Category Archives: MRI scan

Medical Records

This post has been prompted by the topics for #patientchat discussion on Twitter, “Medical Records” (#Tweetchat – Friday 4th August 2017 13:00 EST 18:00 BST).

I have touched on this subject before but it’s always worth revisiting. These are my experiences within three UK NHS Hospital Trusts and span 40 years.

These are the topics set for the #patientchat discussion

T1: Do you have access to your Electronic Health Records (EHRs)? If so, does that info help you actively share in your healthcare decision making?

T2: What are benefits to patients being able to view the notes that doctors, nurses and other clinicians write after a visit?

T3a: Do you sometimes find the amount and type of info available in your EHRs overwhelming and/or incomprehensible?

T3b: If so, what are some ways to make it easier to decipher and use in your decision making?

T4: What are your tips for keeping your healthcare records organized? Do you use any resources?

T5: Is it important to request past medical records from your doctors and keep copies for yourself?

T6: What do you think some of the barriers are to implementing EHRs? How can we work together to overcome them?

Ideal World vs. Reality

In an ideal world each of us would have our full medical record available in a universally readable format that could be easily accessed by any medical professional that is treating us.

Now let’s look at the real world. If you are a relatively new patient who hasn’t moved hospital and not had an in-patient stay then you may indeed have a complete record, held electronically, on an IT system. If, however, you are a long term patient who has moved between GPs and hospitals and spent time as an in-patient then the situation is far more complicated. You are likely to have a mixture of hand written notes and observations, type written letters and, more recently, computer generated letters and test reults. There are also x-rays and scans to consider.

The above does not address the issue of universal access. The last attempt in the UK to implement a system was NpFIT (The National Programme for IT in the NHS), a project initiated by the Labour government in 2002 and cancelled some years later having spent in the region of £12bn and having delivered nothing. Government backed IT projects are notorious for being disaster areas.

Patient Rights

Where does that leave the patient?

In the UK you have a right to access your medical records. Since 2000 I have received copies of the follow-up letters from outpatient appointments  that the consultant sends to my GP. This may be sufficient for your needs but I needed to fill in a lot of missing detail for the book I was writing. For the payment of a fee you can obtain copies of all your medical records . Requests forms are available online for each Healthcare Trust and as I had been treated by 3 different Trusts I filled in 3 different forms and sent them off with the relevant payments (between £20 and £50 depending upon whether you just require medical notes or want copies of x-rays and scans as well).

A series of packets duly arrived and I was amazed to find they really  did contain ALL my medical notes from October 1977 to the present. Two Trusts chose to send hard copies whilst the third had scanned the notes to a pdf file of over 700 pages. I also had loadable files for CT, MRI and US scans. The only things missing were certain early x-rays.

Information Overload?

My initial reaction was “information overload” but over the space of a few nights I sorted the documents by type and date order and picked out the “juicy bits”. Those bits that explained some long, unanswered questions about my treatment. Probably the most fascinating were the ward notes from the times I spent in hospital. These are not usually documents that you get to read.
The discs containing CT and MRI scans looked a bigger challenge but I found a great piece of software called OsiriX which opens and views the files. (The Lite version of the software is available as a free download). Hours of fun looking at 3D visualisations of your innards.

What use are they?

What can you do with, potentially, a huge amount of very detailed medical notes? Whilst they might be of academic interest to the patient and provide a fascinating insight into how you arrived at your current state they are not a lot of use to your medical professionals due to the sheer bulk of the information. This is especially true if you are seeing a new consultant who needs a succinct overview of your medical history and current issues or if you end up in A&E (ER) where they need to start treatment as soon as possible.

It gets considerably more complex if you are suffering from multiple conditions. Initially I put together all the major events into a spreadsheet table. Going through the process certainly gave me a good grasp of my overall health and I have ended up a much better informed patient. This helps greatly when you need to take decisions about the course of future treatment. It helps clarify the most important issues.

If you are still find it difficult to work out how your health threads come together then draw a diagram. I’ve tried a number of different format. There are a couple of examples below :

In Practice

In February I ended up in our local A&E (ER) Department as I had turned yellow. The first person I saw was a triage nurse who asked lots of questions about health conditions, history  and medications. When we had finished running through the various ailments she complimented me on my knowledge. (Definitely a result of researching and tabulating my health records)

Next I saw an A&E Registrar. Who asked the same questions but what would he have concluded if I hadn’t been able to fill in the details? He would have been confronted with a patient with a large scar up the midline and an appendectomy incision. He wouldn’t have been aware why the large scar was there and would have assumed my appendix had been taken out. He would be unaware that I had Crohn’s disease, that there were additional veins growing in my esophagus (varices), that my spleen was enarged or that my platelet count was around 60. Valuable time could have been lost trying to investigate the wrong problems.

Do It Yourself

As a result of my A&E visit I wondered – is there was a standard, minimum set of data that should be available? Is there a standard format for the data? I searched the internet and could find nothing. I suppose a good starting point would be the questions the triage nurse had asked – personal details; current medication; current medical conditions; and any known allergies.

There are, of course, the likes of SOS Talisman bracelets which have some very basic information engraved on, or contained within, them. There are several subscription services which will hold your medical information and can then be accessed via a unique code you wear on a bracelet or dog tag, but these appear to be US based only and the data held was not in sufficient detail.  How feasible would it be to produce a standalone, wearable device?

