Reflecting on Resilience - One Year Post-Surgery

Yesterday I couldn't figure out why I was so agitated by things that normally don't faze 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 ileorectal anastomosis 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 and 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.
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Here's hoping March 30, 2024 brings a much better year-in-review for you. Crossing my fingers.

Thank you, I really appreciate that

Thank you so much for sharing these thoughts about your anniversary. 

Although our experiences may not be precisely the same, many of the thoughts that accompany the journey are similar enough to prompt pour own reminiscences.

you sharing has brought meaning to my morning.

 

Best wishes

Bill

I think that's one reason communities like this are so important. While our stories/circumstances aren't exactly the same, there are many similarities. Knowing others who can relate and share in the journey with us helps one not to feel alone. It's so important to be able to see how others have come out on the other end of their grief journeys, and then help walk alongside those still processing theirs.

I hope you are having a nice Saturday.

Jodie

Words of Encouragement from Ostomy Advocates I Hollister

Hi CCD, happy stomaversary and many more. And if I can make a suggestion, when I'm having an off day and don't feel like eating, I usually make a fruit smoothie and that seems to get me past the blahs.

Crappy... great post! I bet you feel better already getting all that off your chest! It is great having groups like this for us to share common ground.

Now I need to go make one of Ron's fruit smoothies, as his post got me hungry!

;O)

Ron, what's your favorite? And does it require a full-size blender? My husband rearranged the kitchen since he started doing more of the cooking this past year, and it is no longer short girl-friendly where he put a lot of appliances, and I can't remember if we have one. I've killed a couple of the individual serving size blenders, but I think I have one that is unscathed.

Glad you're hungry.

Someone suggested I start journaling to get my feelings out and also be able to look back eventually and be able to see progress. I don't think it was you that suggested it, but I'm not sure I'd give you credit for it even if it was after some of the ideas you've come up with for me.

Geez.....that's gratitude for ya! But thanks.......it was an awesome smoothie!!

Nope.......not me. I didn't suggest you keep a journal. Those work both ways.......you can see your progress.......or lack thereof. Oh, come on........you love those ideas I cooked up for you (no pun intended).........you're just jealous you didn't think of them first. It's ok......you can say you did and take credit for them. I'm the unassuming type. The important thing is you get better.

;O)

Your Friendly Neighborhood Spiderman

Yep, jealous is the word choice I was thinking of... And no... Those ideas all the credit can stay with you

Bit late but may the next 12 months and longer be good to you and your health. XX

Hi CCD, I don't have a favorite. I just use what we have in the house: bananas, strawberries, applesauce, raspberries, lactose-free milk, some cinnamon, a little honey, salt, fruit juice, all in a single-size blender from Walmart, about 20. It makes about 16 oz. that I'll sip on all day along with my glass of ice water.

Never too late to encourage someone, thank you

I google people with ileostomies.

It's an incredible list. Some are...

Eisenhower

Napoleon

Babe Zaharias

Loretta Young

Lots of athletes and movie stars

We're not alone.

I'm really curious about the Napoleon one because medical care back then. I wonder what he would have used for a bag?

Hey Crap-A-Roonie,

Napoleon didn't have an ostomy......it was a silly rumor based on how he held his hand over that part of this abdomen. His autopsy said nothing of an ostomy or any bowel issues.....he died of a combination of TB and being poisoned by his idiot doctors by mistake. I think if he did have an ostomy........he would have died earlier from that based on the hygienic practices of the day!Those rumors said he use a goat's bladder as an ostomy bag......held in place by his hand. C'mon.....really?

;O)

Well said, J!