Tuesday, 12 March 2019

My experience of swallowing problems and EDS - Having an Oesophageal Manometry

Since the beginning of the year, you may (or may not!) have noticed that I’m trying to find my feet with blogging again. I went a long time with doing the same old posts and although I was enjoying it, it had become a bit repetitive and so I was starting to lose enthusiasm. So my posts began to dwindle and I put more energy into my YouTube channel (which I also love). But after setting a goal at the beginning of the year to get back to being more organised with blogging and YouTube, I’ve been trying to work out what I actually want from my blog. I’m not sure that I particularly fit into a certain niche – the only one I can really identify with is ‘lifestyle’ because it allows me scope to pretty much post about whatever I want! 

So as well as enjoying posting about beauty, fashion, afternoon teas, books, stationery and all that jazz, I also want to start posting more about health, disability, accessibility and chronic illness. It’s a big part of my life, and I know I will often look to bloggers for advice or reassurance on medical procedures, equipment and just managing life with a health condition, so over time, I would like to be able to offer the same to others. I’ve been through so many different types of appointments, tests, admissions, pieces of equipment and experience, so I feel I have a lot of insight to share. Whether that’s things I’ve been through in the past, or things that have happened more recently. But I thought I would start by talking about my experiences of having an Oesophageal Manometry test. 

I can’t remember if I’ve actually mentioned this on my blog before, but since around this time last year, I have been having problems with my swallowing. It started with a feeling of having something stuck in my throat, which has continued ever since. But now I’m also finding it difficult to swallow solids and liquids – it’s almost like they get stuck with my first swallow, so I need to either keep swallowing or cough to try and clear them from my throat. I get a lot of other digestive symptoms as well (burping a lot, nausea, really painful hiccups, pain, weight loss and reflux) although these could be related to my already diagnosed Gastroparesis and Intestinal Dysmotility. It makes meal times even more difficult than they already were and if we ever have to eat out, I can feel quite self-conscious because I’m aware I’m coughing/choking a lot. My family are used to it by now so it doesn’t faze them, but obviously in a public place it can draw attention. Plus the fact that eating is now an even more uncomfortable experience, which, as someone in recovery from an eating disorder, can be a difficult battle to fight.

Anyway, when these symptoms first came about, I went to see my GP. It just so happened that I had an upcoming appointment with my local Gastroenterologist, so my GP advised me to discuss it with her and see what she suggested. Unfortunately, that initial appointment didn’t go as I’d hoped it would. I explained the swallowing problems, the fact I had started losing weight and how much it was impacting on my life, only to be told it was ‘probably just my Gastroparesis’ and to just get on with it. She also said that I was still a healthy weight, so the weight loss didn’t matter. I remember coming out of that consulting room in tears and sitting in the car with my Dad as he tried to comfort me as best he could. It might sound extreme, but I was devastated. For the next few months, I was back and forward to my GP as she tried to contact my Gastroenterologist and get some proper help, but we were just getting nowhere. Eventually, we were able to get her to admit that this wasn’t her area of expertise and that I should go back to see my Professor up in London. To say a weight had been lifted off my shoulders is an understatement! I have always said that I do not expect doctors to know how to deal with everything, especially when it’s someone like me with very complex and often rare conditions. All I ask is that they can admit this, and pass me on to someone who can deal with it.

My referral back to the Professor came through quite quickly, which was a huge relief. I already had quite a lot of history with him – he had made my initial diagnosis of Ehlers-Danlos Syndrome, as well as doing tests to confirm my Gastroparesis and Intestinal Dysmotility, after years of being told I ‘just’ had IBS. So I have a lot of respect for the way he works and the fact he always seems to listen to his patients. When I went up for my appointment at the end of 2018, I felt nervous, as I do about any medical appointment. I was seen by a member of his team – a lovely lady who made me feel completely at ease. I went through my symptoms and the history of them, and she asked various questions to make sure she had a full picture of what was going on. We also talked about what my local Gastroenterologist had done for me so far, and she seemed genuinely shocked when I told her. It was nice to feel like I hadn’t overreacted about the situation to be honest! Once we’d been through everything, she reassured me that she wanted to get to the bottom of this, and even if it was ‘just’ my Gastroparesis, there were still things we could try to help.

The first thing she wanted me to have done was an Oesophageal Manometry test. I had already had one of these quite a few years ago, during a period of being extremely sick, so she said we could compare the results and see if there had been any changes. If this didn’t give us any answers, she would organise for me to have some further tests to look at other parts of the oesophagus. I came out of that appointment in tears again, but this time they were tears of relief that someone had taken me seriously. 

