Category Archives: Crohn’s Disease

A Patient’s Dilemma(s)

When 10th October 2018 comes round I’ll have reached the 8th anniversary of my ileostomy. When I left hospital I had learnt two things about potential future surgery – the average time between operations for Crohn’s patients is 10 years; recovery time is improved by the fitness and weight of the patient but increases with age. Based on these two principles I set myself  the target of boosting my exercise and reducing my weight to around 80kg so that should I need to go under the knife again then I was in the best possible state for a speedy recovery.

Having taken the decision to retire early the exercise is mainly physical work around the garden, mucking out stables and taking long walks photographing London (when the opportunity arises). I’ve been achieving my targets and feeling “very well”. There have been a few “blips” along the way but these would come under the heading of EIMs (Extra Intestinal Manifestations – see previous posts). I’ll stick with “very well” from a Crohn’s point of view.

…and then a few weeks ago the unplanned visits to the bathroom started again. They had been happening sporadically over the 8 years, lasting a day or so on each occasion. so at first I wasn’t concerned about the latest occurrence but when it  reached the third day, without any improvement, it was time to take action. I emailed my gastro consultant to ask his advice. “Ask your GP surgery if they can carry out stool cultures to look for possible infections and C diff” was the reply. Yes, my surgery could do the necessary tests upon receipt of a fax!!! from St.Thomas’. (A fax? How last century. What’s wrong with an email?)

I went and saw a GP who suggested increasing the Loperamide to the maximum I’m prescribed – 12 daily. After a further couple of days everything returned to normal. When I went to collect the test results they were negative so, as usual, nothing to explain the problem. However one of the GP’s receptionists commented that she hadn’t seen me for a while and thought I didn’t look well. She suggested I should see a GP again. There was a slot that afternoon and after discussing my case  I suggested that a blood test might be a good idea (having not had one for over a year).

When the results came back there were no real surprises except for my Hb which was 112. When I checked my previous results I had been around this level for 2 years. To me it seems low and the Ferrous Fumarate I have been taking for many years has had no effect. (Is it not supposed to be a short erm measure to correct an imbalance?`) I had mentioned it before to both my consultants and GP and it did not seem to cause them any great concern.

Call it serendipity but I just happened to see a conversation on Twitter between an eminent Professor (who specialises in iron deficiency) and one of the BBC health programme presenters that tend to dumb down health issues for the masses. His point was that simply taking iron supplements was not the solution to the deficiency. I joined the conversation and mentioned my particular issues. I got a prompt and unequivocal reply – “You, sir, need treatment”.

…and so to my dilemma(s). How much store can be put in my feeling well and being able to carry out any activities I wish to undertake? Do I really want to undergo another range of tests in an attempt to explain, for instance, my calprotectin level of 1300? I’ve already been through  multiple colonoscopies, biopsies and scans – all showing no evidence of the Crohn’s having restarted. Is “do nothing” a viable option or would such a “pathway” not even be contemplated in some institutions? Do I want to start taking a new drug treatment for my Crohn’s just in case it is becoming active? The standard treatment would have been a maintenance dose of Azathioprine but that has already attacked my bone marrow and caused my platelets to plummet. The most likely choice would now be one of the biologics with the possibility of going through a long trial and error process until the right one is found.

…and my final dilemma is how to broach the subject of opinions I have read on Twitter, not even some medical web page, without giving the impression that I do not trust my present treatment.

Suggestions in the comments box please or on Twitter @crohnoid

The Importance of Follow-up Letters

Follow-up letters from appointments are an important part of your health records. They should contain what was discussed with your consultant, any conclusions arrived at or changes in medication etc. By default Guy’s and St.Thomas’ write to your GP after each appointment and copy in the patient under cover of a note that states “this is primarily a communication between medical professionals” (which I think is another way of saying “you probably won’t understand all the words we use”).

Now it has to be said that not all Departments stick to the “default” and I have had a couple of occasions (both with the same department) where the lack of letters caused issues. This is where my blog posts recording the latest appointment have proved more than just an exercise in self indulgence and why I read them prior to my next hospital visit.

