What happened in Wales Part 2

So last week I journeyed back to the Welsh Wound Innovation Centre clinic for my first follow-up appointment with wound wizard Prof Harding – read about my first visit here.

Now I was supposed to be having an MRI which has been requested but not yet completed, so I had queried if it was worth me attending or rearranging, but I was told to still attend.

When I got to the appointment I was told this was  because, although the scan hadn’t been done they wanted to check on any change which was very reassuring. And indeed, the wound was smaller than a month ago – a reduction of 0.8cms, which as it was only 2.5 stubbon cms did mean a reduction of 32% i was also told that my blood tests were normal – so this means that no infection was detected by the blood test. They still want the MRI to check the size and shape of the cavity and ensure there is nothing lurking – so I await that appointment from the BRI.

The Prof himself did make an appearance, and had been shown the last blog entry by his team when I tagged them on Twitter. He was very compliomentry about it, so hopefully he will continue to read it!

So all this means that the SNAP system seems to be doing it’s thing, slowly but surely. I go back to Cardiff in January, unless we get the MRI sooner – will keep you all updated…

NICE to see you…

A little while back Crohn’s & Colitis UK promoted an opportunity to apply to join a National Institute of Clinical Excellence (NICE) Committee to review some of the guidance around the treatment of ulcerative colitis.

Following an application and competitive interview process, I’m very happy to be able to share that I was appointed to the committee for 12 months, and the first meeting is tomorrow in Manchester!

We are going to be looking at some guidance around drugs for ulcerative colitis and some other things too – we’ll learn about the scope of the year when we meet.

Although I am part of the committee as an individual, my role is to get the patient voice heard, so I will be using my blog and social media platforms to canvas opinions from time to time.

I’ll be updating on social media as I travel up to the meeting this evening and when I can during the day, and I’ll do something afterwards to let you know how it was.

It’s really important that the views of patients are heard in these processes, and I’m really looking forward to being involved.

What happened in Wales

 

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University Hospital of Wales

So today I crossed the Severn Bridge and went to my appointment at University Hospital Wales with the Wound Healing Service led by Professor Keith Harding. After 22 months with my unhealed perineal wound where my pouch, rectum and anus were removed, I – and the team supporting the wound – were keen to get the expert opinion of the man who literally writes the books about wound healing.

I arrived in plenty of time – I’d taken the day off work and know that hospital parking can be interesting. The setting is lovely, with a nice open space and some sculptures at the entrance to the children’s hospital.

The concourse at the main entrance is like a small shopping centre with a bank and a post office, as well as coffee, book and sandwich shops. What was nice is that there was a mix of high street names and independent units. I worked out where my clinic was, and then headed for the restaurant which has won awards for it’s healthy eating options – so I had a flat bread, baked crisps and water, and it was really nice!

I also found a portrait of this chap…

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Nye

So after lunch I went down to the clinic and was first in which is always nice. I saw a lovely nurse called Hannah who started taking a history – which always takes a little while these days, and it was mostly just the wound treatments!

A registrar came through and then they examined the wound, measuring it and noting the dimensions. They then called through the Professor!

Depending upon your point of view, I’ve either been fortunate or unfortunate to have been treated by three professors – Nicholls, Clark and now Harding. There is something very calming about being in the presence of someone who not only knows what they are doing, but also turn teaches others either directly or by writing books and journal articles – the very top of the field.

So he came in, asked a few questions about how I came to be there (and then asked me to share that with some visitors to the clinic too) and examined the wound. He asked a few more questions, in passing mentioned that ileo-anal pouches do ‘often fail’ (I guess he doesn’t see the people whose are fine) and then gave his prognosis:

  1. An underlying infection. He requested some bloods be taken, and this may show if there is something there. He asked if a biopsy had been taken (it hasn’t) so this might be a future possibility depending on the blood results.
  2. A ‘dumbbell’ shaped cavity, with the coccyx pushing in and not allowing the upper cavity to drain sufficiently – and MRI scan is being requested back in Bristol so they can compare images. Possible solution – shave off some of the coccyx to allow it to drain…

Obviously it is early days, but he also said something to me before he went off to see another patient:

‘We can’t heal everyone we see – we help about 80% of our patients. I won’t promise to heal you, but I do promise that you won’t be forgotten.’

