Crohn's Disease - Chapter 4 - October 2010 - Ileostomy and recovery


Monday 11th October 2010 - THE DAY OF THE OP

(Didn't get a chance to update the blog in real time on the night (11th) as my iPad had been locked away in the ward safe during my op and by the time I got back up from Recovery the night staff had come on shift and didn't know the combination! So this section was written the following day).

The operation time slipped from the 11:30am originally planned but eventually I was collected from the 12th floor and arrived down in the anaesthesia room at 12:30pm. The theatre team were ready for me and started the preparation procedures. They seemed to be a very happy crew, laughing and joking and that helped put me at my ease.

The anaesthetist I had met earlier then appeared. He greeted me with a broad smile and said he was ready to fit the epidural. Once that was done he said I’m just going to give you a mild sedative to relax you. I just drifted off into oblivion. Never trust an anaesthetist.

That's the last I remember until waking up at six o'clock in Recovery. It was freezing. I was feeling no pain as the epidural was doing its job well but I was freezing. Shivering. Violently shivering. The house doctor, that I had seen in my room that morning, came up to see how I was. His first word was "Sorry..." so I knew what was coming. He told me it was a four and a half hour operation and that because of what they found when they opened me up it was necessary to have a stoma in order to give my large intestine a chance to recover. He lifted the blankets so I could see what they had done. It didn’t really come as a shock as I always knew it was a possibility and was mentally prepared for it. I can imagine what it would have felt like if I hadn't been forewarned.

By late afternoon my wife was starting to get concerned. It must be a lot worse for those sitting at home waiting for news than the patient who is comfortably numb. She hadn’t had any news on how the operation went so she rang the Ward. They told here that I hadn’t arrived yet but would call when they knew what was happening. Just gone six thirty a doctor rang to tell her that I was OK. It had been complex surgery and I was still in Recovery.

The Team in Recovery were concerned about my readings, especially the temperature. At one point I had a "bear hugger" put round me which is basically a hollow blanket into which hot air is blown. Now I know what a formula one tyre goes through on the grid. I was offered a warm drink just a couple of hours after the operation. No more “nil by mouth”. It wasn’t until I was finally wrapped up in a large, microwaveable blanket that my temperature began to return to normal and I could be taken up to the ward. By now it was around eight o’clock.

Another huge change over the past few years is being able to use a mobile phone in hospital. I suppose it was inevitable as people would use them whatever. I asked the nurse if I could get my phone so I could ring my wife. As I explained earlier, they had locked my valuables in the ward safe and the night shift didn’t know the combination. Very frustrating.

I was taken to Northumberland Ward on the 11th floor, where I spent the rest of my stay. I had been expecting to be put in Page Ward, as that was the ward specialising in colorectal surgery. Unfortunately there were no beds available so I was put into the sister ward next door where they specialised in upper GI conditions.

I felt really good and so could have easily written up my blog if I'd have had my iPad. (I imagine this was a post op high induced by the drugs). I finally managed to get hold of it this morning but the sister not happy about me keeping it there so it was taken home that night and brought up again on Thursday.

The house doctor came to visit me again and asked if there was anything I needed. I asked him if he could ring my wife and tell her I was safely up in the Ward. He had a number of other things to take care of first but eventually she got a call at eleven thirty.

Tuesday 12th October 2010 - FIRST DAY AFTER THE OP

Today I felt a lot drowsier. Twice the nurse tried getting me out of bed and each time I nearly fainted so she left it a while. Part of the Enhanced Recovery regime is to get the patient out of their bed on the day after their operation. It was the physiotherapist that finally managed it. So I was now sitting in a chair next to the bed but every so often came over nauseous and tired.

First day after the op. Another stunning view
I must have been given breakfast and lunch and because my system was empty I ate what I could manage. I must also have been shown how to empty the pouch or more likely one of the nurses did it for me. It’s not difficult to do, you just need confidence. The pouch was the type with an opening along the lower edge, sealed by folding it over three times and fastened with velcro.