The first time this happened was in March 2013 when I attended a regular appointment and was greeted by a doctor I hadn’t met before. We went into one of the side rooms where my notes were open on the desk. He introduced himself and said that he had been reading the notes to familiarise himself with my case. I had been hoping to see my usual consultant as I liked continuity and had issues with the lack of follow-up letters that I needed to raise with them. Unfortunately they were unavailable for that day’s clinic.

The new doctor said that, having read my notes, it was apparent that the condition I was suffering from was rare and started to discuss my low platelets. He noted that I had last been seen in October 2012. I stopped him in his tracks and said this was a clear reason why up-to-date notes and follow-up letters were so vital. There had been two further appointments since October and the platelet issue had been “parked”. A new, far more serious, condition had arisen – PVT (Portal Vein Thrombosis). This was now the priority.

I explained that this was an important appointment for me as I was expecting to run through my risk profile and at the end of it make the decision on whether to start blood thinners. My regular consultant had said they would discuss my case with th Department’s Warfarin expert, one of the professors.

At that point I started to think that this was all going to end up badly. I needed to kick start a reaction so I asked whether the professor was in the unit that day and what I needed to do to see her. Clearly this was never going to happen but it was worth a try! The doctor said that he would see if he could speak to my original consultant.

A few minutes later he returned with another consultant. I recognised her name as my clinic letters always stated that I was under her ultimate care. Putting two and two together she must have been the next one up the food chain from the doctor I usually saw. I went back over my expectations from this consultation. She explained that she worked closely with the “Warfarin Professor” and they jointly reviewed patients.

She ran through the risk factors and having looked at my notes and results, on balance, she would not recommend Warfarin yet. As far I was concerned it was the “right” answer. If there was a low risk of clotting then I was prepared to take that risk to avoid having starting yet another medication. Decision made, no Warfarin.

A month later I was still awaiting the missing follow-up letters. Time for some further action. I sent an email to the head of department (whose address I found on their web page). I apologised for contacting her directly but explained that raising the issue in clinic was having no effect. I added: “I thought it was therefore best to go straight to the top so that you can delegate any necessary actions…….” and briefly explained what had happened at my last appointment.
I hit the send button and got a very prompt response, 20 minutes later, apologising and saying it would be looked into.

The four missing letters arrived shortly afterwards, with an apology. I checked their contents against my blog and they were accurate records of the appointments.

From the above I’d like to pass on two thoughts : 1) that keeping your own record  is important and can prevent a waste of your time and a waste of NHS resources going over old issues that are already “parked”; 2) if you are having a problem with getting follow-up letters then go to the top and ask for their help. I have found those four little words “can you help me?” have opened up many situations whilst negotiating the pathway s through the NHS.

(I’ll leave the account of the second missing letter issue for another time. Suffice to say that I could have ended up having a third bone marrow biopsy! Not something I would recommend)

Gallbladder Surgery? It’s Not That Simple In Your Case

My second outpatient trip to London in a week and, unlike Wednesday, a beautiful clear morning without a cloud in the sky. I needed to be at St.Thomas’ by 9:00 to see a surgeon about having my gallbladder removed. It was an early start and my first waking thought was to wonder if eating a complete can of baked beans for dinner the night before had been such a good preparation for a journey on public transport. Hopefully a couple of extra Loperamide would do the trick.

It wasn’t until I parked my car near the station that I remembered where my mobile ‘phone was – on the dining room table. Was this going to be a liberating or frustrating experience? How was I going to let my wife know what the surgeon had said? How was I going to let my brunch companion know where and when we should meet? (At least I had my camera with me).

Having spent the train journey pondering this dilemma I arrived at St.Thomas’ outpatients’ department without having reviewed my list of questions or the copies of the ultrasound scans and follow-up letters I took with me. After a few minutes my name appeared on the laser display board and I made my way to the room indicated.

