Saturday 23rd October 2010 – We arrived home just before 2 o’clock. When you’re in hospital you can’t wait to get home but once you arrive…
I was sitting on the sofa, in the quiet of our lounge, when it hit me. I had gone from a noisy, bustling environment where something was always going on and always someone around if I was having problems. Suddenly I had been transported to an environment where I was on my own, with just the support of my family and friends who, apart from one of them, had no experience of someone recovering from a major operation or knowledge of stomas. Yes, there was a telephone number at St.Thomas’ to ring if you were having problems but that’s not the same as being able to call a nurse over or speak to a doctor face-to-face.
You feel very, very lonely and start to wonder if you were a little too eager to “escape” from hospital. It’s certainly something to be aware of if you do end up having major surgery and not something that I have ever discussed with the doctors or nurses.
I wasn’t sure how I would get to sleep that night in a flat bed. I had become used to the hi-tech one with its infinite, electric adjustment. I had found the most comfortable position was with my upper torso raised as it worked well with having a stoma.
Sunday 24th October 2010 – Our 30th Wedding Anniversary
I needn’t have worried about sleeping. Not a problem at all apart from having to get up during the night to attend to the pouch.
I had weighed myself the previous evening and had lost around 5 kilos since going into hospital. It was important to try to put it back on. Following the dietitian’s advice I embarked on a regime of crisps, crackers and doughnuts (and that was just between meals). I also had to fit in three high nutrition drinks and a litre of re-hydration liquid – all provided free – as when you have a stoma all your prescriptions are without charge.
I could not praise the NHS highly enough. The operation that I underwent and the subsequent aftercare would have cost tens of thousands of dollars in America. All the ward staff were professional, friendly and caring. The food was always well cooked and served piping hot. If you wanted a hot drink or snack at anytime you just had to ask.
I spent Sunday much as I had Saturday, taking it easy and listening to football on the radio. I was still eating well. Getting the weight back on wasn’t going to be a problem….and it was our 30th Wedding Anniversary.
Monday, 25th October 2010 – I had another good night’s sleep and woke up looking forward to breakfast. I received two follow up calls from St.Thomas’, as promised, to check that I was feeling alright and coping with my stoma. It sounded like I had been unfortunate, the previous week, with both the Enhanced Recovery Nurse and her deputy on holiday simultaneously. Had they been there I wouldn’t have needed to do the chasing around on the Thursday to ensure discharge by my own target date, 23rd October. Being looked after in Northumberland Ward) rather than Page Ward probably didn’t help but the overall standard of the care was unaffected.
Wednesday 27th October 2010 – It would have been useful if I was driving again but it would be at least another four weeks. The criteria – being able to do an effective emergency stop without feeling pain from the operation.
A neighbour very kindly took me to the doctor’s in the morning for a blood test to check the levels of salts and magnesium. These were the figures that were giving concern at St.Thomas’ a week ago. I would have to wait a couple of days for the results. Whilst at the surgery I took the opportunity to get the practice nurse to have a quick look at my operation scar to make sure it was healing up OK. It looked fine. One less thing to worry about.
At that time there were three levels of care under the NHS :
Primary : the service provided by the GP
Secondary : the consultants and departments at my local hospital who could provide the specialist services at the request of a GP
Tertiary : the specialist and intensive care service provided by the likes of St.Thomas’ on the occasions when surgery or procedures were too complex for a local hospital.
I had now left Tertiary Care and was back in the hands of Primary and Secondary Care. I needed an update with my GP so made an appointment with him for later the following week to discuss the way forward.
Likewise the stoma nurse at St.Thomas’ had now handed me over to the care of the one based at East Surrey Hospital. The new nurse gave me a ring to arrange a trip out to see me the next morning. I also received another follow-up call from the Enhanced Recovery Nurse to check on how things were going. I was able to report that my appetite was good and that, apart from my stoma stinging at times, I was coping well. She advised me to mention it to the stoma nurse.
Later that afternoon one of my oldest school friends, our best man 30 years ago, came round. It was good to do some reminiscing.
Thursday 28th October 2010 – The local stoma nurse visited me in the morning. She wanted to make sure I was coping with the mechanics of having the stoma and that I had all the supplies needed for the next few weeks. She was so very friendly and sympathetic that I was immediately put at my ease. I am constantly surprised by what one is prepared to talk about and do in the presence of a complete stranger when it is health related.
