April 2018

April 2018

April; a new year

Whenever we get to April, I always find myself more excited for a new year than in January. I turned 30th this month and whilst it was quite affair, I’ve spent some time since thinking. Like, really thinking. Thinking hard about what I want to do and what I want to achieve. Which has meant lots of plans have been made; some viable and some not so. But this has meant that I’ve been working on what is actually achievable and how I go about achieve said ambitions and goals.

More of this will come out as we go through this new year but I expect some of these things will be projects not measurable by speaking. They will be of action.

Meanwhile, April has been abit fraut with some

Stoma wise; whilst my stoma rash has settled down considerable and I got in a good stretch of no leaks, we have returned to the same issue. Probably due to eating abit more on and around my birthday but its been getting abit annoying and frustrating. Whilst I do take the leaks in my stride and I can cope well with doing some ad hoc bag changes – some at work, most of them during the day instead of first thing in the morning as per usual  – I do wish I could go back to it being ‘perfect’. This means I’ve been using more stock, so I’ve had to manage that and order some supplies earlier than normal. But in reality, this isn’t too much of a big deal; I can manage.


IBD wise; I’ve had a couple of times when the pain from the stump has caused me considerable stress and aggravation. I’ve had some very lengthy discussions with the IBD nurses and result was an examation to determine the next step. We upgraded my localised medication to steroid foam and then I also got booked in for a MRI of my pelvis; due to the pain I was experiencing in my lower back when my stump flared up. Realistically, I want this stump removed but I am hesitant. Part of me is scared and part of me wonders if anything will be better after surgery. I also don’t know much about which operation they will perform and – more importantly – how it will be performed. So fear and anxiety overrule my decision. When my stump is flaring and I apply the medication, it resolve it for only a short time. I take painkillers on top so that I can manage it and continue to work. It’s becoming a literal pain in the ass.

On top of the MRI of my pelvis, I also had Veodlizumab number 6 – which went well, despite not getting a decent vein first time. I also had a MRI of my liver too as well as my GI clinic appointment – which unfortunately was a waste of time. I have alot of things to resolved with my team before we go forward.


Advocacy wise; I’ve been able to get my head down and plan out my next couple of months of writing. On top of this, I’ve been able to work ahead of my own schedule and get some projects in the pipelines too. I have participated in some guest blog posts – going live over the summer – and I’ve got myself into a secret project as well as a IBD research day with CCUK next month. Going to be a busy May for me.

Life wise; the move to Peterborough has been delayed. We decided a house is what we want and not a flat, so the search continues. And we have a busy summer ahead of us with work and other plans; so postponing it until after then is smart instead of rushing into something we don’t love. I’m still looking into what I ultimately want my purpose to be, what I realistically achieve in this decade and where I see my life going. I’m not fixated on a particular thing, and its not as if I won’t be happy with wherever life chooses to take me. I’ll make the best of it, because we only get one life.

Here is what I wrote about in April:

Until next time,


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