The IBD & Ostomy Support Show – a brief review 

So tonight was the first episode of The IBD & Ostomy Support Show which is a new, weekly online show broadcast via YouTube. It has been put together by Louise who blogs at Crohn’s Fighting, Rachel from Rocking2Stomas, Natalie who is The Spoonie Mummy and Stephie who blogs at Colitis to Ostomy – you can also find them on Twitter and Facebook too.

It’s an hour long show with the four ladies taking it in turns to speak ona variety of topics tonight they spoke about ostomy routine (which led into a discussion about suppliers) epidural and why they started blogging among other things.

Overall it had a relaxed feel, kind of like eavesdropping on a conversation. There were a few technical issues – we had no video of one of them for a while, and all the volumes were different. I also had to refresh the page a few times, but they have been my internet connection. They were able to take questions via the text chat which was useful and made it interactive.

At times it got a bit technical, particularly the conversation about surgical pain relief and rectal sheathes, so in the future it would be good to have someone checking out any jargon and explaining it.

I think it is certainly an interesting development, and will watch to see how it goes – good luck girls!

 

The NHS – Please use responsibly

Unless you’ve been hiding away from the news because of Trump & Brexit fatigue, you can’t have helped but notice that the NHS is having a bit of a crisis in hospitals. And of course over the last few years there have been issues with the numbers of doctors prepared to be GPs (and subsequent availability of appointments) , junior doctor contracts and nurse shortages. Much of this is linked to politics, and I won’t be exploring that in this post – but I’m happy to have a discussion about it with anyone who wants one!

Ulcerative colitis is a chronic condition – there is no cure. As such, I am likely to be a higher than average user of NHS services for all of my life. In the last few years I have been a very heavy user of the NHS – both GP and other primary care services (practice nurses, dressing clinic) and hospitals. I think that all of us have a responsibility to use the NHS responsibly, and those of us who use it more need to do so especially. This was the topic of discussion in January’s #IBDHour which you can read here – and what follows are my thoughts on how we can use, and preserve, the NHS for ourselves and everyone else.

Two Golden Rules

  1. Use the least specialist bit of the NHS that you can for the issue you have

If you need to call 999, then you need to call 999. However, if you can have a phone consultation with your GP, then do that. I’ll go into the different NHS services shortly…

2. If you have an appointment –  use it!

In 2012/13 it was estimated that more than 12 million GP appointments were missed, costing the NHS in excess of £162 million. Around 6.9 million hospital outpatient appointments were missed, with an average cost of £108 per appointment. That is a lot of money, and a lot of missed appointments!

GPs

IBD patients seem to have very variable experiences of GPs. If you already have a diagnosis and a treatment plan however, they may be the first port of call – particularly if you get new symptoms or you are not sure what is happening. And GPs are great! They can treat infections, refer on to appropriate specialists, including mental health support and in a flare situation start treatment. However, several GPs have told me that I probably know more about my disease than they do, so don’t be afraid to speak up about what you think is happening.

GPs other key role is as the gateway to other parts of the NHS. When I had abscesses, I couldn’t just rock up to the surgical assessment unit. I could try and call my consultant, but the most reliable and efficient pathway was to see my GP who would assess if oral antibiotics were required or if it had gone beyond that – or often start me on the antibiotics and review me a few days later.

Out of Hours Services

I’ve had great support from my local out of hours service over the years, but it seems that these are patchy. You could see a nurse or GP somewhere near you, and it’s a great alternative to waiting for hours in A&E.

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Formerly known as NHS Direct they get a lot of stick, but if you accept that they don’t have specialist knowledge, but do have 24 hour access to medicla professionals and can alert whereever they refer you on to if needed – or send an ambulance – then you should get on fine.

Pharmacists

I think that pharmacists are much under used. In #IBDHour we had some great examples of how pharmacists have made life better for people, from warning about the dangers of NSAIDs in IBD to ensuring people had drugs in a form they could use!

Another great thing is that you don’t need an appointment to see a pharmacist, and if they don’t know the answer or can’t help then you haven’t lost much! So if you have possible side effects from a treatment, or low grade symptoms go and see them. It’s also important to make sure you engage with them – let them know what your diagnosis is so they can keep an eye out for inappropriate prescriptions (they’ll note it down, they don’t remember everyone…). Dispensing assistants can be great too – one told me about the NHS pre-payment certificate which saved me loads of money when I had my internal pouch and wasn’t entitled to free prescriptions.

