All posts by Crohnoid

24+ hours in Accident and Emergency

Another unplanned trip to hospital but certainly a lot less fraught than the last time I was taken to A&E on the occasion of the veins in my esophagus bursting. That was back in 2012.

This latest visit would be a good chance to witness the much publicised NHS A&E in crisis from first hand, and also find out what was wrong with me. I decided to record my progress through the system (which is why this is a long post).

THE ROAD TO A&E

Last Friday lunchtime I was making my way indoors, after doing some outside chores, when I started to feel nauseous. It was bad. Then the shivers appeared. I started to shake violently and uncontrollably. This took me back to the period immediately after my ileostomy when I woke up in Recovery. The solution that day was for the nurse to cover me with a Bair Hugger, a hollow blanket into which they blew hot air.

I sat on the sofa for a while and slowly the nausea passed but the shivering continued and my extremeties where freezing. Nothing for it but stick the electric blanket on maximum, fill a hot water bottle and go to bed. I finally managed to get to sleep and around five hours later woke up to find all the symptoms gone. Very strange.

The following morning my wife commented that I was turning yellow. That rang alarm bells because it was one of the signs I had been told to look out for as an indicator that I had problems with my liver. Should I go straight down to my local A&E now? I was feeling OK. I posted the symptoms on the PSC and BAM support FB pages and asked for opinions. They started trickling in. The concensus was that it could be very serious and that I should go down straight away.  To be honest the thought of going down to A&E over the weekend did not fill me with enthusiasm and I decided, since I felt OK, I would go and see my GP first.

First thing Monday I called the surgery and was offered an appointment for 11:00. I mucked out (stables) and then set off to the doctor’s. The consultation must have lasted 20 minutes and he concluded, that given my medical history, I should undergo tests as I did look jaundiced. The only way to get tests done urgently was to make my way to A&E. We then discussed whether I should go to East Surrey (local) or St.Thomas’ (my usual hospital). I said I would seek the advice of my consultant at St.Thomas’ before making that decision. I sent off an emai to which there was a prompt reply saying that I should go to my local A&E.

I decided it would be worth packing an overnight bag, “just in case”. I actually referred to one of my old posts for a checklist – https://www.wrestlingtheoctopus.com/top-tips-for-hospital-survival-updated-november-2014/

After lunch I was given a lift down to East Surrey Hospital, Redhill.

TIMETABLE IN A&E

13:49  Booked in at reception. The indicator board was showing just over 2 hours wait to be seen. Each time I glanced at it the time was increasing. Luckily I had a book with me.

14:54 Called in by Assessment (Triage) Nurse who went through details of my medical history, current symptoms and medications. When she had sufficient information she took me through into the main A&E area. So far so good, just over the hour since admission.

15:15 Handed over to A&E Registrar who took me to a curtained cubicle, fitted me with a cannula so he could take blood tests. There were a number of phials to fill and, something I’d not seen before, a couple of bottles for blood cultures. Once he had sent them off for analysis he came back and asked a lot more questions about my medical history.

Obligatory cannula selfie – as required by The Patients’ Code

Because my recent medical history is complex I had the presence of mind to take a copy of the chart I had drawn up showing the period 2010 to 2017.

Here’s the document – Medical Record Chart – 2010 to 2017

16:00 First blood results returned and OK. It would be the later samples that were of more interest. I was impressed as it was only an hour from being assessed. To free up the cubicle I moved to a chair in the waiting area.

18:07 The good progress made earlier had lulled me into a false sense of optimism. The A&E Registrar told me that I would be kept in overnight in order to carry out an ERCP in the morning. I was taken to the CDU (Clinical Decision Unit) and given a bed. It would be a lot quieter here. I decided to stay in my normal clothes and sat in the bedside chair reading my book.

18:20 Dinner is served.

Cordon bleu dinner

In the past I have defended NHS hospital food but in this instance I’ll let you decide. I took a few mouthfuls and resigned myself to a night in A&E. Since the CDU is just for transitory patients there are no overbed entertainment units. I would have to content myself reading my book.

The CDU (Clinical Decision Unit) – photo taken on second day in A&E

19:10 The A&E Registrar reappeared. He had discussed my case with the Medical Doctor and Consultant doing their Ward Round. They were not as concerned with the blood test results now they have the full set. The Medical Doctor would come and see me to decide way forward with a view to me going home that night and then having scan at GSTT.

21:20 Still waiting to see Medical Doctor. Went and found nurse to see what was going on. He bleeped Medical Team. I explained that I was concerned that by the time I got discharged it would be too late to expect a lift home.

22:43 Still no sign. Nurse bleeped Medical Team for third timehhh.

22:52 Nurse came to tell me that Consultant will be around to see me in the morning. I got dressed for bed and attempted to get some sleep.

07:40 Did manage to get some sleep apart from a few disturbances. Nurse said that Consultants ward round starts at 9:00 so I would see them some time after that.

10:55 Call on my mobile from my GP to see how I was. Thanked him for ringing and explained that I was still waiting to see a Consultant after 21 hours. I would let him know what happened.

12:00 Pointed out to a nurse that I had been due to see the Consultant that morning. He said “it’s complicated” which got me thinkng but he meant my condition but he meant the situation. There had been a communication breakdown and he didn’t know why I wasn’t seen last night. The Medical Registrar was now, personally, going to deal with my case. The nurse had seen the original A&E Registrar and told him that his patient from the previous afternoon had still not been seen.

12:40 One of the Junior Doctors appeared and asked me how I felt. I replied “forgotten”. We went through my medical history and symptoms again. She would go off and discuss with her boss. They would come and see me in next hour to hour and a half.

15:05 It was now 24 hours since being admitted to East Surrey A&E and I was still waiting for the Consultant to come and discuss treatment or the next steps. I started to wonder what the implications of self discharge would be. I didn’t want to jeopardise any future tests.

15:20 Went and found a nurse and asked them to contact the Medical Team to find out what was happening.

15:30 The junior doctor reappeared with her boss, the Consultant. He apologised and said I should have been seen that morning and had a blood test. We went through the prognosis.  He thought the most likely cause was a gallstone blocking tube on Friday but had now passed through. The plan was to take a quick blood test and then for me to see a member of Gastro Team between 17:00 and 18:00. If they are happy then discharge.

16:00 A nurse came in to take the blood samples and then send them to the lab.

17:50 A member of the Gastro Team appeared. It was my old consultant who I saw between 2000 – 2009 and I got on well with. It was nice to be re-acquainted. After a short discussion he said “you’re too well to be in here. I’m going to discharge you but I want you to have a follow-up blood test and an ultrasound scan at a later date.” (He was quite happy that this current episode be closed out by East Surrey rather than referring back to St.Thomas’.) All that was now stopping me from leaving was the paperwork and he was passing that task to one of his junior doctors to complete.

18:05 Dinner arrived. I didn’t want to risk going hungry by turning it down but when I lifted the cover it appeared that the greater risk would be eating it. Not wanting to tempt fate, I had not changed into my outdoor clothes yet. I went back to reading my book.

19:15 The junior doctor that I had seen twice that day already appeared with the necessary paperwork. All I needed to do was get dressed and wait for the nurse to hand over the dischargeletter.

As ever the NHS nurses were great – friendly, professional and caring. (Although I already knew this)

WHAT DID I EXPECT?

I have attended A&E many times, both as patient and accompanying others, so I already knew that getting treated was going to involve a fair amount of waiting around. This is why I chose to go to A&E unaccompanied.

In the past I’ve been on edge the whole time, waiting for each step in the process. This time I was determined to change this. I decided to set my own “target” times at the end of each step for the next one to start. That way I could settle down to my book and would not need to be constantly looking at the clock. If the next step started before my target, then it was a result, and if it hadn’t started then it was time to go and ask someone what was happening.

I knew that my first concern would be to find out what was causing the problem and what the solution was, but coming a very close second would be getting discharged as soon as possible.

It was the first time I had been in A&E since setting up a Twitter account and I decided that Tweeting would be a great way of recording my progress through the system and giving praise (or brickbats) as required.

HOW WAS THE EXPERIENCE FROM A PATIENT’S POV?

It all started very positively. The first blood tests were back promptly. The subsequent wait for two hours was bearable. When I was taken to the Clinical Decision Unit at 18:00 I had resigned myself to staying in overnight ready for a test in the morning.

It was when the A&E Registrar came back an hour later and said I would be seen by a consultant and could be going home that night that I started to feel unsettled. He was doing his best to keep me informed with his best information but now I was up against a finite time frame as I wouldn’t want to be told at 23:00 “OK, you can now go home”.

Despite the best efforts of the nurse it was not until 22:52 that I was finally told that I would not be seen that night. Tweeting turned out to be a great way of relieving tension and I saw no issues in “live tweeting” the situation. Others may disagree?

My new expectation would be to see the Consultant the following morning so you can imagine my frustration as having seen nobody by 12:00 and then to be told that “due to a communication problem” I had not been seen the previous evening. It was another 20 minutes  when a junior doctor appeared, no doubt prompted by the nurse’s bleep. Up until that point it felt like the CDU was just an area where a patient could put and then forgotten about by the doctors.

