My A to Z of Crohn’s

30th December 2015 – I’m starting to write a book, maybe it’s more accurate to call it a journal,  showing how I went from diagnosis in 1978 to my current state of remission.

From it I have extracted an A – Z. It’s not meant to be an exhaustive. Some items are common to hospital or surgery and the rest are more specific to Crohn’s/IBD and related complaints but these things have amused, surprised, or quite simply, scared me along my “Crohn’s Journey”. (Apologies for the “J” word)

I hope you learn a few new things and experience none of them…

….and I hope you will read my book when it sees the light of day.

(In the grand scheme of things my experiences pale into insignificance when you read some other Crohn’s patient’s stories of both surgery and their ongoing concerns)

Anaesthetist – the last person you see before going into the operating theatre. The one that says “I’m just going to give you something to relax you”. Don’t believe them unless your definition of relaxation is being knocked out cold and waking up several hours later, or am I getting mixed up with a good night out in Tooting? The next time you wake up you should be in Recovery (or Accident and Emergency if it was Tooting).

This may seem odd but I really look forward to the point at which you are about to get the sedative. From that point onwards you are totally in the hands of others. There’s nothing left for you to do or worry about that can influence what is about to happen. You can let fate take over completely. You’ll go to sleep and hopefully, when you wake up, the reason you’re in this situation will have been resolved.

On a more morbid note the anaesthetist could be the last person you will ever see so try and smile at them.

Banding – another new term on me and describes the action of “killing off” or “obliterating” a varicose vein by tying it with a rubber band. My veins (see Varices) were very inconveniently located down my esophagus so required a specially adapted endoscope to place the bands. After the procedure you can only eat very sloppy food for 48 hours as you don’t want solids to dislodge the bands before they have taken effect. BTW – I’ve just completed my 10th procedure.

Endoscopy Report

Bile Acid Malabsorption (BAM) – not something you see discussed very often. All the fun of Crohn’s-like bathroom dashes but without the inflammation. According to NICE the vast majority of patients, who have had their terminal ileum removed, will suffer from it. I wish I’d been told about this before they removed mine.

If I’ve got this right then your stomach digests food by dissolving it using bile acid. The mixture then passes into the small intestine and when it gets to the terminal ileum area the bile acid gets reabsorbed into the biliary system ready for the process to start again. If you’ve had the terminal ileum removed there is nowhere for the acid to be re-absorbed so it passes into the colon. The colon is not designed to cope with this level of acidity and its first reaction is “evacuate”, you can guess the rest.

There are various medications available to counter the effects of BAM. I manage with just Loperamide.

Bile Bag – the name says it all. I’d never heard of or seen one until I was recovering from my reversal operation in June 2011 and my digestive system had gone into lockdown. I was suffering from really bad nausea which the surgeon said affected around 25% of patients undergoing colorectal surgery. The decision was taken to relieve the pressure and I ended up with a tube up my nose and down into my stomach. Whatever comes out needs to be collected and that’s where the bile bag comes into its own.

Bone Marrow Biopsy – just the mention of this procedure is enough to make my GI consultant squirm. My initial reaction was “so you’re going to push a needle through my hip bone and take a sample of the marrow within? How does that work then? Can’t see that’s possible as bone is hard. You don’t need a drill do you?”

Despite my scepticism it is indeed possible to push a needle, with a little effort, through bone. I even ended up having it done twice. It stings a little but as the= haematologist said – “You’ve got Crohn’s, you’ve dealt with pain! This will be nothing by comparison”.

Cannula – the plastic tube with a sharp point that gets put into a vein, usually in your arm, to allow the introduction of fluids such as saline solution or blood transfusions. I’ve lost count of how many I have had during the last 35 years. They’ve been administered by nurses, paramedics and junior doctors. The first two have always been OK but letting a junior doctor near you with a cannula is a big mistake. I know they have to learn somewhere but I’d rather not be the guinea pig. I even asked the last doctor, who attempted a cannula insertion, if he was experienced in the procedure and he assured me that he was. Within an hour I had to have a new one inserted by a nurse.

Cannula

As you get more experienced at being cannularised, and especially if you are going to be on a drip for a while, you’ll get to know the best place for them to be positioned. Definitely avoid your elbow joint otherwise every time you bend your arm the flow stops and the alarm on the pump unit starts sounding. By preference the cannula should be sited somewhere that will allow you to eat, write, use a phone and go to the toilet without too much inconvenience.

