Tuesday, 3 December 2013

Crohn's Disease - DIARY - Upper GI Endoscopy and a Gastro Appointment

Apologies for covering old ground here. I wrote about the endoscopy experience about a year ago when I had the last one. Subconsciously this particular procedure, or rather what the results might show, had been causing me a few concerns so I was keen to get on with it. I needed to know if any new varices had grown over the last 12 months.

12th November 2013 - 9:30 am at the new Endoscopy Suite in St.Thomas' Hospital

We got to Waterloo station at nine and then had a ten minute walk, through the drizzle, to get to the hospital, passing County Hall on the right and a number of cafes on the left. The smell of breakfast wafting out of their doorways just helped to remind me that I hadn't been allowed to eat anything that morning.
The walk from Waterloo Station to St.Thomas'
We made our way up to the first floor and found the new Endoscopy Suite which opened in May this year. It looks north across the River Thames and the Houses of Parliament, a view I became used to when recovering from my last operation in June 2011.

It's always worthwhile arriving a bit early, especially if you are one of the first appointments of the day.  After a few minutes one of the nurses came to collect me. I recognised her from my previous endoscopies. She quickly ran through my medical history and medications and asked me if I wanted sedation. "Yes. Definitely". I then had to sign a consent form. She then announced that I would be first into the procedure room. Wristband attached, cannula inserted, ready to go. Another nurse appeared to see if I was ready for the doctor. I said goodbye to my wife who was told I should be ready for "collection" in two hours time.

(Handy tip - if you've got hairy arms it might be worthwhile shaving them in preparation for cannula insertion otherwise it hurts a LOT when the plaster gets removed. Far more painful than having the cannula inserted.)

I forgot to shave my arm
Immediately the doctor appeared, asked me if I was aware of what the procedure involved, explained that the risk of something going wrong was 1 in 10,000 and got me to sign another consent form. A few seconds later I was shown into the procedure room at which point I was sad enough to ask if I might take a picture of the equipment for this blog.

The endoscope and it's support equipment
It was then onto the bed and an oxygen supply inserted into my nostrils. I don't know what it is about the oxygen but I really find it unpleasant. I suppose it reminds of other times when I've really needed to be connected up, not just as a precaution.

The doctor asked me if I had any questions. I replied that I had one request - that the gag/camera guide which goes between your teeth would be put in after I had had the sedative introduced. Of all the tests I have been through over the years the bit I dislike the most is the gag.

Next I was given a few squirts of xylocaine spray to the back of the throat. It's a local anesthetic that tastes of burnt bananas and comes a close second to the gag in my list of unpleasant procedure experiences. Just thinking about it now is making my stomach turn.

The next thing I remember was waking up in Recovery with a nurse asking me how I felt and telling me the good news that I didn't need any banding. This was doubly good news as it meant I could have a coffee and biscuits straight away.

She gave me a copy of the Endoscopy Report to read. Three short varices had been found but they did not warrant any banding. Unfortunately the report had no pictures but did say that I didn't need a follow-up camera job for 12 months.

Monday 2nd December 2013 - Gastroenterology at Guy's Hospital

First task - produce the list of questions to discuss. I've changed my mind about keeping the list on my 'phone, much better to print out a copy, then you can write the responses on it. I've written this down whilst it is still fresh in my mind. Apologies for it being a bit wordy. Eventually I will get to editing it down to the key points.

Arrived early and weighed in - 3kg lighter than the last visit - the diet is starting to work. Asked the nurse to put a label on my notes that I wanted to see my usual doctor. This approach has its pros and cons. On the plus side you get the continuity of seeing the same doctor each time. The down side is you are likely to have to wait longer before you are seen. That's exactly what happened. Patients who had no preference as to which doctor they saw were waiting 5 or 10 minutes whereas for me it was closer to an hour but it was my choice and I knew the consequences.

Eventually my doctor appeared and he showed me into the consulting room. I jumped straight into the list. Number one burning question :

1) Calprotectin test results? He called my file up on screen. Result - 59 - top end of normal, but it is normal, and suggests that the Crohn's is still inactive. I wasn't expecting that as it seemed it might be starting up again. He mentioned a recent study which had correlated calprotectin results with subsequent colonoscopy observations. The calprotectin had been shown to accurately predict what a colonoscopy then showed.

2) Alternative to Azathioprine? The recent bone marrow biopsy results appeared to show that my low platelet problem was a result of Crohn's + long term Azathioprine. Was there an alternative drug when the time came? Yes, plenty of other drugs ranging from Methotrexate to the biologics such as Remicade (Infliximab). I commented that I had tried Remicade in the past but it didn't seem to work for me. He noted that the circumstances were a lot different now that I had had the operation in October 2010.

I asked if the plan would be to start medication to maintain remission or to continue without until I noticed the Crohn's starting up again. He replied his aim was to monitor for the "signs" of Crohn's not the "symptoms" ie. identifying that the Crohn's was becoming active and treating it before the symptoms appeared. Sounds like a good approach. The monitoring would comprise of 6 monthly calprotectin tests and backed up by colonoscopies or capsule endoscopies as required.

3) Bone Marrow Biopsy. I would be back at Guy's the following Monday for another bone marrow biopsy to redo the aspirate slides. He was unaware of this and looked at my file again. "Ah! That's why. I haven't got a copy of the follow-up letter from your last haematology appointment." Now there's a surprise. I explained that, a few months back, I had had to email to the head of that department to get four previous follow-up letters produced.

He asked me if I was OK about having another biopsy as it was the one test he really wouldn't want to undergo himself! Fuuny, that's been the reaction of most people who've heard I'm having one. Once the local anaesthetic has been injected you don't feel much else.

