Crohn's Disease - Chapter 5 - October to December 2010 - learning to live with a stoma


This chapter covers the period between my discharge from St.Thomas' on 23rd October up until early December 2010. It was an important period - learning to cope outside the cozy environment of the ward - and - learning to live with a stoma. In December I decided to suspend blogging as from a medical point of view not a lot was happening. I did however get to ring 999 and have a ride in an ambulance (without the blues and twos!)

Saturday, 23 October 2010

Just before 2 o'clock we were home. I wasn't sure how I would get to sleep that night in a flat bed. The hospital bed one was electric and tilted up at one end and that's what I had got used to with the stoma.

When you're in hospital you can't wait to get home but once you get there...

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 there was always something 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 who had no expertise in nursing someone recovering from a major operation or learning to cope with a stoma. Yes there is a telephone number at St.Thomas' that you can ring if you are 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 suddenly feel very, very lonely and start to wonder if you were a little too eager to "escape" from hospital. It's certainly something you need to be aware of if you do end up having an operation and not something that was ever discussed with the doctors or nurses.

Sunday, 24 October 2010

I needn't have worried about sleeping. Not a problem at all apart from having to get up at some point to attend to my stoma.

I weighed myself the previous night and I had lost around 5 kilos since going into hospital so it would be important to try and put it back on. Following the nutritionalist's advice I was embarking on a diet of crisps, crackers and doughnuts (and that's just between meals). I've also had to fit in 3 high nutrition drinks and one litre of re-hydration liquid - all provided free on the NHS.

In fact I really can't praise the NHS enough. We worked that an operation like the one I had had would cost £ 60,000 in America. All the ward staff were professional, friendly and caring. The food was always well cooked and served piping hot and there was always a good supply of hot drinks and snacks if you wanted them.

I spent Sunday much as I did Saturday ie. taking it easy and listening to the football on the radio. I was still eating well so getting the weight back on wouldn't be a problem.

...and it was our 30th Wedding Anniversary.

Monday, 25 October 2010

Another good night's sleep and looking forward to breakfast. After breakfast I decided to connect up my guitar and have a good blast - whilst my wife was taking the dogs for a walk. The only problem I encountered was my pouch unfortunately coincided with where my guitar sat. Would have to adapt my playing technique accordingly.

Received 2 follow up calls from St.Thomas's today (as promised) to check that I'm feeling OK and coping with my stoma. Sounds like I was unfortunate last week in that both the Enhanced Recovery co-ordinators were on holiday and that I wouldn't have had to do the chasing around on the Thursday myself. Also the fact that I was in Northumberland Ward (who specialise in upper body surgery) rather than Page Ward (who specialise in colorectal surgery) probably didn't help but my overall care was unaffected. I had guessed that I would need to be proactive to ensure that I got discharged by my own target date, ie last Saturday, and it all worked out fine.

The grass needed cutting

.... the grass needs a cut
Went for a walk round with the dogs in the afternoon - not too far to start with - then a bit more dozing on the sofa. I was surprised that I was not more tired.

Wednesday 27th October 2010

Would be useful if I was driving again but it would be at least another 4 weeks yet. The criteria is being able to do an effective emergency stop without feeling pain from the operation.

Our neighbour very kindly took me down to the doctor's in the morning to have a blood test to check the levels of salts and magnesium in my blood. These were the figures that were giving concern at St.Thomas's that time last week. Would have to wait a couple of days for the results. 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's looked fine so one less thing to worry about.

As I understand it there are three levels of care under the NHS :

Primary Care : the service provided by my GP
Secondary Care : the service provided by the consultants and specialists at my local hospital
Tertiary Care : the services provided by St.Thomas's as the surgery was too complex for my local hospital to cope with

I had now left Tertiary Care and was back in Primary Care, back in the hands of my GP. I made an appointment with him for later the following week to discuss how we go forward.

Likewise the stoma care nurse at St.Thomas's had now handed me over into the care of the one based at East Surrey Hospital. The new nurse gave me a ring to arrange to come and see me the next morning.

This afternoon I had a visit from one of my old school friends. He was my best man 30 years ago. It was nice to have a visitor. The rest of the evening was spent snacking and dozing. Not very exciting.

Thursday 28th October 2010

The local stoma nurse came round that morning. She wanted to make sure I was coping with the mechanics of having a stoma fitted and that I had all the supplies I needed for the next few weeks. She was very nice and immediately put me at ease. When you think about it, it's funny what you are prepared to talk about and do in the presence of a stranger when it's health related. Once she was happy that I was coping we had a general chat about diet and exercise.

