There hasn’t been an #IBDChat on Twitter for a while so the last hour or so has been quite enlightening. We may have strayed from the original subject of “the causes of IBD” but it gave a good indication of the subjects that sufferers are concerned about.
The conversations were mainly about the physical aspects of IBD and it wasn’t until close to the end that any psychological aspects were mentioned. It does seem to be an area that needs more open discussion both inside and outside the IBD community. For some sufferers the psychological effects may be even more debilitating than the physical ones.
I have used the hashtag #crohnspatterned to describe how I feel Crohn’s has affected me. When I checked to see if the tag had been used by anyone else it turned out to be unique. I’m sure the phenomenon is far from unique and will affect sufferers of other chronic conditions as well.
Let me make it clear that I have escaped pretty lightly both physically and mentally but the experience has been enough for me to realise how things could escalate. I’m starting to feel that Crohn’s now has me patterned like Pavlov’s Dog.
(Just in case anyone is unfamiliar with the story of Pavlov’s dog here’s a three sentence version. Pavlov was a Russian psychologist born in 1849. As part of an experiment he found that it was possible to condition a dog to associate the sound of a bell with receiving food. The dog, eventually, would salivate at the sound of the bell in anticipation of the food.)
I have a variety of “bells” which act to trigger my digestive system into action, unfortunately we’re not just talking saliva. The main triggers are the alarm in the morning; that chiming sound on public transport that heralds the “this train is about to be delayed for an indeterminate time” announcement; the sound of my car starting as I am about to embark on a long journey. So far I have been able to control the effects by extra Loperamide capsules (Imodium) and mind over matter but I can envisage a time when they simply are not enough. Maybe this is all linked to having a “second brain” in our gastrointestinal systems and the triggers are affecting it.
I made a comment on the #IBDChat that I find the use of words such as “poo” and “pooping” when discussing IBD rather demeans the subject and makes it appear less serious than it is. Just my opinion. You may or may not agree but that leads me neatly onto….
I will admit to preferring the medium of blogging to vlogging. Why? Because I can read and concentrate on the content without being distracted by the colour of the curtains in the background or the appearance of the vlogger, etc. Maybe it’s a generational thing as selfies don’t do a lot for me either. Whatever.
A fellow IBDer asked me if I’d ever watched any of the IBD vlogs on YouTube and I had to admit that I hadn’t. They asked me to have a look at a particular one and asked my opinion of it. Now I am not stupid enough to name that vlog here or what the subject was. I don’t want to start some internecine spat within the IBD Community but. ….
I found the vlog, hit play and sat back to be educated or enlightened. After a few seconds I started to ask myself if it was a joke or some kind of spoof. I discounted irony. I kept watching. It made me feel uneasy and I started wondering what benefit it added to our IBD world. If this was meant to be adding to the cause of IBD awareness then it failed.
If you are going to make an IBD vlog then please make it relevant and don’t cheapen the subject. Nuff said. Can’t see myself making one anytime soon.
“Thank you for letting me join the group. I’m a 22 year old male and have not been feeling well over the last year or so. I make frequent visits to the bathroom and my weight is dropping off. I’m currently 54kg which is not great when you are six foot tall. I went and saw my GP. He initially told me it was “nerves” and later changed that to “spastic colon” but having recently spent 10 days in Croydon’s Mayday Hospital, undergoing tests, the diagnosis is now Crohn’s disease. I’ve been prescribed steroids for the inflammation and codeine phosphate to slow my system down. I know that the disease has no cure and that if I’m unlucky I could end up having surgery. That’s the bit that really scares me because the thought of going into hospital fills me with absolute dread. Just going there for a barium enema was bad enough….”
If Facebook was older, and had been around in 1978, I may well have posted the above. Nowadays I read similar stories from young adults, many also in their early twenties, explaining that they have been recently diagnosed and the impact that diagnosis has had upon them both physically and mentally. Some are truly heart rending. I tend to forget I was in a similar place all those years ago.
