2017 is here…

So we are into 2017 now. In fact it is nearly a year since my surgery to remove my failed internal pouch, rectum and anus. And my wound has still not healed. I saw the surgeon just before the new year, and am being referred to a plastic surgeon to see if something can be done. Since then it seems to have started healing a bit better, so who knows!

I was thinking about 2016 for me and my IBD. 4 hospital admissions (2 planned, 2 not) and over 200 dressing change appointments. I’ve had it dressed in England, Wales and Northern Ireland, mostly 7 days a week. It has been hugely disruptive, albeit that most of the time it has not been painful. Plans have been cancelled, or not made on the first place.

And although now I don’t have any large bowel left to become inflammed – so some people would say I am cured – I could still have a recurrance of extra -intestinal symptoms like the arthritis I’ve had before, and of course the IBD favourite – fatigue.

It’s hard to know with a full time job and a two year old to run after why I’m tired sometimes. Is it just life, or is it IBD? Right now. my body is also trying to heal the wound cavity which takes extra energy too. And that make sit very easy to do nothing else. Exercise is tricky with a wound, but seeing friends, hitting the spoken word scene or even just going out for a walk all have taken too much of a back seat in the last 12 months.

That also means the blog doesn’t get as much attention as it should, and I’ve been thinking about that. I’ve just given it a new look (let me know what you think) but there are some great IBD blogs out there, so I need to think about what I bring to the party.

Anyway, it’s getting late. I still need to plan #IBDHour for Thursday and write a rant about the NHS… Have a good rest of weekend.

Goodbye Pint of Poetry!

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On Wednesday it was the 10th birthday, and also the final night of A Pint of Poetry & A Dash of Drama – a spoken word open mic night I co-founded back in Peterborough with my friends Mark & Summer (pictured). Although I left in 2010 I’ve been back a few times, and was honoured to return and perform and compere part of the evening. You could tell I was a bit rusty when I introduced one of the acts with the wrong gender…

I’ve got a lot of very fond memories of PoP, which started me writing poetry. Now I don’t pretend to know any of the rules or forms, and most of what I write is pretty light-hearted stuff, but with everything that has been going on with my health I decided to write something inspired by that. There is a link here to a very rough recording I made of it – it’s called ‘Stand Up Wee’.

I really enjoyed getting back in front of the mic, and am definitely going to try to build it back into my life along with getting fit. What I’d ultimately like to do is put a spoken word show together – The Ballad of Gutless Dick. So watch this space.

Thanks to everyone who came along over the last 10 years and made PoP so very special. There wil be a new night soon from some of the team, and the scene has really grown. I’m off to track down some nights in Bristol…

Recovery: Week Seven

Recovery continues, but seems to have slowed down which is frustrating. Although at a fairly moderate level, the pain where my anus was removed and where the hole is now healing is pretty constant, and worse than it was a few weeks ago. I do have a photo but I’m not sure I’m ready to share it yet! If I can work out how to hide it perhaps I will.

I have been able to start driving again, but to be honest haven’t really felt like going anywhere. Am being seen by surgical team again on Friday, but I know it’s healing – just slowly.

So bit of a boring post really, no exciting news – good for me but not great for blog content!

Four weeks on…

Firstly apologies for the lack of posts. It’s been for a number of reasons – my parents have been staying with us to help out with the two and a half stone baby I’m not allowed to lift for another fortnight amd have been very good at encouraging me to do things and get out and about.

I’ve been pretty tired, which is a main stay of recovery really and sleeping a fair bit, and early bed too.

Mostly though it’s because things have been going really well and I don’t have much to say! The partial small bowel obstruction resolved itself without any major intervention, although I had to stay in hospital a week (longer than my admission for surgery!) whilst we got the stoma output back under control. I’ve had one trip back to the hospital since discharge because the bottom wound was a bit leaky, but this was swabbed and deemed to be tissue fluid only leaking from the fistula. I have a follow up on Tuesday with the consultant but all seems to be going OK. I’ve got my appetite back and have put a bit if weight on which is good.

Before I went in my wife asked friends to write me letters which was really great. I’ve really enjoyed reading them and have now replied to about two thirds. She also wrote me a whole load of little letters with little photos and cartoons in to make me feel better, plus a colouring book and an Aston Martin driving experience (I think she thinks I look like Daniel Craig).

Of all the things that aid recovery – sleep, quality food, gentle exercise – the love and support of my wife, son, parents, family and friends is a really positive force, and I am very fortunate to have them in my life. I see on various forums and Facebook groups people who don’t have the support and understanding, and really feel for them. So thank you to them/ you.

I shall leave you with a photo of my new hair cut – it was long overdue and the hair sweeper in the barbers earned his money.

  

Get back on the horse!

I’ve been back at work for a little while now, and for a few weeks full time. It has been a fairly quick return, and apart from a bit of tiredness, I’ve got back into the swing of things.

I’ve also been determined to get back to some level of fitness. As I’ve said before, I have been unable to do any real exercise for a few years – either due to pain, fatigue or both, so I wanted to make a quick, but gentle, start, and not put it off.

Rather than joining a gym, I’ve opted to have personal training sessions once a fortnight, do some running, some cycling (when I get my bike serviced, it’s not really been used for 10 years) and try and find something else for once a week. This weekend I went to a bootcamp session organised by my PT and her cousin, It is fair to say this was too much for me to handle – I managed 20 minutes of the hour before having to stopm which was frutrating having managed my 1 hour PT session earlier in the week with no problems. However, the bootcamp (which I’d never tried before) was much more intense, which should probably not have been much of a surprise, but there you go, best laid plans and all that. It is something I would like to go back to sometime, but I think it will be a while yet…

I’ve been using apps on my phone and iPad to track my exercise and my food intake. Part of the PT service is looking at your diet, and I duly submitted my diet sheets. Too much processed sugar and fast food (in fairness it was a bad diet week, and fast food is quite unusual for me). So today I made some hummus and bought some smooth peanut butter, as well as getting some better snack options for both the office and working from home – since my surgery and recovering, my appetite seems to have been huge.

So I’ve got a 1.5 mile running route worked out, and my aim is to be able to run it all without stopping – I’m currently running as much oif it as I can then jogging/ walking alternate lamp posts.

My next run is on Tuesday morning, so feel free to tweet encouragement!