Thursday, 10 September 2015

Guilt, Research and Planning

Guilt

I feel kind of guilty writing this post as it finds me laid back and generally at one with the world whilst I know there are many fellow IBDers who are really suffering at the moment. You only have to dip into the Crohn's Community on SoMe to read some sad , harrowing tales.

I've come to terms with this guilt by telling myself that my current situation may help others realise that there will be times when life returns to relative normality. As I approach the fifth anniversary of having an ileostomy my memories of that event are starting to fade which is why.........

Further Research

Have I mentioned before that I am in the process of writing a book? It will explain the "journey" from diagnosis, in the dim and distant past, to my current state. It has a target readership of, er, one. Obviously I hope it ends up with a few more and proves of help/interest to other sufferers or even medical professionals who want to understand the patient experience from the other end of the endoscope but having said that, I am writing it primarily for.... myself. The reasons?

1)   A new challenge; something to keep the brain functioning; a chance to be creative. I want to see if I am capable of producing something that is half readable?

2)   To achieve a sort of “closure” up to this point, on the basis that once I have everything documented I can put the eBook on a virtual eShelf and leave it there

The book is nearing completion. As part of the process I have been re-reading the posts on this blog. Those covering the period from August 2010 were written as they happened. This re-visit has thrown up a few gaps in my account or need further examination. One passage in particular piqued my interest. It was a comment made by one of the team of surgeons who carried out my ileostomy almost 5 years ago. I saw him at the local hospital a few weeks after the op and he remarked on how well I looked considering “what they had done to me”. Sounded sinister. He went on to describe the operation as a “classic” and one of the “most complex they had ever carried out”. In a game of operation top trumps I’m sure this would score quite highly although the whole thing only took four and a half hours which is relatively quick compared to others I have read about. Maybe the fact it was done using open surgery, as opposed to keyhole, sped things up.

But what exactly had they “done to me”? I emailed the surgeon a few weeks ago to see if he kept records of each operation. He replied that I would need to get access to my patient file from St.Thomas’ and find the Operation Note. As he no longer worked there hospital he had no access to their system but he kindly offered to “translate” the document should I get hold of it.

Up until recently I hadn't bothered obtaining copies of my St.Thomas’ notes as I had been studiously filing all follow-up letters as I received them and writing up accounts of appointments/procedures for this blog. However it struck me that, for completeness, I should try and get hold of the notes as they may add some detail to the narrative. I filled in a request form and took it, together with the £20 fee and proof of ID, to the Information Governance Department at St.Thomas’. I requested the complete file, with the exception of follow-up letters, and for any x-rays or scans that were available. The hospital's target was 40 days to produce the requested information but it only took 30 days before it was ready for collection. The packet contained four CDs.

I was eager to find out exactly what was on them. Three discs contained imaging and x-ray files in a format I was unfamiliar with, DICOM. I found a software package on the web, OsiriX, that would open the files and, for non-commercial use, the Lite version could be downloaded free. The software translates the scans into 3D images. Fascinating, almost artistic. Like something out of a Hieronymus Bosch painting. Did I understand what I was looking at? To be honest, no, and I am still trying to find the optimum software settings that will make things clearer.

On the final disc was one large pdf file made up of scans of all my notes but in no particular order. 730 pages covered just under 5 years of treatment. On closer inspection there were many blank pages, mainly the back pages to reports, but even with these deleted the page count was around 650. It took a couple of evenings work to get them into some semblance of order.

I eventually found the Operation Note from October 2010 and decided to take the surgeon up on his offer to "translate" it. I hope he doesn't regret it. I am awaiting his response so maybe he has thought better of it.

The other pages that immediately grabbed my interest were the Nurses' notes and observations from my two in-patient stays. It was interesting to compare the nurses' accounts with my diary entries for each day.The process of revising my original posts is taking a while. As the nights draw in it should focus the mind better.

