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?

My IBD Story -Part One #CrohnsandColitisAwareness Week

So as it’s Crohn’s & Colitis Awareness week, and I decided it is as good a time as any to recap my own IBD story. I’m going to start writing, it might get split over a few posts, but here goes…

Diagnosis

In early 2005, I noticed some blood in the bowl when I went to the toilet. Not a lot, but a bit. I’d been diagnosed with IBS (Irritable Bowel Syndrome) the year before, but didn’t have any of those symptoms. I thought it was probably haemorrhoids and got some over the counter cream, but when 3 months later it hadn’t stopped, I went to the GP. They did some tests, blood and stool I think, and I was referred for a colonoscopy – a camera up the bum.

Aside from the preparation for that being fairly horrific (top tip, if you ever have it, take the day off work) the camera test was OK, I was sent away and a week or so later went back to the GP and was told I had ulcerative colitis and was given some suppositories. I don’t remember seeing a hospital consultant, or being given any information – if I was I certainly didn’t properly take it in or appreciate what it meant to have this chronic condition.This was now May.

First Flare

In August, I was working supporting young people on a residential. I wasn’t getting much sleep because they did like to stay up late trying to start relationships and smoke out of the windows, the young scamps. I was getting some horrible crampy pains, but the IBS medication was helping. On the Friday I went to the GP and was given some steroid foam enemas. Off I went.

That Saturday I supported a group of young people to go to York. I remember on my lunch break gulping down a Burger King and then spending a long time in their toilet with cramping and diarrhoea. I don’t remember the Sunday (I probably slept a lot) but on the Monday morning I was fit for nothing. My mother took me to the GP who looked at me (looked, not examined) and wrote a letter to get me admitted to the local hospital.

More drugs!

So in the hospital they upped the steroid and gave them to me IV, as well as pain relief. They didn’t work. On the worse day I went to the toilet 13 times in the day, as well as over night. I was losing weight, my belly was distended. As a last gasp they tried Cyclosporine which is used as an anti-rejection drug after transplant (it’s a strong immunosuppressant).

That didn’t work either. The surgeon came around one Sunday, my belly was measured and was still swollen. I was told I was at risk of developing toxic mega-colon and by bowel perforating, and I was put on the surgical list. I was visited by a stoma nurse, a cross was put on my abdomen and I was wheeled down to theatre. I’d been in the hospital about 3 weeks at this point. I asked for a shark bite finish.

Recovery – Part 1

I woke up in the surgical recovery unit – just below intensive care. I had a nurse by my bed pretty much 24 hours a day. I had a drain, maybe two, a catheter, a naso-gastric tube, an epidural (I think). Oh, and a big long scar right down my front closed with staples. And a stoma, a little red thing poking out of me into a clear plastic bag.

Despite all this, I felt better. I’d had a metre and a half of diseased organ removed from my body. After a few days I was moved back to the ward, and things were going OK. I had lost a lot of weight by this point so was being fed through a drip (TPN) as I wasn’t yet able to tolerate food, and had just started having water again. unfortunately I developed septicaemia from the TPN needle and there was a probable kink in my bowel. In a matter of hours I went from OK to very sick, and was taken back to theatre, re-opened up and then stapled back together again. Cue another stay in surgical recovery.

Recovery – Part 2

I was moved back to the ward again, and a few days later a doctor came around and drew the curtain around my bed. He told me I had MRSA – detected when I was swabbed post op the second time. I knew very little about it and thought I might die – but it is treatable with really string, vein burning antibitoics. So I had those, and a nasal cream and a special body wash. I had to be barrier nursed, and all my visitors had to don aprons and gloves to come and see me too.

The MRSA was contained, I started eating and drinking again. By the time I left the hospital after 7 weeks I was 3 stone lighter than when I went in – I must have been lighter again at some point during my stay. I don’t have many photos from that time, but I attended my Gold Duke of Edinburgh Award presentation a few months after being discharged, and as you can I see I still look a bit thin.

