Crohn's Disease - Chapter 8 - June 2012 - Back in hospital again

DIARY

Saturday 26th May 2012 - just towards the end of having dinner my body told me not to eat any more, not one mouthful. Normally it tells you that you are starting to get full and slow down but this was a definite "stop immediately". I had never experienced such clear signals before.

Sunday 27th May 2012 - had a simple breakfast but after that really didn't feel like eating anything. Managed a little stewed apple for lunch. I was pleased that I was seeing my specialist tomorrow.

Monday 28th May 2012 - Trip to 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.

I went through my list of queries starting with "what did the MRI scan in April show?" He replied that contrary to the colonoscopy that he had done just before Christmas, this test appeared to show that the inflammation had returned to both my small and large intestines. I was disappointed by this and was surprised that I was feeling no pain apart from the area around my operation scar. We discussed what the options were for medication to combat this return of the Crohn's disease and decided that I would go back onto steroids, in the form of Budesonide, once the results of a blood test were known.

We went on to discuss 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. I went off to get a date and was surprised to be offered the 6th June. As this was so soon I had to go and get the necessary "bowel prep" which involved another long wait to see the nurse

The Shard
As ever I took a picture of The Shard as it is just next to Guy's Hospital.

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.

The ward is in the new section of the hospital and was only opened three months previously. It was arranged in 4 bed bays and well set up. Each bed had its own entertainment unit giving free access to TV, Radio, Internet and local phone calls. At St.Thomas' you had to pay for these! The advantage of St.Thomas' was the spectacular views over the River Thames. Anyone up there for the Queen's Diamond Jubilee weekend would have had a grandstand view of the River Procession.

Crohn's Disease - East Surrey Hospital - Charlwood Ward
View from my bed in Charlwood Ward - East Surrey Hospital
In one of the other beds there was a patient suffering from extreme cerebral palsy who spent a lot of his waking hours making loud, involuntary grunts and screams. The way the nurses treated him was amazing, trying to make him as comfortable as possible.

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 I was bleeding 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. The cannula is a short plastic needle, about a couple of inches in length, that gets inserted into a vein to allow intravenous liquids to be dripped in. They can be inserted anywhere that a good vein can be found so are usually into the arm either at the wrist or further up, close to the elbow. My cannula had been inserted in such a position that if I bent my elbow it would cut off the flow. The units of blood are pumped into the arm by a machine that regulates the flow and detects if there are any obstructions to the flow. If there are sets off an alarm. I therefore spent most of the day forgetting to keep my arm straight and, in consequence, the alarm kept going off and the nurses had to keep resetting it.

Wednesday 30th May 2012
- didn't get a good night's sleep as the patient with cerebral palsy had a very disturbed night and the nurses had left his radio on to try and settle him. I will admit that the lack of sleep and the constant noise does lead one to some very dark thoughts and did leave me questioning the morality of sustaining life in certain situations. I think that's enough said on that subject.

To try and alleviate the boredom I started reading "Freddie Mercury - The Definitive Biography". I've always been a Queen fan and seen them in concert a number of times.


When the doctors turned up to do their ward round I asked them to ensure that I was on the endoscopy list and that whilst I accepted that yesterday I was cancelled due to circumstances beyond anyone's control I wouldn't be so laid back today. I was therefore Nil by Mouth again. The blood transfusion had brought my blood count up to 8.6, still low but improving.

One of the doctors noticed the book I was reading and said that her maternal aunt went out with Freddie Mercury when he lived in India and so we had a good discussion about that before talking about my situation.

I've learned from previous experience to make lists of any questions you want answered. I had a dozen or so items on my list and so went through them one by one. A lot of the them really depend upon the outcome of the endoscopy but she also wanted to speak to the consultant. As luck would have it he appeared and I was able to ask him what the prognosis was. Again it would really come down to what the scope showed.

