other people! We feel guilty accepting help from others because we still feel so blessed. God has shown us that even though it doesn’t make sense on paper, He will provide. When we’re busy scrambling to figure out how to make groceries and bills and everything else work out, He’s smiling as He watches the UPS guy literally deliver dinner to our front doorstep.

crohns-disease-treatment

Our God is so good and I can’t help but praise Him for His goodness! My sweet family has been taken care of and so loved on, and even in the midst of uncertainty, I can rest in knowing I serve a great and mighty God.

I can’t wait to share some of the details of the last few weeks with you guys. You might not even believe it!

 

21 thoughts on “Decision Time For Crohn’s Treatment and a Thankful Heart

  1. Oh my, so many ups and downs. I’m so sorry. It sounds like you are on top of things even though the going is rough. Hoping your husband responds well to the treatment.

  2. I don’t know much about Crohn’s disease but that doctor’s words scared me too! hoepfully you can get things under control and avoid further complications!

  3. We are blessed, no matter how surreal some moments may seem. It’s nice to see your positive message and I love that you crafted an e-mail to your co-worker. Very kind of you and I’m sure, appreciated.

  4. I joined everything I could find after learning that my husband had crohn’s! Crohn’s forum was one of my “go to’s” as well as searching the hashtag on IG and joining numerous facebook groups (there are a TON, and some are better than others).I joined a great one call LDN & IBD. Partly, because that is the treatment method we chose, but also because the women in there are some of the most knowledgeable people I’ve seen when it comes to other factors that can affect this condition (I just condition, or syndrome, because I hate calling it a “disease”). They know so much on the extra supplements he needs. Is your husband taking VIT D? If not he needs to be! And since Crohn’s is being proven to NOT be autoimmune, there is HOPE for a cure.. Check into the MAP Vaccine (they have a facebook page). I also follow the SSI Vaccine Trial out of canada as well! There are a TON of new things developing in the crohn’s world.. Keep the faith that you made the right decision! It isn’t easy, but It’s not a death sentence either!

    • Wow! This was so helpful (and encouraging!). Thank you! I will definitely look into the supplements and the MAP vaccine. Thanks so much for your help!

  5. I know what you mean about having times when life feels surreal. Happens to me a lot… I wonder “is this me? How did I get here.” Then I realize that all of these things have built me into the person I am today. And I love that person.

  6. I think it is great that you are seeing the blessing and beauty in life. Also love when docs are blunt about prognosis and treatment. Sometimes I really dislike when they walk around the topic

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