Sunday 12th June 2011 – I had a room reserved at the Simon Patient Hotel in the block adjacent to the main St.Thomas’ Hospital building. It provided basic rooms for patients travelling from further afield that needed to make an early start in the morning. It was very gloomy outside and raining hard.
I asked about dinner and was told it would be served at six o’clock. My brother-in-law and nephew, who were already up in London, turned up to accompany my wife home. We said our goodbyes and I settled down to wait for the meal. There were about a dozen of us in the dining area but nobody was saying much. When the meal arrived it was the usual St.Thomas’ hospital food, not cordon bleu, but very palatable and served hot. I was given strict instructions not to eat after 2am.
I went to my room and put some credit on the bedside TV, spending the rest of the evening watching the Canadian Grand Prix. Jensen Button beat Vettel on the last corner. A very good end to the evening and so to bed. I managed to sleep as, once again, I was managing to be very laid back about the whole experience.
Monday 13th June 2011 – one of the staff gave me an alarm call at 5:30am and brought me two, pre-op, carbohydrate loading drinks. I had a shower, drank the drinks and, just before 7am, made my way over to the Surgical Admissions Lounge in the main hospital building. I joined a small queue and at exactly seven o’clock we were let into the waiting room. We were asked to take seats and given questionnaires to fill in. They told me that I was second on the list so likely to be operated on around nine o’clock.
A few minutes later I was shown to a sideroom where I had to answer further questions and was then asked to change into a hospital gown, ready for the operation. One of the house doctors 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 and it was back to waiting.
The next visitor was the research student who was looking into possible cures for Crohn’s disease. He was the one who had called the previous 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 nine o’clock my clothes and possessions were locked into a trolley and I was taken to a seat just outside the anaesthesia room. It looked like the operation would go ahead on time.
A magazine had been left in the waiting area so at least there was something to read whilst I waited. I was very grateful for that as the operation before mine took a lot longer than they planned. Nobody had told me and it wasn’t until half past eleven that I walked into the anaesthesia room and laid down on the trolley. Did I get wound up or anxious? No, not at all.
As I lay there, looking at the ceiling, a friendly face appeared. It was the lead surgeon who I knew from my ileostomy experience. After a few pleasantries he asked what Crohn’s medication I had been on during the lead 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. 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 those words much beloved of his profession: “I’m just going to give you something to relax you” and I knew that the next thing I would see would be the Recovery Room.
This may sound odd but I had really been looking forward to the operation, not simply because I would be losing the stoma, but for that split second of incredible serenity when 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 from this point onwards. Nothing that you can consciously influence. Just trust in fate and drift off. I thought I was alone in this feeling but have since met another IBD patient who feels the same way.
The surgeon’s record shows that I was taken into theatre just before midday and the first incision made six minutes later. The operation lasted a little over the hour and I was wheeled into Recovery 15 minutes after that. By then I was “alert and orientated” and showing a “good colour”. I was complaining of mild pain and was given morphine to combat it.
I was encouraged to drink sips of water straight away. The operation had gone as planned and I was stoma-less. One slight snag – my pool of platelets hadn’t made it to Recovery yet. 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 5pm and the infusion could start. I was closely monitored during the hour-long process as they needed to ensure I wasn’t showing any adverse reactions. At half past six I was collected and taken up to Page Ward, into the bay by the Nurse’s station so they could keep an eye on me. Standard practice for anyone following surgery. This was the ward I should have been on for the main operation in October 2010. I had finally made it there some seven months later.
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 some pain from my scar although nothing too bad. No epidural this time but pain relief was always made available, mostly in the form of paracetamol with liquid morphine as a back up.
I was already mobile and managed several walks around the central ward area. The nurse had me down for a full, soft diet and I happily ate breakfast and lunch. So far so good.
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 probably clear, by now, that I love London, especially its architecture. The view from the ward was superb. As with my last stay 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 made me feel better, and changed into pyjamas rather than a medical gown. It was only 24 hours since the operation.
I was moved to another side-ward but still no window seat. Then I heard one of the nurses tell the patient in the bed next to the window that he would be allowed to go home that night. I saw my chance and asked if I could take his place. This may seem petty but I remembered, 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.
At dinner time I noticed that my appetite was starting to wane. Maybe my earlier optimism was ill-founded. Could this be the beginning of nausea again?
Wednesday 15th June 2011 – my stomach and abdomen were expanding. It looked like it was the same problem as after my last operation – post-operative ileus. My digestive system was going into lockdown once again. It was reacting to being handled and had stopped 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 been having with azathioprine and my low platelet count. I told him 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 about my blood.
This was the first time I had met this particular consultant and we hit it off immediately. I was offered the chance of moving my treatment to St.Thomas’, under his care, and I’m pleased to say that he has been my regular IBD specialist ever since. I definitely made the right choice.
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 antibiotic that had been found to help with the recovery process and to keep the recurrence of Crohn’s at bay.
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, the area I was now missing. Platelets are also affected by haemoglobin levels, so my low red cell count was 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 HIV test.
I was pleased to see the way St.Thomas’ worked in this joined-up manner. The surgeon had spoken to the Gastroenterology department and they, in turn, had spoken to Haematology. Consultants from both departments had now seen me and arrived at an action plan. I knew this was easier with an in-patient but it was still gratifying to see how well it worked.
During the afternoon I was sitting in bed, feeling thoroughly miserable due to the effects of the nausea when I received a text message from East Surrey Hospital to remind me that I had an IBD outpatient’s appointment for the following Monday. I saw red. I had asked for this to be cancelled some weeks previously, 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 emailed the ESH IBD Dept
“Just before I went into theatre on Monday afternoon the surgeon asked me what treatment I was currently on 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’. I have already met with both of them and have been prescribed the necessary 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 that I never received an acknowledgement. At one point I had been asked if I would like to join their patient panel. I wondered if that invitation was still open, probably not.
