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

It’s an honour just to be nominated…

So I was excited today when this popped up in my Twitter notifications:

I have now complted a profile, and would love it if you could make additional nominations via the WEGO Health website – my profile is here – you do need to complete a form to do it, but it’s pretty simple.

I’ll let you know how I get on!