 4) Anastomosis pain. When we've discussed this before he concluded it was purely mechanical ie. given the amount of surgery carried out there could well be some adhesions or scaring formed. He examined my abdomen and could feel a small amount of scar tissue. Nothing to worry about but he gave me the option of an MRI scan if it would put my mind at rest. I had already said that I've got to the point of being thoroughly fed up with endless appointments so we agreed that the decision should be put off until the results of the next calprotectin test in six months time.

5) BM. Not something I particularly like discussing so we'll leave the detail in the consulting room. He did however say that after the surgery I had had he wouldn't expect my digestive system to behave normally. I'm taking 2 capsules of Loperamide per day and then sometimes an extra one if I'm going out somewhere. He felt this was the right approach/quantity and mentioned that there are some alternative drugs that I might want to try. (Unfortunately I can't remember any of the names).

6) Upper GI endoscopy. The scope showed 3 small varices but not large enough to need banding. Next endoscopy set for twelve months. He couldn't remember if I was still under the care of the liver specialist. I replied that I had been discharged after my last appointment as the suspected PSC was in its early stages. I asked how that condition should be monitored? Regular blood tests that could coincide with the Calprotectin tests.

7) Low FODMAP diet. I have started following this diet, in particular avoiding the likes of onions/onion powder, garlic/garlic powder and apples. It seemed to be helping by reducing bloating etc. I was toying with the idea of trying to go Gluten free and/or Lactose free. He stressed it is not necessary to go overboard with this diet. You can choose which parts to follow. It is a tool to improve your quality of life, not something that affects the Crohn's itself. If I wanted to go out for a curry one night and ignore the diet then fine, do so. It wouldn't have a lasting affect but just be aware that you might feel uncomfortable afterwards.

8) Exercise regime. Mentioned this in passing. He was happy to see planned weight loss, it was the unplanned variety that worried him with Crohn's.

9) Hearing Loss. A bit of a long shot but I have noticed recently that my hearing is impaired, enough to have a hearing test done last week. The test showed that certain frequencies are affected. One of the questions the audiologist asked was do I have low blood pressure. Because of the PVT/PSC I now take Propranolol to reduce my blood pressure so I wondered if there might be a connection.

And that was it. Another appointment out of the way. Before leaving I picked up "on hold" request forms for the Calprotectin and blood tests. It's up to me to have them done in time for seeing him again in the summer. Pretty encouraging really, just need to get rid of the join pain and prepare for the final test of 2013 - 9th December - Guy's Hospital - Bone Marrow Biopsy II - the Sequel

Tuesday, 5 November 2013

OPINION - Cure for Crohn's?

This wasn't my intended next post. I was going to delve into an Upper GI endoscopy but my wife happened to mention that the Channel 4 Series "Health Freaks" would be featuring a lady who claimed to have "cured" her Crohn's Disease using tree bark. I had already missed it in real time but could still catch it on C4 + 1. There were a few comments appearing from the #IBD community on Twitter. I had to watch....
Over the years there have been many newspaper articles along the lines of "Miracle Cure for Bowel Disease". The Daily Nazi, sorry Mail, has a penchant for them. As a sufferer from Crohn's for 35+ years I'm sceptical and that is, understandably, the attitude I started out with when watching the C4 programme. I won't describe the format - have a look at the "Health Freaks" page on the Channel 4 website.

I watched the programme again on the Channel 4-on-demand service just to make sure I remembered everything correctly.

The main presenter introduced the film by briefly describing the effects of Crohn's Disease, the fact it is currently considered incurable and that there are 115,000 sufferers in the UK (more of that later). There then followed a short film showing the "cured" woman wandering around some woodland with a saw in hand, cutting into the bark of various trees. She went on to explain that she had had Crohn's disease for 50 years; that conventional medication hadn't kept it in control; that it caused her a lot of lower abdominal pain; that she had started looking for alternatives and tried various tree barks, with varying success. She stated that her last endoscopy had shown "her stomach was in pristine condition".

OK. I remained sceptical. It was now time to put her claim to the panel of GP's to see if they thought it worth pursuing with further research. After a brief discussion, in which it was reiterated that Crohn's is considered to be incurable, they decided it didn't merit more research. Right decision! What did annoy me was the comment to the woman from one of the GP's (Dr.Ellie Cannon - resident GP for The Mail on Sunday - @Dr.Ellie) who said "I can see you are a very empowered person and I believe that it is this whole package that has CURED your Crohn's". Whoa. Why say that! I can just imagine someone who has heard of the disease, but didn't know a lot about it, coming away with the impression that if you are "very empowered" you can "cure Crohn's" which could easily morph into "it's all in the mind". Just what we need in the fight for IBD Awareness and greater appreciation of the problems caused by this "invisible" disease.
Old News

I needed to do a bit of my own research so Googled "Cure for Crohn's Disease". This suggested a sub-search of "Cure for Crohn's Disease tree bark" so clearly others had been doing a similar search. It was very enlightening. This story had been around for a few weeks and not just as a result of the Channel 4 show.

A website - NaturalNews.com - had an article, dated 24th September 2013, headlined "Grandmother cures Crohn's disease by eating tree bark". It takes the stance that bark as a treatment for inflammation is well known and that the grandmother could have saved herself a lot of trial and error if she had read up about it. But that wasn't the bit that stopped me in my tracks. It was this paragraph, which I've quoted verbatim :

"While Ms. Barnes's story is inspiring, it does contain a disheartening epilogue: She refuses to openly name the species of tree whose bark produced the best effects, preferring instead to capitalize on her findings by selling the recipe to a large pharmaceutical firm."