Haematology II Guy's Hospital - 25th August 2015

As part of my "closure" I had a routine, six monthly Haematology appointment, or Harmatology as my spell check insists. For the first time I struggled to come up with any questions to ask. I eventually managed the following :
  • Latest platelet count? Just out of curiosity as I knew it would be well outside the normal range
  • Do we need to revisit the Warfarin decision at some point in the future?
  • Do I need to continue with iron tablets?
  • Should I be prescribed more vitamin D capsules?
Answers - 56; No; ask GP to check iron and vitamin D levels

On the basis of the above we agreed that appointments could now be yearly and that suits me fine.

Planning Ahead

Time to think about what's on the horizon. Following the pattern of the last couple of years there will be the yearly upper GI endoscopy in late October with the possibility of further procedures if they find I need variceal banding. The lead time for booking an endoscopy is six weeks. If the system is working correctly then the appointment should automtically get booked but I never leave it to chance and normally give Endoscopy Appointments a ring. I half minded to leave it this time and see what happens.

Then there's the six monthly gastro appointment in early November for which I need to make sure I've got the results of a calprotectin test back....and, depending upon the result, potentially a two yearly endoscopy to see if I have managed to remain in clinical remission and to have a look at my anastomosis.

...but hold on. I've just realised I had a colonoscopy in February this year. Have I really managed to put Crohn's so far to the back of my mind that I have forgotten havng a camera stuck where the sun don't shine? Maybe it's because I was given a larger dose of sedative than usual and was out cold for the procedure.

Tuesday, 19 May 2015

My blog is in remission.....

19th May - IBD Awareness Day - and my blog is in a sort of remission. It's not cured as we all know there is no cure for blogging. Achieving the next big milestone of 50k hits may prove difficult if it goes into deep remission although the steady stream of Russian porn site spiders searching for "anaesthetic fetish" stories (yes, honestly!) may help get there.

The days of weekly, sometimes daily, updates seem like a distant memory. Clusters of outpatient appointments and procedures have been thinned out to 6 monthly intervals. The next scoping session will be  late October and there maybe a colonoscopy just before Christmas.

How does this make me feel? Mixed emotions oddly enough. I am obviously pleased to have reached some stability healthwise but I've grown so used to having to think about medical matters, given 2 or 3 years of intense medical activity, that it feels strange to have more time to devote to other aspects of life. Producing this blog has greatly helped me to get my health issues into perspective and the very regular appointments/procedures have proved to be a rich source for writing posts. This blog was set up for the specific purpose of recording "the rich vein of experiences along the Crohn's highway and some of its detours." I'm hoping that some of the content might just strike a chord with other Crohn's sufferers and they will realise others understand what they are going through or maybe give them some warning of what could lie ahead.

My health related creative efforts have now been redirected into writing a book based on this blog. It's nearing completion which, as my wife would point out, is the status of most things I start. (Anyone familiar with the Belbin Theory will understand the problem - low score in the Completer/Finisher category)

I still have some health concerns. The diagnosis of severe Bile Acid Malabsorption late last year has given a name to, and a reason for, the continuing dashes to the bathroom. Now I have this explanation I can visualise what the problem is, what is likely to exacerbate it and what can be done to manage it. I've become strangely relaxed about the issue.

My other health concern is keeping fit. Statistics show that if you've already had surgery for Crohn's it is likely that you will end up under the knife again. The speed at which you recover is, in part, helped by being fit and up to weight at the time of the operation. My first operation was 1979, the second 2010 - a 31 year gap - who knows when it will happen again but I want to be as prepared as possible. My chosen regime is to walk whenever possible. I'm trying not to become too obsessive about the distance I walk each day but it does feel good when the app on my phone announces "All-Time Record" (currently 17.6 km).


The impetus to keep walking is helped considerably by working in London. There are so many possible routes to get to and from work that it never becomes routine or boring. There is always something new to see and photograph. At 7:00am there are very few people about. I've set myself a challenge of posting at least one Instagram photo a day (account name = crohnoid) with either a new angle of an existing view or something transitory or a new experience.

Having rambled on so long it's time for another appointment...............

Tuesday 5th May 2015 - Gastroenterology - St.Thomas' Outpatient's Clinic

The forecast said 50 mph winds and I could vouch for that. Crossing Westminster Bridge was "interesting" and made more so by the polar bear halfway across. I think it was the continuation of the PR stunt for SkyTV.

