Grateful?

Every so often a post or podcast appears along the lines of “Why I’m grateful for my IBD” and every time I see those words I wince a little. Am I swimming against the tide? Am I the odd one out here? There is not one aspect of this disease (or its EIMs) for which I have any sense of gratitude.  I’m not doubting  those who are “grateful”. I can understand that,  just like IBD itself,  there are many “flavours” of coping mechanism and if it works for them then fine.

I’m not denying that I have met some fantastic people from the IBD Community, both online and in person, but then I’ve also done the same through work and hobbies….and I haven’t needed IBD to give my life direction, focus or convince myself I have staying power.

Having said I’m not at all grateful I quickly need to counter that by saying neither am I resentful or regretful. The worse thing I could do is get into an “if only” mindset ie. “if only I didn’t have IBD I could have….”. I have thought long and hard about this subject and made my peace. I can’t think of many things worse for one’s health/mental health than living a life of regrets.

Have I always taken this attitude? The honest answer is “I don’t know. I can’t remember“. My medical memory was reset around 2009 and before that I can recall very little. I have now managed to fill in the physical events with the help of a medical records, photo library and my wife’s amazing memory for dates. I cannot do the same for my emotions or feelings apart from knowing I was sh*t scared of going under the knife but I don’t think I had any bitterness at having Crohn’s.

When surgery became inevitable in 2009 my emotions could have gone in one of two directions. I  would have understood if i had become very anxious, given my attitude to surgery, but instead I went into a very relaxed, laid back mode. I’ve manage to maintain it ever since. Clearly a prolonged period of remission has helped but a couple of serious EIMs could have derailed it.

IBD has certainly taught me a lot both about the disease itself and ways of living a relatively normal life despite of the everyday issues that it raises….but “grateful”? Definitely not.

..but why the Octopus?

When I was looking for a book title and a name for my rejuvenated blog I wanted something slightly “off the wall”. Whilst I was writing the chapter about surgery looming I came across the consultant’s explanation of the CT scan he had in front of him. “It looks like you’ve got an octopus in there.” That set my imagination running and I pictured the scene in theatre where the surgical team had “released the octopus”, cut out the offending bit and then wrestled the remainder back, safely, into my abdomen.

Search for title over and seed of idea for book cover sewn.

As I neared the end of writing it occurred to me that there was a second octopus to be wrestled. It’s potentially a problem for all of us that suffer from chronic illnesses, namely, managing our route through the multiple tentacles of the NHS system with multiple consultants, procedures, specialities and clinics. Add to this the lack of a universal patient record system that can be accessed in different hospitals and it is apparent it’s not neccesarily a simple process.

Life was simple when being treated by one gastro team at one hospital. It wasn’t until 2010 that another hospital entered the equation as my local hospital were unable to cope with the complexity of the forthcoming surgery and referred me to St.Thomas’.

This calls for a diagram –

My Personal Octopus

Some “tentacles” act in a co-ordinated manner; others seem to be a law unto themselves. Some tentacles communicate well with the others, unaided; others need a helping hand.

For example, if you’re booked to go for a procedure, let’s say an MRI scan, then it makes sense that your next gastro appointment is after the radiologist has written the follow-up report. Similarly, if you’ve had biopsies taken during a colonoscopy, you want the results to be available before you meet your gastro. This is not rocket science but if not co-ordinated then you simply end up wasting valuable appointments, consultant’s time and, just as importantly, your own time.

In the past I’ve let the system take its course but with mixed results so now I like to give it a helping hand. This is getting more difficult with the apparent demise of the dedicated medical secretary. For several years, when the frequency outpatients appointments and procedures had reached its height, I had the pleasure of dealing with a truly exceptional one. Let’s call her Sally. Any issues would be quickly resolved by a  simple exchange of emails. Sadly she left the NHS.

Nowadays I contact my consultant directly, but sparingly. I don’t particularly like doing it as I know he is already exceptionally busy. I can justify this approach to myself as in the long run time/resources will be saved by avoiding abortive appointments.

