Crohn’s Doesn’t Care

IMG_2095Chronic disease is hard. That’s one of those statements that everyone knows, but I just need to say it out loud. It’s especially hard on the patient, but it’s also hard on everyone else in “ripple effect” distance of the patient. ***Side note, I actually typed “victim” instead of patient a minute ago and had to delete it because that wasn’t what I meant, but it’s basically how I feel.

Crohn’s is such a mean disease. It doesn’t care if it’s Sunday night with your work week ahead, or Friday afternoon with your whole weekend planned. It doesn’t care if it’s Christmas or Easter or your birthday or your anniversary. It doesn’t care if you have 3 kids and a wife and the yard needs to be mowed.

Crohn’s doesn’t care that you have to take time off work for doctors appointments and lab work and infusions and hospital stays. So much so, that you can’t take off work for the stuff that matters, like your kid’s field trip or career day or vacation with your family. Vacation days with a chronic illness are spent 2 and 3 days at a time, at your local hospital, hooked up to IVs, having scans and other tests, and fighting through the pain and nausea, not at the beach or in the mountains.

Crohn’s doesn’t care if you’re tired and weary from the endless cycle of not eating and being sick. It doesn’t care that you couldn’t sleep last night because you were throwing up all night, or rolling around in pain for hours. It doesn’t care how many pills you have to take each day, or how many hours you sit in an infusion chair. It doesn’t care that you have to decline certain foods – foods you used to really love – because they’ll surely send you over the edge.

Crohn’s doesn’t care that all your strength is used to put on a brave front for everyone else, and that when you get home, its all you can do to climb into the recliner for the night. It doesn’t care that you order food and push it around your plate at dinner so it looks like you’re enjoying yourself with everyone else. It doesn’t care if you’re about to eat your favorite meal, or if you just did.

Crohn’s doesn’t care that you’re emotionally exhausted. It doesn’t care that you’re worried about the medical bills. It doesn’t care that you bite back tears in front of your wife, or if you can’t hold them back in front of your mom. It doesn’t care that your wife tries to quickly swipe tears away so she looks brave for you and it doesn’t care that your kids ask if you’re in the hospital again.

Crohn’s doesn’t care that its picking away at all the things that make life easier. It doesn’t care that each spouse struggles with dealing with the disease. It doesn’t care that feeling bad makes you short and curt and snippy with the ones you love most. It doesn’t care that your wife is struggling to hold it all together. It doesn’t care that your wife yells a little too much because she’s a little too stressed. It doesn’t care that she sometimes gets in the car just to shut the door and scream and cry and beg God for mercy for her husband. It doesn’t care that they desperately long and hope for healing. It doesn’t care that they feel like they’ve taxed all their friendships and relationships asking for favors and accepting help. It doesn’t care that your wife brings your 8 week old to the hospital to visit you or that the nurses bring graham crackers and juice and popsicles for your boys.

Crohn’s shows no mercy and is horribly unpredictable. It is strong and persistent and ruthless. It is totally and utterly exhausting. It is belligerent and cunning and attacks when you least expect it to. It doesn’t care how many times it humbles you.

Crohn’s just doesn’t care.

Surgery Eve (Again)

I think I’ve written a post before with that same title… or it at least felt a little familiar anyway.

Tomorrow morning, Brandon will have surgery… again. His surgeon came to see him tonight and told him that he watched a ton of footage from the capsule camera, mostly of the spot where he has a stricture in his small intestine. The surgeon will go in, retrieve the camera, and cut out the bad section of intestines.

I had someone ask me earlier if this was a pretty minor procedure.

No.

NO, it most certainly is not MINOR. They can’t go through his nose or just numb him a little and then give him some gingerale and he will be fine.

No. The anesthesiologist will put him under, the surgeon will cut through his skin and abdominal wall, and then squeeze feet of his intestines until he finds where the camera is stuck, then examine the small intestine for other signs of blockage, CUT OUT THE BAD PART, reconnect the ends of the small intestines together, and then sew up my husband’s stomach. The surgery can take anywhere from 4-7 hours, the better part of the day, and then his recovery will be weeks long. I will bring him soup and help him set up shop downstairs since he won’t be able to climb stairs for awhile. He will be restricted to lifting less than 5lbs for about a month, and it will be tedious. The days will be long, and the path frustrating.