Sky TV's Polar Bear on Westminster Bridge
This was to be a routine, six monthly appointment. I had prepared a short list of questions to ask.The visit started as normal. Get weighed. Wait. Go to Room 18 - see Registrar. Explain that I would like to see usual consultant for the sake of continuity. Return to waiting area. Wait for new message to appear on laser display screen. Go to Room 19. (Appointment time 2:50pm, in with the "right" doctor by 3:20pm. Not bad).

I knocked on the door, list at the ready, and entered. I got a warm welcome from my usual doctor who had a medical student sitting in with him.  My notes were on the desk. The file was so thick it looked like it couldn't take one more sheet. "We need to get a new one of these". I replied that I might just have the solution as I had written a book covering my medical history and experiences including the treatment at St.Thomas'. He seemed genuinely surprised. I assured him it was for real and that I was currently going through the final stages of editing and proof reading. I reassured him that he wasn't mentioned by name and that it was all positive anyway!

That prompted a discussion on doctor/patient communication and how patients react to what they are told. He considered himself to be a good communicator (I'll second that) but was concerned that without him realising it a seemly innocuous remark, made in passing, could take on far more significance to a patient. We then went on to discuss when and where it is appropriate to tell patient potential bad news. I mentioned that there were two things I wish I had been told about prior to surgery, and that they were on my list.......

1) I had been quite tired over the last couple of months and even the B12 injection three weeks ago didn't seem to have made a difference. He suggested that next time I had a blood test I should get checked for iron and vitamin D levels. I did mention that last week I had walked nearly 50km to and from work and at lunchtime, so maybe I should be cutting back a little. That lead off at a tangent to the merits of exploring London early in the morning, or on a Sunday, when the streets were quite deserted. I couldn't resist mentioning the Sky Garden (at the top of the WalkieTalkie building) that we had visited a few weeks ago. (There are a few photos at the bottom of the post).

2) As ever the ache around my anastomosis (join) comes and goes. It was worse after physical work or with a full gut. We had previously agreed it was probably just a mechnical issue as the recent colonoscopy had shown no sign of inflammation. He wondered if there might be some inflammation in a part of my small intestine that neither the colonoscopy or the previous endoscopy had reached. There was a technique, called a balloon assisted enteroscopy, that allowed the scope to propel itself right through the small bowel.......that's enough thinking about that one. I asked if a capsule endoscopy would be better but he replied the disadvantage for some patients was the possibility of the capsule becoming stuck if there was a stricture along its path.

Maybe it was time for another MRI scan as the last one was three years ago. He recalled that it had suggested inflammation but the subsequent colonoscopy had shown nothing. He said that sometimes you could get conflicting messages with no explanation as to why the difference.

3) The plan going forward. The current monitoring regime consisted of six monthly calprotectin tests (with possibility of a colonoscopy if high reading), yearly upper GI endoscopies to check for growth of esophageal varices and six monthly appointments with haematology to keep an eye on my low platelet count/PVT. Were there any other tests I should be having that might be age related? "No."

He set the next appointment or six months but I will fine tune the actual date, nearer the time, so that it is after the annual endoscopy. It will also be down to me to make sure the results of the calprotectin test are available.

4) BAM. I'm becoming increasingly convinced that Bile Acid Malabsorption is a subject that not enough patients, who have been through IBD surgery (ileal resection), know sufficient about. This was one of the two subjects I wish had been discussed prior to surgery.  It could be part of the pre-op assessment with either the Enhanced Recovery Nurse or the surgeon.

My thoughts for raising awareness
The other thing I wish I'd been warned about was ileus, or the lockdown of the digestive system, following surgery. I explained that unless you have suffered intense nausea you have no idea how bad you can feel. I wasn't joking when I said that it was a good thing the windows on the 11th floor surgical ward at St.Thomas' were non-opening. I really would have jumped! Both of them looked surprised.