One of my first experiences with a cannula was in 1979 when it was decided to feed me intravenously. The cannula was inserted just above my wrist and then a catheter was introduced than ran up a vein in my arm, over my shoulder and then turned back downwards for a few centimetres. It could have put me off for life as it took 5 attempts, two in my left arm and three in my right arm, before the tube was successfully positioned.

(If you’re wondering what the difference between a cannula and a catheter is – the cannula has the sharp end so is used to make and opening into a vein; a catheter has a blunt end and can be inserted into an existing orifice)

Colonoscopy – sticking a camera where the sun don’t shine. As with many procedures that you have to come to terms with when you have IBD the thought of what is going to happen is worse than the actual experience. I don’t find the colonoscopy itself too bad but I know that many do. It’s the 24 hour fasting beforehand that I struggle with.

I like to keep awake during the procedure as you get to see exactly what the consultant is seeing and if you have any questions they can be asked there and then. You find out what’s happening inside your guts in real time and don’t have to rely on being told after you wake up or at your next appointment.

Dexamethasone – a steroid – the work of the devil. Dexamethasone is like a steroid on steroids. About 5 times as powerful as prednisolone for the same tablet dose. It had been found that in some patients a short, sharp course of this drug could dramatically improve platelet count. I was about to have a liver biopsy and my platelets were very low so was given a dose of 40mg for 4 days. All was well for the first 3 days and then I started to get hiccups and an uncontrollable appetite but on day 4 I started acting as if I had Tourettes. Very odd. I mentioned this to my consultant some weeks later and he confirmed that steroids can have strong psychological effects. I won’t be taking those again.

Enhanced Recovery Programme – I had my ileostomy at St.Thomas’ Hospital in London and was given the choice of participating in their Enhanced Recovery Programme. I could have opted out but grabbed the opportunity with both hands. The pre-operative assessment, planning and preparation before admission mean that you are given comprehensive information on what will happen, when it will happen and the likely outcomes. Instead of going into the unknown when you enter hospital you already have a good idea of what to expect. I found it helped me to become incredibly calm about the whole situation.

Here’s a section from the NHS Institute for Innovation and Improvement as it neatly sums up what this is all about :

“The enhanced recovery programme is about improving patient outcomes and speeding up a patient’s recovery after surgery. It results in benefits to both patients and staff. The programme focuses on making sure that patients are active participants in their own recovery process. It also aims to ensure that patients always receive evidence based care at the right time.

Advantages of the enhanced recovery programme are:

  • Better outcomes and reduced length of stay
  • Increased numbers of patients being treated (if there is demand) or reduced level of resources necessary
  • Better staffing environment.

There are four elements to the enhanced recovery programme:

  • Pre-operative assessment, planning and preparation before admission.
  • Reducing the physical stress of the operation.
  • A structured approach to immediate post-operative and during (peri-operative) management, including pain relief.
  • Early mobilisation.”

Having read this explanation you will see how this fits in with the whole idea of “Active Patients” ie. ones who take an active role in managing their own health.

At St.Thomas’ you’re given the choice of participating in the programme. You can opt out but I grabbed the opportunity with both hands. The pre-operative assessment, planning and preparation before admission mean that you are given comprehensive information on what will happen, when it will happen and the likely outcomes. Instead of going into the unknown when you enter hospital for your operation you already have a good idea of what to expect. I found it helped me to become incredibly calm about the whole situation.

Part of the early mobilisation mentioned is being expected to drink fluids as soon as you come round in Recovery and then to be eating solids within 24 hours. A far cry from the 3 weeks “nil by mouth” that I had been through in 1979.

Fistula – yet another part of my learning process. It sounds like some unsavoury fetish but when I was told I had one I checked out its definition – “an abnormal connection between two structures”. Luckily mine were internal, between sections of intestine, so any leaking was kept inside but they can run from inside to outside the body and prove difficult to heal.

Flexible Sigmoidoscopy – a sort of Colonoscopy Lite. Before having my ileostomy the surgeon wanted to check what condition certain parts of my colon were in, so he carried out this procedure so would know what to expect once he wielded the knife.

A colonoscopy looks at the lining of the large bowel and may also look into the lower section of the small bowel. The scope used for a flexible sigmoidoscopy looked to be a much shorter instrument and only goes as far as the left side of the colon (which I guess means up to the sharp bend before the colon travels across the body). The tests require different preparation and sedation.

