This post has taken me a long time to write as, unfortunately, the draft I wrote a few weeks ago got wiped from my computer and I couldn’t get it back. I spent a long time on it and thought about giving up on this blog, as I couldn’t stand the thought of having to write it again. Instead, I have decided to carry on with it but just to skip that one (sorry, I just can’t write it again) and so I’m going to summarise that bit.
Pretty soon after that disastrous gastro appointment my symptoms started worsening again. I went to Brighton with my friends and had a big boozy night out, and two days later was having bleeding from the back passage again. I called the phone number I’d been given by the gastro consultant (for his secretary) and reported that I was bleeding again. She was lovely (much in contrast to the consultant) and somehow managed to schedule me in for a flexible sigmoidoscopy (a camera which goes into the first part of the large bowel) the following day. This involved a very embarrassing trip to two different pharmacies during my lunch break to request a phosphate enema, required to be used to prepare the bowel before the procedure. The first pharmacy didn’t have them in stock and altogether I had to ask four times for the medication, whilst desperately trying to avoid being recognised by any patients who had ventured into town that day.
The following day I did my morning clinic (I was working at a GP surgery at the time), which took a fair bit longer given that I had to run to the toilet between every patient, and rushed home to give myself the enema. Compared to doing the colonoscopy prep, this was a piece of cake. Again, I set off for the hospital, managing to make it to the endoscopy clinic without bumping into any colleagues, much to my relief.
I went through the pre-procedure checks once more and was asked by the health care assistant why I was having another scope. I told her that it was because I was bleeding and she very sweetly told me not to worry, that it would probably be fine. I smiled back, my stomach in knots, knowing she was wrong.
This time the wait was long – nearly two hours sitting in an airless room with several women anxiously making small talk and complaining about the waiting times. All were considerably older than me (I gathered that they’d been brought in as a result of the bowel screening test offered when you turn 60), and all clearly wondering what I was doing there. One of them complained that she’d have to ring her husband to advise him to go home and pick her up later, or he’d be waiting for ages. Another could not understand how they could possibly be running so far behind. I smirked a little , but managed to say nothing. These ladies clearly had no idea what went on here – the fact that if an upper GI haemorrhage had come through A&E this morning, the patient would have been rushed to endoscopy to stop the bleed and hopefully save their life, almost certainly delaying the surgeon’s afternoon list while the team grabbed a quick lunch. But heaven forbid that this lady’s husband should have to pick her up a little later.
I kept silent, praying that none of them would try to strike up a conversation with me. The last thing I needed was them realising that I was one of these people who’d delayed their evenings so terribly. Sitting there I felt nauseous – not just from the waves of abdominal pain I was now having but also from the knowledge that these women would most likely go back home to their families this evening (albeit rather late) whilst chances were that, as far as I was concerned, my life would have changed considerably. I knew I was being harsh, and that they were just scared patients after all, but I couldn’t help it. No amount of medical school or practice could alleviate my fear. I needed them to find the problem, but prayed it would be small. Just a little patch of mild inflammation with a small bleed in an otherwise healthy bowel. I needed them to find the issue (which I was now convinced I had), so that I could finally get the treatment I needed, but hoped to god that it wasn’t that bad.
At long last I was called into the procedure room. In all my anxiety I had totally forgotten the issue of which consultant might be doing my scope and if I’d know them (my worst fear). The surgeon turned out to be Mr W, a consultant I knew (not very well, to be fair) but who had always come across as kind and professional. Okay, not ideal but could be worse. I was walked into the room by another health care assistant and helped onto the bed.
Mr W turned to say hello, and stopped. “I know you from somewhere… You were one of my junior doctors, weren’t you?” Embarrassed, I confirmed his suspicions, and also that I was having rectal bleeding. This time I opted to go without the sedation (the camera would only be going into the first part of the bowel, after all, and if I had sedation I wouldn’t be able to work the next day). The camera went in and I held my breath, terrified for what I was going to see.
The first thing I noted was that it looked okay. I was surprised (but a little relieved). Up until this point I had thought it was most likely that I had Ulcerative Colitis (one of the two main types of IBD) which affects the first part of the bowel around 97% of the time, yet the first part of my bowel looked fine. Still, I could just be one of the 3% (I was not ready to accept that I might have the other main type of IBD – Crohn’s Disease). The pain was already pretty bad, and I was starting to regret not having gone straight for the sedation. Still, I tried to put on a brave face (it was my old boss doing the procedure, after all) while the scope continued. He reassured me that so far everything looked fine and asked if I was sure the bleeding hadn’t just been ‘menstruation’. (I was mortified by this question – I had a tampon in at the time and, given the intimacy of the procedure, was sure he must have noticed). “No”, I replied, “The bleeding has been going on for several months – I’m pretty sure it isn’t menstruation”. The nurse (female, probably in her 50’s) looked at me pointedly – clearly she also felt that a young, female junior doctor would know the difference between a rectal bleed and her period too.
As I answered, Mr W seemed no longer to be paying attention to me and was staring at the screen. I whipped my head around but saw nothing, other than his forehead wrinkled in concentration and a look of concern on his face. He told me that he’d seen a small amount of blood and was trying to see where it had come from. He definitely wasn’t suggesting that it was ‘menstruation’ anymore.
