Crohn's Disease - Chapter 3 - 2010 - You NEED an Operation

This chapter covers the period from when an operation became a certainty up to my last night before this major surgery.

We had known for the last couple of years that I would inevitably end up under the knife, it was just a question of when. We had exhausted all the non-surgical options in 2009 so at some point in 2010 I would be going into hospital. As the end of 2009 approached my condition was getting worse and I was finding working 5 day weeks a problem. As I work for myself I was able to help the situation by stopping working for one of my clients and just working a three day week for the other one. Sometimes I was able to work from home and that also helped.

Around February 2010 I began to feel a bit better and started some limited work with my second client on the basis that at some juncture during the year I would need to stop again for an extended period.
Crohn's Disease - CT scan showing loops and fistulas
CT Scan showing the "Octopus within"
In May I had another CT scan at East Surrey Hospital and then a follow-up appointment with my usual consultant to discuss the way forward. The repeat scan showed no improvement from the previous one so he said I should expect to have had the operation, there, within 4 weeks, and to then allow a couple of months recuperation. I went back and told my clients that I wouldn't be available for around three months over the summer.

A meeting was arranged with my consultant, his boss and their surgeon to talk through the process. My ever supportive wife accompanied me to the meeting. Because it had been arranged at short notice it was held in their office. A small room with little ventilation and just three chairs. It was summer and the room quickly became very stuffy. We sat on two of the chairs, the boss on the third. My consultant was standing eating a Mars Bar and the surgeon was perched on the edge of the desk. It was all very laid back.

Strange as it may seem I think it was at this point I realised the NHS was changing for the better and patient involvement was now being encouraged. The meeting was actually their weekly multi-disciplinary get together and we had been specially invited along.

After the initial pleasantries they cut to the chase. Having looked again at the CT scan they concluded that the operation and aftercare were too complex for the facilities at East Surrey and that they were referring me to St.Thomas' Hospital in Westminster. The surgeon that would be operating on me was one of the top men in the country and two of them knew him very well as they had been colleagues when they had also worked at St.Thomas’.

I would need to go up to London to meet the surgeon, discuss the operation and then be accepted onto his “list”. They couldn’t say how long it would be until the operation took place as it depended upon how full his “list” was. It would certainly be months, not weeks.

This was all rather a lot to take in in one go, having already started to prepare mentally for an operation in the next four weeks. I went back to my clients and explained that I would be available over the summer after all. They were both very understanding, even though one of them had brought in a new resource to replace me, and I did continue to work for them for as long as possible.

There had been a degree of waiting throughout this process, usually for a letter to be written or a referral to be made and I have learned that you really need to take matters into your own hands to drive things along. If you are referred to another hospital they have a 2 week target for you getting your first appointment. I hadn't heard from St. Thomas' within this timescale so decided to find out what was happening. I dug down into their website and found a number to call. As it turned out it wasn't the right one but the guy on the other end said that he would still be able to help me. Refreshing. He realised that they had exceeded their two week target so he double booked me into the next possible outpatients’ clinic with the surgeon. I did a little more research on the internet and found, as I had been told, that he was one of the top men in the country specialising in colorectal surgery and, er, hemorrhoids.

On 3rd August I went up to London to meet him. My wife came with me. It was our first visit to St.Thomas’. We knew roughly where it was but hadn’t appreciated it’s prime location on the South Bank of the Thames opposite the Houses of Parliament. Walking up from Waterloo Station you pass the Millennium Wheel and then catch sight of the modern hospital building that sits in front of the original buildings.
Crohn's Disease - walk to St.Thomas' from Waterloo Station
Walking up from Waterloo
I had always been treated in smallish, local hospitals that were only two or three stories high so, to me, the 12 storey block looked impressive. We made our way into the main reception area and there was another surprise – branches of Marks and Spencer, W H Smith, Costa Coffee and other retail outlets. I hadn’t seen a hospital like this before, this looked promising.

