Well my life has pretty much been turned on its head this past week. My poor, sweet husband was admitted to the hospital yesterday because of a severe Crohn’s Disease flare.
The pic on the left was taken tonight, the pic on the right was yesterday….
My sweet baby kept asking Kev, “You okay da da?” “You okay?” It was precious and heartbreaking at the same time. My tender 8 year old has been in tears every time we go visit Kev. He doesn’t like to see him in the hospital and he says he hates to “leave dad all by himself.”
It’s been rough on all of us.
Kev was diagnosed with Crohn’s about 12 or 13 years ago. He experienced a horrific flare about 10 years ago and it was so scary. He ended up getting a terrible bacterial infection (C. Diff) on top of it and the doctor didn’t catch it right at first. Sooooo, the bacterial infection got really, really bad and poor Kev was deathly ill.
Seriously, I shudder when I think about it.
He got toxic megacolon (a complication of C. Diff) and they said if he didn’t start to improve within 24 hours they would have to remove his colon. Toxic megacolon can be fatal.
Soooo, he was in the hospital 9 days, lost about 50 pounds within a month and was terribly, terribly sick. I remember on the day I was supposed to take him home, he stood up and his heart rate plummeted and he almost passed out because he was so weak. I was scared to take him home! They ended up not letting me take him home until the next day and I was glad.
Oh, and when I did take him home they gave me some prescriptions to fill for him, one of which was Vancomycin. I didn’t realize at the time that Vancomycin was the mother of all antibiotics. When I went to fill the prescription, the pharmacy rep looked at me in horror. He wasn’t even sure if they carried it because it’s so powerful and so expensive. I ended up having to go to three separate pharmacies to fill it because none of them could fill the entire script.
My poor husband was in really bad shape. I found some old pictures to share with you guys from 10 years ago. I think these were taken within a day or two of him coming home (Kev told me I could share them)…
He fell asleep on the recliner and my sweet daughter who was 5 years old at the time put her stuffed animals and dolls on him. 🙁 The pic on the right just shows how sickly he was. His clothes just hung on him, his face was so pale and he had dark circles under his eyes.
That was definitely one of the hardest trials I’ve ever gone through. It was especially scary at the time because I had three small children (ages 2, 5 and 7), we lived in New Hampshire far away from both of our families (thankfully we had a lot of incredible friends though!) and we lived on 2 and 1/2 acres with a mega long driveway. I remember stressing about how in the world I would be able to take care of everything all by myself!
I could tell you all so many more stories about that experience, but I think I’ll leave it at that. I’m so happy to say that after that huge mega flare, his Crohn’s went into a deep remission and he’s been mostly symptom free and disease free since then! We’ve been so grateful. After seeing him so sick, I worried he would battle that disease relentlessly for the rest of his life.
Anyway, I tell you guys about that story to give some context to his current situation.
He started having very minor symptoms earlier this year. It really wasn’t a big deal AT ALL, but it just didn’t go away. Kev and I think that when he had ACL surgery in August (I can’t remember if I told you guys about that or not), the inflammation and stress from the surgery eventually put him into a full flare. That’s just our guess; we’re obviously not doctors!
After his ACL surgery he started to heal and improve very well AND then it just seemed like his knee got worse and he started to backtrack a bit with his healing. At the same time his Crohn’s symptoms started to increase. It could just be a coincidence, but we’re thinking they were related.
Anyway, he started getting worse a couple of weeks ago and then he got really bad last weekend. His doctor had him on some steroids and other meds and they just weren’t helping him. On Monday and Tuesday of this week, he went downhill fast and I started having horrific flashbacks of his situation 10 years ago. I could see the color starting to drain from his face, dark circles appearing and he lost about 15 pounds in a matter of days. Needless to say, I’ve been a bundle of nerves all week and have just been worried sick about him.
I’ve really tried to remain calm and think positive thoughts, but MAN, it’s so tough to see him get so so sick so quickly! I couldn’t help but think of a bunch of terrible worst-case scenario thoughts. I just felt so helpless.
SO, yesterday morning I told him I thought he should go to the hospital. He agreed. We both hoped he could get better at home, but realized he couldn’t. Soooo, we called his doc to let him know and then took Kev to the ER. They pumped him full of a bunch of fluids, intravenous steroids and pain meds. He actually looked markedly better to me within hours.
He looked even better tonight and I’m very happy ’bout that! I’m also so grateful he’s not dealing with a bacterial infection on top of it. Although he’s very sick right now, he is not even close to how sick he was 10 years ago. I’m so grateful I have that past experience to compare it to because it helps to keep me positive.
