You can leave your hat on…

You might remember that in the summer I went to an event organised by Purple Wings Charity who give grants to people with stomas from IBD to help regain confidence.

One of there annual fundraising events is the pin-up calendar, and I am going to be taking part for 2019! the shoot is in January and I need to raise at leats £50 to take part – I’m hoping to raise at least £100.

You can read more about the charity here and donate via JustGiving – so go on, get me in my pants!

I’m hoping that this will be a motivation to take control of my diet and lose a bit of weight too, so help me help myself!

More wound news…

Back in September I posted this update about my wound and mental health. I had some really lovely feedback and messages, so thank you to all the well wishers.

Dealing with the mental health first – I saw the GP, and was signposted to South Gloucestershire Talking Therapies also known as IAPT (Improving Access to Psychological Therapies) and had an assessment consultation which assessed me as having moderate depression/ low mood. I’ve been assigned to a course for support and although I have to wait a while for one that fits in with work and everything else, but have support at work and from my family too. Opening up about it has really helped, but I’m going to see it through and get the help.

In the last update I said we were bringing out the big guns and going back to vac therapy as the PICO dressing hadn’t been able to cope with the exudate. So we started the Acti VAC therapy with a little portable unit (see picture).

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Sadly it was not possible to maintain the seal which seems to be due to the position of the wound as much as anything, although it was also still pretty wet – so I ended up having to remove it – in the photo below at work. Vac dressing also includes a free wax, in my case of the buttocks. I also think that being at work and managing a toddler didn’t help.

The Acti VAC pump was pretty easy to manage though – it comes with a little carry bag and doesn’t need to be constantly plugged in, and is nice and quiet. It does take a while to change the dressing, as it has to be framed and then applied, then the seal checked and any gaps filled in.

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Following the failure of this, and been advised to apply something antibacterial, so went back to the Ortem metronizadole ointment which once again did some good stuff. At the same time I wrote to my surgeon requesting that either I be admitted for the vac therapy as an in-patient – or be referred to the Wound Healing Unit in Cardiff, where Professor Keith Harding is the lead consultant. My wife heard about this unit by chance at a conference, and I’m very glad she did!

Patients I speak to online often seem reluctant to ask for a second opinion. Perhaps they fear upsetting their current team or consultant, but this has never been my experience – in fact twice I have had consultant surgeons say they want me to see someone else because either they recognise they can no longer help me, or they just want me to hear other options. My consultant referred me to Cardiff, and because of a cancellation I am going there on Wednesday, which has pleased everyone involved.

In the mean time, the tissue viability nurse has started me on a different negative pressure therapy – SNAP by Acelity (see picture below).

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This silent, spring based unit has a dressing more akin to a stoma bag, so it has been much better at maintaining the seal and seems to be working well – however I am not going to be cancelling my appointment with the Prof just yet…

So, that is my little health pdate – I have some other stuff to update on too, but now it is late and time for bed (after I schedule this post!). Until next time, which will feature nudity (sort of).

The Next Step, Wound-wise…

Monday wasn’t the best day I’ve ever had. Having driven into work after dropping off the boy at nursery and him not wanting to go in, I discovered that my meeting had to be cancelled. It was no-ones fault, but it really threw me out as I suddenly gained time that I didn’t have everything with me I needed to fill productively.

I was also annoyed because I’d driven for an hour to get to work, and would have to leave early for my dressing appointment – so lost time in my day that I could have spent working from home. I took out my anger on an early lunch at KFC.

Let’s give this a bit more context. I’m currently having my now 19 month unhealed chronic wound where my rectum and anus were removed treated with a PICO dressing – a vacuum dressing with a small portable battery-powered pump that I’d previously last year – I blogged about it here. Because of that, I’d had to cancel my involvement in the bubble football activity on a stag do I’ve just been on. As it turned out, the dressing had become overwhelmed anyway, having been changed on the Wednesday (there are only two dressings in a pack so it can only be changed once a week, whilst the pump lasts 7 days). So it’s still wetter than we thought it would be. This is still having multiple dressing changes each week, and at this point is starting to get me down. The disruption is the thing, plus the fact it has been going on for quite so long – well chronicled on this blog!

What that looks like for me is a struggle with motivation – so less blogging for example, no poetry writing. I eat badly – not main meals but snacks. I drink more (not excessively, but more than I probably should) and fritter money away, or buy things I don’t really need.

My focus is reduced at work too, so I feel less satisfied with my job, and probably could be doing more. The ongoing saga has meant I have not been able to exercise as much as I would like, and coupled with the extra eating that has led to weight gain – some was fine, but I am now the heaviest I have ever been at over 14 stone, and so am now clinically overweight, and that starts to have an impact too – because I have always been pretty skinny. But can’t exercise to lose some – pass the ice cream!

I had decided today after that heavy stag weekend that I would speak to my GP and try and get some kind of deadline for progress with the wound. I haven’t managed to get an appointment yet, however the Community Tissue Viability Nurse is pulling out the big guns and I’ll be getting a larger vac pump next week – so that at least should move things forward.

I’m still going to talk to the GP though. I recognise in myself that things are not right, and whilst I don’t believe I am depressed, it feels like I am in a period of low mood, which I have had a couple of times before. We are just coming out of a reorganisation at work, and I think I attributed much of my feeling to that, but now it is over the feelings are still there…

So, there you go. A wound update, a mental health disclosure and an insight into how I deal with anger. I should note that I was not the only person in KFC at 11.30am…

I shall try and update more often, in the meantime, why not treat yourself to a badge via my FB page store?