St.Thomas’ Hospital – opposite the Houses of Parliament

I had been expecting to meet the surgeon himself but was met by his registrar. I explained to her that I really wanted to see the surgeon and she said she would ensure I could spend a few minutes with him before I left. She started to go through my medical history. To speed up the process I produced a copy of the diagram I had drawn showing the key points in 40 years of Crohn’s and its companions. She was very impressed and no doubt I started beaming like a Cheshire cat. That soon stopped with the next set of questions.

40 Years of Medical History – on a page

I thought I was there to discuss whether surgery was a good idea, or not, and the possible complications. She was clearly running through the standard pre-operative assessment checklist – “Are you mobile? Can you wash and dress yourself? Can you manage household chores on your own?” I answered “Yes” to all the above but of course the answer to the last one was “No, I can’t. That’s why I got married”  (I’m joking!). I told her that my preferred option was no surgery until absolutely necessary as it would be too disruptive at present.

We then started to discuss my medical history in detail. She examined my abdomen and complimented me on the quality of my scars. At this point it was obvious that surgery wasn’t going to be simple. She went off to see if the surgeon was available, taking the diagram with her. I think they must have then discussed its contents as about 10 minutes later they both returned and the surgeon introduced himself. He also liked my diagram and quickly ran through the key points.

He asked me to describe the circumstances that led up to me being there. I recounted the incident of violent shivering and turning yellow that occured at the end of January. He asked if I felt any pain (everyone has asked that one) and I was able to say I felt nothing at all. From that he concluded that a small gallstone must have temporarily lodged in my bile duct, long enough to cause the symptoms, and then quickly passed through before the pain started.

I went through the discussions I had had at my local hospital (East Surrey) and their suggestion that I needed to be seen by a specialist liver unit. I wondered why one of their concerns was liver cirrhosis? He replied that whenever a patient appears with esophageal varices / portal hypertension / portal vein thrombosis then it would be assumed that liver cirrhosis was the most likely cause. My latest Fibroscan result was 7.8 suggesting that cirrhosis was at a low level. I explained the hepatologist’s theory that the PVT had been caused by peritonitis following perforated bowel surgery in 1979. He thought this was very feasible.

Usually gallbladder removal is a same day operation using keyhole surgery. In my case it would be a lot more complicated. He noted my wish to delay surgery for as long as possible and was minded to agree with me. He wanted to present my case to their departmental review meeting to get other opinions. In the meantime they would arrange for me to have an MRCP scan (magnetic resonance cholangiopancreatography), a targetted MRI scan that looks at the biliary and pancreatic ducts. This would determine if any other gallstones were lodged in the bile duct. He asked me to book a further appointment for 6 weeks time so we could discuss the results and the meeting’s conclusions.

I had some final questions :

Will a cholecystectomy make my bile acid malabsorption worse? “We simply don’t know”.

Am I likely to suffer from post operative ileus (lockdown)? “Possibly”.

If we leave surgery until it is absolutely necessary what could the consequences be? “Anything from pain to having to prepare one’s relatives for bad news”.

Timescales for elective surgery? “Surgery would be carried out in the specialist Liver Unit at Kings College Hospital so the timescales would depend on their waiting list”.

I left any further surgical questions for our next meeting. His final action was to introduce me to their senior nurse co-ordinator who acted as a single point of contact for their patients. If I had any questions or concerns then I should call or email him.

….and my ‘phone predicament? Don’t bother with BT public telephone boxes – they take your money and then don’t work. When I arrived at St.Thomas’ I explained my problem to a very helpful guy behind the Patient Transport desk who allowed me to use his extension to make the necessary calls after my appointment.

….and so to brunch.

Next appointment – Friday 10th November

What influences your attitude to your health?

Do you think that the job you do influences the attitude you adopt to your health condition(s)?

For the last 35 years, or so, I’ve been planning things. Think party planning but without the sex, drugs and rock’n’roll. To be precise I’ve been planning a whole range of projects ranging from construction jobs, offshore wind farms, defence contracts and the mega Channel Tunnel. The last few years were spent planning the major upgrade to the London Undergound system allowing the introduction of the air-conditioned, walk-through trains on the District, Circle and Metropolitan Lines. (If you use them I hope you enjoy the experience).

