Crohn's Disease - Chapter 6 - January to May 2011- returning to work with a stoma

DIARY

Tuesday 11th January - An important day today. It was time for the follow up appointment, at St.Thomas', to hopefully set the date for my reversal operation. I saw the surgeon's registrar who was pleased with the progress I had made and set the operation date as 4th April - 3 more months to wait. I was hoping it could be sooner but I always knew that 6 months from the original operation was the norm. Easter was very late that year so I should be in and out of hospital in good time for the Spring holiday.

Tuesday 18th January
- my first day back at work. I would have returned sooner if it hadn't been for the bad weather. I didn't want to get stuck on a train with an uncontrollable stoma and pouch. It was with a mixture of excitement and trepidation that I took my first trip into rush hour commuter land. It was a bit of a wrench to get up so early - 5:30am - but I needed the time to change my pouch, eat breakfast, give the horses their breakfast and then into the car to drive to Redhill station. This was followed by a 40 minute train journey to Victoria and then 15 minutes, or so, on the Victoria Line to Euston. By leaving so early it avoided the worst of the crowds plus I could get away at a decent time in the evening. It was the tube leg of the journey which I was looking forward to least but it all worked OK.

I got a lovely warm welcome from my colleagues. I decided the best way to deal with the stoma was with humour and complete honesty. If I had to make a sudden exit from a meeting or was making strange, involuntary noises then I needed them to know why. After a while one of my colleagues christened the stoma "Predator" as he said that it made sounds like the character in the film of the same name. The nickname stuck.

Because of the positioning of the pouch it was necessary to have loose fitting trousers and wearing a belt was not an option. The ideal solution was a pair of braces but I wanted to make it clear I was wearing them for comfort, not as a fashion statement.

Once you’ve lived with a stoma for a while, how shall I put it, you know the best time to input to get output. I suppose it’s rather like house training a puppy. I made sure I had lunch at noon because there was a finite time between eating and the stoma becoming active. The aim was to try and be back in a "quiet" state before the train journey home. Strange noises on the tube go unnoticed but on a quiet commuter train it's not so easy. My way round it was to put in my earphones and crank up my iPod so at least I couldn't hear it.

Wednesday 19th January
- I had appointment at East Surrey Hospital with the specialist stoma nurse. I made it at short notice as I had had a couple of minor leaks from my pouch and needed advice. Maybe crawling round in the loft to wire some down-lighters was not the best idea with a stoma in tow but someone had to do it.

The leaks appeared to be caused by a hollow which had formed below the stoma at the site of the abscess. I said to the nurse that what was needed was a sort of human polyfilla to infill the gap. No problem. She produced a tube of Orabase, a sort of translucent, sticky paste and it did the job. She suggested that I should try doing away with the additional seal ("washer") that I had been using. Not using the seal made applying the bag a lot easier.

Monday 14th February
- I saw my specialist at East Surrey Hospital. The blood test results were not encouraging as they showed that my platelet count had declined again. He already thought it was the Azathioprine that was doing it so I had been taken off of it until further notice. He wanted to refer me to Haematology and to have an ultrasound scan to check my spleen.

“Can you help me?” are probably the most useful words in the English language. I’ve found this approach works in most situations. I went straight down to x-ray appointments, explained that I needed to be seen urgently as I didn't want my operation cancelled and asked for their help. The usual waiting time was around two weeks but I said I was happy to take a short notice cancellation.

It worked. I got a call the following morning telling me to report to the x-ray department on Wednesday 16th February.

Wednesday 16th February
- I was off to East Surrey Hospital again, heading to the X-ray Dept. for the ultrasound scan. The radiographer had a good look around and told me that I had some soft kidney stones and that my spleen was very slightly enlarged, but nothing to worry about. I now needed to get an early appointment with Haematology. I enlisted the help of the stoma nurse who gave me the name of the secretary that I needed to contact. I tried the “can you help me?” approach but unfortunately the haematologist couldn't fit me in. He did, however, agree to have a look at the blood results and let my IBD specialist know of his conclusions.

When I had seen one of the surgeons back in November I was already aware that I could have problems with my platelet count and asked him what the threshold was for not going ahead with the reversal operation. He said that if I got down to 50 (usual range between 150 and 400) then the op would probably be cancelled. My level was much higher than 50 but the trend was downwards so I could see that if I didn't take positive action in trying to hurry along the all clear from the haematologist the op might be pulled.

