IBD Awareness Week 2019

So I’ve been quiet recently here, and this week in particular. I’ve had flu, and felt really rubbish. I managed to make it back to work on Thursday, and was then off on Friday doing childcare.

Now I don’t know for sure I had flu, but the symptoms were flu like – runny nose, headache, shivers, sweats and then fatigue. In fact it was the post-viral fatigue that was almost worse than the flu bit really. And I had received my flu jab, so either this was a strain that wasn’t covered, or made less because of the jab – or was some other virus.

I think it is worth remembering that people with chronic illness can still get regular ill. This might be compounded by any treatment which affects the immune system, and they may take longer to recover. Because of that it is worth exploring with your HR department if you can record any disability related sick leave separately.

There have been some great posts on blogs and social media for Crohn’s & Colitis Awareness Week this year, and in the US LAX Airport turned there illuminated columns purple! Tweet from LAX

So a real quick overview and a brief summary of my journey…

Crohn’s Disease and Ulcerative Colitis are the two main forms of Inflammatory Bowel Disease (IBD). Both are chronic conditions with no known cause or cure, but the symptoms can be treated with a range of medications. Sometimes people require surgery to remove parts of the bowel, and may have a stoma formed with an ileostomy or colostomy depending on where within the bowel it is made.

I was diagnosed with Ulcerative Colitis in May 2005. 3 months later I was on hospital receiving IV drugs to try and prevent my colon from rupturing. They weren’t working, so my colon was removed as an emergency operation. I contracted MRSA and septaciemia whilst in hospital, and had a further operation too. I left hospital with an ileostomy.

A year later I had an internal pouch created, but it was problematic and I had to have further surgery before it could be activated. All was good for a while, but there was inflammation still in the rectal cuff and I had to have more drug treatment.

In 2014 I was told the pouch had failed due to a collection which led to frequent abscesses. I had a bowel diversion in 2015 to see if resting it would help – it wasn’t enough to it was excised and my rectum and anus removed in 2016. It took nearly 2 years to heal the wound at the bottom end.

Now, apart from a little bit of wound discharge occasionally, all is well. My stomach behaves well and I can do all the things I want to do when my two children allow me the time.

I’m not cured. I still get issues in other parts of my body, but they are managed.

#NoColonStillRollin

World IBD Day 2019

On 19th May it is World Inflammatory Bowel Disease Day. If you check out the hashtag #WorldIBD or #WorldIBDDay you’ll find all kind of things on social media, from personal stories to facts and figures, opportiunities to donate to related causes to fund research or support.

On Saturday 18th May, I took part in the Crohn’s & Colitis UK Walk IT event in Bristol, walking 5 kilometres with my father, wife and two sons age 4 & 10 months (to be fair, Eli was pushed around).

The hArris family at the end of the Walk IT event with medals
At the end of Bristol Walk IT

We’ve done this before two years ago, and this year I was slow off the mark to do any fundraising – although you can donate to CCUK via my JustGiving page. I was diagnosed with Ulcerative Colitis in 2005, and had emergency surgery 3 months later to remove my colon. I had no idea when I was diagnosed how serious the condition was. I then tried an internal pouch, which eventually failed and was defunctioned in 2015, then removed in 2016, along with my rectum and anus. That wound took two years to heal, and along the way I have also had episodes of arthritis and low mood, some nasty side effects from drug treatment, leakage, pain, bleeding, infections and MRSA (twice).

I have tried to be strong along the way. Sometimes it was easy because I was so drugged up I just didn’t care. Sometimes I thought I was being string but was really just being self-centred. I remember one afternoon when I was in hospital, for another complication after our first son was born just weeping – I think because timings hadn’t worked out and I wasn’t going to get to see him that day. It’s a horrible condition, with no cure, but because of the changing nature of it (both Ulcerative Colits and Crohn’s Disease flare up and can go into remisison) it is unpredictable. Everyone’s journey is different.

So if you are interested, have a look at some stories. If you can, please donate some money to a related cause.

I’ll leave you with this Instagram post my wife created after we finished our walk.

