Crohn's Disease - Chapter 7 - June 2011 - Reversal and Recovery

DIARY

Sunday 12th June 2011 - Late afternoon my wife and I went up to London and I booked into the room reserved at the Simon Patient Hotel. It was situated in the block adjacent to the main St.Thomas' Hospital building and provided basic rooms for patients who were traveling from further afield and needed to make an early start in the morning. It was very gloomy outside, raining hard and the view could have be better. Come to think of it, it was pretty gloomy inside as well.
A gloomy night in London. View from the Simon Patient Hotel
I enquired about dinner and was told it would be served at 6:00pm. My brother-in-law and nephew, who had been to an event in London, turned up to accompany my wife home. We said our goodbyes and I settled down to wait for my meal. It was the usual hospital food (for St.Thomas’) adequate but nothing special. I had strict instructions not to eat after 2:00 am.

I went to my room and put some credit on the bedside TV, spending the rest of the evening watching Jensen Button beat Vettel on the last bend of the Canadian Grand Prix. A very good end to the evening and so to sleep. Surprisingly I did manage to sleep. I was just very laid back about the whole thing.

Monday 13th June 2011 - one of the staff gave me an alarm call at 5:30 am and brought me two special pre-op, carbo-hydrate loading drinks. I had a shower, drank the drinks and then made my way over to the Surgical Admission Lounge for 7:00 o'clock in the main hospital building. I joined a small queue and at exactly seven o'clock we were let into the room. We were asked to take a seat and fill in a questionnaire. I was told I was second in the queue so was likely to be operated on at 9:00am.

A few minutes later I was taken to a sideroom where I had to answer further questions ready for the operation and was asked to change into hospital gowns. One of the house doctors then came in to get the all important consent form signed. She told me what they were proposing to do but also explained possible alternative outcomes like waking up with the stoma intact if they found something untoward once they had opened me up. I duly signed. Back to waiting.

The next visitor was the research student who is looking into possible treatments for the dreaded Crohn's Disease. He had rung me last week to ask if he could have any tissue samples that were left over from the operation so that he could compare them with healthy subjects. He also wanted a small quantity of blood. I signed his consent form as well.

At 9:00am my clothes and any possessions were put in a locked trolley and I was taken to a seat just outside the anaesthetic room. It looked like the operation would go ahead on time.

Luckily there was a magazine to read where I was waiting as the previous operation took a lot longer than they planned. Unfortunately no one told me and it wasn't until 11:30 that I was walked to the anaesthetic room and laid down on the trolley.

The surgeon then arrived and said hello. He asked me what Crohn’s medication I had been on leading up to the operation and what was prescribed for the post operative phase. When I told him that I had been unable to see anyone at East Surrey Hospital since February he was surprised, possibly annoyed, and said he would sort something out.

After answering a few more questions the cocktail of drugs was prepared and the main anaesthetist came in for a quick word to explain that he had ordered a supply of platelets for me. He was the one who had already emailed me the previous Friday to assure me that my low platelet count would not stop the operation this time.

At midday he said "I'm just going to give you something to relax you" and I knew that next thing I would see would be the Recovery Room.

I know this may sound weird but I had really been looking forward to the operation, not simply because I would be losing the stoma, but for that moment of incredible serenity at the point where the sedation starts to take effect. You know the next time you wake up it will all be over. All your worries and fears are temporarily suspended and you are completely in the hands of the surgical team for however long it takes. There is no more that you can do at this point. Nothing that you can consciously influence. Just trust in fate and drift off.

The operation must have lasted about an hour so I was soon waking up in Recovery without the stoma but the platelets had not arrived. I guess it must have been around two thirty in the afternoon. I was given a drink straight away (which still amazes me so soon after the op). One slight snag - my pool of platelets hadn’t made it to Recovery. Some platelets had arrived but they were for another patient. Each time a nurse or porter appeared carrying a box I would tentatively ask them if they were “my” platelets.

They finally turned up around 17:00 and with an hour long infusion it was 18:00 before I was taken up to Page Ward, into the bay by the Nurse's station so they could keep an eye on me. This was the ward I should have been on for the main operation in October 2010 so I had finally made it some seven months later.

Unfortunately by the time I got to the Ward meal time had just finished so I was offered a salad and yogurts from the fridge. Again I couldn't believe I was eating less than six hours after the operation.

