PH manometry test

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Hello I am awaiting a 24 hour ph manometry test I feel rather anxious about this test both about the test itself and the results! 

Wondering if I have the test and then the acid results arnt that high will they still operate as I suffer with so many other side effects that really do take it out of me and effects my life I am only 27 and really do feel held back by the hernia 

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  • Posted

    Hi Breaker!  Sometimes i  feel that my food isn't going down, but it does eventually.  keep me posted re test, and good luck.  Val.
  • Posted

    Morning (well evening) mouth not as bad as it was when I woke up, but still burning and sore throat. It makes me so depressed cos I don't know what I'm doing to flare it up. Then the whole, 'what if the ph test doesn't convince them to give me surgery' pops up and I really don't think I can live the rest of my life like this. The only thing I can think of is that I had a peanut butter sandwich yesterday, just to pack some calories in as I keep losing weight. So no more peanut butter, plus I've upped the Gaviscon. I was doing really well til about a month ago, then it's all started going wrong again. Last time it got bad I wasn't taking anything but now I'm on meds so it should be fine but it's not sad 

    high waisted trousers are a no no for me, too. Went on a bike ride today and had to wear Capri leggings so I'm expecting a bad morning tomorrow. It's so pathetic, isn't it? X

    • Posted

      I think it doesn't really matter what you eat or drink at times as I've had it before when fasting for a blood test and only drinking water so at times I think what the hell and eat and drink what I like but then when I'm suffering I often think I was so foolish to do so!!

      Yea I totally agree that there is no other option for  this then the op I know recovery isn't a walk in the park but I would take all the suffering if it means after I am

      Better I know my friends and family are probably sick and tired of me and hearing about this but I honestly never imagined something like this could effect so many aspects of your life x

    • Posted

      Dear Stella, sorry you feeling bad, I know how debilitating it is. May I ask how long does your sore throat last please when it happens, I have just had a flare up and although my chest now feels less tight my lower throat still feels sore especially when I take a deep breath?

      Ps I hope you get your opp soon so your quality of life improves.

    • Posted

      Hi there, so sorry you are having a flare up sad my sore throat lasted 2--3 weeks before it calmed down this time. I was really careful with my food and meds and take gaviscon after everything at the moment and it's settled down now. Are you on meds? X
    • Posted

      Thanks for clarity Stella, hope you get sorted soon, health so very special. X
    • Posted

      Thanks Stella speaking to others helps normalise and reduce worry. X
  • Posted

    I feel exactly the same. This thing has had me in tears so many times! It's interesting what you say about eating and drinking. I'm so scared now that I virtually eat nothing! I just wish I knew what my triggers are - I guess that the test will show when we are having a bad time... I thought that I would have relaxed a bit on the eating knowing the test was coming, but  not. I'm going to try though. Have you tried raising the head of your bed? Bit weird at first but it really helps. I'm dreading putting it back down for the test but it's only for one night...
    • Posted

      No I haven't tried that but I am like princess and the pea as I sleep with four big feather pillows!! 

      I think it honestly depends on the day as sometimes I've eaten stuff and it's been fine then the next time it's bad acid x

  • Posted

    Hope we both have terrible days on our test ;-) I will be getting the peanut butter out then, for sure! X
  • Posted

    Hi there, I was going to message you yesterday and ask the same! My mouth feels a bit better but had the rib pain thing all yesterday. It's good to know I'm not the only one who gets that. I tried calling the hospital to find out about stopping the tablets but just got an answering machine. I'm going to try again this morning. To be honest, I will do whatever it takes, and if that means stopping the ppis then so be it. How's things with you? Any news yet? X
    • Posted

      Morning! The rib pain is the worst part of all

      Of this for me as it is so intense some days! I'm glad your mouth is a bit better! Keep on trying the hospital they may have some advice for you that can help

      Give you comfort! This week I have really had enough I'm close to tears and really fed up do you ever get like this? X

    • Posted

      All the time. When I've been really low I've even been to the doctor and said I think I'm going to die from it. That's how it feels sometimes. You just can't imagine that it's not something awful because it makes you feel so bad. I've just come out of a few days like that where I felt like it was all coming back and I don't know how to cope sad 

      At the moment my stomach feels odd, like I'm full easily or like I'm feeling a bit nauseous. I so hope the gastritis isn't coming back as I don't know how you can have that on the ppis. I get really scared really easily nowadays. I never used to be like that.

