Stupid girl: Gastro side quest …

Hey! Hey!

If you are still with me, congratulations on unlocking a side quest venture into a different specialty! If you are new here, first of all, where have you been? Second of all, welcome! I’m Lucy, a 28-year-old attempting primary school teacher with a broken brain. Too much has occurred in the past 19 months to summarise, so if you are new, go read the previous posts to catch up!

Getting down to business …

This particular side quest in question involves an (attempted) step into Gastroenterology. Now, having lost my mom whilst she was under the gastro specialty, I must confess my opinion of them is pretty low.

But this is a neurological condition I hear you thinking. Why is she side questing to gastro?!

Very good question, and yes, you are correct, my headache disorder is in fact a neurological condition. However, one of the worst, and most debilitating, symptoms I experience is severe, chronic nausea. Now, I am not talking feeling a little bit sick. I’m talking feeling like you are literally seconds away from throwing up 24/7. So, it goes without saying that the last thing you want to do when feeling nauseous on this scale is sit down and eat a 3 course meal!

An anti-emetics expert …

Over the course of now 19 months, I have been prescribed and have taken several different oral anti-emetics in the form of cyclizine, ondansetrone, metaclopramide, and prochlorperazine. Each form of tablet worked initially, but over time the effectiveness wore off and eventually they stopped working altogether. It was when a particular tablet stopped working that it was then changed.

Unfortunately, after approximately 14 months of taking anti-emetics, my body simply became resistant to all forms of oral tablets. During my inpatient stints, IV anti-sickness was incredibly effective, but as an outpatient this was not an option.

Unsurprisingly, the knock on effect of not eating much as a result of the sickness was weight loss. I was, and always have been, naturally petite with a very slim build. However, I was very aware of how rapidly I was beginning to lose weight.

Initially, we made an appointment with the GP who told me I was too high risk to be prescribe oral nutritional supplements (to this day we still don’t know what I was high risk of), and that I would require an urgent 2 week dietitian referral.

2 months later …

Yep, you did read that right. No, it is not a typo. My urgent 2 week referral took 2 months to amount to an appointment. The appointment in question was a telephone consultation and believe me when I say it was not worth the wait! By this point, my weight had dropped below 50kg, putting my BMI somewhere around 17.8 (anything below 18.5 is underweight). I also was still no further forward in terms of treatment for my CSF Leak.

The dietitian called somewhere around midday and I explained the circumstances to why my calorie intake was so low along with everything I was doing to try and get calories inside my body. I also explained that I was very aware that I my body was beginning to show signs of malnutrition …

• Becoming gradually more and more exhausted despite minimal actual exertion.
• I was feeling generally weaker and ached from head to toe.
• I was experiencing increased bouts of dizziness.
• My hair was becoming brittle and falling out in fairly thick clumps.
• I had unbelievably dry skin that was breaking out in spots more than usual.
• My periods were miraculously light after always being like some sort of monthly flood (apologies if that’s TMI …)

All of which were additional symptoms I did not need to be dealing with on top of the CSF Leak I was already battling!

Cue the complex label …

In fairness to the dietitian on the phone, my case was probably beyond anything she had ever dealt with before, but I don’t think that excuses her comments. I’ve made a list below of just some of the things she said to me …

• You are not eating much (I know I’m not, I told her I’m not!) …
• You need to eat more (I also know this) …
• If you are having something to eat, just double the portion size (If I could do that, I wouldn’t need your input!) …
• It’s about mind over matter. Have you tried techniques to encourage your body to eat more? (I mean if I could talk my brain back into my skull it would never have fallen out in the first place!) …

I did not need to wait 2 months to be told these things. In fact, these are all things I told the GP before she put in the initial, urgent referral after refusing to prescribe the oral nutritional supplements. Eventually, this dietitian agreed to prescribe a powdered oral nutritional supplement which she made quite clear was the thinnest of them available**.

**I had explained that thick liquids like milkshakes also contributed to the nausea and were difficult for me to consume and tolerate.

That was the end of the consultation …

A couple of weeks later …

My prescription arrived at the pharmacy where I collected 360 powdered sachets that were supposedly going to be thin enough for my body to tolerate. Already feeling sick, I made one up and let’s just say the thickness of the liquid was questionable. I stood staring at this powder and water combination that shared a thickness with a McDonald’s milkshake regardless of how much additional water I incorporated.

Determined to persevere, I began an attempt to down the drink in one. This attempt lasted approximately 0.2 seconds before I began retching. Not only was it thicker than the dietitian had assured me, the taste was also disgusting and absolutely not the strawberry flavour labelled on the box!

I probably should point out that there was only 150ml in the glass so not exactly record breaking amounts of liquid! Anyway, this 150ml took me exactly 45 minutes to finish alongside heaving every few minutes and even bringing back up the last couple of mouthfuls (again, I apologise if that’s TMI).