D of E Presentation

And so I was off into the big wide world to learn to live with a stoma.

IBD Awareness Week 2016

So today is the start of Crohn’s & Colitis Awarenss Week 2016, running from 1st – 7th December.

To start us off, here is some key information from UK charity Crohn’s & Colitis UK.

If you’d like to make a donation, you can text CCAW22 £3 (or any amount) to 70070 or donate online.

I’ll be sharing some stuff this week, if there is anything you’d like to know, get in touch!

So about these #HAWMC blogs…

You may have noticed that they stopped appearing. I made a good start and them written and scheduled to publish for about the first 5 days. Then I did a couple on the day. Then I got behind. Then I had to plan #IBDHour (which went really well, and you can the Storify here) and now I am in hospital again…

So as you know since my operation in January I’ve been having loads of issues getting the wound where my rectum was to heal. I was readmitted in July for VAC therapy, have had magic gels, packing, repeated infections and antibiotics. Last Monday following the latest course of antibiotics, we began another negative pressure therapy called PICO which is a tiny little pump. 


Whether or not it was linked to that or not, by Wednesday I was reporting some pain and a small hole had developed close by. 


On Thursday I felt pretty rough, but wondered if it might be the sickness bug going around work, and by the afternoon felt a bit better. On Friday the nurse doing the dressing wasn’t happy with the discharge from that hole, so in consultation with a GP sent me to the surgical assessment unit at the Bristol Royal Infimary, a department I know very well, and many of the staff recognse me. I should probably sponsor a chair or a bed.


Anyway I was seen and antibiotics were started. The consultant beleived that an abscess had formed, found it’s way out through an old fistula scar and had drained. I explained my recent history and my concerns and am waiting for an MRI scan after it was decided I couldn’t have a CT scan because 1) I’ve had too many and 2) An MRI should show us what is going on. The IV antibiotics continue.

It also meant I missed my Aston Martin driving experience, and lunch with Joanh’s godparents. However right now I just want to be reassured that there is not another collection waiting to feed more abscesses, and that means a few days in hospital…

Superpower Sunday! #HAWMC Day 6

Today’s writing prompt asks me to consider what super power I would have and how I would use it.

When I were a lad, superheros were fewer than they seem to be now in the general conciousness. Superman, Batman & Spiderman, and a bit of Hulk. Now they seem to be everywhere! There is even an IBD Superheros group focused on finding a cure for IBD.

I’ve always been drawn to Batman (argueably not a superhero) bcause he was just a man with a sense of justice (I’m talking Adam West Batman here) and then became as the more recent films developed darker and more brooding, but still a man who trained hard, and had loads of cool gadgets.

Superman seems to have the powers going on – flight, X Ray vision, super hearing, hot eyes and cold breath. X Ray vision might have appealed to my teenage self (because boobies) but I actually think I would rather have MRI vision.

Along my journey with IBD I have had many MRI scans. And they have investigated many interesting things. Has my internal pouch healed? Is there an abscess? Why do they keep recurring?

I’m also aware of a number of people who are very fearful of the tunnel style MRI scanners, so a super hero who could just look and see would be helpful to them too.

Perhaps super speed would be good to chase after my toddler, or flight to beat the rush hour on the commute to work. Wolverine has super-healing, which would be useful at the moment with this chronic wound – or some kind of limitless energy – maybe being powered like Iron Man?

Of course many superheros are flawed – humans who have been given a power somehow, and wrestle with how to use it for the best – or the worst. And, as Uncle Ben says – ‘With great power comes great responsibility.’ – so I’ll decline having a super power, and just try to be an awesome human.

A letter to my newly diagnosed self – #HAWMC Day 4

Hi Richard,

So, you’ve just been told you’ve got ulcerative colitis – so at least that drink that turned your bowels into Niagara Falls wasn’t for nothing. You’ve got your twice daily suppositories and your going home, and you’re not going to think about it much. It’s 2005 and you don’t routinely Google everything you’ve never heard of.

