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.

Guest on The IBD & Ostomy Support Show

IBD Show Logo

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!