Category Archives: GSTT

Fantastic Voyage

A New One On Me

Over the years I have undergone many different tests but the one that had eluded me to date was the Capsule Endoscopy. Maybe that’s the wrong to put it. Might be better to say that “so far I hadn’t needed one”.

So what changed? The last time I saw my gastro we discussed the apparent conflict between my feeling fit and well (good QOL), clear colonoscopies & biopsies but test results suggesting the opposite – calprotectin = 1300 ; Hb = 11.0 ; gradual weightloss >15kg. We had discussed this before. He had even asked a colleague to carry out a second colonoscopy in case he had missed something. Both of them were stumped so we agreed to park it. I thought now was the time to investigate further. The only part of my digestive tract that hadn’t been seen through a lens was the small bowel between duodenum and the point where my large and small intestines had been rejoined. He agreed.

We had previously discussed using a self-propelling endoscope but a “pill cam” sounded a less daunting solution. The only concern at using a capsule was the risk of it becoming stuck at a narrowing. A radiologist would be asked to review my last MRI scan before the endoscopy was ordered.

All must have been well as I got a call from Endoscopy Appointments to agree a suitable date  for the procedure. A couple of days later the instructions arrived in the post. Very similar to having a colonoscopy but with none of the dreaded prep solution needed. The leaflet also listed the medications that would have to be put on hold. These included stopping iron tablets and Loperamide 7 days out. Iron tablets – no problem, but Loperamide – that would be the one instruction I wouldn’t be following. The thought of taking a trip to London having not taken Loperamide for 7 days was not even worth considering and would have put in jeopardy attending the Big Bowel Event at the Barbican on 16th November.

Monday 19th November 2018 – GSTT Endoscopy Department

After the glorious weather over the weekend it was a disappointment to arrive in London on a dull, rainy day.  The walk to the hospital took me past a number of foodstalls that simply reminded me that I hadn’t eaten since 8:30 the previous morning or drunk anything since 22:00.

Food Stall
One of the food stalls that have sprung up along the South Bank

I arrived at St.Thomas’ and, after a few minutes’ wait, was collected by the specialist nurse. She asked the usual questions :

“When did you last eat?” “8:30 yesterday”

“When did you stop taking iron tablets?” “7 days ago. Why is it so far in advance?” “They blacken the walls of the intestine and can give patients constipation”

I explained that I hadn’t stopped taking Loperamide as, for someone who relies on it every day, any thought of stopping for 7 days was a definite non-starter.

“What other medications are you on”  I went through the list

She outlined the procedure and I was able to ask the questions. The main one was “can the capsule be used to judge the condition of esophageal varices? If it can then should I cancel my conventional Upper GI endoscopy booked for the week before Christmas?”.  She explained that a capsule can be used to look at varices but it would be a different type to the one I would be swallowing today.

She then ran through the risks of the procedure. The main one being the capsule becoming stuck and the possible means required to extract it, the worst scenario being surgery. I signed the consent form.

There are several different makes of capsule system available which all work on similar principles. There are also different types of capsule for specific tasks. There is even one with a camera at both ends.

The more advanced ones have higher resolutions & frame rates and some communicate with the recorder unit wirelessly, without the need for sensors. St.Thomas’ use the MiroCam system which  uses an array of sensors to pick up the signal from the capsule and send it to the recorder. (It’s the same unit that the BBC used for the live endoscopy that they broadcast as part of their “Guts: The Strange and Mysterious World of the Human Stomach” in 2012.)

MiroCam receiver and sensor array

The first task was to attach the numbered sensors in the correct positions around the abdomen. I can see why wireless communication is the future. (I wouldn’t normally post a selfie of my abdomen, in the interests of good taste, but to illustrate…..)

It’s not until you see a photo of your abdomen you realise the marks that have been left by surgery, laparoscopic not keyhole

Once they were in position the nurse produced the capsule and asked me to hold it between my fingers then pass it in front of the recorder unit. A bleep showed that they were now paired. As she had already input my information into the unit the display showed my name, hospital number etc.

The capsule – measuring 25mm long x 11mm dia.

It was time to see how easy swallowing a capsule would be. The answer – very easy. At 11:40 I took one gulp of water and it was on its way. The nurse switched on the live monitoring function and we watched it enter my stomach. To save battery power she then switched it off and I didn’t have the courage to try it myself in case I ruined the whole procedure. (…and what if I had seen something that, to my eyes, looked wrong? A surefire way of inducing stress)

As the unit has a 12 hour battery life she said the unit would switch off at 23:40 and I could then remove the sensors. The recorder unit would then need to be returned to St.Thomas’. I explained I was not available the following day so we agreed that I would take it back on Wednesday. Two weeks later the results should be available.