Consultants

If you have IBD then you will need access to a consultant sometimes. Gastroenteroligists will put a treatment plan in place and any monitoring such as regular blood tests. However, you might not see them very often and get your prescriptions repated by your GP. It can be frustrating if your GP doesn’t know the answers to your queries to not have a direct line to your consultant. Some do give out numbers, or you can call secretaries and leave a message, or ask your GP to write a letter.

Surgeons come into play here too sometimes, and you’ll be introduced to them either as an in-patient or when your GI thinks it is time to see them. They may also put other things in place and take over your care (I’ve been under the care of surgeons for most of my time as an IBD patient).

Specialist Nurses

Specialist IBD Nurses, stoma and internal pouch specialist nurses are often our first port of call when things are not as we would like. However it is estimated by Crohn’s and Colitis UK that 1 in 3 patients don’t have access to an IBD Nurse.

If you have access there is often a phone line where you can leave a message and get a call back, although how long this takes seems to vary. IBD Nurses are often involved in the monitoring and arrangement of biologic treatments, and will also have clinics to offer support.

Crohn’s & Colitis UK have a campaign to raise awareness of the gaps in this service.

You’ll need to find out what is acceptable locally, but they are not the people to call for appointment queries!

If you have a stoma, as well as your local stoma care nurses, your ostomy supply delivery company may have nurses you can speak to over the phone, and some of them support the nurses in some areas.

So we have a whole range of treatment options available to us for when we have questions, and when things are not goign so well – but that doesn’t mean we have to go straight to A&E.

What’s this #IBDHour all about then?

So if you’ve been over on my Twitter recently then you might have spotted that I am launching #IBDHour – the first UK based Twitter Hour for Inflammatory Bowel Disease!

I am a massive fan of Twitter, and think it will be a great way to build the UK IBD community – as well as open it up to contributions from all over the world (where the time difference isn’t too much anyway.

If you’re not familiar with the concept of Twitter hours, then they go something like this. At a pre-arranged time, someone (the host) will start the hour off with some questions for discussion, and all the people participating use the hashtag – in this case #IBDHour – and answer the questions and then respond to other people.

The first event is going to be on 15th September at 8pm UK time, and the theme is going to be ‘Support’.

I’m really excited about it, and hope it will allow people from all over to have a virtual conversation.

If your interested in taking part, then follow @IBDHour on Twitter!

Not everyday is a bad day… #IBDAwarenessWeek

I’ve had some lovely feedback from my last post about a bad day, so thanks to all those who fed back. Lots of IBD bloggers are posting this week, so do check out the hashtag #IBDAwarenessWeek to find more.

I’ve been reading a few, and wanted to just add a little perspective to my previous post. My really bad days don’t happen often, maybe once every couple of months. Of course, I do have issues like the incontinence and associated pain most of the time, but I am still able to work full time, socialise and enjoy alcohol and eat pretty much whatever I want.

I can’t exercise – the pain, urgency and leakage increase, so I’m looking forward, post surgery in January to being able to exercise. I’m not over weight, but reckon my fitness level is about nil. This will also include running around with my little boy, who will be 6 months when I have my surgery.

Mentally, low level pain is very waring. Physically too. And that means sometimes you are not available for your friends or partner. I was commenting on a thread on #getyourbellyout Facebook group earlier this week. The thread was by a young woman seeking advice because her friends had stopped inviting her out because she had said no for so long. They didn’t understand her condition and the impact it had on her. I’m not sure all of my friends fully understand how my IBD affects me – it is one reason I now blog about it – but I am fortunate that they have always been supportive.

So I guess I see myself as somewhere in the middle. I’m not required to have regular hospital treatment, can work and live a pretty normal life. Things could be better, and what needs to happen is happening. Not such a bad day after all.

 

This blog post is part of a series I’m writing in the run up to my stoma surgery in January 2015. If you’ve found it interesting, please do share it, and if you can, supported CCUK & the ia by donating at my Virgin Money Giving page http://uk.virginmoneygiving.com/RichardHarris19

#IBDAwarenessWeek – What a bad day is like for me

I was going to save this post until just before my surgery in January, but as it is Inflammatory Bowel Disease Awareness Week from 1st – 7th December I thought I would bring it forward. This might be a US based thing – but as we had to endure Black Friday over here I am appropriating it.

So, to put this in context for you, you need to know that I had a diagnosis of Ulcerative Colitis, which is an inflammatory bowel disease that affects the large bowel (colon) and rectum – Crohn’s Disease can affect the whole digestive tract from the mouth to the anus. Last year my diagnosis was changed to Crohn’s Disease, but there is now some debate among my doctors as to which I have.