Definitely needs some further reading.

The Daily Nazi (Daily Mail) had also heard about the story. Here's some extracts :

"The inflammation caused by Chron's (sic) destroys the tissue of the bowel so badly that surgeons must cut out sections of the intestine.

She told The Sun: 'Then I read of bark’s medicinal properties and felt it was worth a go. She began cutting bark off trees in a park, then dried and ground it up at home......

A letter from her consultant gastroenterologist in August said: 'Recent investigations have shown no evidence of active disease. She now apparently plans to sell her secret bark recipe to a pharmaceutical giant."

No further enlightenment but the next reference was to the BBC website and that provided some very relevant information. Here's an extract -

"Marlene Barnes, 72, of Cardiff, had part of her colon and intestine removed due to the illness and began grinding up bark for a remedy 16 years ago. Her consultant told her: "Recent investigations have shown no evidence of active disease."

Very interesting. "Had part of her colon and intestine removed"? Don't remember that being mentioned on "Health Freaks". "Recent investigations have shown no evidence of active disease."? That equals "cure" does it?

As with any television programme you don't know how much falls prey to time constraints and the editing. The surgery, I believe, could be very relevant to this whole story. I don't know all the facts so won't make any further comment. I'll leave you to come to your own conclusions.

Good News Then...

Using the Daily Mail's resident doctor's criteria I am "cured" of Crohn's. Yes, me personally. On what basis? Well - in October 2010 I had my terminal ileum removed, about 14cm including the strictured bit. Two subsequent colonoscopies have shown no signs of inflammation or active disease (Rutgeert's Score of i0) but I would never say cured. I know that Crohn's could start to attack another area at anytime. I'll go with temporary remission".

(Subsequently I have been diagnosed with severe Bile Acid Malabsorption (BAM) as a result of losing my terminal ileum. For some reason it is not a subject that seems to be discussed very often. Untreated it's symptoms are very similar to Crohn's - the frequent bathroom dashes. Even if a cure is found for the Crohn's itself for those of us who have had surgery may still have to battle with BAM).

The Numbers Game

Doing the research into this story I came across the following statistics :

The BBC website said "The inflammatory bowel condition, which affects 60,000 Britons, causes symptoms including pain, diarrhoea, vomiting, weight loss and fatigue"

An article in the Jewish Chronicle quoted the number as 63,000. Close enough

The BUPA website quotes "about 90,000"

...and "Health Freaks" used the number 115,000 which comes directly from NHS Choices :

"Crohn’s disease is a relatively uncommon condition. There are currently at least 115,000 people living with Crohn’s disease in the UK."

So which one is it? I would expect the NHS to have the best statistics so anyone quoting less than 115,000 is doing us Crohnies a dis-service.

Monday, 30 September 2013

DIARY - Crohn's, blood clots and low platelets

September 2013

Medically things are going OK-ish. I don't want to tempt fate by putting it any more strongly than that.  I still have a sporadic, niggly pain around the site of my anastomosis (the bit where they joined my gut back together again in June 2011). This has been ongoing for quite a while and gets worse when I've been doing a lot of physical work, worn a belt too tightly or have been on my feet for a long time. My consultant thinks it's purely mechanical and nothing to worry about.

Between now and Christmas I have four outpatient appointments and will have a chance to practice what I preach using my 8 point approach to "Managing Consultants and Appointments".

(1) Making a List
(2) Manage Your Appointments
(3) Continuity
(4) Medical History (including copies of any recent emails)
(5) Contacting your consultant between appointments
(6) Follow-up letters
(7) Manage Your Appointments 2
(8) Keep a sense of humour

(There's a separate post which goes into the detail if you are interested. It should be obvious which one it is - the clue is in its title).

Wednesday 25th September 2013 - Haematology Appointment - Guy's

 The Background

This was to have been the sign-off appointment where I got handed back to gastroenterology. The "elephant in the room" however is thrombocytopenia - the relative decrease of platelets in the blood. A normal value is anywhere between 150 and 400, I've been well below 100 (hovering around the 60 mark) for quite a while now but not exhibited any obvious adverse effects such as bleeding profusely if I cut myself. We had decided to park the issue but when I re-read my notes from the last gastro appointment, and the subsequent follow-up letter (6) , they said that my GI would not put me on a maintenance dose of Azathioprine because it may have caused the thrombocytopenia.

That meant one less route available to me should (when) I need to start drug therapy again to control the Crohn's. In my last post I mentioned that I would email my GI consultant (5) to ask if he was happy that this issue would remain unresolved. I sent the following and copied in to the haematologist :

"I have my next haematology appointment on Wednesday week. At the last one it was suggested that I could then be discharged back to your care, as we have done with hepatology. The fewer clinics I have to attend the better but I have one question for you regarding my thrombocytopenia from a Crohn's standpoint.

Because I am asymptomatic and there are many possible causes of the low platelets we have "parked" further investigation. When I saw you at the end of June, we discussed Crohn's remission and the use of Azathioprine as a maintenance drug but you said you would not want to prescribe it because of the low platelets. Will the non-resolution of the platelets preclude the use of any other potential medications that might be needed if my Crohn's starts to deteriorate? Is Azathioprine ruled out by low platelets regardless of the cause?"

Early the next morning I received a response from the haematologist :

"Having read this email - I think we do need to go ahead and finally do the bone marrow test to see if we can be  more definitive about the cause for your low platelet count as this is having an impact on your treatment options. We can discuss it when I see you on Wednesday."

