Next steps

This is the follow-up post to “Where do we go from here?” posted on 3rd December 2016. (…and my record for future reference….)

Gastro Appointment – Guy’s Hospital 12th December 2016

As the date for the appointment drew closer my stress level increased. Not from the potential medical implications (though some might doubt this!) but the pure logistics of getting to London by 10:20am. It shouldn’t be a problem until you realise we have to rely on Southern Rail actually running a train. As it turned out my train was exactly on time but afterwards there were no more heading to London for 2 hours.

Having arrived at Guy’s Hospital with five minutes to spare I was greeted by a nurse who explained that the clinic was running 45 minutes late. I asked her to put a note on my file that I wanted to see my usual consultant (the top man). The wait increased to just over an hour when I heard my consultant calling my name. TIme to see if there were some answers. I produced my list of questions/comments.

We started out by discussing the outcome of the MDM. Had they been able to reconcile the apparent contradiction between the colonoscopy results and the MRI scan? No, they were at a loss to explain the differences.

The MRI report noted a 100mm stricture in the transverse colon and another in the ascending colon. Neither had been apparent from the scoping. The scan also showed adhesions, one of which was between  intestine and bladder. This could potentially lead to a fistula developing between the two. The tell tale sign would be gas when passing urine. That was a new one on me and certainly not something I had experienced so far.

The word that worried me was “fistula” but he pointed out that it was a possibility not a certainty.

The options left were to repeat the colonoscopy, or the MRI scan, but a barium enema, which is a test designed to look at the colon, would be preferable. (Not sure for whom. I still remember the last one over 30 years ago.) Rather than going straight to another procedure he suggested that we carry out a calprotectin test and if the result was the same or higher than last time (512) then it would be time to start practicising the buttock clench, so vital for the enema.

He asked how I felt generally. My answer was “very well” apart from every 10 days or so getting an upset stomach for half a day then back to normal. There was also an incident when I seemed to be leaking fresh blood but it only lasted a day and I concluded it was purely mechanical, maybe a burst blood vessel. He agreed with my conclusion.

I explained that I was keen to remain drug free having been taking no Crohn’s medication since 2010 (post-ileostomy). Was that an option with mild inflammation? Yes. The aim would be to start treatment early enough, to avoid surgery, should the inflammation worsen. (The knife is always a threat though). In line with my aim of not taking any new drugs I hadn’t been to see my GP about starting Questran for Bile Acid Malabsorption. I would remain on just Loperamide and adjust the dosage accordingly.

The one question I forgot to ask was “Does my reaction to Azathioprine (bone marrow suppression) suggest that some of other common drugs may be unsuitable?” That will have to wait for the next appointment.

I would be having my annual upper GI endoscopy at St.Thomas’ the following week and was wondering if we should also be monitoring my liver for stiffening (PSC). He said I should ask the endoscopist as it was their specialist area. The visit would also give me a chance to drop off the calprotectin sample to the path lab. I would then need to email my consultant in mid-January to get the results. Fingers crossed for <512. Clench.

At the end of the appointment I mentioned that I had eliminated a major element of stress by no longer commuting to London and have virtually retired. As I now had time in my hands I would be keen to do something for the IBD Community.

What is so nice about these appointments is that you never feel rushed. Every question gets a considered answer and all decisions are made jointly. Excellent.

After the appointment it was off to have lunch with a fellow IBD sufferer and then on to meet up with an old colleague for a coffee before attempting to get a train home.

Donald, no not THAT one

As part of last year’s Health Activists Writer’s Challenge we were asked to find a “quotation that inspires you”.

The quotation I chose 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. I actually used this quote….

Here goes. Over to that well known US philosopher, Donald Rumsfeld. It’s the quote he was ridiculed for it 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 salt properly what would you take that to mean? I took it at face value, I would need to up my intake of salt 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 know 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 potential 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 or consultant 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…..

Life Changing

Monday 11th October 2010 – OPERATION DAY

The operation time slipped from the 11:30am originally planned but eventually I was collected from the 12th floor and arrived down in the anaesthesia room at 12:30pm. The theatre team were ready for me and started the preparation procedures. They seemed to be a very happy crew, laughing and joking and that helped put me at my ease.

