Category Archives: #HAWMC

So about these #HAWMC blogs…

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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…

Yahoo Answers Post – #HAWMC Day 10

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Yahoo Answers Post – Pretend you are writing a
question about your condition – it can be as silly or
humorous as you want. Now answer it.
(Remember: Your answer can be just as silly)

So I wasn’t familiar with Yahoo Answers. I’ve had a look, and I don’t think I’ll be a regular visitor.

It seems to be one of the places you can get some really bad information. There is loads of really bad information about IBD out there – people suggesting cures (there is no cure) or insisting that a diet can relive all your symptoms (some people have some success some of the time – but it is not universal).

I don’t have the energy tonight to create humourous answers to a false question I’m afraid – but always consult your medical team and don’t really on the wisdom of the internet!

 

 

A Perfect Day – #HAWMC Day 9

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Happy Hump Day! No denying life can get hectic,
but let’s take a mid-week break to fantasize our
ideal day! Would you go somewhere? Who would
you spend it with? Have you had this day? If not –
how could you make it happen?

Being a working parent it seems like a while since I had a day to myself – and don’t get me wrong I love spending time with my family. I’m particualrly looking forward to next Friday when I get to drive an Aston Martin!

So, I also love food, so I would probably build a day around that, starting with Eggs Benedict for breakfast – preceeded by a swim. Because of issues with various leaking, I’ve not been able to swim for many years, and I really enjoy it as well as it being great exercise.

Breakfast done, some time in the park or at the beach with the family then lunch – spagetti vongele for me, pizza for the boy.

In the afternoon the cinema, followed by dinner at Lumiere in Cheltenham with my wife.

I’ve done all the bits – but never the full day!

Little Engine – #HAWMC Day 8

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Little Engine Post. Write a list post with 10-15 lines
that start each with “I think I can…” Write 5 lines at
the end that start with “I know I can.” They can be
big goals or something that’s been on your to-do
list for the last few weeks- it’s all up to you.

I think I can… raise awareness of IBD through my blog and social media

I think I can… support other people’ with IBD through interactions that are open, caring and non-judgemental

I think I can… keep building on my new found ability to do more parenting and spending time with family and friends

I think I can… find new ways to tell and share my story

I think I can… use video better in my advocacy

I know I can… use the NHS in all it’s aspects effectively

I know I can… Work hard and achieve my professional ambitions

I know I can… persevere with my chronic wound- it will heal

I know I can… Continue to grow #IBDHour

I know I can… Return to poetry writing
What do you think?

The longest journey starts with a first step – #HAWMC Day 7

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Was starting your advocacy journey a hard
decision? Were you anxious and hesitant or were
you excited and ready to share your story? Tell us
how you chose to start advocating for your
condition.

I started sharing my story with Facebook posts to keep friends and family up to date. I had a blog, and when I had surgery approaching decided to use that so it was accessible to others too.

So I didn’t really think about it – it just happened. What I then realised is that there were lots of others out there sharing stories, and that there was a bigger audience than just friends and family. IBD is an invisible illness both in the sense that you can’t see it from the outside, but also it is not well known.

So from just falling into it, I am now excited about being an advocate, sharing my story and helping others.

Superpower Sunday! #HAWMC Day 6

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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.

My channel of choice is… #HAWMC Day 5

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Are you all about 180 characters or less? Do you
enjoy shooting the perfect photo? Or perhaps love
sharing posts on Facebook.What’s your favorite
platform to get your voice heard and why?

This is a tricky one. I love my blog and writing it, crafting a story and getting excited over stats. When I share it, Facebook is the place that I get most hits from, and there are some great groups out there to connect with other patients.

I love Twitter – so much so that I started #IBDHour in September this year. And Instagram with it’s combination of photos, hashtags and no character limit can also be great (when I remember to take a photo). I’ve also recently got into Snapchat which has been really interesting too…

So, I guess I haven’t really answered the question…

Erm…

Right, Twitter is number one – follow me @doobarz and also @IBDHour

Facebook is number two for the groups

Then Snapchat – I’m Doobarz on that too

And then Instagram – can you guess my username?

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

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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

Quote Me Happy – #HAWMC Day 3

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‘I ATE’NT DEAD’

This quote – which I suppose is more of an inscription comes from The Discworld series of books by the late Sir Terry Pratchett. I recommend them to you.

Specifically, these words are used by Granny Weatherwax on a sign when she is ‘borrowing ‘- sending her mind into that of an animal – leaving her body lifeless and so as to avoid any unfortunate funerals.

I was already a fan of the Discworld novels when I had my first hospital admission for ulcerative colitis and my friend made a sign to hang on my hospital bed stating quite clearly that ‘I ATE’NT DEAD’.

For those who don’t know – on this visit I nearly was dead. It still feels weird to say it. My colon was so distended it was close to bursting, and after the operation to remove it I developed septicaemia and needed a further operation.

And so when things are tough it is that quote that I think about. I’m still here, fighting, living.

My writing process – #HAWMC Day 2

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My writing is pretty sporadic. One of the weird things about blogging about your health is that when you are ill and have interesting stuff to write about – you might well not be up to doing it. When you are well and could write – you don’t have much interesting stuff to say!
I am definitely a when I get inspiration style writer (rather than having time each week for example) and if a post has really captured my imagination I tend to just bash it out and publish – if I don’t get it done it tends to stay in drafts (I’ve got one post I am really struggling to finish at the moment!)
I like to include links in my posts to direct readers to information or resources they might find useful, and that sometimes takes time. I’m also trying to get better at adding photos to my posts, just to liven them up a bit!
Let me know which of my posts you’ve enjoyed by commenting below, or what you’d like more of!