After an operation of the type I had undergone the surgical team are interested in inputs and outputs. I could imagine (the late) Brian Hanrahan reporting “I’ve counted it all in, and I’ve seen it all come out”. To this end I had to record all my liquid inputs and a nurse then had to measure what came out of the pouch and the bladder. Not very pleasant for donor or measurer. You have to grit your teeth and get on with it. It’s not until a healthy balance of outputs has been achieved that you will be considered for discharge.

I decided I needed to stop writing as I wanted to be alert for my visitors. I was planning to do a further update on Thursday when my iPad was brought back in.

Wednesday to Sunday, 17th October 2010 - BACK TO BLOGGING.....

I had to take a break from blogging as I had been feeling rough since Wednesday evening and really couldn't face doing anything except try and sleep. The nurse was right! It was not entirely unexpected as we were warned that I would feel low on the second day after the operation

Wednesday 13th October 2010

The Stoma Nurse came round today to show me how to change my pouch. This was the first chance to see my stoma out in the open and touch it, ie with the pouch removed. (You won't find any pictures of it on this blog. I decided that some things are best kept private but if you are really curious there are plenty of photos out there on the web. Thinking about it again I wish I had at least taken one photo for posterity).

I'd seen pictures of stomas in the booklet I was given several weeks ago but it didn't really prepare me for having my own living, moving little companion. It's difficult to describe exactly what it reminded me of but it was darker in colour than I expected and it suddenly hit me how weird it was to have parts of my intestines sticking outside the body and that I could touch. You just have to suspend disbelief and accept it. You'd think it would hurt when touched but not at all. I had imagined that the gut was rich in nerve endings and these would object to being "on the outside". Not a bit of it. It was completely dead to the touch.

The stoma, which is from the Greek for mouth, is actually two stomas - the bit from small intestine, which is the most prominent and active; the opening leading to large intestine which just sits there waiting to be reconnected.

The nurse gave me my “stoma survival kit” and went through the contents - fresh pouches, a pair of curved scissors to trim the opening in the backplate to match the shape/size of your stoma, wipes, adhesive removal wipes, a small bowel for warm water, sealing rings and a mirror (so you can see under the stoma if you need to).

The bits that were missing from the kit were the razor and shaving foam. (Hopefully it is only males that need this equipment). To make sure you get a good adhesion of the pouch, and to prevent it hurting too much when removing it, the area around it needs to be kept well shaved. I've always used an electric razor so it would be a double learning experience to smother the area in shaving foam and then scrape away with a sharp blade. I was wary of getting foam on the stoma itself as it was bound to sting but when I finally got to carry out the procedure I was surprised how resilient it was. My other concern was catching the stoma with the razor and making it bleed. Luckily that never happened.

The nurse recommended fitting a new pouch every 2 days so I had until Friday before I would have to have a go. I was filled with some trepidation but there were plenty of other things to think about so I put it to the back of mind. She told me that at 54 years old I was one of her older patients. Most are in their 20's and 30's. With high profile personalities such as Kylie Minogue suffering from breast cancer or Lance Armstrong (not disgraced at this time) with testicular cancer, these conditions were starting to get discussed more widely but no one talked about stomas. I certainly had no idea of what was involved or the technology used.

We could do with someone famous to admit they have one. I decided from the start that I would be completely open as to what I'd been fitted with so that friends and family would understand the processes and the strange, involuntary noises. One of the reasons for this blog was to demystify what happens and take away the concerns of patients who might be about to undergo a similar experience. Stomas are not something that gets much discussion in "polite society".

At some point during the morning I must have turned in my bed and dislodged the epidural. It was due to come out on the following day anyway so it was decided not to replace it, with the inherent risks involved, and to see how I got on with just paracetamol - the painkiller of choice. As a back-up I would be allowed morphine on demand.

Late afternoon I had a visit from my brother-in-law. He reported back to the family how well I appeared to be getting on, apart from the hiccups, which I had been suffering intermittently since Monday.

Wednesday evening things took a turn for the worse and I couldn't face eating or drinking anything. This is quite a common reaction of the body when it's undergone the trauma of the gut being manipulated during surgery and I imagine there was a lot of “handling” given four and a half hours on the table. I accepted that I would feel rough for a short time and tried to get some sleep.

