Surgery + becoming an ostomate

Midnights become my afternoons

Taylor I felt that.

Hi, everyone! I am back and I no longer have a rectum. Or a good part of my large intestine. But I also hopefully no longer have cancer. I’m getting a Natera blood test to confirm if I’m NED or not Monday. I can’t tell if it’s the nerves from that or the stomach virus currently destroying me that’s making me nauseous.

I got home from the hospital one week ago today. I wish I could say how smooth and nice the transition has been but I’ve been nothing but honest in this blog and I want to continue to do so. It’s such a mental trip going back and reading my past blogs and remembering how I felt in those moments so I want to remain true to myself and continue to do that.

The day I went in for surgery, I truly felt at peace with the situation. I wasn’t scared, or worried, it was weird. I even said to my surgeon in preop—I should be nervous shouldn’t I? But I trusted him with literally my life and my body. I trusted my nurses. I believed they would take care of me and they did. Waking up in recovery was wild. I woke up and started fighting the tube before they took it out so the second time I woke up once it was out my throat was so sore. Both my hands had IV instead of just one when I fell asleep. My recovery nurse gave me a sip of water and it was as if that water was from the tit of Jesus himself. It was the best sip of water I’ve had in my entire life. I’m going to hell for saying that on Easter weeekend. Sorry Gramma Phyllis.

My time in the hospital was so comfortable (pain meds, am I right?) and just having round the clock care and someone there to reassure you things were normal was invaluable. The only complaint was my husband making me belly laugh with 4 incisions all over my stomach. It was so painful lol. Since coming home, I have hourly anxiety attacks about one thing or another. I’m always worried about something being wrong with my stoma bag. I’ve never been a hypochondriac but I’m starting to feel like one when it comes to this new friend that lives on my stomach. Normally they have a home health nurse come out and change them with you and help you since it’s such a scary and new thing but of course as per my journey, insurance wouldn’t cover it. you’re on your own kid, best of luck.

This first week home has been hell. I’ve been in so much pain. Once my incision pain went down, allllll of my nerves woke up and then started the nerve pain. I also have the constant feeling as though I need to go number 2 even though that’s physically impossible. I didn’t realize phantom poop pains was a normal thing with ostomy patients until I was googling “stomach virus + ilostomy” and was reading someone’s blogs and they mentioned it. It’s the most unnerving thing and sometimes I catch my self absent mindedly going to the bathroom when I feel it…only to realize that’s not going to do anything right now lol.

Having a stomach virus with a bag is a weird experience. I empty my bag and it’s immediately filled back up. Ostomy patients are already at severe risk normally of being dehydrated so now I have to double my liquid intake (it was already at 96oz per day…) and pray I don’t get anymore dehydrated than I am now.

I know it’s a time for celebration and I should just be thankful for my life (which i am!) but life with a bag is impossibly hard and anxiety inducing for me. None of my clothes work with it. Any clothes that are comfortable with it make me look like a slob. I feel myself slipping into a place that I definitely do not want to be but I already reached out to my PCM and got on anxiety medication to help hopefully manage a bit of it. I’m so nervous to get hit hard in the face with real life starting Monday with Quinn going back to school, maxy starts back at skateboarding, and our schedules are almost back in full swing. It may help me not think about this constantly though. But the bag life is so all consuming, I’m scared on how it will fit into my normal life once it’s back in full swing. My littles spent their spring break in AZ with Mimi and nana and their cousins and aunts. I’ve been extremely jealous and almost made adam drive me there but riding in a car is so uncomfortable theres no way I would have made th trip lol.

Thank you to everyone who’s sent well wishes, meals, donations, anything. I appreciate every single thing and it doesn’t go unnoticed. Sorry if none of this makes sense. I fell asleep at like 5:30 and woke up at 12:30 and have to empty my bag every 10 mins so I thought it was as good time as ever to dump my stream of consciousness into a blog and publish it lol.