The Appointment

For haematology appointments it's worth turning up half an hour early as they always take a blood sample and have the results available during your consultation. I booked in and then took a seat. Within 5 minutes I was called by the phlebotomist and had a blood sample taken. It was then back to the seating area, ready for a long wait. After another 10 minutes I heard my name being called. A doctor I hadn't seen before introduced herself and apologised for keeping me waiting even though I was being seen 15 minutes early. My usual consultant was on holiday so no point in asking "for continuity" (3) and anyway I had already decided that I would be happy to be seen by whichever doctor I was allocated.

As we entered the consulting room I showed her my list (1)(6) and explained I had a few questions to ask. She had started reading my notes but they didn't include a copy of the recent email correspondence so she was unaware that I was to have a bone marrow biopsy. Luckily I had a copy of the emails on my phone so she was able to read them for herself.

We went through the causes of low platelet counts - increased destruction ie. the body is producing sufficient platelets but something is destroying a number of them, possibly drug induced; or decreased production ie. the body isn't producing the right number in the first place and could be down to bone marrow failure. The biopsy would help to focus the investigation. (I suppose it could be a combination of both but we'll cross that bridge....).

We also discussed some other factors which I'm still struggling to understand. I have an enlarged spleen (splenomegaly) - what caused that? Enlarged spleens can hold increased numbers of platelets and therefore lower the number in circulation and the number that get counted. Then there's the blood clot in my portal vein (PVT - Portal Vein Thrombosis). Did this cause the spleen to enlarge? The doctor remarked that blood clots in this location were common in Crohn's patients and it was plausible that the clot could have been there since my emergency operation in 1979 as the liver specialist suggested. I asked why it hadn't shown up on the various x-rays and scans that I had had over the years. She replied that unless the radiologist was specifically looking in that area it would be easy to overlook. Unfortunately the x-rays up to the year 2000 are no longer available. There is a CT scan from 2009.....but this is all rather academic.

By now the results from the blood test appeared on the system - platelets 60, the lowest ever, but white cell and red cell counts normal. This suggested a platelet specific problem, not a general blood disorder.

We went though my list :

1) What involved in a bone marrow biopsy? It's carried out under local anaesthetic by introducing a needle into the hip bone (?) and taking a small sample of marrow and then using a slightly larger needle to take a small core. Will it hurt? You've got Crohn's disease and had surgery so you're used to pain. The most uncomfortable bit is injecting the local anaesthetic. Some patients don't even feel the biopsy needles being introduced.

2) Do I need to take any special precautions if I have teeth extracted? Unless your platelets fall below 50 then extraction should be OK. You might want to have a clotting gel available to stop your gums from bleeding. If your dentist is worried he might want to refer you to the specialist Dental School at Guys.

3) How regular should I be having blood tests and are there any special things to test for? Six monthly at your outpatient appointments is fine. You could ask your GP for more frequent ones. The only special test would be for clotting.

4) Is there any possible link between low platelets and diet? (A bit of a long shot this one but I due to see the dietician in a couple of weeks time). No.

Back to reception to book the biopsy and the follow-up appointment. I was offered the biopsy for the next morning. Unfortunately I wasn't going to be in London so declined. "We have a slot at 3.00pm next Wednesday, is that any good?". Excellent and the follow-up appointment was set for the week before Christmas.

The next day I got a phone call from the doctor asking me to forward a copy of the email correspondence for inclusion on my file. I told her that the biopsy was planned for one week's time and she sounded genuinely surprised it was so soon. I mentioned that the follow-up appointment wasn't until December and wondered if it should be brought forward. She assured me that once the biopsy results were available she would be in contact with their findings. Roll on the biopsy.

Wednesday 2nd October - Bone Marrow Biopsy

The procedure was planned for 3:00pm. In the morning I had told various colleagues that I wouldn't be around after lunch and explained why. Every single one of them uttered the same 3 words "that sounds painful". After you've heard it for the umpteenth time a few nagging doubts set in but I remembered what the haematologist had said last week "You've got Crohn's. You've had operations. You've dealt with pain! This will be nothing by comparison."

Guy's Hospital in the shadow of The Shard
I set off in good time, (if you've read any other posts you will know that I always do), and arrived at Guy's twenty minutes early, checked in and waited to be called. A nurse came over and gave me an identification wristband as the procedure would be carried out in the Day Hospital section. She said that I shouldn't have to wait too long.

It was around 3:30pm when the doctor appeared. Her first reaction was "have you come alone?" That sounded a bit alarming. I asked why I would need to be accompanied and she replied that most patients were nervous about the procedure and liked to have someone with them.

She showed me into a treatment room. I took my shoes off and ay on my right hand side on the bed. She explained what she was going to do, where the needles would be inserted and then did the usual risk assessment talk. There was not a lot that could go wrong as the needles go straight through the skin into the hip bone and nowhere near any vital organs. I signed the consent form and we were ready to start.

I asked how long it would take for the results to be available as my follow-up appointment was planned for mid-December. She replied that they should be available in 4 or 5 weeks and they would contact me if anything untoward showed up. I asked to be informed even if nothing showed up as I didn't want to wait until the appointment to find out.

She asked me to pull my knees up to my chest and adopt a foetal position. She felt around to find the best location for the needle and then thoroughly cleansed the area. This was followed by a series of shallow injections of local anaesthetic and was the most painful part of the whole experience but really not too bad. Certainly nothing to get hung up about. Some deeper injections were made but by now the first set of injections was working so I felt very little. A few minutes later it was time for the first sample needle to be inserted.

The slides
The aim is to get a liquid sample (aspirate) that can then be spread onto microscope slides for an initial examination within the department. She was having problems getting a good sample that wasn't contaminated with blood as it kept clotting (which goes against what you would expect from low platelets). Because I was tolerating the needle so well she took some more samples but explained that the as long as she could get a good core sample then the quality of the liquid samples wasn't important.