Around one o'clock I was wheeled down to the endoscopy unit, which is adjacent to the ward, and into the new waiting area. When I was taken into the procedure room the doctor asked if I had had an endoscopy before. I replied "about 12 years ago" to which he responded " you'll be pleased to know that the tubes have got smaller and the drugs more powerful". He then sprayed some anaesthetic, which tasted of burnt bananas, into the back of my throat and injected some tranquilliser into my cannula. Next thing I knew I was waking up ready to be wheeled back to the ward. I couldn't feel where the tube had been put down my throat. Definitely an improvement from my previous experience.

So back onto the ward and waiting to find out what the endoscopy revealed. 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 which are 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 to have an ultrasound scan carried out to look at my liver as sometimes damage to one of the large veins could route the blood supply into the esophagus. They hoped that the scan could be done the next day.

Another disturbed night

Thursday 31st May 2012
- in the morning came the good news that the noisy patient had now had completed his treatment and was being discharged that day. I know it sounds terrible but it was a great relief as the constant noise was really stressing me out, the other patients and probably the nurses. It was not conducive to everyone else's recovery.

Not wanting to miss another day I made sure that the nurses knew I was expecting to go for the ultrasound scan today, not tomorrow. It worked and they gave me my lunch early as I was on the list for the scan at 18:30.

As usual the nurses are fantastic. It wouldn't be fair to name them but one came in to see us early afternoon to check our ward was OK and she looked upset. She said that it had been a hard day and that one of the patients had suffered a heart attack from which they didn't recover. She'd said even after all the years of nursing she went outside and had a cry.

I've also been reacquainted with the Specialist IBD Nurse who had now relinquished that role, to return to being a nursing sister, in an attempt to have some private life as the number of IBD patients had become difficult to manage. It was nice to be greeted by a friendly face and a kindred spirit. That became apparent when one of the other nurses mentioned Eastenders and we both said in unison that we never watch that shite and then proceeded to discuss the bad effect that the constant aggression based storylines had on its audience and society as a whole.

At 6:20 the porter turned up to wheel me down to ultrasound. I was happy to walk but he had a chair so I got onboard and off we went with him singing away and saying hello to every woman we passed, all of whom he seemed to know personally. We even passed a pregnant woman to which he commented "it's a girl, love". When we got down to the ultrasound area there were two women waiting. He pushed me into a position so I was facing both of them and said "I'm sure you're man enough to handle two women" and left me there. At least it broke the ice.

After a few minutes wait I was laying on the scanning table covered in KY jelly with the scanning head being run all over me. The scan was expected to show some damage to my kidney but it didn't appear to. What it did show up was an enlarged spleen and a gall stone. It was time to go back to the ward and five minutes before visiting time started. I hung around for a few minutes and then the nurse took pity on me and said I could walk back to my ward with my notes.

That worked well as I got some much needed exercise and was back in my bed for when my wife turned up. It wasn't the last I saw of the porter. When visiting time came to an end I walked down to the entrance with my wife to find my sister and young nephew waiting. My nephew was only eleven and petrified of hospitals. My sister was keen that he should at least set foot inside the entrance. Just then I caught sight of the porter and he came over. He asked me if I been able to "handle" the two women. Good thing I had already told my wife about this! I explained that my nephew didn't like hospitals. He put his hand on my nephew's shoulder and said "you don't want to worry about hospitals, son. Especially dead people! Anyone might go to sleep tonight and not wake up............."

We all looked at each other in amazement and couldn't believe what we were hearing. Luckily my nephew took it in his stride and the porter waved goodbye. I'm pleased to say that it actually had a positive effect, believe it or not, and my nephew said that he was now prepared to come all the way down to the ward.

Friday 1st June 2012
- there was a much reduced number of doctors on the ward round. I asked what the outcome of the ultrasound test was and it sounds like nothing particularly untoward showed up apart from a gall stone and a slightly enlarged spleen. I would ask again just to make sure I got that right.

