Platelets are the clotting component that stops bleeding in the event of a cut or injury. In May 2008 a routine blood test showed that my platelet count had started to drop.
I wasn’t too concerned, at first, but it continued to decrease and in July the decision was made that I should stop taking azathioprine as it was the most likely cause of thrombocytopenia (low platelets). Bearing in mind that I was taking it as “the last resort” before surgery there could be uncertain times ahead. I was left just taking Pentasa.
I saw my consultant in the November and he noted: “He is very well in himself” and said that I could self-medicate up to 20mg of prednisolone should I feel I was having a flare-up.
Life carried on without incident until April 2009, when the back pain at night returned yet again and I needed to take painkillers (co-codamol) to get to sleep. I found that the only comfortable place was on the sofa where, by lying on my side, I could support my back and my flank at the same time. I wasn’t due to see my consultant until the beginning of June but I asked for the appointment to be brought forward and I saw him at the end of April.
In the follow-up letter he said that I was “having an increased amount of right iliac fossa pain” but he wasn’t convinced that it was related to active Crohn’s, more as a result of my existing stricture. We agreed that I should re-try a “therapeutic” dose of Budesonide as it had less side effects than prednisolone. He also asked me to have blood and faecal calprotectin tests. (Calprotectin is a protein biomarker that is present in the faeces when intestinal inflammation occurs). Finally he said he would speak to the radiologists about arranging some imaging and a few days later the date for a CT scan came through – 20th May.
As is often the case, the new drug seemed to be working well but then the pain became worse again and I was starting to worry that there might be something going on inside that was more than Crohn’s.
I had the scan, as planned, but when I went for the follow-up appointment, two weeks later, the radiologist’s report was not available. The scan itself was on the system so my consultant opened up the file and we watched it on his computer screen. The first thing that struck me were the large areas of solid black that were present. To my untrained eye they looked serious. Did they represent growths in my abdomen? He explained that they were just air pockets but he was struggling to interpret the complexity of what we were seeing. It needed an experienced radiologist to fathom out what was going on. I was booked in for another review in two months’ time.
During that period we continued to compete with our ponies but I was starting to struggle. I found it very uncomfortable to sit on a carriage for any length of time. Even the horsebox was becoming difficult to manoeuvre despite having power steering. At the back of my mind I wondered what would happen if we arrived at an event and I was then taken ill. Who would have driven the lorry back? In July we took part in our final show, at Epsom, not too far from home.
It wasn’t until that next appointment, in early August, that I was told the CT report was now available. The delay was because of the complicated picture of both ileal disease and the suspicion that I was fistulating into other parts of the small bowel, possibly the sigmoid. The suggestion was that I may have a localised perforation “with no definitive collection“. My consultant put it in simple terms: “It looks like you’ve got an octopus in there”.
I had heard the term “fistula” but had no idea what it meant. It sounded somewhat unsavoury. The consultant explained that it was an abnormal connection between two structures i.e. bowels, organs, even forming openings through the skin. Luckily(?) mine were internal, between sections of intestine, so any leakage was kept within my digestive system. They sounded serious. It was time to resign myself to surgery, especially as I could no longer take azathioprine.
He suggested I adopt a low fibre diet to make it easier for the food to pass through my digestive system, especially the stricture, and try to reduce some of the pain. He asked my GP to prescribe supplement drinks to provide additional protein and nutrients. I also started a long course of ciprofloxacin, an antibiotic, “for it’s anti-Crohn’s effect and to make sure there is no residual infection”. A follow-up appointment was set for 4 weeks time.
The ciprofloxacin had no effect. If anything I felt worse so it was back to see the consultant again on 1st September, just two weeks later, expecting that it would be time to bite the bullet and agree to the knife.
I was surprised when he said that there was one last drug – a final “final” resort – that we could try but if that didn’t work I would be looking at surgery. The drug, infliximab (trade name Remicade), was a monoclonal antibody to human tumor necrosis factor alpha (TNFα), first used to treat Crohn’s disease in 1999. (No, I didn’t know what it meant either). It had been shown to be beneficial in treating fistulas and was therefore well suited to my condition. The downside was the cost. It was very expensive and needed approval from the Primary Care Trust (PCT) before it could be prescribed. He would get it raised at their next Departmental Management Meeting.
The thought of what was going on inside my abdomen scared me. I was desperate to get the approval and start the infliximab but the process sounded like it could easily take a long time. I thought it might need a little help to push it along so went to see my GP and asked for his support in getting approval – quickly.
After a week or so I rang my consultant’s secretary and explained the problem. She realised the gravity of the situation and said: “I’ll give you the telephone number of the Chief Pharmacist. He might be able to help“. I had nothing to lose so I rang him. I think he was rather taken aback that a patient had his direct line but I explained my predicament. He replied that infliximab did not need PCT approval, he could sign it off! He said: “I’ll ring you back” and true to his word, within 10 minutes, he rang back and told me: “It’s all approved“. That was my first lesson in finding the right person to talk to and not being afraid to ask for their help. Since then I’ve found that actively managing my treatment pays dividends.
Infliximab is administered by means of an infusion. The first one took place on 9th October in the chemo suite at Crawley Hospital. I was accompanied by my wife. On arrival we were shown into the waiting area which had views across to Gatwick Airport. We amused ourselves watching the planes taking off and landing. It wasn’t long before the nurse appeared to tell us they were ready. My wife made her way into the town centre to do some very early Christmas shopping. I was shown into the treatment area and asked to take a seat in a large armchair.
A cannula was inserted, flushed through and the infliximab connected. It is clearly a very powerful drug to be able to deal with fistulas but potentially had some nasty side effects. During the infusion I was closely monitored to make sure there were no adverse reactions. The whole process took a couple of hours and I found it so relaxing that I went off to sleep! When my wife returned she found me tucking into a plate of fish and chips that the hospital had kindly provided. Two weeks later I had my second infusion and was starting to feel a lot better.
I went to see my consultant and in the follow-up letter he wrote: “I saw the patient today and he is a changed man and found the infliximab extremely valuable and effective“. (I have since seen this reaction described as the “infliximab high”.)
My platelet count had started to return towards a normal level. At the time of the second infusion it had reached 192. The criteria set for restarting azathioprine was 200. My weight, however, had sunk to 80kg, a lot lighter than I had been for a while.
On 23rd November I had my third and final induction dose but by now I was starting to feel worse again. It was decided to monitor the situation and restart the azathioprine, albeit at a reduced dose of 50mg. but it was clear where I was now heading……