Tuesday 14th June 2011 - I woke up with a bit of pain from my scar but nothing too bad. No epidural this time but pain relief was always made available, mostly in the form of paracetamol but with liquid morphine as a back up.

My main disappointment was not having a "window seat". Apart from the excellence of the care at St.Thomas' there is the added advantage of the view from the eleventh floor. I think it is clear, if you’ve read my blog, that I love London, its architecture, ambience, buzz, and the view from the ward was superb. I spent ages trying to identify the various buildings that I could see off in the distance. It helped pass the time.

Halfway through the afternoon one of the nurses told me that they needed my bedspace and that as I was doing so well I would be moved to another bay within the ward. I didn't need to be kept under observation as frequently.

I went and had a shower which always makes me feel better and I was then in pyjamas rather than a medical gown. Couldn't believe it was only 24 hours since the operation.

I was duly moved to another side-ward but still no window seat. Then I heard them say to the patient who was in the window position that he could go home that night. I saw my chance and asked to be moved once he had gone. This may seem a bit petty but I remember from my previous stay that during the long nights, when it was difficult to get to sleep because of terrible nausea, having something to look at helped a great deal.


View from my bed in Page Ward - 11th Floor
I was still eating well but at dinner time I noticed that my appetite was starting to wane. Could this be the beginning of the nausea experience again?

Wednesday 15th June 2011
- stomach and abdomen expanding. It looked like it was becoming the same problem as after my last operation. Your digestive system can go into lockdown. This affects about 25% of patients going though intestinal surgery. Your guts don't like being handled and seem to stop working as a protest.

At the request of my surgeon, one of the specialist IBD consultants came up to see me to discuss what medication I should be on. I went through the apparent problems that I had be having with Azathioprine and low platelet count and the fact that I hadn't been on any Crohn's medication since February. He said he would go away and have a think about what tablets would be best and would talk to Haematology. An hour or so later the pharmacist came to see me and told me I was being put on a three month course of Metronidazole. This is a powerful anti-biotic which they have found helps with the recovery process and helps to keep the Crohn’s at bay.

(As an aside - you can always tell the pharmacists at St.Thomas' as they are usually female and because they don't have uniforms can wear really stylish clothes. I don't know if they have a competition to see who looks the most stunning each day but it’s yet another distraction for a bored, male patient).

Mid-morning one of the haematologists came to discuss my low platelet count. We must have spent ten minutes talking through the problem and in that time I learnt a lot that no one else had ever told me. For instance platelet count can be linked to malabsorption of vitamins which are usually absorbed at the end of the small intestine, exactly where a section was removed last October and the stoma created. Platelets are also affected by haemoglobin levels so my low red cell count is also an influencing factor. He said he would do a series of blood tests over the next few days and report back. He wanted to know if I had ever had a blood transfusion outside of the UK and asked my permission to carry out an AIDS test.

It was really good to see the way St.Thomas' worked in such a joined-up manner. The surgeon spoke to the IBD Dept and they, in turn, spoke to the Haematology Dept and doctors from both Dept's had seen me and decided what action to take. OK I know things work better when you are an in-patient but it's still quite refreshing of how well it can work. This was brought home to me by what happened next.

During the afternoon I received a text message from East Surrey Hospital to remind me that I had an outpatient's IBD appointment next Monday. This made me see red as I had asked this to be cancelled some weeks ago, knowing that I would be in St.Thomas' on that date. I rang the hospital appointments number and explained I wouldn't be able to attend. I then sent the following email to the ESH IBD Dept -

"I've just received a text from ESH appointments telling me that I have one next Monday at 3:50pm. I thought this had been cancelled long ago and that they were going to try and find me a slot before my admission to St.Thomas' last Monday.

Just before I went into theatre on Monday afternoon, for my reversal, the surgeon asked me what treatment I was on currently for Crohn's and what was proposed post-op. He was somewhat surprised that I have had nothing prescribed and that I hadn't seen anyone at ESH since February. He has now put me in touch with both the IBD consultant and haematologist up here at St.Thomas' and I have already met with both of them and have already been prescribed with post operative drugs. In future I intend to get any treatment for Crohn's from St.Thomas' so if there are any other appointments planned at ESH then please cancel them."

You won't be surprised to hear that I have never received any acknowledgement. At one point I had been asked if I would like to join their Patient’s Panel. I wondered if that invitation was still open, probably not.

