July 2018

July 2018

July; keep on keeping’ on

July seems to have been long but also short at the same time?

WHERE IS ALL THE YEAR GOING?

Despite that, it’s been a good’un.

Stoma wise; despite the hot weather, I’ve managed to maintain good peristomal skin and managed to keep my abdominal area free from issues. I had a small rash on the edge of my flange when I used an extender as an emergency during the very hottest weather, but that settled down with discontinuation and getting my template sorted.

I tell you, the correct template for your bag works wonders. In my best days, I managed to keep a bag on for almost four days, twice as long as usual and four times longer than that particular period! I was well impressed. The slight change in my cutting has made a continued difference too. I always go back to my template when leaks begin to happen on a more regular basis. A top tip, for new and old ostomates, alike!

IBD wise; I’ve found that since we have amended my pain management treatment plan and that has settled down, my IBD has become more manageable, so much so that I have not had many days when it was causing an issue. I’ve been tracking three of my IBD main issues – GI symptoms, joint pain and my fatigue – in my bullet journal and it’s been interesting to see that collate to particular days and to certain circumstances in July. Looking forward to seeing my August habits being tracked.

Vedolizumab number eight happened last week and it went well. No delays, no issues with cannulas and even got unhooked and released on time so I could spend my evening travelling home. That has been a milestone for me too; I’ve not had Vedolziumab last as long as this. But in all this positivity, I’ve been reminded that last year, I was in a desperate spiral of feeling unwell and not knowing what was going on. It was going to be a big flare up, my biggest since surgery and it was a bleak time. I’m trying to let it just go but I feel it needs to exploring.

Maybe that will come in August.. gotta find time.

Advocacy wise; I’ve had an article I wrote for Coloplast Care earlier in the year finally published! The link will be below; I had sort of forgotten about it, but I do feel a warm glow every time I read back something from a while ago. It’s hard to believe that’s me; my words, my thoughts, my experiences. It’s nice to remember but also great to see how much I either still agree with or how much things have improved since then.

I also took part in some research on the pathway for diagnosis and how important digital pathways would be for collecting patient data for collaboration with primary care doctors and specialists. It was interesting and. I do hope that what I experiences in creating content will come to be something that some do pick up and implement.

Life wise; we are entering the summer and it’s been hot and too fatiguing to do much more than the primary things needed – eating, sleeping, showering. So, sadly, some of my blog work has fallen behind schedule because my fatigue has been higher than expected and to be honest, I’ve been spending my rest time, with my partner before he goes away for most of August. Things like the move and the future plans have been just sidelined until we have more time and energy to spend on them.

That unfortunately is the pit fall of chronic illness; priorities must be made, compromises reached and this means my deadlines have to move. But, health comes first.

 

Here is what I wrote about in July:

 

Until next time,

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