We wended our way down one of the large main corridors and checked in at Outpatients reception. That’s when the surroundings started to look more familiar. We sat in a large, windowless waiting area with rows of chairs facing a number of consulting rooms. A couple of televisions were showing daytime TV but few seemed to be watching them.

When it was my turn I was shown through to the surgeon’s own office. He was dressed in a maroon uniform which seems to be the standard outfit for surgeons when they aren’t actually operating. At this point the full reality of the situation started to hit me. I was sitting opposite someone who, in a few weeks time, would be "fighting with the octopus".

We briefly went through my Crohn’s history, all the way back to 1978, and talked through the planned operation. He explained that he operated on a Monday and always went on holiday in September. With that he pulled out his diary and worked out that the earliest date for my operation would be 11th October. He stuck my barcode on the page and the date was set. He said that his team would be contacting me with all the details of the admissions process. The CT scan showed that I would need major surgery but one detail wasn't clear so he wanted to stick a camera “where the sun don't shine” to check exactly what the situation was. He was concerned that the small bowel had joined onto my colon and perforated. If I was lucky the colon was just an “innocent bystander” and could be left alone. It might however be necessary to have a temporary stoma. I thought - "Whatever. I've haven't heard of stomas but I have heard of "bags". I wonder what they involve".

I went and saw the surgeon again a couple of weeks later and he carried out a flexible sigmoidoscopy. Quite fascinating as I got to watch in glorious, living colour on a strategically positioned monitor. He was pleased with what he saw and it did, indeed, look as if the colon was unaffected. As a precaution though he explained that it might still be necessary for me to have the stoma i.e. be fitted with a bag. He wouldn't know one way or the the other until he opened me up.

So we now knew the operation date and I could tell my clients when I would be stopping work. My colleagues were asking me to keep in touch so I decided to bite the bullet and start a blog, something I knew little about. If anyone wanted to know what was happening they could log on and read all about it. An old colleague of mine, who was now working for a pharmaceutical company, said other Crohnies might find it useful to read of another sufferer’s experiences and so the blog began.

Oddly enough I started to feel a lot better. I don’t know whether this was relief at finally knowing when the operation would be or the fact I had a bit longer to get everything in order before going into hospital. Whatever the reason, I was able to get on with lots of outstanding chores so that it would be easier to cope during my recuperation period. I was also able to keep earning, paying the mortgage and planning for the future.

(Don't read this bit if you are of a nervous disposition. I subsequently remembered where I had heard of "bags" before. Many years ago there was a story in the "Strange but True" section of Private Eye magazine about a local authority who had closed down and sold off a set of public conveniences. It was happening even then. The building was subsequently converted into a cafe. The closure so annoyed a local disabled man that he decided to protest. He propelled his wheelchair into the crowded cafe and launched a full "bag" at the wall. You can guess the rest. I wonder if he was a crohnie?)

DIARY ENTRIES

Friday. 24th September 2010 - I spent my last full day at work on Thursday 23rd with an indeterminate return date. Just a half day the following week to do a handover and then that would be it. The final countdown would start for going "inside", as my other half called it. I was a bit worried that someone might get the wrong end of the stick and would think I had done something criminal. Come to think of it I had taken up playing the guitar again and started writing this blog so maybe that wouldn't be too far from the truth.

Last time I went "inside", 30 years ago, it was with blue flashing lights and a siren going. This time there have been months of anticipation and a chance to bore anyone who would listen. I could have stopped writing at this point but decided it might just help someone else who will be going on a similar journey. (I promise not to use "journey" again, unless it really is a journey from A to B)

The "to-do" list for the next week was growing - get car MOT'd, go to recycling centre, write our wills (you have to be ready for every eventuality), take a Lung Function Test and attend Pre-assessment Clinic with Colorectal Enhanced Recovery Nurse. This last one sounded a bit scary so a quick Google and all was explained. When you elect to have surgery it gives the surgical team a chance to plan the lead up to the operation, the Op itself and the recovery programme. Plans and programmes - music to my ears. Of all the documents I found about Enhanced Recovery Programme there was one produced by Gateshead NHS Foundation Trust that gave the clearest outline of what was involved. I wouldn't suggest anyone squeamish reads it but it really does show how the NHS has come on leaps and bounds over the last few years.