(Post-chapter note: at the end of May 2012 I had reason to encounter my old consultant again - see the chapter entitled "June 2012 - Bollocks! Back in hospital again")

Thursday 16th June 2011 - unable to face any food or drink. I was hoping it would be just a matter of time until my appetite kicked back in but my blood pressure was dropping so I needed to take on fluids and ended up with a cannula in my left arm with a tube connecting me to a large bag of saline solution.

Spent the rest of the day quietly but still no appetite.

That night I started to suffer from heartburn. The nurse gave me some medicine to counteract it. It was a horrible, pink, aniseed flavoured paste. I didn't realise it could be diluted so attempted to swallow it straight. My body had different ideas. Quick, where's the bowl. At least I felt better afterwards.

Friday 17th June 2011 - no improvement. When the phlebotomist came round for the daily blood test she produced 7 phials which she duly filled. Haematology really meant business.

The doctor decided I needed to have an x-ray. As an in-patient you get seen straight away. No hanging around and because they couldn't find a porter the doctor actually pushed me down there and back, in a wheelchair, herself. Very impressive.

When she saw the results she decided I needed to be NG (naso-gastric) tubed. I could guess what that involved. A nurse duly appeared with a length of thin plastic tube, a small collection bag and some adhesive tape. She proceeded to thread the tube up my left nostril. So far so good. Then the tube reached the high point and started to descend down my throat and into my stomach. Not quite so good now! She then attached the delightfully named "bile bag" to the end of the tube and then started syringing to see what liquid could be drawn off. This was probably my lowest point.

It’s very difficult to get any sleep with the tube running down the back of your throat but on the positive side the pressure on my stomach was relieved and the nausea lifted. I remember being told, back in October 2010, that tubes down the throat were a thing of the past. The Enhanced Recovery Nurse had actually said “if I see a tube up someone’s nose I want to know why”. In this case I suppose needs must.

Saturday 18th June 2011 - on the ward round the doctor asked for another x-ray to be taken. Because it was now the weekend the main x-ray department was closed so I had to go to Accident and Emergency's facility. I offered to walk down but a porter was called and I was wheeled down. Again as an in-patient you are not kept waiting for very long. It didn't seem worth waiting for a porter to be called so I ended up walking back up to the ward and I was quite happy to get the exercise.

After my October operation it was on the Saturday night that my digestive system kicked back into action. Fingers crossed that it would follow the same pattern.

I had a visit from my wife and sister. My sister took one look at the tube and dubbed me "Elephant Man". Everyone, including the nurses, found this very funny. Meanwhile I was having a humour bypass. One of the hospital volunteers then appeared to see if anyone wanted to go down to St.Thomas’ cinema that evening to watch a film about....elephants. More laughter at my expense.

After my visitors had gone I wandered into the Day Room and watched the end of the Annual Thames Barge Race. We have subsequently discovered that one of my not too distant relatives was a Thames Waterman and was in the winning team in the early 1900’s.


The end of the Thames Barge Race
Sunday 19th June 2011 - didn't get a very good night's sleep because of the tube up my nose but I was getting more used to it. However my digestive system was still not up and running.

Being the weekend it meant that the doctors were fairly stretched and the nurses had not yet been able to get anyone to review my last x-ray to see if the tube could be removed. I was then told that there are no specialist IBD doctors on duty until tomorrow so the tube would have to stay another night.

At least I hadn't felt the need for any more pain killers so my operation must be healing.

Monday 20th June 2011 - one week on from operation day. I couldn't wait until the doctors did their ward round so I could have the tube removed. I held off having a shower so as not to miss them. When they eventually turned up, the lead doctor said she needed to check my latest x-ray before she could give the go ahead for removal. So I spent a very frustrating morning catching glimpses of her and then finally she came and said "OK, remove it". I tracked down the nurse who had done the insertion and told her that as she was the one that inflicted the pain so she could be the one to take it away. Bliss. I could swallow again properly and should be able to get a good night's sleep.

I was now in a much happier frame of mind and was discussing with two of the other patients how good the view was. I was disappointed that I had never been given a bed which faced the Houses of Parliament. It must have been fate as within ten minutes the nurse said that they wanted my current bedspace and would I mind moving around to the other side of the ward. So my bed was duly wheeled to its new location.  Not only did it face Parliament but it was a private room. Double result! I would definitely get a good night's sleep. My appetite had still not returned properly but my digestive system was in overdrive.