One of the surgeons came round on his evening visit to check up on my progress and asked if I had been "bled" today by which he meant "have you had a blood test?" I replied that I thought that was something they did to animals in the slaughterhouse to which he responded "well all patients are bits of meat". Nice to be able to have a joke with the professionals.

Thursday 14th October 2010

There was actually an upside of the epidural coming out earlier than planned. It meant that I could have my first shower since before the operation. I still had a cannula in one arm so it wasn't completely straight forward but having a one handed shower (no that's not a euphemism) is a skill you quickly learn. The position of the cannula dictates how easy or difficult it is to manage. The main concern is that you will saturate your dressings but they can easily be changed. The feeling after that first shower really lifts the spirits. I still use the same brand of gel nowadays and each time I catch its perfume it takes me back to that hospital shower.

Even though I enjoyed the shower my digestive system continued to feel rough with no appetite. My wife and sister came in to visit me and having had reports of how well I looked the previous day were expecting me to be quite bright. Unfortunately I was feeling worse and they went away very despondent.

The main surgeon came round that evening and I explained how bad I felt and that the hiccups had become interminable. He said that this was the normal reaction of the body and it would just be a matter of time before my digestive system kicked back into life and I would feel ravenous. He said that if I wasn't eating by Monday then I'd have to go onto intravenous feeding. It actually put my mind at rest that the top man thought this was an expected reaction and that I wasn't out of the ordinary. I just wish someone had told me that yesterday. If you haven’t suffered from bad nausea you cannot imagine how bad it is.

Friday 15th October 2010

Today it was my turn to change the pouch. Not looking forward to it and I realised why. With a stoma you have no control when it decides to “wake up and perform”. The thought of that happening just at the point where you’ve removed the old pouch and you haven’t managed to attach the new one was my concern. Mid-morning my usual stoma nurse appeared, pulled the curtains around the bed and we started. The key thing is to get everything ready before you start.

She showed me how to cut the opening in the stoma backplate, got me a bowl of warm water and had the wipes ready. I gingerly removed the old pouch and put it in a disposal bag. I then wiped around the area with the adhesive removal wipe and peeled the protection sheet off of the backplate to expose the adhesive. I was just getting ready to position the pouch when the stoma “performed”. It really wasn’t that bad and after a quick wipe round I was ready to apply the sealing washer around the stoma and then position the new pouch, making sure it was hanging directly downwards. I gently pressed it into position and it was done. A lot easier than I thought. The next challenge will be doing it solo.

Generally I was still feeling very rough but brightened up when a friend of the family made a visit. I hadn't realised that she had had to cope with stoma pouches with both her parents and was able to give me some encouraging words on dealing with them. Looks like I'll have to have one for between 4 and 6 months and will need a second visit to St.Thomas' to connect all my tubes back up again.

That night the house doctor said they were concerned that I was starting to dehydrate. He decided to stick a cannula back into my arm and connected up a drip.

A couple of things to mention here :

Firstly, because both ends of the gut poke through the opening in the bag it is possible for "matter" to make its way from the active part into the disconnected part. This can form itself into a small object, that looks something like a sultana, and appear from out of the lower opening. It's nothing to worry about but slightly disconcerting the first time it happens.

Secondly, it's not possible to sleep lying on your front when you have a stoma (for obvious reasons) and even sleeping on your side you have to be careful so I ended up only sleeping on my back. That makes the stoma the highest point of your digestive system. Any "gas" that might be present in your gut quickly makes its way into the pouch and inflates it like a balloon. It's a tribute to modern adhesives that I never had a leak even though the bag was under extreme pressure. I was half expecting it to detach itself and fly off around the Ward.

Saturday 16th October 2010

Still feeling rough, in fact probably the worst day but at least the hiccups had gone. I was able to have the tube disconnected so I could have a proper shower and then get into pyjamas rather than a medical gown. That did make me feel quite a bit better.