At this point I could have become very wound up but decided to leave it until I had been there 24 hours from admission. At that point I still hadn’t seen a consultant and I felt it really was time to escalate my situation.  It must have worked. In the meantime I dashed off a few more Tweets and started to think about the implications of self-discharge. From then on we seemed to be back on track and things happened in a timely manner.

WHAT CAN THE SYSTEM LEARN?

Communication. Communication. Communication.

How many times is this held up as the main complaint of users across a broad range of services. Visiting A&E is a stressful experience for all participants. If that stress can be minimised then it must be best for everyone.

Maybe the Consultant was particularly busy on the Monday night. I was hardly a priority case, but a simple message to the CDU asking a nurse to explain would have relieved the situation. The same again the following morning. A message saying that the doctor was running late but assuring me I hadn’t been forgotten would have made all the difference. Instead it was down to me to keep chasing at the relevant juncture.

Now or Later?

Are you a “Now” or “Later” person? When you’ve undergone some test or maybe an MRI scan do you prefer to get the result/report as soon as it is available or do you prefer to wait until you see your consultant?

I’m definitely the former. I like to know what could lie ahead so that I can come to terms with the worst scenario and then, if reality is actually not as bad, result!

When it’s something like a calprotectin test then it’s simple to compare the new value to previous ones and identify the trend. (I dropped a sample into the Path Lab for analysis just before Christmas and should be able to get the result soon).

The problem comes when you read a report that is well beyond one’s own limited medical knowledge or experience. I had such a report arrive in the post last week. The MRI scan itself was carried out at the end of last July but if you’ve read my previous couple of posts you’ll see that there was an apparent conflict between it and a subsequent colonoscopy. I had asked my consultant to send me through the text and he duly obliged.

Before we go any further here it is :

“MRI Small bowel study :

Comparison is made with the previous MR in April 2012. Previous ileocolic resection again noted.

There is stricturing seen in the proximal and distal sigmoid colon as before, with relative sparing ol the midsigmoid colon. As before there are adhesions between the rectosigmoid, proximal sigmoid and the dome of the bladder which is tented upwards and slightly thickened, suggestive of developing colocolonic and colovesical fistula formation. No intravesical gas is however seen at present. There is moderate prestenotic dilatation with the descending colon measuring 6.1 cm in diameter

As before a further stricture is seen in the proximal transverse colon measuring 10 cm in length, with slightly less mural thickening than before. Moderate prestenotic dilatation of 4.8 cm is seen. There is further stricture seen in the ascending colon over a length of 5 cm. Mild mural thickening and oedema is noted in the caecum and distal 5cm of the terminal ileum as previously.

The small bowel loops are suboptimally distended, with the impression of adhesions between the small bowel loops and anterior abdominal wall. No definite further strictures or active small bowel disease is seen. Mild splenomegaly is demonstrated at 15 cm as before There is a mild atrophy of the pancreas. Gallstones noted within a slightly thickened gallbladder as previously. Solid organs otherwise unremarkable.

No intra-abdominal collections. Small trace of fluid within the pelvis.

Conclusion: Appearances are similar to previously with stricturing seen within the colon, associated prestenotic dilatation, and evidence of penetrating disease as before.”

I mentioned this to another IBD patient to which they replied :

“This is exactly the reason why I don’t like getting copies of blood results or test reports as it always throws up questions that would not otherwise be there (particularly if you are feeling well). And it creates a feeling of unwelcome uncertainty when there is not a medical person to explain it….”

I can understand this reasoning and, having read the above I’m starting to think that maybe that’s the way forward.

There are four words in particular make me wonder what lies ahead – “stricture”, “fistula”, “adhesions” and “penetrating”. I’ve experienced them all before and it ended up with surgery. If I need further episodes under the knife then it’s not really a surprise. My consultant quotes the average time between surgeries for Crohn’s patients as 10 years. I’ve reached six and a half from the ileostomy, but before then (perforated bowel) it was 30 years.

Surgeon’s drawing of surgery – October 2010

Next time I see my consultant it should be an interesting conversation. How much of the report could have been expected given my past history? Are there any pointers to the progression/reawakening of Crohn’s disease? What next? Does it point to surgery sooner rather than later?

Once I have my latest calprotectin results back then I must get a date for that next appointment……

Until next time

 

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.

Life Changing

Monday 11th October 2010 – OPERATION DAY

The operation time slipped from the 11:30am originally planned but eventually I was collected from the 12th floor and arrived down in the anaesthesia room at 12:30pm. The theatre team were ready for me and started the preparation procedures. They seemed to be a very happy crew, laughing and joking and that helped put me at my ease.

The anaesthetist I had met earlier then appeared. He greeted me with a broad smile and said he was ready to fit the epidural. Once that was done he said I’m just going to give you a mild sedative to relax you. I just drifted off into oblivion. Never trust an anaesthetist.

That’s the last I remember until waking up at six o’clock in Recovery. It was freezing. I was feeling no pain as the epidural was doing its job well but I was freezing. Shivering. Violently shivering. The house doctor, that I had seen in my room that morning, came up to see how I was. His first word was “Sorry…” so I knew what was coming. He told me it was a four and a half hour operation and that because of what they found when they opened me up it was necessary to have a stoma in order to give my large intestine a chance to recover. He lifted the blankets so I could see what they had done. It didn’t really come as a shock as I always knew it was a possibility and was mentally prepared for it. I can imagine what it would have felt like if I hadn’t been forewarned.

By late afternoon my wife was starting to get concerned. It must be a lot worse for those sitting at home waiting for news than the patient who is comfortably numb. She hadn’t had any news on how the operation went so she rang the Ward. They told here that I hadn’t arrived yet but would call when they knew what was happening. Just gone six thirty a doctor rang to tell her that I was OK. It had been complex surgery and I was still in Recovery.

The Team in Recovery were concerned about my readings, especially the temperature. At one point I had a “bair hugger” put round me which is a hollow blanket into which hot air is blown. Now I know what a formula one tyre goes through on the grid. I was offered a warm drink just a couple of hours after the operation. No more “nil by mouth”. It wasn’t until I was finally wrapped up in a large, microwaveable blanket that my temperature began to return to normal and I could be taken up to the ward. By now it was around eight o’clock.

Another huge change over the past few years is being able to use a mobile phone in hospital. I suppose it was inevitable as people would use them whatever. I asked the nurse if I could get my phone so I could ring my wife. As I explained earlier, they had locked my valuables in the ward safe and the night shift didn’t know the combination. Very frustrating.

I was taken to Northumberland Ward on the 11th floor, where I spent the rest of my stay. I had been expecting to be put in Page Ward, as that was the ward specialising in colorectal surgery. Unfortunately there were no beds available so I was put into the sister ward next door where they specialised in upper GI conditions.

{I felt really good and so could have easily written up my blog if I’d have had my iPad. (I imagine this was a post op high induced by the drugs). I finally managed to get hold of it the following morning to write this post.)

The house doctor came to visit me again to see if there was anything I needed. I asked him if he could ring my wife and tell her I was safely up in the Ward. He had a number of other things to take care of first but eventually she got a call at eleven thirty……..

I said at the top of this post that it was a truly life changing experience. I’ll go into more detail in another post but because of it :

  1. Lost my terminal ileum and gained BAM (bile acid malabsorption)
  2. Got stoma’d
  3. Started my relationship with St.Thomas’ Hospital
  4. Became very laid back about all things medical
  5. …and started blogging

Post Op Note : I never fully understood exactly what the operation involved. Earlier this year I contacted one of the surgeons and using the operation notes and pathology report, he put together this sketch for me.

op-drawing-by-surgeon

Where do we go from here?

At the moment it makes a change to write a post not connected to the #HAWMC (Health Activist Month Writer’s Challenge) that I’ve just completed. Having said that, there is still a link because I have mentioned in a couple of those posts that I find blogging therapeutic. It helps me to be objective and get things straight in my mind.

This post is therefore primarily for my own benefit but any thoughts/comments/questions welcome.

Background

I’m off to see my gastro consultant at Guy’s Hospital in just over a weeks time (12th December). I’ve already started getting my list of questions ready but I want to make sure I capture all the relevant details. I’m expecting us to agree next steps given my recent test/procedure results.

Since my reversal operaion in June 2011 I’ve been taking no Crohn’s drugs at all and everything has pointed towards me being in clinical remission. I really don’t want to take any more medication than the current Omeprazole, Propranolol, Loperamide and iron tablets  that I am on for PVT (Portal Vein Thrombosis).

When I my consultant, almost a year ago I said “I feel fine. I can’t see why we shouldn’t stretch these appointments out to yearly intervals.”  I don’t know exactly how long it was before I started to regret it, probably about three months, as the bathroom dashes had returned. As ever, with IBD/Crohn’s, it’s not easy to pinpoint what has caused the change and now that I have the addition of Bile Acid Malabsorption to consider it makes it even more difficult.

I tend to discount stress as I like to think I manage it quite well. At that time I was commuting to London, or more precisely Canary Wharf, and the travelling was always unpredictable, mainly due to the truly appaling service provided by Southern Rail and the frequent RMT strikes. To be sure of getting a train meant getting up at five o’clock in the morning. Maybe stress did play its part this time. My wife has said I seem a lot more relaxed now that I’ve given up work. (I decided to semi-retire at the beginning of November but I’m open to offers for short term assignments.)