 

The job has been challenging, especially when tackling new areas as you need to quickly learn a myriad of acronyms, technical terms and understand the new processes needed to deliver a successful outcome. The standard planning tool is the bar chart, or Gantt chart to give it its fancy name, but the key is always communication. That’s where my love of diagrams comes from. If you can encapsulate on a single page the message you are trying to get across it is so much easier for others to understand than reading reams of words.

 

After many quiet “health” years everything stepped up a gear
in 2010 and over the course of the next 24 months I was faced with multiple outpatient appointments, procedures and a growing number of health conditions. It dawned on me that my health could be considered a “project” and the techniques I had been using for years could be effectively employed to manage it. The follow-up letters or medical reports often contained acronyms or very long, very unfamiliar medical terms and when I obtained copies of all my medical records I reached information overload.

 

The “project” approach (and starting a blog) has enabled me to become very objective about health issues. I see my consultants/NHS as a set of expert resources that will help to achieve a successful outcome. But, of course, there lies a problem. What is a successful outcome? For a conventional project there is a clearly defined point at which it can be declared finished but for a chronic condition, such as Crohn’s, there is at present no end in sight. That makes me uneasy as I’m used to completing a project and then moving on to the next one. (My wife would not agree when it comes to home DIY but that’s just a man thing).

 

Maybe this isn’t just a chronic illness issue but also age related. When you reach a certain point in your life mortality surfaces as an issue. You start to realise that there’s more behind you than in front. If you’re an actuary then you may have already calculated when your use of the term “midlife crisis” is valid. For the rest of us, without access to the actuarial tables, we can only guess and ask our consultants that question that they can’t answer – “is it Crohn’s that will finish me off or is there an even bigger elephant in the room?”

 

Returning to the original question – do you think your job influences your attitude? Maybe I’ve got this completely the wrong way round and the question should be – do you think your attitude to life and your condition influences the job that you do?

Top Trumps

The last blog was triggered by spotting an “I’m grateful for my IBD” post, this one is about another trend I’ve noticed – “Illness Top Trumps” or “my illness/condition is worse than yours”.

It’s played over SoMe, especially on Facebook forums. The “game” usually starts with a post along the lines of “IBS is worse than IBD” or “Ulcerative Colitis is worse than Crohn’s disease”. The ensuing discussions rapidly become very heated, abusive and always completely miss the point that two patients may have been diagnosed with a disease but experience its effects in vastly different ways. It’s QOL (Quality of Life) that matters. How much does the condition prevent you from living a “normal” life? Has it caused you any psychological issues?

The diversity of paths that each of us travels was made clear recently with the Twitter hashtag #MyIBDHistory. A friend of mine (and soon to be fellow blogger – @bottomline_ibd) had this great idea (whilst idly daydreaming on a roasting hot afternoon) – could she condense her IBD history into just one tweet of 280 characters? Having succeeded she decided to release it on Twitter as the “#MyIBDHistory Tag Challenge”. Over 1,000,000 impressions later it has really taken off and resulted in many IBDers taking the challenge and posting their potted history.

The histories make fascinating reading and it’s very humbling when you realise just what some of the respondees have gone through, or are in the process of going through, under the catch-all umbrella of IBD. Each person has presented their story in a slightly different style and what has beem particularly gratifying is that the responses from others have been very supportive without a hint of oneupmanship.

There have also been positive reactions from HCPs who have also found the Tweets inspirational and informative. If you get a chance they are well worth a look. Personally I realised that despite having Crohn’s Disease for many years I have escaped lightly and for many years my QOL has been virtually unaffected.

There is another variation on Top Trumps based around “what I’ve got is so unusual that I’m very special”. These do not usually descend into conflict as who wants to argue with a special one?  (unless it’s Jose Mourinho). There’s a corollary to this – EIMs (Extraintestinal Manifestations). These may potentially have a far worse effect on QOL than the original disease. An EIM, taken in isolation, may be a relatively common issue but many patients will suffer from more, sometimes many more, than one EIM. By looking at their WHP (Whole Health Picture) the combination of multiple EIMs, together with the original disease, may add up to them also being “special”. If you would like to see an example then visit this link – http://www.wrestlingtheoctopus.com/the-jigsaw-diagram.

