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…

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.

The IBD & Ostomy Support Show – Guest Spot!

On Thursday 11th May I was a guest on The IBD & Ostomy Support Show, and you can view the show on YouTube if you missed it.

It was great to be able to add a male perspective to some of the ‘Ask anything’ questions, as well as share my story, experiences of immunosuppressants and talk about IBDHour (which returns on Thursday by the way).

Do check out the video, and don’t forget to like, comment and subscribe to help the girls build the following, and check out their blogs and social media too!

Louise – Crohn’s Fighting – BlogFBInstagramTwitter

Rachel – Rocking2Stomas – BlogFBInstagramTwitter

Stephie – Colitis2Ostomy – BlogFBInstagramTwitter

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.

Guest on The IBD & Ostomy Support Show

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The IBD & Ostomy Support Show has been going for about 7 weeks now – I wrote a quick review of the first episode. I am going to be a guest on the next episode this Thursday 11th May at 8pm – you can watch on YouTube.

I’ll be talking about IBDHour and my IBD journey, and the show has two themes – immunosuppressant and then an ‘Ask Anything’ section – you can ask questions in advance via the Facebook page and take part in the survey here.

I’m really looking forward to taking part, and hope you can check it out!

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.

 

Post EUA Update

So a few days have passed since my Exam Under Anaesthetic (EUA) on Wednesday. The procedure went well and I was discharged as planned on the same day. No collection was found and there was no evidence of anything being left behind which has stopped it healing.

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This is of course good and bad news – no evidence of infection or collection is good, but it does mean we don’t have a reason for the slow healing! In between the plastic surgeon appointment and the EUA I did have a weekend where the wound bleed quite a bitnmore than it had been – it may be that if there was something physical there it has now passed.

So whilst I did not come away with any answers, I did come away with a new treatment plan. I have been prescribed a medication called Ortem – a topical metronizadole ointment. As I discovered when I tried to get it fromt he pharmacy (mor eon that in a moment) it is not yet fully licenced in the UK – however there has been some very encouraging research into this kind of wound being treated with it.

Now the hospital pharmacy didn’t have it, but I was told it should be available from my usual pharmacy. I got home mid-afternoon, and was going to have a little sleep, but decided to just call them and check if they had it – I thought perhaps they might need to order it in However, it didn’t appear on the computer…

Now at this point, in need of sleep, a bit spaced out I faced a dilema. Having been told by the hospital they didn’t have it, but community phramcy should, and then by community pharmacy that they don’t have it but hospital might it would be very easy to get pulled into an endless loop of calling consultants secretaries and hoping for call backs, so I put my best patient advocate hat on and got on Google…

Within 5 minutes I was speaking to Natalie at the manufacturer, who had advised me that the drug was unlicenced but available as a special order, and that my regular phramacy already have an account! She just needed to email them an order form…

So I went down to the pharmacy to try and get things moving – Lloyds have there own process so had to call head office who were not immediatly able to spring into action… The final result of this is that the drug is now en route via courier, but because of the bank holiday I won’t get it until Tuesday – so we are getting there slowly…

Since Wednesday I have been really tired – napping each day for several hours despite good nights of sleep too – although I didn’t sleep well on Wednesday night. The left side of my face under my glasses has also swollen into what could be the BIGGEST SPOT EVER – but hopefully I can treat that before it happens.

So, it’s lots of sleep, some more patience and then maybe this wonder ointment can do it’s thing…