The upshot was that I emailed my consultant and explained the problem. He suggested a calprotectin test (stool sample) and we would decide what to do next depending upon the result. After three weeks (28th May) the test report came back showing a considerable jump upwards to just over 400, suggesting active inflammation.

A colonoscopy was arranged – 13th July – and the finding was “ongoing mild colonic crohn’s disease. No evidence of crohn’s recurrence in the neo-terminal ileum.” The previous scoping (February 2015) noted “mild, patchy erthema (redness) throughout the colon” but concluded “quiescent (inactive) crohn’s disease.”

Because a colonoscopy can only just reach into the small bowel an MRI scan was booked  to look at my small bowel. I didn’t have to wait long – 29th July with a follow-up appointment on 5th September to discuss the results. Suprisingly, the MRI showed a stricture in my colon even though the scope didn’t. Very strange. This conundrum would be put to the Gastro Dept’s next MDM (Multi Disciplinary Meeting).

The MRI scan also showed adhesions, which are usual after surgery, but I would like to know a bit more about locations. I’ve been getting an ache around ny anastomosis for a number of years but it seems to be worse in the last week or so. This may be down to lifting a couple of “heavier than they looked” objects. Yes, I know it was stupid but male arrogance etc…..

I’m intrigued to know how the MDM reconciled the apparently contradictory colonoscopy and MRI scan results? I would have thought the camera results would take precedence. I also need to understand if the adhesions, on the scan, are just confined to my rejoin (terminal ileum). We’ll talk about their conclusions on 12th December.

We also discussed the large jump in calprotectin level and he asked me to repeat the test to check whether this was a rogue result. Unfortunately the result, when it came back, was even higher.

Looking at the calpro graph it’s apparent that somewhere between November 2015 and May 2016 the inflammation restarted.

calproI mustn’t forget to mention that a few weeks back I was having a “do I call an ambulance” moment when I started loosing some blood from where the sun don’t shine (no, not Manchester). I concluded that due to the fact it was bright red it must be very fresh and the result of surface injury and did not warrant 999. By the next day I was fine again.

Over the last few weeks my digestive system seems to be back on an even keel so is it possible/advisable to continue without medication even though mild inflammation is present? Is any damage done by not taking medication for such a long time? Does the calpro trend suggest that the inflammation is getting worse? I have noticed that I can sometimes feel the action of peristalsis across my middle which I’m assuming is matter passing along the transverse colon. Maybe this ties in with the mild inflammation.

I will mention that I have not talked to my GP about Bile Acid Malabsorption as my digestive system seems to have returned to normal with just the odd blip every 10 days or so. Is this return to normality as a result of no longer commuting to London?

I’m booked in for an upper GI endoscopy on 21st December to monitor the growth of varices in my esophagus.  I’m wondering if we should be doing any further monitoring of my liver to look for worsening of the cirrhosis. Add it to the list.

I just need to turn the above into a succinct list  and I’m ready for the appointment. I just hope the newly announved ASLEF ovetime ban doesn’t stop the trains from running.

It should be an interesting session on 12th.

 

Living with a timebomb

I’m not trying to scare anyone with this story. It is very unlikely you will experience the same but it is worth being aware of yet another part of the rich tapestry that Crohn’s Disease can weave for us.

This is what happened…..

Monday 28th May 2012 – Outpatient Appointment at Guy’s.

The original intention was to go into work as usual then catch the Tube down to London Bridge in time for my 10 o’clock appointment. I wasn’t feeling so good so decided to catch a later train and go direct to the hospital. I’m used to an early start with virtually no traffic so rather underestimated how long it would take to get to Redhill station from home. By the time I got to the station I could hear the train pulling into the platform. I didn’t realise that it would wait there 5 minutes before leaving so I tried to run and realised just how bad I felt. My chest started heaving and my heart pumping. I really thought I was having a heart attack. Once I was on the train I managed to take some deep breaths and gradually return to some type of normality.

I made my way to the Outpatients Dept. in time for my appointment but then had a long wait before seeing my consultant. When I was finally called in I was relieved to find that I was seeing the top man, not one of the registrars. He did apologise for the long wait.

We went through my list of queries and eventually discussed  the issue I was having with passing a jet black liquid from my back end. He asked me to get a sample for analysis which I thought would be easy but no luck. He also asked me to make an appointment to repeat the colonoscopy to verify the results of the MRI scan.

Eventually I was on my way home and by now the temperature was high. I bought a bottle of cold drink and then boarded the train back to Redhill. By the time I got home I was feeling pretty exhausted and went to have a lie down to recover. Around six o’clock I started to feel sick so disappeared into the toilet and then it happened… (don’t read any further if you are squeamish)

I brought up a large amount of what looked like redcurrant jelly but was clearly freshly congealed blood. I must have gone into shock for a few minutes, thinking “What do I do now?” (Not like me at all. I usually come quickly to terms with what is happening, decide the best actions to take and get on with it but this was like nothing I had experienced before and for a while I couldn’t cope).

I came to the conclusion that this was definitely a 999 moment. I heard my wife coming back from feeding our ponies so called out to her to ring the number. She made the call and then responded to the long series of questions that you now get asked by the operator. The decision to send an ambulance was made and my wife then hurried herself to get together some things into a bag before the ambulance pulled up our sideway. She didn’t quite finish as the ambulance arrived incredibly quickly. When she opened the door she recognised the paramedics as the ones who had taken me into hospital the last time we had reason to call 999 (see “Post Op – Back Home” page – 12th November). They came in to see what state I was in, took one look at the blood surrounding me and, to put me at ease, told me that it was only a small amount!

I was loaded into the ambulance and then went through various tests before we set off. They were obviously concerned at my state and said that my blood pressure was very low. They put me on a drip and the driver said “I think we’ll go for the siren”…….

A few minutes later we arrived at East Surrey Hospital and I was taken straight into the Accident and Emergency assessment area and was immediately seen by a doctor to make sure I was stable. Over the next hour or so I was seen by a couple more doctors whilst they decided the best ward for me to be sent to. Their decision was to admit me to the Medical Assessment Unit where I underwent further assessment. By this time my sister had turned up to take my wife home so we said our goodbyes and I waited to see where I would end up.

My wife returned home and had to clear up the blood from the floor. I’m so lucky to have someone so tough to support me when things are going wrong.

The decision was taken to send me to the ward which specialises in gastroenterology and I was duly taken to this new ward. I then saw the doctor on duty who made sure I was comfortable and worked out what drips I needed to be on.

Tuesday 29th May 2012 – the rest of the night was spent undergoing regular checks on my blood pressure and temperature. I didn’t get much sleep but was just happy to be in the best place, given the condition I was in.

During the day I saw various doctors who were trying to decide which tests I should undergo. The immediate priority was to have an endoscopy (camera down throat) to see where the blood had come from. They tried to get me onto that day’s list and so I wasn’t allowed to eat anything. Unfortunately an emergency case took priority and at six o’clock I was told that I could eat some supper. Apparently the doctor was very surprised at how calmly I took the fact that I wouldn’t be having the test done that day and said she wouldn’t have been so laid back.

They decided that I needed to have a blood transfusion as my blood count had fallen to 6.6. The normal figure for a man is around 14. I therefore had two drips going into the cannula in my left arm.

Wednesday 30th May 2012 to Monday 4th June  – The blood transfusion had brought my blood count up to 8.6, still very low. Over the next few days I had the upper GI endoscopy. I think the doctors were expecting it to show that I had an ulcer, which had burst, or that the Crohn’s inflammation had spread into my stomach. What they actually found were esophageal varices, prominent veins in the lower third of the esophagus and usually related to alcoholism! I looked them up on the internet and found that there is a possible link between them and the Azathioprine drug that I had been on for seven years.

The next step was therefore to have an ultrasound scan to look at my liver as sometimes damage to one of the large veins could route the blood supply into the esophagus causing the varices. I asked what the outcome of this test was and it sounded like nothing particularly untoward showed up apart from a gall stone and a slightly enlarged spleen. I would ask again later, just to make sure I got that right.

The whole ward then went into a sort of 4 day limbo as it was the extended holiday weekend to mark the Queen’s Diamond Jubilee. The number of doctors was greatly reduced and were only seeing patients by exception. I resigned myself to not progressing any further with an explanation of my problem until the following Tuesday.

The phlebotomists did their usual rounds every day and I later found out that my blood count had dropped to 8.0 from 8.6. Not good and would prolong my stay in hospital. The ward sister said that the doctors would be doing a proper ward round on the following Tuesday so I had plenty of time to get a list of questions together. I resigned myself to not progressing any further with an explanation of my problem until then.

Tuesday 5th June 2012 – I knew at some point I would encounter the consultant that I had emailed around a year ago saying that, basically, I was now being treated by St.Thomas’ so not to bother to make any further appointments for me. I had a very good reason for doing this and it is recorded in my book (when it finally gets published).

I’m not going to go into all the details of this encounter but suffice to say that initially he would not look me in the eye and my decision, a year ago, was clearly still bugging him. I reiterated my original reason for leaving his care and this may not have helped the situation. (My decision to move to St.Thomas’ was not taken lightly as it is far easier for me to get to East Surrey Hospital from home, approx. 10 minutes, than it is to get to St.Thomas’). At one point it was suggested that maybe it would be best for me to be put in an ambulance and transported up to London.

