Get to know Amy – again (Part 2)

Read part 1 here

Hello my fab Pelican readers!

I hope this blog post finds you well & if not, I’m sending huge hugs & gentle encouragement your way. Things will get better.

Last time, I did a “Get To Know Me – Again” post and at the end of that post, said how next time I would tell you a little about how I’ve coped since stoma surgery and how I am now.

Here goes…

Early days post 2011 stoma surgery

The first day after surgery, I felt amazing. My medical team said that it’s common for patients to feel almost unbelievably good the day after surgery since the body almost celebrates being free from the active disease & parts that were making you ill. It was the first day, for as long as I can remember, that I felt I had half a chance at living my life as a human being without being bound to my illness. Pain was an issue, of course, and I felt like I’d been run over by a bus, but the hopelessness cloud had finally started to lift & I could see the idea of a future starting to shine on the horizon.

(Right image credit: Comfizz)

Days two to five were the worst days of my recovery, without a doubt. It was hard to get on top of my pain & I spent a lot of time not really having a clue what was going on due to the cocktail of medication I was on. I developed an ileus (where the bowel goes to sleep) so had a lot of sickness. I experienced hallucinations, had no concept of time & felt very suicidal. It’s worth just noting here that as with every experience, especially with Bowel Disease & surgery, that everyone is different, so just because I experienced this, it doesn’t mean everyone will. However, it’s also important to understand that because of the major trauma your body has been through, it’s no surprise you may feel pretty rough. My Mum was such a rock in this period especially (through all of it, to be honest) & is a big reason I made it through.

The months following stoma surgery

I made it home 6 days after stoma surgery and definitely took my recovery very steadily. I had stitches from around my stoma and in my bum out around 3 weeks post-surgery and slowly, but surely, I felt stronger day by day. There were days where it was near impossible, but the prospect of a new life ahead kept me going.

My appetite took quite a while to develop. I’d say it was 3 or 4 months after surgery where I could manage a reasonable sized meal. I quickly felt full and my body hadn’t been used to food for as long as I can remember, so building a positive relationship with food took time.

I went to my first gig with my Mum 3 months after stoma surgery and made sure there was somewhere I could sit, along with having a sports drink and sweets with me. It was super tiring but it was such an amazing feeling to be able to attend a gig, especially not having to panic about toilets and urgency.

10 years post-surgery

9th August 2021 marked 10 years since surgery.

Life with a chronic illness and stoma isn’t a walk in the park, but it’s a walk in the park I can actually navigate because of my stoma. I am still breathing thanks to my hospital team and my stoma.

I have experienced so many things I could have only dreamed of pre-surgery. I’ve been on road trips, started singing lessons & performed live, enjoyed many a countryside walk, been able to hold down a job, been well enough to get a dog, been able to look forward to meals out, worked with stoma companies and thankfully been able to help so many and raise stoma awareness…the list is endless.

The main things I struggle with now are fatigue and when my stoma suddenly decides it’s going to take a dislike to food I’ve previously been okay with for no rhyme or reason. I go through phases like this, and because I have a narrowing behind my stoma, it’s probably no surprise. I dilate (widen) my own stoma at home every other day to stop the narrowing closing up more. Energy levels can be so hard to balance but I’m a lot better now at listening to my body, even if sometimes it’s mentally tough to slow things down.

Amy

Amy

@ibdwarriorprincess