At that time very few people had heard of Crohn's disease. I certainly hadn't. I was suffering the usual symptoms of "upset stomach" and having to rush off to the bathroom many times a day. It all came at a very bad time as I was starting the final year of my degree in Building. At first we blamed my condition on the dodgy, fried food I used to eat every lunchtime at the Wandsworth Grill - greasy bacon; greasy sausage; greasy omelette - there was a common theme - but eventually I decided to seek medical advice.
I first went to see my GP in the October 1977 to try and sort out the diahorrea as it was starting to get worse. He went for the obvious remedy - Imodium (Loperamide) and my long time on/off relationship with this drug began. Needless to say, it did not work as it treats the symptoms not the underlying causes. I felt very weak and was always very cold. It was decided that further investigation was required.
In March 1978 I was booked in for a barium enema. This was the first “procedure” that I had endured. It felt very undignified. Firstly it was necessary to ensure that my bowel was completely clear of all contents. Not usually a problem for a Crohn’s sufferer but to be on the safe side I took “prep” drinks the day before and then did not stray far from a toilet. I don’t remember much of the detail but it was probably a liquid made from senna pods.
At the hospital I changed into one of those hospital gowns that never meet at the back and are impossible to fasten as the ties have either been cut short or dropped off. In the x-ray room I was asked to lie on my front and a rubber tube inserted where the sun don’t shine. The barium liquid, with the appearance and consistency of milk, was introduced and allowed to flow in with the aid of gravity. When it was all safely inside it was time to clench hard and roll onto my right hand side to help it move around my system.
Once sufficiently distributed I had to clench even harder and lay on my back for the x-rays to be taken. So far so good. With the x-rays completed came the most worrying bit, having to get off of the trolley, adopt an upright position and then hope you made it to the toilet without losing any of the liquid. Have you tried walking and clenching at the same time? Your answer to that one is probably dependent upon a number of factors and lifestyle choices. It will be “Yes” if you are an IBD sufferer.
The outcome of this procedure was a diagnosis of "spastic colon" which nowadays would be called Irritable Bowel Syndrome (IBS).
|Advert for Nacton from 1961|
Over the course of a year I had gone from eleven and a half stone (73kg) down to eight and a half stone (54 kg). I didn't really notice as the change was gradual and I wonder whether some form of mental defence mechanism kicked in, but anyone who hadn't seen me for a while were taken aback.
I became weaker and weaker and finally went to see my GP again on 14th July 1978. Luckily he was on holiday so I saw a locum instead. He was shocked at what he saw and said that I needed to see a consultant immediately. If I was prepared to pay £25, the equivalent of £120 at 2014 values, I could see the consultant the next morning (Saturday) at his private practice in South Croydon. (I've since been told that my original GP had been censured for failing to diagnose another patient. Seeing his locum probably saved my life)
I'm not really in favour of jumping queues, just because you can afford to, but in this instance my mother paid the £25 and I saw the consultant the next day.
We made our way to his surgery just outside Croydon in Coombe Hill and were shown into a rather gloomy room dominated by a large desk. Dr. Parrish, a tall, thin, distinguished looking man, was sitting behind it. He took one look, and said “You need to be in hospital NOW! I will arrange for you to be admitted on Monday.”
|Dr. Parrish (centre) on his retirement from Mayday Hospital (Croydon Advertiser 22nd January 1988)|
I also had something else on my mind. Croydon Council were organising an outdoor concert in Wandle Park on Sunday 16th July. I had become involved in the organisation of the event and the band I played guitar in would be performing. We went over to the Park on that Saturday afternoon, after I had seen the doctor. The stage was set up but there was no roof and rain was forecast. My girlfriend (now my wife) didn’t want me to play as she thought I was so weak that I would collapse on stage. I didn’t want to pass up the chance to play at our biggest gig yet.
On the day of the gig it rained and rained and then rained some more. The first act "The Mark Stevens Band" performed their set under a flimsy sheet of plastic. As they played their numbers the roof was filling with water and leaks were appearing above the amplifiers. We decided it was too dangerous to go on. Water and electricity do not mix so we pulled out and in hindsight that was best all round. I probably would have collapsed.
|from the Croydon Advertiser|
I was admitted to the dreaded Croydon Mayday Hospital at 11:00am on Tuesday 18th July 1978, three months after my 22nd birthday. I say “dreaded” because it did not have a good reputation. I know the precise details of my admission because they are recorded on the ward and doctor’s notes that I have subsequently obtained. The nurse’s first impression was “looks pale and thin”.