I was now in the position that I was under the care of East Surrey for my emergency admission but the long term treatment of Crohn’s was still with St.Thomas’. At the end of a long and detailed discussion on what my current situation was caused by, whilst the junior doctors listened on, we ended up shaking hands and agreeing that we should do what is best for my long term health. Enough said on this matter, let’s move onto possible diagnosis, tests required and best place to have them carried out. So clearly I was not in a position to think about discharge yet.

The recurring terms he used were primary sclerosing cholangitis (PSC) and portal hypertension. He thinks that these are symptoms of a malfunctioning immune system and are also linked to my thrombocytopaenia (low platelet count) and enlarged spleen. I had thought that this last condition had been brought on by the use of Azathioprine but he was sceptical at this.

After the ward round was complete I called one of the junior doctors over and asked how to spell “that primary thing the consultant mentioned” so I could look it up. She replied that it might not be a good idea at present. I decided to park the research for the day but happened to mention it to my sister who immediately looked it up and rang me back. It was all a little scary. Ultimately, if PSC was diagnosed, the long term prognosis – liver transplant! The only way of getting a definite diagnosis would be to carry out a liver biopsy.

With regards to where the tests should be done and the subsequent treatment – I’m not sure what we concluded. I think that we agreed that due to the complex nature of my Crohn’s I would be better remaining under St.Thomas’ as they have more extensive facilities than East Surrey. I wouldrevisit this subject tomorrow on the ward round.

I try to keep a cool head at all times and remain rational so I thought I’d taken the above information in my stride but a little voice at the back of my head kept saying “you’re only keeping calm because you don’t understand the full implications of what you’ve just been told”. When I caught sight of the IBD Nurse I asked her if she could answer some questions, including what were all the long words the consultant were using. She could tell by some of my questions that no one has ever sat down and gone through some of the basic concepts of Crohn’s and its implications.

I got to thinking about this later and she had hit the nail on the head, one of her many skills! (which also includes an encyclopaedic, some might say Wikipedic, knowledge of medical terms and conditions).

No one has ever talked through the bigger Crohn’s picture. For years I thought it was simply an inflammation that caused diarrhea and some pain for which you took steroids. Some years later I ended up with a stricture so I was then aware of another possible complication. The results of the CT scan that I had done three years, or so ago, then introduced me to the concept of fistulas and having to have a stoma. It would be good to be able to spend some time talking this through with a specialist and understanding other possible symptoms and potential effects on other parts of the body. Ultimately I would like to get a clear understanding of the likely effects on my potential life expectancy or quality. I could then use the information to decide when to retire. Maybe I should talk to an actuary.

Back to the ward – it was decided that I should be given another 2 units of blood. Since I hadn’t had any for a week they needed to do another “crossmatch” as they only last 7 days. (All part of ensuring you get the right blood type).

Wednesday 6th June 2012 – that must have been the quietest night so far on the ward. I slept until about 3:00am but then couldn’t get back to sleep until around 7:00am.

The phlebotomist turned up to take more blood samples and she was followed by the registrar and junior doctors on their round. I had quickly made a list of things to ask them – the top question was “plan for escape”.

I was somewhat taken aback when the Registrar said that as long as today’s blood test showed an Hb of over 10 then I could go home. Today! I really wasn’t expecting that. I had told everyone I was in until at least the weekend or possibly would be transferred to St.Thomas’. I’ve now had to wait until around 1 o’clock for my score.

I discussed various things with the Registrar, including going over again what the endoscopy and ultrasound tests had shown. For my long term care they are suggesting that I remain under St.Thomas’ and would be liaising with my specialist there to make sure the necessary test results were passed over. One of the junior doctors was tasked with making this contact.

Thursday 7th June 2012 – back home. My first good night’s sleep for 10 days. Time to take stock. The discharge letter made interesting reading but took a fair amount of translation. The bulk of it listed what they didn’t find so I was rather confused as to what I have actually got wrong with me. The only definite observations were an enlarged spleen and a gallstone.

I read through the leaflets that came with the new drugs. They’d given me – Propanolol – a beta blocker used to prevent stomach bleeding in patients with high blood pressure in their liver or swollen blood vessels in their gullet; and Omeprazole – a proton pump inhibitor to reduce the acid in one’s stomach. Reading through the possible side effects of these two drugs I could end up with insomnia and nightmares. Fingers crossed.

…and since then? – I was put under the care of a liver specialist and underwent a liver biopsy to check for cirrhosis. The result showed mild stiffening, something to keep in mind. I now have yearly visits to the endoscopy dept to check out the varices. If they have regrown then the first visit is followed by another two or three when they “obliterate” the veins with rubber bands. Next visit January 2017.

I inevitably turned to the internet. The first page I found, when I searched for PVT and Crohn’s, started with the words “if the patient survives….” Another one said “inevitably fatal”. Not a good start and I was only partly comforted by realising that the articles were written many years ago and by hoping that treatment must have moved on leaps and bounds. If I was to suffer another major bleed from the varices it’s a question of how quick I can get to a hospital and have a transfusion.

It’s like living with a timebomb.

IBD Tests and Procedures

Apart from the physical and psychological effects of Crohn’s Disease there’s one aspect that I don’t see mentioned that often – the huge amount of time that patients can spend attending appointments and undergoing tests or procedures. Just how disruptive this can be has been brought home to me since my ileal re-section in October 2010.

To give you a flavour of the types of tests and procedures Crohn’s (and related conditions) can require I have extracted descriptions, from my blog, of the different types of tests I’ve been through over the years. These are my experiences, yours may be completely different.

Apologies – this is quite a long post – but I have been through many procedures and some are quite involved. I’ve arranged them in alphabetical order.

Can I have my life back?

BARIUM ENEMA – Mayday Hospital – 1978

Of all the procedures I’ve been through I think this is the most undignified. Having taken the usual purging prep the previous day, arrived at the hospital and changed into a gown, I ended up on a bed with a tube stuck where the sun don’t shine and barium liquid being poured down it via a large funnel. Once I was “full” the instruction came “to try and to hold it all in” whilst the tube was removed and the x-rays taken. Just writing this I am clenching my buttocks as I remember that feeling of the tube being gently withdrawn and then it’s all down to muscle control.

With the x-rays complete, there was the dash to the nearest bathroom to allow what went in to come out, rapidly. I think I’d sum up the whole experience as unpleasant and the most likely to end in a very messy situation involving embarrassment, mops, buckets and cleaners.

To my surprise, 40 years on, the procedure is still used occasionally

BARIUM MEAL AND FOLLOW THROUGH – Mayday Hospital – 18th May 1999

This is etched in my memory. As with many of the procedures there was the prep to take the day before which effectively emptied my digestive system. I arrived at hospital and changed into one of those backless gowns that are impossible to fasten properly without help. It was then back to the waiting area. Just putting on the gown already lifts the stress levels and sitting like that in a public waiting area just makes it worse.

The first problem was swallowing the barium meal – a thick, off-putting, tasteless sludge. Having downed the final mouthful there was then a wait whilst it made it way slowly around my digestive system. I was taken to a bed and told to lay on my right hand side for 45 minutes as this would aid digestion. I was then shown into the x-ray room.

I lay face up on the x-ray table whilst the radiographer took a preliminary scan but was not happy with the result. He was having difficulty in getting the barium meal to move around my system due to a stricture. He produced a rubber beachball which he placed between the x-ray head and my abdomen. He then proceeded to bounce it up and down and it slowly did the trick. The x-rays showed that the terminal ileum stricture was as bad as ever. My bowel was down to the size of my little finger. As a result my consultant gave me the choice of starting Azathioprine or having surgery. I chose the Aza.

CALPROTECTIN – Various dates

The procedure is relatively simple – collect stool sample (the most difficult bit); send to path lab; wait 10 days for result. Lab manage to loose result or come up with lame excuse for not processing it. Repeat process all over again.

Research has shown there is a good correlation between the calprotectin result and what one would discover by colonoscopy. There are always exceptions to the rule and, unfortunately, I seem to be one of them. I have a constantly rising calpro figure but with, at present, no definitive explanation. Watch this space.

CAPSULE ENDOSCOPY – Monday 19th November 2018 – St.Thomas’ Hospital

The only part of my digestive tract that hadn’t been seen through a lens was the small bowel between duodenum and my anastomosis. It was decided that it would be worth seeing if there was anything there that could explain my very high calprotectin results. The test would involve swallowing a capsule containing the camera, LED lights and a transmitter. I would have to wear a recording unit for 12 hours whilst the camera made its journey southwards.

The preparation is similar to having a colonoscopy but with none of the dreaded prep solution needed. The instructions listed the medications that would have to be put on hold. These included stopping iron tablets and Loperamide 7 days out. Iron tablets – no problem, but Loperamide – that would be the one instruction I wouldn’t be following. The thought of taking a trip to London having not taken Loperamide for that length of time was not even worth considering.

I arrived at St.Thomas’ and was collected by the specialist nurse. She asked the usual questions and then ran through the risks of the procedure. The main one being the capsule becoming stuck and the possible means required to extract it, the worst scenario being surgery. I signed the consent form.

