Category Archives: crohn’s complications

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 trest 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

The Aza Conundrum

For nine years between (1999 to 2008), taking Azathioprine (Imuran) in varying doses between 150mg to 200mg/day successfully kept surgery at bay. Any Crohn’s flare-ups were dealt with by short courses of steroids. Then a series of routine blood tests showed that my platelets were dropping and it was concluded that Azathioprine was the most likely cause. I stopped taking it and within 2 years was undergoing major surgery.
I drew a graph to try and spot any correalation between the drug dose and the platelet count. I was expecting to see the count bounce back once I stopped taking Azathioprine and it did so the first time but when I started/stopped for the second time the platelets remained low. I’m guessing at that point the bone marrow was already damages. The only way to investigate further was to have a bone marrow biopsy.


In 2012 I went to see a haematologist and she explained some possible causes of a low platelet count :

increased destruction – the body is producing sufficient but something is destroying a number of them, possibly drug induced

decreased production – the body isn’t producing the right number in the first place which could be down to bone marrow failure.

We also discussed another factor – the implication of my enlarged spleen. Enlarged spleens can hold increased numbers of platelets and therefore the number released into the bloodstream is lower hence the lower count.

I had the bone marrow biopsy and afterwards received an email saying: “your bone marrow is being discussed with the histopathologist and we will write to you with the results. We will see you in clinic later in the year.” (I had to look up histopathologist – someone who carries out microscopic examination of tissue in order to study the manifestations of disease.)

I replied asking for an indication of what they had found. The response was that it would be easier to discuss the findings in clinic.
What did that mean? Nothing to worry about, it can wait, or it’s serious and we want to tell you face to face? Time for another short email along the lines “…I wonder if you could at least put my mind at rest that you haven’t found anything too serious….”

Within a few minutes this came back :
“We have reviewed your bone marrow in our multi-disciplinary meeting and there is nothing sinister to report. The findings suggest that your marrow is underproducing platelets rather than it being an immune cause that we had presumed secondary to your longstanding history of Crohn’s. This may be due to previous azathioprine use. We can discuss this in person and in more detail at your next appointment. In the meantime – I hope this reassures you.”

The appointment duly arrived. The haematologist started our conversation with: “Yours is not a simple case…..”. She had printed out the biopsy report that had been discussed at their MDM and the initial conclusion was that they were “in keeping with early/low myelodysplastic syndrome, histologically suggesting MDS-RCMD.” She knew that I would have looked this up on the internet and would have spotted the potential links with leukemia. That’s why the report hadn’t been emailed to me. [If I had Googled MDS I would have found the following – “The disease course is highly variable, from indolent to aggressive with swift progression to acute myeloid leukaemia (AML) in 30% of cases.” I think she was right to want to discuss it in person.]

She was not completely happy with this MDS conclusion because a bone marrow biopsy looks at two substances – the marrow itself and the aspirate (fluid). When the procedure was carried out the doctor was unable to obtain good aspirate slides as the blood in the samples kept clotting. After several attempts, but with little success, they had decided to concentrate on obtaining a good bone marrow core.

She described it as “like having a three piece jigsaw from which two of the pieces are missing.” At the next MDM they had discussed the results again and decided that, in my case, it was unlikely to be MDS but would recommend a further biopsy to get useable aspirate samples. “How would you feel about this?” I replied that I really wasn’t fussed. If it would help narrow down the diagnosis then the sooner the better. Next time they would use heparin, a blood thinner, with the sample needle as it should prevent the blood from clotting.

If the diagnosis wasn’t MDS then why the low platelets? The most likely cause was a combination of long-term Crohn’s and taking azathioprine. The biopsy had shown that the marrow was under-producing platelets rather than being over active and eating them up. I had been unaware that there was a potential link between Crohn’s and bone marrow.

The MDM had then gone on to discuss what the implications for treatment would be if it was/was not MDS. In either case the preferred course for treatment, at this stage, would be “do nothing” unless I was to have any procedures that could cause bleeding or that required surgery. A supply of platelets should be made available if either of these were needed. The difference in approaches would be in the monitoring regimes and we would discuss this further after the next biopsy results were available.

Back to reception to book up another biopsy and a three-month follow-up appointment.

In the meantime I had a routine gastroenterology appointment and I mentioned the need for a second bone marrow biopsy. Now you would think that a doctor who doesn’t bat an eyelid when sticking a camera up a patient would be pretty much hardened to all medical procedures, but the mere mention of the bone marrow biopsy was enough to make him squirm. He asked me if I was OK having the biopsy as it was the one test he really wouldn’t want to undergo himself! Strangely enough he wasn’t the first person to express that emotion.

A couple of weeks after the second biopsy I was back to see Haematology. When I went in for the pre-appointment blood test the phlebotomist asked me if I knew why she was also taking an “histological” sample. Since I didn’t know what “histological” meant I was of little help. (Of course I know now! It’s the anatomical study of the microscopic structure of animal and plant tissues).

The haematologist explained that one of the biopsy samples, which should have gone for histological testing, had either been mislaid or mislabelled so did not make it. This is why she had rung me a few weeks back to explain the situation. I’d forgotten about this. She had, however, looked at the other slides from that second biopsy and these were fine.