The final preparations for the elective surgery started at the end of September and at this point I started recording events as they happened. What follows is my pre-op diary, with a few comments added in hindsight.

Tuesday, 28th September 2010 - PRE-OPERATIVE ASSESSMENT CLINIC

Today's visit to St.Thomas's was to meet the Colorectal Enhanced Recovery Nurse (ERN). I’d already researched what Enhanced Recovery meant. It’s a technique first employed with patients going through bowel cancer surgery and has now been applied to other surgical areas. The essence of it is to accelerate the recovery process and in doing so alleviate some of the possible side effects of spending a lengthy period in a hospital bed.
Crohn's Disease - St.Thomas' Hospital, Westminster
St.Thomas' Hospital
The team ask your wife or partner to accompany you so that they also learn about the process. We met the nurse in her office on the 11th floor. The pre-operative assessment took around two hours. She took us through what was planned from now through to the second operation when the temporary stoma is closed (Reversal). The ERN co-ordinates the team of professionals that is dealing with you and keeps in contact once you've been discharged. It is entirely voluntary whether you choose to be on the scheme, or not, but to me it seemed a no-brainer as the advantages far outstrip the disadvantages. (Post op note : I may now have a different opinion if I have to go through it again but will cover that much later on).

A target date is set for your discharge with the caveat - “providing all goes well with both the operation and the recovery”. You don't get sent home if you’re not in a fit state and I can vouch for that. You do hear horror stories of patients being discharged too soon but I never saw this happen.

My dates were :

Admission - 10th October i.e. stay in overnight so you can be prepared for surgery the next morning
Operation - early morning 11th October
Discharge - 16th October (with that big caveat mentioned above)

The most surprising bit for me was just how much has changed since I was last in hospital 31 years ago. Admittedly that last time was an emergency so no chance to plan anything but the level of information that the patient is now given is fantastic. You are told exactly what to expect at each stage of your treatment.

The biggest changes are :

No pre-op preparation any more. You can eat normally up to 6 hours before going into theatre and drink clear liquids up to 2 hours before.

No more tubes up the nose or up the arm over the shoulder into the top of the heart. (That’s the theory at least. I had reason to find out that reality does not always follow the theory. More of that a lot later on as well)

No more nil by mouth for 3 weeks after the operation. You are expected to drink as soon as you come round from the anesthetic and eat a normal meal the following day.

Superglue instead of stitches or staples. (Again the reality was I ended up being stapled)

The nurse was a little concerned that I had lost 10kg over the last 18 months. (I was quite pleased to have lost a bit of weight but in Crohn's patients it is seen as one of the signs that your digestive system is not functioning correctly). You normally get given high energy drinks to give your body a boost on the two days preceding the operation. In my case I was told to drink 3 bottles a day from now until 10th October. That's an extra 900 calories a day. I had to get used to this drink as it was also to be used throughout the recovery.

…and the tests - Mrs.A (swabs taken from your nose, back of throat and between your legs), blood samples and an ECG. They must have all been OK as I didn’t hear to the contrary. The very final exercise was to measure around my biceps and then to squeeze a hand held device that records the muscle power in your arm. Apparently these would be repeated before I was discharged so they could check that I had not lost too much "condition" during my "confinement".

She then took us to Page Ward, on the other side of the building, where they were expecting me to recuperate after the operation. Bear in mind that I hadn't stayed in a hospital ward since 1979 so what I was seeing was a bit of a culture shock. The ward was so light and airy, arranged in 4 bed bays but the overriding impression was created by the simply amazing views from every window. I left the Ward with a very warm feeling.
Crohn's Disease - view from St.Thomas' Hospital - Page Ward
View from 11th Floor at St.Thomas'
We returned home with lots of leaflets to read and bottles of drink (Fortisip) to consume. We had been given the Nurse's mobile number in case I had any questions over the next few days.