The first task was to attach the numbered sensors in the correct positions around the abdomen. Once in position the nurse produced the capsule and asked me to hold it between my fingers then pass it in front of the recorder unit. A bleep showed that they were now paired. As she had already input my information into the unit the display showed my name, hospital number etc.

It was time to see how easy swallowing a capsule would be. The answer – very easy. I took one gulp of water and it was on its way. The nurse switched on the live monitoring function and we watched it enter my stomach. To save battery power she turned the display off and I didn’t have the courage to try it myself in case I ruined the whole procedure. (…and what if I had seen something that, to my eyes, looked wrong? A surefire way of inducing stress.

As the unit has a 12 hour battery life she said the unit would switch off just before midnight and I could then remove the sensors. The recorder unit would then need to be returned to St.Thomas’. I explained I was not available the following day so we agreed that I would take it back on Wednesday. Two weeks later the results should be available (except they weren’t).

COLONOSCOPY

Earlier in 2018 I ran a non-scientific poll on SoMe asking which procedure IBD patients found the most unpleasant. Out of 663 respondents, the three most unpopular were – MRI scan 10%; endoscopy 30%; but the clear winner was colonoscopy 58%. Every stage is unpleasant – preparation; fasting; the camera; and the aftermath. So I make no apologies for writing more about this subject than the others.

Preparation Day – Wednesday 19th December 2012  – the day before the procedure the serious “prep” started. I was allowed a light breakfast then only liquids such as fruit squash and Bovril. At midday there were 4 senna tablets to swallow. An hour later I took the first sachet of Citrafleet (sodium picosulfate) mixed with 150ml of water. It didn’t taste that bad and quickly took “effect”. That’s the “effect” that stops you from straying very far from the toilet! When it got to 5 o’clock it was time to take the second sachet. (There are other types of preparation solution in use but they require consuming much larger quantities – KleanPrep – 4 x 1 litre; MoviePrep – 2 x 1 litre – just adding to the misery)

Citrafleet – sodium picosulfate

Procedure Day – Thursday 20th December 2012

Having not eaten anything since the previous morning the hunger was getting the better of me. I was allowed to drink water up to 3 hours before the procedure to avoid dehydration.

I arrived at Guy’s ready for the early afternoon appointment, accompanied by my wife. Due to the use of a sedative the test would not be carried out unless I had someone to accompany me home safely.

I changed into a surgical gown ready to go. My blood pressure was checked and I was asked the standard questions about allergies and medications. There was then a long time spent in the waiting area until a cannula was inserted into the back of my hand. After another wait the doctor arrived. I had not met him before. He sat down to talk through what he was about to do and get me to sign the consent form. Once I arrived in to the procedure room I asked to have minimum sedation as I wanted to watch the camera images on the screen.

Before starting with the camera he asked me various questions about my medical history and the medications used. I explained that a recent MRI scan suggested that the Crohn’s had flared up again in both my large and small intestines. The colonoscopy was expected to confirm this. He then explained the potential risks of the procedure, the main one being the risk of perforating the intestine and requiring surgery to correct it. I signed the consent form and we were ready to go.

I was told to lay on my left hand side, with my knees drawn up to my chest, and the camera was stuck where the sun don’t shine. It all started OK and there was no sign of any inflammation. A real surprise. The camera continued on its way but then reached the left splenic flexure (the sharp bend where the colon turns to run horizontally across the body). Try as he might the doctor could not get the camera to go round the corner. He tried withdrawing it a little and then pushing again. He got the nurse to push hard against my abdomen to ensure my gut was lying flat. He tried getting me to lie on my back. Nothing worked. There had never been a problem in the past and after 50 or so minutes the procedure was aborted. Surprisingly I felt no after effects.

A further colonoscopy would need to be booked or possibly they would try a capsule endoscopy.

COLONOSCOPY (2nd ATTEMPT)

Procedure Day – Thursday 20th December 2012

A very early start to get to Guy’s Hospital for 8:30am. The pre-colonscopy preparation and procedures followed the same pattern as before.

I was pleased to see the friendly face of my lead consultant appear. (He has similar skills to Lewis Hamilton for getting round bends). He had asked me to ensure that I booked a slot when he was in clinic as he wanted to carry out the procedure personally and it had worked. He ran through the potential risks and got me to sign the consent form. We discussed what had happened during the previous colonoscopy. It wouldn’t be long before I would be lead into theatre.

It was another 30 minutes, in which time I was cannulated and then, at last I was on. I walked into the theatre and lay on the table. The oxygen supply, heart monitor and blood pressure armband were all fitted and I was asked to roll onto my side with my knees drawn up. The doctor injected doses of Fentanyl (a synthetic opiate analgesic more potent than morphine), Midazolam (a short-acting central nervous system depressant) and Buscopan (used to relieve spasms of the gastrointestinal tract). You’d think that this cocktail of drugs would knock you out but no, you remain conscious but comfortably numb.

I was asked if I wanted to keep my glasses on and I said “yes” so that I could watch the action on the monitor. Sharp intake of breath and the camera started its bendy journey. It made slow progress but by careful guidance, and some shifting of my position, it made it beyond the splenic flexure and then continued all the way to the anastomosis.

So what did we see in glorious living colour on a large screen – NOTHING. No signs of active Crohn’s Disease. This was the result I was hoping for but didn’t really expect. The consultant assessed my anastomosis as Rutgeert’s score i0. (The Rutgeert’s score is used to predict the course of postoperative Crohn’s disease (CD) and to establish the need for treatment for recurrence prevention. The score i0 translate to post-operative remission).

COLONOSCOPY (WITH A TWIST) – Saturday 11th March 2017 – St.Thomas’ Hospital

I knew this scoping was going to be a bit different. Firstly, the timing instructions for taking the prep had changed. They now proposed taking the second dose on the morning of the procedure! This did not sound like a good idea given I had at least an hour’s journey by train. I chose to take it late the previous evening.

Secondly, it was a Saturday morning and I had agreed to take part in a teaching session as it meant I only had to wait just over 2 weeks for the procedure. By 10:30 I was wristbanded, cannulated and off to change into a pair of very stylish paper boxer shorts with a velcro flap at the back. Once I had donned hospital and dressing gowns it was into the male waiting area until they were ready for me.

The Gastro registrar appeared and explained that he would start off then hand over to the lead consultant when we were joined by the audience (via a video link). We agreed I would have minimal sedation as I wanted to be able to watch the images and ask questions.

He lead me down to the procedure room where I was greeted by the nurses and given the sedation. I was asked to adopt a fetal position and, with a liberal handful of KY jelly, the scope started it long journey northwards. The image appeared on a large screen above us. In the bottom left hand corner there was a feature I hadn’t seen before. The consultant referred to it as the “sat nav” and it showed the relative position of the endoscope in the colon.

It was not an easy journey as my sigmoid was tending to loop as the scope attempted to pass through. There was a lot of changing position – lying on my right side, left side or back – and lots of pressure put on my abdomen by one of the nurses pushing down. It was also a long journey as the aim was to go a short way into the small intestine, past the anastomosis.

In the room next door my regular consultant was acting as chaperone to the group of international gastroenterology students who had come to St.Thomas’ to see “how we do it” in the UK. The screen on the wall flickered into action and two way communication was established. He briefly outlined my Crohn’s history and I was able to fill in some of the details. He explained the MRI issue that needed resolving and called up a copy of the report from my electronic file.

With a lot of perseverance, and gas to inflate the gut, the scope had reached the rejoin. I wonder whether the distraction of the video link caused me to relax and let the scope pass more easily. From then on the consultant gave a running commentary on what appeared on the screen. It was fascinating and informative. There was a debate between the 3 gastros as to which Rutgeerts score they would give my anastomosis. Was it i0, i1 or i2? The conclusion – i0.

Next they went through the MRI report and the scope was moved to the locations identified to see if any strictures were present. None found. One of the consultants remarked – “Scope 1 – MRI Scan 0”

One thing that was apparent throughout my gut was a slight reddening (erythema). The scope was zoomed in to examine it and to look for any tell tale signs of active Crohn’s but found nothing. The consultant decided to take a few biopsies. I had never seen this done on previous scopings so watched with a mixture of interest and cringing. What looked like a small crocodile clip appeared from the end of the scope and, under voice control, nipped into the wall of my gut. I waited for the pain but nothing, just a small trickle of blood. He decided to take a deeper sample so the device went back into the same location and took a further bite.

By now the scope had been in for about 45 minutes and it was finally time for it to be withdrawn. Always a relief. But what about the raised calprotectin level? They would have to come up with a non-Crohn’s explanation for it. The lead consultant bade farewell and I was wheeled out to Recovery. Experience over. When else would you get a chance to listen in to 3 leading gastros discussing your case and with the evidence before your eyes?

CT SCAN – East Surrey Hospital 2009

My last CT scan took place before I started blogging in earnest so I didn’t write a full account at the time. It is, however, a very significant test in my history of Crohn’s and is the procedure that confirmed surgery was inevitable. I can remember I was desperate to have the scan as I knew things were going very wrong internally. Rather than just book an appointment I explained my predicament to the appointments clerk and said that I could be available at fairly short notice should a cancellation arise. It worked and I was seen within a few days.