No, it is not a minor procedure.

Please, please join with me in praying for a SMOOTH, SUCCESSFUL procedure. Please pray that this is his last surgery. Please pray that his Crohn’s will go into remission and we can have a reprieve from this life filled with infusions and hospital stays and clinic visits and bloodwork and CT scans and surgeries. Please pray that he is a gracious patient and that I am a gracious nurse. I am tired and emotional and he is tired of feeling bad and irritable. We are ready to enjoy life with one another and not life with each other and Crohns.

Crohns, I hope you get the boot tomorrow. You have been disruptive long enough. I am claiming an end to this and hope you’ll join me in begging God for the same.

I will post updates in the morning and as I can throughout the day. If you recall, last year we prayed on the “fives” and you’re welcome to join me again in doing that.

Thank you for all the sweet messages. I will continue to read them to Brandon until he is taken back for surgery, so keep them coming. :) We love you all.

Hospital Update

Friends, we have received many messages and follow up questions about how Brandon is doing. THANK YOU. You have been so sweet to us and we rest a little easier knowing that an army of friends is bringing our concerns to the Lord Almighty. You are wonderful and we could not do life without you.

Here’s an update on his condition:

Today is day 3 in this hospital stay and we are beyond frustrated. When Brandon presented to the ER Tuesday night, he specifically talked with the doctors about not having a CT scan because he’s had so many in the past year, and it’s really not good for a patient to have so much radiation. We’re wanting to minimize our risks and potential side effects (because we’re already seeing negative outcomes from some of the treatments intended to “help”) and the doctors agreed it was in his best interest to not have another CT scan. They did an xray to rule out perforation and rupture and then he sat. For 2 whole days. Not eating and in pain and battling waves of intense nausea. Last night GI medicine finally came in and announced that they did not believe he had an obstruction and that he was going to have a CT scan shortly. Needless to say, we were upset that GI Surgery had not yet been consulted (we had been told they had been called earlier in the day and waited the whole day to see them) and that his GI doctors were making decisions opposite what had already been discussed.

Late last night, Brandon had a CT scan and GI maintains that he does not have an obstruction, but Internal Medicine (who is currently running point on his care) gets to decide and they agree with Brandon’s surgeon, that he likely DOES have a mechanical obstruction. Brandon’s surgeon (from his previous 2 resection surgeries) came by to see him earlier this afternoon and told us that the CT scan is not showing an obstruction in the sense that GI is thinking. His intestinal tract is NOT closed off completely. You might be thinking, so why is he in the hospital? Why is he having pain? What is causing all the nausea? Here is your medical lesson for the day (I learned something new today myself!!):

Your intestinal wall is made up of muscle, and food is moved through the tract by little squeezing motions, like contractions, that pulse the food on down the path. Well where Brandon had surgery, his intestinal wall has formed scar tissue and basically (this is the real dumbed down version coming from me, the furthest thing from a medical doctor, so just hear me out) that part of his intestines has become “paralyzed.” It doesn’t do that squeezing motion anymore because its stiff with scar tissue and the parts above that area have to work doubly hard and it’s gotten to the point that its causing Brandon extreme amounts of pain. Think about when you have a stomach ache with cramps, how it kind of comes in waves. The pain is like that for him, only it’s not just when he has a stomachache. It gets to be whenever he eats. Whenever food is trying to go down his intestinal tract. Think about that. Think about all the times throughout the day you eat. Every day. How awful.

The plan now is to have Brandon do a procedure called a capsule endoscopy. Basically, he will swallow a camera in the shape of a pill and it will take pictures of his intestines on the inside. His doctor has been talking about this procedure for half a year now, so it is somewhat a relief to know that will finally happen.

The risks with normal capsule endoscopy are minimal, but in Brandon’s case, the doctor thinks the capsule will get stuck (in the part of the intestinal tract that is thickened and not moving!) and that his surgeon will have to go in and retrieve it. At which time, they might as well go ahead and take out the blockage! His surgeon came in today and told us that Brandon is on the schedule for surgery for Wednesday. He is currently doing a bowel prep (which is no fun at all, seriously.) and will swallow the capsule tomorrow.

