Month Three.

 

Stoma wise; I’ve had abit of a rough time with my ostomy. In the days and then weeks following my Vedolizumab at the end of May, I was experiencing very loose output and multiple empties. I had to rely on gelling solutions to get my output thicker so I could manage it in the bag itself and when emptying. It was exhausting. Added to that my IBD was flaring slightly, I found eating hard due to so much nausea.

Thankfully, that has now resolved itself but it’s brought alot more sore peristomal skin in my usual place – between 3 and 7pm on the clock face that is my stoma, looking down – so it’s been powder and barrier spray to the rescue. The Crusting method has been my lifesaver these last two weeks or so.

I still am finding some changes happening in this post operative recovery period – even after three months since the original surgery – but I’ve been hit with multiple infections, including a current viral infection which has brought out a lovely chesty cough; making my abdomen sore from so much strong muscular movement. Protecting my stoma against that has been challenging.

IBD wise; as I’ve just mentioned, my Crohn’s has been more active in June. I had some repeat bloods done in the middle of the month and whilst my CRP was down from 54 to 26, my WBC was up and so were my LFTs. Just going to prove that my biologic treatment is definitely worsening my liver. It is something to be discussed in my next clinic appointment in mid July.

Coupled with that, we have been having some very warm weather in the UK, meaning dehydration has been tough to handle. I was admitted to A&E in the latter part of the month – just overnight – to have some fluids and get my wound checked. Whilst that is getting smaller, it was slightly infected and giving me some odd IBD symptoms. Glad it was nothing serious but it was tough. Hospital admissions are always tough and the after effects have been lingering ever since.

Advocacy wise; It’s been a quite month for me. I’ve done little writing due to my hiatus from blogging but I have been trying to get prepped for upcoming events. Working ahead of schedule is tough because my motivation is at an all time low because I am not working at the moment. But I’m sure this part of my life will come back this month as I plan to get back to work.

Life wise; It’s been another month of not much going on. My partner has been working alot, I’ve been spending my days recovering and resting – not realising that despite all appearances, my body is deep in recovery mode and with a chronic illness that takes what feels like forever – but being patient has been better this month. I’ve restarted CBT too which has been good at grounding my routines and planning forward.

 

Here is what I wrote about in June:

Until next time,