A few decades on and I am currently in clinical remission but not without a few related health issues arising along the way. I would like to hope that others, who have just started out along their Crohn’s path, can achieve a similar sort of equilibrium sooner rather than later. I’m not naive enough to think I have achieved full closure as we all know that Crohn’s can return when we least expect it.
I was determined to at least attempt a partial closure and to this end set out to write a book based on the story so far. With a “big” birthday nearly upon me it is 99% complete. A few finishing touches and that will be it. The next part of the challenge will be to publish it, another new skillset to learn. Watch this space.
The biggest difference between the year of my diagnosis and the present day is the availability of IBD information. When I was told “you have Crohn’s” it was just something I would have to live with, take drugs for and, if I was unlucky, might end up needing surgery for. That was pretty much it. Nowadays, if you search the web for “Crohn’s Disease” there are over 8,000,000 entries ranging from excellent, well written information sites at the top end of the scale down to the downright dubious ones which are only there to try and sell some miracle cure or diet to desperate sufferers. Then there are all the forums, FB pages and blogs (like this one) where anyone can air their opinions.
I was discussing this subject with my sister-in-law. She asked if I thought I was better off having spent many years in blissful ignorance rather than in information overload. She remarked that I had maintained a positive attitude throughout and thought that it must have helped coping with the disease. My immediate response was “I don’t know”. I can see the arguments from both sides but having given it further thought, on balance, blissful ignorance was probably best for me. Fortunately/unfortunately this is no longer an option.
As ever one train of thought leads to another. For instance, what should the patient expect from their consultant? At initial diagnosis should they be told the worst possible outcome or should all the tests results and procedures to be completed before going that far. I had reason to question this at the end of May 2012 when it was possible that I was (and still may be) suffering from PSC (Primary Sclerosing Cholangitis). To confirm the diagnosis needed a number of scans and biopsies to be carried out but before any of these happened the consultant was talking about needing a liver transplant. You can imagine how I felt, sitting on the edge of my hospital bed, to be confronted with those words. It takes a lot to faze me but even I didn’t knw how to react. Having now had the tests it is possible that I have the beginnings of PSC but nothing definitive. Did I really need to have the threat of a transplant dangled before me? Was it all down to a lack of bedside manner? Can bedside manner be learned? (That would make a good subject for, maybe, a survey).
..and my other question – how should we respond to the newly diagnosed, or waiting to be diagnosed, IBD sufferers on SoMe? Personally I work on the basis of trying to be positive, as I have plenty of positives along with the not so good times. I have seen other respondees jump straight in with tales of multiple operations, months in hospital and relationship break-ups. The FB entry that prompted me to write this piece was from a new sufferer, along the lines – “I’ve got Crohn’s; it will mean having an operation and ending up with a bag; my life is over.” After many supportive comments one person responded with “if it’s a choice between dying or having a bag then I know what I would choose.” To me it seemed so insensitive.
I’m not denying that all these things can happen but should we really burden someone who is just coming to terms that they have the disease with all the potential “baggage” that may, or may not, come with it? After all, we all suffer in different ways; we all cope in different ways; we all survive in different ways.
I would like to know if you think I’ve got this all completely wrong or if you agree. Answers on a tweet to @crohnoid.
It was a quiet year, in fact I’d go so far as saying a very quiet year from a health point of view. That’s why these posts have become less and less frequent. During November, however, my stress levels were rising and not because of the imminent upper GI endoscopy.
One of my clients decided to move office from Central London to Canary Wharf. No staff consultation. It was a fait accompli. In November the move took place. I find the new office soulless, lacking in atmosphere and more importantly, for a Crohn’s sufferer, the bathroom facilities are unpleasant, insufficient for the number of employees and made worse by being often out of order. Oh, and the coffee tastes funny which I can only put down to the water!