I am feeling so many emotions right now, I’m not sure I know how to even describe it all. I spent a large portion of time between 3:30-5:30am last night begging God to heal Brandon and to give his doctors undeniable wisdom and clarity. I am so distraught over how all of this affects Brandon. There’s the obvious, of course, that he deals with a lot each and every day physically. He is tough and on any given day, you’d probably never know anything is wrong, but I know. Because I see it. Up close and personal. It’s raw and its real, and it truly is amazing that he can go to work every day, parent our children every day, and love me gently as his wife, while being in pain, or nauseas, or uncomfortable, or tired, or anxious, or all of the above.

This hospitalization has felt different for me, I think because I have truly battled feeling overwhelmed with it all. I’d like to think I can balance work, owning a business, parenting 2 small children and being pregnant with a third gracefully, but to be honest, I’m juggling about 17 things right now and I feel like all of them are on the floor, having been dropped, by me. I’m so tired. And so worried I won’t be able to handle it all. And I’m worried. I’m worried about my husband, about how he’s dealing with all of the same emotions, but being trapped, unable to do anything about it all, in his hospital room. I’m sad that he’s feeling so crappy, and I’m worried that he’s worried. I hate that he’s been through so much, and I hate that I’m not more understanding at times. That I snap back when he’s feeling bad, and hold a grudge when he’s not himself.

As usual, you can pray for us specifically, because I believe there is power in taking specific requests to the throne of Almighty God:

For minimal pain and nausea and discomfort for Brandon these next few days

That his mind would be eased and he would not be anxious

That the team of doctors would truly look at his individual case and determine the best course of action for HIM

That there would be clear answers from the capsule procedure

That the boys would not worry

That he could avoid surgery if possible

That we could determine an effective treatment plan so that we don’t end up here again in the next few months

That I can be productive and focused at work early next week so that I won’t feel as guilty about being away the rest of the week to be with Brandon

That his recovery would be swift and without complications

That he would FEEL GOOD

Thank you for praying with us and for us. We love you all and are so grateful for your friendship and your diligence in showing us what community really is all about. I will keep you posted as I can and appreciate your words of encouragement more than I can say. This man is my world, and today, on our tenth wedding anniversary, the best gift I can receive is knowing you’re all praying for him. <3

(Read more about Brandon’s Crohn’s story here.)

Post Discharge

Today marks 2 weeks since I was discharged from the hospital (the second time). I was hospitalized 21 days out of the month of January. That. Is. Crazy.

Since my discharge, Brandon was discharged 2 days later on high dose steroids and we’re both rocking the low-residue healing diet. We’ve been joking that we’re a match made in heaven! How funny is that?! But on a serious note, I gained a whole new appreciation for what Brandon has been through. This is no walk in the park. And I will heal and most likely never deal with this again. Brandon has to face a lifetime of this. Oh, I hurt for him just knowing that pain like that lies ahead of him potentially.

“What’s the plan?”, you ask… Well, the plan for me is to heal – rest, low-residue diet for a few weeks, no heavy lifting, no working out for 3 months, and no running, ever. In a few weeks I will be off all medication and slowly incorporating more “regular” foods (read- VEGGIES!!!) back into my diet, and hopefully back to work soon. I’ve watched my fair share of Netflix and I’m ready to get back to normal… Now, when I’m pulling my hair out in a few months because we’re crazy busy like “normal”, just remind me that I was tired of watching tv and that I wanted this.

The plan for Brandon is to continue his steroid taper (which is working to open up the partial intestinal blockage that landed him in the hospital) in hopes that we can get the inflammation down to the point that the Remicade can work. And the Remicade dosage will be increased at his next infusion. We have 2 options available to us: increase the dosage, or increase the frequency at which the infusions occur. Our doctor has put us on the track to increase his dosage first and we will see how that plays out. I’m still hopeful that the Remicade will work, and that we can get this nasty Crohn’s under control. In case you’re just joining us on this journey, Brandon has a very aggressive form of stricturing Crohn’s. When the Crohn’s is active, that’s when the scar tissue forms. We need to pray that we can get the active Crohn’s to settle down and go into remission. Remission can last for years and that is my prayer. That we can live in remission and free from worry.

Forgive my lack of posts the last two weeks. It’s not like I haven’t had the time… I’ve had plenty of time, but I’ve been in a bit of a haze from the pain medication still and have been doing a lot of reflecting. I’ve got another post in the works but I don’t want to overdo it on this one.