Monday 28th February - my client moved office to the edge of Belgravia today which made my journey a lot easier as I no longer had to take the Tube from Victoria to Euston. The office was only 5 minutes walk from Victoria Station so I could get into work earlier and therefore leave earlier. Result.

March - much of my efforts had been taken up trying to get to see the Haematologist to prevent my reversal operation being cancelled. I warned my client that I would be unavailable shortly so that he could make the necessary arrangements to cover for my absence.

Wednesday 2nd March - The word “stoma” is from the Greek for “mouth” so I actually had two stomas in my abdomen. (And no I didn’t take any pictures - somethings are a little too private)

The stomas were the two ends of my gut where the surgeon separated them. The lower one was more prominent and was formed from the end of my small bowel. This was the "active" bit. The upper stoma was formed from the end of my large intestine and was "resting" awaiting reconnection.

I'd noticed over the weekend that the upper stoma had started to enlarge. If you are old enough to have seen the ITV series “Spitting Image” you will probably remember the puppet of Mick Jagger with his exaggerated lips. The enlarged stoma looked as if the puppet was trying to escape from my abdomen. I rang my local stoma nurse and explained. She asked me to go in and see her that afternoon. When she saw the problem she said that I had a partial prolapse. It was quite common and nothing to worry about, just take it easy.

Thursday 3rd March - the prolapse appeared to be getting worse. As I was in London I dropped a quick email to the St.Thomas's stoma nurse to ask if she could see me as I needed some reassurance. She rang back and told me to come over at lunchtime.

St.Thomas’ Hospital is excellent, except for.....the lifts. It can take ages to get anywhere in them as several are reserved for "theatre use only" during the day. Fortunately there are stairs leading off of the lift lobbies; unfortunately the stoma nurses are based on the top floor (12th). I decided to prove my fitness and walked up. When I mentioned it to the nurse she said she couldn’t manage that and she hadn’t had an operation.

I showed her the stoma problem and asked if there was anything that could be done about it. She replied that there were a number of options available in "support" wear. She went and got some examples including some very unattractive elasticated boxer shorts and some wide elasticated belts. I chose the latter and she said she would ring the order through to Fittleworths, the company that provided my stoma supplies.

The belt belt arrived on the Friday and was just what was needed. It was about 5" wide and fastened with velcro. I thought it would feel restricting to wear it but it was actually very comfortable and held the prolapse in place. In fact I found it gave me a lot more confidence generally as it kept the bag held firmly against my skin. When wearing a bag you are very aware that it's security is only as good as the quality of the adhesive on the backplate and your ability to get it fitted correctly. The elasticated belt was a godsend and I would recommend that, if it's appropriate, all stoma patients should wear one.

Tuesday 8th March - working in Belgravia was proving very pleasant. Lunchtime walks were always interesting. The architectural styles were fantastic matched only by the property prices. (6 bedroom flat - £39.25m). Today I happened to see the Hungarian Ambassador who I imagine was on his way back from Buckingham Palace. Given my interest in horses and carriages it was worth taking a few pictures.


Belgravia - Ambassadorial Delivery Service
One of the carriages from the Royal Mews
Thursday 24th March - I went up to St.Thomas’ for the pre-assessment clinic and blood test for the upcoming reversal. It didn't take as long as the previous one as I already knew a lot of the details from before. I didn’t need to do the heart or breathing exercises but they did repeat the muscle and grip strength measurements.

Friday 25th March - Not a good day. I got a call from the Enhanced Recovery Nurse telling me that the latest blood test showed my platelet count had dipped to 66 (very low) and that the operation was in jeopardy. I needed to get a letter from the haematologist at East Surrey Hospital stating that he was happy for the operation to proceed otherwise it would be postponed. I spent the next two days trying everything I could to get the necessary letter but to no avail.

Monday 28th March - got a call from the ERN at St.Thomas' in the morning saying that the surgeon had reviewed my blood test results and that he was not prepared to operate with such a downward trend in platelet count. Oh bugger. Any chance of being recovered by Easter went out of the window.

Friday 1st April - I made more frantic attempts to get a response from the haematologist and finally managed to get an appointment for the following week after several emails and phonecalls to the relevant secretary.

