What happened in Wales Part 2

So last week I journeyed back to the Welsh Wound Innovation Centre clinic for my first follow-up appointment with wound wizard Prof Harding – read about my first visit here.

Now I was supposed to be having an MRI which has been requested but not yet completed, so I had queried if it was worth me attending or rearranging, but I was told to still attend.

When I got to the appointment I was told this was  because, although the scan hadn’t been done they wanted to check on any change which was very reassuring. And indeed, the wound was smaller than a month ago – a reduction of 0.8cms, which as it was only 2.5 stubbon cms did mean a reduction of 32% i was also told that my blood tests were normal – so this means that no infection was detected by the blood test. They still want the MRI to check the size and shape of the cavity and ensure there is nothing lurking – so I await that appointment from the BRI.

The Prof himself did make an appearance, and had been shown the last blog entry by his team when I tagged them on Twitter. He was very compliomentry about it, so hopefully he will continue to read it!

So all this means that the SNAP system seems to be doing it’s thing, slowly but surely. I go back to Cardiff in January, unless we get the MRI sooner – will keep you all updated…

To See You NICE…

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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.

 

 

 

 

NICE to see you…

A little while back Crohn’s & Colitis UK promoted an opportunity to apply to join a National Institute of Clinical Excellence (NICE) Committee to review some of the guidance around the treatment of ulcerative colitis.

Following an application and competitive interview process, I’m very happy to be able to share that I was appointed to the committee for 12 months, and the first meeting is tomorrow in Manchester!

We are going to be looking at some guidance around drugs for ulcerative colitis and some other things too – we’ll learn about the scope of the year when we meet.

Although I am part of the committee as an individual, my role is to get the patient voice heard, so I will be using my blog and social media platforms to canvas opinions from time to time.

I’ll be updating on social media as I travel up to the meeting this evening and when I can during the day, and I’ll do something afterwards to let you know how it was.

It’s really important that the views of patients are heard in these processes, and I’m really looking forward to being involved.

Question for the Crohns Colitis UK #IBDHour Takeover

Q1 Please introduce yourself – what’s your name and where do you come from? Share your dx if you like, or your relationship with IBD.

Q2 Where do you find community and support for your journey with #IBD?

Q3 If you could tell everyone one thing about #IBD, what would it be?

Q4 What’s the most useful piece of advice or information you’ve received since #IBD diagnosis?

Q5 Have you ever taken part in a research study?

Q6 We’ve got a lot to do in the years ahead. What do you think our number 1 priority should be?

 

 

You can leave your hat on…

You might remember that in the summer I went to an event organised by Purple Wings Charity who give grants to people with stomas from IBD to help regain confidence.

One of there annual fundraising events is the pin-up calendar, and I am going to be taking part for 2019! the shoot is in January and I need to raise at leats £50 to take part – I’m hoping to raise at least £100.

You can read more about the charity here and donate via JustGiving – so go on, get me in my pants!

I’m hoping that this will be a motivation to take control of my diet and lose a bit of weight too, so help me help myself!

What happened in Wales

 

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University Hospital of Wales

So today I crossed the Severn Bridge and went to my appointment at University Hospital Wales with the Wound Healing Service led by Professor Keith Harding. After 22 months with my unhealed perineal wound where my pouch, rectum and anus were removed, I – and the team supporting the wound – were keen to get the expert opinion of the man who literally writes the books about wound healing.

I arrived in plenty of time – I’d taken the day off work and know that hospital parking can be interesting. The setting is lovely, with a nice open space and some sculptures at the entrance to the children’s hospital.

The concourse at the main entrance is like a small shopping centre with a bank and a post office, as well as coffee, book and sandwich shops. What was nice is that there was a mix of high street names and independent units. I worked out where my clinic was, and then headed for the restaurant which has won awards for it’s healthy eating options – so I had a flat bread, baked crisps and water, and it was really nice!

I also found a portrait of this chap…

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Nye

So after lunch I went down to the clinic and was first in which is always nice. I saw a lovely nurse called Hannah who started taking a history – which always takes a little while these days, and it was mostly just the wound treatments!

A registrar came through and then they examined the wound, measuring it and noting the dimensions. They then called through the Professor!

Depending upon your point of view, I’ve either been fortunate or unfortunate to have been treated by three professors – Nicholls, Clark and now Harding. There is something very calming about being in the presence of someone who not only knows what they are doing, but also turn teaches others either directly or by writing books and journal articles – the very top of the field.