For now, though, I have found myself so incredibly grateful and embracing just how blessed we are. You might be wondering how I can feel this way, when I just spent 3 weeks in the hospital and with Brandon’s health history, but let me put it in perspective… things could be so much worse. Sure, we started out 2016 with 2 hospitalizations, but neither of us has cancer, and both of our children are healthy! I could be writing post after post about how one of my sons is sick, or how one of us has a terminal illness… but I’m not. I’m writing about little storms in the Delk’s lives and how each of you has helped us weather them.

This past Sunday at church, our pastor showed a video, an NFL football Sunday video. I cried through the entire thing. You might find that odd, considering it was a video of NFL football players for Super Bowl Sunday, but I found myself relating immediately to Thomas Davis, linebacker for the Carolina Panthers, and the tears just wouldn’t stop. Call me crazy, but I felt like the video was just for me, on my first Sunday back at church, and I felt God clearly speaking to me.

I am so blessed and I feel like I’m bursting at the seams to tell everyone. If you’ve got 25 minutes to watch the video, you won’t regret it, but if you can only spare a few minutes, listen to Thomas Davis’ story (minutes 1-5) and Trent Dilfer’s story (minutes 15-21), just keep the tissues handy. I’d love to hear your reactions to the video.

I have a big ole gratefulness post but I’ll save that for later since this one is already long enough. Thanks for praying for us during this time, friends. We value each of you and I’ve said it before, but I’ll say it again, we’re convinced we have the best family and friends in the world.

 

The Unthinkable

The unthinkable has occurred. Brandon is in the hospital.

Brandon hasn’t been feeling good for a few weeks now and I finally got him to contact his doctor’s office yesterday and they immediately set him up for a CT scan yesterday after work. He was miserable all day and couldn’t eat and by the time he got to the imaging center he was so nauseated and in so much pain that he was having a hard time drinking the contrast solution.

He didn’t make it to CT. He began getting violently ill and was rushed to the Emergency Room by ambulance. He has been in the Emergency Room all night and been medicated for pain and nausea and had a CT scan done there.

The CT scan showed a partial obstruction at what looks like the spot where his intestines were stitched back together, which is a common occurrence. The good news at this point is that the surgeon doesn’t think he needs to operate right now. What they plan to do yet I’m not sure. The bad news is that the looming question in our minds may be true…

Is the Remicade not working?

Brandon was admitted to the hospital last night but there are no beds available so they are still in the ER. Please pray that a room opens up soon so he can be more comfortable.

This is a disaster right now. I can’t even believe my life. I was hiding last night (sorry if you messaged and I didn’t respond) and just tucked myself away because I was having such a hard time. Please pray with us. Things could be worse, and I know that, but this is very difficult. We are having to fully rely on God right now, because nothing seems to make sense. I’m clinging to His promises.

Trust in the Lord with all your heart
    and lean not on your own understanding;
in all your ways submit to him,
    and he will direct your paths. Proverbs 3:5-6

I’ll update as I can. Thank you, beautiful support system, your encouragement means the world to me right now.

More on Brandon’s story.

More on my story.

Yes, this is crazy.

Thankful

In the spirit of Thanksgiving, I thought it would only be appropriate if I shared a little of my thankful heart. I would have posted this on Thanksgiving Day, except I’ve been writing and re-writing this blog post in my head over and over for a week, and have sat down to write it, gotten up in frustration and walked away because I can’t seem to get out the words I want to. A thankful post seems like such an important post, ya know, and I want to convey all my gratitude in just the right way.

When you have a pivotal life event happen (or several in our case) you tend to get reflective and analyze the good, the bad, and the ugly. You pick out the little wins, and you write them down, memorize them, and thank God for them. You savor those breaths of fresh air, and remember just how sweet they taste.

What I’m grateful for creates a list so long, you’d be here for days reading it, but I’ll try to share just some of the highlights.