5) This one was more out of curiosity - is there a link between shingles and having an IBD flare-up? In preparing my book, I had found a reference to the bad attack of shingles I suffered in 2005. As I read on I realised that a flare-up started shortly afterwards, breaking the remission I had been in for quite a while. He wasn't aware of any link, in his experience, but there were common factors such as stress that might cause a trigger.

6) Getting involved. I've been cutting back on work recently. For the last six months I've only working three days most weeks. Whilst I have plenty to keep me occupied in my spare time I felt I could at least use part of it to give something back to the IBD Community but wasn't sure how I could help. He ran through a number of ideas that they had been discussing at Guy's/St.Thomas' - research, patient panels - where they would like to include "lay" representatives. I asked him to bear me in mind for such an opportunity.

Appointment over and a chance to brave the high winds again. By now they had died down a little and the sun was shining so I decided to take a slight detour on my route back to Victoria and walk down the Albert Embankment. It's not a walk I often do but will certainly repeat it.

A popular location for oriental pre-wedding photos
Film crew reporting on the 2015 Election
View from Lambeth Bridge
If all goes to plan the next post should be to announce the completion of my book. Still need a decent title though. Suggestions welcome.

Sky Garden  - photos
View of The Shard from the Sky Garden
View towards Westminster
The Gherkin from the WalkieTalkie
View towards St.Paul's Cathedral




Thursday, 19 March 2015

Crohn's Disease and Bile Acid Malabsorption (BAM)

I have covered this topic a couple of times before. Recently I have seen an increase in the number of questions and comments on IBD forums relating to BAM. I believe that increased awareness would help many Crohn's and IBD patients.

I produced this simple slide, aimed at one particular group of at-risk patients. It's self explanatory.

Right click to copy this image
Here is an extract from a document published by NICE (National Institute for Health and Clinical Excellence)  - "Crohn's disease is sometimes treated by ileal resection. The prevalence of bile acid malabsorption in people with Crohn's disease in clinical remission who have had ileal resection is high (97%)".

My own situation : ileal resection and stoma - October 2010; reversal - June 2011 and clinical remission ever since, confirmed by colonoscopy a fortnight ago. I had expected after the operation, and being in remission, that my digestive system would have returned to pre-Crohn's normality. No. I would often suffer from an "upset stomach" with its attendant rushes to the bathroom. I kept asking myself, and questionioning on this blog, had I eaten something dodgy; picked up a virus or was I undergoing a Crohn's flare?

I mentioned it at each outpatients appointment but it wasn't until Autumn 2014 that my consultant suggested I should undergo a test to confirm if I was suffering from BAM. Of all the tests we get put through this must be one of the easiest. It's called the SeHCAT test and involves swallowing a capsule containing a mildly radio active substance which dissolves and becomes a marker absorbed by your digestive system. You then have two x-rays, one week apart, and the x-rays the analysed to see how much marker remains in your system.

Anything less than 15% of the marker remaining is considered to be malabsorption. My own reult was under 1% which is classified as "severe". There are drugs available to treat the condition. The most common appears to be Questran but some patients find it diificult to tolerate taking it. So far I have managed to keep it under control with good, old Loperamide.

However, since being diagnosed I have found my symptoms have greatly improved, not because of taking new/additional drugs but because I now know what my digestive system is up to and it's not a sign that I'm about to descend into a flare. I feel a lot more relaxed if I do have an upset stomach for a couple of days.

My understanding of the BAM mechanism is that during the digestive process your stomach uses bile acid to break down the food you eat. When the acid/food mixture reaches the last section of the small intestine, the ileum, the acid is reabsorbed and passes back into the biliary system. If you no longer have an ileum the acid passes from the small intestine into the large intestine, causing diahorrea. (The ileum also absorbs vitamins, which is why it is important to supplement them, for instance having regular B12 injections)

I hope, by writing the above, I've managed to convince you to add BAM to the list of questions you ask your consultant/surgeon next time you see them. This is especially important if :

a) You have had an ileal resection and suffer from chronic diahorrea
b) You are about to undergo surgery which could involve ileal resection, especially the removal of the terminal ileum

Please feel free to copy the slide above and pass it on as widely as you can. It might just help fellow Crohn's/IBD patients gain a better quality of life.

