My experience of the 96 hour Bravo PH test

After ten years of not really knowing what was wrong with me, I finally got a diagnosis that I have a hiatus hernia and that is most likely what causes my acid reflux. I was referred to a surgeon who said that I clearly have reflux so I don’t need to do the PH testing, I just needed a barium swallow to make sure I would be able to cope with the surgery. Annoyingly, when I had the barium swallow, I had no reflux whatsoever (typical!) so he decided that I did actually need the PH study.
I am on day three of my four day test right now and it hasn’t been as bad as I thought it would be.
Seven days before my test was to begin I had to come off my esomeprazole but was allowed to take ranitidine up until two days before. So I took my last nexium pill on the Wednesday morning before knowing that I couldn’t take it again until Sunday 7th February when the test would be over. I took the ranitidine and at first I thought that I was obviously ok but I didn’t seem to have very bad heartburn at all (or at least no worse than I did when I was on the pills) so I figured maybe I was wrong all this time. But on the infamous day five of being cold turkey off PPIs it all caught up with me. I felt sick as dog and my stomach was basically on fire. But I drank Almond milk and kept telling myself it was just for a week and then I would have some answers that may help me for the rest of my life.
My last Ranitidine tablet was on the Sunday night. I was anxious about not taking it but I just drank as much Gaviscon and took as many rennie as I needed. But the worst day was the Tuesday. You have to stop all OTC antacids and Gaviscon 24 hours before the test. I was going in on the Wednesday at 1pm so I figured I had until 1pm on the Tuesday to take Gaviscon etc. I was suffering quite bad that morning with acid as I wasn’t on medication so I gulped the gaviscon down. At lunch time I took the bottle of Gaviscon down to the lunch room with me, knowing that I wouldn’t be back upstairs until after 1pm and drank Gaviscon as my pudding! (Fortunately I have very understanding colleagues!). I struggled through the rest of the day having almond milk to sooth the burn and just kept telling myself it would be over soon.
On the Wednesday morning I was nervous but my stomach wasn’t burning that badly. I wasn’t allowed to eat or drink for six hours before the procedure so 7am was the last time I could eat. I decided not to have anything to eat as I find sometimes you are more hungry when you have a little something than if you don’t have anything at all. I did have some water and almond milk at 7am though. I found I wasn’t that hungry through the morning and I didn’t really suffer with reflux which was all good!
When I got to the hospital and was taken to a cubicle there were three of us who seemed really nervous. One lady said she had a bad gag reflex, I told them how I have had two failed endoscopies in the past and the third lady was just crying her eyes out (I have no idea if she went ahead with it or not). I was told that I would have three endoscopies (eek!) to fit the capsule. The first would be to make sure my oesophagus was ok to have it implanted, the second was to implant it and the third was to make sure it was in place. Fortunately I was asleep the whole time so I don’t remember any of it!! 🙂 But I was anxious when I was taken into the room to have it done. First of all they couldn’t find a vein to put the needle in for the thing they put the sedation fluid in (I don’t know what that is called). They tried both my elbows and both my hands! In my right hand he moved the needle round under the skin and  I have a huge bruise on my hand where it was done. Eventually it went in my left hand and I was told to lay down on the bed. They got my legs in the right position and then put a mouth guard in and tied it round the back of my head. This is when the panic kicked in. I suddenly couldn’t breathe and the nurse was really kind and helpful. Before I knew it there was something that washed over me and I fell asleep. The next thing I knew, I was waking up in the recovery room and was really groggy. They gave me some water and when I was clearly more awake they let me go through to another room to sit in a reclining chair and have a sandwich. It felt nice to be eating but it was hard to eat as I could feel the capsule tugging on my oesophagus. I also had a sore throat from where the camera had been put down as they didn’t use the throat numbing spray. My husband came in to get me and we got the train home. I wasn’t as sleepy as I thought I would be (after past experiences of having sedation for endoscopies) so we had a quiet night in then went to bed at the normal time. I still found eating a little difficult due to the tugging but I hardly experienced any symptoms.
The little device you are given has five buttons on it. Three of them are for symptoms, one you have to press if you are eating and drinking and the other you have to press if you are laying down. The symptom buttons are marked as being heartburn, chest pain and regurgitation but they gave me the option of changing the meaning behind them. Mine were nausea, heartburn and regurgitation (as sadly I do that a lot!). Every time you experience a symptom you have to press the corresponding button. What they didn’t explain as that the device also shows the PH level of your oesophagus. It was quite interesting to see it going up and down when I was refluxing and when I was having food that neutralised it. But, as I always do, I became a little obsessed with it. I noticed that my reading was quite a high PH which means that the area was alkaline. I was told but fellow sufferers online that it probably meant it had slipped and was in my intestines as the oesophagus never had a PH above 7. Well my highest was 9.6. I began to worry that it had been a failure and I would need to do it again. This morning was day two (seeing as the day starts at lunch time for this test) and I had to go back to the hospital to have the data downloaded and the battery of the device recharged. I was told to take my medication with me and that I may be told I could take it from today (I was hoping so much that they would say I could). When I was in the waiting room they took the device off me and charged it. They later told me that I refluxed whilst I was in there so they must have been able to see what was going on. I asked them about the high PH levels and he said it was in place when I first got there and that the levels wouldn’t be going low at all if it was in my intestines. They told me I could take my Nexium (I was so excited) and then checked the device was synced up to me again and I was allowed to go, but had to come back on Monday to give the device back. Whilst I was in the waiting room I was able to speak to the lady who went after me and some other people who were on their second day of the test. One of them had the surgery done three years ago but it had come loose and was having to have it done again. She said the three years after the surgery were the best years of her life but she was unable to be sick and unable to burp. My surgeon promises me that if I do have the surgery he won’t do it tight enough to stop me being able to burp (especially as I get a lot of trapped wind with my IBS). It was so good to speak to people going through the same thing. Especially when the lady who had the surgery previously told me she had got depressed and suicidal as it was so bad for her and she couldn’t concentrate on anything but the symptoms as they were so bad. I told her that I was glad she said that and my husband had heard it as I often struggle to focus on anything else and it has caused some serious bouts of depression!
I am about to go to bed on day three and it is interesting what my medication has done already. I am refluxing but it clearly isn’t acid as it isn’t burning as much. Mind you, my PH level is still around 8 so maybe it has slipped?! I guess I will see when I get the results. I am told that if you have a fast system it can fall off quickly. Sometimes my system is really fast and other times it is really slow! I have eaten a fair amount of chocolate tonight which has caused a lump in my throat and reflux but they aren’t registering as acid. The real test would be to eat the same things I did on day one/two that caused me issues on day three/four and see if the medication stops the acid. The main thing was a Cadbury’s Cream Egg! That had me in so much pain from the burning and I woke up in the middle of the night feeling sick. I am going to eat one tomorrow and see what happens!
I will end this here but not post it until the test has been finished and I can write about the second two days below.
I handed back the bravo recording device yesterday and I can say this experience was nowhere near as bad as I thought it was going to be.
On Saturday and Sunday my reflux episodes continued but they had a PH somewhere between 7.5 and 9.6 which means they were alkaline. The two days before it was going down as low at 1.5 so that was most definitely acid. I ended up having a stinking cold (which I am still recovering from) and I do wonder if that may have made the results slightly different as I spent a lot of time in bed and not eating as much as I normally would but I wrote that on the sheet to show I had been ill (you have to score if you have been able to have your normal days or not). I find my reflux is worse when I am up and about rather than laying down as I am eating. I am fine when I haven’t been eating! I spent the whole time worrying about why the PH was so high as I thought the device may have slipped but it hadn’t. It tugged when I swallowed (it was a bit painful) and now it has stopped so I know it has now fallen off). I also worried because the device said LI on it and I couldn’t find anything online to say what that meant but I guess I will wait and see.
 