Wednesday, 29th September 2010 - LUNG FUNCTION TEST


Today's test was at Guy's for Lung Function - to find out how fit you are. I'd seen the first test on TV. Stick a tube in your mouth, inhale as deeply as possible and then exhale, squeezing every last bit of air out of your lungs. Repeat several times. I found this quite painful.

The second test was riding an exercise bike whilst wired up to a heart monitor , a breathing tube in the mouth, a heart rate monitor clipped to the ear and a blood pressure band round the arm. It wasn't my heart and lungs that couldn't cope, it was my legs which finally gave in.

That left one more visit to London the following week to have a large “X marks the spot” drawn on my abdomen by the stoma nurse. I hoped the cross would still be intact on the 12th October.

I always try and incorporate a bit of exploring when I have an appointment and visit some of the streets or backstreets in the vicinity. It was the first time I had seen "The Shard" close up. Very imposing and impressive and right next to Guy’s. I decided that each time I visit I will take a photograph to see how it is progressing.

The Shard
"The Shard"
Friday, 8th October 2010 - X MARKS THE SPOT

My final visit to St.Thomas's, as an outpatient, before the operation. I had to visit the stoma nurse in case I ended up having to have a bag fitted. Obviously I was hoping that it wouldn’t happen but you need to cover all the bases. As the saying goes " Sh*t happens", and it's quite relevant in this case!

We started by discussing all the implications of being stoma’d. She told me they were not that difficult to deal with and it should only be for 6 months. She then looked at my physique (= bulges) and how I wore my trousers so she could position the stoma in the optimum place. Once she was happy with the location she marked it. I now had a large black cross on the right side of my abdomen, marked with indelible felt pen and covered by a waterproof sticker. I was still hopeful that it would be intact after the operation.
Crohn's Disease - locating the stoma - X marks the spot
X marks the spot
I told the nurse that I intended to keep my blog going whilst I was in hospital. She looked rather sceptically at me and said that for the first few days I would have an attention span of about 5 minutes and it was unlikely that I would feel like doing anything. She was partly right.

I asked what time my operation was likely to start. Surgery usually began at 8:00am but until they saw the full list of operations they wouldn’t be able to tell me where I would be in the sequence. They might have a better idea when I was admitted on the Sunday. When we saw the Enhanced Recovery Nurse the previous week she said that the surgeon likes to do his "interesting" patients early morning and that I was one of the "interesting" ones. It brought to mind the Chinese saying/curse "May you live in interesting times".

From then on it was just a waiting game until Sunday when I would get the call telling me which ward I needed to report to.

Saturday, 9th October 2010 - LAST DAY OF FREEDOM

This was the last full day of being able to drive for at least six weeks so we decided to go out for the afternoon to see the autumn tints at Sheffield Park.
Sheffield Park lake
Sheffield Park
In the evening I made a final list of chores that needed to be completed the following day before I got the call from St.Thomas's telling me which ward to report to and when they wanted me. I decided to see just how far down the list I could get. I was under strict instructions not to leave home until the hospital had rung but had been assured that they would find me a bed and that the op would go ahead on Monday unless the surgeon fell off his bike again. Since he had done that last year they were hoping he had learned his lesson.

Sunday, 10th October 2010 - THE WAITING GAME


I always knew that this day would be the worst in the process so far. The admission letter told me not to leave home until the hospital had contacted me with the name of the ward I was to report to and at what time.

All the chores were completed in the morning and then we waited for the call. It got to half past two and the tension was just too great so I rang the ward I thought I was being admitted to. Rather worryingly I was told that they had no record of me but would do some ringing around and let me know what was happening.