When I was doing the research for this post I came across this Research Proposal from Guys and St.Thomas' Hopital. Maybe BAM really will achieve greater awareness in the not too distant future.

Click to enlarge


Saturday, 28 February 2015

Crohn's Disease - DIARY - Starting 2015 Take 2

...and for my next appointments - Endoscopy Suite, Haematology then Endoscopy Suite again. I really could do with a gap year from Crohn's. This was going to be one of my shorter posts but as I use them for jogging my memory before the next appointment it has ended up with a bit more detail than I had originally envisaged.

Just a quick recap. I've had three calprotectin (stool) tests over the last 12 months or so and whilst the first one gave a good result the other two have shown a rising trend suggesting there was inflammation in my gut. My consultant thought it would be prudent to have a colonoscopy as I hadn't had one for just over two years. Just to complicate matters I've been taking Omeprazole which has been shown to give elevated calprotectin levels but I think that's clutching at straws. If it's the Omeprazole then why weren't all the results elevated as I started taking it in 2010?

Recently I've been feeling very well. No abdominal pain. No bathroom dashes. Even the ache around my anastomosis has been far less frequent. When in London I've been walking around 10km a day for exercise. I was curious to know what the colonoscopy would show. I will admit to being a little concerned as the findings would have a big effect on how 2015 went......

Monday 9th February - St.Thomas' Endoscopy Suite - they work on the principle that before you have a colonoscopy you are required to go in and personally pick up the preparation tablets/sachets so that they can run through exactly when you need to take them for a "successful evacuation".

Unfortunately I had a long wait but when the nurse eventually appeared she did apologise. I recognised her from my very first colonoscopy at Guys/St.Thomas' several years ago.

As an old hand at these things I went prepared with the timings already in my calendar. But no, since the last one I had in 2012, they've changed the regime. Instead of taking all the prep on the day before the procedure you now take the final sachet on the morning. I was wondering how that works for the train journey up to the hospital?

The advice leaflet has been rewritten and answers a question I have long wondered about - why do some patients get given 2 litres of Klean-Prep to drink whilst others have 2 x 150ml of Citrafleet? The answer : if the doctors are concerned about your kidneys or you have kidney disease they may choose Klean-Prep or Movi-Prep as these are less likely to affect your kidney function.

..and why do they tell you to avoid drinking red juices or cordials? Something to do with fibre content? No, it's because they don't want any residues of red coloured liquid in the gut that could be confused with blood. Obvious really.

As I was leaving, clutching some senna tablets and two sachets of Citrafleet in my hand, the nurse advised me to arrive early as my consultant always like to start on time and it takes a few minutes to attach the wristband/insert the cannula.

Wednesday 11th February 2014 - Guys Hospital Haematology 2 - Not much to say, for a change. This turned out to be a routine appointment and I didn't have a long list of questions. The obligatory blood test showed all my levels were OK except platelets. No surprise there then. My consultant reiterated her advice "not to get hung up on numbers" ie. platelet count. She repeated her description of my bone marrow as being "a 4 cylinder engine running on only 3" and therefore not delivering the right quantities of platelets. Next appointment - 6 months.

Countdown to Colonoscopy - a brief description of the lead-up to the procedure just in case it might help others who have not experienced the delights before. (Old hands please skip down the page)

Saturday 21st February 2015 - 4 days to go - stopped taking iron tablets. Didn't make a lot of difference.

Sunday 22nd February 2015 - 3 days to go - stopped taking Loperamide. I wondered how long it would take for the effects of the drug to tail off. Could be an interesting train journey into work tomorrow.

Monday 23rd February 2015 - 2 days to go - stopped eating anything with fibre in ie. fruit, vegetables, nuts etc. Drank lots of fluids. Train journeys to and from London were fine.

Tuesday 24th February 2015 - 1 day to go - worked from home. Light breakfast and then nothing after 9am except lots of fluids. Had a phonecall from Endoscopy Appointments saying that 4 patients had all been booked in for 1:00pm for Wednesday so they were putting me back to 2:00pm. This was a bit annoying as I had carefully worked out who was going to collect me from the hospital after the procedure. Had to rethink my plans.