This year, I’m thankful for the two sweet boys who call me Mommy. I’ve watched Paxton grow and learn over the past several months more than I ever thought possible. He’s like a sponge – soaking up all that school has to offer. He randomly spouts out new facts, or things he’s learned and I’m just amazed. I’m absolutely convinced that he’ll be one day running for President, or on stage leading thousands of people in worship. He’s got personality just oozing out of him, and I see so much potential. Maverick can count to 10… well sort of. Sometimes. It’s the cutest thing. He sings “Itsy Spider” and “Twinkle Star” and “Rock a Baby Bumblebee”. Precious. Seriously precious. And ever since we put up our Christmas tree, each time he walks into the living room he puffs up his little chest and proudly proclaims “I do dat!” while he shoves one chubby little pointer finger through the air toward the tree, that he did indeed help decorate. Be still my heart :)

I’m thankful for family who have sacrificed in so many ways to help us. I’ve made more than one middle-of-the-night phone call, and more than one of them has made the long trek to UNC Hospitals to be with us, toting things we need, or bringing the boys to visit their daddy. I’m thankful for family who have worked hard to make the times not scarred by hospital visits wonderful, strikingly normal, and filled with beautiful memories.

I’ve sat with my mother-in-law several sleepless nights in the Emergency Room, and am struck by her continual strength. She’s been through a lot, especially with her first-born son, my sweet miracle husband. I know when she looks at him she sees God’s grace and unending love. She sees a beautiful miracle of life that so many told her at first would never come to be. She trusted in the Lord almost 32 years ago and He spoke to her softly, whispering “I give life, and I will give it abundantly!” Brandon was born with spina bifida and defied all odds when he learned to walk, talk, and conquer life as any other child. Every time I see the mangled scar on the back of his neck, I whisper a silent prayer of thanks because I’m part of a miracle… My life intertwined with a miracle when our paths crossed and I became part of that story. I don’t take that lightly and I think that’s why I know – I know – in my heart of hearts that the Lord has great and mighty plans for Brandon. I think we’ve only barely scratched the surface to what the Lord intends to do in and through Brandon, and quite honestly I feel so blessed to be along for the ride!

I’m thankful for my sweet sister-in-laws. I have 3 of them and I love each of them. They have each been so helpful, so giving, and so sweet to us through this past {crazy} year. Each in their own way, they have blessed us, and I hope they know how much they mean to me. I adore my sister-in-laws and count them as some of my closest friends, not out of obligation, but because I truly love each of them. I couldn’t have picked better ones if I tried!!

I’m thankful for my mom, my brother and my step-dad. I think I have the strongest, bravest family ever. My sweet mama has suffered her fair share of trials and has emerged from each one, stronger than before, and more beautiful to me. I know this isn’t a Mother’s Day post, and I’m trying to keep this short so I don’t weep like a little baby all over my laptop, but I adore my mama. If I can be half as wonderful as my mama, I will be a good woman, and someone to be proud of. She thinks of all these unexpected ways to bless us – ways I never would have even asked or thought of – and does it so quietly and lovingly, without ever once expecting a single thing in return. Like I’ve always said, she convinces me over and over she wants the burnt piece so I can have the best part of the pie. What a wonderful person.

Deryl has been so selfless and giving to us. He drops everything to drive down here with my mama and help with the boys, or to support her and us while she’s helping us. He endures hospital visits and sends sweet and thoughtful gifts for Brandon. I cannot say how blessed Brandon and I feel to have Deryl in our lives.

And my brother… my brother is like me, but better, and with all the best qualities in a person… and taller of course. But seriously, he’s much more selfless than I, more giving than I, and far more humble than the average person. He’s also really funny, super attentive, and one of the most thoughtful people I know. He’s got his own family to provide for, yet he constantly checks in on us and I know he would do anything for us.

I’m thankful for a good job… no, a great job. Its a great place to work, and I have wonderful coworkers. I’ve been able to be with my husband when he needed me, be nurse to my boys when they are sick, and attend school functions and conferences when need be. I’ve learned more in the last year and a half than I have in a long time and I love that I work in a place that values that. I say it all the time, but I feel really, really fortunate to have the job that I do.

I’m thankful for our journey. Some people have said that we’ve handled this whole season with such grace, but honestly, I don’t know how we’ve acted, I just feel blessed that we’ve been dealt the hand we have. If we weren’t going through this trial, we would not have experienced the many blessings that the Lord has bestowed on us over the last few years. I’ve gotten to see the Lord provide for us in mysterious ways. Ways that don’t add up on paper, and don’t seem real when you say them out loud. I’ve gotten to sit quietly in the dark, listening for His still voice, and feel Him take control. I’ve watched friends and family act out their commitments of love for us and seen the true meaning of community. I’ve had to depend on the Lord, and that can be so hard, especially when I think I can do it all myself!