My wife and one of our carriage driving friends came up to visit in the afternoon and thought I looked OK, especially after the way I had been on Thursday. We spent the visit looking at pictures my friend had taken on his recent safari in Africa. Looked amazing.

Didn't see any doctors as it was a Saturday but really started to feel even worse. You get to the point of thinking things will never improve. I couldn't get to sleep so sat in my bedside chair overlooking Westminster Bridge.

View from my bed - County Hall and the Millennium Wheel
At least that takes your mind off of things for a bit. At one point it sounded like a lot of powerful motorbikes were passing by but when I looked out of the window it turned out they were groups of Japanese performance cars. They must have been on some sort of cruise. I watched them pass over the Bridge and then turn right down the Embankment then disappear. About ten minutes later they would appear again.

I hadn't realised just how much worse nausea could make me feel. I know why the window on the Ward are fixed shut. I was feeling so bad that I would happily have jumped. I'm not joking. It really made me feel that desperate.

As I still couldn't get to sleep I asked for some morphine in a vain attempt to knock myself out for a couple of hours at least. I was on a "pain killer on demand regime" where I decided if I needed additional medication. I think the limit was one tablet every 4 hours. It seemed to do the trick and I fell off to sleep for a while. When I woke up I had started to feel slightly different, as if my system was slowly kicking back into action.

Sunday 17th October 2010

Wow! The world looks a lot brighter today. I managed some breakfast and sat in my chair, sipping a high energy drink (Fortisip), watching the boats go up and down the Thames. I was really hoping that it wasn’t just a temporary respite so I stopped writing to try and concentrate on keeping the improvement going.

Didn't feel quite so well around midday. I suppose my whole system was taking a while to get back to normal. Still managed some lunch but not much. When my sister and her husband came to visit later in the afternoon I was again feeling rough so their visit was a little curtailed.

Around five-ish I started to feel better again and suddenly felt I was on the way to recovery. I went to bed knowing that I would get a good night's sleep for the first time, and without the morphine, which I didn't really like taking. When I was first given some 30 years ago (see “35 Years Ago - when it began”) the hallucinations were quite pleasurable and spaced out, now they were more feverish, worrying and repetitive. I assume that that is the reaction to accumulating another 30 years of "life experiences".

Monday 18th October 2010 - GOING HOME...OR NOT QUITE YET

Woke up actually looking forward to my breakfast and the feeling continued through until lunchtime. Saw one of the surgeons who operated on me and we assessed that I should be ready to go home on Wednesday. However after lunch I saw the stoma nurse who was concerned that my digestive system is still doing overtime and that she wouldn't want me sent home too soon. The balance of outputs had not normalised - too much stoma, not enough bladder! Makes me think it will be more like Thursday or Friday rather than Wednesday. Time will tell.

As a consequence of this imbalance the doctors and nurses became even more interested in measuring inputs and outputs. Inputs - no problem - just write down every time you eat or drink something together with the quantities. Outputs - not so pleasant! How can I put this delicately? Every time an "output" happens you have to save it in a bottle or bowl and leave it in the loo for some unlucky nurse to quantify and then dispose of. Really not very pleasant but I suppose it has to be done and you do get into a routine.

One of my work colleagues came to visit before dinner. Nice to see him and catch up with what's been happening since I had been away from the office. His visit was much appreciated.

Cumberland sausages for dinner! They tasted really good. The only problem with eating is that is starts up all the digestive processes again. It's currently like living with my own personal whoopee cushion.

I was finding the blogging quite therapeutic but it had just gone eleven at night so I thought I’d better try and get some sleep. Tomorrow the decision on when I could go home would be made, so fingers firmly crossed.

Tuesday, 19th October 2010 - BY THE WEEKEND

Another lovely sunny morning and the Thames coming to life. The Millennium Wheel had started spinning and cyclists were flooding over Westminster Bridge displaying their usual disregard for other road users and pedestrians. It got me thinking - does cycling in London make you inconsiderate or do you have to be that way inclined to take up cycling in the first place? (Now I'm sounding like Ed Reardon - the Radio 4 curmudgeon)

Cornflakes, toast and marmalade for breakfast this morning and they tasted good. Still struggling to manage my whoopee cushion, as I’ve named my pouch, but I need to get it under control in this environment so that I can manage OK when I get home.