Time for the coring needle, which is quite a bit larger than the previous one. If you've ever seen one of those food programmes about cheese no doubt there will have been a scene where the cheesemaker inserts a tool into the cheese and pulls out a nice sample. Same principle here!

It takes a fair amount of force to push the larger needle through the outer layer of the bone. I could certainly feel it as it went deeper in. It wasn't so much pain as a dull ache that traveled into the leg. After a couple of minutes of pushing the needle into the right depth it was withdrawn and the sample released. She was very pleased with the resulting core and set about dressing the puncture wound.
Bone marrow core sample
I then had to lie on my back for 15 minutes whilst the blood clotted and sealed the wound. I was told that a nurse would come and tell me when I could go. After 20 minutes or so she came in and looked at the wound. It was fine so back on with my shoes and down to the station to catch the train home.

The procedure room
Throughout the procedure we talked about low platelet counts, possible causes, what the tests would show, the fact that my red and white cell counts were normal, my Crohn's history, empowered patients etc. It was very informative and kept me at my ease.

If you have got to have this procedure done it really is fairly painless. Once the initial local anaesthetic has been injected it's pretty much plain sailing.

24th October - "Please relax this weekend"

I had added a reminder into my calendar to email the consultant after 5 weeks and ask if there had been any news. I needn't have bothered as they were already "on my case".

On 24th October I received an email saying "your bone marrow is being discussed with the Histopathologist and Dr. xxxxx will write to you with the results. We will see you in clinic in December." Straight onto Wikipedia and I now know that a Histopathologist is someone who carries out "microscopic examination of tissue in order to study the manifestations of disease".

I replied by asking if, once the discussions had been concluded, they could email me with an indication of what they had found  I explained that I had rescheduled my appointment for the end of November so that it preceded my Gastro appointment in early December. Last Friday I received another email saying that it would be easier to discuss the findings in clinic. Whoa. Did that mean - nothing to worry about, it can wait; or it's serious and we want to tell you face to face?

I'm pretty laid back about my health nowadays. I've had enough shocks along the way to just accept whatever will be will be but I was starting to get an uneasy feeling. There was no way I would relax over the weekend knowing that the results had been assessed but I was in the dark. Time for another email "...I wonder if you could just put my mind at rest that you haven't found anything too serious otherwise I won't be able to relax this weekend!"

Within a few minutes this came back :

"Please relax this weekend. 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.......I look forward to seeing you on 20th November and we can discuss this in person and in more details then. In the meantime - I hope this reassures you."

I thanked the doctor for her prompt response. I can relax until I see her on 20th November, apart from having to go to work, commuting to London and worrying what effect the fireworks will have on our dog and ponies. (Cut to gratuitous picture of dog and ponies for light relief)

Next stop - 12th November - upper GI endoscopy to see if my esophageal varices have regrown and to band them if necessary. Obviously I'm hoping that they find nothing as you can only eat sloppy food for four days after any banding otherwise the food might dislodge them. For what happened please see the post entitled "Upper GI Endoscopy".

Haematology - 20th November 2013  Today's appointment was to go through my bone marrow biopsy results. Even though I had already had the email a couple of weeks back telling me that there was "nothing sinister to report" but it was always at the back of my mind that there might be something significant that needs discussing face-to-face.

I got to the clinic early to allow time for the obligatory blood test. With that over I settled down to wait for one of the consultants. After 15 minutes my usual doctor collected me and we went into a consulting room. She started our conversation with "Yours is not a simple case.....".

She had printed out two biopsy reports - one for the recent bone marrow procedure and the other for last year's liver biopsy (which I had not seen before - more of that later).

The bone marrow results had been discussed at the MDM (multi-disciplinary meeting) 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 net and then probably have been worried/distracted by the potential links with leukemia. That's why the report hadn't been emailed to me.

(This is a quote about MDS from patient.co.uk - "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 made the right decision to want to discuss it in person.)

She went on to say that she was not completely happy with the MDS conclusion because a bone marrow biopsy looks at two substances - the marrow itself and the aspirate, that's the bone marrow liquid. When I had the original procedure the doctor said that she was not getting good aspirate slides as the blood in the samples kept clotting. After several attempts, but with little success, she decided to concentrate on taking a good bone marrow core.

"It's like having a three piece jigsaw from which two pieces were missing." So 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 I feel about this?" I replied I really wasn't fussed, the most painful bit was the initial injection of local anaesthetic. If it would help narrow down the diagnosis then the sooner the better. She explained that this time they would use Heparin with the sample needle as this 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 was unaware that there is a potential link between Crohn's and bone marrow. (I'll do some further reading up on that one)

Using my blood results I've plotted my platelet count vs. Azathioprine dose (click to enlarge)
They 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 require 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 (9th December) and 3 month follow-up appointment.

Included with the Haematology Report was one from my Liver Biopsy - if I thought blood was complicated then reading this report is mind boggling. I haven't even tried translating it into easy-to-understand terms. Here's a sample :

"Features of cholangiopathy, with slight cholangiocyte disarray, occasional juxtaportal hepatocytes containing copper-binding protein deposits, and scattered ceroid-laden macrophages in portal tracts. Patchy mild portal-tract fibrosis with perisinusoidal extension and early spurring. Macrovesicular steatosis of hepatocytes (5% of parenchyma). Slight centrilobular sinusoidal ectasia noted. Crohn's disease with splenic vein block (clinical diagnosis), see comment. An early stage of primary sclerosing cholangitis is a possibility. Correlation with imaging-study findings appears in order. I can not suggest an aetiology for the slight sinusoidal ectasia observed." 

