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!

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.

 

 

 

What to write?

Sometimes I really struggle with what to write about in my blog. As the main focus is about my inflammatory bowel disease and subsequent surgeries, sometimes there are periods when not much is happening, which don’t make for great reading.

Right now for instance, I am still having the wound from my surgery 12 months ago packed daily. I am waiting to see a plastic surgeon to see if anything can be done about that wound. And there is an infection in it so I am taking antibitoics. Other than that, health wise I am OK (I have a bit of a cold but it’s not too bad – I had my flu jab).

My blog has always ben about my journey, so when nothing is happening, it makes the updates harder to do. As such, I don’t have a huge following, and most of my readers are friends who read it via facebook. Of course, if I don’t post regular updates, then I won’t get more readers… so it is a problem.

The other issue is that I am pretty busy. I work full time, and by the time I have come home and got either dinner ready or the toddler to bed, I’m not at my most creative. I have a few ideas, but never seem to have the energy to develop them. It’s hard to know if this lack of energy is IBD related – fatigue is a huge issue – or if it is my body trying to grow a new buttock, or if it is just life in general.

However, it is helpful to me. So I shall continue to try. I’d like to get into video posts (vlogs) but need to get myself an iPhone adaptor for my tripod. And maybe some lights…

What I have discovered recently is there are some great IBD blogs out there, from a range of people at a range of stages in there journey. I’ll put a list together. Maybe reading more of them will help me find my voice…

 

My IBD Story Part 2 – #IBDAwarenessWeek

This is part two of my IBD Story. In part one, I ended up in hospital, and left with a stoma…

It took a little while to get back to any kind of normal. I was self-employed at the time, and had to claim income support as I was unable to work. I still don’t understand how anyone could falsely claim benefits, it was a pretty mammoth task to make a claim.

Having been discharged in September, I managed to get myself a new job in December leaving my temping and other bits and bobs to become an arts youth worker. I returned to fencing training, gained weight and was pretty healthy. I managed the bag OK – a few leaks but nothing major.

I had a number of meetings with a colorectal surgeon to discuss the possibility of an ileo-anal pouch, a kind of reversal which would rework my internal plumbing, eventually removing the stoma and letting me poo sitting on the toilet again. You can read more about pouches here. And so in August 2006 I was admitted for the pouch formation surgery. Another big slice down the middle. Recovery was OK, although the new stoma – a loop ileostomy – was very flush to the skin and much more difficult to manage. I returned to work in November, but only managed a day – I was plagued with pain in my bottom. I needed stronger and stronger pain killers. Examinations were inconclusive. I sometimes had to get up in the middle of the night to have a bath.

On the 2nd January 2007 I woke up in the middle of the night to go to the toilet. I couldn’t get myself out of bed, my legs just didn’t seem to want to move. I assumed I was just really tired and went back to sleep. That morning, I could still not move my legs – my knees had swollen up. After much wrangling a GP visited me at home and prescribed (eventually) an anti-inflammatory. I saw my consultant again, and he sent me for a second opinion.

Enter The Professor

I went to see Professor Nicholls, who had worked alongside Alan Parkes to develop the pouch technique. At this time I was a private patient, and the consultation at The London Clinic was like entering a different world. I was booked in for an EUA – an Examination Under Anaesthetic. This revealed that the rectal cuff had completely denuded of lining. When my colon was removed, a rectal stump was left (which would allow the internal pouch to be connected). It was this tissue that was affected. The solution would be to remove as much of that tissue as possible, and then hand stitch the pouch just above the anus – this was how the operation was originally done, before the advent of the surgical stapler which leaves more of the rectum intact, but reduces time under anaesthetic. I was booked in for surgery in February.

Another laperotomy. Still a difficult stoma to manage. More MRSA. However, the pain was much reduced. Eventually, I returned to work, having just a short break in June to have my stoma closed and my pouch activated. Following that minor procedure, whilst walking around the hospital to try and get my guts going again, I produced a 10 second fart. It was a proud moment.

So, it had been a tough couple of years. However, I had my pouch, so things should get better, right?

Challenge Me!

Just before I went back to work, I signed up for the Duke of Edinburgh Award Diamond Challenge. This year marks 60 years of the Duke of Edinburgh Award, and as former participant and gold award holder, as well as a former leader and manager for the award scheme it was something I wanted to get involved in.

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At my Gold award presentation at St James’s Palace, shortly after my colectomy in 2005

I have some fond memories of my D of E experiences, from volunteering in a residential home for my bronze award, to learning to play guitar and improving my public speaking. The most high-profile element of the award is the expedition, and from trekking around Rutland water to the wild country of Derbyshire & Mid Wales and camping in the wrong place having come off the peaks in the fog. I am still in contact with some of the people I took part int he award in, and I believe in it as a way of developing as a person for young people. It’s not perfect, and issues around accessibility need to be improved – but then nothing is.

So what is the Diamond Challenge? Well, it can be any personal challenge. I have a former colleague who is doing a trek in the Scottish Highlands, someone else is giving stand up comedy a go. Money raised from these challenges will go towards making the award more accessible to young people across the UK.

In my current uncreative and unimaginative state from the pain killers I’m on, I am appealing for ideas for a challenge. It needs to be completed by 31st December, and realisitically as I am not allowed to start any real exercise until the end of July, a demanding physical challenge may be ambitious – I could probably manage a day walking if that tickles your fancy!

So my plan is to appeal for ideas from now – you can leave a message on th eblog, tweet me, comment on Facebook or send me a message in Snapchat or Instagram – @doobarz for the social media – then I’ll have a poll of the ideas in July and announce my chosen challenge around my birthday!