My surgeon swept into the room with an entourage of 10 or so junior doctors. "Good morning young man" he said to which my immediate thought was "Christ! If his eyesight's that bad I hope he cut the right bits out."

He reviewed my progress and wanted to get my digestive system back into balance. I think we all wanted that. He thought I mght have been suffering from a part blockage of my stomach for over a year. That would account for why I still looked incredibly bloated despite losing 10kg. The upshot of these deliberations was that I needed to go onto re-hydration fluids to try and redress the current imbalance. They had to be got up from the pharmacy so were expected later today. He said "we're not sending you home until we've got everything working correctly. Should be Thursday or Friday".

Let's assume Friday. I then drunk my first glass of Oral Re-hydration Salts. Absolutely DISGUSTING and there's another 800ml to go. It was sitting there in a jug laughing at me.

What was great - I was actually looking forward to my meals. Not sure about some of the menu choices - lentils, curry or a Mexican sandwich. Best to avoid them. I have to say that the food, whilst not being cordon bleu, is very palatable and always served hot. A lot of it is a bit stodgy but that is exactly what is required for the patients recovering from the type of operations being carried out in this unit. The meals are dished up in the Ward kitchen, not delivered to the Ward already plated and dried up.

Had a visit from my wife and sister that afternoon. They could see how much brighter I was than when they last saw me. It was good to have a moan together about the selfishness of fellow train travelers and cyclists. Yes, they're got more stick.

We went through my holdall and decided just which items I still required prior to discharge. Tomorrow's task would be trying on outdoor clothes for the first time and seeing how they interact with the whoopee cushion.

I was trying to describe where I am in my "journey" but I really hate that cliche so let’s just call it the five stages to having an operation.

STAGE 1 - ANTICIPATION which could well then turn into TREPIDATION. I didn't get to the trepidation stage as I was determined to treat this whole process as an experience not something to be scared of. Blogging has certainly helped as well. I think the fact we had plenty of time to plan ahead greatly helped as did the ability to do research on the internet into the dark world of stomas.

I've known for over two years that surgery was inevitable but asked for it to be delayed as long as possible. Having moved from employment to working for myself it was vital that we had sufficient funds built up so as not to have financial worries as another burden. I have to compliment the Clients that I worked for. They were both brilliant throughout, accepting that some days I was simply not up to traveling into work or unable to manage working a full week. The strange thing was that as the operation grew closer my health seemed to be getting better and I actually managed a couple of full weeks work.

Stage 1 ends with the admission process, usually the day before the op and then the visits from the various doctors and nurses preparing you for theatre. The last bit you’ll probably remember is the anaesthetist saying " I'm just going to give you a light sedative".

STAGE 2 - OPERATION. Enough said

STAGE 3 - EXHILARATION (may not be the right "ion" but it's the best I can come up with at present. After the operation you are stuffed so full with anaesthetic and painkillers that you are on a high for at least a couple of days.

STAGE 4 - REALISATION maybe DEPRESSION. The powerful painkilling drugs start to wear off and you really do know your body has been through the wars. Some people say Day 2 is worse, some Day 3 but whichever day it is, if you are prepared, then you can live with it. For me I think it was Days 3 to 5. I didn't realise how low you could feel with nausea and hiccups.

STAGE 5 - FRUSTRATION. Once you know you're on the mend the mood changes to one of frustration as you can't wait to get home. I had entered this phase and it explains the very long blog - I'll buy anyone a pint who has managed to make it this far through. What really helps up at St.Thomas' is the location. If you're bored just look out of the window. (I had just watched a plain clothed police car thread it way through the evening rush hour with its hidden blue lights flashing away).

End of marathon blog and then I got given another litre of re-hydration salts to drink. Took one sip - still as disgusting. Added some fruit juice and took another sip - slightly less disgusting but still pretty awful, only another 980ml to go.

Where's dinner ?