Next Appointment - 2nd December to see my gastro-enterologist. Will be interesting how all these strands come together.  I'll also get the result of the calprotectin test that was done recently. It will be a good pointer as to whether my Crohn's is active/inactive and consequently what the future treatment plan is likely to involve. If it is still in remission then is it better to continue without any medication for as long as possible or would it be better to start taking precautionary doses? I get the feeling that the answer won't be a simple one.

If you've looked at some of my earlier posts you may have read about the problem I have had with not getting  follow-up letters out of Haematology in a timely manner. This was brought home to me when I saw my gastro-enterologist last Monday (2nd December). He was unaware that I had seen the haematologist to discuss the results of original biopsy; that there were implications for restarting Azathioprine; that a second procedure had been arranged and all because there was no letter detailing all this on my file. (He very helpfully went on to say that a bone marrow biopsy was the one test he really wouldn't want to go through himself!).

9th December - Haematology Day Unit - Guy's Hospital

Biopsy II Day. A beautiful, sunny winter's day. Took the District Line down to Monument and then a stroll over London Bridge, underneath The Shard and on to Guy's Hospital.

The Thames from London Bridge

The Shard appears to have grown arms
I arrived in plenty of time, was wristbanded and waited for a doctor. She appeared a short while later and I was taken to a cubicle in the day ward. She went through the usual risk review and got me to sign the consent form.

Then, for the second time, the value of follow-up letters became apparent. The doctor had referred to my notes and found the latest letter on file, dated September. She was unaware of what had happened in the interim, that this was to be a second sample attempt but with no need for a marrow core this time. It's a good thing that I had taken this all in, together with the plan to use Heparin to stop the blood from clotting otherwise it would have been back to square one and a third biopsy. (Whilst this blog sometimes goes into too much detail it is proving useful when follow-up letters aren't forthcoming and I want to recall what we said at an appointment)

She went off to find the Heparin. When she returned she laid out the various bits of equipment - swabs, needles, instruments of torture, local anaesthetic etc. She got me to arrange my clothes so she could access my hipbone and to ensure any leakage missed them. I then rolled onto my left hand side and draw my knees up onto my chest.

Instruments of torture (luckily the largest one wasn't needed)
Last time it was the local anaesthetic injections that stung the most but this time they were outdone by the sample needle. I think a couple more minutes to allow the anaesthetic to work and it would have been fine. She looked at the first slides but they weren't quite as she wanted, probably due to the Heparin. She asked if it was OK to go back in with another needle to get a second sample. This time I felt nothing apart from a liquid trickling down my back. It could only be blood. Slightly unnerving. Clearly the Heparin had worked. She was now happy with the slides and showed me what they were looking for. To prove how truly sad I am I asked her if I could take a picture of a "correct" slide.

This slide was the one chosen for further examination
She cleaned up the "leakage" and put a dressing over the puncture. It was then a 15 minute wait, lying on my back, to ensure everything had started to seal itself. She warned me that it was likely to need a new dressing before I left hospital due to the action of the Heparin. After 15 minutes a nurse came and changed the dressing and I was allowed to go back to work.

Now I have to wait for the results. Can't believe it - I forgot to ask how long that process would take. Must also chase up the follow-up letter but quite frankly I've had enough of appointments and procedures for this year. I just want to chill out and try and forget about medical matters. The follow-up appointment is set for 19th February.

Wednesday 19th February - Haematology II - Guy's Hospital

The first appointment of the year and really unprepared for it. It's only two months since the last one but I've already got out of the habit. Traveling up to the London on the train in the morning I realised I hadn't even got a list of questions to ask. When I got to my office I printed off the account of my last trip to Haematology, just to jog my memory (see post - "Bone Marrow Biopsies, Follow-up and Results...well sort of"). I then re-read the post "Managing Consultants and Appointments" to make sure I put into practise what I preach. By the time I set off for Guy's Hospital I had managed to write down 7 things I needed to ask or mention on a good, old fashioned Post-It note.
List of questions for Haematology
Appointment was for 10:00am so arrived 15 minutes early for the obligatory blood test. The phlebotomist asked me if I knew why she was also taking a "histological" sample, but I didn't.

Back to the waiting area and at 10:00am my usual doctor appeared, greeted me warmly and we set off for a consulting room. She introduced me to an American medical student, who was over in the UK to see how things are done in the NHS, and checked that I was OK with someone else present during the consultation.

She explained that after the last bone marrow biopsy one of the samples, which should have gone for histological testing, had either been mislaid or mislabelled so did not make it to the histologist. This is why she had rung me a few weeks back to explain the situation. She had however looked at the other slides from the second biopsy and these were fine. She had discussed the missing sample with the chief histologist and he suggested doing a particular 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 me to put me through that again. I'm really not that fussed.

...and so to the list :

1) Long term prognosis - will not affect the other  issues I have - Crohn's, potential PSC, PVT. Must avoid use of Azathioprine in the future. Today's platelet count = 74, an increase of 18, but don't get hung up on the numbers as I am currently asymptomatic ie. I don't bleed profusely if I cut myself.

2) Cause of low platelets - no signs of any marrow abnormalities which could have pointed to a more sinister conclusion ie. leukaemia therefore cause is drug induced - long term use of Azathioprine.

3), 4) and 6) Treatment - none required but look out for any signs of starting to bleed more easily. Six monthly blood tests and outpatient appointments. A platelet count of 50 is the threshold for having minor surgery or teeth extraction so no need for special measures at present.