I have had surgery to remove my colon and most of my rectum, and have an ileo-anal pouch (sometimes called a J-pouch or internal pouch) made from my small intestine which means that my plumbing is all internal i.e. I do not have a stoma and an appliance of my abdomen to collect my waste (poo).

When the pouch is formed, a rectal cuff is left in place to attach it to. Unfortunately, my cuff became inflamed (proctitis) and I needed further surgery – a pouch advancement – to remove as much of this as possible – when it was inflamed I was unable to work, walking was painful and I was tired all the time. At one point the inflammation also spread to some of my joints – knees and fingers.

Around 4 years ago I was prescribed a drug called Humeria (also called Adalimuab) which is one of the newer treatments. It is an auto-immune suppressant, suppressing the bodies attack on itself which is essentially what the IBD does. For a while I was great, but then unfortunately developed a series of abscesses around my bottom, linked to the join from my surgery and a fistula (a tunnel through by bodies tissues). These have required several surgeries to drain and treat.

So where does that leave me? I have a fistula which may never heal. There is a collection of infection behind my pouch which is not draining away totally, and requires surgery to remove. The repeated surgeries have left me with faecal incontinence, and I have to wear pads every day. Despite barrier creams, the skin around my bottom is broken and sore. Sometimes it is still painful to walk long distances. So those are the symptoms I have, but what does it mean?

On a bad day I will not be able to go to work. This will usually be a combination of particularly loose bowel movements and stool (I take the maximum allowed Loperamide (Immodium) everyday which has resulted in particularly sore skin meaning I cannot walk without pain from the work car park to the office, and it can be painful to drive (the moving of legs to change gear for example). I will be bleeding too with each bowel movement, and the blood loss makes me feel weak and tired, and as well as the external pain there will be internal pain too as what little of my rectum is left ‘flares’ and becomes inflamed. If I do walk, I limp. I will take pain killers – I reserve prescription strength co-codamol for these bad days. The flares don’t seem to be triggered by anything specific, although getting tired and run down often leaves me sore – right now with a 5 month year old that is happening more than I would like.

I leak every day – a mixture of stool, blood and pus. I wear pads day and night. These are quite bulky, so when I go out and about I have to take a bag, along with my RADAR key for disabled toilets and nappy bags for when there is not one available. On bad days I will need to change more frequently, and the rubbing of toilet paper makes the soreness worse.

For me, most bad days are just that – a day. I rest, I am extra diligent with creams and eat very plain, non-exciting foods. In that respect I am more fortunate than some, but less so than other IBD sufferers. Everyone’s disease is different, and I’m sure other sufferers will be sharing their stories this week. Many others of course will not – not comfortable to share what is a pretty intimate part of their lives. You can find more details of how Crohn’s Disease and Ulcerative Colitis affect people at Crohn’s & Colitis UK.

This blog post is part of a series I’m writing in the run up to my stoma surgery in January 2015. If you’ve found it interesting, please do share it, and if you can, supported CCUK & the ia by donating at my Virgin Money Giving page http://uk.virginmoneygiving.com/RichardHarris19

How wrong can you be?

So I went on my merry way with my suppositories (mesalazine) doing OK. The diagnosis was in May 2005. In August, I was supporting The UProject a residential for young people at an outdoor education centre. Sleep was scarce, and my guts were unsettled. I was popping Buscopan for IBS for the cramps and was going to the bathroom more than I wanted to. That Friday I want to see the GP who prescribed some Prednisilone foam enemas, and said it was the Ulcerative Colitis, go back if things got worse.

That Saturday I went one trip to York with a group of young people. I remember at lunch time finding a toilet in Burger King and spending quite a long time there. I don’t remember anything about Sunday.

On Monday I was taken to GP by my mum. I didn’t say much. The GP looks at me and sent me to hospital. And I do mean just looked. No real tests or exam. I was I recall quite pale and clammy. I was admitted to Peterborough District Hospital, and that was the end of my summer. I was to be in hospital for 7 weeks.

I was told I was having a severe flare of my ulcerative colitis – at least that was what most of the doctors thought. One doctor was keen to ensure that possible gastroenteritis was explored because of the residential project the week before, but this was soon ruled out. The dosage of steroid I was on was increased, lots of blood taken to check inflammatory markers among other things. One of the things that was done regularly was to measure around by belly to see how swollen it was – and it was pretty swollen.