You should. You should find out about this disease, because in 3 months time it is going to hit you hard. You don’t know right now how serious it can be, and whilst nothing can prepare you for the double-digit toilet trips, stomach cramps and complete lack of energy you are going to have, it might be better to know that having your colon out is even a possibility. So do that, look into it.

The other thing you need to appreciate is what it means to have a chronic illness. For life. Incurable. And for you there are going to be long periods when you are ill. Can’t work. Can’t walk. Shit all over you and your bed. And *Spoiler Alert* your wife.

You are going to have toxic drugs pumped into your system. Experience Tramadol dreams and morphine itch. You will take drugs to combat side effects of the drugs you are taking to prevent side effects of your drugs. You will marvel at the commitment of doctors and nurses and others who work in hospitals. You will curse doctors and nurses and people who run hospitals.

If that sounds a bit bleak – well at times it will be. However, you will also live a life. You will achieve things. You’ll find a career for yourself, go back to university. You’ll move house and start a family. And you’ll tell your story and be surprised that people want to hear it.

Take notes – it will make it easier later.

Remember there is no point in not telling the doctors how bad things are when they are bad.

So that is my advice from 11 and  a half years down the line. I’ll see you when you get here.

Richard

Getting to know you… #HAWMC Day 1

To try to boost my blog content I’ve decided to take part in the Health Activist Writing Month Challenge. This is a daily writing challenge with prompts from the lovely people at WEGO Health who are running the awards I’m nominated in – and a big thank you to all of you who endorsed my nomination, the finalists are announced in December.

So today is about introductions – let’s get to know each other! What drives you to
write about your health? What do you want other
Health Activists to know about your condition and
your activism?

I’m Richard, 35 and I have ulcerative colitis, a form of inflammatory bowel disease.

I write started writing about my health as a way of dealing with what was happening for myself, and then as I approached surgery to form a new stoma wanted to share that journey. I had the surgery and have kept writing to try to raise awareness of inflammatory bowel disease and living with an ileostomy.

WP_20151202_004.jpg

My activism is mostly online – although I did a year as the coordinator of my local Crohn’s & Colitis UK group – and you can find me contributing to various Facebook groups and forums. I also started #IBDHour – a Twitter hour for IBD chat in September 2016.

I’m hoping (work and daddy commitments allowing) to write a book bringing together my blog posts and some new writing and ultimately I’d like to create a spoken word show about my experiences.

So, that’s me – enjoy the next thirty days of writing, and do get in touch if you have any questions!

 

Wound News – October Edition

Well I never thought I would be writing this post.

To recap, my surgery was at the end of January – a major operation to remove my failed internal pouch, rectum and anus. There were two wounds – the big stapled one at the firnt and the smaller one at th eback. This initialy healed well, then broke down and got really painful, and I ended up back in hospital in July for vac therapy for a week.

The vac therapy was syccessful in awakening the wound and remonding it had to heal – but it was still pretty big (about 7 coms deep). Since then it has been variously packed, had a gel treatment and is now being packed agin, We have got down to every other day, but it is still going on, And on. And on.

It isn’t painful which is good. It is still a bit leaky, and I have had to go back to the big inco pads in order to save on laundry. I’ve gone back to work full time, but it is really frustrating. The nurses at my practice, who have all had to endure far more of my bottom than should really be asked of them, have been great, and a few blips aside the bits of the NHS are now all working together. It is however taking much longer than I was prepared for.

As ever I am trying to be positive, but this week we are going on holiday as a family, and I had really been looking forward, this year, to be being able to swim with my little boy. He loves swimming, and his whole face lights up in the water. And I’m not going to be able to. Which means his mum is going to have to do it all. Again.

And I know it’s not forever, that it is getting better each day. It is frustrating to not be able to exercise, to still be wearing pads, to need shares in Parazone toilet wipes and be taking so many appointments at my local practice – all whilst returning to full time work and trying to parent and live life to the best of my ability.