View from my "private room"
Tuesday 21st June 2011 - I was right. I did get a good night's sleep in the peace of the single room. The sister was now talking about "when you go home" so it looks liked it could be imminent, possibly tomorrow. I’d better practice wearing outside clothes again and make sure I was OK walking in the big, wide world. I set myself the target of walking out onto Westminster Bridge. It was quite miserable and bloody cold but I took a picture to prove I made it.

I made it to the middle of Westminster Bridge
I had a visit from one of the haematologists who said that there were no underlying problems showing up in the blood samples they had taken. So good news. There was always a worry at the back of my mind, not helped by looking at the internet, that there could be some blood disorder lurking.

The ward doctor, however, was not happy with my blood count so they decided I needed an iron infusion. It took a while for Pharmacy to get it prepared and late afternoon I was connected up to the drip with yet another cannula. The infusion took under an hour but I can't say I ended up feeling any different.

I rang our friend who was going to give me a lift home after work whenever my discharge took place. He reckoned it would take at least 2 hours to get home during the rush hour. Given the fragile nature of my digestive system I was not sure that would be a good idea so decided to look into using public transport instead.

Wednesday 22nd June 2011 - the doctors swept in to the room and decided I could go home tomorrow providing today's blood test results were OK. I had worked out the quickest way to get home would be a taxi to Victoria, the fast train to Redhill and then a lift from my sister to home. That was the plan.

Having learned from my previous operation experience, I made sure that everything was in place for my discharge - correct medicines in the bedside locker, the discharge letter from surgeon to my GP and the letter to the practice nurse asking her to keep an eye on my wound.

Thursday 23rd June 2011 - Going home day. Target time 14:00 hours. It was now 10 days since the operation so I could have my stitches removed. The doctor came round and said "you're OK to go, providing the blood test is OK". To which I replied "are you really going to keep me here on that basis?". She conceded that they wouldn't, so the final hurdle was cleared. I still couldn't face any food but was hoping that when I got home and could eat what I wanted, when I wanted, it would help.

Rang my wife to say "we're on".

She arrived just after 2 o'clock. We said our goodbyes to the nurses and went off to find a taxi. Within a minute we were riding in a rather old taxi on the way to Victoria Station. At first I couldn’t work out the route he was taking but the driver knew his stuff and it only took 5 minutes or so. We got to Victoria in time for the earlier, fast train to Redhill and then a lift from my sister to home.

Another stay in St.Thomas' was over. Hopefully I wouldn't need to go back there as an in-patient. I really can't praise the surgeons, doctors, nurses and ward assistants enough. Everyone was courteous, professional and cheerful. No wonder the hospital is rated by it’s patients as "Excellent". I would recommend it to anyone.

Friday 24th June 2011 - it was great to be back in familiar surroundings and to be so much more mobile than after my last operation. I took a walk round the field and was surprised to see how much everything had grown up. I always have to stop and look in the wildlife pond. There's always something of interest going on.

Wildlife pond
July 2011 - Two weeks later I felt well enough to start driving and then another 2 weeks did my first long drive (100 miles) down to the New Forest. It was a bit tiring but we stayed down with my wife's parents and it gave us a break for a couple of days. We got to visit one of my favourite places, Keyhaven, just opposite the Isle of Wight.

View from the quay at Keyhaven
Tuesday 9th August 2011 - ...and then another couple of weeks I was ready to return to work just on the edge of Belgravia in London. It's a fantastic area if you want to see how the other half live (or more likely the other 1%). As I mentioned previously there was a six bedroom flat was on the market, just down the road, for £ 39.25 million! On a sunny day a walk around the streets was a great way to spend the lunch hour. The white of the very grand buildings contrasts against the blue sky and the beautiful London Plane trees.

Sunny day in Belgravia
Wednesday 24th August 2011 - Haematology appointment at Guy's Hospital. The blood test carried out on the day showed the usual low iron and low platelet count. I mentioned that I had been on steroids for many years and was concerned that I would be a prime candidate for osteoporosis. I had had a bone scan done many years ago and it showed thinning of the bone around my hip joints. I was booked in for another scan on 14th September. Luckily the scan showed that the bone density results were normal.