When the steroids didn’t work I was given cyclosporin – a drug used after transplant to stop the body rejecting the new organ.Whilst this was helping, progress was not fast enough, and so after about 3 weeks the surgeon came a calling and told me that my colon needed to be removed, and a stoma formed (a sub-total colectomy). At this point I was going to the toilet to open my bowels 10 – 13 times a day. I don’t know if you are familiar with the Bristol Stool scale but I was a 7. And a blood stained 7 at that. I was losing weight, was weak and really very very ill. I don’t really remember, because I was pretty out of it. I remember it being a Sunday that the surgeon cam along and told me this was going to happen. The stoma nurse came around an drew a cross on my abdomen where my ileostomy (small bowel) would be coming to the surface.

So I said goodbye to mum and dad as I off to theatre, asked the surgeon to  give me a shark bite finish, and some time later woke up in the surgical recovery unit (which incidentally gave me the best care of any hospital ward I have been on so far) with an oxygen mask and three tubes – a catheter, wound drain and naso-gastric tube (tube to the stomach that goes down the nose), a 12 inch/ 30 centimetre incision down my middle that was now stapled up, plus a couple of drips and an epidural for pain relief. Oh, and a big clear plastic bag over my new stoma to catch my bodily waste.

Although I was quite out of it with the pain relief and coming out of the anaesthetic there was one bizarre feeling – I felt better. And the reason for that? 150cms/ 60 inches of diseased colon had been removed from my body. I was told afterwards that when they opened me up, it was evident that soon my colon would have exploded (not the medical term) and that would likely have killed me – stool in the blood is not a good thing after all. So for me, as is the case for many IBD sufferers who need emergency surgery – my stoma saved my life.

 

This blog post is part of a series I’m writing in the run up to my stoma surgery in January 2015. If you’ve found it interesting, please do share it, and if you can, supported CCUK & the ia by donating at my Virgin Money Giving page http://uk.virginmoneygiving.com/RichardHarris19

A world unseen…

In my recent-ish post ‘Musings on Free Time‘ I considered getting more involved in Inflammatory Bowel Disease (IBD) and mentioned the #getyourbellyout campaign – you can check out that hashtag on Twitter, Instagram and there is also a Facebook group. I even joined in!

In the middle of June there was then a flurry of publicity around IBD and Crohn’s Disease. Firstly, Crohn’s Colitis UK launched there new Fatigue Screening tool, in reporting this there was some misrepresentation in the media – I talked about it all here. Then the story of Bethany Townsend went viral and received lots of media coverage – The Daily Mail & The Daily Mirror to name just two.

This has produced some interesting reaction around the IBD and ileostomy/ internal pouch community. First, a bit of explanation…

Crohn’s Colitis UK is a charity supporting people with Crohn’s disease & ulcerative colitis (I have Crohn’s).

The ia – The Ileostomy & Internal Pouch support group is a charity that supports people (and their families) with an ileostomy – that is when the small bowel is brought to the surface of the skin as a stoma and has a bag placed over it to collect waste, often after the removal of the colon, and internal pouches – where a reservoir is created from small bowel following the removal of the colon (large bowel).

The #getyourbellyout campaign raises money for Crohn’s Colitis UK, and along with Bethany’s story and subsequent publicity there was some negativity that the ia had not tried to get involved and gain some publicity/ raise awareness of themselves as all of this had been going on – as well as being critical of perceived error in reporting – referring to a colostomy rather than an ileostomy.

According to accounts on the forum, the ia is happy where it is and has in the past been resistant to raising it’s profile further. Crohn’s Colitis UK, who have used Bethany’s story, have celebrity ambassadors – Sam Faiers from the Only Way is Essex and Carrie Grant for example. However, one tweeter has been keen to point out that Crohn’s Colitis UK have over £1m in the bank, and last year spent more on staffing and on costs than on research.

Now I have not been really involved with either charity – although I am a member of both – and I’m not overly concerned by either aspect – although interested to see the dialogue develop between this tweeter and the CEO of Crohn’s Colitis UK. And I think that the ia is a very specialist charity – relatively few people are affected or interested. What is important, in my view, is that people who are affected are informed about the existence of these charities either at the point of diagnosis or surgery (or when surgery is being considered). That obviously requires a level of resource to produce information, as well as volunteers to support local group infrastructure to support members and potential members. It’s never going to have the reach of the larger health charities, but both do good work – and raising awareness of both IBD and ileostomies and internal pouches is important – to me at least.

My local CCUK group has just restarted, and I look forward to attending meetings with both.