She reiterated the advice to eat crisps, crackers and doughnuts but told me to cut down on the high nutrition drinks as I was taking in more fluids than she would recommend.

She explained why it was so important that I really did take it easy over the next few weeks and that I must not pick up any items over a kilo. The danger was that whilst my abdominal muscles weare so weak, having been cut through during the operation, I was at a great risk of a hernia. She picked up my guitar and said that really it was too heavy for me to lift. Looks like I'll 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 my bed so that I heal stretched out not hunched up. I will have to rethink my days and not feel guilty about lazing around, doing nothing.

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 2 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 bit I was dreading. It would inevitably happen but anything you can do to minimise it is worthwhile. I've written out the process in detail as it might help demystify just what being fitted with a pouch entails.

I found the secret of stress-free bag changing was to follow the same sequence each time. Before the surgery we had already been out and purchased a small pedal bin which I then used for holding all the items for disposal.

Get everything prepared before attempting to remove the pouch. My list was as follows :

Small bowl of warm water
Plastic waste bag - opened and at the ready
Cotton cloth wipes at the ready. The ones provided were quite large and unwieldy so I found it better to tears them it strips. Easier to handle and dispose of.
Adhesive removal spray
Skin protection wipe - foil packet opened
Sealing washer (if you are using one) already attached to backplate and moulded into shape around opening
New pouch (and a spare) - with backplate already 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 load of pouches cut too large). I would leave the pouch backplate on a handily placed radiator as the heat helped to make it flexible and mould to my abdomen better.

On winter mornings I made sure I had a torch with me just in case there was a power cut or a bulb blew as the last thing I wanted was to be mid-change and then have to do the rest in the dark.

Once these items are all ready it's time to empty the pouch and then carefully peel the backplate from the skin. Clean round with the wipes, remove any adhesive using the spray and finish off around the stoma with the skin protection wipe. I became quite proficient at this and was not even phased if the stoma started “woke up”. Lastly it's time to put the fresh pouch into place. ensuring it hangs close to the vertical, and press around the backplate to get a good seal with the skin. The whole process takes under 10 minutes.

(On one occasion, with a doctor and stoma nurse watching, I achieved my own personal record of under 5 minutes. The doctor was impressed and so was I!)

Saturday 30th October 2010

Another quiet day. When the dogs went for their walk in the afternoon I walked round the field with them. I've got the energy to walk round but my stoma stings, making walking uncomfortable. I would mention it to the nurse when she rang me on Monday. Decided not to drink the litre of re-hydration fluid today. Will have to see if it affects my digestive balance. Another question for the nurse.

My digestive system did appear to be stabilising well and so I  started reducing the Loperamide tablets that I've been taking since last Friday. My taste buds also seem to be back to normal. Had a trip down to my local surgery for a blood test in order to check that various readings are on the way to normalising.

Monday 1st November 2010

Spent another lazy day and didn't feel too guilty about sitting around reading Sherlock Holmes short stories. A letter arrived from my GP saying that one of my blood test results was slightly low and that I needed to make an appointment to discuss. Luckily I already had one booked for Thursday.

Went for a walk round the field with the dogs and in future would try to do this once or twice everyday. The autumn tints were starting to come through as you can see from the picture below. (The palisade fence and pergola were this summer's pre-op project)

Autumn Tints
Autumn Tints
Thursday 4th November 2010

Walked the dogs this morning. Should take another couple of windy days and we will have lost all the autumn colours.

Oak and Hornbeam
Oak and Hornbeam
I went to see my GP at 11:00am and asked him which of my blood tests results was causing concern. It's my haemoglobin level (red cell count) as it is just below 11 and should ideally be between 13.8 and 18.2 (according to Wikipedia). This may account for why I've been feeling tired recently. The doctor's advice was to eat iron rich foods such as steak and greens (except I'm not allowed greens) so it looks like steak every night from now on! I may end up having to have an iron infusion which will mean a trip down to the hospital. I would need another blood test in 2 weeks time to see if there was any improvement.

I asked him who would now decide on which medications I should, or should not, be taking. He replied that would take the general lead but for Crohn's specific medicines then it would be down to my specialist at East Surrey Hospital. I would need to make and appointment to see him.