…and as for Canary Wharf. I would describe it as a culturally barren, corporate windtunnel, full of expensive food outlets and poncey clothes shops. (Would anyone really buy an outfit comprising a green tweed jacket with pink collar and matching pink moleskin trousers?)
Getting there means relying on either the Docklands Light Railway (bearable) or the Jubilee Line (no seats after 6:30am). In Central London I used to be able to walk to the office from any of the major stations – Victoria, London Bridge or Waterloo – my choice. It meant less stress, more exercise, better chance of weight loss. The only redeeming feature of Docklands are the photo opportunities, as long as you like modern, glass facades and super yachts.
Happy New Year 2016
What better way to start than a visit to the hospital? In this instance it was for a planned, routine, gastro appointment. I had been putting it off until I had the results from an upper GI endoscopy. The scoping was carried out on 14th December and I had emailed the gastro secretary the next day asking if she could arrange an appointment. Bearing in mind we were close to the Christmas break I was expecting a date some time in late February or March at the earliest. I was amazed when 5th January came through. I produced the obligatory list of questions/topics for discussion.
My appointment was booked for 4:00pm but I didn’t make it into the consultation room until gone 5:00pm. My consultant did apologise for the delay. I know that it’s the price you pay for having a consultant that isn’t trying to hurry you out of the door when your ten minutes are up. The large waiting room is a lonely place when you have one of the last appointments of the day.
After exchanging a few pleasantries he asked me how I was feeling. I said generally OK but over Christmas and the New Year both my wife and I had been suffering from some digestive bug that rather put a dampener on the festive season. As we were both suffering the same symptoms I was sure it was nothing to do with Crohn’s. He said that I was the best person to judge if I was having a flare-up. I didn’t agree as I honestly can’t remember what it was like. I’m starting to wonder if I’ve ever had a really bad flare. I have never felt the need to go into hospital as an inpatient to sort one out.
One thing I did not understand – the operation I underwent in 2010 was described by the surgeons as “one of the most complex ever”,” very difficult”, “enjoyable”. If my Crohn’s was that bad how was I surviving at the time. He replied that there was not necessarily a correlation between the complexity of the surgery and the acuteness of the Crohn’s. The operation may have been difficult because of the involvement of other parts of the body. This rang true as one of the surgeons had told me that my intestines were starting to adhere to my back muscles.And so to the list…..
With the Crohn’s still in a quiescent state my main concern was how we should structure an ongoing monitoring regime and set some provisional dates. The last tests/procedures were as follows :
Last Colonoscopy – 25th February 2015. Mild inflammation in colon
Last blood test – 12th August 2015. Low platelets, so no change there then
Last calprotectin test – 12th November 2015. Just over 100 but showing downward trend
Last Upper GI endoscopy – 14th December 2015. No variceal banding required
From the above we were able to set the schedule
Next colonoscopy – February 2017 unless calprotectin gives any concern. “From a bowel cancer monitoring point of view I was getting more frequent screening than the recommended norms.”
Next blood test – at Haematology appointment in May
Next calprotectin test – in time for results to be available for next Gastro appointment. I asked if I should stop taking Omeprazole before the test. “Ideally, yes. It would be a good idea as it can slightly raise the test results.”
Next upper GI endoscopy – December 2016. “This would remain annually and exact timing would be dependent upon whether banding was required or not.”
Next Gastro appointment – I suggested we slipped it to yearly. “Yes. Happy with that on the basis that if you are having problems in the meantime we are always there to assist.”
Bile Acid Malabsorption
I appeared to have it well under control with Loperamide and wondered why other drugs used such as Cholestyramine? No straight answer. If you can control with Loperamide then do so.Are there any implications of BAM on the biliary system? If, under normal circumstances, a large proportion of bile acid is recirculated into the system does a patient with BAM then produce more bile acid to make up the shortfall? If so does this put a greater strain on the biliary system and could affect a condition such as PSC? “The body will produce additional bile acid but no link has been identified with PSC.”