I’m thankful for so many things – the roof over our heads, the cars we drive, the food we eat, the things we have, the church we’re part of, the jobs we work, etc – but I’m think I’m most thankful for the way the Lord has taken care of us, and the friends and family we have along with us for the ride.

I remember sitting in my house one night a few months ago, in the midst of my son’s fifth birthday party, surrounded by 60 of our closest family and friends, and thinking, “this is what it means to be blessed.” To have family come running in from all directions, alongside us, to lock arms and keep pace with us. They ran the grill at the party (all the parties actually), made the cupcakes, made food, served food, loved on our guests, built and lent party props, etc. And I sat there, surrounded by them all, watching them love on our family. We are loved. So loved. And deeply, beautifully blessed.

For that, I am thankful, so very, very thankful.

 

Update After Remicade Infusion #1

Mini update after Remicade infusion numero uno:

first-remicade-infusion

Many of you have asked how Brandon’s first Remicade infusion went on Monday. I think it went about as well as it could go! Praise the Lord!

His appointment was in the afternoon (strategically scheduled during the latest appointment slot they offer so he could work most of the day and then be able to go home right after) and since I was in South Carolina for my uncle’s funeral, Brandon’s mom went with him. He was given an iv and the nurse programmed the iv to infuse the proper amounts at certain intervals, in the amount that was right for his body weight. The infusion took about 2 hours and then he was required to stay for another 30 minutes so that they could monitor him for signs of allergic or adverse reactions.

The nurses all recommended that he bring a laptop/ipad/book or something else to do while he’s there, since he isn’t able to do anything else but sit while he’s being infused. When the infusion was complete and he had waited the half hour, he was allowed to leave and we were told that most serious adverse reactions occur during infusions 2 or 3 in the onboarding process.

He has his second round of Remicade in 2 weeks, and then 4 weeks after that will be the third round and last in the onboarding process before he will begin his every-other-month treatments.

I know you’re probably wanting to know… does he feel any different/better?

YES!

Of course, I’ve been the annoying wife with my questions:

“How do you feel? Have you gone to the bathroom? Does your stomach hurt? Are you tired? Do you feel better? Do you feel different? Are you breathing OK? Do your ears hang low? Do they wobble to and fro? Can you tie them in a knot? Can you tie them in a bow?”

OK, OK, just kidding! I didn’t ask if his ears hang low but I should have! All the other questions I’ve asked though… approximately 35 times each day. Anyway, when I asked if he felt any better he said “I don’t want to jinx it, but I think I do.”

How awesome is that?!

I know what you’re thinking, because I was thinking it too… Is it all in his head? Is it more mental than anything else?

Maybe. But that’s OK. Because even if it is partially mental, that helps anyway with relieving some of the stress. Because this dude has been anxious. I hope he doesn’t mind me telling you (we’ve been pretty real with yall so far, so why stop now, huh?!) but he has been. He’s had pain and that has skyrocketed the anxiety. He’s been (over)analzying every little feeling, every little twinge, and when the pain started, he really (semi)freaked out. SO, I think that when he went for his Remicade infusion, just knowing that he was on medication was a HUGE relief to him. It was like he could finally let out that breath…

“I’m gonna be OK. The Remicade is going to control the Crohn’s.”

THANK YOU for praying for him (and me!) and for checking in with us over these last few days. So far so good and we’ll keep you posted on how he does with the next round!

Take THAT Crohn’s! #boom

If you missed some of our Crohn’s disease story, you can catch up here.

 

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 there 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.

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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!

 

Crohn’s Awareness

Someone shared a Crohn’s story with me today, that has gone viral over the last week. The story describes a young man who has Crohn’s disease and his insisting that Crohn’s needs more awareness.

I was moved by his story for several reasons. It resonates with me. With us. Outwardly, Brandon may look fine to you. But what you may not see is that we always sit near the back, him on the end, at church, sports events, concerts, and other crowded events. Why? Because Crohn’s is a cruel, unpredictable disease that rears its ugly head anywhere.