I go back in 4 weeks, so lets hope I can get the MRI before then!

 

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).

Stag with a Stoma

I recently went on a stag do. For me it involved lots of drinking and some dancing and then some more drinking, a really long sleep and then more drinking…

This was the fourth stag do I’ve been on since my IBD diagnosis and surgeries – two with Stoma’s, two with an internal pouch. It could be a daunting prospect, so here are some things to think about before you get so drunk you end up asleep in a night club.

Do people know?

Depending on whose stag do it is, not everyone might know about your IBD/ stoma. There is bound to be someone you’ve never met. How open you are is a big part of your life, and it could be that just the stag and organiser know, or maybe no one at all. Remember though that when it’s well managed a stoma shouldn’t be a barrier to most activities, but do consider letting people know about it if it is going to restrict you in some way.

Travel

Travelling can be stressful, particularly if public transport or airports come into play. Make sure you have an easily accessible spare appliance and accessories to change, and a RADAR key to give you access to disabled toilets. You’d be surprised that big chain pubs like Wetherspoons and even some nightclubs have RADAR key access toilets which can be a comfort.

Activities

Activities can be a big part of stag dos. I’ve paintballed and go-karted with mine (wearing a shield for the paint balling). Depending on how recent your surgery was you might want to wear some support wear – a belt, vest or underwear. These are available on prescription from companies including Vanilla Blush and Comfizz. Speak to your stoma nurse for more details.

Drinking

One issue I have with my stoma is drinking large volumes leads to liquid output – so pints are not a good option for me all night long. Thankfully gin and tonic seems to cause fewer problems. If you know that large volumes causes issues, then switch to short drinks. You might also benefit from a sachet that traps liquid output and turns it to a gel – like Trio Pearls for example. I took some with me on my recent stag do – although didn’t need them in the end.

I also carried extra loperamide, but you should check with your doctor before using it if you don’t usually do so.

Bag for supplies

I have a little Timberland man bag that I use to carry my spare appliance, RADAR key and a few other bits. I managed to carry this around no problem in Cardiff, although did have to put it int he cloakrom in one club we visited. At this point I stuck my spare bag in my back pocket, just in case.

Food

Sometimes in the rush of the pub crawl, eating gets forgotten or at least delayed. If you are drinking lots then someone else is bound to be hungry, so grab a bag of crisps at the bar or divert to a shop to grab something, particularly if you know you need to eat regularly to maintain your consistency.

Sharing rooms

Hotels are often shared on a stag do. If you end up sharing with someone you don’t know, or haven’t seen for years, then do consider if your output might be any smellier than normal (curry and a pint?). If you don’t already use a deodorant for your bag, get a sample for the weekend – I use Na’Scent, but other solutions, including mint Tic Tacs- are available.

So, there you go – my tips on surving a stag do with a stoma.

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?

Walk It! Completed

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So on Saturday I took part in Walk IT! – a sponsored walk raising funds for Crohn’s & Colitis UK. I – along with my wife, 3 year old son and my dad – walked 5 km around the centre of Bristol. It was a good day for walking – not too hot – although we did encounter some pretty steep hills (although that was mostly from where we parked the car to the start point – good old Apple maps…)

I did a Walk IT! last year too at Rutland Water which was lovely, but there is something extra about walking through a busy city centre on a Saturday for boosting the awareness raising potential. We even picked up a couple of donations as we wandered about.

The event was really well organised, marshalled and had a really nice feel to it. We have managed to raise over £400 for Crohn’s & Colitis UK which will be put to good use funding research and providing resources to IBD sufferers around the UK.

I thin k one of the highlights had to be all the volunteers gathering and cheering as we crossed the line – and then leting Jonah have another go because he liked being cheered so much!

There is still time to make a donation if you wish, by visiting the Justgiving Page.

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