Category Archives: stricture

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.

 

Next steps

This is the follow-up post to “Where do we go from here?” posted on 3rd December 2016. (…and my record for future reference….)

Gastro Appointment – Guy’s Hospital 12th December 2016

As the date for the appointment drew closer my stress level increased. Not from the potential medical implications (though some might doubt this!) but the pure logistics of getting to London by 10:20am. It shouldn’t be a problem until you realise we have to rely on Southern Rail actually running a train. As it turned out my train was exactly on time but afterwards there were no more heading to London for 2 hours.

Having arrived at Guy’s Hospital with five minutes to spare I was greeted by a nurse who explained that the clinic was running 45 minutes late. I asked her to put a note on my file that I wanted to see my usual consultant (the top man). The wait increased to just over an hour when I heard my consultant calling my name. TIme to see if there were some answers. I produced my list of questions/comments.

We started out by discussing the outcome of the MDM. Had they been able to reconcile the apparent contradiction between the colonoscopy results and the MRI scan? No, they were at a loss to explain the differences.

The MRI report noted a 100mm stricture in the transverse colon and another in the ascending colon. Neither had been apparent from the scoping. The scan also showed adhesions, one of which was between  intestine and bladder. This could potentially lead to a fistula developing between the two. The tell tale sign would be gas when passing urine. That was a new one on me and certainly not something I had experienced so far.

The word that worried me was “fistula” but he pointed out that it was a possibility not a certainty.

The options left were to repeat the colonoscopy, or the MRI scan, but a barium enema, which is a test designed to look at the colon, would be preferable. (Not sure for whom. I still remember the last one over 30 years ago.) Rather than going straight to another procedure he suggested that we carry out a calprotectin test and if the result was the same or higher than last time (512) then it would be time to start practicising the buttock clench, so vital for the enema.

He asked how I felt generally. My answer was “very well” apart from every 10 days or so getting an upset stomach for half a day then back to normal. There was also an incident when I seemed to be leaking fresh blood but it only lasted a day and I concluded it was purely mechanical, maybe a burst blood vessel. He agreed with my conclusion.

I explained that I was keen to remain drug free having been taking no Crohn’s medication since 2010 (post-ileostomy). Was that an option with mild inflammation? Yes. The aim would be to start treatment early enough, to avoid surgery, should the inflammation worsen. (The knife is always a threat though). In line with my aim of not taking any new drugs I hadn’t been to see my GP about starting Questran for Bile Acid Malabsorption. I would remain on just Loperamide and adjust the dosage accordingly.

The one question I forgot to ask was “Does my reaction to Azathioprine (bone marrow suppression) suggest that some of other common drugs may be unsuitable?” That will have to wait for the next appointment.

I would be having my annual upper GI endoscopy at St.Thomas’ the following week and was wondering if we should also be monitoring my liver for stiffening (PSC). He said I should ask the endoscopist as it was their specialist area. The visit would also give me a chance to drop off the calprotectin sample to the path lab. I would then need to email my consultant in mid-January to get the results. Fingers crossed for <512. Clench.

At the end of the appointment I mentioned that I had eliminated a major element of stress by no longer commuting to London and have virtually retired. As I now had time in my hands I would be keen to do something for the IBD Community.

What is so nice about these appointments is that you never feel rushed. Every question gets a considered answer and all decisions are made jointly. Excellent.

After the appointment it was off to have lunch with a fellow IBD sufferer and then on to meet up with an old colleague for a coffee before attempting to get a train home.

You need an operation

This is an extract from the chapter that covers the immediate period before major surgery for a stricture in my terminal ileum.

Friday, 8th October 2010 – X MARKS THE SPOT

My final visit to St.Thomas’s, as an outpatient, before the operation. I had to visit the stoma nurse in case I ended up having to have a bag fitted. Obviously I was hoping that it wouldn’t happen but you need to cover all the bases. As the saying goes ” Sh*t happens”, and it’s quite relevant in this case!

We started by discussing all the implications of being stoma’d. She told me they were not that difficult to deal with and it should only be for 6 months. She then looked at my physique (= bulges) and how I wore my trousers so she could position the stoma in the optimum place. Once she was happy with the location she marked it. I now had a large black cross on the right side of my abdomen, marked with indelible felt pen and covered by a waterproof sticker. I was still hopeful that it would be intact after the operation.

X marks the spot
X marks the spot

I told the nurse that I intended to keep my blog going whilst I was in hospital. She looked rather sceptically at me and said that for the first few days I would have an attention span of about 5 minutes and it was unlikely that I would feel like doing anything. She was partly right.

I asked what time my operation was likely to start. Surgery usually began at 8:00am but until they saw the full list of operations they wouldn’t be able to tell me where I would be in the sequence. They might have a better idea when I was admitted on the Sunday. When we saw the Enhanced Recovery Nurse the previous week she said that the surgeon likes to do his “interesting” patients early morning and that I was one of the “interesting” ones. It brought to mind the Chinese saying/curse “May you live in interesting times”.