I don’t remember much about the actual procedure apart from sitting in the waiting room having been told to arrive an hour early to drink some liquid. The liquid turned out to be water and I was presented with a litre jug and a glass. I wasn’t sure how I would get through it all so decided to set myself a target of downing a glass every so many minutes. It was a good plan until a very apologetic nurse appeared with a second litre jug and said I should have given you this one to drink as well. Daunting.

When I went for my next outpatient’s appointment in June the radiologist’s report was not available. The scan itself was on the system so my consultant opened up the file and we watched it on his computer screen. The first thing that struck me were the large areas of solid black that appeared. To my untrained eye they looked serious and I wondered if they represented growths in my abdomen.

Luckily they were just air pockets which show up as black voids.
My consultant explained that the scan needed an expert to fathom out what was going on. He was not knowledgeable enough to be able to interpret what we were seeing.

It wasn’t until the next appointment in early August that I was told the CT report was now available. The delay was because of the complicated picture with both ileal disease and the suspicion that I was fistulating from there into other parts of the small bowel, possibly the sigmoid. The suggestion was that I may have a localised perforation “with no definitive collection”. My consultant put it in layman’s terms – “It looks like you’ve got an octopus in there” and hence the name of this blog!

FIBROSCAN – Monday 12th November 2012 – St.Thomas’

This is the non-invasive alternative to a needle biopsy. To quote from the unit manufacturer’s literature – “a mechanical pulse is generated at the skin surface, which is propagated through the liver. The velocity of the wave is measured by ultrasound. The velocity is directly correlate to the stiffness of the liver, which in turn reflects the degree of fibrosis – the stiffer the liver, the greater the level.”

For this procedure you lie on a bed with your right side exposed and right arm above your head. Some jelly is applied to the probe and then it is placed against your side and triggered to send a pulse. This is repeated 10 or so times.

The machine then aggregates the scores and gives you a value. Mine came out as 7.2. The nurse said that up to 5 was normal and above 12 would cause concern therefore my value showed that there were some fibrosis. (A second Fibroscan in 2017 had increased to 7.8)

FLEXIBLE SIGMOIDOSCOPY – September 2010 – St.Thomas’ Hospital

Just like a colonoscopy but with a smaller, shorter endoscope. The surgeon, who would be carrying out my ileostomy, wanted to have a look for himself to see if there were any fistulas into my lower colon.

LIVER BIOPSY – Wednesday 12th December 2012 – St.Thomas’ Hospital

The day of the liver biopsy had arrived. I’d covered all the bases so it should go smoothly. This is a standard procedure that is done every day but for some reason I’ve found the thought of it quite daunting. Not the actual procedure itself (although this is what Patient.co.uk says on the matter – “Although liver biopsy may be an essential part of patient management, it is an invasive procedure with a relatively high risk of complications”).

Start time was set for 9:30 at St.Thomas’ and the letter said be there 30 minutes early to get prepped. I needed to be escorted on the journey home so my long suffering wife accompanied me.

We arrived at St.Thomas’ well before 9:00 and made our way into the warren called Interventional Radiology. I booked in with one of the nurses and we were shown to a waiting room. The nurse came back with the consent form to start filling out and then disappeared.

About ten minutes later I thought I heard my name mentioned together with “Where is he? They’ve been looking for him for 20 minutes”. A little bit disconcerting. We sat tight and the administrator appeared and said “Your platelets are very low and they are concerned about the procedure. You were expected in last night to get prepared. Did anyone call you? They’re going to try and ring you on your mobile”. I checked my mobile but hadn’t missed any calls.

At this point I could see the wheels coming off the wagon. Luckily I had brought with me a copy of the email trail which explained who I had spoken to and what I had done to make everything, supposedly, go smoothly. I explained all this to the administrator. She disappeared for a while and then returned to say that they were waiting for a call from one of the doctors to see how they wanted to proceed. By now we were approaching 9:30 so I could see my “slot” disappearing.

After a few more minutes the nurse re-appeared and put on my patient wristband. This was a good sign and then another nurse appeared with hospital gowns and slippers but told me not to put them on until the doctor had run through the consent form and I had signed it.

A few more minutes and the doctor appeared. Good news. The procedure was going ahead. She went through what they were going to do during the procedure and what the various risks were. The main ones being bleeding from the puncture wound, damage to the biliary ducts and not getting sufficient of a sample therefore needing a further procedure at a later date. I signed the form and then changed into the gowns. Being an upper body procedure you only have to strip to the waist.

I went into the preparation area to have a cannula inserted. Straight into the vein in one go. At 10:10 I was taken down to the theatre and lay on my back on a trolley with my arms over my head. Two doctors introduced themselves and proceeded to scan my liver area with an ultrasound probe. They discussed the best entry point and route for the needle. Once they were happy with where it was going one doctor took over and it was time to get the area ready for introducing the biopsy needle. The area was cleaned down and a sterile sheet stuck in position with an opening at the puncture site. Ready to start.

First, local anaesthetic was injected around the area. The biopsy needle was then slowly introduced through the skin, guided by the ultrasound scan. There was one point which sent a short, sharp pain through my lower abdomen and that’s when the needle passed through the outer membrane of the liver. I was expecting the needle to go straight in, take a sample, and then be quickly withdrawn but the process actually takes a lot longer as it is slowly guided into position. Every so often I was getting a sharp pain in my shoulder. I’ve learned not to “be brave”, and keep quiet, as the pain may indicate a problem. I told the doctor what was happening and she adjusted the needle position accordingly. I don’t know exactly how long the whole thing took, probably 50 minutes all up. It was quite a relief to hear the words “All finished”.

I was told to roll onto my right side as this applies pressure to the wound and helps it seal. Back in the Recovery Room the nurse explained that I had to stay on my side for 2 hours. After that I would be able to lie on my back and eat and drink but would need to spend a further two hours in Recovery before I could go home. I was wired up to a blood pressure/heart rate monitor and every few minutes one of the nurses would check to make sure everything was OK. I rang my wife to tell her what time I could be collected and then settled down for the two hour wait before eating.

Once the two hours were up I was allowed to roll onto my back and sit up. I was presented with an NHS Snack Box – sandwiches, crisps, yogurt, fruit juice and a chocolate biscuit. Never seen one of those before. I had some questions, mainly to do with what to look out for that would indicate if something was going wrong. The nurse patiently explained the potential signs of trouble and answered my more general questions.

The next two hours passed fairly quickly and just before 15:00 the doctor, who had carried out the procedure, came to see me to make sure everything was OK and sign me off. My wife had turned up so it was a quick change out of the gowns and we set off for the station. I never did get to the bottom of “we were expecting him in last night”.

(BONE) MARROW BIOPSY – Wednesday 2nd October 2012 – Guy’s Hospital

My initial reaction when this procedure was first mooted was “so you’re going to push a large needle through my hip bone and collect some marrow all without the aid of a drill?”

The procedure was planned for mid-afternoon so I went into work as normal. I told various colleagues that I wouldn’t be around after lunch and explained why. Every single one of them uttered the same 3 words “that sounds painful”. After you’ve heard it for the umpteenth time a few nagging doubts set in. The previous week I had asked the haematologist if it would hurt to which she replied “you’ve got Crohn’s and had surgery. You’ve dealt with pain! This will be nothing by comparison”.

Having checked into the clinic the nurse came over and fitted an identification wristband. She said that I shouldn’t have to wait too long. When the doctor appeared. Her first reaction was “have you come alone?” That sounded a bit alarming. I asked why I would need to be accompanied and she replied that most patients were nervous about the procedure and liked to have someone with them. Whatever.

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

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

Instruments of Torture
Bone marrow biopsy slides

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

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

It takes a fair amount of force to push the larger needle through the outer layer of the bone. I could certainly feel it as it went deeper in. It wasn’t so much pain as a dull ache that traveled into the leg. After a couple of minutes of pushing the needle into the right depth it was withdrawn and the sample released. She was very pleased with the resulting core and set about dressing the puncture wound.

Bone marrow core

I then spent 15 minutes lying on my back whilst the blood clotted and sealed the wound. I was told that a nurse would come and tell me when I could go. After 20 minutes or so she came in and looked at the wound. It was fine so back on with my shoes and down to the station to catch the train home.

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

Unfortunately when the aspirate slides were examined they were found to be too contaminated with clotted blood. A few weeks later I underwent the whole process again but this time with the use of Heparin to avoid the clotting.

MRI SCAN – Monday 30th April 2012 – St.Thomas’ Hospital

I hadn’t had an MRI scan before so wasn’t sure what to expect. The main thing I’d been told was that some patients found the whole process claustrophobic. Because the scan was concentrating on the digestive system I wasn’t allowed to eat for the 8 hours prior to the test and was asked to arrive 1 hour early to drink a “special fluid”. This fluid looked very much like wallpaper paste but was lemon flavoured. There was a litre to drink and as I got closer to the bottom of the jug the consistency felt like wallpaper paste. Next time I have to drink MRI prep I’ll make sure I keep stirring it throughout.
The nurse then put a cannula into my arm ready for the contrast dye to be introduced.