The scope continued (the conversation had now largely stopped), but was becoming more painful. Now the nurse and health care assistant were also watching the screen with interest. The surgeon rounded a corner of the bowel with the camera and stopped. He’d found what he was looking for.
What appeared could only be described as a bloody mess. I couldn’t breathe. All I could do was stare at the screen in horror. I’d seen photos of IBD patients’ colonoscopies and I’d seen the varying degrees of inflammation. This was bad. It was bad and it filled the whole screen.
The room was silent. I looked at the surgeon, desperately willing him to look at me or say something; to confirm or deny my fears, but he wouldn’t. I looked at the nurse in front of me – she wouldn’t meet my eye. And at that point I knew it was as bad as I thought it was and that everyone else in the room knew it was bad and that they knew that I knew and that there was nothing comforting they could say to me.
I burst into tears, and the last shred of my dignity was lost. As far as I was concerned, my world had just ended in front of my eyes and not only had my previous boss just stuck a camera in my rectum but now I was crying in front of him, a nurse and a healthcare assistant. I honestly didn’t think it could get any worse.
I think the nurse took my hand at this point, but I can’t really remember. All I remember was Mr W putting the scope down and announcing that I was clearly in pain and needed sedation. We both knew that that wasn’t the reason that I was crying, but he was trying to dull the experience for me, make what was one of the worst days of my life that bit more bearable. Had it been any other male surgeon, the cynical part of me would have suspected that he just couldn’t cope with a hysterical young woman on his table. This time, however, I knew he was doing me a kindness.
I started to apologise profusely – I knew that sedation was going to delay the procedure, that it must nearly be 5 o clock and that they were all going to end up going home late, unpaid (there’s no such thing as overtime in the NHS) because of me. I choked all of this out in an abundance of tears, and Mr W touched my arm gently. He told me that it wasn’t true, that none of that stuff mattered and that everything was going to be fine. I was so grateful I nearly cried all over again.
He attempted to put the cannula in my arm (needed for sedation) and missed the vein. Embarrassed, he tried to flush it with saline (which didn’t work) and had to remove it. “I can’t believe I just missed a cannula on one of my junior doctors” he muttered, and I couldn’t help but laugh at the surrealism of the situation.
He sited the second cannula successfully, injected the sedation and a small wave of calm came over me. I was determined not to cry anymore, I just had to get through this. He again advanced the camera into the diseased segment of bowel and the area of inflammation was brought into view once more. He continued through it as I marvelled in horror at the state of it, although at least I managed not to cry this time. He asked the health care assistant to go and get one of the senior gastroenterologists (not the one I’d seen previously, thank god), who happened to be in the department.
Dr C was brought in, and I was introduced to him as one of the hospital’s junior doctors. He greeted me with a mixture of awkwardness and sympathy (I was glad that we’d never met before) and proceeded to study the parts of the screen Mr W pointed out, whilst they spoke quietly about what they thought they meant, and which sections Mr W needed to photograph. He advised Mr W take another 12 biopsies (now 24 in total within 6 weeks). As casually as I could (there was no way I was going to break down in front of another consultant) I asked what I needed to. “So which is it then – UC or Crohn’s?” He muttered something non-definitive and advised that we would have to wait for the biopsies. Another conversation took place between the surgeon and the gastroenterologist and it was decided that they wouldn’t prescribe me steroids for now (a common treatment for flare-ups of IBD) but would send me home with mesalazine (a drug which is often less effective, more frequently used in ulcerative colitis). The nurse looked me in the eye now – she was giving me the kind of sad, maternal look that made me suspect she had kids about my age. “It’s okay”, I said, “I already knew”.
The scope eventually ended, to my shocked relief, and I was wheeled into recovery. I lay there wide awake, trying to get my head around what had just happened. I had IBD. I was going to need medications. How was I going to tell J? How was I going to tell my parents? The health care assistant came round and took my blood pressure and heart rate twice. She advised me to see my GP as my heart rate was ‘a bit fast’. I nearly laughed out loud – of course my heart rate was fast, I was totally panicked. What the hell was I going to do?!
The nurse from the scope came back and suggested I get my phone out to text J – now that I’d had sedation I wouldn’t be able to drive home, so I needed him to pick me up. I didn’t say anything to him about what they’d discovered, knowing that would require a conversation face-to-face. The Sister (nurse in charge) walked by, commenting loudly about how young people these days are addicted to their phones. “Actually, Sister, this is one of our doctors you’re talking about who is trying to contact her partner to pick her up”, the nurse snapped. The Sister looked awkward, greeting me as she turned to leave. I was surprised but touched that the nurse had stood up for me like that.
The nurse retreated back to the scope room, and as I lay in recovery I could hear the team talking through the open door. “Well that was an unexpected end to the day…” Mr W said. Then some more hushed mutterings. “She told me she knew…” the nurse ushered, “She said that she knew.” I didn’t hear what they said next, as I tried to stop the tears once again.
IBDoctor 