Year Five: Stoma Life
What I’ve Learnt and Achieve in the Last Twelve Months with my Ostomy
Year Five with Pricilla started with hernia repair surgery. So technically, Pricilla lasted for four days into her fifth year and then she got reborn – aka, she was refashioned!
I won’t lie, that surgery was tough as anything. I didn’t know exactly what I would wake up with because so much of it depended on what my surgeon found when he opened me up. I had both biological and synthetic mesh placed into my abdominal wall to help support my stomal area and my actual stoma’s function. And so far, it’s been really successful. I’ve not had a reoccurrence – touch wood, fingers crossed! – and things look good on the surface too.
It is very odd to think of just how bad it was before surgery. This before and after have really shown me how big it was.
Despite a lot of surgical issues this year, my stoma has been the least of my worries – which is exactly how I like it. I want to be able to get out there and achieve my goals, ambitions and dreams. One big goal of 2020 was to complete Lv2 AAT before the end of the year and I did so! I really smashed my final exam and got a Merit overall.
Three quarters of 2021 later and I’m already at the same stage I was at the end of 2020 but the next level up. Most of my success has come from planning and getting my stoma into a really good routine. So much so that I can predict my changes better nowadays and I am flexible about what I can achieve in one day.
Beyond surgery, my IBD has been playing up, needing some procedures to rule things in and out of diagnosis, to finally go back on Vedolizumab. It was a long wait for tests such as my MRI and ileoscope but my nurses made sure we had the next steps already ready to go so that there was not a delay in treatment when we got the green lights.
Going back on infusions has been weird after almost two years off and during the pandemic. Luckily, Veodlizumab does not leave me immunosuppressed, just have to be careful as I can get more side effects after a long period of no medication. So far, it’s only been joint pains that we are proactively managing. Stoma wise; everything is good! Routine is good, I’ve gotten so much more confident with my stoma and all the things that come with it, and I think a large part of this is due to my new stoma – Pricilla 2.0 – is easier to manage. It’s made from higher up small bowel which could have made it more problematic but the actual formation has been superb.
Going into my sixth year with Pricilla makes me feel so glad I took the change of a stoma back in 2016. Even when my proctectomy was fraught with post-op complications – and even now with this drain in situ – I know I made a good decision. I’ve now had my stoma for half the time I’ve had IBD and it’s been a different journey but one which has really challenged me to grow. And I think that’s been my biggest takeaway from things in Year Five – I went after what I wanted and did not stop. I did not let my stoma or my IBD hold me back.
But what did the next twelve months have in store for me?
- Spent 5 days as an inpatient for hernia surgery. Shortest stay for a major operation.
- Took 10 weeks off to really recover from surgery.
- Had my postponed exam in mid November and found out I passed the week before Christmas!
- Began my next level of AAT – Advanced Dipolma in the January.
- Went into sheilding due to my diabetes being now high risk in the Febuary.
- Had my first COVID vaccine in mid March.
- Took my first Lv3 exam in March and passed with a Merit!
- Began having some long lasting IBD symptoms and went in for a MRI scan.
- Had a lovely relaxed and chilled out birthday in the April.
- Follow closely by my second exam at the end of April with another Merit pass!
- Began the process of getting myself back onto biologic medication – I was in quite a big flare – by having scopes, bloods and FCP done.
- Had my first iloescope in the May which confirmed the presents of a flare and not post surgerical complciations.
- Began Vedolizumab for the fourth time that same month.
- Had my second COVID vaccine.
- Finished loading doses for Vedolizumab by the end of June.
- Just in time for a EUA on my proctectomy wound which was now abscessed, along with another sinus cyst.
- Attended daily packing of double wounds for all of June and most of July.
- Interviewed for several Lv4 apprenticeships to get me back to work and got one! Begin a new journey in September.
- In July my proctectomy wound reabscessed and I was left with a drain in situ for a month to make sure it didn’t close over.
- Sat my third Lv3 exam and passed!
Here are the Ostomy category highlights:
YEAR FIVE:
Has my Bag Improved my IBD? – 18.08.20
Same Ocean, Different Boats – 01.09.20
Experimenting and Exploring Food with an Ostomy – 20.01.21
“What do gelling agents do?” – 17.02.21
Assumptions about IBD and Stomas – 27.02.21
“How different are scans when you have a bag?” – 10.03.21
Debunking Stoma Myths – 31.03.21
Intimacy after Stoma surgery – 07.04.21
“What is life like after stoma surgery?” – 14.04.21
“How important is hydration with a stoma?” – 23.06.21
“Is having a stoma a fix or cure for IBD?” – 21.07.21
“What happens in a stoma review?” – 11.08.21
Until next time,
Do you have any questions or queries? Or just want to share your own experiences? You can leave me a reply here or leave comments via my social media accounts – on Twitter, find my blog page on Facebook and over on Instagram
If you enjoyed this post check out Stoma Life – YEAR FOUR, Happy Stomaversary!, Stoma Life – YEAR THREE and Happy 2nd Stomaversary!
