What a year! When I wasn’t in control of my mind and body
I suffer with Gastroesophageal reflux and it sucks!
Now before we get into my relationship with this aggressive, nasty, ill feeling, breath stealing disease. Let's answer the question your all thinking…What is Acid reflux ? The medical name is Gastroesophageal reflux disease (Gerd) and this occurs when stomach acid frequently flows back into the tube connecting your mouth and stomach (oesophagus). Acid reflux can irritate the lining of your oesophagus and many people experience acid reflux from time to time, or in my case everyday! Anyway Gerd is “mild” … yeah sure, thats the word we will go with “mild” and acid reflux occurs at least twice a week, or moderate to severe acid reflux that occurs at least once a week. Most people can manage the discomfort of Gerd with lifestyle changes and over-the-counter medications. But some people with Gerd may need stronger medications or even surgery to ease symptoms and thats where I was.
So as you can see I have a difficult relationship with my body and I was diagnosed with Acid reflux when I was younger. See, at first it would occur every now and again, oh how I didn’t realise they were the glory days, with occurrences only lasting no more that a few minutes. However it started to get worst as time went on. Sometimes lasting a few hours or a day, and unfortunately, there wasn’t much investigating done into my acid reflux. September 2021 was when the battle against my acid reflux really begun. I found myself laying in bed with intense breathing issues, by the time day number 5 of this torture had hit, I knew something wasn’t right. My chest felt so tight, I though I was having a heart attack. I couldn’t eat, drink or sleep and my breathing was so bad that if I had put a black suit, Cape and a lightsaber on I could have been mistaken for Darth Vader ‘Haha'. Anyway, it got so severe I ended up calling 111 and after speaking to them they decided that the best option was to send out paramedics. They found it interesting that I had been diagnosed with Acid Reflux but no further investigations were made. They said especially considering that I am very young to have this condition. I was unaware of this and not being on any medication to help, as I would say ‘keep the beast asleep’. They took me to the hospital to get checked out and after over 4 hours waiting, I was seen. I spoke to a very kind and helpful doctor about going on medication to see if that helps. I was so relieved that I had a solution… or at least thats what I thought.
Roughly 2 months into being on the medication I felt it wasn’t really working anymore, but I considered it may need more time. Then on January 19th or as I title that day as “The beginning of my hell”. ‘Oh yes you can guessed it’, it attacked again. But this time it came at me with everything it got. This War went on for … weeks straight. Some days/weeks were worst than others but it didn’t shy away from giving me constant breathing problems, strong nauseous feelings, and some great new symptoms of actually being sick and some seriously painful heart burn (I imagine you can hear the delight and sarcasm in my voice). Having the absolute pleasure of a pain I could only describe as if someone was strangling me whilst piercing my chest with a flamed arrow. And for anyone thinking I’m being dramatic, trust me, you are mistaken. After 7 weeks of unclear answers, health test and scan results, Oxygen levels coming back great and clueless doctors. I decided to go private and I was referred to a specialist. After having my consultation appointment my doctor told me that some of my symptoms are classic for acid reflux however, some of my symptoms are not, which lead the conversation to me having to have a endoscopy. Whats that ? Simply put, I will have a camera put down my throat in to my stomach so that they can see whats going on and hopefully get some results. I was terrified, safe to say, the procedure was straight forward and had full trust in the doctor. But the thought of the procedure left me feeling quite anxious. By this point I was mentally and physical exhausted and within the first 7 weeks I probably had at least 3 emotional, tearful breakdowns because you know, ‘sometimes you just gotta cry right!’
I got my date! March 23rd, relieved to finally feel like I was getting somewhere but was still extremely nervous of the procedure. Ok, so procedure day thoughts? ‘Please give me answers’, ‘Let the results be successful’, My feelings? Extremely nervous and anxious but tried to stay calm. As the days turned to hours, I started to get extremely nervous about my endoscopy and from the moment I walked into the hospital I could feel my heart racing and palms sweating. But I took deep breaths and calmed myself. After being shown to my room and answering questions about my health, I was taken down to the operating room, I was so nervous however, what made this situation better was the kind nurses I had, all so kind, calm and friendly. Making general conversation with me as a distraction to all the nerves I was feeling. Once I was injected with the anaesthetic, I remembered absolutely nothing until I woke up. My throat was extremely dry and sore and I was feeling super woozy, which was to be expected. I was then taken back to my room and was served some food and water; I had some toast, a pain au chocolate with some water and a glass of apple juice, after a couple of hours I was well enough to leave the hospital and head home to rest.
