Coping | IBD | Ostomy
I woke up happy this morning, ready to go to work after last week’s short holiday week . Happy. Not a word I have used to describe myself in a long time. Sometimes I feel like Ulcerative Colitis robbed me of that emotion. For the last two years, I have just been feeling tired. Physically tired. Emotionally tired. Tired of fighting my body. Tired of being the wife that needs to be waited on. Tired of disappointing my kids with another hospital stay that keeps me away from them. Tired of always being the friend with problems. Tired of always being the coworker who had to be out again for a medical leave.
I missed me. I dyed my hair back to my original boring brown. I went through old photo albums and videos to try to remember who I used to be before I got sick. Not just some person at constant war with her body and mind. I wanted to be me again. I was critical, immature, and worried about things that seem like a blessing to worry about today. I took so much for granted.
I spent two years in and out of hospitals. I would have a good day, and then get up from the toilet and see that all to familiar and devastating sight of red blood, back again to haunt me. I felt pain that made me question ending my life for a moment. Physical pain. Emotional pain. Raw. Deep. I felt misunderstood. I just wanted to be okay. I did my makeup everyday and kept up with my fashion blogs. My attempts at being normal again. But inside, I was always struggling. I would come to work and play my part, and then go home and wash off my makeup and lay in bed for hours with a heating pad, because the night time was always the worst.
Medications failed to get me into remission, and I had to get a colectomy within the first few months of my diagnosis. I lost my colon in 6 months. I had no choice. I was septic, literally dying. I thought I mourned this loss, but I didn’t. I wanted to be a warrior and I wanted to fight. I fought hard… through having an ileostomy bag for 7 months, through another surgery to create an internal j pouch that functions as my colon, and a final surgery to remove the ileostomy and start using my j pouch.
I was ready to start over.
Little did I know, UC had other plans. It’s a beast.
I had a lot of problems with my j pouch, which caused more procedures, medical leaves, and some of the worst emotional and physical pain that I have ever experienced.
I couldn’t start over. It was a devastating blow.
But I could keep going. I could choose to have an ileostomy bag again and feel better. Is my life exactly what I want it to be? No. But I can be a mom, wife, friend, teacher with the help of my ostomy. I can be happy. I am happy today. I am not fighting a battle with a set start and end time. I am choosing to just be. Be me with the brown hair. Be me, but be a me who is now grateful, not spiteful for my trials. Be a me who is able to feel deep empathy and appreciate beauty in things I can see that many around me aren’t even stopping to notice or really comprehend. Do I consider myself a fighter? Absolutely. I am so proud of my strength in fighting the storm. But I also see the beauty after the storm now~and that, well that is what makes me “me.”
Kara O’Neill is a 40 year old ostomate from Glastonbuy, CT. She was diagnosed with Ulcerative Colitis at age 38y. Kara is a mother of two, and works as a Special Education Teacher.
Feel free to reach out to her on Instagram: @kaonelly42
I love you so much and am so proud of your courage and determination!
Kara– I am do impressed with your courage and your putting your journey into words. Powerfully effective. I dont have UC but know the feeling of being curled up in bed, with heating pad, to offset the pain. Last year I lost 30 lbs…had no energy. ..could fo nothing. Drs still dont know what’s wrong and UC was one thing being considered. I just take each day I feel OK as a gift. I’ll be hoping for your continued better health, Kara. I used to teach with your Mom.
KARA!!! I absolutely LOVE this post. No words can capture your constant struggle, but these words do you and your fight justice. Great job, my friend. Great job with everything! And by the way, your brown hair looks amazing on you…and so does your bag. xoxoxoxo
I see alot of myself in your words. Thanks for sharing. Struggling through get used to my new pouch. It’s not easy, one day at a time. Sending healing vibes to all.
I can identify with everything you said except I have not yet had any surgeries. Thank you for making me feel like I am not alone
Such horrible pain and misery. I am happy you are now feeling better. Being a Mom is a hard job. I cannot imagine how you made it through the other side. Congrats. I have most of the disease in my rectum. I am a survivor of rectal stage 3 cancer. One day I may have the surgery. I am tested every 3 months for the cancer to reoccur (I can’t even spell it!). I live with that fear, sometimes I just wish I could just get it out of me. Get the surgery over with.
Thank you for sharing.