Yesterday I couldn't figure out why I was so agitated by things that normally don't phase me. I'd only eaten a piece of toast up to that point (Between food aversion and gastroparesis me and food are trying to find a way to like each other again). So I thought it was low blood sugar or if my potassium drops I start feeling “off”. Then I was sitting at my daughter's choir concert last night and I felt my phone vibrate and I looked at the screen and noticed it was March 30th. Obviously, my brain knew it was March 30th or I wouldn't have been at the concert on the right day, but all these memories hit me at once of March 30 2022. It was one year ago that I found out you could live without a colon and after tests from September 2021-March 2022 and trying and failing every single medicine to try to give my colon more time, a colectomy was the only option I had left. I didn't google anything because what happened to me they are still trying to figure out in research. My motility Dr at Cleveland Clinic was collaborating with other doctors at Mayo Clinic on my test results. Once I was told I'd have an ileostomy and an ileorectalanastamosis would be formed and a reversal would eventually be the goal, I started doing more research. I remember seeing the word ‘ostomate' for the first time and the thought of joining that club overwhelmed me. I was looking at pictures and videos online of people with different types of ostomies, and I started crying because I thought it would look like a penis coming out of my abdomen wall. After the first surgery I was refusing to look at my stoma until they tricked me one day and I looked and realized it wasn't so bad and that piece of intestine was a part of me. If I could sum up the year in one word it would be: loss. Loss of an organ that was 1.5ft longer than it should have been taking up way too much real estate space in my body, loss of a summer, loss of time with my kids and vacation, loss of control of Marilyn Monroe (my stoma) during bag changes, loss of the child we were so close to bring home from Colombia, loss of friends who were so busy with their lives while I was recovering, loss of control over how my body looked with all the new scars. I had planned not to work this year so I could be bonding with the child we were adopting…who isn't here for reasons ironically not related to my colon. But then I think about what I've gained…I got really good at bag changes and wound care, so a new skill. My colorectal surgeon said her PA wanted to hire me after interacting with me in the hospital when I told them about all the different mocktails I was going to make once they let me drink. Even though my appetite isn't great, I can eat more than I used to and not get sick. I've connected with so many new people in the ostomy community I would have never ‘met' otherwise. I've been able to travel again and see family/friends I'd been too sick to be able to visit. My physical healing overall, has been faster than the mental/emotional healing. I got clearance to walk one dog at a time. The shoulder surgeon lectured me on being mindful if I try to walk 2 and use the arm of the shoulder he reconstructed. It's like he knows my history of acting before thinking the idea all the way through. I've always been adaptable, but this stretched me and broke me in ways I didn't think were possible.
One comment I've heard over & over that rubs me the wrong way is that I am so lucky/blessed/fortunate my husband didn't leave me. I actually did tell my husband he could leave and there would be no hard feelings (ha) because this wasn't what he signed up for, we were only married for 2 years when I first started getting sick. People don't say that to a woman with breast cancer about being lucky their partner didn't leave them. It reminds me there is still a stigma and lack of representation of the different types of ostomies, the conditions behind the ostomies, general lack of understanding from the public of what life is like for people with any of the conditions and how we fully live our new normal.
I've been listening to a song ‘Brighter Days' on repeat for a while and going into my multiple surgeries last year. It's rainy here today, but I hold onto hope that brighter days are coming.