I was still on the rehydration salts, Loperamide ( Imodium) and the Fortisip high energy drinks. He gave me a prescription for 180 bottles of Fortisip ie. 2 months supply at 3 per day. I'm pleased that I've got a pre-payment card because at retail price that is over £500. (At least I now know which are my favourite flavours - Banana, Chocolate and Toffee). I walked from the doctor's surgery down to the chemist's and felt quite fit. Decided to try and go shopping tomorrow for lots of iron rich items. I'd been given a few more suggestions - Guinness, water cress - would have to check the internet to look for other ones.

I rang up my consultant's secretary at East Surrey and left a message on her answerphone asking for an appointment in a couple of weeks time. A few minutes later she rang back and had booked a slot on 23rd November which is ideal as I should have the results of my next blood test by then.

Friday 5th November

I was looking forward to getting out of the house for a couple of hours and seeing how I would get on. Around 11:00 a friend came over to take us shopping. (I realised that I could be driving myself in a couple of weeks time - 6 weeks from the operation).

We don't usually go shopping on a Friday morning and Waitrose (you get a better class of assistant in there) was heaving. Ended up spending the most we've done in years - must be the steak and Guinness. We only just managed to fit all the shopping in the car. Got back home and didn't feel too bad just guilty at not being able to lift or carry any of the shopping bags.

Would be interesting to see how my digestive system, in it's current configuration, coped with Guinness.

With all the exercise in the morning I spent the afternoon resting and sitting in front of the computer. I've been watching various synthesiser modules on eBay, trying to decide which one to bid for.

Wednesday 10th November 2010

Had a really good night's sleep and didn't get up until 8:30am. The sun was shining and there was a clear blue sky. What a contrast from the previous day. Listening to the weather forecast and it sounded like this was to be the lull before the storm. Tomorrow was going to be bad again.

Decided I really must get some exercise so went for a walk round with the dogs before I had breakfast. Apart from the cold it was really pleasant and felt good walking. I was surprised that there are still leaves left on the trees.

The leaves are starting to fall
The leaves are starting to fall
Thought I'd start our car to make sure that the battery didn't need charging. Started first time. I haven't driven for four and a half weeks so decided to have a go and see how it felt. No problem. Will need to contact my insurance company later to find out exactly when I'm allowed back on the road.

Went back indoors but it looked so bright outside that I wrapped up well and went back out. I thought I'd see how it would feel to do some chores so I cut the back lawn and collected up all the fallen leaves (with mechanical help). I didn't appear to be suffering any side effects. It felt really good to be doing something useful rather than just sitting about reading or dozing.

Thursday 11th November 2010

The weather was worse than Monday. Torrential rain and gale force winds. I didn't venture out to walk the dogs but then the dogs didn't want to go far anyway. One refused to go out!

The process of learning to live with my stoma continued. I needed to know what's good and what's bad so cutting the grass yesterday was a good chance to see how I would react to sitting in a fairly cramped up position for an hour. Tonight's experiment would be food based. Dinner was chicken korma washed down with Guinness. Would be interesting to see if this still seemed like a good idea in the morning.

Friday 12 November 2010
- It had all been going so well - then 999

Friday morning - I got up early to get ready for another shopping trip. Took a while finding everything as we haven't been to that particular supermarket for many years. We got home just before lunchtime and I felt fine.

After lunch I took it easy and answered a few emails including one from one of my colleagues asking when I might be available for work again. My guess was a couple of weeks, once driving again but only doing half days to start off with. I rang my insurance company to ask when I would be able to start driving and they said that they would be happy to take my doctor's advice on that. So once I could do an emergency stop without feeling any pain I should be back on the road. I was going to aim at two weeks time which would be 6 weeks from the op and try and get myself down to my next hospital appointment.

It got to quarter past six when I noticed that I appeared to be losing blood. I went off to investigate and was losing quite a lot. My wife was already outside feeding the horses by then so I went and found her and told her that I had a problem and I needed to get to hospital quickly. Not to go into too many details (see end of chapter - not for squeamish) but I couldn't tell if I was bleeding internally or externally.

Knowing it was a Friday night and that Accident and Emergency was likely to be busy we decided to call 999 rather than get a lift down to the hospital. I rang our neighbour to warn her what was happening and get her to come and let the dogs out last thing and give the horses their late night haynets.