The machine is meant to turn off automatically after 96 hours but mine didn’t! It was still going into day 5 and so I had to continue wearing it as it screamed when it wasn’t near me! (ok beeped but I like to call it screaming!). That meant I had to wear it to the office yesterday which was awkward as when I forgot to put it on when I went to the loo, it beeped and everyone wondered what on earth it was!
I had to wait a long time at the hospital as the computer was having trouble downloading someone else’s data. In the end it still wasn’t working so they took our machines and said they would copy us in on the report. They did tell me that because I had acid the first two days and was told to take my medication, it means that I have a definitive diagnosis of GORD (GERD) which is what I was told I had ten years ago. Although I haven’t heard this from the surgeon so I don’t want to accept that till I have it in writing. I will then find out if I am eligible for the surgery or not. I still reflux when I am on my medication and it still makes me uncomfortable so surely that means I am? I guess I need to stop worrying about it until I have spoken to the surgeon but it is hard not to. But that is another matter.
 
All in all I think it was worth having the Bravo test. It seems it has proved I have the condition it was suggested ten years ago that I have and there are probably options to fix it permanently. The debate now is whether to have children first or not?!
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Finally an answer!

So after 10 long years I have finally found out what is causing my stomach problems and it is not anxiety as I have been told my numerous doctors!

10 years ago I started feeling really sick every time I ate and had a really sore throat. At the time I tested positive for Glandular Fever (Mono) so they put it down to that. I was given pantoprazole to stop the production of stomach acid but it didn’t really help. I suffered like this for months and was finally given an endoscopy 6 months later. They couldn’t find anything wrong with me at the time and told me it was just my anxiety (like they always do!). In the meantime I meant by now husband and got on with life despite feeling sick all the time.

