Friday 19th November 2010 – With life returning to some sort of normality our thoughts were turning to the festive season. I was supposed to avoid anything containing dried fruit or nuts. That ruled out mince pies, pudding and cake. It would be a strange Christmas.
A letter from my GP arrived saying that the recent blood test showed that I was still anaemic. A prescription was enclosed for iron tablets. I would discuss this with my consultant on Monday to make sure they were compatible with the other medications.
Saturday 20th November 2010 – I felt uncomfortable. My stoma was stinging again and there was no obvious cause. I was wondering if I had cut the template too small and the backplate had started rubbing up against the raw skin around the base of the stoma. I took some painkillers which seemed to help..
Monday 22nd November 2010 – East Surrey Hospital – the area around my stoma was still very sensitive. It looked bruised even though the pain had now passed. I rang the stoma nurse. Would she be able to see me that afternoon as I was already going into East Surrey Hospital for another appointment? Yes, if someone paged her she would come to have a look at the problem.
At least my eating campaign had been working. I was only a kilo less than my pre-surgery weight. Almost time to say goodbye to my unhealthy diet.
I arrived for that afternoon’s appointment hoping to meet the surgeon. I wanted to know if he had been sent any further details of what they had found when they opened me up but he was unable to make it after all. I did, however, meet the IBD Nurse and we reviewed my medication. Would I like to join their Patient Panel? I said I would think about it.
The consultant joined us and asked If I could come in again on the following Monday when the surgeon would definitely be there. I hadn’t realised that he had taken on a guest role at my operation, and was the third surgeon on the St.Thomas’ team. I would get a chance to find out, from the horse’s mouth, exactly what they did to me, and whether he also found it “enjoyable“.
The consultant explained how the dose of immuno-suppressant I needed to take would be determined by the results of the blood tests as certain markers would show how active the Crohn’s disease was. Although I’d had the operation to remove the ulcerated stricture, and generally repair my bowels, I still had Crohn’s disease. The aim would be to manage it to avoid the need for further surgery in the years to come. Another blood test was arranged for Friday and the results should be available for the following Monday afternoon.
They paged the stoma nurse. Once she had found the right room she had a good look at the area around my stoma. She suspected that there was an abscess just below it. The IBD nurse and consultant were called over to have a look as well and all agreed. I was put on a two-week course of co-amoxiclav, an antibiotic, to clear it up and given strict instructions to ring the stoma nurse at the end of the week to let her know if there had been any improvement.
The abscess would explain the incident two weeks previously when I was losing blood. It suggested that there had been a build up just below the stoma, and when the abscess burst blood had suddenly appeared in my pouch and triggered the trip to A&E.
I took the first of the antibiotics with my dinner but only managed to get halfway through before I felt quite ill. I didn’t finish my meal and went straight to bed. Maybe it was a reaction to the new tablets or something I had eaten. I hoped I would feel better after a good night’s sleep.
Thursday 25th November 2010 – I had regained my appetite and during breakfast I went online to order a repeat prescription. By 4 o’clock the medications had been delivered by our local pharmacy.
Upon opening the package I found a list of all the medicines and accessories that I could order. Yet again it left me wondering how much my condition would cost me if it wasn’t for the NHS. By now I had suspended my prescription prepayment card whilst I had a stoma.
Friday 26th November 2010 – another trip down to the doctor’s for a blood test and then into Redhill to replenish food supplies. It was the first time I’d been shopping completely on my own and had to be careful lifting bags into the back of the car.
Monday 29th November 2010 – East Surrey Hospital – my last planned visit for a while. I met with the surgeon who had indeed taken part in my ileostomy. He remarked how well I looked considering: “what they had done” to me. He had joined his old colleagues at St.Thomas’ on the day to take part in the operation which he described as a “classic” and one of the most complex they had ever carried out. My innards were in a really bad way.
He had a trainee doctor sitting in with him for the clinic and was showing her my pre-operative CT scan. He used the description “looking like an octopus”. Where had I heard that before? My intestines had, in places, attached themselves to other parts of the body such as the back muscles. That last comment was quite a revelation and would explain the back pain that I had been suffering from for the last couple of years. I dread to think what would have happened if the surgery hadn’t been carried out when it was.
Looking to the future I asked him what could prevent the reversal operation going ahead in the New Year and what would be involved. He replied that as long as the surgeon was happy that my body could cope then it should happen as planned.
The procedure would be a fairly simple one, cleaning up the ends of the intestines, joining them together and poking them back inside my abdomen. It usually took around half an hour. I could expect to spend three to five days in hospital and then two 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 the planned date for the surgery.