When would I be able to eat and drink again? Coffee two hours after swallowing the camera and then a light meal after another two hours. If it had been decent weather I would have set off on a long walk around London, as light exercise helps the transit of the capsule, but I decided I would rather get home in the warm. After a short walk to College Green to see if there was a media scrum outside the Houses of Parliament (there wasn’t) it was back onto the Tube to Blackfriars and the train home.

From Platform 1 at Blackfriars there’s a good view of the City and the new buildings going up

True to the nurse’s word the unit switched itself off at precisely 12 hours from the start of the procedure and I was able to peel off the sensors with remarkably little pain. The camera is not retrieved after the procedure (although there are some types that do rely on the patient “collecting” it and sending it back to the hospital for analysis.

Wearing the receiver unit took me back to having a stoma as it was hanging in the same position as the bag and the adhesive on the sensors gave a similar sensation to the stoma backplate.

I’ll update this post once I know the results of the video analysis.

The Importance of Follow-up Letters

Follow-up letters from appointments are an important part of your health records. They should contain what was discussed with your consultant, any conclusions arrived at or changes in medication etc. By default Guy’s and St.Thomas’ write to your GP after each appointment and copy in the patient under cover of a note that states “this is primarily a communication between medical professionals” (which I think is another way of saying “you probably won’t understand all the words we use”).

Now it has to be said that not all Departments stick to the “default” and I have had a couple of occasions (both with the same department) where the lack of letters caused issues. This is where my blog posts recording the latest appointment have proved more than just an exercise in self indulgence and why I read them prior to my next hospital visit.

The first time this happened was in March 2013 when I attended a regular appointment and was greeted by a doctor I hadn’t met before. We went into one of the side rooms where my notes were open on the desk. He introduced himself and said that he had been reading the notes to familiarise himself with my case. I had been hoping to see my usual consultant as I liked continuity and had issues with the lack of follow-up letters that I needed to raise with them. Unfortunately they were unavailable for that day’s clinic.

The new doctor said that, having read my notes, it was apparent that the condition I was suffering from was rare and started to discuss my low platelets. He noted that I had last been seen in October 2012. I stopped him in his tracks and said this was a clear reason why up-to-date notes and follow-up letters were so vital. There had been two further appointments since October and the platelet issue had been “parked”. A new, far more serious, condition had arisen – PVT (Portal Vein Thrombosis). This was now the priority.

I explained that this was an important appointment for me as I was expecting to run through my risk profile and at the end of it make the decision on whether to start blood thinners. My regular consultant had said they would discuss my case with th Department’s Warfarin expert, one of the professors.

At that point I started to think that this was all going to end up badly. I needed to kick start a reaction so I asked whether the professor was in the unit that day and what I needed to do to see her. Clearly this was never going to happen but it was worth a try! The doctor said that he would see if he could speak to my original consultant.

A few minutes later he returned with another consultant. I recognised her name as my clinic letters always stated that I was under her ultimate care. Putting two and two together she must have been the next one up the food chain from the doctor I usually saw. I went back over my expectations from this consultation. She explained that she worked closely with the “Warfarin Professor” and they jointly reviewed patients.

She ran through the risk factors and having looked at my notes and results, on balance, she would not recommend Warfarin yet. As far I was concerned it was the “right” answer. If there was a low risk of clotting then I was prepared to take that risk to avoid having starting yet another medication. Decision made, no Warfarin.

A month later I was still awaiting the missing follow-up letters. Time for some further action. I sent an email to the head of department (whose address I found on their web page). I apologised for contacting her directly but explained that raising the issue in clinic was having no effect. I added: “I thought it was therefore best to go straight to the top so that you can delegate any necessary actions…….” and briefly explained what had happened at my last appointment.
I hit the send button and got a very prompt response, 20 minutes later, apologising and saying it would be looked into.

The four missing letters arrived shortly afterwards, with an apology. I checked their contents against my blog and they were accurate records of the appointments.

From the above I’d like to pass on two thoughts : 1) that keeping your own record  is important and can prevent a waste of your time and a waste of NHS resources going over old issues that are already “parked”; 2) if you are having a problem with getting follow-up letters then go to the top and ask for their help. I have found those four little words “can you help me?” have opened up many situations whilst negotiating the pathway s through the NHS.