Gaviscon – disgusting aniseed flavoured pink sludge. As part of the attempts to clear the nausea following my reversal operation I was given a small container of Gaviscon to drink. The smell alone was enough to trigger a reaction but I gulped the whole lot down and within seconds…..well I won’t go into the details but suffice to say I felt a lot emptier afterwards and the pressure on my stomach was suddenly bearable.

It’s said that the most powerful of the five senses for triggering memories is the sense of smell. I am dreading ever coming into contact with anything that smells like it again as I’m sure my instant reaction will not be very pleasant for either myself or anyone within two metres of me.

Haematology – not my most favourite department and not because of the consultants’ abilities as haematologists but their inability to provide follow-up letters in a timely manner. This has now happened at two hospitals. On the first occasion the lack of the letter caused my reversal operation to be postponed. It all worked out fine in the end but I found not being able to persuade them of the urgency of the situation was very frustrating.

Maybe haematology is one of those specialities that is just “vague” because blood disorders are “vague”. I still do not have a definitive answer as to why my platelet count is so low. There have been lots of theories but no conclusive proof, despite tests and full blood counts. We’ve currently left it that I don’t seem to be affected by the low platelets so we don’t need to do any further investigation. I’m thinking that maybe this issue needs escalating.

Innocent Bystander – an unusual phrase to hear in a clinical setting. At the pre-op meeting the surgeon said that when he opened me up he was hoping to find that my colon was an “innocent bystander” ie. the colon was unaffected by the fistulas and adhesions which were present in the small intestine. The flexible sigmoidoscopy seemed to suggest he might be right but once the operation started……

Junior Doctors – the clue is in the name. It’s fascinating to observe the different ways they interact with the patients and how some are very relaxed with an excellent bedside manner and others seem to have had a humour bypass. Maybe it’s a cultural thing. I find myself, mentally, splitting them into two groups – those who should go on to pursue a research career and those who I’d be happy to be treated by.

Knowledge – since my diagnosis over thirty years ago the ability of the patient to gain knowledge of their condition(s) has grown immeasurably. This falls into 2 categories.

Firstly – generic information on Crohn’s, treatments, etc. If anything there is an overload of information available on the internet and a skill I would very much like to develop is being able to quickly sift out the good stuff.

Secondly – knowledge of your own personal medical records. In the UK, for a maximum cost of £50.00, you can request a copy of your medical records from your GP or the hospital(s) where you’ve been treated. I have found this has greatly improved my understanding of how my Crohn’s has progressed.


Loperamide
– or Imodium as it is better known. I first took Imodium back in 1979 to try and control the big D and after 2 weeks ended up in hospital with a perforated bowel. The pharmacist who had dispensed the prescription for one month’s worth of capsules had made a remark that 4 weeks was a long time to be on them. For many years I blamed the Imodium for ending up in hospital.

Fast forward to 2010. After the ileostomy my digestive system would not regulate itself and I was in danger of not being allowed home. The surgeon put me on Loperamide, up to 12 capsules a day, as required. I asked him if it was OK to take it long term and he said yes. Since then I’ve been on 2 tablets a day so my original theory from 1979 has had to be revised. The perforated bowel was the Crohn’s.

Metronidazole – is an anti-infection drug and has been found to be beneficial after surgery. I was put on it for 3 months after my reversal. For me there was one major side effect – my taste buds were shot. It certainly worked on the anti-infection front but I couldn’t wait to get off of it and to be able to taste food properly again.

Naso-gastric Tube – the bit that feeds the aforementioned bile bag. I can put up with most things in hospital but having a tube up your nose, down your throat and into your stomach has to rank pretty high on my “barely acceptable” scale. Probably the only thing higher on the list is nausea and since the tube was there to relieve the nausea it really was JUST the lesser of two evils.

Orabase – gloopy polyfilla for stomas. My stoma had started to become uncomfortable, or rather the area under the backing plate on the pouch was painful. From above all looked OK and I didn’t think to have a look in the mirror to get an all round view. What did make me sit up and take notice was the pouch filling with blood one evening. First thought – internal bleeding. Second thought – ring for ambulance.

Eventually it was found that there was an abscess immediately below the stoma which had burst but had bled into the pouch. I was patched up and sent home with instructions to see the stoma nurse the next day.

