Category Archives: upper GI endoscopy

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.

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