On being a medical curiosity

When the medics and the tests finally reached a diagnosis of the condition that has taken out six weeks of my February and March (so far!), it was that I had osteomyelitis of the symphysis pubis. This is a rare condition: so rare that it doesn’t even appear on the NHS website. A ‘rare and elusive diagnosis’, which probably explains why it took them so long to arrive at it.

When I finally got around to pressing for a consultation with my surgeon, he was as puzzled as the local GPs had been. That’s the great advantage of being a medical curiosity: the professionals get interested and really want to find out what’s going on. Although it involved a lot of sitting around in hospital waiting rooms both that day and a number of days following, the battery of tests finally pointed to a result. Two MRI scans and blood tests indicated that there was evidence of an infection around the symphysis pubis. This is treatable with antibiotics, but they have to be pretty serious antibiotics, and the course is likely to take six weeks or longer. Naturally it’s important to identify the exact bacterium and target it with the most appropriate antibiotic. My surgeon was very keen to get me in and start IV antibiotics as soon as possible; so after the second MRI and a cystogram to make sure there were no leaks of urine from my bladder or urethra, I was admitted to the Urology Ward, precautionarily catheterized (oh, joy!) and written up for broad spectrum antibiotics.

At this point a near mythical character enters the story: The Microbiologist. My surgeon told the Microbiologist what he proposed, and the Microbiologist commanded to hold off on the treatment until a biopsy could be performed. I suppose this is the problem with having a condition that requires interdisciplinary cooperation: it’s not a question of my surgeon being outranked, but that if you ask a colleague of another specialism for help, you pretty much have to do what they say, even if you’d prefer to get on with what you first thought of. But it made sense, really. Broad spectrum antibiotics before the biopsy could easily mask the real cause of the infection, and make that all-important targeting difficult to impossible.

So I was sent home with catheter, after 24 hours in hospital, to wait for the biopsy. We hoped this would be done on Monday. It wasn’t possible until Tuesday, when we returned to the hospital’s orthopaedic centre. A biopsy of the pelvis isn’t a pleasant procedure, no matter how charming the radiologists and nurses may be, who are administering it. It involves lying under the X-ray, having your belly injected with local anaesthetic until the repeated question “Any pain, now?” gets an honest No answer. Then the biopsy needle is inserted, and though I wasn’t looking too closely (I wouldn’t have been able to see anyway) it was clear they were drilling into the bone. They did succeed in getting three good samples.

Then we drove on to the Urology Ward again. (The hospitals are on three different sites, and my surgeon wanted to keep his eye on me, rather than let me be taken over by orthopaedics, which is probably what they wanted to do.) Admission again, cannula in, more blood tests, and finally the first IV antibiotics.

The following day was taken up with waiting for results of the biopsy, because on this depended whether I would be allowed to go home with oral antibiotics, or whether they would want to continue IV administration which would involve setting up a plan for that to happen. There were some high points in the day: family visiting, and a consultant (I’m not sure of what specialism) coming to ask if she could bring some medical students to talk to me about my condition. (Another fun consequence of being a medical curiosity.) With various health professionals in the family, I’m happy to help in the training of future medics; and the four students who arrived were delightful young people. I enjoyed watching them being put through their paces of asking me questions, telling the consultant what they had learned from my answers, what else they should have asked or noticed, and carrying out some physical examination. One of the most helpful things in the whole experience of going through all this pain and incapacity, has been the opportunity to talk to many different people about it. Talking somehow puts things in perspective: the ‘talking cure’ is obviously not just for mental health problems, but can also help in the cure of physical ones.

During the day we were inching towards an identification of the infection: word came up that it was a coliform bacterium – maybe not that surprising, but they still needed to know which one. They weren’t any nearer to knowing why I was one of the 1 in 500 prostatectomy patients who suffer this complication. The video of the surgery showed that the pelvis had not been nicked during the procedure. Possibly the cutting and rejoining of the urethra had allowed some urine to remain in the pelvic space, and this might have caused an E.coli infection some five weeks after the operation. Perhaps we’ll never know. E.coli is always present in the body, but why should it be ‘triggered’ in this particular case?

While MPs in Westminster were voting to reject a ‘no-deal’ Brexit, I was getting ready for a second night in hospital. It was uncomfortable because of the pain, but at least the catheter meant I wasn’t having to get in and out of bed to go to the toilet every hour.

And another day dawned. At last the Bone Infection Unit consultant brought news that it was indeed an E.coli infection and could be treated with a six-week course of oral ciprofloxacin, and I would be allowed home that afternoon. This would have meant returning the next morning to have the catheter removed, so I asked if that couldn’t be done that afternoon: it was only a little more than 12 hours earlier than we had agreed. Luckily, my surgeon agreed, the nurse had the catheter out within minutes, there was the usual procedure of drinking fluids and producing urine to prove that the bladder and urethra were working normally, and at last I walked out through those hospital doors.

You always hope that every next step in the treatment process will produce almost instant results, that you’ll feel immediately well again. It’s already clear that isn’t how it works. So, though I have moved on to the next stage of recovery, it is only the next stage. There is still more to come. Readers of a queasier disposition may be hoping, not too much more.

2 thoughts on “On being a medical curiosity”

  1. My empathy. Having been a medical curiousity for various reasons for many years. I hope you get clear resolution soon.

    Be gentle with the medical students.

    🙂

    Joanna

    Like

    1. Indeed, I hope I was more than gentle: charming, interested, and helpful. But you’d better ask them what they thought about it. I was clearly a ‘case’ they’d never come across before, and their teacher was putting them through it with her questions and promptings to them.

      I’m at least being treated now, though the antibiotics don’t seem to have had much effect yet.

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s