With the Bank Holiday weekend coming up everything would go into limbo. At weekends there is a team of doctors that covers the wards but only see patients that are causing concern. Staving off the boredom was going to be difficult. I've asked if I could spend Sunday at home to watch the Jubilee River Procession and been told there shouldn't be any reason not to.

Sometime ago I joined the UK Crohn's Forum and one of the moderators suggested we had a coffee some time to "moan about Crohn's". We had met up in Redhill the Friday before last for a coffee and got on very well. When I got brought into hospital this time I posted on the Forum that things hadn't gone to plan and that I had ended up in East Surrey Hospital. He contacted me to say he would come and visit me and it made a nice break from the boredom.

Mid-afternoon he arrived bearing gifts - chocolates, a newspaper and a copy of Private Eye. Much appreciated and we had a good, wide ranging discussion. I think he was impressed by the ward and the staff. It's nice to make new acquaintances even if the circumstances under which they are made are less than ideal.

After my afternoon visitor had gone I received a visit from one of the doctors. I told him that I was planning to spend Sunday at home. He was concerned that my blood count had not increased and that the decision would be made tomorrow when the next set of blood test results were available. I pointed out to him that tomorrow there would only be a skeleton staff of doctors on duty and asked if they have time to check my blood test results. He wasn't sure.

When my wife turned up in the evening I had to tell her that my planned trip home on Sunday was in jeopardy.

Saturday 2nd June
- had my blood sample taken as usual but never saw a doctor. I said to the sister that there was some doubt as to whether I could spend Sunday at home. She replied that there was no reason to prevent me and that some doctors always dithered. So my day of freedom was back on.

In the afternoon my oldest friend, and best man, came in to see me and we spent a good couple of hours putting the world to rights and reminiscing about the time we spent, when still at school, working in the local mental hospital in order to raise money to buy a PA system and drum kit for our fledgling group. The hospital stands a few hundred metres from where I am currently lying. The patients are long gone as the buildings have been converted into posh flats and apartments.

Working there clearly had a lasting impression on us as we could still remember some of the patients 40 years on. We worked in the kitchens and our first task each day was to sweep up the half dead, poisoned cockroaches!

He brought in some books for me to read. I chose "Dark Matter" and "Salmon Fishing in the Yemen". Will see how far I get with them.

Spent a quiet evening watching my guilty pleasure "The Voice".

Sunday 3rd June 2012 - had planned for my sister to pick me up at 10 o'clock but then I realised that I would have to get my blood samples taken before I could leave and being a Sunday they might be later doing the rounds than usual. I rang my sister to tell her to wait for my call before setting off. Luckily the phlebotomist (vampire) turned up quite quickly and I was soon able to be on my way home.

When we turned into our driveway I got a shock. The grass and the weeds have gone mad with the recent sun and rain. I need to put this to the back of my mind as I don't want to be lying in a hospital bed worrying about something I can do absolutely nothing about.

Spent the afternoon watching the Jubilee River Pageant which I had originally thought we might go up to. I know that the weather didn't help but I found the whole event rather underwhelming and far too drawn out. I wasn't impressed with the BBC's coverage and it sounded like I' was not alone.

It was nice to spend a few hours at home with my wife. Our dog seemed pleased to see me, partly because I didn't play my guitar. I even got to do the fill the haynets and do the dinners for our ponies.

I returned to the hospital just as they were serving up dinner - pasty surrounded by a large pool of baked beans. Crohn's patients are supposed to avoid high fibre foods but it looked very appetising and the ward is well ventilated so I thought what the hell and enjoyed every mouthful. The rest of the evening was spent watching another guilty pleasure - the Apprentice Final.

Monday 4th June 2012
- more limbo because of the Bank Holiday. The only doctors on duty are seeing patients by exception i.e. the ones having problems. I could have spent another day at home but realised too late.