Happy World IBD day!

August and Everything After

Well hello blog readers! It’s been a while since my last post so apologies for that, but as you may have seen from my social media in July we welcomed a new little boy into our lives, making us a family of four.

Getting prepped for a new baby is pretty time-consuming, and actually having one even more so – hence the lack of blog posts. We seem to be a in a bit more of a routine 5 weeks in, and the visiting family have slowed down, so here I am!

So what have you missed out on?

Bottom

In June I had a follow-up appointment with my colorectal surgeon at Bristol Royal Infirmary reviewing the progress of my wound. I last posted about it in February, and was indeed discharged from tissue viability. The wound has healed, although a small tract linked to the network of former fistulas and a small collection remains, and discharges sometimes – seems to be worse in the heat so the hot weeks of summer were a reminder it was still there. I haven’t gone back to Cardiff, and will see Bristol again at some point – but all the signs are it is healing – so hurrah!

Birthday

It was my birthday in July. I am now 37. Both children were also born in July. It will be a busy month.

Purple Wings

Last weekend, I attended the Purple Wings Charity Conference and Ball. I went to the conference of this small charity last year (I wrote about it here) and the road works still seem to be happening. In January I did the 2019 calender shoot, and the calender was launched at the conference. You can order one (soon) from the Purple Wings Charity website.

Topless photo of Richard, showing his ileostomy bag

Mr July – Purple Wings 2019 Photo Credit Lisa Jones for Purple Wings Charity

I also performed some poetry and shared some of my story and got some great feedback – including ‘You should have a YouTube channel for your poetry’ and ‘I didn’t relaise you were funny’, and the lovely ‘I’m glad my mum had already left’.

What Happened in Wales Part 3 and some grumbles

Hi everyone. I’ve been a bit quiet on the blog so far in 2018. I think it has something to do with being very busy at work, stepping up at home as my wife’s pregnancy means she is knackered and also the low mood persisting. It has got better from October when it was really quite bad, but I am now 5 weeks of 6 through my group and don’t really feel like much has changed.

Anyway, I owe you an update since my last trip to Wales when I was waiting for an MRI scan in Bristol. It got to December and I hadn’t heard anything so I checked with my consultant’s secretary who said it had been requested. However, radiology use a different system so she couldn’t see where I was in the queue. So I phoned radiology who said they hadn’t had the request. Cue call back the secretary, then on leave for Christmas, so an email to the consultant asking him to re-request, which he did on his return to work and an appointment quickly arrived – the day before my Cardiff appointment! So a phone call to them, explain the situation and rearranged for today – should be plenty of time for the report to be done and shared. I checked at the beginning of this week and Cardiff hadn’t got it, so cue more phone calls, the exchanging of fax numbers and the report was there for my appointment today.

Now, I want to be very clear that I do not blame anyone for this, but I do think it is representative of a creaking system. Our NHS is being deprived of resource, and it is only by advocating for myself that I was able to avoid a January trip to Cardiff that would have really been a waste – for me and them, and then another today. All the staff I spoke to were extremely helpful and understanding – but there are either not enough of them, too many patients or poor systems. Maybe it is a combination of all three, but in a system that seems to increasingly need patients to advocate for themselves, I worry about those who cannot – for whatever reason. Perhaps that is a theme I’ll develop in a future post…

Just after Christmas we stopped using the SNAP dressing because the wound was too shallow to get the foam in – all of a sudden we had improvement! This has continued, and a slight fungal infection aside, the external picture is looking really good.

The MRI scan shows that internally the fistula tracts and void where pouch, rectum and anus were removed are also reducing in size, so it all seems positive, and I’ve got an appointment to go back to Cardiff in 6 months if needed. And yet somehow I don’t feel… happy? Joyful? That it is all over?

I see the tissue viability nurse on Friday, so perhaps if I can be discharged from that service I’ll feel better. Maybe I’ve been institutionalised by it all going on so long?

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…

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.

What happened in Wales

 

IMG_2002

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…

IMG_2009

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!