I had a go at making one using a USB bracelet. I settled upon two top level documents – i) a simple, overall summary plus ii) a detailed table that recorded each appointment or procedure. These documents are stored as pdf files and linked to various back-up documents such as laboratory or histological reports.
I

USB Bracelet

There is one problem. Security. Does an NHS computer allow the reading of an external USB stick or is access restricted to protect from viruses etc? (Particulary relevant since the recent cyber attack). I have a feeling this is a non-runner so I’m favouring storing the files on a secure server and potentially accessing them via a QR code on a dog tag (or even a wrist tattoo)

Future Developments

There are more references appearing where patients are recording their consultant appointments or having consultations via Skype. Would these audio and video files need to be kept as part of your medical record? Do medical professionals expect to have access to any recordings you make?

Watch this space…..

Fifty Shades of Grey

Let’s get my latest appointment out the way…….

Monday – 24th April 2017 – Gastro Appointment, Guy’s Hospital

I hadn’t planned this appointment, neither had my gastro consultant but the booking system had other ideas. It must be set to auto repeat every 6 months and doesn’t take into account any ad-hoc appointments in between. I had intended to cancel but I’m pleased I didn’t as there were things that needed talking through. I produced the obligatory list of questions (responses in red) :

1.    Biopsy results (from 11th March colonoscopy) – the report from the path lab said that the biopsies were consistent with “quiescent” Crohn’s disease. This result was about as good as it could get. Once you have the disease there will always be some signs of it, even when in remission.

2.    Explanation of rising calpro levels given result of recent colonoscopy?       – to be honest, he simply did not know what was causing the raised calpro levels. He had been concerned that something had been missed during a previous colonoscopy hence the repeat, in March, carried out by his trusted colleague (and watched by an audience of trainee, international gastroenterologists).

3.    If calprotectin tests not giving meaningful pointer to Crohn’s activity what monitoring regime should we adopt? – I had anticipated what the answer would be and I was right. If you start to feel the Crohn’s is becoming active then we’ll take it from there.

4.    The upper GI surgeon (Professor), who I saw locally (see previous post) regarding gallbladder removal, was talking about referral to a specialist liver facility “in case of needing a transplant” arising from complications during the  cholecystectomy (sounded very drastic) – my gastro agreed that I should be referred to a specialist unit in view of my concurrent conditions. The most likely unit would be the one at Kings College Hospital. The issue of needing a transplant would be a last resort if something went very wrong during the operation. He typed a letter to the Professor suggesting that the referral should go ahead.

5.    Awaiting ultrasound appointment (locally) to look at liver, gallbladder, bile duct and portal vein – noted. No date as yet.

6.    Pros and cons of having gallbladder removed? – to be discussed with specialist liver facility. Even if I decide not to have surgery I would at least be on their radar so that should I end up having another jaundice incident, that needed urgent resolution, they would already be aware of my case.

7.    Fibro-scan to see if liver cirrhosis progressing – he filled in the online booking form to request the scan. (Date now through – 4th September)

8.    Current weight 78.2kg. The target weight set prior to my ileostomy (October 2010) was to get UP to 90kg, which I achieved with the aid of 3 x Fortisip (300 calories each) per day. My subsequent decline by 12kg has been quite a loss – whilst I felt fit at this reduced weight it was a lot lighter than the previous target weight. I thought I had better point it out. We would continue to monitor.

9.    Next steps – ultrasound scan; fibro-scan; no further colonoscopies at present; follow-up appointment in 6 months time (the booking system should already be doing that); yearly endoscopy at Christmas to check varices + appointment with specialist liver unit.

50 Shades of Grey

For 30 years I really didn’t want to delve too deeply into my health. It was clear, black and white, I had Crohn’s Disease (after the usual “is it IBS debate” within the medical profession). It was centred mainly around the join between my small and large intestines (a common location) and had caused a stricture. Despite this I spent many years in remission.

In the last few years my medical life has become more complex with new issues arising. Most of them  are very definitely not black or white.

It started with the dramatic fall in my platelet count that has never recovered (thrombocytopenia). Was it really as a side effect of the Azathioprine I had been taking for 8 years? You would expect it to have bounced back when I stopped the drug. Is it related to my spleen becoming enlarged? Could this be the cause of the platelets issue instead? Two bone marrow biopsies later and there is still no definitive answer.

Next there was the incident where new blood vessels had grown in my esophagus and then burst. A subsequent x-ray showed a blood clot had formed in my portal vein (thrombosis) which had increased the pressure in the veins higher up. Most likely cause of the clot? The current theory is it’s the result of peritonitis following a perforated bowel operation in….1979! Really? That long ago? Apparently there is always a risk of PVT during any surgery. I’ve also seen research that once you have Crohn’s patients you are more susceptible to clots.

As a result of the above incident it was suggested that I might have Primary Sclerosing Cholangitis (PSC) I had a fibro-scan on my liver which showed signs of cirrhosis. What caused that? It certinly wasn’t alcohol related as I drink very little. Is it linked to that blood clot? I then had a liver biopsy and, thankfully, it showed no PSC.

What caused my recent jaundice incident last January? I felt no pain whatsoever only violent shivering and turning yellow. It must have been gallstone related but this is usually accompanied by the most excruciating pain. Again there is a potentially a link between Crohn’s and the increased likelihood of developing gallstones.

