Happy New Year?
Stoma wise; everything seems to be ticking along quite well, considering that September always ends up being just a tad shitty. In fact, it’s been so good that I’ve not had to order for almost a month so that’s always reassuring; that my routine is more solid and I can manage things without too many mishaps. I have got a community AUR appointment scheduled for early October so we’ll see if anything else changes.
IBD wise; I was scheduled for a second EUA on my perianal wound but that got cancelled as it was no longer required! That threw me for a loop but it was a good feeling knowing that I wasn’t going to have to go under the knife again. But on the flip side, on what I predicted as my annual biological treatment review, I got notified that I was in clinical remission and my infusions would be possibly discontinued at the end of the year, as long as I was stable. This led me into another blog post – which you can read here.
Following that, I have been experiencing alot of nausea and fatigue on top of what I’d normally associate with having my Vedolizumab. That is becoming more difficult to contend with as I figure out what exactly I do to trigger this off or its just another thing to get investigated, I am not keen at all. But trying to take it all in my stride.
Advocacy wise; I’ve been to Manchester for the PPI event with CCUK. I also attended a collaborators event for a clinical trial and that has taken up alot of my time since, writing and planning new aspects of the website to reflect my contribution.
Life wise; College started the second week of September and I AM LOVING IT. Having said that – and despite my insecurities about returning to some education after almost ten years away – I do find that I struggle to keep focus on my studies once I’m outside of class which I am hoping to sort out before I need to revise for the exams. I think some of it is down to low Vit D and B12 so some sort of supplement needs to be added in, but I’ll keep you posted!
Here is what I wrote about in September:
- IBD & Mental Health
- Do You Ever Feel Like a ‘bad’ Patient?
- Life Lately | Early September Madness
- Vedolizumab – Two Years On
- September: Going Back to Zero
Until next time,