Days later I received an email for my next hospital appointment, April 21st. This felt so far away, the day’s between then and now were tiring, uncomfortable and left me feeling mentally and physically drained as usual. The day finally arrived and as I headed into the hospital, I had this gut feeling that the results wasn’t going to be great. Unfortunately the happy news I was hoping for didn’t happen. My doctor went through the results of my endoscopy showing a picture of my oesophagus with a burnt line across part of it which indicates the acid burning, 'Just excellent I know’. After going through my results we spoke about my options, which lead to the conversion getting worst when he decided he would like me to have a PH levels test which doesn’t sound bad right? Wrong! Simply put I had to have a tube inserted through my nose and down my throat. This was to be kept in for 24 hours with a monitor that hung round me like a bag, to record readings on my PH levels. Depending on how the results turn out, I may have to have surgery. However, until I had the PH levels test done, I was put on temporary medication to try and mild the continuous belching of acid I was experiencing and to try and decrease some of the acid in my system.
2 TEST ? NOT 1 BUT 2 ! Ok, so worst got worser when I called up to make my appointments for my ph levels test. I was told it was two test not one, 'Like are you kidding me, I had to do it twice!’ My level of nervousness went from really nervous to no way, no way I cannot do this, no way!
Test one: The first test took place in Tunbridge where I had a tube put through my nose and down my throat for around 15 minutes, whilst awake may I add. Luckily I had a very kind doctor, she was very understanding of how nervous I was and was very patient and friendly, which definitely help the process. Whilst I had the tube in, she done a few test to take some readings, which included me getting to sip water, syringing salt water in my mouth; ‘Which was not a pleasant taste’ and getting me to eat a blueberry breakfast bar to see how my body reacts to them. The word uncomfortable is all I could think whilst it was in, and the weird and very awful feeling of the bit that was in my throat called “The cube” was the worst. A feeling of something stuck in my throat and not being able to remove it was extremely irritating. But the relief after removing it was like the weight on my shoulders had been removed.
Test two: Now the set up for this was the same for the second test however after it was inserted, I had to keep it in for 24 hours. I honestly didn’t think I was going to be able to do it, fighting the urge to rip it out was extremely difficult, Eating and drinking was impossible with every swallow the pain getting more painful. By the evening I was so hungry, so thirsty and so tired, sleeping was difficult and by the morning I was even more exhausted then the night before. Finally 10:30am hit and I was allowed to remove the tube, however, I couldn’t do it myself so I got my sister Charley todo it; Same as the first test as the tube was removed quickly, it hurt and took by breath away but again as soon as the cube was removed the relief soon followed. The rest of the day consisted of me eating, drinking and sleeping, catching up on all of the things we take for granted.
I swallow too much air ! I know what ya thinking, ‘What are you on about Alex?’ Well, I received my results on the 8th June and there is only one word I could use, boggled! I was absolutely baffled with what the doctor told me. Looking at the results from my last test, he said it shows that I’m swallowing a lot of air. I really don’t know how else to explain it ‘haha’ and honestly I felt stupid. Somehow I subconsciously have been breathing in too much air! This would be the reasoning behind the constant belching, chest pain and struggle to breath. However, he did also tell me I do have a little bit of acid reflux, which may have been causing slight pain, but the main cause was Alex can’t stop swallowing air. ‘It's ok to laugh’ because, when it sounds ridiculous nevertheless this is an actual thing. So whats the solution and ‘cause get this’, ya gonna probably giggle again, I have to go to a physio therapist to be given breathing exercises and taught how to breath correctly.
