Thursday, 2 January 2014

Gastroscopy and results

Today I had a gastroscopy, a kind of endoscopy - they put a camera (on the end of a tube) down into your stomach to have a look around.

I had it done because for years and years (ever since I was a child, actually) I've had problems with my stomach and digestion. The earliest symptom was feeling sick all the time and struggling to finish my meals. Thinking about it, I'm pretty amazed it's taken until the age of 25 to have sufficient investigation into this problem, but I digress. Since the age of about 21 I've suffered with quite bad bloating. I've only discovered recently some of the things that set it off, one of which is fibre. Crazy right? Fibre is meant to be so good for you. It bulks out in your stomach and makes you feel full. This is a good thing for some people because it means they can stay fuller for longer, and it helps you maintain regularity with regards to bowel movements. It's a conventional wisdom that you should have a decent amount of fibre in your diet. However, for me, fibre just bulks out in my stomach and sits there, and then bloats me enormously. My stomach basically just seems to stretch to compensate for whatever's in there, rather than pushing it through my digestive system. So you can imagine how a substance that "bulks" in your stomach is not a good thing. Let me show you an example of what happens when I eat high fibre food such as fruit/ veg:

Nope, not 6 months pregnant. Just bloated. Draw a line from the top of my stomach to the bottom and that is my stomach before bloating, i.e. flat. So you can see how enormous this swelling is in comparison.

This can also happen for no apparent reason. I haven't worked out all of the triggers yet. Another problem is that after I've eaten, things often feel like they're coming back up or repeating on me and I have to frantically swallow to avoid throwing up in my mouth. Tea is a particularly bad culprit for that, for some reason (although I still drink it, and normally it's accompanied by biscuits, and it ends in me almost puking every time but god damn it I'm stubborn). I've always struggled to drink enough water because it just feels like it's weighing my stomach down and I'm going to drown in it. There are many more symptoms but I won't list them all (partly because this post is already going to be long enough, and partly because I want to retain some modicum of dignity. Pffft).

I'm going to describe the procedure I went through today and then explain what was found.

Just a few things to take note of before I continue: I had a really bad experience with my gastroscopy. Please don't panic, it doesn't mean that if you have one it will be the same for you. Everyone seems to have different experiences and many find that it's absolutely fine and a relatively easy medical procedure to endure. I'm sharing my experience, though, because it can be like this for some and I'm sharing the worst case scenario.
Something else I must say before I start: the medical professionals involved were nothing but competent and lovely to me the entire way through, and it was not horrible because of anything they did wrong.

I was told that I should stop taking Omeprazole for the two weeks before the procedure, if at all possible (Omeprazole is a Proton Pump Inhibitor - which essentially means it stops the stomach being so acidic and therefore, in theory, helps to prevent acid reflux). I was also told that I must be nil by mouth for 6 hours before the procedure (food and all fluids, including water). This is so you don't vomit during it. I really struggle with long periods of not eating, though (I get weak and shaky), so I made sure that I got an early morning appointment so that my "nil by mouth" period was when I was asleep anyway!

To begin, I was called in by the nurse to have my blood pressure checked and to go through some forms and questions. The nurse explained the procedure thoroughly to me and I was asked if I would like sedation. STUPIDLY, I said no because it would involve sleeping it off afterwards which I couldn't be bothered with. It was a really bad idea to turn the sedation down, though - more on that later. I was given a numbing local anaesthetic spray in my nostrils, because I was having the endoscope put in through my nose rather than through my throat, which is apparently an approach which results in less gagging than when you have the endoscope administered through your mouth. The spray runs down the back of your nasal cavity and into your throat, numbing your throat at the same time which results in a really odd sensation - when you swallow afterwards it feels like there's a lump there even though there's not. It's not painful, just a bit strange.

I was sent through to an adjacent room to wait for the procedure for about 5-10 minutes. When I was called in I had what was going to happen briefly explained to me again, and I was given another numbing spray up my nose. This was when shit started getting bad. That spray burned like FUCK. Seriously, stingy central. Not fun. It burned up my nose and down my throat, it actually felt like it was all on fire. A few minutes later I had to have some MORE of that spray (at this point I was like... yeah. I'm not enjoying this). To be honest, I don't seem to respond to local anaesthetic of any kind very well - it just doesn't work well on me. So I think I felt more than I was supposed to during the procedure, but anyway, onwards...

