Our Home with Hounds

Crohn’s Awareness: An Interview with My Dad

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This week is dedicated to Crohn’s & Colitis Awareness across the nation and I’m keeping it as my theme for my posts! On Monday I shared an interview with my Mom, she was diagnosed at an young age along with her twin sister and has lived with Crohn’s my entire life while raising kids, maintaining a job, and well just enjoying life. Today I want to turn to the person who supported her throughout, my Dad. I thought it would be good to see a perspective from someone who is deeply impacted by the disease as well, though a little more indirectly. (his responses are in italics below)

Hey Dad!
Hi Chelle.
How would you describe Crohn’s Disease?
Evasive. Debilitating. Humiliating. Overpowering/overbearing a little. Controlling to an extent, depending how much the person lets it.

I asked everyone this question and I found my Dad’s answers to be the most honest. It might seem brutal but I think those words are real. I found that my mom and sister didn’t want to let Crohn’s take any more from their lives than it already has so they down played it a little maybe.

What was it like for you when mom was diagnosed?
Long time ago. I think when your Ma got it I was like okay, lets just fix it and move on. Seeing Ronda (her sister) have surgery and easily recover and it was over mostly for her. I had a misunderstanding of how extreme the symptoms can be and vary from each person. Your mom was dead set against surgery but when she got sick her weight would plummet. I’ve seen it half a dozen times at least, just 15 lbs instantly. I misunderstood that first initial diagnosis/out come of surgery and thought we’d move on fine but I’ve had to learn how we can live with it. 
What is it like to care for someone with a chronic illness, how have you learned to provide care differently through the years?

Identify the symptoms and flags. It can be an ungodly and helpless feeling seeing her wadded up in a ball and there is nothing I can do for her. I tried to let her have her space so as to not aggravate her and just let her heal. One of hardest things I’ve ever seen, completely miserable to watch. Terrible, just terrible.

I really only remember the one time mom was majorly hospitalized for an extended time and had surgery to remove some of her bowels, I don’t recall being incredibly terrified but looking back that does scare me. What was that experience like for you?
It wasn’t super scary for me. I was more this is what has got to happen. We’re gonna get it done, move on, and deal with what comes after. I didn’t feel like I had the luxury to be concerned with your mom having to handle what she was handling. We had to get through it to get to the next part to see what that was going to be. I was more focused than anything. I wanted to be there with her all the time but get home so you girls had some normalcy getting ready for school in morning, eat breakfast, get your hair done. Your mom just wanted out of that hospital so bad.
I remember you often making sure mom was taking her medications, going to the ER when and if necessary, and you attended her doctors appointments with her. What advice would you give someone who is caring for a loved one with a chronic illness like Crohn’s?

Be aware, be their advocate. You can’t force them to do anything but I would check. Its making sure you’re paying attention to their signs.

What was it like for you when your youngest daughter, my sister, was diagnosed with Crohn’s a couple years ago?
I get pretty upset myself. We used to hear it was hereditary, no its not. yes it is, then no again. I thought god forbid my girls to get it or grand kids. Raelyn ate so many tums, I often wonder why didn’t I make the connection, she was too young to have heartburn like that. I was not happy with myself. I cried. That was one of my biggest fears after seeing what your mom went through, I never wanted it for either of you.
If you haven’t already go over here to read the post from Monday, an interview with my mom, and come back on Friday to hear from my sister who was more recently diagnosed!

Comments

  2. Judith Boyer-Morris says

    Rechelle, Thank you for your continuing narrative about how Crohn’s Disease has impacted your family. In reading your dad’s comments, I started thinking about how difficult it has been for everyone in your family. A sense of guilt for having the disease, passing the disease to a child, being a spouse and father who is trying to do everything he can to make things better and being a Crohn free family member who, through no fault of your own, carrying your own emotions when see you how your family is impacted.

    Reply

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