Being realistic, I think this could still be goign on In November, hopefully be done an ddusted by Christmas. So watch out for more Wound News – but lets hope there isn’t too much more of it.

What’s this #IBDHour all about then?

So if you’ve been over on my Twitter recently then you might have spotted that I am launching #IBDHour – the first UK based Twitter Hour for Inflammatory Bowel Disease!

I am a massive fan of Twitter, and think it will be a great way to build the UK IBD community – as well as open it up to contributions from all over the world (where the time difference isn’t too much anyway.

If you’re not familiar with the concept of Twitter hours, then they go something like this. At a pre-arranged time, someone (the host) will start the hour off with some questions for discussion, and all the people participating use the hashtag – in this case #IBDHour – and answer the questions and then respond to other people.

The first event is going to be on 15th September at 8pm UK time, and the theme is going to be ‘Support’.

I’m really excited about it, and hope it will allow people from all over to have a virtual conversation.

If your interested in taking part, then follow @IBDHour on Twitter!

A surge in coverage

So in the last few weeks there has been a sudden surge of coverage of Inflammatory Bowel Disease (IBD) and related issues in the media.

Medals!

First off we had the news that two Olympic medal winners have IBD – both silver medalists in the pool. Siobhain-Marie O’Connor of Team GB has ulcerative colitis, and Kathleen Baker of the USA has Crohn’s Disease. They are not the first Olympians with IBD – Sir Steve Redgrave off of rowing is a CCUK ambassador, as is Ali Jawad, Paralympic Weight Lifter. There followed a couple of good articles over on The Mighty about how that might make other IBD patients feel – you can see those here and here.

For me, I say hats off to them. I don’t think I could ever have been an Olympic level athlete before I was ill, and certainly not whilst I have been ill, so it is testament to them that they have achieved so much whilst being ill – long may they have continued success. It also motivated me to finally go and do my first Park Run at the weekend – I walked it, but it felt good to finally be doing some exercise again.

Nights Out

unfortunately the next story that popped up was less positive. An IBD sufferer was on a night out, and had a sudden need to use a toilet. He went to the (open) McDonalds restaurant in Huddersfield to ask to use the toilet, showing his ‘Can’t Wait’ card to security and staff, but he was then asked to leave – you can read more here.

Now I don’t do night’s out very often, but it seems very sad to me that there was no flexibility for this young man to be able to use the facilities despite being able to evidence that he had a need. Perhaps the staff didn’t think that someone with such a requirement should be on a night out at all? I think that this is one of the areas that needs awareness to be raised – we might not be ill all the time, but we sometimes need a bit of extra help!

More Toilet News

Supermarket ASDA (favourite of my sister in law) have taken a great step forward with the signage on their disabled toilets – reminding people that not all disabilities are visible. This is great, although I’ve never had an issue myself, it took me a while to build up the confidence to use a disabled toilet without fear of the stare – and I think having a bag gives me an extra weapon to flash if challenged. I’ve needed them in particular in the last few years when I’ve been wearing inco pads – although not all disabled toilets have disposal bins. If I was in charge, all toilets would be accessible toilets with proper disposal bins. And all car parking spaces would be parent and child sized!

Down With the Kids

Our final piece of news relates to a perhaps ill-advised MTV blog about the movie Sausage Party in which it was suggested that a possible sequel – Colostomy Party – could be a hit. There was some real anger on the various Facebook groups and on Twitter from people with IBD and colostomies that once again these devices were being presented as comical, rather than life saving. This follows on, apparently, from recent references on Eastenders and Hollyoaks to them being something that only old people have, and resulted in a very positive piece in Metro by Hattie Gladwell.

There was a counter argument that it allows for some education and challenge (the saying being no publicity is bad publicity) and personally within the context of the blog I don’t think it the worst thing I have ever seen – however for some people it will reinforce their thinking, so lets hope they also see things like the Metro article.

If you spot any IBD news, do let me know by commenting or dropping me a Tweet @doobarz