The results of last Friday’s blood test showed that my red blood count had risen from below 10 to 10.4, so at least it was going in the right direction. Maybe the iron tablets were starting to work. My sodium and magnesium levels were OK which meant I didn’t need to drink any more of the re-hydration salts. Some of the other readings were a bit low but I didn’t understand the significance of these. They were markers that could be used to decide Crohn’s disease activity.
He asked to have a look at my stoma to check if the abscess had healed following the recent incident. I quickly removed the pouch whilst they looked on. It had healed well. I fitted a new pouch and surprised myself at how well organised I was and how quickly I completed the task. (I wondered if there was a world record for this activity?) He said that he wouldn’t need to see me again and was handing me back to the care of gastroenterology.
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. It had been threatening south-east England for a few days.
A follow-up letter from my specialist arrived stating that the recent blood test results confirmed that I was suffering from not just thrombocytopenia but also leukopenia. That second term prompted a quick search on Wikipedia :
Thrombocytopenia is the presence of relatively few platelets in blood
Leukopenia is a decrease in the number of white blood cells
He thought it was due to the high dose of azathioprine that I had taken in the lead-up to my operation. I had now stopped taking these tablets completely whilst they monitored to see if my blood test results would improve. My specialist told me that he was a world expert on the use of this particular drug. I should be in good hands.
It was still snowing but not very hard, probably another inch maximum. Just 10 miles away a friend was unable to get out of her driveway as a further eight inches had fallen. We had escaped lightly, so far.
Wednesday 1st December 2010 – Just as I was thinking any bad snow had passed us by, the forecast was proved right. Nothing like as bad as Scotland or the north of England but enough to disrupt travel. Another friend rang to say do not venture out onto the roads as they were treacherous. I spent the day in the warm. My plan of taking a trip over to Leatherhead (about 20 miles away) to see one of my clients was put on hold for a few days.
It was time to try some more chores. When I saw the surgeon on Monday he had said I could start getting back to normal activities so I helped with the mucking out, filling haynets and preparing the day’s feeds. I found as long as I took it slowly I could cope quite well.
Thursday 2nd December 2010 – The forecasters were right again as another eight inches of snow had fallen. I couldn’t remember anything like it for at least 10 years. Surrey Police were telling road users to only make emergency journeys.
Mid-afternoon there was a knock at the door. It was the delivery driver from Fittleworth, the company that supplied pouches and stoma accessories. Given the appalling weather conditions and the message from the police I had assumed I wouldn’t get the delivery until after the weekend. I thanked him profusely and emailed Fittleworth to compliment them on their service. Any thoughts of returning to work before Christmas would have to be shelved. I didn’t want to risk getting stuck on a train or in the car with a potentially uncontrollable stoma!
A Stressful End to the Year
As I mentioned in the Introduction, this book concentrates on my Crohn’s experience and there are only passing references to my personal life where it helps put my health into context. This is a case in point.
Shortly after I was discharged from hospital my elderly mother had a fall at her care home which left her with a broken neck. She was admitted to hospital. I felt useless as being unable to drive made visiting difficult and the onus fell heavily upon my sister. It was a very stressful time.
In early December my mother died as a result of her injury. The weather had shown no improvement and it was touch and go if the funeral would go ahead. During that time I stopped keeping a diary and from then on only recorded the dates when something happened that was relevant to the medical story.
Tuesday 11th January 2011 – Time for the surgical follow up appointment at St.Thomas’. A very important day as I would find out when the reversal operation was planned for. I saw the surgeon’s registrar who was pleased with how I was progressing. The proposed date for the reversal was 4th April – three more months to wait. I had hoped it could have been sooner but knew that six months from the original operation was the norm. Easter was very late that year so I was expecting to be in and out of hospital in plenty of time for Good Friday. Two weeks before the operation I would need to attend another Pre-Operative Assessment and have the necessary tests carried out.
The registrar asked me to see my usual consultant at East Surrey Hospital to organise the further management of the Crohn’s disease leading up to the reversal. He was expecting me to be put on a maintenance dose of azathioprine.
Tuesday 18th January 2011 – Another milestone – my first day back at work. It was with a mixture of excitement and trepidation that I took my first trip into rush hour commuter land and quite a wrench to get up so early – 5:30am. I needed the time to shower, change my pouch, eat breakfast, feed the ponies and then drive to the station. This was followed by a 40-minute train journey to Victoria and then a further 15 minutes 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 underground leg of the journey which I was least looking forward to. What if there was a problem and we got stuck in a tunnel for any length of time? I was comforted by the thought that at least the pouch would give me a certain amount of “storage capacity” that I would not have as a Crohn’s sufferer normally.