The ward sister must have taken pity on this "young lad", only in there for tests, as instead of being put in a bed in the main ward I was given a side-room to myself. This was a great boost as I was allowed to have a television brought in and it was so much nicer when my girlfriend came in to visit.
|A particularly pathetic sight|
It’s interesting to read the consultant’s thoughts from his first examination. A lot of them were written in medical shorthand or diagrams, which I have been unable to decipher, but on the fourth page there are the words “probably Chron’s (sic) and U.C., exclude infections”. I looked very anaemic and blood tests confirmed this.
Friday 21st July 1978 - an x-ray followed by a sigmoidoscopy (a scope that looks at the rectum and the lower large intestine). During the latter procedure a number of biopsies were taken from the walls of my intestines, then it was back to another few days of resting.
Monday 24th July 1978 - a busy day with various x-rays, including a Chest, Abdomen and Barium follow through. The conclusions were :
"CHEST: No abnormality.
ABDOMEN: Supine. The colon is empty being consistent with the history of diarrhoea and there is an abnormal tubular gas shadow in the R.I.F.(right iliac fossa) suggesting an abnormal bowel.
BARIUM FOLLOW THROUGH: The upper small bowel appears quite normal. The lower ileum is somewhat dilated suggesting a mild obstructive effect and the coils appear matted together with some irregular outlines and thornlike ulceration. Absence of small bowel in the ileocaecal region is suggestive of a soft tissue mass here. As is often the case in acute Crohn's the terminal ileum itself and caecum are so irritable that there is very little barium in them on selected films but there is sufficient to show that quite a long segment of terminal ileum is markedly diseased with narrowing and irregularity and loss of normal mucosa. The caecum is deformed and cone shaped with a narrow irregular ileocaecal valve region. There is also quite a long segment of abnormal transverse colon.
Here again there is a cobblestone mucosal pattern and thornlike ulceration. The rest of the transverse colon shows no abnormality but as far as can be demonstrated on a follow-through I think the distal descending colon is also abnormal."
Reading this for the first time, 30+ years on from the events when I obtained the records, I am surprised that they didn’t decide to operate there and then to remove the narrowed section of the terminal ileum but chose to try drugs instead. I know that surgery is treated as a last resort but in this instance I would have thought my condition was sufficiently advanced to make it worthwhile. Maybe I was just too ill and anaemic for it to be worth the risk.
Tuesday 25th July 1978- It was decided I should be transfused with four units of blood to try and bring my Hb levels nearer to normal. It worked because the reading jumped from 9.5 to 13.3.
Wednesday 26th July 1978 - The results of the biopsies were back :
“Biopsy of mucosa from colon: Severe focal chronic inflammation with occasional multi-nucleated giant cells. This would do well for Crohn’s disease”
There is also a rather worrying phrase in my patient notes :
“Is to commence chemotherapy”. In practice it meant taking Salazopyrine, a mild immunosuppressant, not what I would describe as a chemo drug.
Thursday 27th July 1978 - Commenced treatment - Salazopyrine, 500mg/day, along with codeine phosphate and iron tablets.
Friday 28th July 1978 - the consultant noted that the biopsy had confirmed “Crohn's as well” and that I had started to feel stronger after the transfusion.
They weren’t in any hurry to discharge me from hospital so I was kept in Mayday until 3rd August. The overall conclusion was - “Severe Crohn's involving distal ileum, ileocaecal region, mid transverse colon and probably lower descending colon”. I guess they kept me in for so long to give my digestive system time to recuperate, not just to carry out the tests. I came out of there with Salazopyrine prescribed together with codeine phosphate.
At some point I had asked one of the doctors if they knew what caused Crohn’s disease. He had responded that nobody knew but he had heard some odd theories including cornflakes and stray bristles from toothbrushes. These was no cure.
Back to being an Outpatient
In September I went to my first outpatients' clinic since the discharge from hospital. After the appointment the consultant's registrar wrote to my GP. This extract sums up what they knew :
"On examination we thought he was pale and anaemic and felt the probable diagnosis was Crohn's Disease. This was confirmed by a barium follow through which showed quite a long segment of the terminal ileum was markedly diseased with narrowing and irregularity and loss of normal mucosa. There was also quite a long segment of abnormal transverse colon and possibly the lower descending colon. A rectal biopsy was performed and confirmed the diagnosis histologically. He was treated with a blood transfusion, Salazopyrine and Codeine Phosphate and appeared to make a reasonable recovery.