Drinking the rest of the re-hydration salts was really hard. I was told I needed to get it all down before going to sleep. The last gulp was at midnight but at least it kept me awake to see Later with Jools Holland and catch Heaven 17 doing "Temptation". Brilliant! Must see their other numbers on Friday night.

Wednesday, 20th October 2010

Managed to sleep until just gone three but then that was it. In the space of the next three hours I wrote the blog in my head, put the world to rights and speculated on exactly what the surgeon had done and why my condition had got so bad over the last couple of years. Tried everything to get back to sleep, including listening to my usual cure "Rainbow in Curved Air" by Terry Riley or some Chicane tracks. Real chillout music, beloved of Michael Caine (Yes, really).

Finally fell asleep just before six only to be woken up ten minutes later to have my blood pressure, heart rate and temperature tested. I suppose it has to be done.

The weather, everyday I had been in there, was really sunny. The views were stunning and really acted as a distraction to the hospital environment. If you were up early enough the sunrise reflecting off of the Houses of Parliament was worth seeing. From about seven o'clock onwards the River Thames would start to come to life.
Crohn's Disease - view from St.Thomas' Hospital - 11th floor
View from my window looking north east
I was really looking forward to my breakfast but the mood was rather dampened by being given yet another litre of re-hydration fluid to drink. The problem was that I was running out of fruit juice to make it palatable so I set today's target as "go down to Marks and Spencer and buy a bottle of squash." This would need me to make it down from the eleventh to the ground floor and fitted in with the plan to try on my outdoor clothes to see how they interact with my pouch.

I successfully achieved the goal and returned with a nice, full bottle of squash to improve any more drinks I would be given. I would probably have got into trouble with the stoma nurse if she had seen me lifting this "heavy" object.

There was only a small group of doctors on today's ward round. The house doctor had a look at my scar and said that the staples, of which there were forty three, could come out tomorrow. Wonder if it hurts? I did toy with the idea of taking a picture of them but decided against it.

The doctor gave me option of going home tomorrow or Friday. It may sound odd but I chose Friday as my digestive system still wasn't balanced plus it gave us another day to plan how I would get home and what food we needed to buy in.

When the nurse came round to hand out today's drugs she said that they were a little concerned that some of my salts were below level. Her advice was to eat crisps, salty things, doughnuts, anything sweet. It went against everything you are told in the media but because Crohn's Disease patients have problems with malabsorbtion we have carte blanche to eat all these bad things. I was up for the challenge.

Later on I rang my wife to tell her to make arrangements for me to be picked up by our friend on Friday. No sooner had I made the call it was time for the handover between the day staff to the night staff. They were discussing whether I should be put on Loperamide (Imodium) to try and slow my system down. I told them I was going home on Friday to which one of them replied - "You're not going anywhere until we address this problem!"

I decided not to ring my wife back and tell her that Friday was in jeopardy. Best to see what the doctor said on the ward round the following morning.

Thursday, 21st October 2010

I felt that Wednesday had been a bit of a limbo day. The imbalance in my body salts and fluid intake had been going on for a couple of days and I'd not be given any Loperamide. If I was going to go home on Friday then I needed some action. I needed to know exactly who had the final say as to whether I was released or not.

I knew the Enhanced Recovery programme co-ordinator was on holiday, as was her assistant. Not very good planning. I thought if I don't do something I'll be here next week so I texted the co-ordinator to ask her who was standing in for her during her absence. I think this must have had an effect behind the scenes. I also asked the Ward Sister the same question. I mentioned that it would be my 30th wedding anniversary on Sunday and that I would like to be home by then. She came back a little later and said that I could go home for the day if I wanted!

When I saw the Registrar on the ward round I asked him if I could be put on Loperamide and he said that the surgeon would need to agree to that. I explained about my wedding anniversary and that I didn't really want to be in hospital by then. He checked my blood test results and said that in his judgment I would be able to go home on Saturday. I also asked him who had the ultimate say in whether I would be discharged or not. He replied that it was down to the surgeon who I would see on Friday's ward round. So still some doubt.