In 2008 it came back with a vengeance and I was really ill. I lost a so called best friend because of this as she could put up with me being ill all the time. Fortunately my now hubby put up with me! I went back for more tests in 2009 but failed two endoscopies. The first one I opted to not have the sedation (like I did the first time) but I was too scared and knew what was coming so I didn’t do it. The second time I had the sedation but apparently I kept moving the camera away from my mouth so the doctor stopped it for my safety. I eventually had a barium swallow which showed I had reflux and was told to take strong anti acid medications (which I was already on and didn’t really help) and that it was all caused by anxiety! This enraged me! I knew that anxiety made it worse but I also knew that it wasn’t caused by anxiety. I know my own body more than anyone else and I knew that I wasn’t making myself this sick. Now it is true that emets do make themselves feel sick a lot as part of the phobia but I knew this was something different. Mainly because it wasn’t always nausea that I was feeling, sometimes it was just like my food wouldn’t go down.

I wasn’t satisfied by this diagnosis so I asked for a second opinion. Unfortunately by this time I had changed jobs and no longer had my private medical cover so I needed to be seen on the NHS. I saw the gastro doc quite quickly and he wanted to do another endoscopy and colonoscopy (I have IBS). But I said I refused to do it unless I was under a general anesthetic. Because of this I ended up waiting another six months and didn’t have the tests until early 2010. Bare in mind that the symptoms started at the end of 2008 then you can see that this was a long time. By the time I had the tests my symptoms had died down a little and I wasn’t as bad. That meant that he didn’t find anything. Unfortunately I missed my follow up appointment but he just told the GP to keep me on the anti acid medication and that was that. So I was just told to live with the acid reflux and get on with my life!

I got bad again in 2012 but my GP refused to send me to a specialist again as I had seen them twice before and they had never found anything. I had just got married at the time and they told me it was probably down to anxiety (there’s that word again) and put me on stronger anti anxiety medication and again told me to get on with life! This happened again at the end of 2014! I was so ill then that I spent in total about a month off work. But again I was told it was my anxieties and was prescribed many different anti-anxiety medications. I kept telling them that this was real but they refused to believe me.

I left it for several months and then went back to the GP at the end of May to give them an update on my mental health (Thrive has nearly cured me) and asked some general advice about women’s things! I did this so they knew that I was no longer in a bad place mentally and they commented about how good I looked!

Then last week my hubby and I went to see the GP about my stomach. I told them that I was hungry all the time and that the acid really bothers me. He gave me advice on what to eat (yeah like that will help. This was gnawing hunger pains not real hunger) and said the acid was probably just something wrong with the way my body worked and to just ignore it. I was furious! I have been ignoring it for 10 years and it doesn’t make it go away. I can’t eat normally ever and I can’t remember the last time that my stomach felt ok!

My hubby and I talked and decided that I should just contact a private gastro doc which I did at the end of last week. I managed to get an appointment really quickly with one and saw him on Monday. He felt my stomach and said he wanted to do another endoscopy and colonoscopy (oh joy!). I had these yesterday. He came to see me when I was in recovery so I am questioning whether I actually heard him correctly but he told me everything looked normal apart from a small hiatus hernia. I spoke to the recovery nurse and she said that most people over 60 tend to have hernias there and that they only affect you if you are getting acid reflux. I felt relieved that there was actually a physical reason I am getting these symptoms but also a bit scared that there was actually something wrong with me.

I don’t get to see the specialist again until 2 weeks time but I have looked up a hiatus hernia and it certainly fits what is wrong with me. But my main question was how could they have been missed by all those other tests when I have had the same symptoms for 10 years? My Mum suggested that maybe I just had acid reflux before and that having that caused the hernia but according to all the literature that is on the internet (including the NHS site and Mayo Clinic) is is a hernia that causes reflux not the other way round. On those pages it talks about two types of hernia but the main one is called a sliding hernia that isn’t always there. Sometimes the stomach slides back under the diaphragm when there is less pressure on the stomach. So my only thought it perhaps this had happened when I had my tests before which would tie into the fact that my symptoms  weren’t as bad at that point. But obviously I don’t know if that is the case and I will ask the specialist when I see him in two weeks but I really do feel hard-done-by here y the GPs and other specialist for telling me for ages that I was creating these symptoms with my anxiety when I knew there was something physically wrong with me! I guess I will wait and see for when I talk to the specialist. The next question is, how so I get it fixed?….

P.S. Just had another thought. A hernia can be caused by excess pressure on your stomach from being overweight (I have been in the past and was in 2014), wearing tight clothing (my trousers are really tight when I get bloated), straining to use the loo (I do all the time and my reflux is worse after I go) and any other pressure to the stomach. I wonder if my emet trait of stopping myself being sick (which I did just after I got married in 2012 – before the previous flare up) actually put the pressure on my stomach and caused the hernia to go out again?