Monday 4th April - The original date for the operation. I should have been under the knife today.

Wednesday 6th April - in to East Surrey Hospital to see the haematologist. First I needed a blood test and was told to push the "Priority" button to get a ticket. I’d never done that before but it certainly works. There were about ten people waiting for tests but the next number called was mine. I felt a bit guilty about jumping the queue but needs must. After 15 minutes or so I was called into the haematologist's office and he had the results. The platelet count had already gone up from 66 to the mid 80's. He told me that he thought my blood problems are generally down to my reduced immune system, which is all part of Crohn's disease. As far as he was concerned he would have been happy for surgery to have gone ahead. He did say that there was one further possibility, Lupus, but he thought that was unlikely. They would do the test anyway. He wasn't concerned by my slightly enlarged spleen.

Monday 11th April
- I emailed the Enhanced Recovery Nurse to give her the good news and ask if she could tell me when I might expect to go back under the knife. She replied that it was up to the surgeon and she had no influence on the process. I suppose that should have been obvious really.

Tuesday 12th April - I already knew the format for St.Thomas’ email addresses so took a chance at getting my surgeon's address right. I explained the haematologist's point of view and that it would be backed up with a letter in the next couple of days and hit the send button. I had nothing to lose.

Thursday 14th April - Went out for a walk lunchtime and my 'phone started bleeping to tell me there was a voicemail. I don't know why I didn't pick up the original call, my phone seemed to be good at going straight to voicemail. Probably Vodafone’s fault.

It was a message from St.Thomas' Surgical Appointments asking me to contact them. When I rang them back they told me that the new date for my operation was Monday 13th June. I was both relieved but also disappointed. I was hoping for it to be sooner but I think I was a victim of the three Bank Holidays in the intervening period. The surgeon only carried out that type of operation on a Monday, hence the delay. I told them that if a cancellation came through I would take it. We were already prepared for me to be away earlier in the year so it would only take a couple of days to be ready again.

Friday 15th April
- contacted East Surrey Hospital to ask them to cancel the appointment they had made for 20th June as I was expecting to be in St.Thomas'. I asked them to try and bring the appointment forward to 9th or 16th May so I could get my medication sorted out in plenty of time to start taking it prior to going into hospital. It was one of the things the surgeon had asked me to organise before admission. Despite my best efforts they let me down. More of that later.

Now we had an operation date we could plan the period leading up to 13th June. It also meant I could continue working and earning money for another few weeks

May - was a very busy month. I went into manic mode to get lots of outstanding jobs around the house and garden completed before I went into hospital and would then have at least six weeks of not being able to lift anything over 1kg. It may sound funny but having the original reversal cancelled actually worked out for the best. In the interim I had a couple of blood tests to make sure there wouldn't be any nasty surprises at the last minute.

June - Admission is getting closer

Wednesday 1st June - The final blood test before the operation. Since I was working in London it was more convenient to pop over to St.Thomas' than down to my doctor. A gorgeous, sunny day with London looking at its best.


The House of Parliament

The Houses of Parliament on a beautiful day
Friday 3rd June - Our last chance to have a few days out and about. We live only 15 minutes from the National Trust property at Wakehurst Place and the weather was looking good so that’s where we headed. If you’re into plants there's always a lot to see.

Wakehurst Place - the Iris garden

The Iris Garden at Wakehurst Place
Thursday 9th June - had a call from a researcher at St.Thomas' asking if I would consent to donating any tissue that might arise from the operation to his research project into a cure for Crohn's disease. He also asked if he could have an extra blood sample. I was happy to help as anything which may lead to a better understanding of Crohn's disease is worth supporting. He said that he would see me the following Monday to get me to sign the relevant consent form.

We spent the afternoon at the RHS Garden Wisley. Again it's somewhere that always has something new to look at, including this very realistic model heron. Make that a very tame real heron.


Wisley - Heron
Thought this was a model at first
Friday 10th June - I received an email from the chief anaesthetist telling me not to worry about my platelet count and the operation would not be cancelled this time. If necessary they would have a pool of platelets available in Recovery. It was a real lift to get this email as it shows they really care about their patients. It must be better for the doctors for us to be relaxed rather than worrying about everything.

Two days to the operation and I was positively laid back, just waiting for the off.

Sunday 12th June - off to St.Thomas'