I explained that I was starting to get the hang of living with a stoma, particularly the changing routine. The stoma nurse at St.Thomas’ told me to change the pouch every two days but I decided I would feel a lot fresher and more confident if I did it daily. I settled upon changing it immediately after a shower each morning as that appeared to be a quiet point in the stoma “cycle”, meaning there was less chance of it “waking up” just as the pouch was removed. That was the situation that I wanted to avoid. It would inevitably happen but anything I could do to minimise the chance was worthwhile. I’ve written out the process in detail here as it might help demystify what dealing with a pouch can entail.
The secret of stress-free bag changing was to follow the same sequence each time. and get everything prepared before attempting to remove the old pouch. The new pouch should already have had its backplate cut to shape. It’s not worth trimming too many backplates in one go as the stoma can shrink over time and you might be left with a lot of pouches cut too large. I was able to leave the new pouch on a handily placed radiator so that the heat made the backplate flexible and moulded more easily to the shape of my abdomen. You can achieve the same effect by holding it between your hands for a couple of minutes
As a contingency I always had a spare pouch at the ready, just in case anything went wrong, and a torch on hand in the event of a power cut or a lightbulb blew. The last thing I wanted was to be mid-change and then have to do the rest in the dark.
I had been taught to place a foam washer around the stoma first and then fit the pouch to it. After the first few changes I decided it would be easier to fit the washer onto the backplate first. Whichever way you choose, the pouch is then fed carefully over the stoma and, ensuring that it is hanging close to the vertical, pressed into position making sure there is a good seal with the skin. The whole process took me under 10 minutes.
As you become used to your stoma it’s possible to work out how to “house train” it so that it’s quiet at changing time. This can be achieved by adjusting the time between eating and changing the pouch. For this reason I would get it done before breakfast each morning.
Once the nurse was happy that I was managing we had a general chat about diet and exercise. She reiterated the advice to eat crisps, crackers and doughnuts but asked me to cut down on the high nutrition drinks as I was taking in more fluids than she would recommend for someone with a stoma. Too much liquid in……
She explained why it was so important that I took it easy over the next few weeks and must not pick up any items over a kilo. There was a risk of developing a hernia whilst my abdominal muscles were so weak, having been cut through during the operation. She picked up the guitar I had been playing and said that it was too heavy for me to lift. I would have to be ultra cautious.
One of the leaflets I had been given said that the target for exercise was to walk for 30 minutes a day. She thought that this was excessive at this stage and told me to spend 2 hours each afternoon lying flat on the bed so that I would heal stretched out not hunched up. That lead me to rethink my days and do my best not to feel guilty about lazing around, doing nothing.
I had always found guilt difficult to deal with throughout my years of Crohn’s. As someone used to leading an active life it goes against the grain to be sitting back, taking things easy. There have also been those occasions when the disease has prevented me making trips or going out to meet friends. These situations just reinforced that guilt emotion.
Saturday 30th October 2010 – Another quiet day. When the dogs went for their walk in the afternoon I accompanied them. I had the energy but my stoma was still stinging, making walking uncomfortable. It was something to mention to the nurse when we next spoke. I decided not to drink the litre of re-hydration fluid to see if it affected my digestive balance (but mainly because it tasted so disgusting). Another question for the nurse: “Can I stop now?”
My digestive system appeared to be stabilising and enabled the high dose of loperamide, that I had been taking since the previous Friday, to be reduced. My taste buds also seemed to have recovered. I went down to my local surgery for a blood test in order to check that various readings were on the way to normalising.
November started quietly. A letter arrived from the GP saying that he wanted to discuss my recent blood test and one evening I received the final follow-up call from the Enhanced Recovery Nurse. I mentioned that my stoma was still sensitive and sore but my local stoma nurse was aware of the situation. I was eating well so she advised me I could stop the high energy drinks completely if my weight was stable. I didn’t speak to her again until the proposed date for the reversal operation was approaching.
The GP was concerned that my Hb level was low, just under 11, and should ideally have been nearer 14. This may have contributed to why I had been feeling so tired. The doctor’s advice was to eat iron rich foods but I might end up needing an iron infusion. Another blood test was planned for two weeks time to see if there was any improvement.
Whilst I had discontinued the re-hydration salts I decided to continue with the high energy drinks for the time being. I was given a prescription for another two month’s supply of Fortisip, I walked the short distance from the surgery to the chemist’s to drop in the prescription and managed quite easily. It looked like it was time to try a longer shopping trip in the near future.
I rang my consultant’s secretary at East Surrey Hospital who booked an appointment for 23rd November which should mean the blood test results would be back by then.
The next day a friend took us to the local supermarket. I was out of the house for two hours, managing well in the big, wide world. I was careful not to lift or carry any of the shopping bags as I had been warned, many times, not to put my operation scar at risk. A hernia was the last thing I needed.