5) Medical Synopsis - some inaccuracies had crept into the synopsis at the top of the last follow-up letter. I wasn't sure if they were significant but we went through them one-by-one and put them right. (I had already emailed my gastro consultant a few weeks back with the correct information)

7) Follow-up Letters - this was an area where we had had issues in the past. I requested that follow-up letters were sent out as soon as possible after an appointment as the last time I saw my gastro consultant he was unaware of my bone marrow biopsy etc. She promised to improve the timing in future and would write to me as soon as the histological results were back.

I mentioned that as part of the NHS Change Day (3rd March 2014) I had pledged to give feedback to my consultants on the service they provide (whether they wanted it or not!). This was my first chance to put the pledge into action. She thanked me for my feedback.

10:20am appointment completed and on way back to work


The low platelet issue had originally been "parked" but in September 2013 I felt that we really should investigate it further so we could decide if Azathioprine would still a viable drug for treating my Crohn's and  to make sure there wasn't a  more serious underlying problem. My gastro consultant supported this and the investigation started.

Two bone marrow biopsies later and we have the answer. The low platelets are not indicative of a bone marrow abnormality but are drug induced with the likely cause being to 8+ years of Azathioprine. It is a known side effect of this drug. Azathioprine is sometimes used to maintain Crohn's remission but if I get to the point where I need to go back on medication it will not be considered as an option.

The low platelets can return to their parking bay.

...and the implications for other Azathioprine users? The above is just MY experience of taking that drug and as we all react differently to medications you should not assume you will end up in the same situation. Whilst I stopped taking it when we realised there was a potential problem it has not damaged my bone marrow sufficiently to need to take further action. The haematologist described it as like having a "four cylinder engine but only running on three". Would I have agreed to starting Azathioprine back in 1998 if I knew then what I know now? Yes. For nearly ten years it kept surgery at bay so that when the knife became inevitable I was in a much better position both financially and mentally to cope.

Monday, 20 May 2013

Managing Consultants and Appointments

"Tips for Hospital Survival" has proved to be one of the most popular posts on this site so I thought I'd have a go at writing another one dealing with an area which patients with chronic diseases have a lot to do with - consultants, outpatient appointments and procedures.

What follows is based on my experience being treated by the UK NHS as both an in-patient and an outpatient, mainly with gastroenterologists but more recently haematologists and heptologists as well. The dynamics described may be different where you are funding your healthcare privately and paying a consultant directly or via an insurance company.

If this post seems rather analytical and cold, with few emotional considerations, it is because I have found this "matter of fact" approach has made the Crohn's, other minor annoyances such as PVT, potential PSC, BAM, hospital stays and consultants, a lot easier to deal with.

I thought long and hard about how I could encapsulate my attitude in the length of a Tweet and came up with this :



For old hands at the "health game" most of this will probably seem blindingly obvious so it's aimed at newer patients, ones that become tongue tied in front of their consultant or that find appointments difficult to handle.

1)  Making Lists - Definitely in the "blindingly obvious" category. This has to be the best thing I've ever started doing. I used to go into the consulting room with the attitude "of course I'll remember all the things I want to ask". It was a male arrogance thing. I'd then arrive home and my wife would say "and what about x?" Blank stare. "Why didn't you write a list?". Another blank stare. This went on for many years (male arrogance is a long term condition) until the penny finally dropped. Nowadays I start preparing a list several days before the appointment date. (The one shown below was compiled in preparation for seeing the haematologist prior to weighing up the advantages/disadvantages of starting Warfarin).

Once you've written it out talk it through with someone close to you as they may have spotted things in your appearance or behaviour that they are concerned about but "didn't like to mention" or didn't think were significant.

Nowadays, I print out the list and make a point of having it in my hand as I enter the consulting room and after the initial pleasantries explain that there are a number of questions I want to ask and point to the list. This sets the scene for what follows i.e. don't expect to finish this consultation until we've been through it all.

It is worth noting down the answers, although these should be covered in the follow-up letter that you get sent a few days later. (Or rather SHOULD be sent -  more about that further on). One advantage of having a paper list is that if you print it, or write it out nice and legibly, and then become emotional or tongue tied you can hand it over and let the doctor work their way through it.

2)  Manage Your Appointments - This may or may not be necessary depending upon how your hospital works. I get treated by two different departments in the same hospital. One of them will make the next appointment for you there and then so that you leave the hospital with the appointment letter in your hand. The other department says they will contact you closer to the time but there is always that doubt at the back of my mind that the request will get lost somewhere in the system and by the time I realise there's a problem the appointment gets delayed.

Nowadays I set a reminder in my calendar, two months before the appointment is due, to contact the consultant's secretary just to remind them and that does the trick. Two months is the right length of time for me but it may differ in your area. For Guys and St.Thomas' (GSTT) it's usually between 3 and 6 weeks to get an appointment with a particular consultant or to book up for a procedure such as an endoscopy.

3) Continuity - Generally I like to see the same consultant each time so there is continuity in approach and it is not necessary for them to go through my whole medical history before starting the consultation. I didn't used to question it when I was seen by different registrars or junior doctors but as my health worsened I really felt it could become a matter of life or death (maybe slightly over dramatic!) that I saw the person with the most experience/expertise and who understood my case.

The best way to approach this is to tell the nurse that weighs you that you need to see a particular consultant and they can then put a note to that affect on the front of your file or make sure your notes get put in the right pile. Occasionally it doesn't work and you end up being called in by another doctor. At that point I politely explain that I'm not doubting their medical knowledge but I do need to see my usual doctor. This has always worked OK.

