Sunday, April 5, 2009

When partner becomes caregiver

Our Wedding: View of the tent from across the pond.

Us on our wedding day, sweaty and happy.

I married Matt last June. Although a humid 98 degrees (and an outside wedding), it was perfect. I wore a tea-length light green vintage-style dress and our ceremony and reception were at my in-laws home, a woodsy oasis with a pond and endless greenery with bright swatches of flowers. Our wedding was at dusk, and as the reception commenced, the twinkle lights from the trees and our tent danced on their pond as guests moseyed around the property sipping sangria. Lanterns adorned the tables, and children weaved in and out of the tent and grounds with glow sticks as jazz and big band hummed through the speakers. It was simple and intimate, and the last thing on my mind was my Crohn's Disease. Matt and I left for honeymoon in San Francisco and the Napa and Sonoma wine region two days later, ready to start our life together as husband and wife.

I was healthier then. So healthy (and foolish, in fact) that I was not taking my maintenance medication, Pentasa, regularly. In the fall I suffered for a month from abdomen pain and night sweats until I was admitted to the hospital in mid-November with a baseball-sized abscess in my pelvic region. This was my first serious bout with Crohn's disease, and for those who read the blog, you know the disease is still very much active.

Since the fall and the beginning of my flare-up, I have become much less active and much more emotionally fragile. After my hospitalization, my mother stayed with me for a week as nurses came to the house showing me how to property administer my IV antibiotics and TPN (total parenteral nutrition) into my PICC (peripherally inserted central catheter) line. She learned with me and prepared my jello and broths (I now abhor both). After spending his days in the hospital, Matt returned to work.

Although no longer in that situation, having Crohn's is an emotionally scarring experience, and not just for the patient. Every evening after work is a touch-and-go experience. Many days I am fine and we laugh and watch television in the evenings down on our over-sized couch. We'll walk our dog, Penny, around the neighborhood and discuss our days (although they're never really that interesting). Penny will wait patiently for fallen food scraps as Matt or I make dinner, and then around 11 I'll retreat to bed as he stays up late into the night coding or playing his video game of the moment.

Some days after work I retreat right to bed, and only come down for a belly-friendly dinner (breakfast foods are often good for this). I lay in bed reading or on the computer, and Matt spends a lot of his evening with me in bed. He hates it up there. He finds the bed uncomfortable and likes his big-screen tv in the living room, complete with a Nintendo Wii, Playstation, and XBox (boys will be boys!). He'll complain sometimes, but despite his protests, he often still lays with me and I can regularly trick him into giving me back rubs, too (although he swears he's "developing arthritis in his fingers" due to this).

Matt has been very much involved in my Crohn's treatment. He knows as much about Crohn's as I do, accompanies me whenever I ask to appointments, and above all, has acted as my personal caregiver in the last several months. When in bed, and in pain, he retrieves my medications. And water. Or a book. Or the laptop. It is never-ending. I was diagnosed with Crohn's early in our relationship and he never once thought it "gross" or made any sideways comments about the condition (and I would of booted him out the door if he did!).

When I'm in pain, he's there. When I'm happy and making medical strides, he takes just as much joy in those small steps. Just this week he layed in bed with me and watched Gossip Girl. Yes, he bitched and complained endlessly, and teased me about my choice in entertainment (this is coming from a guy who spends his free time playing Grand Theft Auto, though), but he stayed at my side through that "tedious" hour.

And maybe it goes without saying our relationship has been particularly chaste lately. When you're chronically tired and in discomfort "I'm not in the mood" takes on dizzying new heights, and when the title of this post -- "When partner becomes caregiver" -- becomes a reality. Loss off physical intimacy is just another victim of the disease, and gosh darnit, we're newlyweds! But of course, he never complains.

This post is dedicated to Matt and all our significant others who go through the emotional ups and downs of this disease as well, and still have the love and compassion to make us laugh even when we're mad at the world, self-pitying, and in pain. Thank you.


  1. *sigh* What a great post. It's sad in a lot of ways, but also heartwarming to acknowledge that the disease affects those around us too, and the value of a strong, caring partner is infinite.

    I had an abdominal abscess too! Though mine was ping-pong ball sized so you beat me there! But the recovery after having that surgery to drain it is long and frustrating. My relationship was pretty new at the time (4 or 5 months) so I was particularly scared of him running off. But he stood by me, and was a real shoulder for me. *tears up* I second your dedication to all the supportive partners out there! :)

    Oh, and don't knock video games just yet. When your mobility is drastically reduced like we experience sometimes, being able to race, play sports or go adventuring in a virtual world can be a valuable distraction. I also bet Matt would get a HUGE kick out of teaching you to play some of his game with him! (*cough* a nice reciprocation for all those back rubs *laughs*) *sigh* I love my Xbox... *grin*

    Anyway, stay strong- you'll feel better eventually and you'll be able to make up for lost time. ;)

  2. Hi Bright Side,

    I just went and read your older posts when you were recovering from the abscess - oh dear! Sounds incredibly trying.

    Mine was not drainable, b/c they couldn't even get to it; it was deep in there and bowel was wrapped around it (lovely!). So I had a gazillion antibiotics for a total of 2 1/2 months. I'm going to post soon, but I just had a CT Scan and the abscess is still there, albeit very small now, but still not resolved. My pain, since tapering off the steroid Entocort, has increased dramatically the last few days. All of this means I am going in for surgery. It's with a heavy heart I do so - I don't want to be opening up a can of worms, here - but a decision has to be made. I'm laying here on Percocet and just in so much pain. So, that Xbox may come in handy very soon!!! Surgery is scheduled for 4/24. (My favorite part so far of the Xbox is when I created my Kathryn character. I could do that all day.) And yes, I am trying to be more open to them; just the other day I played "Scene It" ...some movie game. I hope all is well with you!!

    We are both very fortunate to have supportive significant others!! So perhaps I'll show my gratitude a bit more more games. Blech!!


  3. Hello!

    I found your blog and wanted to let you know about the Oley Foundation, in case TPN becomes a regular part of your life. (Hopefully not!)

    We offer free information and peer support for people on home tube or IV feeding. Check out our website at

    If you have any questions or would like to be introduced to a member with Crohn's disease, feel free to contact me.

    Warm regards,
    Roslyn Dahl
    Oley Foundation Staff Member
    (800) 776-OLEY