The phlebotomists did their usual rounds and I later found out that my blood count had dropped to 8.0 from 8.6. Not good and will prolong my stay in hospital. The sister said that the doctors would be doing a proper ward round tomorrow so time to get a list of questions together for the morning.

My sister, her husband and my nephew came to visit in the afternoon. Amazingly he had not been put off by his recent encounter with the porter and had made it all the way down to the ward. When it was time for them to leave I walked down to the entrance but on the way back did feel wobbly so clearly I'm not ready for discharge yet.

Political Incorrectness Alert - One abiding observation from watching the visitors leaving at the end of visiting time is that the majority of them are obese and a large number grossly obese. I'm proposing that the a grading system should be introduced to describe the various levels of grossness - porkers, plumpers (fairly self-explanatory) but then moving on to DTS (Danger to Shipping - my wife thought that one up) and the ultimate VOGE (Visible on Google Earth).

My evening was spent watching the Jubilee Concert. We had applied for tickets and would have been gutted if we'd actually managed to get them and then not been able to use them.

Please, please, please can everyone agree that certain performers should never be seen singing again. They are simply too old to be able to keep in tune and the songs they sang as young men just sound wrong. Treat this as their swansong. I include in this list Cliff Richard, Elton John and Paul McCartney. To add insult to injury Will.I.am turned up. Were the BBC using this as an extended promo for "The Voice"?. How he had the nerve to even be on the same stage as Stevie Wonder (my personal highlight) I do not know. Maybe the occasion was getting to the performers but the usually excellent Annie Lennox was woefully off key and even the lovely Kylie was underwhelming.

Tuesday 5th June 2012
- didn't get a particularly good night's sleep as the patient next to me had his overbed light on all night. I couldn't be bothered to get it switched off. I knew that whatever sleep I needed I would be able to catch up on during the day.

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 the previous chapter.

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'm now in the position that I'm under the care of East Surrey for my emergency admission but the long term treatment of Crohn's is 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 is all a little scary. Ultimately, if PSC is diagnosed, the long term prognosis is a liver transplant! The only way of getting a definite diagnosis is to carry out a biopsy on the liver by passing a long needle between two ribs. Wikipedia notes that PSC is common amongst Colitis suffers (85%).

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 will revisit 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).

One of the young doctors said he would put in a cannula so that he could take the blood sample and then use it to do the transfusion with. I asked him, in all seriousness, if he was an expert with cannulas. He replied that they were one of his routine tasks. My previous experience has always been if you want it done properly ask a nurse. Unfortunately I wasn't wrong. He took three attempts to get a needle into my right arm. The third attempt resulted in a working cannula but it was in a very small vein and close to my hand. Very inconvenient when eating etc.

Later in the afternoon the first unit of blood was ready for infusion. The nurse connected up the pump and switched on. It hurt. She decided that I would be better off having a new cannula put into my left arm. Without any fuss or second attempt she inserted the new cannula in just the right position, reconnected the blood and removed the old.

In the evening my wife came to visit. I had already rung her in the morning and told her the potential diagnosis so she had a number of questions. When the IBD nurse came into the ward we called her over and my wife was able to ask some of the questions she had thought of during the day. It's great that she had this opportunity as I didn't have many of the answers.

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 this. I had told everyone I was in until at least the weekend or possibly would be transferred to St.Thomas'. I've now got 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.

I rang my wife and then my sister to arrange for being picked up in case my blood test was OK. I then decided to contact St.Thomas' to make sure they were aware of what was going on and to ask if I should start taking the Budesonide that I was due to start. I emailed my consultant's secretary and got back a quick reply telling me that the dialogue between the two hospitals had started and to hold off on the Budesonide.

I didn't want to tempt fate so held off changing into my going home clothes. Just after lunch I got the good news, I was going home. I just needed Pharmacy to sort out my medications and for the doctors to write my discharge letter. I thought that can only take a short while. If I had known yesterday that release was imminent I would have found the pharmacist and ensured that sufficient quantities of drugs, with the right labels on, were ready for me.