I don’t know when he’ll be able to come home yet. Honestly I don’t want him to come home until I know he is stable and well! His doctor has been talking about starting him on Remicade (an infusion type drug) and we have mixed emotions about that. It’s a drug that lowers the immune system and is supposed to heal him and keep him in remission. I’m grateful for drugs like that, but apparently once you start that drug you need to keep taking it the rest of your life because if you quit, your body will form antibodies that will make it not work for you again.
That kind of freaks me out, so we’re hoping he’ll have a different option. We’ll see.
Anyway, I have to say that I’m a lot more prepared emotionally to handle this trial this time through. When Kev was so sick last time I had a friend tell me about a particularly hard time she went through. She went on to tell me, “Life will get better.” “It always does.” I hung onto her words at the time and have reflected on them many times since then.
In the past 10 years we’ve been through many hard, gut-wrenching trials. It seems like when I go through a trial it becomes all consuming and I seriously can’t imagine life ever returning to normal.
BUT, it has and it does!
AND, I’m stronger because of it. I’m grateful for hard times because they teach me humility, strength, gratitude, patience and faith.
I’ve also been trying to train my brain to not just jump to the worst-case scenario, but rather just take it a day at a time, hope for the best and handle the worst-case scenarios when and if they come.
That’s hard to do, by the way.
I’ve been praying a lot (of course) and I know I lot of our friends and family have been praying and fasting for us as well. I can definitely feel the blessings from those prayers. It’s almost tangible. A few days ago, I was worried sick, full of fear, my stomach was in knots and I just felt tense and on the verge of tears constantly.
Today and yesterday, I feel calm. I feel peace. I just have a sense that whatever happens, everything will be okay. I really don’t feel fear at all. It’s quite miraculous. I definitely believe in the power of prayer and fasting. I’ve felt the undeniable effects in my life many, many times.
Well, I have to go to bed. I know that if I allow myself to get sleep deprived right now, I will implode. I will keep y’all posted. I’m sorry this post isn’t motivational or healthy….it’s just real life.
I’ll try to post again soon! I love you all! xoxo
Have you heard of Carrots ‘n Cake blog? She has UC and blogs often about treatment. Here’s one from earlier in the year, but if you look around you can find more stuff: http://carrotsncake.com/2016/02/remicade-stopped-working-why-im-eating-a-more-plant-based-diet.html
I have heard of her blog, but I hadn’t read it in a long time. I checked out that post you referenced and read a few more on her site and it really helped. Thank you so much!!
My thoughts and prayers are with your family. I want to reach through the computer and give you the biggest hug.
Thank you so much Michelle. That is so sweet of you! It’s been such a hard time for us, but I’m hoping the worst is behind us.
Oh, poor Kev! Those pictures from 10 years ago are alarming. I’m glad you recognized the symptoms got him into the ER when you did.
Take care of YOU, please. Accept help whenever it’s offered – with meals, housekeeping, driving kids around. And you may have to ask for support, too. You can do it. Stay strong, sista!
Thank you so much Beth! I’m so grateful he’s not as sick as he was 10 years ago, but it’s been so scary to see him so sick again. I have been trying to relax as much as I can. I’ve had a lot of friends help us out and I’ve been so grateful! Thanks so much for your support!
Thinking of you both and praying that everything will be all right.
Thank you so much Lisa. That means a lot. I miss and love you guys!
Prayers for your family. You are all in our thoughts and prayers. Thank you for sharing your testimony and your faith. You’re inspiring!
Thanks so much Marcie!! I love you guys!! <3
Sending prayers and positive thoughts your way. I have a family member and a friend who are sick at the moment and it is so hard seeing them like that. I feel so helpless. Hang in there !
Thank you Karen! Yes, health problems make me feel so helpless. I’m so grateful for modern medicine, doctors and faith.
I’m so glad things are looking better! I don’t know much about Crohns other than what I’ve learned by reading on Carrot’s ‘n Cake, but she does get Remicade infusions, I think pretty regularly. Maybe you should shoot her a message?
Praying for you, your sweetheart and family.
I have read Carrots ‘n cake blog a little bit, but hadn’t read it in a while. I looked up some of her posts about what she’s gone through and it helped a lot. Thank you so much!
Prayers, postive thoughts and well wishes to Kev.
Thank you so much Char. <3
Prayers for you & your sweet family! You will be in our thoughts & prayers daily!
Thank you so so much Hannah. That means so much to me! <3