It dawned on me that I could be driving myself in a couple of weeks time. In preparation I started the car to check the battery was still charged and then drove it up and down the drive a few times. Having not driven for four and a half weeks I needed to see how it felt. No problem.
Wednesday 10th November 2010 – The previous day’s activity translated into an excellent night’s sleep.When I got up the sun was shining and there was a clear blue sky. I had intended to spend the rest of the day indoors but it looked so inviting that I wrapped up well and went out into the garden. Could I manage some chores? Maybe, in hindsight, that wasn’t such a clever idea. I cut the lawn and collected up the fallen leaves with the aid of the ride-on mower that I had bought when we moved to the property. Whilst it didn’t require much physical work it did mean sitting in a fairly cramped position for an hour or so. I’m sure the stoma nurse would have gone spare if she knew what I had been up to but it felt good to be doing something useful rather than just sitting about, doing nothing.
That evening’s experiment was to see how a stoma coped with chicken korma washed down with Guinness. Would it still seem like a good idea in the morning?
Friday 12th November 2010 – an early start to get ready for another shopping trip. It all went to plan and we arrived home just before lunchtime. I was feeling fine and was suffering no ill effects from the previous night’s menu.
After lunch I answered a few emails including one from a colleague asking when I might be available for work again. My guess was a couple of weeks, once driving, but only doing half days to start off with. I set myself a target of being mobile in time to get to my next hospital appointment, on the 23rd, under my own steam.
At about a quarter past six I noticed that I appeared to be losing blood. I went off to the bathroom to investigate and found that the contents of my pouch had turned bright red. My immediate thought was that something had come apart internally and that I needed to get urgent medical attention. The level in the pouch was visibly rising but not so fast that I would need to empty it for a while.
My wife was outside feeding the ponies. I went out and explained to her that I had a problem and needed to get to hospital, quickly. Knowing it was a Friday night and that A&E was likely to be busy we decided to call 999 rather than trying to organise a lift down there. I rang our neighbour to warn her what was happening and ask her to come and let the dogs out and give the ponies their late night haynets. We had no idea how long I’d be down at the hospital.
The ambulance turned up very quickly. Seven minutes from call to arrival. Once onboard the crew went through a series of tests and then we were off. No siren or blue lights. It wasn’t a very good ride in the back of the ambulance as it swayed a lot negotiating the country lanes around where we live.
We arrived at East Surrey Hospital A&E at just after 7:15pm. One of the crew said: “we’re taking you into the Rapid Assessment Unit but don’t be fooled by the title“. His scepticism was unfounded and within 10 minutes I was laying on a bed having more tests and a cannula inserted into my arm. I was then taken to the MAU (Medical Assessment Unit) but they were full so we had to wait in the corridor. This was probably the worst part of the experience because you couldn’t see what progress was being made in clearing the queue. I’m not sure what time I was actually wheeled into the Unit but it was probably around half past nine.
I was seen by one of the doctors and we went through my medical history. I explained what the current problem was. I got the distinct feeling that he wasn’t keen to explore my stoma himself and didn’t even attempt to remove the bag to take a better look. Whilst he went off to ring one of the surgeons to see what should be done, a friendly porter appeared to take me down for chest and abdominal x-rays. He remarked how busy they were and that it hadn’t been this bad since July. Surprisingly enough Fridays and Saturdays were not usually their busiest nights.
With the x-rays complete I was wheeled back to the MAU and it looked like I had missed my place in the queue. I was told that the plan was for me to be taken to the SAU (Surgical Assessment Unit). In the meantime the doctor came back and said that he needed to take an arterial blood sample which would probably take a couple of goes and would be very painful! Thanks for the warning. I needn’t have worried as he hit the artery first time and I had become very used to having needles, of varying lengths, stuck in me.
Rather than call for another porter the sister wheeled me down to the SAU herself. I was told that the doctor knew I was there and would be along to see me. When it reached 11 o’clock, and I’d still not seen anybody, my wife went off to find out what was going on. The doctor was seeing another patient but would be with me shortly. A few minutes later she appeared and apologised that it would be necessary to ask me all the questions again. I had remembered to bring a copy of the discharge letter from St.Thomas’ which explained what the surgeon had done. As we had been unable to understand it completely, due to the long, medical terms, the doctor gave us a translation.
As she specialised in surgical cases she had no fear of removing the pouch. She then examined my stoma, inside and out, and came to the conclusion that the bleeding was external but I was right to have come down to the hospital. I asked her if she was considering giving me a blood transfusion but she said that unless my blood count was getting worse she was happy for me to be discharged. She did give me the option of staying in overnight if I was concerned but I decided that I would be OK. Other patients needs would be far greater than mine.