After a few false starts with my appointment day being changed and then me having to change it because the new date wasn’t suitable, last Friday my Dad and I caught the train up to London. Public transport with a disability is always a story in itself, so maybe I’ll touch on my wider experiences more in a different blog post! But as my appointment was at 10.15am, we needed to make an early start, which meant having to get a commuter train. To be honest, getting the train up to London was a dream this time! I had booked assistance online and although I have no idea whether the message actually got through (a rant for another day!) the guard was very helpful with getting the ramp out and getting me on the train. I read my book for a bit and then nodded off until we arrived in Waterloo. This was where the ‘fun’ began. Because the nearest tube station to The Royal London Hospital (Whitechapel) doesn’t have any disabled access, we have to go by bus instead. In general, I don’t mind travelling by bus – it’s nice to be able to see the streets of London and I don’t get as anxious as I do going underground. But it’s a lot slower than a tube! 

Our first bus wasn’t too much of a problem – I got on without any issues and although the bus took nearly twice as long as it was meant to, we got to our stop without too many issues. We then waited for our second bus and again, got on without any problems. We must have then moved no more than a few metres when the bus just stopped. For a while, I thought it was because the traffic was just being slow, but when I realised we hadn’t moved at all for well over 15 minutes, I asked my Dad if he could ask the bus driver what the problem was, as time was ticking and my appointment time was getting ever closer. It turned out that two buses in front of us had broken down in the middle of a crossroads, blocking traffic from all four exits. Passengers from our bus began to get off, as there was no way we would be going anywhere for a while. Obviously though, to get me off, we would need to put the ramp down, and where we were currently parked, the ramp would have gone straight into a wall. I was desperate to get off, as I was starting to get panicky about missing my appointment, so my Dad asked the driver if he would mind moving forward a tiny bit just so we could put the ramp out. He really wasn’t happy about doing it, and spent ages saying that he wouldn’t. I totally understand that his first priority was our safety, but it’s a horrible feeling to know you are literally held hostage somewhere just because there isn’t an accessible way out.

Eventually, thankfully, he could obviously see how upset I was getting, and he said as long as my Dad stood by the ramp to stop cyclists/motorbikes running into it, he would put the ramp down. I have never been so happy to get off a bus! We went up the road until we could find a dropped kerb and then managed to find a lovely taxi driver to take us the rest of the way. Taxis are probably the easiest method of transport for me in London, but they’re also the most expensive, and I just can’t afford to always travel by taxi just because I’m in a wheelchair. But this was a needs must situation! Somehow, we managed to get to the hospital five minutes before my appointment time, and were told they were running late anyway, so it gave my Dad time to grab some breakfast (I wasn’t allowed to eat) and for us to just de-stress a bit!

Before long, a male consultant was calling my name to come through for the test. By this point I was feeling quite anxious – I remembered having the test before and knew it wasn’t the most pleasant of things to have done. I have also had a feeding tube before, which was a pretty traumatic experience, so whenever I’ve needed a tube since, it has caused a lot of anxiety. Thankfully the consultant was incredibly calming – very softly spoken and went through the whole test with me, allowing me to ask any questions. He also offered me the option of having a numbing spray at the back of my throat – initially I wanted to go for it, but I asked what he would recommend and he said it was worth trying without to begin with so I trusted him on that.

He told me that they would pass a tube into my nose and then down my oesophagus into the top of my stomach. The tube has little sensors on it, which can record the movement of the oesophagus as you swallow food or drink. He said that we would start with me drinking little sips of water. After this, we might progress onto drinking a cup of water very quickly, and if they still needed more results he would ask me to eat some plain-microwaved rice (this actually sounded kind of appealing – I was starving!) 

There was a bed set up next to a monitor, and the consultant asked me whether I was able to transfer to the bed or whether I needed to stay in my wheelchair. I said I was happy to transfer to the bed, so the nurse helped me get into position. She covered me with a huge absorbent sheet (which made me feel a bit like I was at the dentist and was slightly concerned about what they were expecting to happen!) and gave me a sick bowl and some tissues. Then it was time to insert the tube – they could obviously tell I was anxious because the nurse sat next to me, held my hand and told me to take some deep breaths and try and relax (easier said than done!) They gave me a cup of water with a straw and told me to keep taking little sips as the tube went down. This is actually a tip I was given before I had my feeding tube put in but the staff doing that had never heard of it, so it’s good to see that these staff knew how much it could help. I would recommend it to anybody trying to have a tube put in.  

