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Colonoscopy.24/6/2024 Do you remember how I spent time in a local hospital in March with pain that was initially suspected to be caused by a kidney stone? It was decided that further investigation was necessary. Gastroenterology was to be the first port of call. I anticipated being brushed off with irritable bowel syndrome or something like that, caused by stress and lifestyle, only years later to find another cause and the recognition and approach that comes with it. It felt important also to be seen by someone who is aware, or at least wants to be aware, of my already diagnosed conditions, and understands the possible interplay of the various factors. I used to know such a specialist. He moved to a university hospital further away, where he now works as professor. After several conversations with my loved ones and with the professionals who support me medically and socially, it was decided to make an appointment with him, if possible. There were consultations available earlier with other gastroenterologists, there and closeby. I was told that to see the professor himself, I would have to wait until May 27th. I chose to endure the severe pain until after our trip to the UK for the launch of Recognise ME, which was scheduled for May 15th in Leeds. The fortnight we spent there proved how well my husband and I are attuned to each other in navigating my body’s antics. With the generous support of friends it turned into a wonderful time. We would return home late in the evening on Saturday the 25th. Jean could go to work on Monday, May 27th, while I would get to the hospital by public transport. All kinds of unrelated issues thwarted our plans, things that were difficult to foresee and that belong in other people’s stories. Still, I made it on my own, by train and bus. Someone working under the professor's supervision recommended a colonoscopy to ensure that everything was fine and, as predicted, pin the pain on a functional problem. I asked him about his knowledge of EDS, and he seemed to know something, in relation to the digestive system. That helped. When I suggested he might check with my endocrinologist, in the same hospital, whether and how my cortisol intake should be adjusted for this procedure, he thought it would be better to make an appointment with the anaesthetist. He handed me the necessary paperwork. As I continued to refer to the original agreement, after a long wait, he accompanied me to the counter to establish that the follow-up would actually be carried out by the professor. It took determination and patience to finally speak to the man himself. He went over everything again in the presence of this junior, from a broader perspective based on years of experience and acquired knowledge. The plan was confirmed. Trying to arrange the anaesthetist appointment, I was sent from pillar to post. Eventually, I was given a questionnaire, several pages thick. Based on my replies it would be decided whether such a consultation was necessary. If so, I would be contacted. The only way I could manage to complete this task, after the day I had had, was by arranging for Jean to pick me up by car after work. We were both at the end of our tether. Last week I was expected in the day hospital. The day before, I received a phone call to ask how the preparation for the colonoscopy was progressing and if I had any questions. I was waiting for the bus after having my intensely painful neck treated. In other circumstances, I might have thought to ask about the cortisol. I decided for myself to stick to my usual dose of dexamethasone. I would be in good hands in this hospital, my endocrinological file is based there. The nurses were friendly and caring. They confirmed that the answers I had given in the booklet had been entered into the computer. When reading it out, they pointed out explicitly that gluten and cow's milk cause an intolerance rather than an allergy. In my case that is correct, although it could have been different. Once I was admitted, I posted a photo of myself in a surgical gown on my Facebook page as part of an ongoing effort to make barely visible conditions seen. I added the words: ‘It's OK. It's only a colonoscopy, under anaesthesia.’ When someone wrote: ‘I hope it goes well and stay assertive there,’ and ‘Don't let yourself be gaslit,’ I replied: ‘So far I have always been treated well here. Hopefully it stays that way.’ After the preparation and some waiting, it was my turn. The same doctor who had originally replaced the professor was on hand. He had to check with his team which procedure I was there for. I found this somewhat perturbing. As far as I was concerned he might as well perform a gastroscopy, though, while I was anaesthetised. Sooner or later it will be called for again, anyway. He stuck to the original plan. When adrenal insufficiency was emphasised again (I insisted on informing everyone who said anything to me - as a patient you learn over time), the anaesthesiologist was taken aback. After some discussion she discovered in the computer that a completed questionnaire had indeed been submitted. That information would have to do. Much later than I expected, I woke up groaning. ‘Madam, are you in pain?’ I realised that was indeed the case and confirmed. ‘Are you nauseous?’ I was. I also mentioned that I felt like I needed some extra cortisol, and again relayed my diagnosis and mentioned the professor of endocrinology in the same hospital, who could confirm this. ‘I have to ask the doctor,’ she replied softly, ‘the professors have gone home.’ The pain relief came, as did something to treat the nausea. ‘I can only administer what the doctor agrees to.’ My request for cortisol had apparently been rejected, because my parameters were all stable. My blood pressure, heart rate, etc. were exactly the same when it came to pain and nausea. If I had complained of itching, I would almost certainly have been given something to deal with it. These are sensations that, I assume, every doctor and nurse has experienced and can therefore imagine. By contrast, only patients with adrenal insufficiency know what a shortage of cortisol feels like. Much as Eskimos have different words to specify types of snow, where we only have one, our language lacks the vocabulary to express the sensations associated with something too small a group ever lives through. And so, parameters are conclusive, over and above the account of the seasoned patient. I was just sharp enough to explain that there is a long distance between feeling optimal and a situation that is alarming, and therefore visible in the measurements. For the first time in my life in this kind of setting, after everything I've been through, I heard myself say: ‘It's my body!’ I was about to leave. In the meantime, someone came to ask me if I preferred a ham sandwich or one with cheese. ‘Are they gluten-free?’ I asked. ‘No,’ was the answer, ‘we can give you yoghourt.’ ‘Without cow's milk?’ Negative. This happens often. It is usually followed by a mild state of panic during which solutions are considered. They will find something eventually. In this case that happened very quickly and peacefully: ‘We can get you some water.’ When I later asked if someone had perhaps been sent to a well to tap it, it appeared to have slipped their minds. I was soon given a half-filled paper cup. ‘Madam, you must stay. The doctor needs to speak to you,’ was followed by, ‘Ah, he's here!’ I had little choice but to listen to what he had to say. A large amount of polyps had been found. He seemed impressed. He had taken a few out, larger ones. The procedure was to be repeated within 6 to 12 months, after consultation with him. The fact that I already have an appointment to discuss the results with my preferred professor, which he himself ensured, appeared to escape his mind. That surprised the nurse, who went to confirm whether my statement was reliable. I also tried to explain to him the difference between a lack of cortisol and an alarming situation. He asked if I wanted methylprednisolone. ‘No. Cortisol, or hydrocortisone, whatever you like to call it.’ He had apparently misunderstood that too. If medrol was the only option, it would offer a solution, but why start with something so strong? ‘Do you have that with you?’ he asked. When I confirmed I did, he shrugged his shoulders. He seemed to swallow the words, ‘Then what's the problem? You're leaving anyway.’ Let's face it, I've been through enough anaesthetics to know how I'm supposed to wake up from them. The distress I experienced could easily have been avoided, read: treated. That would require some knowledge about either the condition or my medical history, preferably both. One call to the endocrinology department could have saved the trouble of doing that research. If for whatever reason, even that was too much to ask, there were only two options left: either trust the patient with more than 10 years experience of living with this diagnosis, and more than 52 years of experience living in her body; or leave her to suffer. He chose the latter. Had I been more alert, which might have been the case if this had been handled correctly, I probably would have asked a few more questions. All I managed was to express my relief that a cause for my pain had been found. ‘Polyps don't hurt,’ he said dryly. Later I learned that that too was wrong. Something sprang to mind that did need to be clarified. ‘Then, why does it need to be followed up further?’ ‘Because it could turn into cancer,’ was his equally cold reply. I was left guessing whether what he had cut out was going to be examined, whether this multitude of polyps indicated something out of the ordinary, whether this occured more often in EDS patients than others, or what the further course might be. Hopefully the professor will enlighten me in August. I try to trust that I will get to speak to him as agreed. Maybe my family doctor can tell me more in the meantime. Otherwise I'll just have to live with that threat hanging over me. I have been down this road several times before. So far I have survived. The big difference in me is that instead of starting to doubt my own integrity and mental health, I see who made the mistakes here. Individually they may have been relatively minor, but together they undermine the otherwise excellent image and reputation of this hospital. The damage caused by the disappointment, the loss of confidence, the accompanying anger and some bitterness, the doubt and fear, well, I can contact my psychologist about that.
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