My colleagues gave me a warm welcome. I had already 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 few days one of my workmates christened the stoma “Predator” as he said that it sounded like the character from the film. I thought that “Alien” might be more apt.
The positioning of my pouch meant it was necessary to have loose fitting trousers and wearing a tight belt was not an option. The ideal solution was a pair of braces but I wanted to make it clear they were for comfort, not a fashion statement.
As I mentioned earlier, once you’ve lived with a stoma for a while you know the best time to ‘input” to get “output”. I made sure I had lunch at noon to ensure that the stoma became inactive before the train journey home. Strange noises on the Tube go unnoticed but on a quiet commuter train it’s not so easy. My defence mechanism was to put in some earphones, crank up my iPod and remain blissfully ignorant of any gurgling.
Wednesday 19th January 2011 – East Surrey Hospital – an appointment with the stoma nurse. I booked it at short notice as there had been a couple of minor leaks from my pouch and I 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 the hollow where the abscess below the stoma had been. I jokingly said to the nurse that I needed some human “polyfilla” to infill the gap. Not a problem. She produced a tube of Orabase, a translucent, sticky paste and it did the job. She suggested that I should try doing away with the additional foam sealing washer that I had been using. By omitting it also meant one less step to carry out when bag changing.
Monday 14th February 2011 – East Surrey Hospital – I saw my consultant. The blood test results were not encouraging as both my white cell and platelet counts had declined again. He already thought the azathioprine was the culprit so it had been stopped until further notice. He wanted me to have an ultrasound scan to check my spleen and wrote to Haematology asking them to review my case as a matter of urgency. Were the falling counts an autoimmune phenomena or “related to something more sinister”? That sounded ominous.
The most useful words in the English language are probably “Can you help me?”. They can work wonders in many situations. I went down to X-ray appointments, and explained that I needed to be seen urgently as I didn’t want my operation cancelled. Could they help me?. The usual waiting time was around two weeks but I was happy to take a short notice cancellation.
It worked. They rang the following morning telling me to report to the X-ray department the next day.
Wednesday 16th February 2011 – East Surrey Hospital, again – heading to the X-ray department for the ultrasound scan. The sonographer 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 should contact. I tried the “can you help me?” approach but, frustratingly, the haematologist couldn’t fit me in. He did, however, agree to look at the blood results and let my IBD specialist know of his conclusions.
Knowing that I had a problem with my platelet count I had asked one of the surgeons, back in November, what the threshold was for going ahead with the reversal operation. He said that if it went down to 50 (usual range between 150 and 400) then the operation would probably be cancelled. My level was much higher than 50 but the trend was downwards. I could see that if I didn’t take positive action in trying to hurry along the all clear from the haematologist the surgery might be pulled.
Monday 28th February 2011 – my London client moved office to the edge of Belgravia which made my journey a lot easier as the office was only five minute’s walk from Victoria Station. I could get into work earlier and therefore leave earlier. Result.
March – my efforts were taken up trying to get an appointment with the haematologist so that surgery wouldn’t be cancelled. I warned my client that I was likely to be unavailable during April so that they could make the necessary arrangements to cover my absence.
Wednesday 2nd March 2011 – the operation I underwent back in October was, to give it its the full name, a double-barrelled ileo-colostomy. As I previously mentioned this resulted in having two stomas through my abdominal wall, positioned one above the other. The upper stoma was formed from the end of my large intestine and was “resting” awaiting reconnection.
I’d noticed over the weekend that it had started to enlarge. If you are old enough to remember the television series “Spitting Image” you will probably recall the puppet of Mick Jagger with his grossly 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 concluded that I had a partial prolapse. It was quite common and nothing to worry about, just take it easy. Not so simple when you’re commuting to London most days.
Thursday 3rd March 2011 – the prolapse appeared to be getting worse. As I was in London that day I emailed the stoma nurse at St.Thomas’ to ask if she could see me. I needed some reassurance. She rang and asked me to come and see her at lunchtime.
St.Thomas’ Hospital was excellent, except for…..the lifts. Several were reserved for “theatre use only” during the day which meant a reduced capacity for everyone else. At peak times it was nigh on impossible to get one. Fortunately there were stairs leading off the lift lobbies; unfortunately the stoma nurses were based on the 12th floor. 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 what could be done about it. There were a number of options available in support wear. She went and found some examples including a pair of very unattractive support boxer shorts and some wide elasticated belts. I chose the latter and she rang the order through to Fittleworth.