I was introduced to the nurses who would be looking after me while the doctor was doing the endoscopy. They attached a peg to my finger to monitor my heart rate throughout. One nurse was by my head and the other one was by my side. At this point I was thinking err... why do I need two nurses to look after me? I thought this procedure wasn't meant to be bad? Let's just say that as soon as the procedure started I understood why they were there.

The doctor tried to put the endoscope (which is a bit thinner than a pencil) up my left nostril but I have a tiny nose and it wouldn't fit through. So he tried my right nostril which was slightly bigger but he still had to really force the endoscope through. That resulted in an enormous feeling of pressure in my nasal cavity, and it gave me a nosebleed (unsurprisingly). It felt like it took a bloody lifetime to get the endoscope through my nasal cavity and down my throat and by this time I had started to cry and was panicking a bit. Having something in your nose (which still felt like it was on fire) is bad enough as it feels like you can't breathe through it, but then having it go down your throat is even worse because then it doesn't feel like you can breathe through your mouth either. It was a really really suffocating feeling. Also, because I don't think the numbing spray worked very well on me, the endoscope was really hurting as it was going down my throat and it felt like I had something stuck down there. I distinctly remember when I was about 12, and I accidentally swallowed a sliced circle of carrot whole. It lodged in my throat and almost completely blocked it so I could barely breathe, and it really really hurt my oesophagus. That's the feeling I got when I was asked to swallow the endoscope. The nurses didn't seem to understand why I was so upset (by now, crying my eyes out, shaking and hyperventilating). I'll tell you why: my nose and throat felt raw and on fire, I had a nosebleed, I was dribbling, I could barely breathe through my nose or mouth, and I felt like - well, like I was having a big old tube rammed down my throat, which I was. I don't think they realised how little effect the numbing spray was having. One nurse was holding my hand and the other was stroking my hair and they were reassuring me, telling me how well I was doing but that was little consolation. I could hear my heart rate going crazy on the monitor and just couldn't get over how fucking horrible this felt.

The next thing I knew, the doctor had apparently finished looking around (it felt like he'd only just got down there! Not complaining that he finished so quickly though...). He slowly pulled the endoscope back up, which made me retch. I was told he was sucking out the air at one point as well (eww). I was taken through to the recovery room with a cold compress on my nose and holding tissues to it which were covered in blood. The whole thing had taken about 10 minutes but it felt like a lifetime because it was so unpleasant/ traumatising.

After this the doctor came in and discussed my results with me (more on this in a minute).

After about 10 minutes of recovery I was told I could go. I had make up smudged all over my face from crying it off and was still shaking. My nose was running like crazy because of the lubrication they used in my nose and on the endoscope. Looking like a sexy beast I went back to my boyfriend's car and probably looked like I'd been through something far more traumatising than you'd expect a medical examination to be!

As for the after effects, I've had a blocked up and runny nose all day (like when you have a bad cold). I've also had epic pain from the numbing spray - my nose and throat were still on fire for a couple of hours afterwards, it felt like there were millions of pins being poked into the roof of my mouth and the back of my nose/ throat. I feel fine now (apart from my nose feeling a bit raw inside), but yeah, the after effects were not pleasant.

The main piece of wisdom I feel the need to share with you about this procedure: FOR THE LOVE OF GOD, GET SEDATED. Don't do what I did and just brave it. Honestly, maybe others' experiences won't be anywhere near as bad as mine and sedation wouldn't necessarily be required, but it's better to have it and not have needed it than not have it and find it ridiculously traumatising, painful and hard to endure.

As for the results: the doctor said that he found no abnormalities structurally in my stomach - no cancer, no polyps, no ulcers etc. However, he did notice that there was no peristalsis whatsoever - my stomach was just "sitting there doing nothing".