…and so to my latest consultation. Yet another puzzle – how to explain a rising calprotectin level with a colonoscopy, and biopsies, that showed I’m in remission.

…and not forgetting the reason I had that second colonoscopy – to see if there was any evidence of the strictures which showed up on the MRI scan, which there wasn’t. Another conundrum and one that had also happened back in 2012.

…and, of course, there’s the biggest grey area in the room – what causes Crohn’s Disease?

I’m not going to lose any sleep over the above. What’s done is done. It’s more out of curiosity that I would like definitive answers. In an ideal world I’d get a gastroenterologist, a hepatologist and a haematologist in a room together and let them reach a concensus on likely causes. That isn’t going to happen anytime soon…….

…but maybe the combination of conditions would at least give me a winning hand playing “Illness Top Trumps”

 

Do you mind an audience?

Gastro Appointment – Guy’s Hospital – 20th February 2017

I knew this was going to be an “interesting” consultation and it even started in a strange way. Would you expect to be greeted by a live violinist in the waiting room? Whilst I applaud the hospital for trying something different I’m not sure what it did for other patient’s stress levels. It didn’t help mine.

Having been waiting for over an hour a nurse appeared and announced the clinic was running 90 minutes late. Maybe she had made an earlier announcement but was drowned out by the violin. I knew I would be in for an even longer wait as I had requested to see my usual Consultant.

When I was finally shown into his room, he apologised for the delay and we started working through my list.

1 – Calprotectin result – previously 512. Had now risen to 895. I thought this was not unexpected as I was starting to feel a certain amount of pain when food passed across my anastomosis and through the transverse colon.

2 – Dependent upon the above – have you discussed further investigation? Barium enema? We had agreed before Christmas that, dependent upon the calprotectin result, further investigation could be needed. He favoured doing another colonoscopy.

3 – Run through the last follow-up letter with translation. What are implications of fistulas and adhesions?  We went through the letter and made sure I understood the medical terms. I was concerned that the mention of fistulas, strictures and adhesions meant only one thing – surgery. He responded that the possibility of fistulas was the most concerning; adhesions were to be expected but he was still was struggling to understand the apparent differences between the MRI and what he had physically seen during the colonoscopy. Strictures should have appeared on the camera.

I asked if it was possible for the Crohn’s to have moved from my small intestine to my colon. He said that it did not usually happen. A repeat colonoscopy would look for this. He asked if I minded having an audience as they were running a visit for ten overseas gastroenterologists to show how endoscopies were carried out at St.Thomas’. I really wasn’t fussed and it meant that I had the date set there and then. (Wonder if they will film it for YouTube. Would be taking selfies to another level).

4 – Plan for treatment – start Crohn’s medications. The most likely treatment would be one of the “MABs”. We discussed my previous experience with Infliximab and that was duly noted on my medical file. I wondered if I ended up needing regular infusions whether these could be carried out locally rather than needing a trip to London each time. He said they would encourage that but would still keep control of my case.

5 – Recent trip to A&E with jaundice. Violent shivering. Nausea. Turning yellow. Ultrasound scan 21st February. Need to make sure results are passed on. I quickly ran through my recent trip to our local A&E. He was surprised that during the whole incident I felt no pain. I mentioned I would be having an ultrasound scan the following day. (See below)

6 – Did East Surrey liaise with St. Thomas’? Did blood test results get passed over from East Surrey? There had been no contact with East Surrey. Something for me to chase up when I went there for the ultrasound.

7 – Hb looked low to me. He was not concerned about my Hb

8 – Do the treatment pathways change with age ie. over 60. Have any studies been done into the needs of the “older” patient? The main consideration would be the type of drugs used and their effect on an immune system that weakens with age.

9 – Opportunities for doing some more public speaking. Taking year off of work, maybe longer. There were plenty of opportunities. The danger would be becoming overused! I explained that I wanted to do something that would help the cause of Crohn’s patients.

10 – Not felt well for last 2 days. ED. Taking more Loperamide to try and combat. Have any patients reported that Loperamide from different manufacturers having varying levels of efficacy? I had been suffering bouts of having to rush off to the bathroom and it was the uncertaintity of the cause which I struggled with – virus, crohn’s, BAM or dodgy food. He suggested that I should go and see my GP to arrange a prescription for Questran (a bile acid sequestrant) so that it was available should I decide to start taking it. I had wondered if it was possible that different Loperamide makes could be causing my present problem? This rang a bell. He suggested I put it to the test by using the different makes in turn and noting the outcome.

I then went off to find the Endoscopy section to try and pick up the colonoscopy prep but would first need a time and date for the procedure. After a lot of ringing around the very tenacious nurse managed to get it all sorted out. Colonoscopy planned for 10:00am Saturday 11th March. The Endoscopy Unit were currently reviewing how the prep would be dispensed so I was given a prescription to take down to the Outpatient Pharmacy.

Roll on 11th March……

Ultrasound Scan – East Surrey Hospital – 21st February 2017

In complete contrast to yesterday’s delays, I arrived at the Imaging Unit early, waited five minutes and was then shown into the ultrasound suite.

They had the luxury of warmed lubricating gel! The scan took around 10 minutes during which I discussed with the sonographer what I would expect her to see – a large gallstone (first seen in 2014) and an enlarged spleen. At first the gallstone wasn’t apparent but when she applied the scanning head from a different position it appeared, except it was now a group of small stones. She wanted to see if they were mobile so got me to stand next to the US unit and then jump up and down. (I’m pleased they don’t get you to do this during a colonoscopy.) The stones had moved to the bottom of the gallbladder. The whole procedure was completed before my due appointment time.