(I’ll leave the account of the second missing letter issue for another time. Suffice to say that I could have ended up having a third bone marrow biopsy! Not something I would recommend)

Haemophilia Clinic

I have found writing a short account of my outpatient appointments has been hugely beneficial as the doctor’s follow-up letters cannot cover everything we discuss and I will certainly have forgotten it by the next appointment. (I’ve also included some photographs from the walk I took through the City of London after the clinic)

Wednesday 7th February 2018 – Guy’s Haemophilia Clinic

A fairy early start to get to Guy’s Hospital by 9:35am for a visit to the Haemophilia Clinic, even though I’m not a haemophiliac. I had first been alerted to this appointment when I received a text message, before Christmas, followed a few days later by a confirmation letter. On arrival I had my blood pressure and pulse rate taken then settled down into a comfy chair, expecting a long wait. Guy’s have adopted the same large TV screens as St.Thomas’ for alerting the patient when its their turn to see a doctor. I watched for my name to appear then I heard it being called out.

I was greeted by a doctor I hadn’t met before. After the initial pleasantries she asked “Do you know why you are here?” Tempting as it was to reply “Do any of us know why we are here? Are we the creation of some omnipotent deity or the product of thousands of years of evolution?”, I opted for “No”. Although I tempered this with “…it’s probably to do with a bleeding management plan”. Correct, and brought about because of my low platelet count.

I don’t want to sound dextraphobic but when I saw that the doctor was left handed I knew it would be a good consultation. We went through my medical history. She was under the impression that I had undergone a major Crohn’s flare in 2012 so I was able to correct her and explain that in June 2012 my esophageal varices burst. She asked how I discovered the problem. I replied “Sitting surrounded by a pool of blood”.

I had previously been told that Crohn’s patients undergoing a flare are more susceptible to blood clots but not why. She explained that when undergoing a flare the blood becomes extra “sticky” to combat the inflammation. The portal vein carries blood from the gastrointestinal tract so is a common place for a clot to form. The body compensates for the blockage by growing new veins (varices) around the clot but a back-pressure can build up which in turn causes the spleen to enlarge and, in my case, varices to grow around the gallbladder. They would be an added complication should I need to have a cholecystectomy.

This enlarged spleen stores more platelets rather than release them into the bloodstream. Combine this with the damage to my bone marrow, probably due to Azahioprine, and it explains why blood tests show my platelets as below the optimum range. Many patients with low platelets do not notice they have a problem until the platelet counts falls to single figures. My count, between 60 and 80, is perfectly respectable for surgery or dental work so there would be no need for pre-surgery bleeding plan but post-surgery I would be prescribed a blood thinner for six weeks as this is the highest risk period for developing clots.

We then covered my decision not to take Warfarin which was reached by looking at the risk factors versus my wish not to take yet more medication. She thought I had made the right decision but noted that treatment has moved on and there are now medications that are much easier to take. Fine tuning dosages to achieve an acceptable INR was no longer an issue.

Up until now the concensus of opinion was that the clot in my portal vein resulted from peritonitis caused by a perforated bowel in 1979. I’ve always struggled with this explanation as a 30 year gap between cause and effect seems, to a non-medically trained brain, implausable. She thought it more feasible that it was caused by surgery in 2010. I accept that trying to get a definitive answer will not change anything but I would like to know, purely out of curiosity. I mentioned that whilst I would not wish to take up any NHS time on answering such a question I do happen to have a 2009 CT scan. I would need to find a “friendly” radiologist who would be prepared to have a look at the images and tell me if there was any evidence of a clot in the portal vein. Something to work on.

I then remembered to ask what the Upper GI doctor had meant by “if he can tolerate it” which was written on the prescription upping my Propranolol from 80mg/day to 120mg/day in an attempt to stop my spleen growing larger. What side effects should I be looking out for?  The answer – breathlessness and generally feeling unwell. So far I was coping OK.

She said she would like to see me again in 12 months rather than completely discharge me from the clininc. My next general haematology appointment was in March so she suggested it be put back 6 months. I thanked her for an enlightening consultation. We shook hands and I headed off for London Bridge..

The Long Walk

I had planned to take a brisk walk up to Finsbury Square for a coffee but it turned out to be anything but brisk. It took a lot longer than it should have done because I kept stopping to look at all the new buildings that have sprung up since I last went that way. I’m a sucker for glass facades.

Police sniffer dog patrolling around Guildhall
The wonder of computer designed structures
More architectural details
Salter’s Hall – one of the Great 12 Livery Companies
More steel and glass

After coffee I headed for Holborn and, again, made slow progress. On to Denmark Street to browse in the few, remaining guitar shops. then down to Trafalgar Square stopping briefly at The National Portrait Gallery to use their facilities.

Trafalgar Square – National Gallery

Total distance covered = 13.4km. I would have gone further but the cold was starting to get to me.

