Why is #IBDHour about set backs?

The theme of this month’s #IBDHour chat tomorrow is set backs. It’s sometimes tricky to come up with a theme, but this month it came quite easily.

At the end of March, Crohn’s patient Dynamo released a video on Twitter revealing side effects he has had following treatment for a flare. The artritis he is suffering has meant he can’t shuffle cards – which is tricky for a magician!

On a smaller scale, over the Easter weekend I had to take a trip to BrisDoc when a small abscess burst out of my old fistula tract. It wasn’t too painful, but it needed antibiotics, which caused bag leaks. And I had to start wearing pads again to catch the leaky stuff. And for a few days I was worried that this could be the begininng of more issues, maybe more surgery if the abscess needed draining – it knocked me.

So tomorrow night we’ll be talking about set backs – what do they look like, what can you do, and how do you recover – I hope you can join us!

* Note – due to illness this IBDHour was rescheduled for May

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?

Meet Jack – blogger @ LifeAndIBD

Jack is a new blogger on the IBD scene over at LifeAndIBD. Via a Facebook group he was looking for some collaborators, so we decided to interview each other! He is much more organised than me, so you can see his interview with me here, and find his answers below.

Q1) Tell me about yourself. What’s your name, where do you come from and what do you do for a living?

I’m Jack, I live in Bournemouth and I am a claims assessor for a private medical insurance company.

Q2) What were you diagnosed with and when?

I was diagnosed with Crohn’s disease in January 2016.

Q3) How long had you been suffering before you got your diagnosis?

I had symptoms for around 10 years prior to getting my IBD diagnosis. It was hell!  I had real bad abdo pain. Diagnosed with appendicitis and had it removed. The pain carried on after the procedure and i kept returning to my GP telling them this. They said i had phantom pains, it was ibs, change my diet, and then they told me i was imagining it for attention. I changed my GP who then sent me for a colonoscopy in 2016 and they then saw I had severe Crohn’s.

Q4) How did you feel when you were diagnosed? Had you heard of Crohn’s/UC before?

In all honesty, I was completely devestated! I was in pure shock for about 3 days. Going home from seeing my consultant is a blur. If it wasnt for my husband being with me, I dont know where I would have ended up. I had heard of it previously, someone i knew of had been newly diagnosed but didnt really open up about it. It was only then when she was diagnosed, I realised we had had similar symptoms and decided I would push to get myself seen to.

Q5) What treatments have you been on, and are you on any at the moment?

I started off on Azathioprine. I was on that for around a month and then I went down with pancreatitis. They promptly stopped that and put me on 6 weekly infusions of Infliximab which I am still on now. My last infusion I didn’t react too well to and I went back into hospital with pancreatitis again. Not sure what they are planning on doing next with my treatment.

Q6) Is there anything you want to do but can’t due to your condition?

I can’t go anywhere without knowing if there are toilets readily available. I cant go running, my joints hurt too much and the fatigue is so extreme, some days I can barely get dressed.

Q7) How would you feel if you needed to have a stoma in the future?

Right now, I honestly wouldnt mind. I don’t feel my treatment has worked for the 14 months I have been on it and my symptoms seem to be worse. If having a stoma means putting me into remission, then I am all for it!

 

Q8) Do you believe we will have a cure?

Unfortunately no I don’t. I can’t tell you why I think that, and it would never stop me raising awareness and money for Crohn’s & Colitis UK. The only thing I can see happening is more effective treatment, but this may just be me being cynical.

Q9) What is one piece of advice you’d give to someone who is newly diagnosed?

Never let it beat you.

 

Q10) Do you get involved in any support groups?

I dont. I dont even know if there are any in Bournemouth. Its something i would like to do in the future though!

Q11) What is one thing you would like the world to know about IBD?

It’s invisible. I may look OK, but chances are I’m not. Don’t be ignorant.

 

Do check out Jack’s blog, and comment below if you like the interview and if you’d like to see any more collaborations (or collaborate on a post!)

 

#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

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

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.