I mentioned that I needed to get a copy of the report sent to my consultant at St.Thomas’. The sonographer asked me to return to waiting area and she would print off a copy of the report for me to take away.

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.

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.

 

A little further down the road?

5th September 2016 – Gastro Appointment – Guy’s Hospital – 10:20am

…the story so far can be found in the post “Crying Wolf”

Today’s appointment was to get the results of the MRI scan I had five weeks, or so, ago and then work out the way forward to get my health back on track.

It was the first appointment following my retirement so no chance to just leave the office for an hour to attend. It would need a special trip and chance to suffer the reduced timetable operated by Southern Rail. Having left home in plenty of time I arrived at Guy’s only two minutes before the due time. Almost immediately my name was called for me to be weighted. I had lost around 6 kilos since my last appointment. I asked the nurse to put a note on my records that I wanted to see my usual doctor. “No problem”.

Being weighed allows you into the inner sanctum, the inner waiting area, from where you are collected by your consultant. A student approached me and asked if I would be prepared to take part in some genetics based IBD research. I’m always more than happy to help so he left me a document to read and would talk to me after I had seen the consultant.

The waiting area was remarkably quiet. It’s been jam packed on previous visits and I’ve waited over an hour to be called. I’ve been preparing to give a talk on “Living with IBD” as part of a lecture for undergraduate nurses on chronic conditions. I had intended to do it completely off the cuff but I have come to the conclusion that is unrealistic. I’ve written out what I want to stay and the software has then converted it to speech so that I can listen to it on my iPod. This seemed like a good time to give it another listen.

I was miles away, submerged in the narrative about weight loss and fatigue in IBD, and then realised my name was being called. It was my consultant. I apologised for appearing to be on another planet and we made our way into the consulting room. By now it was 10:50am.

I had my obligatory list of questions with me :

  1. Results of colonoscopy 13th July 2016 – “ongoing mild colonic Crohn’s Disease. Previous colonoscopy” – 25th February 2015 – “mild, patchy erythema throughout the colon, however no ulceration seen”. Has there been a change? Does it need to be treated?
  1. Results of MRI scan?
  1. BAM – could this be causing weight loss etc. Treatment – Questran (low tolerance) Colesevelam.
  1. Blood test organised for 2 weeks. Have asked for cholesterol to be checked

Starting with the 1) it did suggest that the Crohn’s has returned albeit mildly. I mentioned that my last calprotectin level had been elevated – around 425. He called up all my results and drew a graph which showed that the last result did not follow the trend. “Collect a sample pot on your way out and we’ll re-run the test in case that was a rogue value. Let me know when you drop the sample in so that I can keep an eye out for the result.”

I asked about potential drugs to treat the inflammation. (Usually I would have been kept on a maintenance dose of Azathioprine but the onset of thrombocytopenia back in 2008 had made this a non-starter). He explained that there were drugs that specifically targetted the colon that were used to treat ulcerative colitis. He mentioned a form of Budesonide. I have subsequently looked this up and found a NICE document about Budesonide multi-matrix (MMX/Cortiment). It is formulated to release at a controlled rate throughout the colon to minimise systemic absorption. The licensed dose is 9 mg in the morning, for up to 8 weeks. It was licensed in October 2014 for inducing remission in mild to moderate active ulcerative colitis in adults for whom aminosalicylate treatment is not sufficient.

2) What did the MRI scan show? Strictures in my colon but they hadn’t shown up on the colonoscopy. Usually a colonoscopy trumps an MRI scan so this was an unexpected result. He proposed to take the results of both to the next MDM (multi-disciplinary meeting) to try and come up with an explanation.

It also showed adhesions but the fact they existed was not news. Since shortly after my reversal I had been complaining of an ache around the anastomosis .

3) Given the very variable nature of my digestive system and my recent weight loss I wondered if it was finally time to bite the bullet and start taking a sequestrant to treat my severe bile acid malabsorption. I had been fighting shy of taking yet more drugs and have been controlling it Loperamide.

I asked if it would be possible to prescribe Colesevelam (the tablet form) rather than Questran (powders) as I had read many reports of the former being easier to tolerate. I was aware of the cost differential, a factor of 10. He said that for the good of the health service budget I should try the Questran first but this would be a discussion for me and my GP.

4) I mentioned that I had a blood test organised for a couple of weeks time and would send the results through to him. I had asked for a cholestrol check to be carried out.

He would organise my next appointment once the MDM had discussed my results. He then took me back to the student doing the genetic study and I spent 10 minutes answering questions and spitting (saliva into a sample tube).

Where did that get me?

I’ve learnt about the possibility of a new drug to treat the inflammation in my colon and I’ve set in motion potentially directly treating the BAM. I think I’ll leave the decision on that one until my next appointment when we have an answer on colonoscopy/MRI scan conflict.

…and in the meantime an old client has called me up to see if I would be free to do some work for them. Retirement will have lasted precisely 5 weeks…

The A to Z of my Crohn’s

30th December 2015 – I’ve been writing a book, maybe it’s more accurate to call it a journal,  showing how I went from diagnosis in 1978 to my current state of remission. From it I have extracted an A – Z.