There was a short wait whilst the nurse removed the cannula and then I could get dressed. I rang my sister who very kindly came out and picked us up. We were home just gone one o’clock. Not what we had planned for our Friday evening. I was famished as I hadn’t eaten or drunk anything since 5:30pm. I grabbed some toast and a coffee and then went to sleep sitting up on the sofa.
What we thought had gone wrong
The stoma itself is tough and can cope with the digestive acid present in the output. The area around the stoma is “normal” skin and cannot cope with it. The pouch had a flexible plastic, adhesive backplate and the first few that I used had a pre-formed opening cut in them. This opening needed to be trimmed to fit exactly around the stoma. As the stoma gets used to being external to the body it shrinks a little and so the opening in the backplate needs to be adjusted accordingly. If there is a gap, the digestive acid can come in contact with the normal skin causing it to become raw. In my case the skin had become so sore that it started bleeding. It was surprising just how much blood had collected in the pouch.
The following weekend we should have been taking a trip down to Bournemouth for a party to celebrate my mother-in-law’s 90th birthday but a 200-mile round trip whether as driver or passenger would not have been sensible. My wife didn’t think I should be left alone for any length of time, so we both spent the day at home. I really needed to get a good night’s sleep.
Monday 15th November 2010 – after breakfast I rang the stoma nurse to tell her what happened on Friday night and to ask her advice on how to proceed. I was a bit wary of putting on a new bag in case it set the bleeding off again. She told me to bite the bullet and have a go and let her know how I got on. It worked out fine.
There was one other phone call to make – a call to St.Thomas’ to explain what had happened as they may have wanted to bring forward the follow-up appointment with the surgeon, currently planned for early January. I rang the Enhanced Recovery Nurse and went through the events. She said that it was right to contact them and that they wanted to know about any problems I was encountering.
After lunch I had a call from East Surrey Hospital telling me that an appointment had been arranged for Thursday, at 9:00am, to meet with the gastroenterologist. This would be in addition to my other appointment already booked for Tuesday week. I wasn’t clear if this had been prompted by my trip to A&E or the call to St.Thomas’.
To get to the hospital it would be best if I was independently mobile. I would try driving the car again, this time with my seatbelt on, and do a few emergency stops on our drive. It seemed fine and there was certainly no pain from the seatbelt. The only difficulty was turning to look over my shoulder when reversing but I suppose that’s what mirrors are for.
Wednesday 17th November 2010 – my first time out driving for six weeks. I drove about a mile down to the doctor’s. I felt fine so decided I would drive to the hospital the next day.
New supplies of pouches arrived. I had ordered them without the holes in the backing plates preformed as this would give me the opportunity to cut them to suit my current (shrinking) anatomy. I took my time making a template to work from as I knew, following the recent incident, how important it was to get a good, close fit.
Thursday 18th November 2010 – East Surrey Hospital – A very early start to be at the hospital for 9:00am as there was the daily routine to go through first. Using my new template I carefully cut a backplate to the new shape. It was a much better fit than previous ones.
With such an early appointment there was plenty of room in the main car park. Early mornings had their advantages after all. The appointment was with the lead gastroenterologist who I hadn’t seen since the decision to send me to St.Thomas’ for surgery. It appeared that this current appointment was planned a couple of weeks previously as the follow up to the operation, not my recent visit to A&E after all.
It was an informative meeting and gave the impression that, so far, I had made a good recovery. He was surprised I only spent two weeks in hospital. Crohn’s patients, that undergo complex surgery, have a tendency to end up suffering from other complications and spending longer than usual in hospital. I was keeping my fingers crossed that last Friday was my only “complication”. I pointed out that under the Enhanced Recovery Scheme the target was set for me to be discharged in under one week. His reply was that the Enhanced Recovery targets were based on cancer surgery which is generally far simpler than Crohn’s surgery.
He now wanted my care to pass back to East Surrey and for me to be looked after jointly by himself and a surgeon. I was given an appointment for their joint clinic the following Monday in lieu of the one already planned for Tuesday. Before I left he asked me to have yet another blood test. I made my way down to the Phlebotomy Dept. where I waited and waited until it was my turn, wondering why it takes so long given that the actual process of taking the sample is very quick.
I was home just before midday. It was the longest I had been out since leaving St.Thomas’. I hadn’t suffered any ill effects. Time for a good, unhealthy lunch.
The next big hurdle would be getting back to work, which was partly physical but more of a mental challenge, like going back to school after the long summer holidays. I needed to be confident that I could cope with my pouch for an extended period, away from the comfort of home, and surrounded by colleagues who might not know about my surgery. I would work on it over the next few days.