The anaesthetist I had met earlier then appeared. He greeted me with a broad smile and said he was ready to fit the epidural. Once that was done he said I’m just going to give you a mild sedative to relax you. I just drifted off into oblivion. Never trust an anaesthetist.

That’s the last I remember until waking up at six o’clock in Recovery. It was freezing. I was feeling no pain as the epidural was doing its job well but I was freezing. Shivering. Violently shivering. The house doctor, that I had seen in my room that morning, came up to see how I was. His first word was “Sorry…” so I knew what was coming. He told me it was a four and a half hour operation and that because of what they found when they opened me up it was necessary to have a stoma in order to give my large intestine a chance to recover. He lifted the blankets so I could see what they had done. It didn’t really come as a shock as I always knew it was a possibility and was mentally prepared for it. I can imagine what it would have felt like if I hadn’t been forewarned.

By late afternoon my wife was starting to get concerned. It must be a lot worse for those sitting at home waiting for news than the patient who is comfortably numb. She hadn’t had any news on how the operation went so she rang the Ward. They told here that I hadn’t arrived yet but would call when they knew what was happening. Just gone six thirty a doctor rang to tell her that I was OK. It had been complex surgery and I was still in Recovery.

The Team in Recovery were concerned about my readings, especially the temperature. At one point I had a “bair hugger” put round me which is a hollow blanket into which hot air is blown. Now I know what a formula one tyre goes through on the grid. I was offered a warm drink just a couple of hours after the operation. No more “nil by mouth”. It wasn’t until I was finally wrapped up in a large, microwaveable blanket that my temperature began to return to normal and I could be taken up to the ward. By now it was around eight o’clock.

Another huge change over the past few years is being able to use a mobile phone in hospital. I suppose it was inevitable as people would use them whatever. I asked the nurse if I could get my phone so I could ring my wife. As I explained earlier, they had locked my valuables in the ward safe and the night shift didn’t know the combination. Very frustrating.

I was taken to Northumberland Ward on the 11th floor, where I spent the rest of my stay. I had been expecting to be put in Page Ward, as that was the ward specialising in colorectal surgery. Unfortunately there were no beds available so I was put into the sister ward next door where they specialised in upper GI conditions.

{I felt really good and so could have easily written up my blog if I’d have had my iPad. (I imagine this was a post op high induced by the drugs). I finally managed to get hold of it the following morning to write this post.)

The house doctor came to visit me again to see if there was anything I needed. I asked him if he could ring my wife and tell her I was safely up in the Ward. He had a number of other things to take care of first but eventually she got a call at eleven thirty……..

I said at the top of this post that it was a truly life changing experience. I’ll go into more detail in another post but because of it :

  1. Lost my terminal ileum and gained BAM (bile acid malabsorption)
  2. Got stoma’d
  3. Started my relationship with St.Thomas’ Hospital
  4. Became very laid back about all things medical
  5. …and started blogging

Post Op Note : I never fully understood exactly what the operation involved. Earlier this year I contacted one of the surgeons and using the operation notes and pathology report, he put together this sketch for me.

op-drawing-by-surgeon

Where do we go from here?

At the moment it makes a change to write a post not connected to the #HAWMC (Health Activist Month Writer’s Challenge) that I’ve just completed. Having said that, there is still a link because I have mentioned in a couple of those posts that I find blogging therapeutic. It helps me to be objective and get things straight in my mind.

This post is therefore primarily for my own benefit but any thoughts/comments/questions welcome.

Background

I’m off to see my gastro consultant at Guy’s Hospital in just over a weeks time (12th December). I’ve already started getting my list of questions ready but I want to make sure I capture all the relevant details. I’m expecting us to agree next steps given my recent test/procedure results.

Since my reversal operaion in June 2011 I’ve been taking no Crohn’s drugs at all and everything has pointed towards me being in clinical remission. I really don’t want to take any more medication than the current Omeprazole, Propranolol, Loperamide and iron tablets  that I am on for PVT (Portal Vein Thrombosis).