The belt arrived the following day and was just what I needed. It was about 5 inches wide and fastened with velcro. I thought it would feel restricting to wear but, on the contrary, it proved very comfortable and held the prolapse in place well. It gave me a lot of confidence generally as it kept the pouch held firmly against my skin. When wearing a pouch you are very aware that its security is only as good as the quality of the adhesive on the backplate and your ability to fit it correctly. The elasticated belt was a godsend and I would recommend that, if it’s appropriate, all stoma patients should wear one.
Thursday 24th March 2011 – St.Thomas’ Hospital – off to the pre-assessment clinic and blood test for the upcoming reversal. It didn’t take as long as the previous one. There was no need to do the heart or breathing exercises but they did repeat the muscle and grip strength measurements. Everything was on track for 4th April. A good day.
Friday 25th March 2011 – after the highs come the lows. I had 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 was getting a bad feeling. I needed to get the 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 Friday and Monday morning trying everything I could think of to get the necessary letter but to no avail.
Monday 28th March 2011 – at lunchtime there was another call from the ERN at St.Thomas’ saying that the surgeon had reviewed my blood test results and that he was not prepared to operate with the platelets on such a downward trend. Any chance of being recovered by Easter went out of the window. I spent the rest of the day feeling angry and powerless but knew that I would still need to keep chasing.
Friday 1st April 2011 – I continued with my frantic attempts to get a response from the haematologist. After several emails and phone calls to the relevant secretary I finally managed to get an appointment for the following week.
Monday 4th April 2011 – the original date for the reversal operation. I tried not to think about it.
Wednesday 6th April 2011 – 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. There were around ten people waiting for tests but the next number called was mine. I felt 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 were generally down to my reduced immune system, which was all part of Crohn’s disease. As far as he was concerned he would have been happy for surgery to have gone ahead. Why couldn’t he have confirmed that 2 weeks ago?
He mentioned one further possibility for the low count – Lupus. Whilst he thought it unlikely it would be worth having a test. At least he wasn’t concerned by my slightly enlarged spleen.
Monday 11th April 2011 – I emailed the Enhanced Recovery Nurse to give her the good news and ask 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.
Tuesday 12th April 2011 – I needed to get a message to the lead surgeon. I already knew the format for St.Thomas’s email addresses so took a chance at getting his right. I composed a message explaining the haematologist’s point of view and said that it would be backed up with a letter in the next couple of days. I hit the send button.
Thursday 14th April 2011 – I went out for a lunchtime walk and somehow missed a call. There was a voicemail from St.Thomas’ Surgical Appointments asking me to contact them. Could this be what I was waiting for? When I rang back they informed me that the new date for my operation was Monday 13th June. I was both relieved and a little disappointed. I was hoping it would have been sooner. I mentioned that if a cancellation came through I could be available at short notice. We had already been prepared for me to be away during April so it would only take a couple of days to be ready again.
Knowing that the surgeon only operated on a Monday, I must have fallen victim to the three Bank Holidays in the intervening period, hence the delay.
Friday 15th April 2011 – I contacted East Surrey Hospital and asked them to cancel my appointment on 20th June. I asked them to try to bring it forward to 9th or 16th May so the medication could get sorted out in plenty of time before the operation. It was one of the things the surgeon’s registrar had asked me to organise before admission. Despite my best efforts they let me down.
Now we had a definite operation date we could plan the period leading up to it. It also meant I could continue working and earning money for another few weeks.
May 2011 – became a very busy month. I went into manic mode to get a lot of outstanding jobs completed around the house and garden before I returned to hospital. After that it would be at least six weeks of not being able to lift anything over 1kg. In hindsight having the original reversal cancelled worked out for the best.
To be on the safe side I organised a couple of intermediate blood tests to make sure there wouldn’t be any nasty surprises at the last minute and another cancellation.
Wednesday 1st June 2011 – The final blood test before the operation. Since I was working in London it was convenient to go over to St.Thomas’. A gorgeous, sunny day with London looking at its best.
Thursday 9th June 2011 – I had a call from a researcher at St.Thomas’ asking if I would donate any tissue that might arise from the forthcoming operation. He needed it for his research project looking at a possible cure for Crohn’s disease. He also asked if he could have an extra blood sample. I was happy to help as anything which might lead to a better understanding of the disease is worth supporting. He would see me the following Monday to get the relevant consent form signed.
Friday 10th June 2011 – an email arrived from the chief anaesthetist telling me not to worry about my platelet count. 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 the email as it showed they cared about communicating with their patients. It must be better for the surgical team if we are relaxed rather than stressed.
There were a few last minute jobs that needed doing around the house before another enforced break. I couldn’t help wondering how long the recovery would be from this surgery. In theory it should be a lot quicker than the ileostomy but would my digestive system go into lock down again and delay my discharge?