Stoma wise; I’ve actually had some great improvements in my skin, even with the humid weather! I’ve gotten used to my new deeper convex bag and ordered my new supplies with my new delivery company. I haven’t got to go back for a review for another month, so I am settling down into my old routine of two days with each bag on but I do also have the luxury and freedom to change when I need to as I’m still off sick.
IBD wise; I’ve experienced a huge increase in my symptoms. While manage my wound and it’s reoccurrence infection, I’ve had increased in abdominal pain, lower appetite and increased nausea as well as the familiar but undesired smell of active disease in my bowel coming from my output. It’s been probably a year since this and it was not a welcome change. I have been in constant discussion with my team to get my medication at the right time – in between infections and my EUA – we’ve had to find a balance. I have had an admission to A&E for my wound and we found out my disease was very active so giving my Vedolizumab was priority number one after the infection was cleared up. Luckily this happened on the final day of the month and I feel better for having it.
Advocacy wise; With my ongoing issues from surgery, I’ve taken a step back from advocacy going into June, but I did partake in World IBD Day and shared alot of my old blog posts under the hashtag #YCArchvies which you can still use!
Life wise; I’ve been recovering. This has been hard this month because it was suppose to be a month filled with events and activities but I’ve had to cancel the majority of them so I can recover from the second surgery. May feels like a repeat of April only uglier and harder. I’ve not been great at being patient but I have been honest and open about how this month has been such a challenge.
Here is what I wrote about in May:
- Post Operative Blues: The Emotional Highs & Lows after Discharge from Hospital
- Surgery Anniversary
- Post Surgery Check Up
- World IBD Day 2019
- How do I do Things for Myself when Unwell?
Until next time,