We choose to drive our own vehicle if we’re going somewhere with anyone. Why? So we can have control over pulling over if we need to take a bathroom break.

He makes food choices, good and bad, that he sometimes agonizes over. Until this past weekend, Brandon hadn’t had a salad for months. He loves salad, but sometimes salad doesn’t love him.

What you may not see, are all the clinic visits, and the routine labwork done. When you’re watching your favorite tv show at night, we’re talking about costly injections and infusions and lab results and googling support groups and poring over Crohn’s forums.

On the outside, you see a fun, loving, handsome, able-bodied Brandon. You might not see the anxiety, or the heart-wrenching confessions of his fears.

Another reason this moved me, is this is what we’re afraid of Brandon’s future looking like. Did you know there is such a thing as people surviving by nutrition via feeding tube and never.eating.again? In a society that is so centered around food, this seems to be one of the cruelest things that could happen. Maybe I’m being shallow, but I want my husband to live a vibrant, full life, complete with food.

Thanks to us, you probably now know about Crohn’s disease, if you didn’t before. We are proud to be part of the movement in Crohn’s awareness, but sad that we have no choice but to be along for the ride.

Read this man’s story and let me reiterate and emphasize, Crohn’s is a cruel and chronic condition, and whenever you see Brandon, even if he looks fine, please continue to pray for him, because the invisible illness is very real and very present.

You can read more about our Crohn’s journey here.

A Week of Ups and Downs

This week was a bit of a roller coaster. I love roller coasters. Usually. Most of the time. If it involves Disney World. Not if it involves my emotions, or my family.

We went into the week really excited about our family photoshoot with Captured Love Photography. We had tried to plan a shoot before Brandon went into the hospital the first time this fall, but our plans were a little derailed and then after that, with surgery looming, we decided to put it on the back burner, because it wasn’t a priority financially. I’ll write more about this later but, for now, just know that we were able to schedule a date for a shoot, and the fabulous Erica was able to capture these beautiful moments of our family.

These two boys are our world.

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I love that almost 10 years later, we still giggle together.

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This baby makes my soul happy…

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Oh, only the heartbeat of this girl each day…

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I’ll share more of these gems in another post (they’re really all so good that I am restraining myself from Delk Family Photo Overload for you!) but wanted to share more of our roller coaster week with you.

Tuesday, Brandon went for his follow up GI Surgery appointment and was cleared to begin working again, with the very strong caution to remember that he was only barely 3 weeks post major abdominal surgery. Wednesday, my brave and handsome husband woke to his early alarm, got dressed, and hustled out the door to work. He was exhausted by the end of the day, but managed to make it the full work day.

Thursday, he got up and went back to work again, and ended up having to work late. I was really worried he was overdoing it, so soon after returning to work. During the day, he called UNC and was trying to figure out when to begin his Humira injections, as well as his other injection (the low-dose chemo medication). They arranged for him to come in for a follow up appointment the next day and suggested that his treatment plan would be changing.

Friday,during my lunch break, I drove to Target and Brandon called as he was getting out of his doctor’s appointment. He sounded so discouraged. I knew immediately that his appointment had gone in a different direction than we were hoping. He then proceeded to tell me that his GI doctor wants him to begin Remicade infusions, a drug called 6-MP, and another drug. The Remicade infusions would take the place of the Humira injections, and the 6-MP is another type of low-dose chemotherapy, and the other medication he wants to put Brandon on is for the visceral pain, which is basically like phantom pain, the pain that an amputee might feel on a limb they no longer have. Brandon has been worried over the last 2 weeks because he has felt pain, and thought that he may have another obstruction. Honestly, he was almost panicked over having this pain, and his doctor explained it this way: Brandon’s nerves in his intestines have only felt pain for so long, that that is the only thing his nerves know how to feel. This third medication is supposed to “reset” his nerves, so that they learn how to feel normally again.

Allow me to interject for a moment here… my husband has been in such intense pain for so long, that all his nerves know how to feel… is pain?! Even after the problem is gone, all his body knows is that it has been fighting itself. This thought alone is enough to make me weep. And weep I did. I put myself on mute, listening to my sweet husband recount his doctor’s appointment and then his feelings about it all, during my lunch break, sitting in the Target parking lot.