It’s not meant to be an exhaustive. Some items are common to hospital or surgery and the rest are more specific to Crohn’s/IBD and related complaints but these things have amused, surprised, or quite simply, scared me along my “Crohn’s Journey”. I hope you learn a few new things and experience none of them…

….and I hope you will read my book when it sees the light of day.

(In the grand scheme of things my experiences pale into insignificance when you read some other Crohn’s patient’s stories of both surgery and their ongoing concerns)

Anaesthetist – the last person you see before going into the operating theatre. The one that says “I’m just going to give you something to relax you”. Don’t believe them unless your definition of relaxation is being knocked out cold and waking up several hours later, or am I getting mixed up with a good night out in Tooting? The next time you wake up you should be in Recovery (or Accident and Emergency if it was Tooting).

This may seem odd but I really look forward to the point at which you are about to get the sedative. From that point onwards you are totally in the hands of others. There’s nothing left for you to do or worry about that can influence what is about to happen. You can let fate take over completely. You’ll go to sleep and hopefully, when you wake up, the reason you’re in this situation will have been resolved.

On a more morbid note the anaesthetist could be the last person you will ever see so try and smile at them.

Banding – another new term on me and describes the action of “killing off” or “obliterating” a varicose vein by tying it with a rubber band. My veins (see Varices) were very inconveniently located down my esophagus so required a specially adapted endoscope to place the bands. After the procedure you can only eat very sloppy food for 48 hours as you don’t want solids to dislodge the bands before they have taken effect. BTW – I’ve just completed my 10th procedure.

Endoscopy Report

Bile Acid Malabsorption (BAM) – not something you see discussed very often. All the fun of Crohn’s-like bathroom dashes but without the inflammation. According to NICE the vast majority of patients, who have had their terminal ileum removed, will suffer from it. I wish I’d been told about this before they removed mine.

If I’ve got this right then your stomach digests food by dissolving it using bile acid. The mixture then passes into the small intestine and when it gets to the terminal ileum area the bile acid gets reabsorbed into the biliary system ready for the process to start again. If you’ve had the terminal ileum removed there is nowhere for the acid to be re-absorbed so it passes into the colon. The colon is not designed to cope with this level of acidity and its first reaction is “evacuate”, you can guess the rest.

There are various medications available to counter the effects of BAM. I manage with just Loperamide.

Bile Bag – the name says it all. I’d never heard of or seen one until I was recovering from my reversal operation in June 2011 and my digestive system had gone into lockdown. I was suffering from really bad nausea which the surgeon said affected around 25% of patients undergoing colorectal surgery. The decision was taken to relieve the pressure and I ended up with a tube up my nose and down into my stomach. Whatever comes out needs to be collected and that’s where the bile bag comes into its own.

Bone Marrow Biopsy – just the mention of this procedure is enough to make my GI consultant squirm. My initial reaction was “so you’re going to push a needle through my hip bone and take a sample of the marrow within? How does that work then? Can’t see that’s possible as bone is hard. You don’t need a drill do you?”

Despite my scepticism it is indeed possible to push a needle, with a little effort, through bone. I even ended up having it done twice. It stings a little but as the= haematologist said – “You’ve got Crohn’s, you’ve dealt with pain! This will be nothing by comparison”.

Cannula – the plastic tube with a sharp point that gets put into a vein, usually in your arm, to allow the introduction of fluids such as saline solution or blood transfusions. I’ve lost count of how many I have had during the last 35 years. They’ve been administered by nurses, paramedics and junior doctors. The first two have always been OK but letting a junior doctor near you with a cannula is a big mistake. I know they have to learn somewhere but I’d rather not be the guinea pig. I even asked the last doctor, who attempted a cannula insertion, if he was experienced in the procedure and he assured me that he was. Within an hour I had to have a new one inserted by a nurse.

Cannula

As you get more experienced at being cannularised, and especially if you are going to be on a drip for a while, you’ll get to know the best place for them to be positioned. Definitely avoid your elbow joint otherwise every time you bend your arm the flow stops and the alarm on the pump unit starts sounding. By preference the cannula should be sited somewhere that will allow you to eat, write, use a phone and go to the toilet without too much inconvenience.

One of my first experiences with a cannula was in 1979 when it was decided to feed me intravenously. The cannula was inserted just above my wrist and then a catheter was introduced than ran up a vein in my arm, over my shoulder and then turned back downwards for a few centimetres. It could have put me off for life as it took 5 attempts, two in my left arm and three in my right arm, before the tube was successfully positioned.

(If you’re wondering what the difference between a cannula and a catheter is – the cannula has the sharp end so is used to make and opening into a vein; a catheter has a blunt end and can be inserted into an existing orifice)

Colonoscopy – sticking a camera where the sun don’t shine. As with many procedures that you have to come to terms with when you have IBD the thought of what is going to happen is worse than the actual experience. I don’t find the colonoscopy itself too bad but I know that many do. It’s the 24 hour fasting beforehand that I struggle with.

I like to keep awake during the procedure as you get to see exactly what the consultant is seeing and if you have any questions they can be asked there and then. You find out what’s happening inside your guts in real time and don’t have to rely on being told after you wake up or at your next appointment.