Next B12 injection – 8th January 2016
If you have severe BAM does this also mean that absorption of other vitamins and minerals will be affected to the same degree? If yes then should you have B12 injections more frequently than the usual 3 months? Absorption of vitamins is not confined to the area you had removed. B12 is absorbed in the same area as bile acid. I said that I was having B12 injections at the standard 3 monthly intervals but had not found them as effective recently. “You may want to reduce this to two monthly intervals and see if that helped with tiredness/energy levels.”
Continue with six monthly appointments? See above
Putting something back into IBD community
Having lived with Crohn’s disease for nearly 40 years I was sure that I could help other patients or the IBD community as a whole. As I have been toying with the idea of retiring I should have some time on my hands. That triggered a discussion on the factors I was considering in my decision. I mentioned health issues. He hoped that I wasn’t putting too much emphasis on those issues.The Dept had become a victim of its own success because once a patient had been referred there they frequently asked to transfer their care permanently. He had a number of possible areas where patient representatives could help. I won’t go into them here at present until/if they progress further.
As I was leaving I was asked if I would mind helping out with a research project. I said of course I didn’t mind and was introduced to a medical student who was looking for Crohn’s markers in saliva. I spent the next ten minutes spitting into a phial whilst discussing various aspects of IBD. Someone’s got to do it.I walked back over Westminster Bridge towards the Tube station and it started to rain. Don’t think I would have enjoyed riding a horse in the dark, over the river and with the rush hour traffic just starting to build up.
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………
Have I mentioned before that I am in the process of writing a book? It will explain the route 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.
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.
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.
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.
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.
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.
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.
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.
…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).
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.
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.
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.
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.
Whilst I was having dinner I re-read the colonoscopy report and it struck me that it wasn’t very clear. 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.“
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.
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.
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?
Having read a good number of tweets and forum posts I’ve come to realise my level of ignorance. I wonder how many facts about IBD, that are blindingly obvious to others, have simply passed me by or if the various consultants that I have seen over the years haven’t thought it necessary to discuss because they assumed I already knew them.
You may be surprised at my level of ignorance, as I approach 38 years of coping with Crohn’s, but I have excuses. Firstly, with no internet for many of those years there was little opportunity for sharing experiences and knowledge so easily. Secondly, during the long period when Crohn’s was pretty much under control, I really didn’t need or want to think about it too deeply. Ignorance genuinely was bliss.
There are some things I wish I had discovered/been told about sooner. Forewarned is forearmed. It’s just possible that they might help someone in a similar situation to myself.
What I’d Like To Share (WILTS) and apologies if they are blindingly obvious :
1) We’re all different. Probably the most important thing I have learnt from posts and tweets is that whilst there are some common threads, such as fatigue, it is amazing just how different each of our overall experiences of Crohn’s can be. I knew it could affect any area from mouth to anus but it wasn’t until I had read other patient’s stories that I realised just how debilitating and disruptive it can be both physically and, just as importantly, mentally. My own experience, up until 2009, was that it was unpleasant and annoying but didn’t affect my lifestyle very much. Taking everything into consideration I’ve escaped pretty lightly.
I wasn’t aware that bad fatigue is so common. It’s only in the last few years I have been having B12 injections to try and help with this.
I knew surgery was a possibility but not that some patients would have their complete colon removed……the list goes on…….
WILTS – especially for the newly diagnosed – if you are reading forum posts etc. then please remember that whilst there are some effects we all suffer from – fatigue, for instance – other symptoms or reactions to drugs will be specific to that particular patient and it doesn’t mean you will necessarily experience the same. By the nature of forums people post questions usually when they have a problem, not when they are feeling great. If you keep that in mind then you’ll understand why forums are heavily skewed to the negative end of the scale. I can’t remember how I felt when I was told “you have Crohn’s Disease” but I would imagine that nowadays, for the newly diagnosed, the amount of information on the internet is overwhelming. 2) Stomas. Not something I had even thought about as a possibility. In fact something I didn’t want to think about at all, let alone how to deal with one. Definitely a lot of stigma attached and only something that affected “old people”.