 At 4pm - took 4 senna tablets; at 5pm - took first sachet of Citrafleet dissolved in 150ml of water and stood by for its effect.

Prep then kicked in, yu can guess the rest. Coughing to be avoided at all costs. 

Wednesday 25th February 2015 - St.Thomas' Endoscopy Suite - at 7:30am took the second sachet of Citrafleet and drank lots of fluid until 11:00am then nothing. 12:30pm down to Redhill Station, which luckily has toilets on the platforms, and then the train journey to Waterloo and a ten minute walk to St.Thomas'. All achieved without a problem. I think next time I will take the second sachet a lot earlier. Suprisingly I didn't feel that hungry. I know on previous occasions I have been absolutely famished and that was the abiding memory of having a colonoscopy. The procedure itself is a piece of cake (not literally of course).
View from St.Thomas' Endoscopy Suite Waiting Area
Arrived at the Endoscopy Street at 1:45pm and booked in. At around 2:30pm was still sitting in waiting room when the fire alarm started sounding. One of the nurses announced that it was a fault and there was no need to move. The alarm finally stoppped but it was now gone 3:00pm. My consultant appeared, greeted me and said "I hope you bought something to read with you". I knew then it would be a lot longer before it was my turn to be scoped. He made some comment about having to leave the building to which I replied "that would have been the second evacuation of the day for me".

Finally, at 4:00pm, the nurse called my name and it was time to get changed into a surgical gown. I'm pleased I took a dressing gown with me because I can never get the tie-ups to knot properly. A cannula was inserted into my right hand, for a change, and it was off to the pre-procedure waiting area.
The obligarory photo of a cannula
I was the only one in there so at least there wasn't a queue. A doctor working on a IBD research project appeared and asked if I would be prepared to take part. She would like a blood sample and some biopsies. She gave me a leaflet to read about it and said she would be back shortly with a consent form.When she came back I said that I was happy to help with the research but it was not certain that I would need any biopsies done and that I didn't want to risk upsetting my gut unnecessarily. I agreed that should routine biopsies be required then she could take additional ones otherwise I would prefer not to. I signed the consent form on that understanding.

I found this in a magazine left in the waiting area - rather apt
Shortly afterwards my consultant appeared and explained that he had a young Registrar training with him who was showing a particular apptitude for scoping. Would I mind if the Registrar did the colonoscopy whilst he watched. I didn't mind, it was just another procedure. Of more interest was how much longerI would need to wait? They were just finishing up. He went off to get a consent form and when he came back was happy to answer a few questions. The main one was "can there be a long period between the calprotectin test showing a rise in inflammation and a flare occuring". Yes and that's why they use the calprotectin tests to show if intervention is needed and allow medication to start before the patient is ever aware of any symptoms. It could be described as over treating but it is preventative rather than reactive.

He mentioned he had been interviewed by BBC2's Newnight on the subject of fecal transplants for combating C diff, for which it had a high success rate, and the discussion had also turned to IBD. He did not know when the report would be shown. He described a fecal transplant as being like giving a giant dose of pro-biotics but it's use to help IBD patients was still in the research stage. I also asked if the camera did show inflammation was there an alternative to Azathioprine. Yes, there were lots of alternative drugs now available and they worked in a more targeted manner.

Just before 4:30pm it was time to enter the procedure room, quite a familiar environment as I had had a couple of upper GI endoscopies in there last year. There was a team of six, maroon clad doctors and nurses, three of each. I got onto the trolley and had the oxygen feed attached. I was asked to roll over onto my left side and bring my knees up to my chest into the best position for introducing the camera.
Endoscopy equioment
Did I want sedation? Yes please. The same amount as last time which would leave me sufficiently awake to watch the images in glorious, living colour and ask "what's that?" as the camera traveled ever onwards. Whilst the sedatives were being prepared I saw the opportunity to discuss Bile Acid Malabsorption (BAM), a subject now close to my heart. I explained that after my operation, back in 2011, I had expected my digestive system to return to normal. I had no knowledge of possible BAM and its side effects (chronic diarrhoea). From the posts I have read on various IBD forums and FB pages many others are in a similar position. It really is a subject that needs much wider awareness within the IBD Community. I'll keep plugging away at this one.