Confession time –  I have to admit that I’m not squeaky clean when it comes to oneupmanship. I have mentioned my surgery from 2010 many times (what do you expect from a Crohn’s patient blog) but haven’t been able to stop myself from quoting the surgeon who said it was “one of the most complex operations” that they had ever undertaken. There, I’ve done it again. I’ve tried analysing why I feel the need to mention this piece of information and why it is one of the few aspects of Crohn’s that makes me emotional. At first I thought it was a case of Surgical Top Trumps – “my operation was more difficult than your operation” but I’ve thought about it very long and hard and concluded it’s my sheer awe and surprise that a body and mind, my body and mind, could undergo such an ordeal, come out the other side, survive and thrive.

 

Grateful?

Every so often a post or podcast appears along the lines of “Why I’m grateful for my IBD” and every time I see those words I wince a little. Am I swimming against the tide? Am I the odd one out here? There is not one aspect of this disease (or its EIMs) for which I have any sense of gratitude.  I’m not doubting  those who are “grateful”. I can understand that,  just like IBD itself,  there are many “flavours” of coping mechanism and if it works for them then fine.

I’m not denying that I have met some fantastic people from the IBD Community, both online and in person, but then I’ve also done the same through work and hobbies….and I haven’t needed IBD to give my life direction, focus or convince myself I have staying power.

Having said I’m not at all grateful I quickly need to counter that by saying neither am I resentful or regretful. The worse thing I could do is get into an “if only” mindset ie. “if only I didn’t have IBD I could have….”. I have thought long and hard about this subject and made my peace. I can’t think of many things worse for one’s health/mental health than living a life of regrets.

Have I always taken this attitude? The honest answer is “I don’t know. I can’t remember“. My medical memory was reset around 2009 and before that I can recall very little. I have now managed to fill in the physical events with the help of a medical records, photo library and my wife’s amazing memory for dates. I cannot do the same for my emotions or feelings apart from knowing I was sh*t scared of going under the knife but I don’t think I had any bitterness at having Crohn’s.

When surgery became inevitable in 2009 my emotions could have gone in one of two directions. I  would have understood if i had become very anxious, given my attitude to surgery, but instead I went into a very relaxed, laid back mode. I’ve manage to maintain it ever since. Clearly a prolonged period of remission has helped but a couple of serious EIMs could have derailed it.

IBD has certainly taught me a lot both about the disease itself and ways of living a relatively normal life despite of the everyday issues that it raises….but “grateful”? Definitely not.

The Red Stuff

Friday 12th November 2010

At about a quarter past six I noticed that I appeared to be losing blood. I went off to the bathroom to investigate and found that he contents of my pouch had turned bright red. My immediate thought was that something had come apart internally and that I needed to get urgent medical attention. The level in the pouch was visibly increasing but not filling so fast that I would need to change it for a while.

My wife was already outside feeding the ponies so I went to explain to her and told her that I had a problem. I needed to get to hospital quickly. Knowing it was a Friday night and that A&E (Accident and Emergency) was likely to be busy we decided to call 999 rather than trying to organise a lift down there. I rang our neighbour to warn her what was happening and ask her to come and let the dogs out and give the ponies their late night haynets. We had no idea how long I’d be down at the hospital.

The ambulance turned up very quickly. Seven minutes from call to arrival. Once onboard the crew went through a series of tests and then we were off. No siren or blue lights. It wasn’t a very good ride in the back of the ambulance as they sway a lot and the country lanes around where we live are very twisty.

We arrived at East Surrey Hospital A&E at just after 7:15pm. One of the crew said: “we’re taking you into the Rapid Assessment Unit but don’t be fooled by the title”. His scepticism was unfounded and within 10 minutes I was laying on a bed having more tests and a cannula being inserted into my arm. I was then taken to the MAU (Medical Assessment Unit) but they were full so we had to wait in the corridor. This was probably the worst part of the experience because you couldn’t see what progress was being made in clearing the queue. I’m not sure what time I was actually wheeled into the Unit but it was probably around half past nine.

