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).

#IBDHour September 2017

On our first birthday Jenna Farmer is posing the questions as follow:

Q1 Please introduce yourself (you can share your diagnosis if you wish) and tell us how your summer was!

Q2 There are so many different diets out there, do you follow a strict diet and does it make a difference to your symptoms?

Q3 What are your ‘trigger foods’ that make your IBD worse?

Q4 On the end of the spectrum, what’s your go to food in a flare?

Q5 Do you think there is enough support with discussing diet and IBD-such as access to dieticians?

Q6 What’s your biggest worry about the diet you are on? E.g missing out on a certain food group or nutrient?

Q7 Low residue and low Fodmap diets are becoming popular-but have drawbacks. What are your experiences with them?

The Other Side

Interesting to think about the other side

GP and Human - Dr. Kathryn Hayman

You see ‘a GP;’ a role who is there at your service to sort out your healthcare needs.

WHO is on the other side? Do you know? Can you see?

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What do you see? You had to wait to be seen. This annoyed you. What on earth is the GP doing? You grumble as you go in to be seen.

What is the other side? Patients keep arriving every 10 minutes over and over all day long. Your GP is trying to keep to time but people keep coming in with lists, complex issues and mental health problems which can’t be done in the allocated time. The GP knows you don’t like having to wait. She feels guilty about this and stressed by it. She apologises even though it’s not her fault. The GP is adding ‘catch-up’ slots in to try and prevent patients having to sit in the…

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#IBDHour July 2017 – Support Groups

Here are the questions for tonight’s #IBDHour – follow on Twitter @IBDHour

Q1 Please introduce yourself (you can share your diagnosis if you wish) and say how you are today

Q2 Do you access any online groups for support – and what support do they offer?

Q3 Have you attended a real life group or event organised by an IBD organisation? If not, why not?

Q4 Is there a need for real life support groups? What would they look like?

Q5 @CrohnsColitisUK are clear they have local groups to raise awareness and fundraise, would you like them to offer more?

Q6 So much of life is online now – what is the benefit of real life contact?

Q7 What role should hospitals have in offering support? Should it just be to individuals or groups?

#IBDHour June 2017 – Posititivity

Here are the questions for this months IBD Hour!

Q1 Please introduce yourself (you can share your diagnosis if you wish) and share a positive from the last month

Q2 What has been your proudest achievement since your diagnosis?

Q3 IBD can be very negative – what do you do to stay positive?

Q4 When you are feeling down, have you got a ‘go to’ activity, food or drink to pick you up?

Q5 Have you got a person in your life who helps you remain positive?

Q6 For people who struggle to be positive, what advice would you give them?

Q7 Let’s finish with a positive thought, or something coming up for you in the next month

Do come and join us on Twitter at 8pm UK time on 15th June – search the #IBDHour

World IBD Day 2017

Happy World IBD Day everyone! It’s World IBD Day today (19th May) so you’ll hopefully see lots of purple and various media coverage about the conditions. I’m always happy to answer questions, but it is worth sharing these from Crohn’s & Colitis UK

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Which annoyingly I don’t know how to embed…

Anyway, in July my family and I are goign to be raising money for Crohn’s & Colitis UK by taking part in there WalkIT event in Bristol – if you’d like to sponsor us, you can do so here. The charity produce great literature about IBD, as well as funding research into the conditiona nd treatments. They also campaign for more IBD Nurses and better singage on disable toilets, among other things.