About 10 minutes later I got a call to say that there wasn't an available bed in Page Ward but I would be expected in Howard Ward instead. They would call me back to confirm when I was needed. We had a quick look at the St.Thomas's website and couldn't see Howard Ward listed. More worry.

I then got a call from Howard Ward to say that I could come in as soon as I was ready and that I was getting a single room in the Private wing of the hospital but not to get too comfortable as it was for one night only.

This really was the most stressful time for myself and my wife but as soon as we set off for London I relaxed and then became positively chilled out. Unfortunately it wasn't so easy for my wife. If anything my laid back attitude made those around me more anxious.

Crohn's Disease - St.Thomas' Hospital - Howard Ward
My private room - one night only
My sister picked us up and took us down to the station and we all boarded the train to Waterloo. We walked up from the station to St.Thomas’ and arrived just after half past four. Howard Ward is on the twelfth (top) floor of the hospital and entrance is via a set of locked doors. It took a while to find someone to let us in and eventually were greeted by a friendly ward sister who showed us to my room. The first impression was “Wow, what a view” as we looked south down the Thames and over to the Houses of Parliament.

Just before six o’clock I said my goodbyes to my wife and sister, wondering, at the back of my mind, if that would be the last time I would see them. I don't want to sound over dramatic but it was a possibility. Apart from that one doubt I was remarkably calm and collected (and have been so ever since, no matter what my health has thrown at me. I wish I could pass the secret on to others but it simply happened and not as the result of a conscious effort).

The ward sister returned to check my details, blood pressure and heart rate and take some MRSA swabs. Then we were joined by a doctor who stuck a cannula in the back of my hand and took some blood samples. I was allowed to eat up until midnight but after that it was to be fluids only. My dinner arrived and I ate it whilst watching the river traffic passing up and down the Thames. Mainly pleasure boats packed with people for an evening cruise, taking advantage of the autumn sunshine.

Crohn's Disease - St.Thomas' Hospital - River Thames from Howard Ward
Ready for dinner
When I had finished my dinner I was connected up to a drip and told to expect another visit from a doctor around 11:00pm.

Once you've been operated on they like to get you down into the main surgical wards as there are more staff around to keep an eye on you. I still didn’t know what time the operation would be and wouldn’t be able to find out until the surgeon arrived in the morning.

I took the opportunity to spend the next few minutes chilling out, watching the sun set over the River Thames. The next update to my blog would be after the operation. It would probably be at least Tuesday before I would be in a fit state to type further entries.

Into the unknown........but what a view.

Crohn's Disease - St.Thomas' Hospital - River Thames from Howard Ward
The view from Howard Ward - looking upstream towards Battersea
Monday, 11th October 2010 - PRE OP

I was amazed that I managed to get some sleep. I was woken up at 2:00am by one of the nurses to connect a new drip and then went back to sleep. The next time I woke it was a glorious autumn morning. One of the house doctors came in, introduced himself and explained I was the last on the list for surgery as I was the most "interesting" and they didn’t know how long the operation would take. He answered any questions I had and then went off to the operating theatre. I was given DVT stockings and a surgical gown to put on. I lay on the bed watching the sun rise over Millbank.

Crohn's Disease - St.Thomas' Hospital - River Thames from Howard Ward
The sun rising over the old part of St.Thomas'
I was then visited by the anesthetist. He said that it looked like I would be going down to theatre at 11:00am and it could be a 5 hour operation. There were some formalities that he needed to run through which revolved around risks and consent forms. He explained that they intended to use an epidural for pain control. Whilst this had proved very effective there were a number of risks involved. He went through each one in turn and gave me the probability of each occurring. At the end of it I signed a consent form that confirmed I understood the risks and I was prepared to go ahead with the operation.

I was hoping to add to the blog after the operation later that night but wasn’t sure if I would have access as my iPad as it was going to be locked away in the Cashier's Office for safe keeping. It really depended upon what time I came out of recovery.

Follow this link for the next Chapter - Ileostomy and Recovery