Anyway, I hadn't managed to do that but I thought "it can't take long to issue them". How wrong I was. The Pharmacy must employ the slowest of the slow. I imagine the criteria for getting a job in there is turning up late for the interview.

I kept making trips out to the ward reception desk to see if the drugs had turned up. By 4 o'clock my frustration was getting the better of me and then I caught sight of the pharmacist. "Great she's got my drugs". No. She's just started going through them. When I told her that I was waiting to go home and it all revolved around her she said that it wouldn't be much longer, probably another 90 minutes because a porter had to go down to Pharmacy to collect them! I retired back to my ward before I strangled someone. When I asked the sister if anything could be done to speed up the process she said, basically, no and that she had been avoiding me as I had started huffing and puffing. Wise move!

By 5 o'clock I decided I would wait by the reception desk until the drugs appeared. Another half hour went by and one of the other sisters took pity on me and personally walked down to the Pharmacy. A few minutes later she came back with my drugs. I thanked her profusely and then all that was left was the discharge letter. That took another 5 minutes and I was done.

I finally got away at around six o'clock. It took getting on for 5 hours to get the drugs out of the Pharmacy. If I had known it would take this long I would have gone home and come back later. I don't do "wound up" but I made an exception in this case.

I did however achieve something that would make my wife proud. You really need to watch the clip from the 1954 film "Doctor in the House" to understand but it's been a long standing challenge, during my stays in hospital, to ask one of the doctors what the Bleeding Time is.

So, whilst I was waiting for my tablets, propped up against the ward reception desk, I saw my opportunity. One of the doctors I had been treated by appeared and I asked her a few questions then slipped in the "what's the Bleeding Time" question. She said it depended on your platelet count to which I replied that the clock behind her said twenty past two.

A sense of humour doesn't seem to be one of the requisites of being a modern doctor. My witty comment went completely unnoticed but at least I tried and I'm treating it as a brave first attempt.

This clip shows the original :

One thing that surprised me in this clip is the reference to keyhole surgery. I thought this was a very modern innovation but clearly it had been tried in 1954 (before I was born) even if it was frowned upon by "proper surgeons".

Thursday 7th June 2012
- my first good night's sleep for 10 days. Time to take stock. The discharge letter makes interesting reading but takes a fair amount of translation.The bulk of it lists what they didn't find so I'm rather confused as to what I have actually got wrong with me. The only definite observations were an enlarged spleen and a gallstone.

I've read through the leaflets that came with the drugs. They've given me two new ones - 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.

The hospital advised me to make an appointment with my GP to run through with him what has just happened to me. I'll see him this time next week for that discussion.

When the post arrived there was a letter from St.Thomas' asking me to ring the Endoscopy Dept. to make an appointment. When I spoke to them they said that this was to rebook the colonoscopy that I had had to cancel on 6th June. I explained that I needed this examination quite urgently as the consultant needed to see if my Crohn's had flared up again and they were able to give me a slot on 20th June. I've already picked up the preparation drinks so I've no need to go up to London for them.

I spent the rest of the day dozing as things were starting to catch up with me. I'll hold off adding to my blog unless anything untoward happens to me before 20th June.

Thursday 14th June 2012 - went to see my GP to discuss my recent admission to East Surrey Hospital. I took with me a copy of my discharge letter (the one that says "Copy sent electronically to GP") as I thought he may not have seen it. I was right. We talked about the way forward and I asked him about having B12 injections. He knew how to get access to my blood test results from the hospital and agreed that my B12 level was on the low side. He asked me to make an appointment to get an injection. On the way out of the surgery I managed to book an appointment with the nurse for the next day.