I suppose you could now say that I am “massaging the octopus” rather than an all-out Greco-Roman grapple.

 

 

 

The Red Stuff

Friday 12th November 2010

At about a quarter past six I noticed that I appeared to be losing blood. I went off to the bathroom to investigate and found that he contents of my pouch had turned bright red. My immediate thought was that something had come apart internally and that I needed to get urgent medical attention. The level in the pouch was visibly increasing but not filling so fast that I would need to change it for a while.

My wife was already outside feeding the ponies so I went to explain to her and told her that I had a problem. I needed to get to hospital quickly. Knowing it was a Friday night and that A&E (Accident and Emergency) was likely to be busy we decided to call 999 rather than trying to organise a lift down there. I rang our neighbour to warn her what was happening and ask her to come and let the dogs out and give the ponies their late night haynets. We had no idea how long I’d be down at the hospital.

The ambulance turned up very quickly. Seven minutes from call to arrival. Once onboard the crew went through a series of tests and then we were off. No siren or blue lights. It wasn’t a very good ride in the back of the ambulance as they sway a lot and the country lanes around where we live are very twisty.

We arrived at East Surrey Hospital A&E at just after 7:15pm. One of the crew said: “we’re taking you into the Rapid Assessment Unit but don’t be fooled by the title”. His scepticism was unfounded and within 10 minutes I was laying on a bed having more tests and a cannula being inserted into my arm. I was then taken to the MAU (Medical Assessment Unit) but they were full so we had to wait in the corridor. This was probably the worst part of the experience because you couldn’t see what progress was being made in clearing the queue. I’m not sure what time I was actually wheeled into the Unit but it was probably around half past nine.

I was seen by one of the doctors and we went through my medical history and I explained what the current problem was. I got the distinct feeling that he wasn’t keen to explore my stoma himself and didn’t even suggest that we remove the bag to get a better look at it. He went off to ring one of the surgeons to see what should be done. At this point a friendly porter appeared to take me down for chest and abdominal x-rays. He remarked how busy they were and that it hadn’t been this bad since July. Surprisingly enough Friday and Saturday are not usually their busiest nights.

With the x-rays complete I was wheeled back to the MAU and it looked like I had missed my place in the queue. I was told that the plan was for me to be taken to the SAU (Surgical Assessment Unit). In the meantime the doctor came back and said that he needed to take an arterial blood sample which would probably take a couple of goes and would be very painful! Thanks for the warning. I needn’t have worried as he hit the artery first time and I had become very used to having needles, of varying lengths, stuck in me.

Rather than call for another porter the sister wheeled me down to the SAU herself. I was told that the doctor knew I was there and would be along to see me. It was now about 11:00pm and I’d still not seen anybody so my wife went to find out what was going on. The doctor was seeing another patient but would be with me shortly. A few minutes later she appeared and apologised that it would be necessary to ask me all the questions again. I had remembered to bring a copy of the discharge letter from St.Thomas’ which explained what the surgeon had done. As we had been unable to understand it completely, due to the long, medical terms, the doctor gave us a translation.

As she specialised in surgical cases she had no fear of removing the pouch. She then examined my stoma, inside and out, and came to the conclusion that the bleeding was external but I was right to have come down to the hospital. I asked her if she was considering giving me a blood transfusion but she said that unless my blood count was getting worse she was happy for me to be discharged. She did give me the option of staying in overnight if I was concerned but I decided that I would be OK. Other patients needs would be far greater than mine.

There was a short wait whilst the nurse removed the cannula and then I could get dressed. I rang my sister who very kindly came out and picked us up. We were home just gone one o’clock. Not what we had planned for our Friday evening. I was famished as I hadn’t eaten or drunk anything since 5:30pm. I grabbed some toast and a coffee and then went to sleep sitting up on the sofa.

What went wrong

When I saw the stoma nurse the following day she gave me a thorough examination and announced that I had developed an abscess below the stoma which I had not been able to see. The abscess had burst but “luckily” the blood had made its way into the pouch not my clothing.