Time to put the soap box away. Four syringes of sedative injected into the cannula and we were ready to go. It was time to find out what state my guts were in. The sedative had taken away any sense of foreboding that I might have had. After the initial sensation of the camera being inserted I felt nothing. We were all looking at the images on large monitors as the camera started its journey. From that point I cannot remember the the rest of the procedure or asking any questions. I don't know whether I was conscious but the sedation has dulled my memory or if I lost consciousness so there is nothing to remember anyway. I vaguely recall discussing what we were seeing with my consultant and whether the camera had made it to my anastomosis but it is very hazy. Maybe I'll ask for a little less sedation next time.

I woke up in the Recovery Room where my blood pressure and oxygen levels were monitored. Once they could see my readings were OK I was allowed to get dressed and make my way to the Discharge Lounge where I was given a cup of coffee and some biscuits. At that point my brother-in-law arrived to accompany me home. I just needed to have the cannula removed and to be given a copy of the report. I was disappointed that the report was in black and white but it did show that there was no significant signs of inflammation. I was given a Rutgeert's Score of i0. Very goods news and I was free to go. We left St.Thomas' just gone 5:30pm and walked the 3 km back to Victoria Staion via the backstreets of Westminster.
Walking across College Green opposite the Houses of Parliament
Whilst I was having dinner I re-read the colonoscopy report (copy below) and it struck me that it wasn't very clear.
Click to enlarge
I emailed my consultant asking for clarification :

"Please pass my compliments on to your Registrar as he drove the camera very well and I have felt no after effects. I think the sedation must have taken over at some point because I don't remember asking how what you saw on the scope squares with the rising calprotectin values. Also having now got a copy of the Endoscopy Report I'm puzzled by the first sentence in FINDINGS. Should "with" read "without"? Was there anything unusual at the anastomosis?"

The next morning I received a response :


"Oh dear - that's not the best written report. I will get it amended. Apologies
The terminal ileum was entirely normal as was the anastomosis.
There was some mild inflammation in the colon - not impressive enough to treat to be honest, but this is probably the cause of the mildly raised calprotectin.
I'm glad the experience was acceptable and will pass on your comments - thanks for the feedback.
"


Conclusion

I had half been expecting the scope to find nothing but, as with all health matters, you can never be certain. I'm not going to tempt fate by predicting a quiet year bit, here's hoping.....

Next GI appointment  - 6 months time and no need to re-start Crohn's medication.

Tuesday, 27 January 2015

Crohn's Disease - DIARY - Starting 2015 as we mean to go on..

I've been trying to think positive thoughts. A new year; a new opportunity to put Crohn's on the back burner, or maybe not....

Thursday 15th January 2015 - St.Thomas' - the first appointment of the year. Not one I had been expecting until the letter came through the post. I was in half-a-mind to cancel. It was the follow-up to seeing the dietician in October 2013 to talk through the benefit of low FODMAPs.

Since our last meeting I had a new diagnosis to contend with - Bile Acid Malabsorption. We spent about 40 minutes discussing many different aspects of diet. She recommended that I try and increase the amount and variety of fruit and vegetables in my diet. She also suggested taking multi-vitamins each day as the loss of my terminal ileum would mean not absorbing them properly from normal food.

I seem to be unable to get my BMI out of the overweight range (currently 26.1). She told me not to get too hung up by the numbers. Whenever I'm working in London, generally three days a week, I try and walk at least 10km during the day. I'm trying to achieve the balance between keeping fit and keeping the weight on, which may sound a little odd. My gastro consultant likes his patients to be on the slightly heavier side in case there is the sudden need to undergo an operation. (I lost around 5kg after my last one).  I want to keep fit for the same reason. As you get older the recovery process takes longer so the fitter you are at the start, the better.