Get thinking!

Take a walk on the wild side

I have managed to convince my wife and parents to take part with me in the Walk It! for Crohn’s & Colitis UK at Rutland Water on 1st May.

I have now pretty much recovered from my surgery in January, and have started back to work on a phased return. Walking is pretty much the only exercise I can manage at the moment, so it seemed like a good thing to do to take part in a national awareness raising event (the walk is one of a series around the country) and to raise some funds for CCUK too.

If you’d like to sponsor Team Harris, you can donate via our Just Giving Page – https://www.justgiving.com/TeamHarrisRutland

Aside from a small bit of wound healing I am good to go, and recovery has been going very well – I’ll do some more blogs about that soon!

The rise of online

There are now many, many things we can do online. I order my ostomy supplies online. I make my GP appointments and request repeat prescriptions online. Our gas and electricity is supplied by a company that is online only. I interact with other IBD suffers (many of whom I have never met) via Facebook and the ia forum.

I am able to read the opinions and stories of other IBD sufferers via their blogs, or see there tweets and Instagram posts. And all of that is great.

If we stick with the UK for a moment, there are however a number of groups of people who can’t access the online world in the same way as me. Those living in rural areas for example who don’t have sufficient speed. And some older people (and I’m really not sure here what would count as older) are less confident or competent online. It is now not unheard of for websites to crash – Adele tickets anyone? – due to high demand, leaving the people on the phone very little chance of getting through.

And recently, it is not just websites that replace shops, but online clubs – a subscription service that makes a regular delivery – now seem to be on the rise. I myself have two current subscriptions – the following links will take you to the sites via my ‘recommend a friend’ links. The first is with Cornerstone for shaving supplies – I’ve been using them since November and am very pleased with the shave – and the second is with Flavourly for a monthly box of craft beer. I had a gift of a spicebox subscription for my birthday from the Spicery.

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I also recently tried out Musclefood.com after a friend recommended it – they deliver chilled meats and other high protein products. Because I am a bit of a social media floozy and I started liking these companies on various streams, I then started getting recommendations for other, similar sites. I have seen at least one other shaving club, several beer clubs and another protein/ meat website.

This is on top of gin, cheese, chocolate and charcuterie clubs. As a business model, I guess  it makes sense – cheap premises, easy access (via the net) for your customers. And so far I have not been disappointed. IT does mean that our high street is having to change – if you can order everything online, why would you leave your house? It is a little scary, exciting and – when my mobility was limited post operatively – very useful.

Is there anything you wouldn’t buy online?

 

 

The Day We Caught the Train…

So I recently trieds getting the train to work. My commute is about 24 miles, and would take about 45 minutes if there was no traffic. Sadly, there is lots of traffic, and I regularly queue at various junctions, roundabouts and places where two lanes become one. There is also the issue of parking – not enough spaces for the all of the people. I checked out the Car Sharing scheme, but none had exactly the same journey, and going ino Bath would make the journey even longer.

So I decided to check out the train. The journey was 1 hour 15 minutes, so a little longer, but I would be able to read, or sleep, or make use of my much neglected 3DS. It costs more – £12 for a day return, and as it was a horrible wet day, a few pounds to park at the station too.

The train was on time, and not too busy, so I quickly found a seat. Then I encountered problem number 1.

I’m 6’2″, and most of that is in my legs. It was not comfortable. There were some seats in bicycle storage areas which would have given me more leg room, but these were, eventually, used for bicycle storage.

I voiced my view on Twitter (see above) and was pleasenetly surprised to get a reply:

As First Great Western seemed to be up and about early, I decided to ask about the onboard facilities. This was something I should have thought about before I boarded to be honest, but as I hadn’t, I decided to test Jess’s knowledge of the rolling stock.

Now as it happens I didn’t need the facilities – on the way to or back from work, but I wonder what the Train Manager might have come up with? Any thoughts?

So, I have ruled out the train as a way of getting to work ona regular basis for me – too expensive, too uncomfortable, and no toilet. And no rum and coke or dirty jokes – in fact hardly anyone said a word.

This post is part of a series telling my #StomaStory. Please share it, and if you’d like to donate to Crohn’s & Colitis UK and the Ileostomy Association, you can via http://uk.virginmoneygiving.com/RichardHarris19

Going back to work!

Tomorrow will be six weeks since my surgery. This means a number of things. I should be able to start driving again, and doing a few more things (I need to double check with the car insurance people though).

It also means that my sick note will finish and I will be fit for work again! In terms of my recovery it has gone really well, and apart from a cold over the last few days (including a really nasty earache) I reckon I am ready to go back. I will be doing so on a phased return, so easing back in slowly over about four weeks.

It has been great to be able to do some things – walking for example – that I could not do before surgery, and whilst I haven;t achieved everything I wanted during my recovery (there are still uncompleted XBox games and unread books) I am pleased with what I have been able to do.

The six weeks will also mean I can do more around the house and with the baby, so whilst I hope to be able to continue to blog regularly, please forgive me if I slow down a bit. I have had some lovely feedback and comments on the blog, and now have 50 follows on WordPress. I don’t know if that is good, but I am happy with it!

With that in mind, I’d love to know what you would like me to write about. Do you want details of my stoma, bag and the stuff around that, or are you more interested in life with a stoma? Leave me a comment and I’ll try and write about it!

I know I also need to finish my back story, up to the recent surgery, so will try and get that done too.

I am also taking place in the Instagram #iauibd365 hashtag – daily photos of life with IBD from people all around the world. You can check out my Instagram at https://instagram.com/doobarz/

Right, I had better get to bed – work in the morning!