However, when I saw him in the clinic he was worse again and felt he had relapsed to his pre-admission state. His haemoglobin had dropped to 11.5"
As a result of this the Salazopyrine was stopped and my long relationship with prednisolone began - 10mg three times a day. The letter ends with :
"He is aware of his diagnosis and appears to understand the disease"
The steroids worked. All seemed to be going well and I was able to start reducing them towards 10mg a day. In March 1979 I completed my finals and during that period my digestive system behaved impeccably. It was once the exams were over that I noticed I was having to rush off to the bathroom more frequently. I made an appointment to see my consultant but was seen by one of his registrars. That was on the 3rd April 1979. He put me on Loperamide instead of the Codeine Phosphate and said he would see me again in a month's time. I remember taking the prescription into the chemist's and the pharmacist saying "4 weeks? You shouldn't take these for more than 2 days".
I saw the doctor again on 1st May and reported that I felt a little better. He told me to continue with the drugs I was already on and added a Predsol Suppository to be "taken" (inserted) every night. He would see me in another four weeks. At that next appointment I was able to tell him that I had improved vastly over the last 4 or 5 days. He told me to continue with the medication as prescribed.
I had started my first “real” job since leaving College working on a construction site in King’s Cross. In those days the area had not been “gentrified” and the walk between work and the Tube station was “educational”. I couldn’t work out why there was always a group of ladies waiting at the bus stop but never got on a bus. It wasn’t until a colleague came in one morning and said that he’d been offered a “quickie standup in a doorway for two quid” that the penny dropped.
I must have been feeling well enough to take the train to London everyday and then catch the Tube up to King’s Cross but don’t remember much about the first couple of months on site or whether there were any warming signs as to what would happen next.
First Trip in an Ambulance - Tuesday 19th June 1979
On 19th June I started getting terrible pains in my lower abdomen, right hand side. They became worse and worse until they were unbearable. I was still living at home at that time. By late morning the pain got to the point where my mother called an ambulance. I was rushed into Croydon General Hospital with suspected appendicitis. We sped down the main Brighton Road through Purley and down to West Croydon. I was expecting to go to Mayday again but this time it was Croydon General. My first trip in an ambulance and with the added bonus of "blues and twos".
My biggest fear had been realised. I was heading to hospital, almost definitely to go under the knife. I thought about the alternative - refuse to have an operation and discharge myself ....and die. At that point I knew I really didn’t have a choice and that I might as well accept my fate without trying to fight it - the first time I had been confronted by a live or die situation. I decided that life would be easier if I made the experience as stress free as possible. That was a turning point in my life and has governed how I have survived numerous visits to hospital, either for appointments, procedures or longer stays. Focus on a positive point in the future, beyond your current situation, then suspend normality and adjust your behaviour and attitudes to fit in with the regime you find yourself in.
|The rather gloomy exterior of Croydon General Hospital|
I was taken into the anaesthetic area. The anaesthetist introduced himself and explained what he was about to do. No doubt there was a consent form to sign. As he injected the first sedative he said "I want you to count to ten, you won't get past three!". Yeah, right - “One, two...”
That's how the operation started. The surgeons prepared to do an appendectomy and made the first incision. I had a very neat appendix scar , about three inches long, to prove it. When they looked inside, however, they found that I had a hole in my bowel that had leaked into the abdominal cavity. The appendix was left in position as they didn't want to risk septicaemia. A new, much larger incision was made just to the right hand side of my navel. They sewed up my bowel and cleaned out the cavity. 33 years later the implications of the perforated bowel would come back to haunt me.
I was returned to the ward at 9:30pm after an “exploratory laparotomy”. I had a “C” drain in place and a nasogastric tube on continuous drainage. What I didn't know until recently was whether my large or small bowel had burst and whether a section had been removed during the operation.
(I wanted to know this as the surgeon, 30 years later, asked exactly this question. I now have a copy of the discharge letter with all the gory details. I always blamed the Imodium for causing a blockage but with hindsight I think that is unlikely. My current surgeon told me that staying on Loperamide long term would not be a problem and I have been taking two capsules a day since October 2010.
Wednesday 20th June 1979 - I must have been in a fair amount of pain after the operation as I was given shots of morphine. Amazing stuff and I could understand why it was taken as a recreational drug. At one point I could see a circle of blue flames floating around the ward. I asked for some more, after all how often do you get a chance of taking Class 'A' drugs legally and for free? I never got any more after that and that wasn't the only thing withheld.
I was to be "Nil by Mouth" for most of the next three weeks, fed intravenously through a tube (catheter) that entered at the wrist, traveled up the arm inside a vein and over my shoulder down into my chest. Getting the tube into position was an experience in itself. Just seeing the apparatus would be enough to make some patients faint. Luckily I'm made of sterner stuff so the sight of a thin plastic tube, 800mm long, and knowing where it was due to go, was more a curiosity than a worry.