So he came in, asked a few questions about how I came to be there (and then asked me to share that with some visitors to the clinic too) and examined the wound. He asked a few more questions, in passing mentioned that ileo-anal pouches do ‘often fail’ (I guess he doesn’t see the people whose are fine) and then gave his prognosis:

  1. An underlying infection. He requested some bloods be taken, and this may show if there is something there. He asked if a biopsy had been taken (it hasn’t) so this might be a future possibility depending on the blood results.
  2. A ‘dumbbell’ shaped cavity, with the coccyx pushing in and not allowing the upper cavity to drain sufficiently – and MRI scan is being requested back in Bristol so they can compare images. Possible solution – shave off some of the coccyx to allow it to drain…

Obviously it is early days, but he also said something to me before he went off to see another patient:

‘We can’t heal everyone we see – we help about 80% of our patients. I won’t promise to heal you, but I do promise that you won’t be forgotten.’

I go back in 4 weeks, so lets hope I can get the MRI before then!

 

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).

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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.

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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).

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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).

Stag with a Stoma

I recently went on a stag do. For me it involved lots of drinking and some dancing and then some more drinking, a really long sleep and then more drinking…

This was the fourth stag do I’ve been on since my IBD diagnosis and surgeries – two with Stoma’s, two with an internal pouch. It could be a daunting prospect, so here are some things to think about before you get so drunk you end up asleep in a night club.

Do people know?

Depending on whose stag do it is, not everyone might know about your IBD/ stoma. There is bound to be someone you’ve never met. How open you are is a big part of your life, and it could be that just the stag and organiser know, or maybe no one at all. Remember though that when it’s well managed a stoma shouldn’t be a barrier to most activities, but do consider letting people know about it if it is going to restrict you in some way.

Travel

Travelling can be stressful, particularly if public transport or airports come into play. Make sure you have an easily accessible spare appliance and accessories to change, and a RADAR key to give you access to disabled toilets. You’d be surprised that big chain pubs like Wetherspoons and even some nightclubs have RADAR key access toilets which can be a comfort.

Activities

Activities can be a big part of stag dos. I’ve paintballed and go-karted with mine (wearing a shield for the paint balling). Depending on how recent your surgery was you might want to wear some support wear – a belt, vest or underwear. These are available on prescription from companies including Vanilla Blush and Comfizz. Speak to your stoma nurse for more details.

Drinking

One issue I have with my stoma is drinking large volumes leads to liquid output – so pints are not a good option for me all night long. Thankfully gin and tonic seems to cause fewer problems. If you know that large volumes causes issues, then switch to short drinks. You might also benefit from a sachet that traps liquid output and turns it to a gel – like Trio Pearls for example. I took some with me on my recent stag do – although didn’t need them in the end.

I also carried extra loperamide, but you should check with your doctor before using it if you don’t usually do so.

Bag for supplies

I have a little Timberland man bag that I use to carry my spare appliance, RADAR key and a few other bits. I managed to carry this around no problem in Cardiff, although did have to put it int he cloakrom in one club we visited. At this point I stuck my spare bag in my back pocket, just in case.

Food

Sometimes in the rush of the pub crawl, eating gets forgotten or at least delayed. If you are drinking lots then someone else is bound to be hungry, so grab a bag of crisps at the bar or divert to a shop to grab something, particularly if you know you need to eat regularly to maintain your consistency.

Sharing rooms

Hotels are often shared on a stag do. If you end up sharing with someone you don’t know, or haven’t seen for years, then do consider if your output might be any smellier than normal (curry and a pint?). If you don’t already use a deodorant for your bag, get a sample for the weekend – I use Na’Scent, but other solutions, including mint Tic Tacs- are available.

So, there you go – my tips on surving a stag do with a stoma.

#IBDHour September 2017

On our first birthday Jenna Farmer is posing the questions as follow:

Q1 Please introduce yourself (you can share your diagnosis if you wish) and tell us how your summer was!

Q2 There are so many different diets out there, do you follow a strict diet and does it make a difference to your symptoms?

Q3 What are your ‘trigger foods’ that make your IBD worse?

Q4 On the end of the spectrum, what’s your go to food in a flare?

Q5 Do you think there is enough support with discussing diet and IBD-such as access to dieticians?

Q6 What’s your biggest worry about the diet you are on? E.g missing out on a certain food group or nutrient?

Q7 Low residue and low Fodmap diets are becoming popular-but have drawbacks. What are your experiences with them?

The Other Side

Interesting to think about the other side

GP and Human - Dr. Kathryn Hayman

You see ‘a GP;’ a role who is there at your service to sort out your healthcare needs.

WHO is on the other side? Do you know? Can you see?

*****

What do you see? You had to wait to be seen. This annoyed you. What on earth is the GP doing? You grumble as you go in to be seen.

What is the other side? Patients keep arriving every 10 minutes over and over all day long. Your GP is trying to keep to time but people keep coming in with lists, complex issues and mental health problems which can’t be done in the allocated time. The GP knows you don’t like having to wait. She feels guilty about this and stressed by it. She apologises even though it’s not her fault. The GP is adding ‘catch-up’ slots in to try and prevent patients having to sit in the…

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