I was seen by one of the doctors and we went through my medical history and I explained what the current problem was. I got the distinct feeling that he wasn’t keen to explore my stoma himself and didn’t even suggest that we remove the bag to get a better look at it. He went off to ring one of the surgeons to see what should be done. At this point a friendly porter appeared to take me down for chest and abdominal x-rays. He remarked how busy they were and that it hadn’t been this bad since July. Surprisingly enough Friday and Saturday are not usually their busiest nights.

With the x-rays complete I was wheeled back to the MAU and it looked like I had missed my place in the queue. I was told that the plan was for me to be taken to the SAU (Surgical Assessment Unit). In the meantime the doctor came back and said that he needed to take an arterial blood sample which would probably take a couple of goes and would be very painful! Thanks for the warning. I needn’t have worried as he hit the artery first time and I had become very used to having needles, of varying lengths, stuck in me.

Rather than call for another porter the sister wheeled me down to the SAU herself. I was told that the doctor knew I was there and would be along to see me. It was now about 11:00pm and I’d still not seen anybody so my wife went to find out what was going on. The doctor was seeing another patient but would be with me shortly. A few minutes later she appeared and apologised that it would be necessary to ask me all the questions again. I had remembered to bring a copy of the discharge letter from St.Thomas’ which explained what the surgeon had done. As we had been unable to understand it completely, due to the long, medical terms, the doctor gave us a translation.

As she specialised in surgical cases she had no fear of removing the pouch. She then examined my stoma, inside and out, and came to the conclusion that the bleeding was external but I was right to have come down to the hospital. I asked her if she was considering giving me a blood transfusion but she said that unless my blood count was getting worse she was happy for me to be discharged. She did give me the option of staying in overnight if I was concerned but I decided that I would be OK. Other patients needs would be far greater than mine.

There was a short wait whilst the nurse removed the cannula and then I could get dressed. I rang my sister who very kindly came out and picked us up. We were home just gone one o’clock. Not what we had planned for our Friday evening. I was famished as I hadn’t eaten or drunk anything since 5:30pm. I grabbed some toast and a coffee and then went to sleep sitting up on the sofa.

What went wrong

When I saw the stoma nurse the following day she gave me a thorough examination and announced that I had developed an abscess below the stoma which I had not been able to see. The abscess had burst but “luckily” the blood had made its way into the pouch not my clothing.

…and another thing

A chance to combine the World Cup, gardening, Crohn’s Disease and colorectal surgery all in one post or maybe just a chance to do some navel gazing.

With the World Cup upon us once more my memory has been drifting back to when it was held in South Africa eight years ago and the situation I found myself in at the time.. A couple of posts ago I wrote about things I don’t/didn’t know about IBD and my unsated curiosity.  Here’s some other things that I’m curious about, bear with me.

In 2010 I knew I was heading for surgery. The pain in my abdomen/back was stopping me from getting a good night’s sleep. In May my consultant told me to expect  to go under the knife within 4 weeks at our local hospital. Preparations to get my life in order went into overdrive only to come to an abrupt halt when my wife and I were invited to attend an impromtu MDM with my consultant, his boss and their colorectal surgeon. The upshot was that the operation, or more specifically the recovery, was too complex for them to contemplate. They were referring me to St.Thomas’ in Westminster. You can imagine it was a bit of a bombshell.

A meeting with the surgeon at St.Thomas’ resulted in the date for the operation being set for the second week in October. (It couldn’t be September as he always went on holiday for the month!)

Strangely I started to feel a lot better and the pain improved greatly. I decided that one of the projects that had been on hold could go ahead – the construction of a pergola. It may not  sound very exciting  but it was quite a challenging piece of work, especially for someone about to undergo surgery.

Having designed the structure, ordered and collected the timber I spent many happy days and evenings digging the holes, cutting the joints and assembling the structure. It helped take my mind off the forthcoming operation. Although it was physical work it was also relaxing and, of course, tiring. Getting to sleep was not a problem.

A few daysafter starting….