The ambulance turned up very quickly. Once I was onboard they went through a series of tests for blood pressure etc and we were off. No siren or blue lights. It's not a very good ride in the back of an ambulance as they sway a lot and the roads round here are rather bendy.

We arrived at East Surrey Accident and Emergency just gone 7:15. One of the crew said "we're taking you into the Rapid Assessment Unit but don't be fooled by the title". Luckily he was wrong and within 10 minutes I was laying on a bed having more tests and having a cannula inserted into my arm. I was then wheeled to the MAU (Medical Assessment Unit) but they were full so we had to wait in the corridor. This was probably the worst bit because you can't see what progress they are making 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 had to explain my medical history and what the current problem was. I got the distinct feeling that he wasn't keen to explore my stoma himself and didn't even suggest that we remove the bag to get a better look at it. He went off to ring one of the surgeons to see what should be done. At this point a very friendly porter came to take me down to the x-ray department where they did chest and abdominal images. He remarked how busy Accident and Emergency was and that it hadn't been this bad since July. Surprisingly enough Friday and Saturday are not usually the busiest nights.

I was then wheeled back to the MAU and it looked like I had missed my place in the queue but they explained I would 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! I needn't have worried as he hit the artery first time and I am very used to having needles, of varying lengths, stuck in me.

The sister wheeled me down to the SAU and I was told that the doctor knew I was there and would see me shortly. It got to about 11:00 and I'd still not seen anybody so my wife went to find out what was going on. The doctor was seeing another patient but would be with me shortly. A few minutes later a very nice doctor came to my bed and apologised that she would need to ask me all the questions again. Luckily I had had the presence of mind to bring my discharge letter from St.Thomas' with me. This explains exactly what they did to me but we couldn't understand it as it was in long medical terms. This doctor gave us a translation.

She then examined my stoma, inside and out, and came to the conclusion that the bleeding was external (phew!) 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 whilst my blood count is 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.

A short wait whilst the nurse removed the cannula from my arm and then I could get dressed again. I rang my sister who very kindly came out and picked us up and 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.


To recap: When I had my operation the surgeon decided that the lower part of my digestive system needed a rest to allow the surgery to heal. When he carried out the bowel resection/ileostomy (removal of a section of bowel/formation of a stoma) he left the two ends poking out through my abdominal wall. The pouch was fitted over these ends and collected what came out. The stoma tissue itself is tough and can cope with the digestive acid present in the output.

The pouch (bag) has a flexible plastic adhesive backplate and a pre-formed opening cut in it. This opening needs to be trimmed to fit exactly around the stoma. As the stoma gets used to being external to the body it shrinks a bit and so the opening in the backplate needs to be adjusted accordingly. If there is a gap around it then the digestive acid can come in contact with normal skin and this stings and becomes raw. This is what had happened but in my case and the skin had become so sore that it started bleeding. It was surprising just how much blood that had collected in the pouch.

Saturday 13th November 2010

Went for a really quiet day after the "excitement" of last night. Didn't even get out of my pyjamas and dressing gown all day. Fingers crossed that I wouldn't have any problems and end up in Accident and Emergency again.
Well I say really quiet, that was apart from some fireworks fairly close by. Luckily the dogs and horses took no notice. Let's hope that's the last of the fireworks for this year.

Sunday 14th November 2010

Couldn't sit around all day today so up early to give the horses their breakfast and give my wife a chance of a lie in. Needed to keep piling on the calories so bacon and fried bread are becoming the norm along with a bottle of high energy Fortisip.

We should have taken a trip down to Bournemouth for a party to celebrate my mother-in-law's 90th birthday but I really wasn't up to the 200 mile round trip, and my wife reckons I shouldn't be left alone yet, so we spent the day at home.

I needed to get a good night's sleep.

Monday 15th November 2010

Slept really well, then got up early again to feed the horses. The temperature must have really dropped overnight as the gate and the padlock had frozen solid. Had breakfast and then rang the stoma nurse to tell her what happened Friday night and to ask her advice on how to proceed. I'm a bit wary of putting on a new bag in case it sets off the bleeding again. She told me to bite the bullet and have a go and to let her know how I got on. I was amazed that it worked out fine.

Around 10:00 we had a visit from my sister-in-law and her husband who had been down to the 90th birthday party the day before. Told them all about my recent experiences and continued the downward spiral into becoming an "operation bore", as my wife pointed out. Hopefully this will improve when I get out more or maybe I'll have greater opportunities.

