Our Home with Hounds

An Interview with My Mom: Crohn’s Awareness

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Oh hi there Monday! This week is Crohn’s & Colitis Awareness week, so I’d like to make it the theme for the week and help raise a little awareness on the topic. Especially considering I’ve been quite impacted by Crohn’s, both my mom & her twin sister have it, as well as my younger sister. I’ll be sharing interviews this week from my Mom, Dad, and Sister to shed a little light on what it has been like to live with Crohn’s so close. Up first is an interview with my Mom! (her responses will be in italics below)
Hi Ma!

Hi Rechelle.

How would you describe Crohn’s Disease?

Its the shits …in every way, every aspect. Pun intended. I’ve spent too much of my life trying to hide it, letting it take my life. I made it out up on top too though.

I asked this question in each interview with my family members and it was really interesting to see how they differed! My mom didn’t want to go into much detail because she felt Crohn’s didn’t deserve the credit, you’ll see what my dad & sister said later this week.

You were first diagnosed when you were about 25, along with your twin sister, what was that like? Did life change?
I would say Ronda was diagnosed when she was 20, I remember she was sick for 2 years before being diagnosed, almost to the point of having a hysterectomy. The doctor had told her genetically we were the same, and I would have it too but I was in denial. I was scared for Ronda, not knowing what it was. She was so so so sick with it, I remember being in the hospital and praying I’d never get it. 
It was another 5 years before I was diagnosed. We’ve talked a lot and as young girls we had A LOT of stomach aches & illness, I think it was Crohn’s which often goes diagnosed like it did with Ronda. I was so scared, she was sick, tiny and in pain. I hated that people said it was just stomach ache. 26 years ago, how dumb those comments were. I was angry because no one believes you’re sick and then you believe them too. I hid a lot of the illness. We had each other but were scared for each other and didn’t know how to help. It is a very lonely disease. I was sick like immediately, like right now. Fast & hard. They found I had a stricture in my colon, no medications will fix that, we knew it would have to be surgically removed at some point.

Around the time of diagnosis.

What has treatment been like for you over the years?
As a young person diagnosed I should have let my doctor treat me. My meds would work and so then I would go off them. It would be a cycle, ignorance of thinking I was well I guess. Remicade worked great for a year but they found a stricture and knew it would only be put at bay. Then I had a small bowel resection and went back to Remicade for a while. Everything has side effects. Its the achy joints, feeling old. When I had I high flare up I was on steroids, Prednisone, my heart would race, I got the moon face. It changed my looks and that is frustrating, but I needed it to live and keep things functioning.

My Mom, Sister, & Aunt. My Crohnies <3

You raised 2 kids and ran an in-home daycare for many years, how did you make it work so seemingly smooth? Well smooth to me at least, but I suspect others didn’t notice either.
My mom & dad and husband. A support system, they were always there. Every day. My parents helped with meals for the daycare, they made things easier for me so I could succeed.
I really only recall one time when your illness was really bad, you were hospitalized for an extended time and had surgery to remove some of your bowels. I don’t remember being terrified at the time but looking back it does seem scary. What was that time like for you?

Yes I was always scared. Who was going to take care of you, my girls? I didn’t want to be sick, I wanted to be like everyone else. I was in serious denial. I spent a lot of timing thinking I wasn’t sick. I felt like I couldn’t be sick, didn’t have time for it. But I was terrified when I was at my worst.

I still remember I had a young surgeon for my bowel resection. I told my doctors I wanted to get through my daughter’s first communion and the other one’s birthday before scheduling surgery. (I only made it through the first communion, spent Raelyn’s 8th birthday in the hospital) The young intern/surgeon came in my room the night before surgery, I was crying late at night and he came in. It was his first lead surgery. He held my hand that night and I told him he had to make sure I woke up because I had 2 little girls. Before surgery as I was rolled into the OR he whispered to me it would be all right. I’ll always remember that.

The day after my first communion my mom was hospitalized and had her small bowel resection 3 days later…

How have you learned and grown from your experience with Crohn’s?

I’ve learned that I have Crohn’s disease. There is no denying it, changing it, it is who I am. They make these meds for a reason, to be taken. It is important to find a good doctor, you have to believe yourself, but they have to believe you too. It is important to educate yourself about the treatments & consult on those with your doctor.

What advice would you give to others with chronic illnesses?
Try not to deny it. You can live with it. There will be good days and bad days. Find your support system and you’ll get through.

Family camping trip cut short because mom was sick and ended up hospitalized.

While I do not live with an invisible disease I’ve lived with you long enough to see the judgment you receive when you have to rush to the bathroom, or can’t eat the food offered, or stay home because you’re sick even though it may not look like you are. What would you say to those people? What would you like people without chronic illnesses to know?
People look at you like its just a stomach ache and to get over it. It’s not. It is worse than labor pains, just excruciating. 
I’m sure you wish it was just a stomach ache.
I hate when you have to run in the bathroom and someone looks down on you with disgust. Women can be very harsh and judgmental for being in a bathroom for 20 minutes. Listen we all poop. 
Amen!

Just because it is invisible doesn’t mean it isn’t real. And please don’t give me advice on how some oils, acupuncture, herbs, medicines, or other diet is going to heal me.

What was it like for you when your youngest daughter, my little sister, was diagnosed with Crohn’s 2 years ago?
I was devastated. It still makes me mad. If I could go back and make her not have Crohn’s I so would. I wish it could just be me sick and not her.
As you might imagine this was a pretty emotional interview but I am so glad my family was brave enough to share their stories. Stay tuned and check back in on Wednesday & Friday for more interviews with my family!

Comments

  1. MOM says

    Thank you for taking the time to do this Rechelle! It’s hard to believe that I’ve lived 20 plus years with this disease. I’m certain I may not have done as well after that surgery if I didn’t have you and your sister to care for. Knowing that my girls needed me gave all the reason to fight this ugly disease. #girlswithguts

    Reply

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