From then on it was just a waiting game until Sunday when I would get the call telling me which ward I needed to report to.

Saturday, 9th October 2010 – LAST DAY OF FREEDOM

The last full day of being able to drive for at least six weeks so we decided to go out for the afternoon to see the autumn tints at the National Trust’s Sheffield Park Garden.

In the evening I made a final list of chores that needed to be completed the following day before I got the call from St.Thomas’s telling me which ward to report to and when they wanted me. I decided to see just how far down the list I could get. I was under strict instructions not to leave home until the hospital had rung but had been assured that they would find me a bed and that the op would go ahead on Monday unless the surgeon fell off his bike again. Since he had done that last year they were hoping he had learned his lesson.


Sunday, 10th October 2010 – THE WAITING GAME

I always knew that this day would be the worst in the process so far. The admission letter told me not to leave home until the hospital had contacted me with the name of the ward I was to report to and at what time.

All the chores were completed in the morning and then we waited for the call. It got to half past two and the tension was just too great so I rang the ward I thought I was being admitted to. Rather worryingly I was told that they had no record of me but would do some ringing around and let me know what was happening.

About 10 minutes later I got a call to say that there wasn’t an available bed in Page Ward but I would be expected in Howard Ward instead. They would call me back to confirm when I was needed. We had a quick look at the St.Thomas’s website and couldn’t see Howard Ward listed. More worry.

I then got a call from Howard Ward to say that I could come in as soon as I was ready and that I was getting a single room in the Private wing of the hospital but not to get too comfortable as it was for one night only.

This really was the most stressful time for myself and my wife but as soon as we set off for London I relaxed and then became positively chilled out. Unfortunately it wasn’t so easy for my wife. If anything my laid back attitude made those around me more anxious.

Private Room
My private room – one night only

My sister picked us up and took us down to the station and we all boarded the train to Waterloo. We walked up from the station to St.Thomas’ and arrived just after half past four. Howard Ward is on the twelfth (top) floor of the hospital and entrance is via a set of locked doors. It took a while to find someone to let us in and eventually were greeted by a friendly ward sister who showed us to my room. The first impression was “Wow, what a view” as we looked south down the Thames and over to the Houses of Parliament.

Just before six o’clock I said my goodbyes to my wife and sister, wondering, at the back of my mind, if that would be the last time I would see them. I don’t want to sound over dramatic but it was a possibility. Apart from that one doubt I was remarkably calm and collected (and have been so ever since, no matter what my health has thrown at me. I wish I could pass the secret on to others but it simply happened and not as the result of a conscious effort).

The ward sister returned to check my details, blood pressure and heart rate and take some MRSA swabs. Then we were joined by a doctor who stuck a cannula in the back of my hand and took some blood samples. I was allowed to eat up until midnight but after that it was to be fluids only. My dinner arrived and I ate it whilst watching the river traffic passing up and down the Thames. Mainly pleasure boats packed with people for an evening cruise, taking advantage of the autumn sunshine.

Howard Ward
Ready for dinner

When I had finished my dinner I was connected up to a drip and told to expect another visit from a doctor around 11:00pm.

Once you’ve been operated on they like to get you down into the main surgical wards as there are more staff around to keep an eye on you. I still didn’t know what time the operation would be and wouldn’t be able to find out until the surgeon arrived in the morning.

I took the opportunity to spend the next few minutes chilling out, watching the sun set over the River Thames. The next update to my blog would be after the operation. It would probably be at least Tuesday before I would be in a fit state to type further entries.

Into the unknown……..but what a view.

Thames - Upstream from Howard Ward
The view from Howard Ward – looking upstream towards Battersea

Monday, 11th October 2010 – PRE OP

I was amazed that I managed to get some sleep. I was woken up at 2:00am by one of the nurses to connect a new drip and then went back to sleep. The next time I woke it was a glorious autumn morning. One of the house doctors came in, introduced himself and explained I was the last on the list for surgery as I was the most “interesting” and they didn’t know how long the operation would take. He answered any questions I had and then went off to the operating theatre. I was given DVT stockings and a surgical gown to put on. I lay on the bed watching the sun rise over Millbank.

It's a beautiful day
The sun rising over the old part of St.Thomas’

I was then visited by the anaesthetist. He said that it looked like I would be going down to theatre at 11:00am and it could be a 5 hour operation. There were some formalities that he needed to run through which revolved around risks and consent forms. He explained that they intended to use an epidural for pain control. Whilst this had proved very effective there were a number of risks involved. He went through each one in turn and gave me the probability of each occurring. At the end of it I signed a consent form that confirmed I understood the risks and I was prepared to go ahead with the operation.