The nausea was preventing me from drinking the required amount of fluids. Dehydration was a major concern and my heart rate was starting to drop. It was decided I would need to have the inevitable drip. Over the course of the day I took on board three litres intravenously.
Thursday 16th June 2011 – still unable to face any food or drink. I spent the rest of the day quietly but still had no appetite and was given a further two litres of fluid via the cannula. I was starting to feel under pressure – the nurses were trying to encourage me to eat; my system was telling me it couldn’t manage anything, but I knew that I would not be allowed home until it was resolved.
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 which turned out to be Peptac (like Gaviscon). I didn’t realise it could be diluted so I attempted to swallow it straight. My body had different ideas. Quick, where’s the bowl? At least I felt better afterwards as some of the pressure on my system had been alleviated.
Friday 17th June 2011 – no improvement. When the phlebotomist came round for the daily blood test she produced seven 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 pushed me down there and back, in a wheelchair, herself.
When she saw the results she decided I needed an NG (naso-gastric) tube. I could guess what was 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. The tube reached it’s 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 connected a syringe to see what liquid could be drawn off. This was probably my lowest point, both physically and metaphorically.
It was difficult to get any sleep with a tube running down the back of my throat but on the positive side the pressure on my stomach was further relieved and the nausea lifted. I recalled being told, back in September 2010, that tubes down the throat were a thing of the past. The Enhanced Recovery Nurse had said: “if I see a tube up someone’s nose I want to know why”. In this case I suppose it was “needs must”.
Saturday 18th June 2011 – I had a visit from my wife and sister. My sister took one look at the tube, held in position with a piece of tape 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 the film “Water for 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 that takes place over a seven mile course between the Palaces of Greenwich and Westminster. 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 1900s. This may explain my love of the river and its working craft.
On the ward round the doctor had asked for another X-ray to be taken. Being the weekend meant that the main department was closed so I had to go to the A&E facility. I offered to walk down on my own but a porter had already been called and I ended up being taken there in a wheelchair. As an in-patient I was not kept waiting for very long. Once the X-ray was completed it didn’t seem worth waiting for another porter to be called so I walked back to the ward and was pleased 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 this time. At least I hadn’t felt the need for any more painkillers so my operation must have been healing.
Sunday 19th June 2011 – I didn’t get a very good night’s sleep because of the tube up my nose. To make matters worse my digestive system was still not up and running.
Over the weekend the doctors were fairly stretched and the nurses had not 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 were no specialist IBD doctors on duty until the next day so the tube would have to stay in place for another night.
Monday 20th June 2011 – One week on from operation day. I couldn’t wait until the doctors did their ward round so that 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 the X-ray before she could give the go-ahead for removal. I spent a very frustrating morning catching glimpses of her in other parts of the ward and then, finally, she came over to see me. “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 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 had a bed on the north side of the hospital which faced the Houses of Parliament.
It must have been fate as within ten minutes a nurse said that they wanted my current bedspace and would I mind moving around to the other side of the ward. We set off for the 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 now. My appetite had still not returned properly but my digestive system was in overdrive. A good sign.
Having made sure I brought my own, rather stylish, Hugo Boss pyjamas with me to hospital. (Marks & Spencer to be honest). I was surprised to find that there were plenty of NHS ones available, all in glorious orange. It seemed a shame not to use them, especially in case there were any “leakages” but they did rather make patients look as if they were being held in Guantanamo Bay.
Tuesday 21st June 2011 – I was right on both counts. I did sleep well in the peace and quiet of the single room and my appetite was starting to come back. I managed some sandwiches and apple crumble for lunch.
The sister was now talking about: “when you go home” so it looked like it could be imminent, possibly the next day. It was time to practise wearing outside clothes again and to make sure I was OK walking in the big, wide world. I set myself the target of reaching the centre of Westminster Bridge. It was quite miserable and very, very cold but I made it and took a picture to prove it.
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. That was 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 very serious blood disorder lurking behind the low platelet issue.
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 via yet another cannula. The infusion took under an hour but I can’t say I ended up feeling any different.
I rang the friend who was going to give me a lift home on his way back from work when I was discharged. He reckoned it would be at least a two hour trip during the rush hour. Given the fragile nature of my digestive system, and no longer having the “storage capacity” of a stoma, I was not sure that would be a good idea. I decided to look into using public transport instead.
Wednesday 22nd June 2011 – the doctors swept into the room and decided I could be discharged 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 the 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 – 2pm. It was now ten days since the operation and time to have my stitches removed. The doctor came round and said: “you’re good 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. 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 to, it would help.
I rang my wife to say: “we’re on”.
She arrived just after two 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 black cab (that was maroon) on the way to Victoria Station. At first I couldn’t work out the route we were taking but the driver knew his stuff and it only took five minutes or so. We arrived at Victoria in time for the earlier, fast train to Redhill. My sister was waiting to take us on the final leg of the journey home.
Another stay in St.Thomas’ was over. Hopefully I wouldn’t need to go back there as an in-patient. I had nothing but praise for the team of surgeons, doctors, nurses and ward assistants. Everyone was courteous, professional and cheerful. No wonder the hospital was rated highly by its patients. I would, and do, recommend it to anyone.
Friday 24th June 2011 – back in familiar surroundings and this time it felt different from after the previous surgery. I was far more mobiles it would be considered minor surgery. At last I could relax as there was no longer any pressure from nurses or doctors making sure that I was eating, even though I didn’t feel like it. By biding my time my appetite slowly returned over the next few days. I could then concentrate on my recuperation and making the return to work.