The installation process however did not go smoothly. The first attempt at insertion failed so the doctor tried the other arm. Still no luck. Go back to the original arm. Nope. By now I was surrounded by a small group of doctors and nurses. In all it took five attempts to get the tube into the correct position. I'm amazed I haven't been put off of cannulas and needles for life but maybe once you've had one that long inserted the others pale into insignificance.
|The daily nurses' meeting on Ward 15|
Saturday 23rd June 1979 - I was starting to turn the corner after the operation. Another bottle was added to my drip stand and an additional tube fed into the catheter. This new bottle contained an intravenous feed but looked rather like the contents of a catheter bag. The nurse noted that I had spent much of the day out of bed.
|Tethered to my drips. The rosy cheeks suggest this was post blood transfusion|
Being in hospital appears to have wound my age back ten years
A routine I quickly became used to were the twice daily hydrocortisone injections. The chosen site for these jabs was my backside. The routine was drop your pyjamas, roll on your side, jab. The day had come when the doctor, on his ward round, decided I didn’t need any more shots as I was recovering well. Hurray. No more pin cushion bum.
That afternoon the rest of the band came to visit and spent most of the time eyeing up the nurses. There was a lot of good hearted banter going on. A couple of nurses decided they would show my mates just who called the shots, literally. Half way through visiting time they came over and said “Time for your injection”. I explained what the doctor had said but they were having none of it. They asked my friends to move away from the bed so they could pull the curtains around and then proceeded to give me instructions in very loud voices. “Drop your pyjamas. No, lower. Right, roll over. Which cheek do you want it in? OK, you’ll feel a little prick....” You can imagine the effect this had. Lots of laughter and inappropriate remarks from outside the curtain.
|The lovely Nurse Hope in typical pose|
Monday 2nd July 1979 - The lead consultant was on the ward round. He decided that the IV feeding could be stopped the following day and the Vivonex upped to six times a day.
Tuesday 3rd July 1979 - For the first time since 19th June I was going to be allowed a light meal that evening. My girlfriend was visiting when dinner was served, a bowl of chicken soup. Given how long it was since I had eaten I believe any food would have looked appetising but the smell coming up from the bowl was getting my tastebuds excited. As I lifted the spoon to take the first mouthful a nurse appeared and told me not to eat any. I was only allowed a liquid diet at this stage so she would have to take the soup away and strain out the pieces of chicken. I can laugh about it now.....
Friday 6th July 1979 - I was finally allowed to resume a normal diet. An appointment was arranged for me to see Dr.Parrish at Mayday Hospital the following Tuesday. As I was getting close to discharge it was decided that I could go home for the weekend. Quite a surprise.
Being the height of summer and with no air conditioning on the Ward the windows were often left open well into the evening. That evening I could hear my name being called from outside the window, even though the Ward was on the third floor. Curiosity got the better of me. I poked my head out to see three of “my” nurses, all dressed up in their glad rags, heading off to go partying. They looked very elegant. “Just wanted to see if you’d like to join us”. The rapport built up with the nurses certainly helped me through the hospital experience. I wonder if it easier as a young, male patient given that most of the time you are interacting with young, female nurses.
Weekend Leave - They weren’t in any hurry to discharge me from hospital. They knew that, providing I continued to make good progress, I would be going home the following week. The decision that I could have “weekend leave” was very welcome. When I returned to the ward on the Monday morning the other patients said I had done well to be away. A guardsman from the local barracks had been brought in complaining of a bite in a very delicate place. He claimed that the wound had been inflicted by a dog to which the doctors had replied that, looking at the shape of the teeth marks, the dog must have been wearing dentures. The new patient had kept everyone up all Saturday night with his moaning and luckily was discharged on the Sunday.
Tuesday 10th July 1979 - Discharge day. In the afternoon I was taken to see Dr.Parrish at Mayday Hospital and then finally was home.
The photographs - I asked my girlfriend to bring my camera in so that I could take some pictures of the ward and nurses in action. We’re not talking small, compact camera but a full SLR. I did ask permission before snapping away. The nurses must have thought I was mad. I dug the photos out again to scan them for this chapter. and it brought back a lot of memories, I can still remember the names of some of the nurses. Most of them were about the same age as me and we quickly built up a close rapport. It certainly made life more bearable although they weren’t above playing the odd practical joke.
|Making the Beds|
If you compare the very basic beds shown in the photographs with the hi-tech, all electric adjustable ones of today with their overhead telephones, TV and internet access you realise just how much we've moved on. The things that have not changed are the care and humour with which the nurses have treated me and the ritual of the daily ward round.