Tuesday 27th January 2015 - St.Thomas' - first gastro appointment of the year was originally planned for 13th January but I had, stupidly, taken my calprotectin sample into the pathology lab too late. A quick email to my consultant's wonderful secretary and she slipped my appointment back two weeks so the results would be available.

Here's the list of questions/points I had come up with for discussion :


I arrived shortly before my allotted time and waited for my name to appear on the "laser display screen". It must have been about 15 minutes before it appeared - "Go to Room 17". When I opened the door one of the registrars greeted me and introduced herself. I didn't stand on ceremony. I explained that  I really wanted to see my usual consultant, for continuity's sake, and was prepared to wait accordingly. She was fine with that.

Back to the waiting area. Before now I've had to wait anything up to another hour but this time it was only ten minutes - "Go to Room 18". When I entered the room my consultant had two other doctors sitting in with him, one visiting from Greece; the other a junior doctor working within the department.

I produced the list and my GI explained to the others that I always had a list and that he liked working that way.

1) What did the calprotectin result show? 188. Not good. Previously I had been around the 50 mark. This new result suggested that inflammation had returned. Bugger!

2) Blood test results? All OK except platelets, although these had now risen to 86, up 20 points, so actually an improvement.

3) Do I need a colonoscopy? Yes. Given the elevated calprotectin level the only way of checking for inflammation was to go in with the camera. I noted that, thankfully St.Thomas' use Citrafleet which only requires drinking 300ml of liquid and a small bottle of senna. The thought of drinking 4 litres of Klean Prep, as used by some other hospitals (and in Greece BTW), filled me with dread. Request typed into computer with note about Citrafleet. Just need to wait for appointment to come through. My consultant would be driving the camera.

We then had a short discussion on how much sedation patients are given. I like to be as awake as possible so I can ask questions there and then and not have to wait for the follow-up appointment to get any bad news. The Greek doctor said if he was having it done he would want to be out cold!

4) I mentioned that over the Christmas period I had felt really rough - lower back pain extending down the backs of my legs; and ache around my midriff and very tired. As always with Crohn's it was difficult to know if it was the Crohn's itself, a virus I had picked up or overdoing sweeping up leaves.

5) We then had our usual conversation about the ache around my anastomosis, which comes and goes, especially after physical exertion. He said that after surgery it is entirely to be expected and that hard, physical effort would probably aggravate it. One to park I think.

6) I ran through my discussion with the dietician - see above.

7) More an observation really - I am very surprised that two capsules of Loperamide are controlling the Bile Acid Malabsorption and that I currently don't need to take Questran or similar.

8) My other observation was the lack of discussion (as far as I can see) of BAM given the prevalence in patients after ileal resection. I felt that it really should have wider coverage and that the SeHCAT test should be routine given the severe diarrhea it can cause and that the symptoms may appear to be the Crohn's itself and get treated as such. I quoted the NICE statistic that I had found.

9) I asked him to pass my thanks on to his secretary. She really is exceptional and always goes the extra mile to get things sorted out. He agreed and said how pleased he is that she works with him.

10) I wondered if the Gastro department ever held open Q and A sessions that enabled patients to come along ask general questions about Crohn's/IBD to increase their own understanding of the disease. He replied "not at present" but they had been discussing ways of engaging better with their patient base. He would pass my name onto the person charged with the task.

I explained that I'm getting to the stage where I would like to give up work and devote some time to helping the Crohn's community although I felt I knew very little about Crohn's and in the grand scheme of things had escaped very lightly compared to those who had had 20+ operations. He felt I was doing myself a dis-service.

And that was it. Follow-up appointment for six months time but, as he pointed out, the next time he saw me would be from the wrong end of an endoscope. His "list" had now been moved to the new Endoscopy Suite at St.Thomas' which pleased him as the equipment was better than his old clinic.

I walked back to Victoria Station somewhat disappointed. I had hoped the calprotectin level was still around 50. If the colonoscopy does show that the inflammation is returning the next question will be how to deal with it. We know Azathioprine isn't an option.

Next planned appointment - Haematology at Guy's - 11th February 2015....or will the colonoscopy come along first?