Any trip to Guy's is a chance to see how The Shard is progressing. The walkway from London Bridge station into the hospital takes you right under the foot of the building.



The Shard at London Bridge
Monday 26th September 2011 - "3 months after surgery" appointment with my surgeon to make sure everything was going OK. I can't recall what we discussed but in the follow up letter the surgeon noted that "he has had one or two episodes of abdominal pain which have been short lived and some bloating…". He went on to say that "these may be the signs of early adhesive symptoms". He discharged me from the care of the Colorectal Clinic and passed me back to the Gastroenterology Dept. I really don't remember much about this appointment.

Just before Christmas I would be due for the "6 months after surgery" colonoscopy. It would be a good chance to see if anything untoward was going on inside but in October I felt decidedly rough with a pain around my middle, a very bloated stomach and was passing jet black liquid from where the sun don't shine. This lasted about a week and I was concerned enough to go and see my GP who did a quick examination and announced the good news was my prostate was OK but she didn't know what had caused the pain, bloating or black liquid. She suggested it could be iron tablets which would have been plausible if I hadn't stopped taking them weeks before. When I returned to work I found that a number of my colleagues had been off with a gastric bug during that period but as usual, with Crohn's, you don't know whether it's something you've picked up or are having a flare up.

Wednesday 14th December 2011 - One of those cold, clear winter days with hardly a cloud in the sky. My wife accompanied me up to Guy's for the "6 months since your operation" colonoscopy to check everything was healing up OK. I had the injections to make me drowsy but luckily they had little effect so I could watch the whole procedure and ask questions. There was no sign of Crohn's and just a slight reddening around the reversal join (anastomosis) so it was good news for Christmas and I was given the pictures to prove it. My consultant gave me a Rutgeert's Score of i0 . No, I didn't know what that meant either! It's a way of assessing the severity of Crohn's following an endoscopy and the likelihood of recurrence - Wikipedia explains it all.

Endoscopy printout
Meanwhile The Shard is progressing nicely....

The Shard from London Bridge platforms
February 2012 -  I had a second bout of the pain around the middle and the dreaded black liquid. I also started to get some more aching in the area of the join. I emailed my consultant's secretary and asked for my next appointment to be brought forward as I was concerned about my current symptoms. She duly obliged and a new date was set.

Monday 19th March 2012 - Gastroenterology appointment at Guys Hospital - another sunny, early spring day. Excellent for taking pictures. I went into work first then caught the Tube down to Monument station and walked across London Bridge.

View from Monument Station
When I saw my specialist my first question was are the symptoms I've been suffering from to be expected after a reversal? He said it was quite possible for a "bug" to cause odd symptoms but to be on the safe side he booked me in for an MRI scan.

Monday 30th April 2012
- MRI Scan.Yet  another glorious day so I decided to set off from work early and walk down to St.Thomas'. My route took me out through Victoria to The Houses of Parliament. Always an impressive sight. I particularly like the statue of Richard the Lionheart.


Richard the Lionheart - in front of The Houses of Parliament
View from Westminster Bridge looking upstream towards Millbank
St.Thomas' from Westminster Bridge. X marks my room when I was there almost a year ago
I hadn't had an MRI scan before so wasn't sure what to expect. The main thing I'd been told was that some patients found the whole process claustrophobic. Because the scan was concentrating on the digestive system I wasn't allowed to eat for the 8 hours prior to the test and was asked to arrive 1 hour early to drink a "special fluid". This fluid looked very much like wallpaper paste but was lemon flavoured. There was a litre to drink and as I got closer to the bottom of the jug the consistency really did feel like wallpaper paste. Next time I have to drink MRI prep I'll make sure I keep stirring it throughout.

The nurse put a cannula into my arm ready for the contrast dye to be introduced.

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

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

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

I'm pleased to say that nothing happened, not even a hint of having to rush off to the loo. In fact the effect of the prep liquid was very short lived.

The results weren't available straight away as they had to be interpreted by an MRI radiologist. There would be a three week wait before I saw my usual consultant.

Wednesday 23rd May 2012 - We spent the afternoon and evening at Chelsea Flower Show. I've only include this note to show that I was feeling fit at this point and most of the day was spent on my feet.

Saturday 26th May 2012 - starting to feel rough again. Will have to see how it goes over the weekend. Luckily I'm due to see me Gastroenterologist on Monday 28th.