Friday 15th June 2012 - arrived at my appointment with the nurse for my B12 injection. She informed me that my doctor had not added the injection to my notes and that he wasn't in that day. Luckily she managed to find one of the doctors, who looked at my blood test results, and gave the go ahead, not just for one injection but for a "loading dose" consisting of six injections at two day intervals.

Now I'm not fussed about needles but the nurse warned me that some people find them uncomfortable. They are put into the muscle in your upper arm and the needle is quite long. I have to admit it did sting a bit. I'm not looking forward to another five!

I then had to arrange for these other 5 injections. I was intending to return to work the following week so fitting them all in was not easy.

Tuesday 19th June 2012
- Pre-endoscopy preparation day. No eating after a light breakfast. At noon I drink 50ml of senna pod liquid. This was followed an hour later by a sachet of sodium picosulphate dissolved in 150ml of water and then again at 5:00pm. The camera has to have a clear view of the gut wall so you can guess the effect of these drinks. Once you've started drinking these liquids you don't stray far from the house.

Wednesday 20th June 2012
- the day of the colonoscopy. Having not eaten anything since yesterday morning at 8:00am the hunger got really bad. I was allowed to drink water up to 3 hours before the procedure.
The Shard with Guy's in the foreground
Got up to Guy's Hospital nice and early for the 1:30pm start time. I was accompanied by my wife as they will not carry out the test unless you have someone to see you home safely.

By 1:40pm I was changed into a surgical gown ready to go. My blood pressure was then checked and I was asked questions on allergies etc. I was taken to a waiting area and was there about 30 minutes when I moved on to a corner of the recovery room where I had a canula inserted into the back of my hand and then I waited some more. At 2:30pm I was told that an in-patient was going in in front of me but only for a 5 or 10 minute procedure.

Finally at 3:00pm the doctor came and sat down to talk through what he was about to do and get me to sign the consent letter, then we were off to the procedure room. I asked to have minimum sedation as I like 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 told him that the MRI scan at the end of April suggested that the Crohn's had flared up again in both my large and small bowels and that 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 explained that I wanted to be conscious so I could watch the monitor and was only given a mild sedative. I was told to lay on my left hand side, with my knees drawn up, and the camera was stuck where the sun don't shine.

It all started OK. There was no sign of any inflammation. A real surprise. The camera continued on its way but then reached 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 then got the nurse to push hard against my abdomen to try and ensure everything was lying flat. He tried getting me to lie on my back. Nothing worked. There's never been a problem in the past so I don't know what went wrong this time. The "camera experience" lasted about 50 minutes. The amazing thing is that, so far, I haven't been able to feel any after effects.

I was hoping that the lead consultant was the one carrying out the test as it would give me the opportunity to discuss the way forward with both the Crohn's and the new problem, bit I didn't see him.

It looks like I will need to have the colonoscopy repeated by with another, smaller camera. There is a test that can be done on a "sample", called a calprotectin test , which gives a good indication as to whether Crohn's is active or not. Maybe they will opt for this rather than another camera job. The other alternative is a capsule endoscopy where you swallow a small capsule camera that transmits pictures of your digestive system as it passes through. The pictures are picked up, wirelessly, on a receiver worn around your waist.

Thursday 21st June 2012 - a letter arrived from Guy's with the date for my appointment for the MRI scan on my liver, 5th July. My consultant had asked me to let him know when it was so I emailled it to his secretary. I also asked whether I should have the calprotectin test done and if so where I should take the sample. Had another B12 injection.

Friday 22nd June 2012
- another trip to the doctor's surgery, this time for a blood test. Will get the results on Monday.

Monday 25th June 2012
- back to work after 4 weeks off. I got a very warm welcome. Mid morning I made my way over to St.Thomas' to drop my calprotectin sample off at the Central Testing Laboratory. Really was a beautiful morning. Couldn't resist taking a picture from Westminster Bridge.

It would be two weeks until the calprotectin results were available. Looks like a good point at which to start a new chapter

View from Westminster Bridge looking upstream