To say the consumption of this liquid had the opposite to desired effects would probably be a marginal understatement. As the liquid solidified in my stomach, I began to feel more and more nauseated which meant any snacks I may have consumed in the afternoon were abandoned. As a result, my calorie intake for the day actually ended lower than it would have been without the supplements.

Six weeks later …

My pain levels were high, but my weight loss was higher. Sorry, shouldn’t joke, but you know, laughing through the trauma! I was scheduled for a follow up telephone appointment which happened to be with a different dietitian to the vaguely unhelpful one I conferred with last time.

Credit where credit is due, this dietitian was much more competent! She listened to what was wrong, was very interested in the issues I had encountered with certain neurology teams in various parts of the country, and didn’t patronise me with unhelpful advise I had already tried.

However, to my surprise, she explained that there were ONS drinks I could try that were much thinner in consistency than what I was previously prescribed! Slightly irritated at this revelation, I allowed her to continue explaining that she would send a sample of these to me rather than a full prescription because if they are not suitable then we wouldn’t be wasting large amounts of supplement drinks. This all seemed very sensible and promising, but I couldn’t stop myself from asking what would happen if I didn’t tolerate these drinks …

Seeking confirmation rather than understanding …

Like with the neurologist, this was one of those questions that I already knew the answer to, but was asking it more for confirmation than education. As I expected, the answer was simple. Lack of success with these juice based ONS drinks would mean the next step would be an NG tube … For anybody who doesn’t know what an NG tube is, it’s a thin tube that is inserted via the nasal passage, down the back of the throat and into the stomach.

The dietitian explained that should we come to that her recommendation would be having one placed in the short term until neuro could fix my spine entirely, or at least reduce the severity of my symptoms. The NG tube would be used to drip feed me overnight for the duration of 10-12 hours.

The idea was that it would be a slow enough rate to not trigger the nausea that is currently preventing me from eating “normal” meals. However, she continued to explain that this would have to be accepted by the dietitian and gastro MDT meeting at the hospital before it would be given the go ahead to be placed as a day case procedure and then community teams visit to ensure it is all being used correctly.

A further two weeks later …

After 2 weeks of trying desperately hard with the juice based supplement drinks, my body just could not cope with them. Whilst they were slightly easier to drink, the combination of the length of time they were taking to finish and how full they left me feeling meant that I had gained no weight at all. This meant that she would be contacting the hospital and recommending the placement of an NG tube.

Now, it goes without saying this dietitian had been, and continues to be, absolutely brilliant. She is so supportive of my situation and more concerned about my lack of intake than anybody else seems to be. However, following our consultation where she confirmed she would be requesting the placement of an NG tube, she called me back within a minutes of speaking to the hospital …

Another ego to battle with …

Reluctantly, and almost nervously, she explained that there had been some push back from the gastro department at the hospital. Firstly, their response was to blame my nausea on a painkiller I had taken once literally 12 months ago. Secondly, they focused on the fact IV anti-sickness medication worked, and recommended I be admitted indefinitely to hospital until they fix my leaky spine as they can then continue to administer IV anti-sickness. I mean I cannot process the appropriate words to explain what a ridiculous suggestion that was!!

Reading between the lines, and using my best inference skills, it was pretty clear cut to me that they didn’t believe my symptoms, my situation or the severity of the difficulties I am having. I don’t think I have it in me to fight another battle of “please believe me” with a specialist who has clearly seen my age, my gender, and my weight and jumped straight to the assumption my symptoms are “self-inflicted” and I just “want an NG tube”.

Understandably caught in the middle, the dietitian tried to reassure me that if I could get a letter from one of my neurologists stating the nausea is a direct result of my CSF Leak and headache disorders then they wouldn’t have many grounds to push back again. However, without that her hands become tied and there is very little she can do …

Dissecting and debriefing …

Now, someone please correct me if I am wrong, but I am finding it quite hard to see what the point of me being sent to a dietitian was if the hospital team are going to straight up dismiss and disregard the recommendations of someone who actually knows the case really well. We have wasted months by this stage under the dietitian and trying various food first approaches to be then told her opinion doesn’t count for anything?

I also cannot get my head around this ideas among medical professionals (or at least the medical professionals I have encountered) that you can be underweight by BMI, experiencing symptoms of malnutrition, but regarded as not underweight enough to warrant intervention or support. Like I genuinely had one GP tell me to “come back to them” when I am more underweight.

It is just so frustrating because they could intervene now and prevent this from spiralling further into a major health scenario, but instead everyone is happy to sit back and watch until I get worse.

It could only happen to me!

X O X O,

Your favourite headache!

Stupid girl, I should have known, I should have known ~ White horse, Taylor Swift, Fearless