When I my consultant, almost a year ago I said “I feel fine. I can’t see why we shouldn’t stretch these appointments out to yearly intervals.”  I don’t know exactly how long it was before I started to regret it, probably about three months, as the bathroom dashes had returned. As ever, with IBD/Crohn’s, it’s not easy to pinpoint what has caused the change and now that I have the addition of Bile Acid Malabsorption to consider it makes it even more difficult.

I tend to discount stress as I like to think I manage it quite well. At that time I was commuting to London, or more precisely Canary Wharf, and the travelling was always unpredictable, mainly due to the truly appaling service provided by Southern Rail and the frequent RMT strikes. To be sure of getting a train meant getting up at five o’clock in the morning. Maybe stress did play its part this time. My wife has said I seem a lot more relaxed now that I’ve given up work. (I decided to semi-retire at the beginning of November but I’m open to offers for short term assignments.)

The upshot was that I emailed my consultant and explained the problem. He suggested a calprotectin test (stool sample) and we would decide what to do next depending upon the result. After three weeks (28th May) the test report came back showing a considerable jump upwards to just over 400, suggesting active inflammation.

A colonoscopy was arranged – 13th July – and the finding was “ongoing mild colonic crohn’s disease. No evidence of crohn’s recurrence in the neo-terminal ileum.” The previous scoping (February 2015) noted “mild, patchy erthema (redness) throughout the colon” but concluded “quiescent (inactive) crohn’s disease.”

Because a colonoscopy can only just reach into the small bowel an MRI scan was booked  to look at my small bowel. I didn’t have to wait long – 29th July with a follow-up appointment on 5th September to discuss the results. Suprisingly, the MRI showed a stricture in my colon even though the scope didn’t. Very strange. This conundrum would be put to the Gastro Dept’s next MDM (Multi Disciplinary Meeting).

The MRI scan also showed adhesions, which are usual after surgery, but I would like to know a bit more about locations. I’ve been getting an ache around ny anastomosis for a number of years but it seems to be worse in the last week or so. This may be down to lifting a couple of “heavier than they looked” objects. Yes, I know it was stupid but male arrogance etc…..

I’m intrigued to know how the MDM reconciled the apparently contradictory colonoscopy and MRI scan results? I would have thought the camera results would take precedence. I also need to understand if the adhesions, on the scan, are just confined to my rejoin (terminal ileum). We’ll talk about their conclusions on 12th December.

We also discussed the large jump in calprotectin level and he asked me to repeat the test to check whether this was a rogue result. Unfortunately the result, when it came back, was even higher.

Looking at the calpro graph it’s apparent that somewhere between November 2015 and May 2016 the inflammation restarted.

calproI mustn’t forget to mention that a few weeks back I was having a “do I call an ambulance” moment when I started loosing some blood from where the sun don’t shine (no, not Manchester). I concluded that due to the fact it was bright red it must be very fresh and the result of surface injury and did not warrant 999. By the next day I was fine again.

Over the last few weeks my digestive system seems to be back on an even keel so is it possible/advisable to continue without medication even though mild inflammation is present? Is any damage done by not taking medication for such a long time? Does the calpro trend suggest that the inflammation is getting worse? I have noticed that I can sometimes feel the action of peristalsis across my middle which I’m assuming is matter passing along the transverse colon. Maybe this ties in with the mild inflammation.

I will mention that I have not talked to my GP about Bile Acid Malabsorption as my digestive system seems to have returned to normal with just the odd blip every 10 days or so. Is this return to normality as a result of no longer commuting to London?

I’m booked in for an upper GI endoscopy on 21st December to monitor the growth of varices in my esophagus.  I’m wondering if we should be doing any further monitoring of my liver to look for worsening of the cirrhosis. Add it to the list.

I just need to turn the above into a succinct list  and I’m ready for the appointment. I just hope the newly announved ASLEF ovetime ban doesn’t stop the trains from running.

It should be an interesting session on 12th.