She was completely unphased by the situation (but then stoma nurses are always unphased or they wouldn’t do the job they do). I jokingly said to her that what we needed was some polyfilla to fill in the depression caused by the abscess and she produced a tube of Orabase. Problem solved and it never returned.

Pharmacy – the final frontier. The hurdle between hospital and going home. The one thing that stops you leaving at the time you planned s you are told by the Ward Sister that “you just have to wait for pharmacy to deliver your tablets and then you can go.” I have waited 5 hours on one occasion and there is nothing that can be done to speed them up. Guaranteed to bring on unnecessary stress.

For inpatients there is a way around the situation. Make friends with the pharmacist on their daily ward round and once you know when you are due to be leaving hospital ask them if they can have your tablets ready and locked in your bedside cabinet ready for discharge. I’ve tried this twice, and it works.

Primary Sclerosing Cholangitis (PSC) – a mouthful to say; an earful to hear; and a brainful to comprehend. I had been sitting in one of our local hospital beds for a few days, undergoing various tests and wondering what new complaint had caused the esophageal varices to be there and then burst.

It was my old consultant (the one who had treated me before I chose to move my care to St.Thomas’ Hospital), doing his ward round, who first mentioned Primary Sclerosing Cholangitis and then liver transplant in the same breath. There was no way I could take it all in so a little later I called over one of the junior doctors and asked her what the long named disease was so that I could look it up on the internet. She told me the name but suggested I might want to refrain from looking it up at present. That was reassuring!


Questions – I’ve learned never to be afraid to ask questions of nurses, doctors, consultants, radiographers etc. Take the opportunity to build your knowledge of your condition.

Reversal – rejoining the two ends of the bowel that formed a stoma, tucking it all back into the abdomen and sewing it neatly up.

Living with a stoma was less fraught than I imagined but I always knew that there was a good chance of the whole procedure being reversed 6 months down the line. I think this made the whole situation easier to deal with and I’m not sure how I would cope with a permanent stoma.

Rutgeert’s Score – this is “an endoscopic scoring system for postoperative disease recurrence in Crohn’s disease”. Yet another new term which appeared on the endoscopy report from the first colonoscopy after my reversal. I was given a score of i0 which is the best score to get and shows no lesions in the distal ileum. I also found the following reported on the Medscape website :


“Rutgeerts score provides prognostic information: 80–85% of patients with a score of i-0 or i-1 will be asymptomatic 3 years after surgery compared with fewer than 10% of those with a score of i-3 or i-4. Among those with a score of i-0 or i-1, the chance of clinical recurrence at 3 years is less than 5%, whereas endoscopic scores of i-2, i-3 and i-4 correlate with 3-year clinical recurrence rates of 15, 40 and 90%, respectively.”
   My three years were up in June 2014.

SAL – Surgical Admissions Lounge – I always thought that the night before your operation you were taken onto the Ward that you would be recovering in and they prepared you for surgery. Maybe a reversal is not considered major surgery or maybe the pressure on beds is too great but I was surprised to be given instructions to report to the SAL on the morning of the op.

It was all very “matter of fact” and probably contributed to my remaining calm throughout the wait to be called.

SeHCAT – or to give it is full name is 23-Seleno-25-Homo-tauro-Cholic Acid Test, which you probably realise is a taurine-conjugated bile acid analog. It tests for BAM and is one of the simplest from a patient’s point of view. You swallow a radioactive pill then wait an hour and get x-rayed. Repeat the x-ray one week later and compare the two levels. The difference shows how much has been reabsorbed and therefore how much has passed out of the system or has been “malabsorbed”.

St.Thomas’ Hospital – one of the leading London hospitals. Situated on the South Bank of the Thames, adjacent to Westminster Bridge and immediately opposite The Houses of Parliament. The colorectal ward is on the 11th floor and the view is truly spectacular. It must help with your recovery as there is always something to see and take your mind off of your current situation.

St.Thomas' Colorectal Ward
St.Thomas’ Colorectal Ward on the 11th Floor

I didn’t expect to end up in St.Thomas’ but my local hospital said that they simply didn’t have the recovery facilities that would be needed after such a major piece of surgery. I’m so glad that they referred me. The inconvenience of getting up to London was far outweighed by the excellent facilities that they have there.