Reality didn’t kick in until I had my first meeting with a Stoma nurse (the lovely Fiona at St.Thomas’) who marked a large, black cross on my abdomen so the surgeon knew the optimal position “if a stoma was required“. At that point I couldn’t ignore it any longer and the doubts began.
After the operation the surgeon’s first word was “Sorry” and I knew when he lifted the blanket what I would see attched to my abdomen. I was so high on all the drugs at that point that I just took it all in without reacting. Over the course of the next few days Fiona showed me what I needed to do to change the bag and built up my confidence for “going solo”. She told me that, at 54, I was one of her older patients. So much for stomas only happen to oldies.
I can’t mention stomas without also mentioning the #Get Your BellyOut campaign. They have really helped with getting stomas out in the open, literally, and lifting some of the stigma attached.
WILTS – the thought of having to have a stoma is a lot worse than the reality. Once you get into the routine of dealing with it, it can give you a lot more confidence going out and about and not having to worry about dashing off to the nearest bathroom IMMEDIATELY. A real life changer in a positive way. If you have any problems (and I had a couple) your stoma nurse will know what to do. Stoma nurses are heroes.
3) Lockdown. Before my elective surgery in October 2010 I had a meeting with the Enhanced Recovery Nurse who she went through the pre and post operative phases in great detail – what I should expect, timescales etc. The one thing that wasn’t mentioned was “lockdown”. At least that’s what the surgeon called it. The medical term is “gastric statis” or “post operative ileus”.
After both the ileostomy and reversal operations my digestive system stopped working and I suffered very bad nausea and hiccups. I hadn’t realised just how low nausea can make you feel. It wasn’t until the surgeon was doing his weekly “follow-up” round that he explained it was normal in approximately 25% of patients and it would eventually pass. I wish I had been forewarned so at least I would have known why I felt so bad straightaway rather than wait a few days before having it explained.
WILTS – if you end up having surgery for your Crohn’s (and it is by no means certain that you will) then you may be one of the unlucky 25% to suffer from this “lockdown”. It is unpleasant, very unpleasant, but it’s made a lot easier if you know why you feel bad and that you are not the first to have suffered it. The preferred option is to let natue run its course but there ae things that can be done to try an alleviate the problem. One way or another the feeling WILL pass and your appetite WILL return.
4) BAM – Bile Acid Malabsorption. I’m probably starting to sound like a cracked record on this one (see several other posts). It does appear to be a condition that should be far more widely known about and discussed. After I had my stoma reversed I couldn’t understand why I still needed to take Loperamide capsules to regulate output. I had assumed, wrongly in my case, that reversal meant the digestive system returned to normal. Every so often I would get a bout of the runs and my first thought was it must be the beginning of a Crohn’s flare; mayve I’ve eaten something that diasgreed with me; or could I have picked up a virus? I asked my consultant about it a couple of times and he mentioned something to do with absorption. As an extra capsule of Loperamide would quickly bring it under control I took it no further.
I mentioned it to him again earlier in 2014 and he decided to book a SeHCAT test. The result came back – severe Bile Acid Malabsorption. Having now got the proper term for the problem I was able to look it up and understand what was going wrong. I’ve explained it in another posts so won’t cover old ground here.
WILTS – if you have had surgery that involved removing your terminal ileum then, from what I have read, it is highly likely you will suffer from BAM and unless you are taking medication to combat it, or its side effects, you will be making frequent bathroom dashes. If you haven’t discussed it with your consultant then ask the question. The SeHCAT test is simple and painless.
Starting with a blank piece of paper I put down the most important things I require and, where applicable, what I consider to be acceptable timescales. I concentrated on my needs as a hospital outpatient with a chronic illness/multiple chronic conditions because this is a situation of which I have recent, first hand knowledge. (I’ve excluded GP’s, as I very rarely see them, and I’m hoping that hospital stays are few and far between).