Next appointment – Gastroenterology at Guy’s on Monday 12th Feb

Loose Ends

It’s time to try and tie up the loose ends so that I can start 2018 with a clean slate. Where to begin?

Bile Acid Malabsorption – my pet subject. A much under-discussed issue that affects those of us who have had their terminal ileum removed. Having resisted starting yet another drug I finally decided to give in and try Cholestagel (Colesevelam) to give added control of the condition. Loperamide, on its own, seemed to be struggling. Apart from the odd set back the new tablets are working well and have topped up my confidence level. I’m only taking one with breakfast and one with dinner and matching that dose with Loperamide.

Calprotectin Testing – I was in two minds whether to even bother with another test as the last few results have been very high even though I’ve been feeling fine. My consultant said that I might as well be tested so I dropped a sample into the path lab with supporting paperwork. Two weeks later I contacted him to see if the result was back. He checked my record and all it said was “sample unsuitable”. What did that mean? I contacted the path lab and eventually was told that my sample was “unsuitable” because I hadn’t put my first name on the phial! Really? I am always very careful about putting ALL the relevant information of the label and that includes full name, Hospital No. & DOB. This was their reply :
 
“The following is the outcome of our investigation, our Central Specimen Reception (CSR) team only process samples following the Sample Acceptance Policy. Section 5.1 that states “The following minimum data set must be given for ALL laboratories: The mandatory three unique identifiers are: First Name, Family Name (Surname), Date of birth.”, and “Samples that fail to meet the mandatory criteria represent a significant risk to patient safety and raise serious concerns of sample integrity”.
 
They also stated that due to the “limitations of the IT system” it was only possible to mark a sample as “unsuitable”, not provide an explanation as to the reason. What I fail to understand is – if they didn’t know who I was then how come they knew it was my sample that was “unsuitable”. I would have thought that the combination of surname, DOB and unique Hospital No. should be sufficient for the testing to proceed. Normally I would take this further but, quite frankly, I don’t think they are worth wasting my time on. In the meantime I have provided another sample and handed it in to the IBD Nurses. I wonder whether that will be tested without issues.
MRI Pancreas Report – I had requested a copy of the last MRI report (October) but was starting to wonder if it had been such a good idea. Phrases such as “there is evidence of progressive portal hypertension with splenomegaly and upper abdominal varices” do not make for good reading to the untutored eye. Something to quiz the doctor about before the endoscopy.
 
Upper GI Endoscopy – 19th December 2017 – St.Thomas’ –
“Stick a camera down the oesophagus to see what’s occurring” day had arrived. The appointment was at 13:00 so plenty of time beforehand to visit a gallery (Dali/Duchamp at the Royal Academy) and do some Christmas window shopping (Fortnum & Mason).
Dali/Duchamps at the Royal Academy
Fortnum & Mason – Food Hall

 I arrived at the hospital early and took a seat in the Endoscopy waiting area, watching the boats passing up and down the River Thames. After a while a nurse appeared and explained that they were currently running about 15 minutes late but had four rooms in operation.  Each was doing a different type of procedure, some of which were a lot quicker than others. This was the reason some patients appeared to be jumping the queue. If only other clinics would adopt the same “keep the patient informed” approach. He then called my name to do the necessary safety questionnaire and give me a hospital gown to don.

 
I put it on over my clothes and sat in the inner waiting room. Another nurse appeared and explained that the Head of Department wanted to carry out my procedure (ominous) and they were waiting for him to arrive.  After a while a registrar appeared and took me into a side room to run through the procedure, the risks involved and to get me to sign the consent form. We then discussed my current health conditions and I gave her a copy of the MRIP report. I thought it was highly likely I would need variceal banding. She responded “Oh good, I enjoy banding” . I pointed out that I’d rather not need any as I didn’t want the 4 days of “sloppy” food that would neccessarily follow.
We discussed my ever enlarging spleen and I asked her what we could do to stop me becoming one large spleen on legs. She proposed upping my beta blockers (Propranolol) to the next level . I commented that given these other medical conditions, Crohn’s was the least of my worries. She concurred and with that we went into the theatre where the team, and the “top man”, were waiting.
Usually just the thought of the xylocaine (throat numbing spray ) makes me gag but this time I was fine. I didn’t even worry about the mouthpiece that guides the endoscope. A shot of fentanyl and the next thing I knew was waking up in Recovery being told by the nurse that I didn’t need banding. Result!
 ..but there is still one large loose end – cholecystectomy. I’ll defer thinking about that until the New Year

Christmas Treat

I’m convinced that blogging is good for you. It helps get some order into your thoughts by trying to write a coherent post.