There is a well known clip from the 1954 film "Doctor in the House" that you can find on YouTube (just search for Sir Lancelot Spratt). If you haven’t seen it before then please spend a couple of minutes watching. You will see that the ward environment in 1954 was very similar to the one I photographed in 1979. I refer to this clip in a later chapter as I won a bet with my wife that I would not ask a doctor what the "bleeding time" was. Unfortunately doctors nowadays either haven't seen this clip (which should be compulsory viewing) or have no sense of humour.
On 10th July I took a picture of, what I hoped would be, my last ever hospital meal.
|The Last Supper. Lovely doily|
When I was discharged from hospital I was still taking the prednisolone and codeine phosphate that I had first been prescribed in 1978. Prednisolone, a steroid, is first choice for reducing inflammation. Unfortunately it has a number of potential side effects including weight gain, behavioural changes and osteoporosis. The approach is to hit the inflammation with a high dose and then progressively reduce to a “safe” level as soon as possible.
Codeine phosphate is an opioid used in the treatment of Crohn’s Disease for its pain killing and anti-diarrhoeal actions. Being opium based it can become physically and psychologically addictive.
The Discharge Letter
Hospital policy nowadays is to copy the patient in on any correspondence. In 1979 it was customary just to send it to the patient’s consultant and GP. It wasn’t until 2012 that I read the description of what had been found and what the surgeon had done. I was finally able to answer a question that I had been asked many times over the following 30+ years.
The letter read as follows :
"Abdomen x-ray there were some distended loops of bowel seen mainly to the left of the spine and also within pelvis. Appearances of mucosal odema seen in a segment of transverse colon to the right of L2, and the possibility of toxic mega-colon has to be considered.
Clinically it was very difficult to exclude acute appendicitis in addition to Crohn's disease and there is a possibility that his physical signs may have been masked to some extent by the steroids. Therefore, it was decided to operate on him and a lance incision was made over the right iliac fossa. The peritoneal cavity was entered and there was turbid fluid which was sucked out. The appendix was slightly inflamed but the secum was more inflamed and the terminal ileum was idurated and oedematus. Crohn's disease was diagnosed and the lance incision was closed and a right lower paramedium incision was made in the terminal area. About 2 ft. of it was inflamed and thickened and there were two early strictures in the terminal ileum. Part of the terminal ileum was in the pelvis and adherent to the pelvic peritoneum and this was cleared and found to be coated with fibrinous exodate.
There may have been a small perforation in this area which was sealed off by fibrin now. The caecum was grossly oedematous and inflamed. There were skip lesions in the ascending colon and transverse colon. About 4 feet of small bowel proximal to the badly affected terminal ileum was also slightly inflamed and dilated. The rest of the intra-abdominal viscera appeared normal. As the appendix was only mildly inflamed as part of the Crohn's process and the caecum was grossly oedematous, it was decided not to perform an appendicectomy, especially as there is high risk of formation of a faecal fistula.
The peritoneum was washed with Noxiflex solution and the wound was closed in layers with corrugated rubber drain to the pelvis. The operation was covered with intramuscular Hydrocortisone and this was continued after the operation. He was given parenteral nutrition for the first six days post-op and then he was Vivonex orally."
The Memory Fades
I am struggling to remember the effect Crohn’s had on my everyday life. As part of the research for this journal I looked through some old 35mm film slides. Many were labelled with the date taken and these have helped juxtapose some of my “non-Crohn’s” activities with the ups and downs of my health.
For instance in May 1978 we went to see Queen at Wembley Arena and a month later were back there for The Electric Light Orchestra. I don’t recall that my declining health was ever a consideration in going or not going. A further month on and I had been admitted to Mayday Hospital for tests.
Similarly, on 17th June 1979, we had seen Manfred Mann in concert at Fairfield Halls. Just two days later I was undergoing emergency surgery in Croydon General Hospital for a perforated bowel.
My own musical career had to take a back seat.The band had temporarily stopped gigging until I had regained my health. It was around a year later that we started playing again at such choice venues as the Thomas a Beckett, in the Old Kent Road; The Castle in Tooting; the Walmer Castle in Peckham; and The Blue Anchor in South Croydon.
I have discussed with my wife the inability to remember many bad times. She then reeled of a number of occasions when I had had to rush to the bathroom or felt bad enough to consider A&E. I’m starting to wonder whether my subconscious is deliberately suppressing the bad memories as a form of defence mechanism.
Follow this link for the next Chapter - The Quiet before the Storm