Stoma – from the Greek for mouth and means an opening, either natural or surgically created. Operations involving the creation of an opening are suffixed -ostomy; the prefix describes where the opening is. My 2010 operation was an ileostomy ie. opening formed in the final section of the small intestine. I actually had two stomas – the one from the end of the small intestine and the end of the temporarily redundant large intestine.

(To visualise the next bit it will help if you’re old enough to remember “Spitting Image” on ITV and their puppet of Mick Jagger)

The use of a word meaning “mouth” to describe the opening seemed rather apt as I suffered a prolapse of the lower stoma and as a result it looked like Mick Jagger was trying to escape from my abdomen. A sort of “Alien” moment.

Transjugular Biopsy – the harder way to take a biopsy from the liver. As the name implies the biopsy needle is passed into the jugular vein in the neck and then travels down until it reaches the liver where the biopsy sample is taken. Right up until the last minute it looked like they would choose this route as my low platelet count meant there was a high risk of bleeding and by going the internal route any bleeding would be back into the vein.

On the day of the procedure the doctors decided they could carry out a conventional “plug biopsy” where the needle passes straight through the skin into the liver. All my concerns and mental preparation for the more tricky procedure were in vain or rather not in vein.


Thrombocytopenia
– the long name for low platelet count. There are several theories as to why my platelet count is so low. These range from long term use of Azathioprine; to an enlarged spleen; to “you’ve got bigger than normal platelets so you don’t need as many”; to the “it’s all too difficult to be certain” approach.

Upper GI Endoscopy – sticking a camera where most of the crap comes out of ie. through the mouth. I really don’t like this procedure. I don’t like the anaesthetic spray they use to numb the back of the throat (it tastes of burnt bananas) and I don’t like the gag that goes between your teeth to guide the camera.

Just once I had it done without full sedation. Never again. Nowadays I always ask to be put completely under, even though the recovery time is a couple of hours longer.

Varices – varicose veins, but not just any varicose veins. Ones that specifically develop in the linings of the esophagus and upper stomach.

How did mine get there? The explanation is too long for this post but the way I found I had them was fairly unpleasant and involved bringing up a large amount of congealed blood (which resembled redcurrant jelly) and then being rushed to hospital once the initial shock of the situation had passed and I had managed to call out for help.

I Googled varices and banding, and immediately wished I hadn’t. The first page I read said that 70% of those who have a variceal bleed will have it happen again and for a third of those it will be fatal. If I’ve got the maths right that’s 70% x 33% = 23%, so for almost a quarter of patients suffering variceal bleeding it will be fatal. I think you can see why Google and all that information now readily available on the web is a bit of a double edged sword.

Ward Round – the chance for the lead consultant to have a go at playing Sir Lancelot Spratt (character from the British classic film – “Doctor at Large” – it’s on YouTube – see below). They sweep into the ward surrounded by a gaggle of junior doctors and students. The bigger the group the better the opportunity to “shine”.

I find ward rounds very informative. You can usually learn a few things that you either haven’t asked or nobody has thought it necessary to tell you. It’s also interesting to compare the approaches of the different consultants and their explanations as to what is wrong with you, what they’ve done to you and what they have planned for you.

I’m far too old and crabby to be intimidated by the assembled crowd of eager, and not so eager, faces so I always make sure that I provide a foil to the consultant’s leading role.

Sometimes you really can’t wait for the round to begin. This has usually been preceded by a test for which you desperately want to know the results of or someone has said the magic words “You can go home when the consultant is happy with you”.

The worst thing you can do is go off for a shower only to find that when you return to your bed the Consultant, and attendant gaggle, has already passed though and will not be back until the next day. To avoid this happening you can either shower very quickly, being careful not to fall over, but it’s probably best to stay put in the ward until you’ve been seen.

I’ve used this clip elsewhere but every time I see it there’s a smile on my face.

X-Ray – bit TOO obvious. What about……

Xylocaine Spray – the taste of burnt bananas in an easy to administer spray. If you’ve had an upper GI endoscopy you’ll recognise this taste. The spray deadens the back of the throat so that you don’t feel the camera passing through. I’m finding that just thinking about the spray, and the mouth gag that follows shortly afterwards, is making me feel sick so that’s enough for now….

Y and Z – no interesting terms come to mind for these letters at present. Maybe title of this post should be changed to “The A to X of My Crohn’s ‘Journey'”

A personal view