To See You NICE…

IMG_2183

So last week I journeyed to Manchester for my first meeting of the National Institute for Health & Clinical Excellence (NICE) Ulcerative Colitis (and Crohn’s Disease) Guideline Committee. If you follow me on social media, you may have seen my stressing about a laptop issue which resulted in some late night computer fixing, learning all kinds of new skills…

Due to big taxi queues (there was European football in Manchester) I walked from the station to my hotel near Manchester Arena. I was struck by the numbers of street homeless – seemed to be many more than in Bristol – which was sad to see.

The next morning after the laptop rebuild was done and the files backed up I set off to find the NICE offices, which are right in the centre. The meeting room was really nice, and the chair and NICE Project Manager introduced themselves. I also met the other lay member, Sophia.

We started with introductions – various NICE staff with different roles and skill sets, and then committee which is made up of colorectal surgeons, a GP, a pharmacist, an IBD nurse, gastroenterologists and a dietician. It was really interesting to hear from the Public Involvement Advisor, who underlined the importance of lay member involvment, and spoke about how lay members have;

different expertise, equal status

We lay members are not expected to have the full technical or scientific knowledge, but we do bring a different and needed perspective to the committee. It was very reassuring when faced with a room full of medical professionals!

The guideline we are working on is around the use of certain medications that are used for people (adults and children) with mild or moderate ulcerative colitis – at least to start with, as the full scope is still being agreed. There is still a need for some Crohn’s lay expertise for the committee, and you can apply here but hurry! The deadline is 5pm on 11th December.

We had input from various NICE team members and how the process will work, health economics and network meta-analysis. It was an intense day. I did a little input about my journey, as did Sophia and these were well received.

Apologies if you are finding this a little short on details – the actual content of what we are discussing has to remain confidential, and it hasn’t all been agreed yet. What I can say is that there was a real focus on the exact wording of questions and search parameters for the research we want to look at, and that all of the NICE staff were very supportive when questions were asked (often by me because statistics was never my strongest point).

We’ve since been asked to comment on a final draft, and our next meeting is in January – so I will update you again then. If you have Crohn’s, or are a carer for someone with Crohn’s do consider getting involved.

 

 

 

 

More wound news…

Back in September I posted this update about my wound and mental health. I had some really lovely feedback and messages, so thank you to all the well wishers.

Dealing with the mental health first – I saw the GP, and was signposted to South Gloucestershire Talking Therapies also known as IAPT (Improving Access to Psychological Therapies) and had an assessment consultation which assessed me as having moderate depression/ low mood. I’ve been assigned to a course for support and although I have to wait a while for one that fits in with work and everything else, but have support at work and from my family too. Opening up about it has really helped, but I’m going to see it through and get the help.

In the last update I said we were bringing out the big guns and going back to vac therapy as the PICO dressing hadn’t been able to cope with the exudate. So we started the Acti VAC therapy with a little portable unit (see picture).

IMG_1770

Sadly it was not possible to maintain the seal which seems to be due to the position of the wound as much as anything, although it was also still pretty wet – so I ended up having to remove it – in the photo below at work. Vac dressing also includes a free wax, in my case of the buttocks. I also think that being at work and managing a toddler didn’t help.

The Acti VAC pump was pretty easy to manage though – it comes with a little carry bag and doesn’t need to be constantly plugged in, and is nice and quiet. It does take a while to change the dressing, as it has to be framed and then applied, then the seal checked and any gaps filled in.

IMG_1771

Following the failure of this, and been advised to apply something antibacterial, so went back to the Ortem metronizadole ointment which once again did some good stuff. At the same time I wrote to my surgeon requesting that either I be admitted for the vac therapy as an in-patient – or be referred to the Wound Healing Unit in Cardiff, where Professor Keith Harding is the lead consultant. My wife heard about this unit by chance at a conference, and I’m very glad she did!

Patients I speak to online often seem reluctant to ask for a second opinion. Perhaps they fear upsetting their current team or consultant, but this has never been my experience – in fact twice I have had consultant surgeons say they want me to see someone else because either they recognise they can no longer help me, or they just want me to hear other options. My consultant referred me to Cardiff, and because of a cancellation I am going there on Wednesday, which has pleased everyone involved.

In the mean time, the tissue viability nurse has started me on a different negative pressure therapy – SNAP by Acelity (see picture below).

IMG_1938

This silent, spring based unit has a dressing more akin to a stoma bag, so it has been much better at maintaining the seal and seems to be working well – however I am not going to be cancelling my appointment with the Prof just yet…

So, that is my little health pdate – I have some other stuff to update on too, but now it is late and time for bed (after I schedule this post!). Until next time, which will feature nudity (sort of).

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…

 

Happy New Year!

Hi everyone, sorry it has been a while. the run into Christmas got me all wrapped up (boom boom) and then over Christmas we passed the stomach bug around (what are families for eh?) so I never got to finish my IBD Story in december – I’ll try and get around to it.

So I started back at work today which was Ok – lots of email! #IBDHour is in a couple of weeks, and I hope to be able to make an announcement about that soon. I also want to redesign the blog…

My wound from the surgery in January still hasn’t healed – we are now 11 months on. I saw my surgeon last week and he is going to refer me to a plastic surgeon to take a look and see if something can be done.

This year I’m trying to reduce my intake of fizzy drinks, and I will try and blog more often – but life sometimes gets in the way.

Have a great year everyone!

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.

My channel of choice is… #HAWMC Day 5

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

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