Category Archives: #IBDAwarenessDay

Donald, no not THAT one

Do you have a “quotation that inspires you”? The one I would choose is probably not an obvious one for a health blog. You might have been expecting me to have trawled through the “inspirational” websites to find some relevant, life affirming words. I hope you’re not disappointed….

Here goes. Over to that well known US philosopher, Donald Rumsfeld. It’s the quote he was ridiculed for at the time, unfairly in my opinion, as it makes perfect sense. In case you don’t remember what he said :

“…as we know, there are known knowns; there are things we know we know. We also know there are known unknowns; that is to say we know there are some things we do not know. But there are also unknown unknowns- the ones we don’t know we don’t know.”

Bear with me, it will become clear. To illustrate the point I’m using one of my favourite subjects – bile acid malabsorption (BAM). Maybe “favourite” isn’t the right description, make that “a subject I have felt the need to write about several times before”. There’s barely a day goes by when I don’t see a comment, on one of the IBD or BAM forums, from someone who has just been diagnosed with BAM and many times the post goes on to say that their doctor had never heard of the condition before. That’s the first hurdle to overcome.

Walk up to St.Thomas' from Waterloo
St.Thomas’ Hospital, Westminster

I am a fellow sufferer as a result of losing my terminal ileum. (I had an ileostomy back in October 2010). Before the operation I was offered the chance to take part in an Enhanced Recovery Scheme at one of the top London hospitals. Part of the ethos behind this regime is to fully inform the patient of what will happen at all stages of the process – pre-op, during the hospital stay and beyond. Was I told about BAM before the operation? I’d have to answer “maybe” and this brings us to the point of this post. Let me explain….

I was told that after the operation absorption of vitamins and salts would be much reduced due to lack of a terminal ileum. The surgeon repeated this message on his ward round post-op. If someone told you that your body wouldn’t absorb salts properly what would you take that to mean? I took it at face value, I would need to up my intake of salt (sodium chloride) to compensate and take supplemental vitamins. I didn’t see the need to question the statement as it seemed very clear.

It wasn’t until I was diagnosed with BAM (4 years after the ileostomy) that I found it has an alternative name “Bile SALT Malabsorption”. Suddenly the comment about not absorbing “salt” took on another meaning. You can see the problem.

This is where Donald Rumsfeld comes in. I heard what the Enhanced Recovery Nurse and the surgeon told me. I understood what the words meant – to me. I didn’t appreciate that I didn’t understand what the words meant to them. From their point of view – they were using their everyday, medical terms to describe a likely problem to a patient.

From this experience I have learnt that you must always question what you are being told and do your best to get the doctor, consultant or surgeon to explain, in simple terms or non-medical terms, exactly what they mean and what they perceive the implications to be.

I keep coming back to those particular words in the quote “there are things we don’t know we don’t know.” Try repeating them to yourself as you enter the consulting room…..

IBD Awareness, Stomas and Nursing Heroes

The theme for this year’s “World IBD Awareness Day” on 19th May was “Improving quality of life for people with IBD” and in particular the importance of Specialist IBD Nurses who can make such a big difference to patients’ lives.

My own experience of IBD Nurses is fairly limited. I have been lucky enough to only need to contact them with simple questions by ‘phone or email. I know, from conversations with other IBD patients, just how much support some get when they need help. I say “some” because not all patients have access to a specialist nurse and/or a helpline. A fellow IBD’er ran a poll on Twitter and as you will see from the results a significant percentage of patients are missing out.

Poll_1I’ll return to this point at the end of the post.

Last week saw “International Nurses Day” (12th May). It was an opportunity for patients to take to social media to express their thanks, publicly,  to nurses for the care they have received. (I would hope that patients thank their nurses face-to-face anyway).

I would usually fight shy of naming my nursing heroes. Patient confidentiality works both ways but there are two nurses who made a huge difference. If you will indulge me over the next few paragraphs I will explain their significance.

I’ve broadened the definition of “specialist IBD nurses” slightly to include stoma nurses as it neatly allows me to combine both the subjects of this post.

Whilst stomas are not the sole preserve of IBD patients it is a sad fact that many of us will end up with one, temporarily or permanently, at some point. I’d like to explain how the right support at the right time made a real difference to what could have become a very difficult period of major adjustment – getting stoma’d.

In August 2010 I had already been warned that I might come out of the operating theatre with one and to that end I had met with Fiona, the first of my nursing heroes, one of the stoma nurses based on the 12th floor at St.Thomas’ Hospital. She had spent time with me during the pre-op period explaining just what wearing a “bag” involved, some of the challenges I would face, answered my many questions and then marked the optimal site on my abdomen for the surgeon to aim for.

Coming round in Recovery, post-op, it wasn’t a great surprise to find the worst had happened. For those first couple of days after surgery you are so high on a cocktail of drugs that seeing your own, living stump of intestine poking its way through your abdominal wall is somewhat surreal. It’s at the point when your consciousness returns to some form of normality that reality hits and you need all the support you can get to start coping with this alien being and alien lifestyle. The thought of carrying round a bag of s*** fixed to your waist…..

Calmness and confidence are the order of the day. Fiona provided both in pouch loads. Nothing flustered her and that positive attitude transferred across. (Well, I like to think it did, but reading her ward notes from the time proved that reality may have been slightly different). She patiently visited me each day until she was confident that I could manage on my own.

Wind forward to the day of discharge and suddenly you’re home, alone (metaphorically speaking). It’s down to you to manage without the immediate support available on the ward. Fiona gave me a follow-up call to make sure everything was going OK and at this point my care was handed over to the local stoma nurse. This was Julie, my second nursing hero, based at East Surrey Hospital. She made contact shortly after my discharge and came to see me a couple of days later. She immediately put me at my ease and like Fiona was calm and unflappable.

I saw her on several occasions, not always in the best of circumstances. There was the time when my bag started filling with bright red blood, and the time when the stoma started prolapsing, oh, and the odd leak. Each of these problems could have knocked my confidence for six but each time Julie had a solution and some comforting words. By the time I was ready for the reversal operation I had become completely at ease with my lot.

There was never any question of a stoma nurse not being available either in person or at the end of a ‘phone. Why should it be different for Specialist IBD Nurses? I wonder if it comes back to the old idea of IBD being the “invisible” disease. Stomas are visible; tangible. For many IBD patients, those who have not undergone surgery, you really wouldn’t be able to tell they were suffering from IBD just by looking at them. Maybe that’s why IBD is not given a universal high importance.

You would think that providing these services would be a “no brainer”. Even if we ignore the advantages to the patients themselves then surely they must make sense on purely economic grounds. They act as a filter between the patient and the consultant. This will alleviate some of pressure on consultants’ time and potentially avoid the need for booking short notice outpatient appointments which inevitably means overloaded clinics. They may even reduce the number of visits made to the frequently beleaguered Accident and Emergency Departments.

I guess that it is all down to squeezed budgets and IBD not being sufficiently high profile to make it a political “hot potato”. This is why we need IBD Awareness Day.