Unfortunately, after putting the tube in my right nostril, the consultant decided it wasn’t in the correct position, so they had to take it out and try again on the other side. Thankfully it went in fairly easily and strangely I didn’t gag at all. It’s an odd feeling having a tube going down your throat and I was very aware of it being there once it was in position. I remember that feeling so well from having my feeding tube (although as my body got used to it I would forget it was there). 

Once things had settled down a bit, the consultant began to squirt a small amount of water into my mouth. I would have to hold it in my mouth until he told me to swallow, then swallow once and stop swallowing until he said otherwise. This was by far the most difficult thing! It’s a natural reflex when you feel something in your throat that you swallow to get rid of it, so I was having a really hard time not swallowing. I think we had to do the test a lot more times than they actually needed because I just couldn’t stop swallowing after taking each mouthful of water. Eventually they suggested that, once I’d swallowed, I opened my mouth slightly and breathed through there – that definitely helped. I think I also began to calm down a bit, so with a mixture of breathing through my mouth and also closing my eyes and doing a bit of mindfulness, we managed to get through that part of the test.

The next part of the test was for me to drink a whole cup of water, as quickly as I could, and then stop swallowing when I had finished. Again, this was easier said than done. I can’t drink very quickly anyway because that feeling of liquid getting stuck starts to build up, so I begin to regurgitate the water and am either sick, start burping or having to swallow until that mouthful has gone down. So I think it took me longer than they were hoping for me to get through the whole cup of water. Again, once I’d finished, I tried to open my mouth, close my eyes and just take some deep breaths to keep myself calm and not swallow.

I was then expecting them to ask me to eat some rice, but the consultant told me they had everything they needed and they could take the tube out. I was a bit confused, and to be honest I wish I’d asked if the test had shown anything (although I’m not sure they would have been able to tell me). But I wasn’t sure why we were stopping and couldn’t work out if it was a positive thing (i.e. they’d been able to work out the problem) or a negative thing (i.e. they couldn’t see anything wrong so had given up). 

To take the tube out, the nurse gave me some tissue and a bowl and asked me to open my mouth a bit and hold the tissue over my mouth. I was fully expecting taking the tube out to be fairly easy, as I remembered it not being a huge deal when my feeding tube was taken out. But this was by far the worst bit for me. My eyes started watering (more so than they did when it was put in) and I started gagging and retching – hence the bowl I guess! It was also quite painful coming out, and left my throat and nose feeling quite sore afterwards. But it was over fairly quickly and I could clean myself up afterwards. Overall, the whole test probably only lasted about 20 minutes – much shorter than I’d expected, although obviously it would have been longer with the food part. 

The consultant explained that he would compare their findings to my last Oesophageal Manometry and send the report to my Professor to discuss with me. I don’t have an appointment date for seeing him at the moment, so I’ll give it a few weeks and if I still haven’t heard anything I’ll have to give his secretary a ring to see what I need to do next. I was absolutely exhausted after my test – partly because of my early start and also because it’s quite an invasive and stressful test, which I think just took it out of me. Our trip back home was less eventful thankfully, and I spent the rest of the day asleep on the sofa.

I’m just really hoping that this test might give us some idea of why I’ve started to have problems with my swallowing, and if it does, some ideas of treatment/management strategies for moving forward. Being told to just ‘get on with it’ when it comes to the symptoms of a chronic (or even an acute) illness, in my opinion, just isn’t right. I’ve heard it so many times before, and just because there isn’t a cure, or isn’t a treatment that will ‘make it better,’ it doesn’t mean that we still don’t need some help in learning how to live with and manage it in the future. I’m just glad my London Professor and his team understand this and I’m hoping this test will be a step forward in coming up with a plan for my swallowing difficulties. 

If you’re having an Oesophageal Manometry test soon and you have any questions, or if you would like to see a blog post about any other symptoms, conditions, tests or experiences I may have had, please do let me know, as I’m happy to talk about pretty much anything! I hope this has given you some insight into what this test is like - it's one thing reading the information leaflet that the hospital give you, but I think it's also really helpful to hear it first hand from a human being!

Have you had an Oesophageal Manometry? If so, how did you find it? Or do you have any experience of swallowing difficulties?

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