My challenge today is to link (in no particular order) : an unresolved medical test; distinguishing between the effects of long term medication and the ageing process; another meeting with the surgeon and overcoming the stomach churning effect of burnt bananas.

Last week I emailed my gastro consultant to ask if I ought to have another calprotectin test as the last one was in January. Under normal circumstances I wouldn’t even need to ask the question but there is an issue regarding this particular inflammatory marker. The last result was high (896), a continuation of an ever upward trend over the last two years. The “issue” is that there is no explanation for this trend. I am feeling well and two subsequent colonoscopies have shown no inflammation. Is there any point in having a further test if we don’t understand the result? My gastro responded that I might as well go ahead but agreed it did seem slightly illogical.

I’ll drop the calpro sample in at St.Thomas’ next Friday (10th November) when I’m off to see the Upper GI surgeon to continue our discussion on having my gallbladder removed. By then  the results from my recent MRI Pancreas scan should have been discussed at their Multi Disciplinary Meeting with a recommendation on whether to go for surgery as soon as possible or leave it until it becomes neccessary. Surgery will not be straight forward for various reasons, one of which is portal hypertension/portal vein thrombosis.

The monitoring process for this last condition consists of an annual Upper GI endoscopy(ies) to look for any esophageal varices that have grown and then obliterate them with “banding”. For the last three years the procedure has been carried out in the week before Christmas so it seemed a shame not to continue the tradition. This year’s scoping is therefore booked for Tuesday 19th December. That gives me seven weeks to try and get over my aversion to burnt bananas. Just the thought is now making me feel queasy.

(If you’ve had an endoscopy you’ll know what I’m talking about; if you haven’t then I’d better explain that the Xylocaine spray, used to numb the throat prior to introduction of the camera, tastes of burnt bananas. Feeling queasy again!)

The “banding” is complemented by medication. Omeprazole – a proton pump inhibitor – to help protect the esophageal lining by reducing stomach acid. Propranolol – a beta blocker – to reduce blood pressure.  This latter drug has a number of potential side effects including tiredness, cold hands, feeling breathless, impotence.

In an ideal world I would be totally drug free but the next best thing would be reducing down to the bare minimum. I’ve already turned down Warfarin to thin the blood and not yet stared Colesevalam for bile acid malabsorption. I would like to stop or reduce the Propranolol if at all possible.

The above raises a number of questions. If I am generally feeling OK should I even be concerned that one marker is giving an unexplained result? Should I pursue it and ask for further investigation to be done to resolve the issue or should I just accept it as one of “life’s little mysteries”? How do I tell the difference between the side effects of Propranolol and the natural ageing process. Can I reduce the dosage from 80mg/day? What new questions should I be asking the surgeon? This should become more obvious once I know what the oucome of the MDM was. Unfortunately my gastro didn’t atted the meeting so couldn’t give me a heads up.

…and finally I must use my will power to overcome the burnt banana feeling.

Next update after the meeting with the surgeon.

Gallbladder Surgery? It’s Not That Simple In Your Case

Friday 22nd September 2017 – St.Thomas’ Hospital

My second outpatient trip to London in a week and, unlike Wednesday, a beautiful clear morning without a cloud in the sky. I needed to be at St.Thomas’ by 9:00 to see a surgeon about having my gallbladder removed. It was an early start and my first waking thought was to wonder if eating a complete can of baked beans for dinner the night before had been such a good preparation for a journey on public transport. Hopefully a couple of extra Loperamide would do the trick.

It wasn’t until I parked my car near the station that I remembered where my mobile ‘phone was – on the dining room table. Was this going to be a liberating or frustrating experience? How was I going to let my wife know what the surgeon had said? How was I going to let my brunch companion know where and when we should meet? (At least I had my camera with me).

Having spent the train journey pondering this dilemma I arrived at St.Thomas’ outpatients’ department without having reviewed my list of questions or the copies of the ultrasound scans and follow-up letters I took with me. After a few minutes my name appeared on the laser display board and I made my way to the room indicated.

St.Thomas’ Hospital – opposite the Houses of Parliament

I had been expecting to meet the surgeon himself but was met by his registrar. I explained to her that I really wanted to see the surgeon and she said she would ensure I could spend a few minutes with him before I left. She started to go through my medical history. To speed up the process I produced a copy of the diagram I had drawn showing the key points in 40 years of Crohn’s and its companions. She was very impressed and no doubt I started beaming like a Cheshire cat. That soon stopped with the next set of questions.

