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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Small victories

Firstly, apologies for being a little quieter than I would have liked to be for World IBD Day. On Wednesday we got ‘the call’ from nursery – little man has spots, can you get them checked out. Turned out to be Chicken Pox II – The Return. So lots of stuff had to be moved and cancelled, and because the pox prevented him sleeping, we didn’t sleep either until last night. Hopefully he’ll be able to go back to nursery on Tuesday.

We have been very grateful for the help, support and advice of our GP surgery (urgent care nurse & GP), NHS 111 and out of hours GP and community pharmacist in trying to make him at least comfortable whilst this has been going on. When your child is having really high temperatures and symptoms which when Googled look terrible, it can be difficult to resist jumping in the car and heading for A&E – but I took my own advice from here and we managed it, and our anxieties without hours and hours of waiting.

Anyway, the new treatment that I was started on after my EUA seems to be working, and so yesterday for the first time in 4 years I was able to dispense with the little net pants I’ve used to hold my incontinence pads in place (see picture). I’m still wearing a small pad, but it’s of the type you can pick up in the supermarket rather than the full inco pad I had been wearing.

I have to admit it was a bit odd being less… restricted. However, for me it is a huge step forward to this wound being healed – less discharge so less need for a pad. And that is a step towards exercise and being able to be more active with my family and in life. The fact that I only have to have the wound checked twice a week, rather than dressed everyday has already made a huge difference to our lives – and so I am very much looking forward to it all being over!

So for now I just have to decide what to do with myc ollection of net pants. A ritual burning? Or perhaps I’ll put them on eBay – I understand there is a market for such things…

Mental Health Awareness Week – #MHAW17

The theme for this years Mental Health Awareness Week is ‘Surviving or Thriving?’.

I’ve done a really quick video talking about my experiences of low mood in the past – and whilst my IBD has been part of that, it hasn’t been the whole story…

So my advice would be, if you are feeling low, or that something isn’t right – talk to someone, and then get some support. The mental health aspects around IBD are not always at the forefront of our treatment plans, and surgery in particular can create or amplify issues – so don’t leave it unchecked and untreated.

Look mum I’m on the tele!

Today at work I had to drive to a meeting, and as I was driving my phone started going a bit crazy in my pocket. When I arrived it became apparent I had been featured (well my picture) on ITV daytime show Loose Women who this week launched a campaign about body image using the hashtag #MyBodyMyStory – fellow IBD & Ostomy blogger Shell Lawes (who is hosting #IBDHour this month) spotted this and encouraged those of us in the IBD and ostomy comunity to get invovled, so I sent a tweet last night and then forgot all about it.

So three minutes into todays show, this image graced the nations screens!

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This particular picture is about two years old, and I’ve put on a bit of weight since then, but you can just about see my scar and obviously see my bag.

There are people with IBD and ostomies who would not be comfortable doing this, and there will be people who ‘don’t want to see it’, so by taking part hopefully it normalises ostomy bags – the show has apparently shown at least one ostomy image each day this week. And well done to the Loose Women for allowing so many people to share there bodies and there stories.

You can watch todays show for the next week on the ITV Hub.

Shell has been capturing the images of those people in the IBD & ostomy community and sharing them on her Instagram.