Category Archives: ibd

#IBDHour January 2018

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Our chat this month is all about biologic treatment – here are the questions written Young Crohns our guest host this month.

Q1 Let’s start with some introductions! Please say hi – name, age, where you are and share your diagnosis if you wish. How has your day been? #IBDHour

Q2 What is your current treatment plan for your IBD? Does it involve medication? #IBDHour

Q3 Have you heard of biologics used for treating IBD? Have you ever tried any of them? #IBDHour

Q4 Have you had success with biologics? If not, what was the reasoning? #IBDHour

Q5 How do you feel about the risks these drugs bring with them? Do you think these medications are worthy of the risks? #IBDHour

Q6 If you’ve had side effects of these medications, have you received help with them from your IBD team? #IBDHour

Q7 Have you received more than one biologic? If so, how did that manifest itself and how did you feel? #IBDHour

Q8 Have you received other medications alongside a biologic? If so, what was it? How effective was it? #IBDHour

Q9 Finally; how do you find your treatment on biologics? Overall positive or some aspects of negative? If so, what is negative about it? #IBDHour

#IBDHour December 2017 – Review of the Year

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The final #IBDHour of 2017 will be a review of  and we’ll be starting over on Twitter at 8pm on Thursday 21st December. Follow @IBDHour – here are the topics for discussion.

Q1 Let’s start with some introductions! Please say hi – name and where you are (even if your just following along) and share your diagnosis if you wish. And overall has 2017 been a good #IBD year for you? #IBDHour

Q2 What has been your personal highlight this year? #IBDHour

Q3 What has been your biggest IBD related challenge this year? #IBDhour

Q4 What has been the best IBD related campaign in 2017? #IBDHour

Q5 Most exciting treatment or research development for IBD? #IBDHour

Q6 Best blog post or social media campaign in 2017? #IBDHour

Q7 Most inspiring IBD-er of 2017? #IBDHour

Q8 Your hope for IBD in 2018? #IBDHour

 

 

What happened in Wales Part 2

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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…

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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.

You can leave your hat on…

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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…

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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).

The Next Step, Wound-wise…

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Monday wasn’t the best day I’ve ever had. Having driven into work after dropping off the boy at nursery and him not wanting to go in, I discovered that my meeting had to be cancelled. It was no-ones fault, but it really threw me out as I suddenly gained time that I didn’t have everything with me I needed to fill productively.

I was also annoyed because I’d driven for an hour to get to work, and would have to leave early for my dressing appointment – so lost time in my day that I could have spent working from home. I took out my anger on an early lunch at KFC.

Let’s give this a bit more context. I’m currently having my now 19 month unhealed chronic wound where my rectum and anus were removed treated with a PICO dressing – a vacuum dressing with a small portable battery-powered pump that I’d previously last year – I blogged about it here. Because of that, I’d had to cancel my involvement in the bubble football activity on a stag do I’ve just been on. As it turned out, the dressing had become overwhelmed anyway, having been changed on the Wednesday (there are only two dressings in a pack so it can only be changed once a week, whilst the pump lasts 7 days). So it’s still wetter than we thought it would be. This is still having multiple dressing changes each week, and at this point is starting to get me down. The disruption is the thing, plus the fact it has been going on for quite so long – well chronicled on this blog!

What that looks like for me is a struggle with motivation – so less blogging for example, no poetry writing. I eat badly – not main meals but snacks. I drink more (not excessively, but more than I probably should) and fritter money away, or buy things I don’t really need.

My focus is reduced at work too, so I feel less satisfied with my job, and probably could be doing more. The ongoing saga has meant I have not been able to exercise as much as I would like, and coupled with the extra eating that has led to weight gain – some was fine, but I am now the heaviest I have ever been at over 14 stone, and so am now clinically overweight, and that starts to have an impact too – because I have always been pretty skinny. But can’t exercise to lose some – pass the ice cream!

I had decided today after that heavy stag weekend that I would speak to my GP and try and get some kind of deadline for progress with the wound. I haven’t managed to get an appointment yet, however the Community Tissue Viability Nurse is pulling out the big guns and I’ll be getting a larger vac pump next week – so that at least should move things forward.

I’m still going to talk to the GP though. I recognise in myself that things are not right, and whilst I don’t believe I am depressed, it feels like I am in a period of low mood, which I have had a couple of times before. We are just coming out of a reorganisation at work, and I think I attributed much of my feeling to that, but now it is over the feelings are still there…

So, there you go. A wound update, a mental health disclosure and an insight into how I deal with anger. I should note that I was not the only person in KFC at 11.30am…

I shall try and update more often, in the meantime, why not treat yourself to a badge via my FB page store?

A very lovely afternoon (apart from the roadworks)

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On Saturday I journeyed to Birmingham for the Purple Wings Charity Conference. There was also a fundraising ball in the evening that I wasn’t attending, but I’ll come back to that later… If you have to go to Birmingham centre in the next little while I highly advise getting the train…

Purple Wings raises funds to award grants to IBD suffers and ostomates, to help them to regain their confidence, or fund some time with family after surgery. The conference was an opportunity to hear about the work of the last 12 months, launch the 2018 calendar, and hear from some individuals about their IBD and ostomy journeys.

There were also stalls from various stoma equipment manufacturers and distributors, bag cover creators and clothing companies, as well as the local Crohn’s & Colitis UK group and ia support branch.

The charity’s strap line  is ‘Recover, Adapt, Overcome’ and the founder, Lauren, is so driven to raise funds and help people to do just that. She was very humble throughout, giving the various speakers the lime light and a chance to share their experiences.

I didn’t take photos or video, and won’t try to capture the speakers words for you. Needless to say they were emotional and powerful, and I was sorry to miss the input from the evening speakers.

It was a bit like walking into Facebook come to life for a while, meeting and seeing people I have connected with or seen in various online groups, including former #IBDHour guest host Shell Lawes, the IBD & Ostomy Support Show girls (well three of them) James from The Toilet, Me & IBD and many others. It was nice to meet people in person rather than just online, and to be bale to have casual conversations about ostomy bag accessories!

You can find out more about the charity in this little video…

A couple of people asked me why I wasn’t staying for the evening ball, and I thought about it on the way home. It was partly about childcare, but mostly because when it was time to buy tickets and book rooms we just didn’t know what would be happening with my wound (18 months and counting). As it happens, it would have been possible wound wise, but it has prevented me doing so much – not because I am in pain, or in bed but because I might need professional intervention to do the dressing change. When things like that drag on and on (and on) you don’t realise how much it is holding you back – so that is the focus, get that wound healed (seeing consultant on Friday) – and then do the good stuff.

And maybe then next year I can share my story, and some poems at the Purple Wings Charity Ball…