40 Years of Medical History – on a page

I thought I was there to discuss whether surgery was a good idea, or not, and the possible complications. She was clearly running through the standard pre-operative assessment checklist – “Are you mobile? Can you wash and dress yourself? Can you manage household chores on your own?” I answered “Yes” to all the above but of course the answer to the last one was “No, I can’t. That’s why I got married”  (I’m joking!). I told her that my preferred option was no surgery until absolutely necessary as it would be too disruptive at present.

We then started to discuss my medical history in detail. She examined my abdomen and complimented me on the quality of my scars. At this point it was obvious that surgery wasn’t going to be simple. She went off to see if the surgeon was available, taking the diagram with her. I think they must have then discussed its contents as about 10 minutes later they both returned and the surgeon introduced himself. He also liked my diagram and quickly ran through the key points.

He asked me to describe the circumstances that led up to me being there. I recounted the incident of violent shivering and turning yellow that occured at the end of January. He asked if I felt any pain (everyone has asked that one) and I was able to say I felt nothing at all. From that he concluded that a small gallstone must have temporarily lodged in my bile duct, long enough to cause the symptoms, and then quickly passed through before the pain started.

I went through the discussions I had had at my local hospital (East Surrey) and their suggestion that I needed to be seen by a specialist liver unit. I wondered why one of their concerns was liver cirrhosis? He replied that whenever a patient appears with esophageal varices / portal hypertension / portal vein thrombosis then it would be assumed that liver cirrhosis was the most likely cause. My latest Fibroscan result was 7.8 suggesting that cirrhosis was at a low level. I explained the hepatologist’s theory that the PVT had been caused by peritonitis following perforated bowel surgery in 1979. He thought this was very feasible.

Usually gallbladder removal is a same day operation using keyhole surgery. In my case it would be a lot more complicated. He noted my wish to delay surgery for as long as possible and was minded to agree with me. He wanted to present my case to their departmental review meeting to get other opinions. In the meantime they would arrange for me to have an MRCP scan (magnetic resonance cholangiopancreatography), a targetted MRI scan that looks at the biliary and pancreatic ducts. This would determine if any other gallstones were lodged in the bile duct. He asked me to book a further appointment for 6 weeks time so we could discuss the results and the meeting’s conclusions.

I had some final questions :

Will a cholecystectomy make my bile acid malabsorption worse? “We simply don’t know”.

Am I likely to suffer from post operative ileus (lockdown)? “Possibly”.

If we leave surgery until it is absolutely necessary what could the consequences be? “Anything from pain to having to prepare one’s relatives for bad news”.

Timescales for elective surgery? “Surgery would be carried out in the specialist Liver Unit at Kings College Hospital so the timescales would depend on their waiting list”.

I left any further surgical questions for our next meeting. His final action was to introduce me to their senior nurse co-ordinator who acted as a single point of contact for their patients. If I had any questions or concerns then I should call or email him.

….and my ‘phone predicament? Don’t bother with BT public telephone boxes – they take your money and then don’t work. When I arrived at St.Thomas’ I explained my problem to a very helpful guy behind the Patient Transport desk who allowed me to use his extension to make the necessary calls after my appointment.

….and so to brunch.

Next appointment – Friday 10th November

It’s in the blood

As a precursor to seeing a surgeon this Friday I booked an appointment with Haematology. It was only after making the booking that I read their last follow-up letter which said they had discharged me from their care. So it was with a certain amount of doubt that I approached today’s trip to London. Would I be wasting their time?

The waiting room at Guy’s was very quiet. Ominously quiet. Half a dozen patients at most. I had never seen it that deserted. The phlebotomist took blood samples and after a short wait, once the results were available, I was called in by one of the haematologists. I had not met her before and so as the consultation proceeded I needed to fill in some of the details.
I explained that since being discharged a new medical issue had arisen – a bout of jaundice. As a result I would be going to St.Thomas’ to see an upper GI surgeon to discuss having my gallbladder removed. She noted that gallbladder removal, by keyhole surgery, is a fairly simple operation on the surgery scale so I explained there were other complications and that my local hospital felt unable to cope with them, hence my referral to GSTT.
We went through the complications and their history :
Keyhole surgery unlikely to be an option due to previous adhesions/scar tissue
Portal Vein Thrombosis/portal hypertension
Low Platelets – would need to be over 80 or might need infusion
Liver cirrhosis
Co-ordinating consultants across two hospitals and four departments
As we covered each topic she used their eNote system to record her recommendations and these would be available for the surgeon to read. The follow-up letter itself would take a while to be issued.
The conclusion was that they would need to write up a plan for the surgery and would also refer me to their thrombosis unit to review my case. I came away feeling justified in requesting the appointment. I wanted to be better informed for Friday’s appointment and now felt armed with additional questions to ask. It can sometimes be a danger sounding quite well informed and having picked up some of the medical terms (the consultants version of polari) as you may get the answers back at a level higher than your actual knowledge! Never be afraid to ask if you don’t understand something.
Yes, I could have left all the above to chance but if I can help the process along, make sure the various parties are communicating and minimise risks then I’ll do whatever it takes. Roll on Friday…
I spent the rest of my time wandering along the banks of the River Thames, taking in the sights and ended up at Tate Modern.
Tower Bridge, HMS Belfast and a new berthing partner
Tate Modern – Installation by Magdelena Abakanowicz

Elective or Emergency?