I listened to him tell me that the Remicade infusions take about 4 hours to infuse, and that he would have to take a half day off of work each time in order to go to the hospital to sit for these infusions. I wept – you know, the big ugly-cry kind of weeping – watching happy people go in and out of Target, and thinking about how sad I was at the thought that my strong, brave, handsome husband would have to strap himself into a hospital chair every other month to sit, weak and tired and defeated, to have a drug infused, on the off chance that it might work. Of course I couldn’t let him know how upset I was, and I had already used 7 Chick fil a napkins to blow my nose and wipe what was left of my makeup off my face. He asked me what I thought, and all I could get out was that I didn’t think I wanted to go into Target. I put the car in reverse, and drove back to work.

We are so discouraged. I’m discouraged for several reasons…

When Brandon was first put on Humira we were told that these types of medications were “use it or lose it” drugs. Meaning, once you get off of one of the medications, your body begins to build up antibodies to it and you can no longer use it because your body will reject it. The surgeon told us after his surgery 3 weeks ago that he was encouraged because it looks like the Humira was working.

So, let’s pause for a minute and talk about this…

Brandon has surgery in August of 2014. Was put on medication for long-term treatment in December of 2014. In January of 2014 Brandon couldn’t take that medication any longer because it made him feel so bad (extreme fatigue and nausea so bad it would wake him up in the middle of the night, and driving for work was absolutely miserable). Fast forward to the beginning of May when Brandon had to go to UNC for another scan (almost ending up in surgery then!) and was immediately put on Humira, and methotrexate was introduced at the end of July. The way we see it, Brandon was not on medication to manage the active Crohn’s for 9 months post his first bowel resection, and therefore the disease had time to manifest and cause another obstruction, then when he was put on Humira (and another round of steroids at the same time, too) it was able to control the obstruction until September. Since his surgeon saw no other places of active crohn’s while he was in surgery, we think the Humira WAS WORKING.

What we can’t figure out is why his GI doc wants to switch medications, and have us potentially lose that medication forever (remember, the antibodies? ^Read above again if you aren’t following). Plus, giving himself injections every Friday night isn’t the most fun thing in the world to do, but it sure beats having to take a half day off of work each time, to go and sit for 4 hours at a hospital, find a parking spot in the crazy parking deck (which he will have to pay for each time), AND pay hospital bills each time in addition to the new cost of this drug, which we were told could be anywhere from $6k-20k per infusion. Let that sink in for just a second. Yep, she told us it could cost up to TWENTY THOUSAND DOLLARS per infusion. C-R-A-Z-Y. Seriously.Crazy.

At this point I’m not even worried about the financial aspect of it all (the nurse is working on insurance and assistance programs yada yada yada, but our God can do anything and $20k is child’s play to him). I’m more concerned about switching medications and the lifestyle change (read: INCONVENIENCE), and how he’ll feel afterwards. Everything I’ve read so far indicates that he will be extremely fatigued the day he has an infusion, and lots of patients have said they get feverish/chills and some have to take Benedryl or other allergy medication to combat the side effects. UGH.

This is such a long post, and I’m sorry if I’m boring you, but I’m writing it for a purpose. I’d love for you to help us share this post in hopes that we get some feedback from patients with Crohn’s Disease that may have been through a similar experience. If you want to help us, please share this post with your friends to see if anyone can give us any advice. Our preference is for him to stay on the Humira and methotrexate and start the medication for the visceral pain.

I’m afraid that if we switch to Remicade and it doesn’t work, then we will have lost two of the biggest/best drugs out there for Crohns because he won’t be able to go back to Humira either.

I want his physician to see him not as just a small intestine that he has to control inflammation in, but as someone’s husband, someone’s son, someone’s father. My heart breaks at how discouraged he has been since his appointment, and I am trying not to show how anxious I am over it all. Tensions are running high and on the way home Friday night, Brandon was going to go to CVS to pick up 2 of the new medications, but I kind of panicked and suggested that we wait to talk with his physician again on Monday, because I just feel so unsettled about this course of treatment.

Maybe we’re all just a little tired, and ready to put this all behind us, but we really need some real life advice. If you can help us spread the word and get some advice from people who have experience with Remicade infusions, Humira injections, or Crohns in general, we would really appreciate it.