2 MONTHS LATER ! … after continuous phone calls with my doctors and trips to both the doctors in my area they finally found my referral letter. Which led me to another trip to the gut clinic in September to go through some my breathing exercises and my ph level results in a bit more depth. The doctor was super helpful and advised me that he thinks there is definitely acid reflux but he also thought that there was more to it than that. As some symptom didn’t quite add up. I then decided the best thing to do was switch to a new doctor, as I really didn’t feel I wasn’t getting the help I needed. By October all I could think was how am I still dealing with this. I’m exhausted, I’m fed up of feeling sick, wanting to cry, feeling depressed and very overwhelmed with it all. I was very pleased with my new doctor as he was more helpful and informative of all that was going on. He did clarify that I do have acid reflux but he agreed it was something else that was the main cause. After looking through all my medical notes, He decided he wanted me to have a few more test done to rule out other potential problems. The next procedure I had was another camera, but this time it was up my bum. Which to be honest, I think is pretty self explanatory right so I don’t need to go in to the details of that. However, I was awake for this one and to be honest, it wasn’t as bad as it sounds, there was some pressure and I did have some anaesthetic which helped. Things were a little blurry, but being awake allowed me to watch my insides on the screen. ‘This was a little weird but also kinda fascinating. Amazingly all the result come back ok. The worst bit was actually having to drink the thick gross disgusting liquid a few hours before to clear me out. The following morning was my MRI scans on my lower intestine, which was where I had to lay in the MRI machine and have some scans taken. It took longer than I expected because the liquid I had to have wasn’t quite working which led me to walking up and down the corridor for about half an hour before I could go back in the machine to try again. I can happily report the results came back all ok.
At the end of October I had a phone call from my doctor to talk about my next step. He wanted to make sure that there were no problems in my lungs, causing my struggles to breath and to do that he referred me to a chest specialist. However, This was where things got a little tedious and frustrating because the entirety of November and December I was getting no communication from my doctors sectary. I called and email numerous times and nothing! I was very disappointed, and finally after figuring out who else I could contact, I saw the chest specialist a few days before Christmas Eve. I had to do a few tests at my doctors appointment with the specialist, including an examination of my belly, listening to my breathing and taking a breathing test where I had to blow into a tube for as long as possible and lastly have a chest x-ray. Thankfully they all came back good, which again is great news but not good news because I still didn’t have any answers. ‘So what’s next ? Well’, the chest specialist I saw put me on these tablets for 4 weeks to see if it helps with my breathing. Might I add that they were disgusting, I honestly don’t understand how one tiny tablet can taste so bad that you would wanna throw up …
January 2023 hit and I got my first appointment of the year on 17th January … I HAVE TWO BRAINS!! ‘Ok, I know what ya thinking what?’ Let me explain for anyone like me who didn’t know, The gut is actually known as the second brain, ‘aye?’ Yes its confusing but any way, it turns out that my subconscious brain as taken over my actual brain, ‘and well has a mind of its own’. Not only tricking me mentally but has also caused physical symptoms including: Chest pains, heart burn, struggling to breath, bloating and fatigue. This is a genuine health condition not many know about. It sounds silly and odd, ‘but hey that’s me’. I visited the hospital again on the 27th January for hopefully my last appointment with my specialist, just to talk about the medication. After this, they sent me on my way.
Updated thoughts: I have 2 brains? ‘Sooo It's all in my head? Hold on, but I have physical symptoms, Wait so its not all in my head, so what do I do? This is confusing, I feel overwhelmed right now, Can I do this ? Yes of course I can do this! I’m exhausted just thinking about it all, blahhh! Ok breath, take a minute, Let's make a plan and get going.’
It's officially a year and one month since it all begun, Now with all the information and advice I have been given by my doctors I plan to fight this full speed a head. I’m ready to put on my boxing gloves and tell my second brain “Not today brain, Not today” (if anyone knows where a version of this quote is from then your brilliant).
2022 was a tough year and apparently 2023 is gonna be no breeze either, but it's ok. I got this, and I will be writing to you all at the end of 2023 saying ‘I did it!’ And telling you all how I achieved this and hope that I may have helped anyone else out there who is currently struggling with the same.