The finished job

My constant companion throughout that period was the World Cup on the radio so when I heard the opening match between Russia and Saudi Arabia today (14th June) I was  immediately transported back to that hot summer, balmy evenings and re-ignited the questions…

In 2010 my guts were in a pretty bad way  – there were loops, fistulas and, probably most worryingly, my intestines had started to attach themselves to my back muscles (hence the back pain) and to vital organs.

One of the surgeons very kindly drew this diagram for me

The questions : If I was in such a bad way how did I manage to complete a physically demanding project. How much longer could I have continued without the “elective” surgery becoming “emergency” surgery. It was five months from when I had expected to have surgery to actually entering the operating theatre. It seems like a long time to wait.

I know I will never get an answer to my musings but once again curiosity is getting the better of me. I’ll just keep them on my lengthening list of “nice to knows“. Tune in next week for some more navel gazing (I’d like to commend the skill of the surgical team for still having a navel to gaze at.)

 

The Difficult Patient

I like to think that I’m a good patient. I very rarely forget to take my medication; I always turn up for appointments; I try to enter the consulting room with a positive attitude and clutching a list of questions.

…but I’m also a difficult patient. I think it’s true of any IBD patient that we are “difficult” because it is likely that on first presentation to our GP our symptoms could have a number of possible explanations. At least more doctors are becoming aware of IBD as an avenue for investigation. It took 8 months for my positive diagnosis of Crohn’s disease, via “nerves” and “spastic colon” along the way.

The difficulty continued. My platelet count dropped dramatically (thrombocytopenia). The most likely explanation? “It was the azathioprine.” So I stopped the azathioprine, my platelets showed no improvement and I ended up having surgery to remove a stricture.

Azathioprine is known to potentially affect the blood which is why we should have regular blood tests when taking it. Although my platelet count was around the 70 mark (usual range 150 – 400), I was asymptomatic. If I cut myself I didn’t bleed any more than usual and after several visits to see the haematologist it was decided to park the issue as it wasn’t affecting any other treatment. I had been in remission and Crohn’s drug free since surgery.

But what if the Crohn’s started to flare again and my gastro consultant decided the best treatment would be to restart the Aza? I put this to him and he agreed that we should un-park the question and try to find out whether the drug was to blame.

Off to see the haematologist again and two bone marrow biopsies later it was decided that Aza was the probably the guilty party, had attacked my bone marrow which in turn suppressed platelet production. (…..not everyone agrees)

The second “difficulty” was when I started vomiting blood, an incident that I have mentioned many times before. Into our local A&E and then admitted as an in-patient. The consultants there were expecting to find an ulcer. To confirm their suspicions they shoved a camera down my throat and were surprised to find esophageal varices. A simple-to-treat ulcer was actually something a lot more sinister.

One ultrasound scan later and it was identified as portal vein thrombosis. Time to pass me back into the care of my usual hospital. Treatment would involve both a hepatologist and haematologist. At my first meeting with the hepatologist I asked what could have caused the blood clot in my portal vein. He said that the most likely explanation was that it resulted from peritonitis brought on by a perforated bowel over 30 years previously. I have to admit I still struggle with this explanation. Why did it take 30 years to come to a head? Result – beta blockers and proton pump inhibitors.

The haematologist suggested that I started taking blood thinners to combat the threat of further blood clots. I really didn’t want to take any more medication than strictly necessary so we did a risk analysis and concluded that it was 50/50 for and against. Result – no warfarin. Another issue successfully parked.

Then came the jaundice as a result of gallstones. I met with upper GI surgeons at both my local and Kings College hospitals. The usual treatment would be to whip out my gallbladder using keyhole surgery but, of course, my case is not so simple. Previous laparotomies have left scar tissue and adhesions that would preclude a keyhole operation. Then an MRCP scan showed that the varices, that had grown down my throat, had also grown around my gallbladder.  Aaah!

What have we concluded? The choices are to operate now to prevent a problem in the future “that might never happen” or to postpone the decision and review again in 6 months time. He was minded to go with this second option. I wholeheartedly agreed with him.