Another phone call to make - when I saw the doctor in the SAU on Friday night she said that I should ring St.Thomas' and explain what happened as they may want my follow-up appointment with the surgeon, currently in early January, to be brought forward. Rang the Colorectal Enhanced Recovery Nurse up in London and went through what had happened. She said that I was right to ring them and that they did want to know about any problems I was encountering.

Just after lunch I had a call from East Surrey Hospital telling me that an appointment had been arranged for this Thursday at 9:00am to meet with the gastro-enterologist. This is in addition to my other appointment on Tuesday week. I'll be interested whether this has been arranged as a direct result of my trip to Accident and Emergency or my call to St.Thomas'. The specialist I'm going to see used to work up at St.Thomas' with the surgeon who carried out my operation so I suspect the latter.

I really need to be independent again so before taking the dogs for a walk round the field I thought I'd try driving the car again, this time with my seatbelt on, and do a few emergency stops. Seemed fine, certainly no pain from the seatbelt. The only difficulty is turning to look over my shoulder when reversing but that's what the mirrors are for. I was going to start driving next Monday but have decided to start a few days sooner so my first trip will be down to the doctor's for a blood test this Wednesday. If I'm OK with that then I should be able to get to the hospital on the following day.

Wednesday 17th November 2010

First time out driving for a few weeks. Went down to the doctor's for a blood test. Felt fine so decided to drive to the hospital tomorrow.

New supplies of pouches arrived without the holes in the backing plates precut as this would give me the opportunity to cut them to suit my current (shrinking) anatomy. Spent a while thinking about how to make a template to work from. I know roughly how much smaller than my existing ones I needed so that would be a good starting point.

Thursday 18th November 2010

A very early start today as I needed to be at East Surrey Hospital for 9:00am but wanted to try out my new template and then use it to modify a pouch. All worked fine and the new backplate is a much better fit.

Arrived at the hospital nice and early. There was plenty of room in the car park. Early morning appointments have their advantages. Had an appointment to see the lead gastro-enterologist who I had seen many months previously when we were deciding where to go for surgery. Sounds like this current appointment was planned a couple of weeks ago as the follow up to my operation, not my recent visit to Accident and Emergency.

Interesting meeting. It sounded like, so far, I'd made a pretty good recovery and that he was surprised I only spent 2 weeks in hospital. Crohn's patients, that undergo complicated surgery, have a tendency to end up suffering from various complications and spending longer than usual in hospital. Fingers crossed that last Friday was my "complication". I pointed out that under the Enhanced Recovery Scheme the target was set for me to be discharged from St.Thomas' in under one week. He replied that the Enhanced Recovery targets were based on cancer surgery which is generally far more simple than Crohn's surgery.

He now wanted my care to now pass back to East Surrey and for me to be looked after jointly between himself and a surgeon. I've therefore got appointment for their joint clinic next Monday in lieu of the one already planned for next Tuesday. Before I left he asked me to have yet another blood test. So I made my way down to the Phlebotomy Dept. where you always wait ages for your turn. I don't know why it takes so long because the actual process of taking the sample is pretty quick.

Got back home about 11:30, and that was the longest I had been out and about since I came out of St.Thomas'. I don't appear to have suffered any ill effects so set about having a good, unhealthy lunch.

The next big hurdle will be getting back into work, which is partly physical but more a mental challenge. I need to be confident that I can cope with my whoopee cushion for an extended period away from the comfort of home. Will work on this over the next few days.

Friday 19th November 2010

We went shopping under our own steam and managed fine. It was going to be a funny Christmas as I was not supposed to eat anything with dried fruit or nuts in, ruling out mince pies, Christmas pudding and rich Christmas cake.

When I got home there was a letter from my GP saying that my blood test showed that I was still anaemic. There was a prescription attached for iron tablets. Would discuss with my consultant on Monday to make sure they won't interact with the other tablets I'm on.

Saturday 20th November 2010

Felt uncomfortable today. My stoma was stinging. Not sure what's causing the problem. I'm wondering if I've cut my template too small and it's rubbing up against raw skin. Took some pain killers which seemed to help. Will ring the stoma nurse on Monday to see if I can go and see her as I need to find out what is causing the pain.

Monday 22nd November 2010

I was still concerned that the area around my stoma was very sensitive and looked bruised. I rang the stoma nurse to ask if it was possible to see her that afternoon as I was already going into East Surrey Hospital for another appointment. She said to get someone to bleep her after my appointment and she would come and have a look. At least my eating campaign has been working. I'm only a kilo less than my pre-hospital weight.