When it had had time to move into my system I was taken into the scanner room. You’re confronted with a large, ring doughnut shaped bit of kit with a trolley that slides in and out. I was asked to lie face down on the trolley with my arms above my head. Not the most comfortable position when you’ve just drunk a litre of liquid. The radiographer explains what to expect and tells you that at various points within the test process you will be asked to hold your breath. Didn’t sound like a problem but you have to exhale first and that makes it a lot more difficult. You are given a set of headphones to wear as the machine is “quite noisy”. At least I didn’t get claustrophobia as I went into the tunnel feet first.

She wasn’t kidding about noisy. The best way I can describe it is being caught in the middle of a game of space invaders. The machine makes some very loud sounds and then, towards the end of the first test session, the table you are lying on starts to vibrate. A very strange feeling. The contrast dye is then introduced and the whole test sequence repeated.

When the tests were completed another nurse asked me how I was getting home. I said by public transport. He replied that the litre of liquid that I had just drunk was specially formulated not to be absorbed by the body and that I might want to wait around a bit before catching a train. I then realised the significance of his comment but not being one to shy away from a challenge, decided to jump on the train and see what happened.

I’m pleased to say that nothing, not even a hint of having to rush off to the loo. In fact the effect of the prep liquid was very short lived.
The results weren’t available straight away as they had to be interpreted by an MRI radiologist. There was a three week wait before I saw my usual consultant.

(St.Thomas’ have since changed the “special” liquid for Mannitol, a foul tasting solution)

MRCP SCAN – Thursday 5th July 2012 – Guy’s Hospital

The consultant wanted to have a look at my spleen and liver which meant no need for fasting beforehand or having to drink any special fluids. This time I was laying on my back, going into the machine head first. This was a lot more comfortable that the previous scan, in April, where I had to lay on my front with my arms above my head.

The whole procedure lasted about twenty minutes and was slightly less noisy that the St.Thomas’ machine. Because I knew what to expect I found the breathing out and then holding one’s breath a lot easier to cope with. Halfway through the radiographer said they were now going to inject the marker dye into my arm. Usually you can feel this cold liquid coursing through your veins but this dye must have been at room temperature as I never felt a thing.

SeHCAT SCAN – 29th July 2014 – St.Thomas’

A simple procedure for measuring the level of bile acid malabsorption. It involved a trip to St.Thomas’ Nuclear Medicine Dept. to swallow a radioactive pill and then return three hours later for scans – 5 minutes lying on back and then repeat lying on front. Then a further visit, one week later, for follow-up scans. The system then compares the two and works out how much of the radio active tracer has remained in the system and from that the bile acid absorption.

UPPER GI ENDOSCOPY – Monday 3rd September 2012

Back to St.Thomas’ Hospital, this time for an endoscopy……at least that’s what I thought. Of all the tests I find endoscopies the worst to deal with and would always choose to be fully sedated. The implication of sedation is not being able to drive for 24 hours afterwards and I really needed the car the next day so I took the decision before I went in that I would only have the throat numbing spray and nothing else.

I had assumed that the doctor would just be having a look down my upper GI tract to see what state my varices were in. Wrong! She explained that the intention was, if necessary, to treat the varices by banding, and for this I would need to be sedated. I would also need to have the whole procedure repeated in another three weeks and then again in a further three weeks.

She went through the risks associated and got me to sign the consent form. I then had a cannula inserted in the back of my hand and I was ready for the procedure. After a few minutes I was wheeled into the testing room, had a couple of squirts of throat numbing spray (xylocaine – tastes of burnt bananas), gripped a camera guide between my teeth and then the sedative was injected into the cannula.

Next thing I knew I was lying in Recovery. When I had woken up sufficiently I was given a copy of the endoscopy report that would be sent to my GP. The doctor had found three large varices with high risk stigmata and had applied 6 bands to them. The nurse told me that I must only have liquids for the next 24 hours and then three days of “sloppy” food. Now maybe it’s a man thing, but the sandwiches I had brought with me looked very appetising, so I waited a while and then tucked in, ignoring the nurse’s advice. Maybe stupidity is a better description because it did hurt swallowing and I know not to do it again.

Old Dog, New Tricks

A post because of Crohn’s, not about it.

Whatever else you can say about Crohn’s Disease it certainly does give you the chance of new experiences, mostly unpleasant, to be honest. I won’t list the nasty ones here as they are covered in the video at the end of this post. I thought I’d record how I dealt with this opportunity in case others get a similar chance to raise awareness of IBD.

It’s something I’d wanted to do for a while. I suppose it stems from a reawakening of the “performing” instinct that first showed itself when I was  in a band. That was around the time I was diagnosed with Crohn’s.

mav_lak_2In this instance I really wasn’t sure what to expect. A fellow patient at St. Thomas’ Hospital was due to talk to some undergraduate nurses, about “Living with IBD”, but then found that they were double booked that day. Would I step in and do it instead? Of course I would, after all how difficult would it be to talk to a few nurses? The date was set for 5 weeks time.

I wouldn’t need any preparation. I’d lived with IBD long enough to write a book. I would just turn up and talk, or so I thought. The last thing I wanted was to read from a script but, after some more thinking, decided the least I should list out all the topics that needed discussing.

Years ago I dismissed mind maps as more “management clap trap” and then actually drew one and have been sold on them ever since. It would help clarify my thinking. Here’s what I came up with :

mind_mapAt this point  I found out that there would be around 200 nurses, in a proper lecture theatre and  I would be talking at the end of the afternoon. It dawned on me that to do the subject justice, and not short change the nurses, I would at least need some notes and something to keep everyone awake. I tried doing a run through, just using notes, and it was terrible – stilted, hesitant, repetitive…..  I would have to write the talk out word-for-word, the very thing I didn’t want to do.

I find that simply reading through what I have written doesn’t pick up  over used words or even ones that are missing. Much better to hear it being read. I found that the software I use has the facility to convert the text to speech and save it as an audio file in iTunes. I can then listen to it on my iPod.

After several iterations, including two read throughs to my wife, I was finally happy with the contents. Maybe if I then listened to it endlessly it would become engrained in my memory and I would not need notes.

After half-a-dozen listenings it hadn’t worked. I would have to work from a script after all…..

When I got to the theatre, with a real live audience, it suddenly became a lot easier. I did use the notes but just to make sure I didn’t forget anything (which I still did). I had taken a small camera with me but unfortunately didn’t get there in time to set it up properly so the sound wasn’t brilliant.

The resulting video was rather long, all in one go, so I’ve split it into three parts. Of the three I think that the second one covering surgery and stomas is the most representative. I’ll let you judge the result.

Kings College Hospital, Lecture Theatre

A little further down the road?

5th September 2016 – Gastro Appointment – Guy’s Hospital – 10:20am

…the story so far can be found in the post “Crying Wolf”

Today’s appointment was to get the results of the MRI scan I had five weeks, or so, ago and then work out the way forward to get my health back on track.

It was the first appointment following my retirement so no chance to just leave the office for an hour to attend. It would need a special trip and chance to suffer the reduced timetable operated by Southern Rail. Having left home in plenty of time I arrived at Guy’s only two minutes before the due time. Almost immediately my name was called for me to be weighted. I had lost around 6 kilos since my last appointment. I asked the nurse to put a note on my records that I wanted to see my usual doctor. “No problem”.

Being weighed allows you into the inner sanctum, the inner waiting area, from where you are collected by your consultant. A student approached me and asked if I would be prepared to take part in some genetics based IBD research. I’m always more than happy to help so he left me a document to read and would talk to me after I had seen the consultant.

The waiting area was remarkably quiet. It’s been jam packed on previous visits and I’ve waited over an hour to be called. I’ve been preparing to give a talk on “Living with IBD” as part of a lecture for undergraduate nurses on chronic conditions. I had intended to do it completely off the cuff but I have come to the conclusion that is unrealistic. I’ve written out what I want to stay and the software has then converted it to speech so that I can listen to it on my iPod. This seemed like a good time to give it another listen.

I was miles away, submerged in the narrative about weight loss and fatigue in IBD, and then realised my name was being called. It was my consultant. I apologised for appearing to be on another planet and we made our way into the consulting room. By now it was 10:50am.

I had my obligatory list of questions with me :

  1. Results of colonoscopy 13th July 2016 – “ongoing mild colonic Crohn’s Disease. Previous colonoscopy” – 25th February 2015 – “mild, patchy erythema throughout the colon, however no ulceration seen”. Has there been a change? Does it need to be treated?
  1. Results of MRI scan?
  1. BAM – could this be causing weight loss etc. Treatment – Questran (low tolerance) Colesevelam.
  1. Blood test organised for 2 weeks. Have asked for cholesterol to be checked

Starting with the 1) it did suggest that the Crohn’s has returned albeit mildly. I mentioned that my last calprotectin level had been elevated – around 425. He called up all my results and drew a graph which showed that the last result did not follow the trend. “Collect a sample pot on your way out and we’ll re-run the test in case that was a rogue value. Let me know when you drop the sample in so that I can keep an eye out for the result.”