I’ve often mentioned that I find blogging a great way of keeping objective about the various medical issues I encounter, hence this post which is a prelude to a meeting with a new Upper GI surgeon in London next Friday.

Why?

At the end of January I had a bout of jaundice. Whilst I turned yellow there was never any of the pain that usually accompanies it. I was in two minds whether to go to our local A&E but eventually gave in and made my way down there. To cut a long story short, a few weeks later I had a follow-up appointment with Upper GI consultant who suggested cholecystectomy (gallbladder removal). He was, however, concerned about some possible complications and for this reason recommended the surgery be carried out in a hospital with a specialist liver unit.

I exercised my patient’s right to choose which NHS hospital to be referred to and in my case the choice was simple – Kings College Hospital. I asked around and was given the name of an Upper GI surgeon who is highly recommended and has the added bonus of also working at St.Thomas’ and therefore access to my notes.

(There was a similar situation in 2009 when I found out I needed an ileostomy. The colorectal surgeon did not consider East Surrey Hospital had the facilities to cope with recovery from such a complex operation and so was sent to St.Thomas’ . I moved my outpatient care there in 2011.)

Preparing to meet the surgeon for the first time

The appointmet is set for 9:00am next Friday (22nd September). Before then I need to have a list of questions and any relevant documents. I am expecting to meet the named surgeon.

Just to complicate matters I will be seeing Haematology at Guy’s Hospital on the preceeding Wednesday. Will my medical file make it back to St.Thomas’ for Friday?

I have printed out the relevant documents from East Surrey Hospital- 2 x ultrasound reports + 2 x follow-up letters + last blood test results.

I’ve also included my “jigsaw” diagram which shows the various conditions we need to consider and the dates they were diagnosed or last tested – Crohn’s, PVT. BAM, thrombocytopenia, potential PSC + last blood test showed borderline thyroid.

What Shall We Talk About?

Reason for referral – the consultant at East Surrey was concerned that, in my case, cholecystectomy ran the risk of liver damage due to cirrhosis. He also noted my low platelet count and thought that keyhole surgery may not be feasible due to the scarring/adhesions from two previous laparotomies.

Latest test results – Fibroscan (testing for liver cirrhosis) – 2012 was 7.2; currently 7.8. Platelets – 96 (but have been as low as 56). Ultrasound scan showed one large gallstone but made up from many small ones. Weight – 78kg

Risks and Benefits of Surgery

Type of surgery – Keyhole or laparotomy? What factors will decide

Timescales – waiting time for operation; how long for surgery and recovery for either keyhole or laparotomy

Likelihood of liver damage?

WIll bile acid malabsorption become worse if gallbladder removed? (SeHCAT in 2015 showed severe BAM. I keep it under control with just Loperamide but have Colesevelam ready should it be required).

Likelihood of post-operative ileus? After two previous operations I experienced it badly?

Do I need to have reached a particular weight prior to surgery? (Prior to my ileostomy I was given 3 x Fortisip/day to reach a target weight of 85kg)

My Preferred Way Forward

To have surgery when it becomes necessary not as pre-emptive measure. “Emergency rather than elective”. Maybe that’s over dramatic and should read “Just-in-time rather than elective?” What are the risks of this approach? What signs will indicate that an operation is needed? How soon does action need to be taken once the signs appear?

The consultant at East Surrey Hospital said if I get jaundice again I should go to their A&E and then they will decide whether to  transport me to London by ambulance.

Anything Else?

Next upper GI endoscopy/variceal banding due December 2017

Bloating – have been like this since ileostomy/reversal. Any thoughts on likely cause? One or more of the 5 F’s?

…..should be an interesting meeting

Medical Records

A subject I’ve written about before but always worth revisiting. These are my experiences within three UK NHS Hospital Trusts and span 40 years.

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 results. 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 very little. 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 onwards 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 Horos which opens and views the files.. 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 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 of around 60 was normal for me. 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…..

