Stoma wise; prescription of my supplies has now been updated but still having some issues. One is the lack of barrier being authorised by my GP – on my to do list for an appointment for my ‘medication and appliance review’ with a GP in mid March. I do have some barrier to use in the meantime; samples from other companies because my previous favourite has been failing alot these last couple weeks. So, whist I wait for my repeat Px to be updated correctly, I will find a new product that suits. So that is my stoma saga for February, but it did end with a bang – I had some trouble with it after my biopsy. I wasn’t able to get up and empty it as much as needed so I’ve ended up with a bleeding and broken patch of skin right under my stoma, which is proving difficult to heal. I am on it, but I am back to daily changes again for a while.
IBD wise; things have been okay despite the pain being an ongoing issue. I found out my surgery date has now been pushed back to May because of some more emergent patients ahead of me. That is fine, I can manage for a while longer, but of course I am disappointed. Was hoping to being spending my birthday being / closely looking forward to being rectum free. The positive from this is that I can settle into my new work pattern (finally had my part time request accepted and implemented) and we can save some money for the time I will be off for – a max of 8 weeks, so two months. It’ll be a challenge, so I think this moving back of my date is for the best. Despite my want to be done with my troublesome rectum, I also want more time to think. I am set on it happening but I do have moments when I wonder about a J pouch and just keeping on keeping on with this rectum for a while. It’s all just thought in my head..
Advocacy wise; I’ve been getting involved in some research which is promising. I’ve also been reading more and more about new updates so it’s been a busy one. I’ve also been looking into extra intestinal manifestations for my current blog series which has been fruitful.
Life wise; Newton is settling in well, I am becoming more confident with my mental health and I finally have a new bed where I get some decent sleep. I’m back to meal prepping as this really helped me control my fatigue. Cooking once a week instead of each night after work helped a great deal when I was on my own. This time, I’m cooking double and still finding time to cook once in the week too, to keep me interested in honing my skills.
Elsewhere, life has been good. I’ve found out some behavioral aspects from my CBT session which I can work on, I’ve been mindful about what I am spending and what I am doing / participating in. I’ve learnt more about saying no and listening less to my anxiety whist working on being productive so that I don’t end up doing too much in one day and overexerting myself, causing me a flare of symptoms or increasing my stress.
Here is what I wrote about in February:
- The Digestive System: Part IV
- The Importance of a AUR – Appliance User Review
- Extra Intestinal Manifestations – The Liver
- Extra Intestinal Manifestations – The Eyes
- Extra Intestinal Manifestations – The Skin
- My Love for Self Care
- Life Lately | Liver Biopsy
- Extra Intestinal Manifestations – The Joints
- Extra Intestinal Manifestations – The Bones
Until next time,