June; all of the ACHES
June has seemed to just disappear hasn’t it? I can’t remember much of what I’ve done, it feels like nothing happened, but of course, that’s not the case.
Stoma wise; with all the humid weather we’ve had, it’s meant that my bags aren’t lasting my full 48 hours as normal. This is partly due to the weather making me sweat and my bag just feeling uncomfortable after about a day, and it also is in part due to the fact that I’ve been keeping myself well hydrated, resulting in more output, thus more empties and the baseplate just not holding up.
Not that this is bad, this is good. I’ve been able to keep on top of issues, I’ve gotten abit of a broken skin which I can now monitor every day which is a bonus. And it also has meant that I’ve had to just change when I’ve not expected to – ie after coming home instead of in the morning. I’ve had to be more reactive and just do what is necessary. This is different for me, and its taken a while to get use to but I do appreciate it. I’m also very grateful for having enough supplies to see me through!
It’s always good to remember that whilst you live with your stoma, sometimes what your stoma does, has to dictate how you response. I can’t or shouldn’t ignore my bag leaking, I also shouldn’t let my bag wear down so much that it causes me issues. Being a responsible patient is part of this and being an ostomy advocate also means telling the truth.
IBD wise; we have had nothing on this front for a while. I’ve now been taken off my Pregablin as it was causing the most intense and lasting aches in my joints. After stopping this in particular, I’ve been leaning on my Amatriptyline for relief which it has been doing during the night. In the day, as I’ve been signed off work, I’ve been resting but also making sure I get some exercise to help move the uncomfortable, aches and pains in my joints. This has gotten worse in this second week off so I’m not sure if this is now Amatriptyline related or some of my Vedolizumab side effects. I have a review with my GP and I need a new plan.
However, not having a plan is getting me more anxious and stressed which has meant I’ve been questioning my antidepressants and their effectiveness. I find more of my anxiety symptoms come out when I try harder and harder to keep things under control by not talking about or writing about them.
I’ve got a couple of appointments to see my plethora of specialists, starting with Heptology next month, Dermatology in August and Gastroenterology in September. In between, I have Vedolizumab number eight! That’ll be the closest to the year mark of being on it, so I am expecting a small bowel MRI scan for a GI check up.
If I can get my pain and my sleep resolved abit better, I will be happy with how the IBD side of my life is going.
Advocacy wise; I’ve had my episode of Britain’s Best Junior Doctor air a few days ago and it was a nervous and scary time!
Besides that, I’m getting involved with some IBD research and hopefully that’ll open some doors, or at least windows, into a different direction.
Life wise; it’s time again to look at new rental properties. Yes, the move is back on and we are now closer to that particular date so viewing properties is now back at the forefront. Hopefully this goes smoothly. Packing and actually moving, that’ll be the challenge!
Here is what I wrote about in June:
- The What and Why: Inflammation & CRP
- IBD Patient Involvement in Research Day
- IBD Basics: Blood Tests
- The What and Why: Faecal Calprotectin – The Poop Test
- Life Lately: Rollercoasters
- What Does it Mean to be a Patient?
Until next time,