Peristalsis is the squeezing motion that the stomach walls enact in waves to help you digest food. I was surprised when the doctor sounded surprised that there was no peristalsis in my stomach - I assumed that that only happened during and after you'd had food or drink, and I had been nil by mouth since the following evening. But no - apparently your stomach should always be in some state of peristalsis, it shouldn't just be constantly still. But mine was doing absolutely nothing, the lazy bastard.

I was immediately glad that he had found this because it supports the theory that I've had for a long time about my stomach issues: that I have gastroparesis. Gastro = stomach; paresis = paralysed. Essentially, a lack of peristalsis meaning that food doesn't get digested properly and stomach emptying is delayed. For a lot of people, gastroparesis gets to the point where they can't keep anything down and just vomit violently every time they try and eat or drink. I am very lucky in that I rarely vomit, I mainly just feel nauseous and feel things coming back up but can normally swallow it back down, so maybe my case is relatively mild. The doctor and I had discussed the possibility of gastroparesis in our previous consultation and the results of this examination completely supported everything he knew about what gastroparesis would look like. He admitted that although he's a GP who specialises in gastroenterology, he doesn't know as much about gastroparesis as consultants who work in that area but he's sure that's what I have and he's referring me to a specialist. I imagine the next step will be a stomach emptying examination to see how long it takes to digest food and to try and work out what will help me manage my condition. Gastroparesis makes so much sense in the context of my Ehlers-Danlos syndrome. EDS is a collagen disorder which causes your tissues to be weak and dysfunctional, so it's not surprising that my stomach muscles are not strong enough to contract and digest things enough. I know a lot of people with EDS who also have gastroparesis.

I did have a bit of a cry after my chat with the doctor - partly because I was still in pain, and partly because I was relieved/ happy that I had had my suspicions validated and confirmed (it's so good not to be fobbed off with "it's just Irritable Bowel Syndrome, drink some peppermint tea"). But also partly because I was just really sad. The thought of my stomach just sitting there lifeless is quite a tragic image. This isn't something that is ever going to go away. There is no cure. I can manage it as best I can but I have to face the fact that it is entirely possible that it will get worse and get to the point where I can't eat properly or at all. That terrifies me because... well... food, man. I enjoy it (when I'm not feeling too sick to). It's a basic human instinct and is hugely important socially, too. Having it taken away would be very upsetting and isolating. I'm trying not to think too much about that at this point, though, and just focus on managing it as best I can.

In terms of management, I find domperidone relatively helpful (it speeds up stomach emptying). I tend to try and have a dose of it before my evening meal which often helps. Omeprazole helps my reflux a bit, and I often take a cyclizine for good measure too (cyclizine works on the part of the brain responsible for feeling sick). The other main management technique for gastroparesis is eating little and often - so essentially snacking through the day rather than having three big meals. That is still something I'm working on getting used to, but I'm sure I'll get there eventually.

Something I'm really struggling with is the situation with fibrous foods. I've always been very health-conscious and try to maintain a healthy diet - and since wholegrains, fruit and vegetables are considered an enormous part of having a healthy diet, I've always tried to include them as much as possible. I *enjoy* eating healthily. So knowing that they aren't good for my tummy is really annoying and contrary to how I instinctively want to eat. Once you take those elements out of your diet, I feel that it's lacking quite significantly in vitamins and nutrition. I don't want to have to live on pasta and rice and refined shit forever. Since I've suspected gastroparesis for a while I've experimented with lowering my fibre intake and it really has helped the bloating situation. But I just don't FEEL healthy when I'm eating that sort of shit. It's a moral dilemma. Do I eat fruit and vegetables and wholegrains and endure mega bloating because I know that they do contain some really important vitamins and minerals, or do I eat refined and processed foods that I know are bad for me but ease my bloating and stop a lot of the gastroparesis-related issues being as severe? It's a real dilemma. I'm trying to aim for somewhere in between the two but it's really hard to find a balance.

Anyway, I shall keep you updated with regards to my gastroparesis journey. I hope this has been helpful if you're curious about either gastroparesis or endoscopies.

1 comment:

  1. This sounds just like what I have. Sometimes my stomach swells so much it feels like I can't breathe.
    As for the endoscopy I'm with you on that one. I didn't have sedation and I refused the numbing spray it was very uncomftble but I figured id be able to get on with my day much quicker afterwards