Stoma wise; we had a few changes during my admission to my stoma – she shrank down in the immediate post op period and I could get away with a couple days without a change. In the weeks since discharge, I’ve had to try new things, including a deeper convexity on my bag. With my seal, without it, but definitely without paste. It does feel like things are creeping back up to the normal before surgery but I have found a two piece bag easier to manage and control my cutting and usage. So whilst I still get use to these new changes, I’ve had to manage my supplies with care too. What has been draining has been the increase use of dry wipes to help clean my perianal wound.

IBD wise; I received Vedolizumab last month, just a week prior to admission so my IBD has been well controlled whilst recovering. Now that we have hit a month post op and beyond, I am getting closer to my next infusion. Coupled with having to take antibiotics for wound infection, I am finding eating hard and so my abdomen feels off with these tablets too. I’ve been doing my best to self manage and keep calm – I spend the majority of days either at home or at the GP for a dressing change – so it’s easy to sometimes let my mind take over.

Advocacy wise; I have got some things in the pipeline but because surgery came without a longer warning, I’ve had some things I’ve needed to cancel. Included in this is anything I pencilled in for May because I had hoped my wounds would be close to closed by now. Alas, everything is taking a hit now that they are infection and possibly needing a EUA to be fixed. I have managed to clean and tidy up my website for when I am back to full health so that’s been taking me some time to do, filling in the void of recovery.

Life wise; the focus has been my recovery. I’ve had daily changes at the GP practice since early April and this continues now, and probably all the way through May too. In the closing days of this month, I’ve struggled with the pain side of my wounds – possibly indicating that my infection is stronger than me and the antibiotics – so I await a urgent MRI to get a look at what is going on. I generally feel crummy since starting antibiotics – expected and normal – but it feels more than just medication taking a toll on my insides. I don’t want another surgery to fix this infection but I think it would be wise. My wound cavity is closing at the surface but there is so much more discharge inside coming out, so I don’t know if this is good or bad.

It’s hard to plan or even do anything when I can’t spent longer than 30 minutes sat in one position. I do feel like it’s the same shit, different day and this is tough on us. As time goes on, I find myself being more irritable and more angry at my wounds. It’s hard. I won’t lie, it’s tough on us.


Here is what I wrote about in April:

Until next time,