My appointment with the private GI specialist took place yesterday. It had been set for 09:45 but early that morning I was asked to if I minded a postponement to 2:30 pm. There had been some sort of emergency that had upset the doctor’s plans – I don’t recall what it was.

The short journey there, despite Elly’s careful driving, jiggled my innards unpleasantly. The hospital itself seems to be a former mansion in very large grounds – there were several stone buildings, pleasantly converted to their current use. We waited in the reception are for about 30 minutes until I was called in to see the doctor.

I was asked lots of questions: firstly what I felt was the most severe problem or symptom, then the next most serious and so on. My replies were the various pains, followed by the near total fatigue and lethargy which are preventing me from having anything like a life. I was asked about my gastric history, diet, lifestyle, what I wanted from this. Interestingly, the doctor didn’t ask about my current medication – I assume he can see these from my NHS records. (He also does NHS work in Edinburgh.)

The doctor also asked what I thought might happen if I stopped taking laxatives: (I think my distal colon would bung up badly, as had been seen by X-ray in April.) He examined my abdomen, listened to my heart and lungs, and then asked whether anyone had actually looked inside my colon. He seemed surprised that this hadn’t occurred. This doctor seemed genuinely interested in taking on my case, even though he too said that diagnosis was difficult.

As a result of this, and a lot of phone-work by Elly, I have an appointment for a sigmoidoscopy on Monday morning. As I recall, the phone calls included asking the specialist’s hospital’s costs for the procedure; then calling the insurance company to ask whether, when and where they would pay for this procedure. (It has its own hospital in Glasgow; this would be slightly cheaper but I think the travel would be more than I can currently bear.) Elly then had to call the specialist’s hospital to confirm I would be treated there and that the insurers would pay for it.

Once this has happened, I will have pretty much used up the amount the insurers will pay for diagnosing my conditions. I’m also alarmed by the amount of calls Elly made to arrange this. It took an amount of thought and energy to ask the right questions – what on earth would a lone person do?

Since then I’ve spent most of the time prone. I’ve been even more fatigued, even though the pain is generally quite reduced. My thinking processes are hardly here most of the time, walking from one end of the flat to the the other involves a couple of stops, and despite sleeping more than 8 hours a day (albeit only 3 hours at a time) I’ve done almost nothing but lie down. So I’m beginning to wonder if the fatigue is separate from the colonic issues: the fatigue seems to be increasing as the pain reduces. Ah well – something else to ask!