Dexamethasone – a steroid – the work of the devil. Dexamethasone is like a steroid on steroids. About 5 times as powerful as prednisolone for the same tablet dose. It had been found that in some patients a short, sharp course of this drug could dramatically improve platelet count. I was about to have a liver biopsy and my platelets were very low so was given a dose of 40mg for 4 days. All was well for the first 3 days and then I started to get hiccups and an uncontrollable appetite but on day 4 I started acting as if I had Tourettes. Very odd. I mentioned this to my consultant some weeks later and he confirmed that steroids can have strong psychological effects. I won’t be taking those again.

Enhanced Recovery Programme – I had my ileostomy at St.Thomas’ Hospital in London and was given the choice of participating in their Enhanced Recovery Programme. I could have opted out but grabbed the opportunity with both hands. The pre-operative assessment, planning and preparation before admission mean that you are given comprehensive information on what will happen, when it will happen and the likely outcomes. Instead of going into the unknown when you enter hospital you already have a good idea of what to expect. I found it helped me to become incredibly calm about the whole situation.

Here’s a section from the NHS Institute for Innovation and Improvement as it neatly sums up what this is all about :

“The enhanced recovery programme is about improving patient outcomes and speeding up a patient’s recovery after surgery. It results in benefits to both patients and staff. The programme focuses on making sure that patients are active participants in their own recovery process. It also aims to ensure that patients always receive evidence based care at the right time.

Advantages of the enhanced recovery programme are:

  • Better outcomes and reduced length of stay
  • Increased numbers of patients being treated (if there is demand) or reduced level of resources necessary
  • Better staffing environment.

There are four elements to the enhanced recovery programme:

  • Pre-operative assessment, planning and preparation before admission.
  • Reducing the physical stress of the operation.
  • A structured approach to immediate post-operative and during (peri-operative) management, including pain relief.
  • Early mobilisation.”

Having read this explanation you will see how this fits in with the whole idea of “Active Patients” ie. ones who take an active role in managing their own health.

At St.Thomas’ you’re given the choice of participating in the programme. You can opt out but I grabbed the opportunity with both hands. The pre-operative assessment, planning and preparation before admission mean that you are given comprehensive information on what will happen, when it will happen and the likely outcomes. Instead of going into the unknown when you enter hospital for your operation you already have a good idea of what to expect. I found it helped me to become incredibly calm about the whole situation.

Part of the early mobilisation mentioned is being expected to drink fluids as soon as you come round in Recovery and then to be eating solids within 24 hours. A far cry from the 3 weeks “nil by mouth” that I had been through in 1979.

Fistula – yet another part of my learning process. It sounds like some unsavoury fetish but when I was told I had one I checked out its definition – “an abnormal connection between two structures”. Luckily mine were internal, between sections of intestine, so any leaking was kept inside but they can run from inside to outside the body and prove difficult to heal.

Flexible Sigmoidoscopy – a sort of Colonoscopy Lite. Before having my ileostomy the surgeon wanted to check what condition certain parts of my colon were in, so he carried out this procedure so would know what to expect once he wielded the knife.

A colonoscopy looks at the lining of the large bowel and may also look into the lower section of the small bowel. The scope used for a flexible sigmoidoscopy looked to be a much shorter instrument and only goes as far as the left side of the colon (which I guess means up to the sharp bend before the colon travels across the body). The tests require different preparation and sedation.

Gaviscon – disgusting aniseed flavoured pink sludge. As part of the attempts to clear the nausea following my reversal operation I was given a small container of Gaviscon to drink. The smell alone was enough to trigger a reaction but I gulped the whole lot down and within seconds…..well I won’t go into the details but suffice to say I felt a lot emptier afterwards and the pressure on my stomach was suddenly bearable.

It’s said that the most powerful of the five senses for triggering memories is the sense of smell. I am dreading ever coming into contact with anything that smells like it again as I’m sure my instant reaction will not be very pleasant for either myself or anyone within two metres of me.

Haematology – not my most favourite department and not because of the consultants’ abilities as haematologists but their inability to provide follow-up letters in a timely manner. This has now happened at two hospitals. On the first occasion the lack of the letter caused my reversal operation to be postponed. It all worked out fine in the end but I found not being able to persuade them of the urgency of the situation was very frustrating.

Maybe haematology is one of those specialities that is just “vague” because blood disorders are “vague”. I still do not have a definitive answer as to why my platelet count is so low. There have been lots of theories but no conclusive proof, despite tests and full blood counts. We’ve currently left it that I don’t seem to be affected by the low platelets so we don’t need to do any further investigation. I’m thinking that maybe this issue needs escalating.

Innocent Bystander – an unusual phrase to hear in a clinical setting. At the pre-op meeting the surgeon said that when he opened me up he was hoping to find that my colon was an “innocent bystander” ie. the colon was unaffected by the fistulas and adhesions which were present in the small intestine. The flexible sigmoidoscopy seemed to suggest he might be right but once the operation started……

Junior Doctors – the clue is in the name. It’s fascinating to observe the different ways they interact with the patients and how some are very relaxed with an excellent bedside manner and others seem to have had a humour bypass. Maybe it’s a cultural thing. I find myself, mentally, splitting them into two groups – those who should go on to pursue a research career and those who I’d be happy to be treated by.

Knowledge – since my diagnosis over thirty years ago the ability of the patient to gain knowledge of their condition(s) has grown immeasurably. This falls into 2 categories.

