Last week I had my Gastroenterology Appointment at the hospital. This was way over due because for unknown reasons I received two appointment cancellations by post and then each time I had to be put back on the waiting list. Yeah that’s right, no skipping that appointment queue even when you have already been at the top of the list when the hospital cancels both times! So after 8 months I finally head to my appointment. I won’t lie, I was slightly apprehensive as to date the gastro team haven’t been overly helpful or really seem that interested in helping me get to the bottom of my problems. That being said, I did my best to keep an open and optimistic mindset, because every new appointment is a new chance. I turned up in plenty of time even after the train running late and vomiting post bus ride! I sat prepped with my list of questions, current symptoms and updated medications list doing my usual waiting room chair jig as I listened for my name to be called. I went in with the nurse first for the usual weight and height monitoring, followed by my third pee since I got there due my annoyingly overactive bladder and current infection on top all the inflammation.
Eventually I was called in, but not by usual consultant. According to the receptionist this other doctor was speeding through his own list of patients, so he plucked me off the list to be seen next to lighten the other doctors load. I know all doctors have the same type of training initially, but over time their qualifications, specialities, experiences and opinions will differ and this makes every consultation with every doctor so individual. I am not always overly concerned if I don’t see the same doctor, I suppose it depends on the situation and which of my problems it is for! With regards to my gastro appointment, consistency of consultant really for me is key because the steps being made forward were already zero to none, so having to see a new consultant, who knew none of my history and extensive list of illness’, meant it likely wasn’t going to be the most productive of appointments anyway.
Even from the second I walked into his room he didn’t even make eye contact. I went to shake his hand and he just sat down and looked at me as if I had been magically transported to his room unexpectedly! I began with a brief history of what the previous consultant and I had discussed and the treatment he had put in place. I proceeded with an update of the concerning symptoms of my stomach and bowel, my recent test/treatment for Helicobacter Pylori (H.Pylori) and an overview of current medications and history. He looked baffled by everything I was saying and was half writing, half scrolling on the computer screen trying to get previous consultation notes up and once in a while looking up at me, like he had just remembered I was even there.
His first observation post chat, was that I was ‘complex’, with multiple illness’ and he proceeded to ask me; “Do you feel particularly stressed, because stress can have a great effect on gastro symptoms?” At this point I really wanted to roll my eyes and be like, here we go again, but I refrained! My response to his part question, part assumption, was that everyone has some stress in their life, it’s inevitable and personally I think it would be unrealistic if being chronically sick for the past 7 years hadn’t caused some stress in my life, but stress was not the reason for my stomach and bowel malfunction! I explained that I believe it is not what happens to us in life it is how we react to it that matters and that I try my best to approach my healing journey with positivity, hopefulness and the belief that I can make more steps to brighter health even with chronic illness. I knew exactly what he was getting at with that comment and that look of, is she really sick or just mentally struggling. This is not an uncommon scenario, especially with a doctor who really doesn’t have the first clue about you or your medical history, hence the need in this case to see the same doctor as before. It almost seems like it is easier for some doctors to blame the symptoms on the patient rather than for them to actually investigate further and come up with their own answers and the root cause. I’ve heard it before; “Just get yourself back to work and I’m sure in time you will feel fine” or “Is there something else in your life you are finding difficult that maybe could be make you feel like you are feeling sick?” Oh and trust me these are the far nicer ways it has been put to me over the years.
All too often, patients are being over-looked, dismissed and at times even told it is all in our heads’. I speak to so many others people who battle with chronic illness and unfortunately they all recall having similar experiences. I think it is actually really shameful, for we go to these professionals in our most vulnerable state, putting so much trust in them and their medical knowledge and so many times we are let down and given up on. There are of course many doctors who we can trust and who show empathy and willingness to help, but it seems more than often we are seen by those doctors who have forgotten that their responsibility is to the patient. Just because a doctor doesn’t understand someones illness it doesn’t mean they can just cover it up or try and convince a patient that they are creating these ailments upon themselves. This is one key reason for many of us it takes far too long to get a diagnosis. Not only is this unhelpful, but it is also time wasting, soul destroying and wholly unethical.
My previous gastro consultant had put me on a combination of pills to help my whole intestinal system which he thinks has nerve damage and as a consequence dysmotility. I also have two conditions; Ehlers Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS). Both of these conditions are medically known to have the potential to cause gastrointestinal symptoms, so this could be one possibility, but there is always something to be done, more tests, or further discussion with the remaining doctors on that team.
This was an appointment that just continued to go round in circles to literally nowhere. I was told to continue to carry on as I am, take the medicine I have already been prescribed and that I will be seen again in 6 months! I explained to him yet again that my stomach symptoms were unbearable, the pain, the constipation & diarrhoea, having to use enemas, the bloating, the nausea & vomiting and that I really didn’t feel it was OK to just continue in this way for another 6 months and risk being no better or even potentially getting worse. His response to this was literally a shrug of his shoulders! So at this point I just admitted temporary defeat. I realised it really wasn’t worth my energy to keep reiterating things, nor did I want to seem like I was begging for help from a human who clearly wasn’t interested in helping and he definitely didn’t care; so it is back to the drawing board for me. I will follow up with my GP for a new referral to a bigger hospital 80 miles up the road where my POTS doctor is and where I feel sure I will get better and more thorough help. I refuse to just be dished out medications that over two years hasn’t really help and then to be told to just live with symptoms which negatively impact my life further on a daily basis.
Remember you have a constitutional right as a patient to seek a second opinion if you are not happy with any aspect or your treatment. You also have the right to ‘Choose & Book‘ the hospital and even the consultant. At the end of the day as the patient you know your body better than anyone else. You also know the pain and symptoms you feel are not always just a side effect of stress, nor are they a figment of your imagination. I know that’s some doctors can make you feel like you have no hope and increase your self doubt, but they are just one opinion and their opinion is based on their lack of knowledge of you, the subject in this instance. For everyone who doesn’t understand or believe your fight, just leave them behind, for they don’t deserve to see you through to the finish line.
Be brave, stay strong and don’t give up your fight to have the best health possible.