There was no actual pain that morning and the sun was shining so further chores to carry out. There was a lot of leaf sweeping that needed doing so would see how far I get. Managed to sweep the back lawn and one of the paddocks. Started on another paddock but the leaves kept blocking up the collector and it was a struggle to unblock each time it so didn't complete the task.

Went to East Surrey Hospital for that afternoon's appointment. I had been hoping to meet the surgeon but he was not there but I did meet the IBD Nurse and we went though my medication. She asked me to join their Patient Panel.

The consultant then joined us and asked me to come in next Monday when the surgeon would be available. What I hadn't realised was that he had carried out my operation in conjunction with the St.Thomas' surgeon. Would be interesting finding out exactly what they did, from the horse's mouth,  and see if he thought it was "enjoyable".

The consultant explained how they would determine what dose of immuno-suppresant I needed to take. It would be down to the results of my blood tests as there are certain markers which show how active the Crohn's disease is. (Although I've had an operation to remove restrictions and generally repair my bowels I still have Crohn's disease and the aim would be to manage it so that I don't have to have any further operations in years to come). I've therefore arranged another blood test for this Friday. The results should be available in time for Monday afternoon.

They bleeped the stoma nurse and, once she had found which room we were in, she had a good look at the area around my stoma.  It looked like I had an abscess just below it. The IBD nurse and my consultant were called to have a look as well and all agreed. I was put on a 2 week course of Co-amoxiclav (antibiotics) which would hopefully clear it up. I had strict instructions to ring the stoma nurse on Friday to let her know if there has been any improvement.

The abscess would explain the incident two Friday's ago where I was losing blood. It suggests that there was a build up just below my stoma, which burst, hence my trip to Accident and Emergency.

I took the first of the antibiotics with my dinner but only managed to get halfway through before I felt quite rough. Didn't finish dinner and went to bed. Didn't know if it's reaction to the new tablets or something I had eaten. Hopefully would feel better after a good night's sleep.

Thursday 25th November 2010

I really must compliment our local doctors' surgery for their efficiency. I e-mailed them that morning at 8:10 am for a repeat prescription, by 8:25 am there was a reply saying they had actioned my request and at 4:00 pm the tablets were delivered to my door. Must remember to thank them when I went for the blood test the next morning.

When I opened up the package there was a copy of my prescription form listing all the medicines and accessories which I can order (see below). Thank heavens for my prescription pre-payment card as it certainly works out much cheaper than paying £ 7.20 for each item. We were wondering how much this little lot would cost if we lived in the USA. (Subsequently I found out that when you have a stoma you get free prescriptions anyway)

Crohn's Disease - all my current meds
All my current meds
Friday 26th November 2010

Yet another trip down to the doctor's for a blood test so that the results would be ready for my hospital appointment on Monday.

Went into Redhill in the afternoon to replenish food supplies. It was the first time I'd been shopping on my own for a few weeks so had to be careful lifting bags into the back of the car.

Monday 29th November 2010

My last planned hospital visit for a while. I met with one of the surgeons who carried out my operation back in October. He remarked how well I looked considering what they had done to me. He now works at East Surrey Hospital but went up to St.Thomas' on the day to take part in what he described as a "classic" operation. He said it was one of the most complex they had ever carried out. My innards were in a really bad way.

He had a trainee doctor in with him for his clinic and was showing her my pre-operative CT scan. He described it as looking like an octopus. It sounds like my intestines had, in places attached themselves to other parts of my body such as my back muscles. I dread to think what would have happened if the surgery hadn't been carried out when it was.

I asked the him what could prevent my reversal operation being carried out in the New Year and what would be involved. He replied that as long as my surgeon at St.Thomas' was happy that my body could cope then it should go ahead as planned.

The procedure should be a fairly simple one and involved "cleaning up" the ends of the stomas, joining them together and putting them back inside. It usually takes around half an hour to carry out and involves 3 - 5 days in hospital and then 2 weeks convalescence. Just occasionally it might be necessary to re-open the original operation scar but this would be unusual. I would find out just after Christmas when the operation would be planned for.