Firstly – generic information on Crohn’s, treatments, etc. If anything there is an overload of information available on the internet and a skill I would very much like to develop is being able to quickly sift out the good stuff.

Secondly – knowledge of your own personal medical records. In the UK, for a maximum cost of £50.00, you can request a copy of your medical records from your GP or the hospital(s) where you’ve been treated. I have found this has greatly improved my understanding of how my Crohn’s has progressed.


Loperamide
– or Imodium as it is better known. I first took Imodium back in 1979 to try and control the big D and after 2 weeks ended up in hospital with a perforated bowel. The pharmacist who had dispensed the prescription for one month’s worth of capsules had made a remark that 4 weeks was a long time to be on them. For many years I blamed the Imodium for ending up in hospital.

Fast forward to 2010. After the ileostomy my digestive system would not regulate itself and I was in danger of not being allowed home. The surgeon put me on Loperamide, up to 12 capsules a day, as required. I asked him if it was OK to take it long term and he said yes. Since then I’ve been on 2 tablets a day so my original theory from 1979 has had to be revised. The perforated bowel was the Crohn’s.

Metronidazole – is an anti-infection drug and has been found to be beneficial after surgery. I was put on it for 3 months after my reversal. For me there was one major side effect – my taste buds were shot. It certainly worked on the anti-infection front but I couldn’t wait to get off of it and to be able to taste food properly again.

Naso-gastric Tube – the bit that feeds the aforementioned bile bag. I can put up with most things in hospital but having a tube up your nose, down your throat and into your stomach has to rank pretty high on my “barely acceptable” scale. Probably the only thing higher on the list is nausea and since the tube was there to relieve the nausea it really was JUST the lesser of two evils.

Orabase – gloopy polyfilla for stomas. My stoma had started to become uncomfortable, or rather the area under the backing plate on the pouch was painful. From above all looked OK and I didn’t think to have a look in the mirror to get an all round view. What did make me sit up and take notice was the pouch filling with blood one evening. First thought – internal bleeding. Second thought – ring for ambulance.

Eventually it was found that there was an abscess immediately below the stoma which had burst but had bled into the pouch. I was patched up and sent home with instructions to see the stoma nurse the next day.

She was completely unphased by the situation (but then stoma nurses are always unphased or they wouldn’t do the job they do). I jokingly said to her that what we needed was some polyfilla to fill in the depression caused by the abscess and she produced a tube of Orabase. Problem solved and it never returned.

Pharmacy – the final frontier. The hurdle between hospital and going home. The one thing that stops you leaving at the time you planned s you are told by the Ward Sister that “you just have to wait for pharmacy to deliver your tablets and then you can go.” I have waited 4 hours on one occasion and there is nothing that can be done to speed them up. Guaranteed to bring unnecessary stress.

For inpatients there is a way around the situation. Make friends with the pharmacist on their daily ward round and once you know when you are due to be leaving hospital ask them if they can have your tablets ready and locked in your bedside cabinet ready for discharge. I’ve tried this twice, and it works.

Primary Sclerosing Cholangitis (PSC) – a mouthful to say; an earful to hear; and a brainful to comprehend. I had been sitting in one of our local hospital beds for a few days, undergoing various tests and wondering what new complaint had caused the esophageal varices to be there and then burst.

It was my old consultant (the one who had treated me before I chose to move my care to St.Thomas’ Hospital), doing his ward round, who first mentioned Primary Sclerosing Cholangitis and then liver transplant in the same breath. There was no way I could take it all in so a little later I called over one of the junior doctors and asked her what the long named disease was so that I could look it up on the internet. She told me the name but suggested I might want to refrain from looking it up at present. That was reassuring!


Questions – I’ve learned never to be afraid to ask questions of nurses, doctors, consultants, radiographers etc. Take the opportunity to build your knowledge of your condition.

Reversal – rejoining the two ends of the bowel that formed a stoma, tucking it all back into the abdomen and sewing it neatly up.

Living with a stoma was less fraught than I imagined but I always knew that there was a good chance of the whole procedure being reversed 6 months down the line. I think this made the whole situation easier to deal with and I’m not sure how I would cope with a permanent stoma.

Rutgeert’s Score – this is “an endoscopic scoring system for postoperative disease recurrence in Crohn’s disease”. Yet another new term which appeared on the endoscopy report from the first colonoscopy after my reversal. I was given a score of i0 which is the best score to get and shows no lesions in the distal ileum. I also found the following reported on the Medscape website :


“Rutgeerts score provides prognostic information: 80–85% of patients with a score of i-0 or i-1 will be asymptomatic 3 years after surgery compared with fewer than 10% of those with a score of i-3 or i-4. Among those with a score of i-0 or i-1, the chance of clinical recurrence at 3 years is less than 5%, whereas endoscopic scores of i-2, i-3 and i-4 correlate with 3-year clinical recurrence rates of 15, 40 and 90%, respectively.”
   My three years were up in June 2014.

SAL – Surgical Admissions Lounge – I always thought that the night before your operation you were taken onto the Ward that you would be recovering in and they prepared you for surgery. Maybe a reversal is not considered major surgery or maybe the pressure on beds is too great but I was surprised to be given instructions to report to the SAL on the morning of the op.

It was all very “matter of fact” and probably contributed to my remaining calm throughout the wait to be called.

