Coping | IBD | Ostomy
I remember a time a couple months after surgery when I was sitting on my bathroom floor crying. I remember feeling hopeless. This wasn’t the life I signed up for… My kids deserved a better mom…. My husband deserved a way better wife. I wanted to be better, but I just couldn’t, my body was too sick, too tired.
My husband, who’s a Rockstar, found me on the bathroom floor that day, and got me to come to terms with the fact that I needed professional help. Within a few days, I was at an appointment with my primary care provider, again in tears, talking about all the things that I hated about my life, all those things that were out of my control. I didn’t want to, but I started taking a med, one that is known to work for depression and anxiety. It wasn’t a miracle drug, it took a couple of weeks to start feeling like myself again. But eventually, I remembered everything about myself that I loved, and how good my life really was.
It was around this time that I started to search for support groups and people to talk to that really knew what I was going thru. The first place I went was the internet, and there weren’t any local options, but this is where I stumbled across Girls with Guts. I explored the website and was excited to learn about their retreats- which I have yet to attend, stupid COVID-19! I signed up for the PenPal Program, and thru letters back and forth met my stoma sister Angela. We don’t write monthly, we try, but we are always sending each other cards and tokens just when the other seems to need it most. We have never met in person, I hope someday we do, but I already feel like I “know” her.
Then I found the blog, I have always loved creative and journal writing. I connected with Kristen, who was the blog coordinator at the time. She told me to let my creative juices flow and send her a draft, I was so proud of that first blog. I offered to write again, and again, and now I get to help others with their blogging! I love reading what everyone has to say about their journey and perspective.
When I first got my stoma, it was my goal to keep it a secret and hide it as much as possible. I wore a thick spandex belt to hold it tight to my stomach, and loose clothing. I doused myself with perfume, because of course I just knew, everyone could smell the bag (even though they really couldn’t). I starved myself for periods of time because I was worried about the ability to interrupt my workday to empty my bag. Then I realized something, those were all temporary solutions for a problem that is not temporary. At this point, it’s not even really a “problem”. It’s my life. I have a barbie butt, which can not be reversed, so I better figure out a way to come to terms with this stoma being here. It took time, and was not always linear. Some days I was like an unstoppable force- I was advocating loudly for myself as a patient, writing blogs, and speaking publicly. Other days, I couldn’t get out of bed, and if I did, I found myself right back there a few hours later.
So, this is what I have discovered. I don’t always have to be a warrior fighting for the better days. That’s exhausting-even more than just living every day with Crohn’s. It’s ok to have bad days. It’s ok to cry. It’s ok to scream. It’s ok to be pissed off. Chronic illness can be cruel. But if you are reading this right now you have found Girls with Guts, and we’re here for you every step of the way.
Charlotte Rensberger is a 37 year old permanent ostomate from Michigan. She has been battling Inflammatory Bowel Disease for 20+ years. Charlotte and her husband Cliff have been married for the past 15 years, and have two crazy children. Charlotte works as a Pediatric Nurse Practitioner. In her spare time she enjoys baking, arts, and furniture rehab. She has been with Girls With Guts for over 2 years.
If you have a story to share, please reach out to us. We would love to hear what you have to say. Your experience could help someone else get thru their day, and you don’t even know it yet.
I feel like you are talking directly to, and only to me. I am a few months out of surgery and feel exactly the same way. I cry every day! I don’t want to live this life. As a little girl I didn’t say gee I hope I grow up to have cancer and a permanent stoma to sh!t out of my stomach! My kids need a healthy, better mom than this. My husband needs a healthy, better wife than this.
Just want you to know. Your story touched me. And I too need to come to terms with the fact that this is my life and it isn’t going to change unless I make it change. Thank you for posting!