An open letter to my friends & family

 Hi everyone,

So as you know I had big surgery in January 2016. The wound hasn’t healed, and next week I’m going to see a plastic surgeon about it.

I’ve had over 200 dressings applied, which started in May. Most of the time that has been 7 days a week. It has been very disruptive to my life, to our lives as a family. Catching up with missed work. Being tired from growing a new buttock. 2 further hospital admissions.

And that has meant plans have been cancelled. Sometimes rearranged. Or not made at all. And as it has gone on longer and longer, fewer and fewer plans got made. 

And I’ve tried to be upbeat – no, it doesn’t hurt, yes it’s still going on, ha ha, growing a new bum cheek – but it’s getting harder. Hopefully next week will give me a time frame for getting it sorted.

And so this is an apology for plans cancelled or not made at all, birthday cards that came late, phone calls not made.

And I’m not ready to promise, but there is a hope that it will all be over soon. Then plans can be made, games played, meats BBQd and drinks drunk.

So, please bear with me, it has been a bit limbo-Esque, and there is much I want to do once I no longer have a hole in my bottom.

 

 

 

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…

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!

Recovery – Part 1

So after a short stay in the surgical recovery unit I was transferred to a ward. My epidural had been removed and I had a morphine pump. I still had as I recall the NG tube, wound drain and catheter. I was doing OK, although I was being given TPN – this is when you are given all your nutrients through a drip, as I was unable to eat to allow the bowel to rest. I’m sure I must have been getting better because I remember asking for strawberry flavour – this could be my first ‘morphine talking’ comment (there have been a few over the years).

I think it was a Monday I was moved to the ward. I was visited each morning by the consultant. On Wednesday morning the consultant came around about 8.30am as usual, and I was OK. By about 11am I was shivering uncontrollably, and the nurses summoned the consultant back. I think I had been allowed sips of water by a junior member of the team at this point, and I remember the curtain being pulled back around my bed and the consultant dressing down the whole team about this, and then telling the nurse in charge that from that point on only he was to make decisions about my care.

Much is hazy for me of that day which my mother refers to as Black Wednesday. I think I started to vomit lots. I was taken back to surgery – my bowel had kinked and I had developed septicaemia from the TPN needle. So my big long incision was re-opened, and it was back to square one – with more complications to come…

 

This blog post is part of a series I’m writing in the run up to my stoma surgery in January 2015. If you’ve found it interesting, please do share it, and if you can, supported CCUK & the ia by donating at my Virgin Money Giving page http://uk.virginmoneygiving.com/RichardHarris19

How wrong can you be?

So I went on my merry way with my suppositories (mesalazine) doing OK. The diagnosis was in May 2005. In August, I was supporting The UProject a residential for young people at an outdoor education centre. Sleep was scarce, and my guts were unsettled. I was popping Buscopan for IBS for the cramps and was going to the bathroom more than I wanted to. That Friday I want to see the GP who prescribed some Prednisilone foam enemas, and said it was the Ulcerative Colitis, go back if things got worse.

That Saturday I went one trip to York with a group of young people. I remember at lunch time finding a toilet in Burger King and spending quite a long time there. I don’t remember anything about Sunday.

On Monday I was taken to GP by my mum. I didn’t say much. The GP looks at me and sent me to hospital. And I do mean just looked. No real tests or exam. I was I recall quite pale and clammy. I was admitted to Peterborough District Hospital, and that was the end of my summer. I was to be in hospital for 7 weeks.

I was told I was having a severe flare of my ulcerative colitis – at least that was what most of the doctors thought. One doctor was keen to ensure that possible gastroenteritis was explored because of the residential project the week before, but this was soon ruled out. The dosage of steroid I was on was increased, lots of blood taken to check inflammatory markers among other things. One of the things that was done regularly was to measure around by belly to see how swollen it was – and it was pretty swollen.

When the steroids didn’t work I was given cyclosporin – a drug used after transplant to stop the body rejecting the new organ.Whilst this was helping, progress was not fast enough, and so after about 3 weeks the surgeon came a calling and told me that my colon needed to be removed, and a stoma formed (a sub-total colectomy). At this point I was going to the toilet to open my bowels 10 – 13 times a day. I don’t know if you are familiar with the Bristol Stool scale but I was a 7. And a blood stained 7 at that. I was losing weight, was weak and really very very ill. I don’t really remember, because I was pretty out of it. I remember it being a Sunday that the surgeon cam along and told me this was going to happen. The stoma nurse came around an drew a cross on my abdomen where my ileostomy (small bowel) would be coming to the surface.

So I said goodbye to mum and dad as I off to theatre, asked the surgeon to  give me a shark bite finish, and some time later woke up in the surgical recovery unit (which incidentally gave me the best care of any hospital ward I have been on so far) with an oxygen mask and three tubes – a catheter, wound drain and naso-gastric tube (tube to the stomach that goes down the nose), a 12 inch/ 30 centimetre incision down my middle that was now stapled up, plus a couple of drips and an epidural for pain relief. Oh, and a big clear plastic bag over my new stoma to catch my bodily waste.

Although I was quite out of it with the pain relief and coming out of the anaesthetic there was one bizarre feeling – I felt better. And the reason for that? 150cms/ 60 inches of diseased colon had been removed from my body. I was told afterwards that when they opened me up, it was evident that soon my colon would have exploded (not the medical term) and that would likely have killed me – stool in the blood is not a good thing after all. So for me, as is the case for many IBD sufferers who need emergency surgery – my stoma saved my life.

 

This blog post is part of a series I’m writing in the run up to my stoma surgery in January 2015. If you’ve found it interesting, please do share it, and if you can, supported CCUK & the ia by donating at my Virgin Money Giving page http://uk.virginmoneygiving.com/RichardHarris19