SeHCAT – or to give it is full name is 23-Seleno-25-Homo-tauro-Cholic Acid Test, which you probably realise is a taurine-conjugated bile acid analog. It tests for BAM and is one of the simplest from a patient’s point of view. You swallow a radioactive pill then wait an hour and get x-rayed. Repeat the x-ray one week later and compare the two levels. The difference shows how much has been reabsorbed and therefore how much has passed out of the system or has been “malabsorbed”.

St.Thomas’ Hospital – one of the leading London hospitals. Situated on the South Bank of the Thames, adjacent to Westminster Bridge and immediately opposite The Houses of Parliament. The colorectal ward is on the 11th floor and the view is truly spectacular. It must help with your recovery as there is always something to see and take your mind off of your current situation.

St.Thomas' Colorectal Ward
St.Thomas’ Colorectal Ward on the 11th Floor

I didn’t expect to end up in St.Thomas’ but my local hospital said that they simply didn’t have the recovery facilities that would be needed after such a major piece of surgery. I’m so glad that they referred me. The inconvenience of getting up to London was far outweighed by the excellent facilities that they have there.

Stoma – from the Greek for mouth and means an opening, either natural or surgically created. Operations involving the creation of an opening are suffixed -ostomy; the prefix describes where the opening is. My 2010 operation was an ileostomy ie. opening formed in the final section of the small intestine. I actually had two stomas – the one from the end of the small intestine and the end of the temporarily redundant large intestine.

(To visualise the next bit it will help if you’re old enough to remember “Spitting Image” on ITV and their puppet of Mick Jagger)

The use of a word meaning “mouth” to describe the opening seemed rather apt as I suffered a prolapse of the lower stoma and as a result it looked like Mick Jagger was trying to escape from my abdomen. A sort of “Alien” moment.

Transjugular Biopsy – the harder way to take a biopsy from the liver. As the name implies the biopsy needle is passed into the jugular vein in the neck and then travels down until it reaches the liver where the biopsy sample is taken. Right up until the last minute it looked like they would choose this route as my low platelet count meant there was a high risk of bleeding and by going the internal route any bleeding would be back into the vein.

On the day of the procedure the doctors decided they could carry out a conventional “plug biopsy” where the needle passes straight through the skin into the liver. All my concerns and mental preparation for the more tricky procedure were in vain or rather not in vein.


Thrombocytopenia
– the long name for low platelet count. There are several theories as to why my platelet count is so low. These range from long term use of Azathioprine; to an enlarged spleen; to “you’ve got bigger than normal platelets so you don’t need as many”; to the “it’s all too difficult to be certain” approach.

Upper GI Endoscopy – sticking a camera where most of the crap comes out of ie. through the mouth. I really don’t like this procedure. I don’t like the anaesthetic spray they use to numb the back of the throat (it tastes of burnt bananas) and I don’t like the gag that goes between your teeth to guide the camera.

Just once I had it done without full sedation. Never again. Nowadays I always ask to be put completely under, even though the recovery time is a couple of hours longer.

Varices – varicose veins, but not just any varicose veins. Ones that specifically develop in the linings of the esophagus and upper stomach.

How did mine get there? The explanation is too long for this post but the way I found I had them was fairly unpleasant and involved bringing up a large amount of congealed blood (which resembled redcurrant jelly) and then being rushed to hospital once the initial shock of the situation had passed and I had managed to call out for help.

I Googled varices and banding, and immediately wished I hadn’t. The first page I read said that 70% of those who have a variceal bleed will have it happen again and for a third of those it will be fatal. If I’ve got the maths right that’s 70% x 33% = 23%, so for almost a quarter of patients suffering variceal bleeding it will be fatal. I think you can see why Google and all that information now readily available on the web is a bit of a double edged sword.

Ward Round – the chance for the lead consultant to have a go at playing Sir Lancelot Spratt (character from the British classic film – “Doctor at Large” – it’s on YouTube – see below). They sweep into the ward surrounded by a gaggle of junior doctors and students. The bigger the group the better the opportunity to “shine”.

I find ward rounds very informative. You can usually learn a few things that you either haven’t asked or nobody has thought it necessary to tell you. It’s also interesting to compare the approaches of the different consultants and their explanations as to what is wrong with you, what they’ve done to you and what they have planned for you.

I’m far too old and crabby to be intimidated by the assembled crowd of eager, and not so eager, faces so I always make sure that I provide a foil to the consultant’s leading role.

Sometimes you really can’t wait for the round to begin. This has usually been preceded by a test for which you desperately want to know the results of or someone has said the magic words “You can go home when the consultant is happy with you”.

The worst thing you can do is go off for a shower only to find that when you return to your bed the Consultant, and attendant gaggle, has already passed though and will not be back until the next day. To avoid this happening you can either shower very quickly, being careful not to fall over, but it’s probably best to stay put in the ward until you’ve been seen.

I’ve used this clip elsewhere but every time I see it there’s a smile on my face.

X-Ray – bit TOO obvious. What about……

Xylocaine Spray – the taste of burnt bananas in an easy to administer spray. If you’ve had an upper GI endoscopy you’ll recognise this taste. The spray deadens the back of the throat so that you don’t feel the camera passing through. I’m finding that just thinking about the spray, and the mouth gag that follows shortly afterwards, is making me feel sick so that’s enough for now….

Y and Z – no interesting terms come to mind for these letters at present. Maybe title of this post should be changed to “The A to X of My Crohn’s ‘Journey'”