It was only about 3 months before I started bleeding again. To be honest, I wasn’t completely surprised – somehow when it had ended before I’d realised it probably wasn’t going to be the last time. I’d spent the last 3 months preparing myself for the inevitable – that it was going to come back and I would have to see a GP. The symptoms were also a bit different this time. Overall I had less bleeding but more diarrhoea and abdominal pain and was feeling exhausted. I also seemed to be losing weight, despite maintaining a pretty good appetite, and this time (sorry if this is a bit too much info) the blood seemed to actually be mixed into my stools. As a doctor, this is when you can be fairly sure that the bleeding has a more serious cause rather than simple haemorrhoids – if blood is mixed into the stool then you know that the bleed is occurring from higher up in the bowel. It also meant that whatever had been causing my symptoms had now moved or spread. Definitely not good.
I finally made an appointment to see my GP (much to J’s undisguised relief). I decided not to tell my doctor that I, too, was a doctor (I’ve found in the past that GPs have been quite rude when they’ve found this out) and just outlined my symptoms. I thought I’d hit the jackpot when he didn’t ask to do a rectal exam. He ordered a set of routine blood tests and asked me to phone back for the results in a week. He said he’d refer me to gastroenterology whether my bloods were normal or not (he too was suspecting IBD) but surprisingly didn’t want me to do a stool sample. (There’s a very good test called faecal calprotectin which can detect inflammation in the bowel by analysing your stool – actually doing the sample is pretty gross, but the result is invaluable in diagnosing IBD. Normally this is one of the baseline tests a GP would do when considering an IBD diagnosis). I found out later that the reason why he hadn’t done the faecal calprotectin test was because the local CCG (Clinical Commissioning Group – the people who decide how the NHS’s money gets spent) would only fund GPs in my area to order the test for patients who had abnormal blood results. I might go into this a bit more later on…
So I tried to get on with things in the meantime, although my symptoms were making it almost impossible. I was now working as an FY2 doctor in A&E (probably one of the worst rotas you can get as a junior doctor) and was really struggling to cope. I had a set of night shifts (10pm – 8am, 4 nights in a row). During the day my sleep tended to be rubbish anyway, but now the abdo pains and diarrhoea were waking me up every few hours. At work I was having to run off between patients to go to the toilet and frequently was doubled over with cramps. Work felt almost impossible, but I was scared that if I stopped or took time off I’d just never get back to it again.
A week passed and I called the GP for my blood results. He told me that they had all been normal and therefore “you cannot have IBD”. He said I’d most likely had diverticulitis, that I didn’t need to worry about it and that there was no need to refer me to a gastroenterologist (I think he assumed that my symptoms must have now stopped). I was pretty shocked. For starters, I was knew that what he’d told me wasn’t true. In ulcerative colitis (one of the two main types of IBD), for example, the severity of a flare-up is often defined by the Truelove and Witt criteria. It’s just a few basic parameters which help a doctor to define how bad a patient’s flare is (how many stools per day, how much blood, etc.) – I remember learning about it during medical school. According to one of the parameters, a patient falls into the severe category if their bloods are abnormal. If they are normal, depending on their other symptoms, they fall into either the mild or moderate categories, but still may very much be having a flare. Again, it is widely known that in Crohn’s disease (the other main form of IBD) patients’ bloods can remain completely normal during a flare. Therefore, saying that I could not have IBD due to my bloods being normal just wasn’t true.
Secondly, the idea that I had diverticulitis seemed pretty far-fetched. Diverticulitis is a condition which often affects older patients when little parts of the bowel wall form pouches (often this is caused or made worse by straining). Sometimes these little pouches can become a bit inflamed or infected, which can cause some diarrhoea and bleeding. It is a condition which is very unusual in young adults and normally would cause mild symptoms for a few days, before resolving. It certainly would not explain two previous episodes of rectal bleeding which lasted several months (as in my case).
Immediately I lost trust in him. At this point I considered telling him I was a doctor, but I decided against it – I just needed the referral. I told him that my bleeding was still continuing, that in fact it had got worse, and that I was having a lot of diarrhoea and abdo pain. He seemed quite irritated by this, as if he didn’t believe me. He said in that case he would have to refer me on, and the phone call ended. I was confused but relieved. I was finally going to be seen by the correct team, but I couldn’t believe the consultation I’d just had.
I think sometimes there’s a temptation as a doctor just to give a patient an answer, even if actually you’re not convinced it’s the right one. You think that’s what they’ve come to you for, and let’s be honest, if you give them an answer they’ll hopefully feel satisfied with the consultation and leave somewhat content. But after being on the other side, I can look back and honestly say that I would have been quite happy if he’d just said “I’m sorry, I don’t know what the cause of your symptoms is, but let’s do some tests to see if we can find out”. Having now worked in general practice for a few months, I frequently say this to patients and have never had a negative response back. Who knows, maybe when I’m a bit more experienced I won’t have to say it quite so often? I don’t think patients expect us to know the answers to everything, I think they just expect us to listen and to try to help.
I can also understand the temptation to make a sweeping statement to reassure – “your bloods are all normal so you cannot have IBD”. Unfortunately, however, I feel like the moment the patient goes home and googles it they’ve then lost all trust in the doctor, as happened in my case. There are very few conditions where tests always give us a definitive answer, and again, I’m only a junior at the moment, but I don’t think we should rely on them entirely when diagnosing.
I’ve recently had multiple consultations with a lady I’m investigating for rheumatoid arthritis (an auto-immune condition which often causes inflammation of the small joints). Her blood results came back completely normal, which I explained to her. I told her that the results make a diagnosis of rheumatoid arthritis considerably less likely, but that they didn’t rule it out, and therefore I still wanted to refer her to a specialist. Since then I’ve seen her multiple times, just to adjust her pain relief or to discuss her sick notes. 3 months on she still doesn’t have a definite diagnosis, but I got the impression that she appreciated me telling it to her straight. When I spoke to her on the phone the other day, she ended the call with “thank you so much for everything you’ve done for me, I really appreciate all of your help”. (I’m not really sure that I’ve done that much, but hey, at least she seemed happy).
I think this experience has made me think a lot about the effect what we say has on our patients. I’m definitely a lot more comfortable now admitting that I don’t know what is wrong with them, and also being honest about test results not always giving us a definite answer. I tend to just listen and try to treat them the way I’d like to be treated.*
*With one exception – if you present to me with bleeding from the back passage I will suggest a rectal exam. You can’t have it all.
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