…and finally there’s the little matter of conflicting test results. As it was the subject of my last post I don’t intend to repeat it here but it leaves me with questions. Is the “wait and watch, let’s park that issue” a valid strategy or best option in this instance. If I asked for further investigations to be done would I simply be using up valuable NHS resources carrying out tests that might make no difference to, or even worsen, my QOL? Would it even be clear which further tests could be carried out? As I said in that previous post, curiosity is getting the better of me but I’m not going to lose any sleep over it. That’s one of the advantages of writing a blog. You can get all your thoughts down in one place and then, you guessed it, park them.

Maybe there are no clear cut answers but I’m starting to feel that my “difficult patient” status can only get worse as the ageing process kicks in. Oh for a simple life.

IBD Knowledge and Curiosity

They say with age comes wisdom. I fear I am the exception to that rule. What doesn’t come with age is knowledge. I proved this by spending the first 20 years from my Crohn’s diagnosis knowing very little about the condition. You could sum it up as : nobody knows what causes it; it’s incurable; you take steroids to keep it under control and get on with life; not many people have heard of it.

In 1998 there was the first mention of possible surgery to remove a stricture. I now needed to know what “stricture” meant and its implications. I started to take a little more interest but once I was safely weaned onto an immunosuppressant, and back to some sort of equilibrium, then my interest waned and life quickly returned to “normal”.

Another decade passed and then a routine blood test showed my platelets were dropping. As this was a known side effect of the immunosuppressants they were stopped.

In May 2009 a CT scan painted a complicated picture of both ileal disease and the suspicion that I was fistulating into other parts of the small bowel, possibly the sigmoid. My consultant put it in simple terms: “It looks like you’ve got an octopus in there”.

Fistula? I had no idea what that meant. It certainly sounded somewhat unsavoury. I started, again, to resign myself to surgery. After a brief, expensive, unsuccessful flirtation with Infliximab, the knife became inevitable.

As it approached I was confronted with new medical terms and there would be new skills to learn, for instance changing a stoma bag, but the knowledge I sought was still confined to my immediate needs.

Some of the basic information, that I’m assuming (hoping) newly Dx’d patients nowadays take for granted, had sadly passed me by. It wasn’t until 2012 that this was remedied by a couple of things, the first being my increased awareness of SoMe which lead to reading other patient’s stories. The second started a little more dramatically.

In mid-2012 I was rushed into our local hospital leaking upper GI blood. Once stabilised, given my history of Crohn’s, I was placed on the gastro ward. It was an eye opener. There were patients there who had admitted themselves as they were having a flare-up! Really? That was new to me. I had never even considered doing that. Could things really get that bad?

I became reacquainted with my old IBD Nurse who, sadly, had returned to being “just” a ward sister as she wanted to reclaim her private life. One quiet afternoon she sat on the end of my bed and we started chatting about Crohn’s disease.

She was surprised at my lack of knowledge and quickly realised that nobody had ever talked me through the basics. It was assumed that someone who had experienced the condition for so long must know all about it by now. I was guilty of this assumption myself as I knew no better. Our conversation was a wake up call to become better informed. Now my curiosity was awakened.

Six years on my curiosity is stronger than ever but I’ve hit a bit of a brick wall. It’s been the subject of previous posts and many, probably too many, Tweets. Although I’ve been in remission for several years I still undergo regular monitoring and this is where the problem lies. As usual I’ve drawn a diagram that represents my take on the situation..My case has been discussed at the Multi Disciplinary Meeting of one of the country’s leading gastro teams and the conclusions were : the colonoscopy findings outweigh the MRI findings in the colon. The small bowel was reassuringly uninflamed. There is no explanation for the raised calprotectin in terms of Crohn’s disease. Watch and wait.

From a health point of view I’m happy to “watch and wait” but my curiosity is sufficiently piqued that I would like find a logical explanation. It’s difficult to know what to do next. I’m rather hoping that by putting the details of my case out into the big world of SoMe it might just strike a chord with somebody – a fellow patient, an HCP or even a testing lab – and they will be able to point me towards a solution. Until then I have a feeling I will be returning to this subject on a regular basis.