Before reading the list below you might like to have a go yourself and then see where we agree or what additional items you’ve come up with. I’ve ended up with 12 key items. Here they are, in no particular order :
Easy to book appointments/tests/procedures and carried out within a reasonable or appropriate time frame (4 weeks)
Consultants that make you feel welcome and are prepared to spend sufficient time to answer your questions
Consultants who communicate at the appropriate level of detail. (Communication includes the ability to listen and “hear” what is being said)
Consultants who take joint decisions with the patient. (You are the expert in YOUR health, they are the experts in their chosen fields and provide the knowledge to inform decisions)
Good co-ordination between multiple consultants if more than one condition is being managed and a named lead consultant
Ability to make suggestions to / ask questions of / get responses from consultants by email
Follow-up letters sent out promptly
Test results communicated promptly (or appointments organised to go through results as soon as they are available)
Appointments that start on time or if they are delayed good communication as to why they are running late and the likely delay
Provision of a disease/condition specific help line with prompt response time (within 24 hours)
Routine appointments over the ‘phone or by Skype (to save on hospital trips and consultant’s time)
Electronic, transferable, whole life health records with electronic patient access
11) and 12) are more long term aims and probably the remit of the NHS as a whole rather than an individual hospital. If there are any blindingly obvious omissions please let me know. You can tweet me at @crohnoid
My original list (now slightly modified)
…and how does my treatment measure up?
St.Thomas’ new Outpatients’ Department
Having established the list (and the two aspirations) I thought I’d see how my current treatment measures up against each of them.
1) Appointments are easy to book either on the ‘phone or in person. Not all departments are consistent in their approach to routine, six monthly appointments. Some give you the appointment letter there and then; others won’t book further than six weeks ahead so I always make a note in my calendar of when I need to make sure I’m on the six week radar. So far (in three years) I haven’t had any problems. The longest wait of all was getting a slot to see the Dietician – but I was warned that the demand on that Department is particularly heavy and, for me, it’s not exactly a matter of life and death.
2), 3) and 4) The communication with the various consultants has always been excellent. I’ve never felt I’m being hurried out the door. We always have a full and frank discussion at a level of detail I can cope with.
5) Co-ordination works well. Letters and emails are always copied between the three main consultants and there is a MDM (Multi Disciplinary Meeting) were patients with multiple conditions are discussed.
6) I’ve always received prompt responses to my emails. If I have a question that I think may have implications across disciplines then I copy it accordingly.
7) I did have one particular issue with follow-up letters from one particular department but a simple email to the Head of Department sorted that out. It’s all resolved now and we’re back on track.
8) OK so far.
9) Mostly pretty good. My last Haematology appointment started 15 minutes early! There have been occasions where the clinics are running late but nobody kept the patient patients informed. The new Outpatients Dept. at St.Thomas’ has large screens all around the waiting area and these carry messages if any clinics are running more than 30 minutes late.
10) I’ve only had reason to contact the IBD and Stoma helplines. Both have replied very quickly. When I had a problem with my stoma I was able to go and see one of the nurses that lunchtime.
11) This is more an aspiration than something I think will happen in the very near future. I don’t know at what level the decision can be taken to implement it – individual consultant; Department; Hospital Trust; or from the NHS on high.
12) I thought this was going to happen a few years back but the plan faltered rather badly (NHSIT Project). The system works within the Guys/St.Thomas’ (GSTT) itself but they do not have access to my previous records. I’ve taken it upon myself to collate this information but don’t know if there is any opportunity for getting the key records added to my GSTT file. (Something to ask at my next appointment)
I’m very impressed with the treatment I receive from the NHS at GSTT. If I had to give them a score, judged on the first ten items, it would be 9 out of 10. I have had the odd hiccup along the way but by taking an active role in managing my treatment they have quickly been sorted out and never caused a problem.