I made a few telephone calls and we changed arrangements so that I could be picked up Saturday. Now I had to hope that the surgeon would give his blessing. In the afternoon the stoma nurse came to see me to make sure that I was proficient in dealing with the stoma. She would be back on Friday to remove the stitches around the base of the stoma

So some further doubt. Roll on Friday

Friday, 22nd October 2010 - JUDGEMENT DAY

Last night was my best night's sleep since the drugs wore off after the operation. I had six full hours which is pretty good considering that there is always something going on around the ward. When I did wake up I sat in my bedside chair to take in the view. I was really looking forward to breakfast. This was more like it.

I saw the surgeon on the ward round. He said that they now needed to take some positive action to correct my fluid imbalance and prescribed the Loperamide. At last! He likes to leave it as long as possible for the body to correct itself without intervention but this was taking too long. He said that I should be able to be discharged in the next 48 hours. Did that now mean Sunday? I asked him if I should cancel my Saturday arrangements and he replied "not for the moment'.

I was concerned that by the time the Loperamide was released by the pharmacy it would be mid-afternoon and there would not be sufficient time for it to kick in and show sufficient improvement by the Saturday morning. Luckily the pharmacist was in the ward at the time and I had my tablets within a few minutes. Now all I had to hope for was that they had the desired effect and it was demonstrable.

The stoma nurse called in mid-morning to say she would be up after lunch to remove my stitches. She asked if I had taken any painkillers that morning. I replied that I'd not taken any for a couple of days. "I'll go and ask the nurses to give you some then" she said. That sounds ominous.

The other thing that needed doing was removing the staples up my middle. A student nurse was sent in to do that. She removed the dressing and it gave me a chance to count the little buggers. 43 of them! No wonder the surgeon had said that my bikini modelling career would be over. The nurse removed all 43 very quickly and easily whilst I watched the various tugs and barges make their way up and down the Thames. Another hurdle out of the way.

The stoma nurse came up after lunch with her curved scalpel and tweezers and proceeded to remove the conventional stitches. It stung quite a bit but wasn't too bad. I'm glad I took the painkillers. I told her that the plan was for discharge on Saturday. She replied that whilst she was happy I knew what I was doing with the stoma she wasn't happy with the fluid levels they were recording for me. She would prefer that I was in hospital over the weekend but would not put a stop to me leaving on Saturday providing the Loperamide had started working. Saturday discharge starting to look doubtful.

Around six o'clock the Registrar popped into the ward to tell me that my "bloods" (doctor speak for blood test results) were now fine. I asked him if that meant I could go home tomorrow and he said yes as far as he was concerned. Saturday looking more hopeful again but I still have a horrible feeling that someone could appear out of the woodwork at the last minute to scupper the plan.

I needed to know, if I was going to be discharged, what time is was likely to be and was told "around lunchtime". I rang my wife to tell her the (possible) good news and to confirm that a good friend of ours would be able to pick me up the following day. We won't know for certain, if I'm leaving, until tomorrow. It's a good thing I'm pretty laid back about this otherwise the indecision would be driving me mad.

Roll on Saturday.

Shortly before dinner on Friday night a new patient was wheeled into the ward and put in the bay opposite me. He was quite rotund, in fact rotund enough that a standard surgical gown did not meet at the back and he didn't have a dressing gown. Unfortunately he decided to get out of bed and even more unfortunately I happened to look up and what I saw quite put me off my dinner. At least I would only have to put up with this for one night (or not).

Midnight - I now understand why my wife complains when I snore and also feel I have some insight into what it might be like to spend a night in a walrus colony. The new guy promptly feel asleep and proceeded to snore most of the evening and night, interspersed with the odd moan. Thank goodness for in-ear headphones.

Saturday, 23rd October 2010 - DAY 14

For the first morning since I'd been in St.Thomas’ it was miserable outside and must have rained hard overnight. I was hoping this wasn't an omen.

I was just contemplating that my target date for discharge had been the previous Saturday and one week on I was still lying on my hospital bed. I knew that the original target was ambitious but I didn't expect to be in there that long, even having had such a major operation. Because my wife has coped so well at home and our friends have rallied round to help I have been able to remain very laid back about the whole affair. It has been so comforting to have supportive family and friends.