He called up the results of last Friday's blood test. It shows that my red blood count has risen from below 10 up to 10.4, so at least it's going in the right direction. Looks like the iron tablets are starting to work. My sodium and magnesium levels are OK so I really don't need to drink any more of the re-hydration salts. Some of the other readings are a bit low but I didn't quite understand the signifcance of these. It sounds like they are markers that can be used to decide how active the Crohn's disease. (Unfortunately I will always suffer from it, unless a miracle cure is found, the operation was just to put right some of the problems caused by the Crohn's).

He then asked to have a look at my stoma so he could check if everything was OK following the loss of blood incident. I quickly removed my pouch whilst he watched along with the trainee doctor and a nurse. It really is amazing what you are prepared to do in the name of medicine. He was happy with what he saw so they then watched as I fitted a new pouch. I even impressed myself with how well organised I was and how quick I fitted it. I wonder if there is a world record for this type of thing? He said that he wouldn't need to see me again so is handing me back to the care of my specialist.

Just in case you are wondering what a pouch looks like - here's a picture. There are lots of different designs available but this one works for me. The square plate is adhesive and the trick is to cut the hole in it so it just fits over the stoma without a gap around it.

Crohn's Disease - a stoma pouch with velcro fastening
A whoopee cushion or pouch or bag
Tuesday 30th November 2010

Having watched the rest of the country struggling with snow, ours finally arrived overnight. Only about an inch but it continued to fall.

The first snow arrived in Surrey
First snow
It had been threatening the south-east for a few days now and that set people off panic buying at the local Tesco and Sainsburys stores. We genuinely needed to go food shopping today so decided to get out as soon as possible in case a) the weather got worse b) panic buying started again. Needn't have worried as our local supermarket wasn't too busy and the shelves were well stocked.

When we got home there was a letter from my specialist, as a follow up to my appointment a week ago, stating that my previous blood tests results confirmed that I am suffering from leukopenia and thrombocytopenia. I know what the second one means but not the first one so a quick search on Wikipedia was in order :

Leukopenia is a decrease in the number of white blood cells

Thrombocytopenia is the presence of relatively few white platelets in blood

He thinks that it is due to the high dose of Azathioprine (immuno-suppressant) that I was taking in the lead up to my op. I had now stopped taking the tablets completely whilst they monitored to see if my blood test results would improve. Apparently my specialist is a world expert on the use of this drug so I should be in good hands.

It was still snowing but not very hard, we probably had one inch maximum. I spoke to a friend who lived at the top of a hill, about 10 miles away, and she couldn't get out of her road as they' hadt 8" of snow. Sounded like we had escaped lightly so far.

Wednesday - 1st December 2010

Just as I was thinking we had escaped any bad snow but we finally got what was forecast. Nothing like as bad as Scotland or up North but enough to disrupt things. A friend rang up and told me not to venture out onto the roads as they were treacherous. Looked like another day to spend in the warm. My plan to take a trip over to Leatherhead (about 20 miles away) would need to be shelved for a few days.

The snow was getting thicker

The snow is getting thicker....
Time to try some outdoor chores. When I saw the surgeon on Monday he said I could start to get back to normal activities so I helped with the mucking out, haynets and feeds. I found as long as I took it fairly slowly I could cope quite well.

The horses are very resourceful. We didn't want them staying in their stables all day so we put them out in one of the paddocks with some hay. Once they had finished that they simply stuck their noses through the snow and ate grass.

Highland ponies are resourceful
Highland Ponies are resourceful

Thursday - 2nd December

The forecasters were right. It looked like we had had another 200mm of snow. I can't remember snow this bad in the10 years we had lived here. The dogs were loving it, especially the little one. Would be interesting to see if the horses could still get to the grass with all the extra snow.

Yes they could. See below. You can see how much more snow had fallen.

Highland ponies are resourceful and the snow was getting thicker
Highland Ponies are resourceful
Just looking at the 5 day forecast it was due to warm up at the weekend but I wasn't sure how accurate it was because it showed sun for today but all we had got so far was more snow.

There was a ring on the doorbell and standing at the front door was the delivery driver from Fittleworth, the company that supplies stoma bags and accessories. I had placed an order on Tuesday and was told that they would deliver on Thursday. Given the appalling weather conditions and the message from the Surrey Police telling road users to only make emergency journeys I assumed I wouldn't get my delivery until after the weekend. I thanked him profusely and e-mailed Fittleworth to compliment them on their service.

Any thoughts of returning to work before Christmas would have to be shelved. I couldn't risk getting stuck on a train with an uncontrollable stoma!