The missing sample had been discussed with the chief histologist and he suggested doing a specific type of blood test which had proved to be 60% effective in spotting problems, if there were any. The results would be available in a week’s time. The alternative was to have a third bone marrow biopsy but they didn’t want to put me through that again. I suppose I could have made a fuss about the missing slide but I couldn’t see what good it would do.

CURRENT SITUATION
When I saw the haematologist in February 2015 she described my bone marrow as being “a four cylinder engine running on only three” and therefore not delivering the right quantities of platelets.
What is the long-term prognosis for the thrombocytopenia? It should not affect the other issues I have – Crohn’s, potential PSC, PVT, but I must avoid the use of azathioprine in the future. It’s important not to get hung up on the numbers as I am asymptomatic and do not bleed profusely if I cut myself.

What could have caused the low platelets? There are no signs of marrow abnormalities that could point to a more sinister conclusion (leukaemia), therefore the cause is most likely to be drug-induced long-term use of azathioprine. The official description was “asympomatic thrombocytopenia. Therapy related secondary dysplasia on bone marrow morphology – most likely due to Azathioprine”.

Do I need treatment? No, but must look out for any signs of starting to bleed more easily. Monitoring? Six-monthly blood tests and outpatient appointments (which subsequently became annual and then dischargeded).

WHAT NEXT?
A couple of new issues have arisen – borderline thyroid level + possibility of cholecystectomy – so it seemed like a good idea to book another appointment with Haematology to discuss further. Watch this space

Should It Stay or Should It Go?

At the end of April I recorded a visit to London to see my gastro consultant (see post “50 Shades of Grey”). We discussed the “blip” last February  when I turned yellow. The keywords being – local A&E, jaundice, gallstones. There was the added complication that my local hospital was taking care of this issue. Split responsibilities and patient records tend to slow the treatment process down.

Back in November 2016, at my annual Upper GI endoscopy, I had asked if it would be a good idea to have another Fibroscan, a specialist ultrasound scan that measures liver stiffness (cirrhosis). The last one had been in November 2012 and it would be nice to know if there had been further deterioration. It was agreed that it would be a good idea but the request form was never issued.

The need to know about worsening cirrhosis had now become more urgent. My gastro filled in the request form as I watched. A few days later the appointment came through – 4th September. That long? Four months just for a very simple 5 minute test?

Friday 7th July 2017 – East Surrey Hospital Outpatients

When the “blip” happened I had gone down to our local A&E and spent the night there being monitored. Afterwards there was a follow-up appointment with an upper GI consultant locally (see post called “Time Bomb No.2, please” – April 2017). A further ultrasound scan was ordered and he said he would be happy to see me again to discuss the results. The scan took place on 12th May, the day NHS IT systems were hit by a virus. Usually I would expect to take a copy of the report away with me but not this time. I let a month go by then asked my GP surgery if they had seen the missing report. No, but a day later they had obtained a copy and rang me to let me know. (They provide an exceptional service)

The report stated “could suggest chronic cholecystitis” (inflammation of the gallbladder). Dr. Google was divided upon this condition. Some sites declared it serious and in need of treatment straight away; others said that if the patient was asymptomatic then it could be left alone. I rang the consultant’s secretary and she organised the follow-up appointment for 7th July.

(I had been under the impression, after the first appointment, that the consultant was going to discuss the case with my “doctor” (gastro consultant at GSTT) and would make a direct referral to Kings College Hospital Liver Unit. Wrong on both counts. The “doctor” he meant was my GP and the referral would be made via the GP after the follow-up scan. Doh! I had assumed that the process was already under way.)

I asked him specifically what concerns he had that would require surgery to be carried out in a specialist liver unit. He replied that they were : liver cirrhosis, low platelets, the adhesions from previous laparatomies and a possible bleed. No arguing with that. He also said that if I had a recurrence of the jaundice or pain in a specific area then I should go to our local A&E and they would take the decision on whether to treat me or transport me to London. We left it that a letter would be sent to my GP asking him to make the necessary arrangements. I thought it might be best to discuss it with my GP rather than just let the process take its course.

In the meantime I wanted to find out if there were any other hospitals I should consider along with KCH so I posted a question on FB in the PSC and BAM support forums. A number of other units were suggested but KCH came out well and it would be easier for me to get to.  Then I was recommended a consultant who works between St.Thomas’ and KCH. This would be the best of both worlds as they would have access to all my medical notes. I now had a name and contact details for the doctor I want to be referred to.

Tuesday 19th July 2017

My GP rang  this afternoon and we agreed that he would put the referral process in motion. He was of the opinion that this could have been done hospital to hospital.

Whilst I’m feeling fit and in no pain then I’m quite happy to leave the gallbladder well alone but I want to be prepared in case it all starts to go wrong.  It should be an interesting conversation with the consultant/surgeon as to his recommended way forward, especially when we start to discuss complicating factors – the minor annoyances of PVT, PSC, Splenomagely, thrombocytopenia and BAM.  I’m sure he would be interested in the results of the Fibroscan.

(That’s quite a list of complicating factors. As I’ve mentioned before it could well be a winning hand in “chronic condition top trumps”)

 

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”

 

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.

 

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'”