All the above goes out the window if I'm just having a routine, follow-up appointment where no important decisions need to be made. If that's the case I'm happy to see any of the doctors. I do actually question whether this type of  appointment has any value and would be quite happy to do it by email, Skype or even an old fashioned telephone call. The only advantage of the face-to-face contact that I can think of is the doctor being able to spot something of concern that you haven't noticed or being able to carry out a physical examination.

4) Medical History - important if you are seeing new doctors or consultants. If you've only been suffering from Crohn's, or whatever disease you've got, for a short period then it's likely that you can remember all the key dates and events that have brought you to this particular appointment.

If you've always been treated by the same hospital then your medical history should be available to any of the professionals treating you via their records system but if you've moved around between hospitals, health authorities and consultants then it is likely that there won't be one single, unified set of records.

When moving to a new consultant and/or hospital, or if you are unfortunate to have been admitted to a new hospital as an emergency, possibly unconscious, then a brief outline of your history can save a lot of time in the early stages of working out what has gone wrong or which will be the best area to start investigations.

Medical letters and related articles stored in my phone's library
For years I was always being asked when was my first Crohn's operation and what exactly the surgeon did at that time. I knew it was an emergency admission to Croydon General Hospital sometime in 1979 (suspected appendicitis) and that it turned out to be a perforated bowel, but I couldn't say whether any gut had been removed or if it had simply been repaired. It was only in 2011, when I obtained copies of all my medical records from Croydon Health Authority that I could finally give the definitive answer.

Since then I've painstakingly, some would say anally, extracted all the key points from consultation notes and follow-up letters and summarised the whole lot, in date order, onto a spreadsheet. This is my "back-up" evidence from which I have then drawn up a simple, one page chart representing my full Crohn's history and a second, more detailed one, covering the last 3 years. My current set of consultants seem to approve of this approach and have put copies into my notes.

Unfortunately very few x-rays were still available but I consoled myself with a couple of more recent CT scans which I managed to convert to movies. I find them fascinating but my work colleagues are not quite so sure.

Maybe a step too far! Movies of my CT scans on the phone
5) Contacting your consultant between appointments - Some consultants are happy for you to email them directly when you have a query or a problem or there may be a dedicated, condition specific, helpline that you can use as the first point of contact. It really does seem to vary. I have read of other patient's experiences where the "patient confidentiality card" is played to avoid email contact. I've never come up against this. So far so good. You should be able to work out an individual email address as organisations like to follow a particular format or you could simply ring up their secretary and ask for it straight out. Nowadays many hospital websites clearly display the consultants contact details.

This doesn't come without some responsibility from the patient's side. I make sure that I only contact the consultants directly if I have something that is urgent and only they can answer or they've asked me to report back about a problem. I'm being treated by three different specialities so I usually copy any emails to all three consultants as it helps to maintain the co-ordinated care.

6) Follow-up letters - shortly after an appointment or procedure your consultant should write a letter to your GP - secondary care provider to primary care provider. These letters are important to keep your GP up-to-date with your condition and a copy should also be sent to you, normally with a caveat that it is a communication between medical professionals.

This system of follow-up letters has always worked smoothly for me with gastroenterology and hepatology issuing them a couple of days after the appointment but then I came up against Haematology. The appointments were fine. Lots of good, open discussion but no follow-up letters. Four appointments and no follow-up letters. I did query this a number of times but still no follow-up letters, just apologies. In the end it all came to a head.

A few months on and guess what, still no follow-up letters. In the end I looked at the GSTT website and found the name and email address of Haematology's head of department. I contacted her, explaining the situation and suddenly I had four, retrospectively written, follow-up letters.

Are there lessons to be learned? I think so.

Lesson 1 - If you are not getting the service you should expect then go to the top and complain. Will this always work? No, but might at least set the wheels in motion.

Lesson 2 - Keeping your own record of what gets discussed and agreed during a consultation is worthwhile if you end up in a similar situation to the above. I use a blog to record what goes on but if you don't want to share your experiences with others then keep your own private health diary for future reference.

7)  Manage Your Appointments 2 - er, haven't we already done this one? Yes, but this is managing how the actual appointment goes. I've left this one almost until the last as it's fairly new territory for me. I hope to develop the theme in the future to reinforce the notion that the patient should manage the appointment not the doctor.

What triggered this whole train of thought was a visit to Haematology when things started to go wrong. My usual consultant wasn't available so I was being seen by a new doctor. He started discussing a subject that had already been "parked" a year previously. I thought I was there to discuss the pros and cons of taking warfarin.

At that point it struck me that going into the appointment I had a very clear idea of the outcome I was expecting and the information/areas/risk factors we needed to discuss to arrive at a conclusion. If I hadn't kept my own notes (in the form of my blog) I could easily have just covered old ground.

I'm wondering if it would be worthwhile starting the next appointment by explaining where I want to be the end of the appointment and how I see us getting there. Would that be too pushy?

8) and finally - as always - keep a sense of humour if you can - useful in surviving ALL medical encounters but I accept this is not easy if you feel really terrible; you've been waiting an hour to be seen; the phlebotomist has made several attempts at finding a vein; that person who arrived after you has just been called in before you; etc. - I'm sure we've all been there.

Sometimes humour doesn't work. A few of the doctors I have met do seem to have had a "humour bypass" (I'd just like to make it clear that this doesn't apply to any of the fine doctors who are treating me at Guys and St.Thomas', especially the ones that drive the endoscope or the biopsy needles). I have however been left in the situation in other, lesser establishments where my witty remark has gone down like a lead balloon and I'm left staring at a doctor who is clearly thinking "should he be in the psychiatric ward?".

..and remember if you've been kept waiting longer than you were expecting it's probably because your consultant has spent more time with preceding patients than the allotted 10 minutes. This works both ways. You may also need more than your ten minutes.