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What I’ve Learnt and Achieve in the Last Twelve Months with my Ostomy

Year Four with Priscilla has been quiet, compared to other years. She settled down into a new routine after proctectomy surgery and wound day surgery. She even remained calm when I came off my medication and we came into 2020. Then COVID happened and well, I got some bad news.

April – trying to figure out what on earth was doing this to me; a blockage? a flare up? something else?

May – getting to the diagnostic bottom of my chronic obstructions which started a week before COVID lock down in the UK

June – after a CT scan, I was called in for a surgical assessment, after the discovered a large parastomal hernia

But what did the next twelve months have in store for me?

  • I began the ‘year’ having my perianal wound packed.
  • Attended CCUK PPI day in Manchester and met some of my lovely online IBD friends in real life!
  • Did a presentation at a PROFILE research event in London.
  • Started college to study a Foundation Certificate in Accounting.
  • Found out my Vedolizumab wouldn’t be renewed for 2020 – clinical remission – so the last infusion would be in September.
  • Went part-time permanently at work.
  • Was part of my hospitals’ IBD Patient Panel open day.
  • Was written about in the Connect Autumn issue as CCUK Research Ambassador.
  • Had my mental health medications altered as I struggled to cope.
  • Eventually, I decided to leave my job and focus on studying.
  • Endocrinologist trialled me on Metformin for my PCOS and Hirsutism but this failed. We started my current medication before lockdown and so far it is helping!
  • Did calprotectin research with Oshi Health.
  • Attended IBD sleep workshop with Ampersand & My IBD Care in London.
  • Was discharged from Colorectal surgery after my perianal wound finally closed!
  • Began my monthly blog newsletter in January.
  • Had my stoma products amended to help contain some persistent leaks.
  • Passed my first two AAT exams and became a Bookkeeper!
  • Had a scary month when Newton was hit by a car and needed a big surgery on his hip.
  • Had a small surgery on some epidermal cysts on my face.
  • Then we had COVID happen, lockdown in the UK from late March – cancelling my third exam.
  • Attended hospital for emergent care due to obstructions.
  • One x-ray, one CT scan and a course of steroids later, I have a parastomal hernia!
  • Managing that has been tough during lockdown but surgery is only a week away now!
  • Took my third AAT exam and passed with flying colours.
  • The final exam will now take place in October due to self-isolation prior to admission and recovery.

Here are the Ostomy catagory highlights:

YEAR FOUR:

Travelling with IBD and a Stoma – 31.10.19

Sleep with a Stoma – 24.03.20

Ostomy Uncovered – How to Resize your Baseplate – 07.04.20

Fibre with IBD – 05.06.20

What is Convexity? – 09.06.20

A Guide to Summer with an Ostomy – 14.07.20

When Does Having an Ostomy Fade into the Background? – 28.07.20

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 Happy Stomaversary!, Stoma Life – YEAR THREE and Happy 2nd Stomaversary!