One week ago I felt terrible. I could not face any food, even the thought of it made me feel sick. Now I was positively looking forward to breakfast and I'd not been on any regular painkillers for 3 or 4 days so clearly recovery was well underway. What could stop me now?

At handover from the night to day shift I told the nurse that I was leaving today. A little bit later one of the Senior Nurses, who I'd not dealt with before, came over to see me and asked if I thought I was going today. I explained that as far as I was concerned all the boxes had been ticked and in four hours time I would be picked up. She said that my fluid levels were still high and that the doctor had not signed off at what level he would be happy for me to be discharged. (Starting to look like Monday again!)

I explained that the Registrar had seen me at six o'clock the previous evening and told me I could go. It sounded like he should have signed off some form accordingly. I also explained that the fluid level she was looking at related to the previous day and that the Loperamide had already had a beneficial effect in reducing the amount.

She then went off to contact my District Nurse to provide cover for me over the weekend. Being a Saturday she was unable to raise anyone at our local surgery. Looks like another hurdle!

Crohn's Disease - St.Thomas' Hospital - Northumberland Ward

My bed - Northumberland Ward - 11th Floor
Crohn's Disease - St.Thomas' Hospital - Northumberland Ward
My bags are packed, I'm ready to go .......
Finally the nurse came back and said that they had decided I didn't actually need cover for just a couple of days and that if I had any problems I could see my practice nurse on Monday. She then handed over two bags of drugs and my discharge letter. I was on my way! I told her that I was being picked up around half twelve. "Why so late?" she asked. A quick telephone call to my wife and we've brought my ETD forward by an hour.

After breakfast I had a shower, changed from my hospital pyjamas into outdoor clothes and packed my bag. Then I went down to Marks and Spencer to get some sandwiches and crisps for the journey home.

The blood test lady turned up to take one final sample and then it was just a question of waiting until my lift arrived. I decided to read my discharge letter to find out what they had done to me. Naturally it's all written in medical terms. I asked the nurse if she could help translate and even she struggled. Suffice to say it sounds like my innards were in a very bad way. It got me thinking just how much longer I could have gone on without ending up as an emergency case in our local hospital. It really doesn't bear thinking about.

[This is the text from the letter - "He underwent laparotomy, ileo-caecal excision of locally perforated Crohn's mass/stricture and excision of enter-enteric fistula. The intra-operative findings were of chronic small bowel obstruction due to terminal ileal stricture/inflammatory mass. There was gross right para-colic and midline fibrosis with terminal ileum drawn into a chronic abscess/fibrosis. An inflammatory mass was fistulating into a more proximal ileal loop, closely adherent to the recto-sigmoid colon. There was a redundant long sigmoid loop in the pelvis. Given the severe ongoing inflammation, partial chronic obstruction/oedema and localised perforation n the lower abdomen/pelvis, a primary anastamosis of the bowel was contra-indicated. This risk had previously been discussed with the patient.

A double barrelled ileo-colostomy was formed in the right iliac fossa. In the post-operative period the patient remained stable and made good progress with feeding and mobilisation. Post-operative anaemia was treated with blood transfusion and high stoma output was managed by electrolyte replacement."]

The letter also shows the date for my follow up appointment with the surgeon (11th January) when we would hopefully set the date for the operation to reverse the stoma.

Around 11:30 my wife and our friend turned up, having been able to find a space in the car park, one advantage of a Saturday discharge. We said our goodbyes to the nurses and were on our way.

Our friend was used to driving in London so he was the ideal person to pick me up. We had a very interesting journey home. He deliberately chose a route that avoided speed bumps, much to my relief. I wasn't sure how I would cope sitting in a car but I was fine.

We went through the parts of South London that I used to know well when I worked for Mansells and had to regularly visit their sites. I probably hadn't driven down those roads for at least 20 years. We even passed the church where, 30 years ago minus a day, we got married.

Follow this link for the next Chapter - Learning to Live with a Stoma