Plan for the Worst, Hope for the Best

(In my experience this was not a typical colonoscopy. If you are about to undergo a similar procedure don’t let this post put you off. There is always the option of more sedation)

I said in a previous post that my last gastro appointment had been “interesting” but the offer of a colonoscopy “with an audience” would take that to the next level.

The last one was in July 2016 so why another one so soon?  I had also undergone an MRI scan and the results were very definitely at odds with the scope. There was also the little matter of the latest calprotectin test which showed a value of 896 (high). It was all pointing to my 6 years of drugs free remission coming to an end. I had resigned myself to restarting a drug regime and repeat surgery drawing closer.

Saturday 11th March 2017 – St.Thomas’ Hospital, Endoscopy Suite

The day of the scoping arrived. By 10:30 I was wristbanded and cannulated. I went off to change into a pair of very stylish paper boxer shorts  with a velcro flap up the back. Once I had donned  hospital and dressing gowns it was into the male waiting area until they were ready for me.

Eventually the Gastro registrar appeared and went through the procedure. He explained that he would start off and then hand over to the lead consultant when we were joined by the audience (via a video link). We agreed I would have minimal sedation as I wanted to be able to watch the images and ask questions.

He lead me down to the procedure room where I was greeted by the nurses. Whilst I was being prepped we discussed the use of azathioprine and potential bone marrow suppression. We also touched on Crohn’s and the link to portal vein thrombosis. I hadn’t realised that patients with active disease are more prone to clots such as DVT. Everything was now ready. The lead consultant came in and introduced himself.

I was asked to adopt a fetal position and, with a liberal handful of KY jelly, the scope started it long journey northwards. The image appeared on  a large screen above us. In the bottom left hand corner there was a feature I hadn’t seen before. The consultant referred to it as the “sat nav” and it showed the position of the endoscope in the colon.

It was not an easy journey as my sigmoid was tending to loop as the scope attempted to pass through. There was a lot of changing position – lying on my right side, left side or back – and lots of pressure put on my abdomen by one of the nurses pushing down. It was also a long journey as the aim was to go a short way into the small intestine past the anastomosis (the rejoin after my temporary ileostomy).

In the room next door my regular consultant was acting as chaperone to the group of international gastroenterologists who had come to St.Thomas’ to see “how we do it” in the UK. The screen on the wall flickered into action and two way communication was established. He briefly outlined my Crohn’s history and I was able to fill in some of the details. He explained the MRI issue that needed resolving and called up a copy of the report from my electronic file.

With a lot of perseverance, and gas to inflate the gut, the scope had reached the rejoin. I wonder whether the distraction of the video link caused me to relax and let the scope pass more easily. From then on the consultant gave a running commentary on what appeared on the screen. It was fascinating and informative. There was a debate between the 3 gastros as to which Rutgeerts score they would give my anastomosis. Was it i0, i1 or i2? The conclusion – i0 – no signs of ulceration.

Next they went through the MRI report and the scope was moved to the locations identified to see if any strictures were present. None found. One of the consultants remarked – “Scope 1 – MRI Scan 0”.

One thing that was apparent throughout my gut was a slight reddening (erythema). The scope was zoomed in to examine it and to look for any tell tale signs of active Crohn’s but found nothing.  The consultant decided to take a few biopsies. I had never seen this done on previous scopings so watched with a mixture of interest and cringing. What looked like a small crocodile clip appeared from the end of the scope and, under voice control, nipped into the wall of my gut. I waited for the pain but nothing, just a small trickle of blood. I suppose that is why you are given a mild sedative. He decided to take a deeper sample so the device went back into the same location and took a further bite.

By now the scope had been in for about 45 minutes and it was finally time for it to be withdrawn. Always a relief. But what about the raised calprotectin level? They would have to come up with a non-Crohn’s explanation for it. The lead consultant bade farewell and I was wheeled out to Recovery. Experience over. When else would you get a chance to listen in to 3 leading gastros discussing your case and with the evidence before your eyes?

Before leaving the unit I was given a copy of the Endoscopy Report, which I have reproduced below, and it included a possible explanation for the calprotectin result. We will have to wait for the biopsy results to be certain.

Endoscopy Report

I had started my journey (real journey so acceptable use of word) this morning expecting to be starting medications or at worst seeing surgery on the horizon. I was leaving for home with a much more positive outcome, hence the title of this post.

The only downside was the length of the procedure. Usually I suffer no side effects from a scoping but this time I ached a fair amount for the next 24 hours.

Two days later I went to see my GP to arrange for a bile acid sequestrant to be prescribed to treat BAM. I arrived expecting to take away just a prescription and ended up being referred to a surgeon, but that’s for another time…..