I asked about potential drugs to treat the inflammation. (Usually I would have been kept on a maintenance dose of Azathioprine but the onset of thrombocytopenia back in 2008 had made this a non-starter). He explained that there were drugs that specifically targetted the colon that were used to treat ulcerative colitis. He mentioned a form of Budesonide. I have subsequently looked this up and found a NICE document about Budesonide multi-matrix (MMX/Cortiment). It is formulated to release at a controlled rate throughout the colon to minimise systemic absorption. The licensed dose is 9 mg in the morning, for up to 8 weeks. It was licensed in October 2014 for inducing remission in mild to moderate active ulcerative colitis in adults for whom aminosalicylate treatment is not sufficient.

2) What did the MRI scan show? Strictures in my colon but they hadn’t shown up on the colonoscopy. Usually a colonoscopy trumps an MRI scan so this was an unexpected result. He proposed to take the results of both to the next MDM (multi-disciplinary meeting) to try and come up with an explanation.

It also showed adhesions but the fact they existed was not news. Since shortly after my reversal I had been complaining of an ache around the anastomosis .

3) Given the very variable nature of my digestive system and my recent weight loss I wondered if it was finally time to bite the bullet and start taking a sequestrant to treat my severe bile acid malabsorption. I had been fighting shy of taking yet more drugs and have been controlling it Loperamide.

I asked if it would be possible to prescribe Colesevelam (the tablet form) rather than Questran (powders) as I had read many reports of the former being easier to tolerate. I was aware of the cost differential, a factor of 10. He said that for the good of the health service budget I should try the Questran first but this would be a discussion for me and my GP.

4) I mentioned that I had a blood test organised for a couple of weeks time and would send the results through to him. I had asked for a cholestrol check to be carried out.

He would organise my next appointment once the MDM had discussed my results. He then took me back to the student doing the genetic study and I spent 10 minutes answering questions and spitting (saliva into a sample tube).

Where did that get me?

I’ve learnt about the possibility of a new drug to treat the inflammation in my colon and I’ve set in motion potentially directly treating the BAM. I think I’ll leave the decision on that one until my next appointment when we have an answer on colonoscopy/MRI scan conflict.

…and in the meantime an old client has called me up to see if I would be free to do some work for them. Retirement will have lasted precisely 5 weeks…

Crying Wolf

Crying Wolf (or maybe not)

I started writing this post a while ago but for one reason or another didn’t get round to finishing it. (My wife would say it’s a “man thing”). I’m not sure it will add greatly to the body of knowledge about Crohn’s but, from a purely personal level, it allows me to keep a record of my appointments and procedures.

I’m returning to a subject I’ve written about before but this time the effects are worse and have lasted longer, sufficient to make me very concerned.

On 5th May I had an annual check-up with my GP and had pre-empted the appointment with a full blood test. The results came back OK except for lymphocytes and platelets (expected). I emailed a copy to my gastro consultant and mentioned that I had been getting abdominal pain for the last few weeks and rushing off to the bathroom. He replied that I should have a calprotectin test and would have a sample pot sent to me (hopefully).

The symptoms are a pain around the midriff; extreme tiredness – so much so that I can get in from work, have dinner, then collapse on the sofa and wake up at eleven ready to go to bed; but most worryingly, and not wanting to get too graphic in a blog that may be read by non-IBD sufferers, let’s just say the phrase “through the eye of a needle” comes to mind.

I’ve been told told that if you can visualise  pain it is much easier to deal with. Mentally I lined up the suspects. The “upset stomach” could be from :

i) a virus picked up on the train up to London
ii) eating something dodgy (I did eat out in a restaurant in Highcliffe one day and the food was pretty disgusting)
iii) wearing a very tight belt whilst doing a lot of physical work

or the one that constitutes the “elephant in the room” – five years of Crohn’s remission was at an end

Ironically the last time I saw my Gastro consultant I had told him I felt very well and couldn’t see why we didn’t extend the gap between appointments from six to twelve months. I was now regretting it and had started to notice my weight was dropping and the ache around my anastomosis was getting more frequent.

I would have to see what the calprotectin test showed. The sample pot had still not arrived so I took it upon myself to get one from my GP, fill it with the “necessary” and drop it into the IBD Nurses at Guy’s Hospital.

The result came back on 14th June. My consultant emailed “Interestingly it has risen to 436” (previously 179) and suggested that a colonoscopy ought to be the next step. “Would I be OK with that?” Not a problem but I was starting to wonder if I was “crying wolf” as ever since I had dropped the sample in, I had started to feel a lot better. I think this must have been wishful thinking. Something had caused my calpro result to keep rising and my weight was still falling (down to 82kg from a high of 91kg).

The colonoscopy was duly booked – 12th July. I wondered how that would allow my small intestine to be seen. My consultant wrote back  that the colonoscopy would be able to reach just past the anastomosis, the most likely place to find inflammation if it had restarted. If the scope showed nothing then I would need further tests by which I assume he meant a scan. I’m sure he would not want to risk a Pillcam.

This post will continue after (tomorrow afternoon’s) scoping. One more sachet of Citrafleet to take………

The Colonoscopy

I’m not going to describe the whole colonoscopy process, just the things that made this one slightly different and the conclusions.

Firstly taking the prep timing has changed at St. Thomas’. For an afternoon procedure instead of taking both lots of prep solution on the previous day they are now split and the recommendation is to take the second sachet at 9:00am on the day of the procedure. This didn’t seem like a good idea, especially with a travel time of nearly two hours on public transport, I decided to take that second dose at 5:30am and I’m glad I did. It had only just finished “taking effect” at 10:30am when I was due to leave home.

Secondly, and this one would make a good subject for a fashion blog, the very flimsy paper briefs that one previously had to put on have now been replaced with some very stylish dark blue paper boxer shorts with a large slit up the back. Modesty prevented me from taking a selfie and posting it.

For the first time ever the nurse had problems finding a vein for the cannula. After two attempts with my right arm she handed me over to her colleague. Luckily she tried the other arm and was successful.

cannulaOne of the doctors came in to get the consent form signed and I explained that I wanted to keep alert throughout the procedure, so that I could ask questions, and mentioned that my weight was a lot lower than previous scopes. He decided to give me less sedative than usual and that worked fine.

Whilst my main GI consultant watched on, the doctor I had seen earlier started the scoping. As the camera made its way ever onwards it started to show mild inflammation in the colon but when it reached the anastomosis the inflammation disappeared. The doctor decided to see how much further he could get the scope into the small intestine, made possible by my ileocaecal valve having been removed during my ileostomy

Normally I don’t notice the movement of the camera, the air to expand the gut or the liquid used to clean the lens but that final push was the exception. I ended up being asked to roll onto my back which made it a little  easier. Once again there was no inflammation and with that the scope was withdrawn.

The conclusions were : ongoing, mild colonic Crohn’s disease but no evidence of recurrence in the neo-Terminal Ileum (the most likely place for it to reappear following surgery).  My consultant said that colonic Crohn’s would explain the high calprotectin result but he was clearly most concerned about the weightloss (down below 80kg for the first time since before my ileostomy) and sent off a request for an MRI scan.

By 15:30 it was time to leave St.Thomas’, clutching a copy of the report and accompanied by my escort , a fellow GSTT IBD patient who gave up her afternoon to help. Thank you. (I have since been able to repay the favour by agreeing to talk to some undergradute nurses about “Living with IBD”).

On the way out we called into the  MRI unit to see if it was possible to book a date there and then. Unfortunately bookings were done from a different location but the receptionist confirmed that the request was already on the system and marked “Urgent”. I should be seen within 2 weeks.

The Scan

After a couple of days I tried ringing the MRI Unit to find out if they had allocated a date yet, after all, if I was to be seen inside two weeks, surely I would need to be on the schedule by now. Disappointingly the answer I got was that they were working through the bookings “in order”. It didn’t make a lot of sense.

I left it over the weekend then tried again. This time the person I spoke to must have realised the urgency and I was given a date of Friday 29th July, at Guy’s, 12 days from the request going in. I would not need to be accompanied this time as there would be no sedation involved. I then received a letter for a follow-up gastro appointment to discuss the results – 5th September.

The day of the scan arrived. I made my way into the unit. It was newly refurbished and extended and had only been open a few days. The number of scanners fhad been increased from two to four.

You are asked to arrive early as there is a prep solution to drink. I knew what to expect – a thick, lemony liquid with the consistency of wallpapaer paste. I must remember to keep stirring it. But no, it was all change. I was given a one litre bottle of a clear fluid and a glass of water as a “chaser”. The nurse told me to drink a cup of the liquid every 5 minutes. She mentioned that it wasn’t that palatable and she was right. I must have managed to drink about three quarters of the bottle before it was time to be cannularised.

prepFor the second time in 3 weeks the nurse had difficulty in finding a good vein that would take the cannula tip all the way in. On the third attempt, using the other arm, it was finally in place.

I’ve described MRI scans, in detail, elsewhere in this blog so won’t repeat it all here. They are noisy machines so I was rather surprised to have fallen asleep towards the end of the procedure. I think it shows just how tired I have been recently.

A radiologist would interpret the results and have the report ready for my gastro appointment.

Harmatology

Just a routine, 12 monthly Haemo appointment. I didn’t have a list of questions because nothing had changed since my last visit. The doctor called up my records on her screen and said, in passing, “just to put your mind at rest – the MRI scan didn’t show anything unexpected, just some mild stricturing in the small bowel which had been seen before.” Interesting. I wasn’t aware of the strictures. Something to discuss on 5th September. To be continued…..