      I was looking through my leaflet from the hospital and it says you can take ranitidine ( Zantac) til 3 days before your appointment - maybe this is something you could

      Ask your doc about. It might make things a bit easier for you x 

      With your rib pain, does anything make it worse? I was trying to figure this out yesterday.

      On the plus side, the consultant said that for people who have surgery it can be life changing. I so hope so, plus I hope

      That our tests give us the opportunity to change our lives smile xx

    • Posted

      I know that's how I feel and the last few days I have felt so low and teary almost at the point where I cannot take anymore I went to my doctors on Monday but was told there is nothing much that can be done which almost makes you feel worse! 

      As for the rib pain mine is pretty much non stop it is worse once I have eaten thou and at times it feels like something is caught in my ribs which makes the pain more intense!! 

      I have also had the feeling of being full bloated and sick that did seen to pass after a few days so hopefully yours will be the same!! 

      I really hope the op changes our life's as I really am at my witts end and don't think I can take much more of this x

    • Posted

      Me too. People don't understand how depressing it is. I had a piece of cake this morning and had to run off immediately and take Gaviscon, then I waited to feel sick or for the chest pain to start. It's ridiculous! My rib pain feels like a knife is catching against something. I spend most of the day touching that spot without thinking about it. Like you it's tender to touch. 

      Roll on August/ September. I so hope we 'pass' our tests xx

      Ps whenever you feel down just drop me a message. We will get through this! Xx

    • Posted

      Meant to add - have you heard from the hospital yet? I phoned my hospital yesterday and they are leVing it up to me whether I stop the ppis or not. I'm not sure what to do. I just want to get past this flipping test! X
    • Posted

      Hi Stella sorry for the delay in my reply! 

      No I have had no word from the hospital to be honest I think my appointment will be on the day I was allocated as the wait is so long I doubt anyone would give up the opportunity! 

      Things have been pretty bad this weekend I slept with 3 pillows not for last night I have woken up with bad acid and a throat that feels like it's been cut! Also my rib pain has been quite intense the last few days!! Also I've started to notice my hair is falling out quite badly I asked my doctor she said she Woyld say it's related to this condition!! 

      How are things for you? You must feel like you do not know what your doing for the best in regards to if you stop your medication or not as they haven't told you what's the best plan of action how do you feel about that? X

    • Posted

      Hi Braker, sorry you're not doing too well. I wish the docs could suffer this for a week or two!

      Funnily enough I've had lots of hair loss over the past few months... Makes you think...

      I'm having a rubbish time too. Bad acid ( or whatever it is) this morning, and I have the bed elevated 8 inches! I just don't understand. The bloating thing and chest pain are horrendous, plus went to the ENT and dentist on Friday and they both said I have inflammation from acid. I'm on anti biotics at the moment for a mouth infection and it's made things 10x worse!

      I really feel like there's something bad happening inside that's been missed, especially my stomach as it feels so bad. My other half wants me to stop the tablets as they make me so ill but I feel like I'm trapped into taking them. 

      From what I've seen on the internet it may be best to stop the meds before the test but that terrifies me as I think if I feel this bad on them what's it going to be like off them?

      I just wish I could talk to someone or get an answer to this. Think I'm going to have to go to the docs again about the bloating as I think that's what is making the reflux worse, like the pressure is forcing stuff back up. Wish I could have another gastroscopy to check what's going on. So not happy this morning sad

      How long have you been off your meds now? Hopefully things may settle down a bit if you've had acid rebound. They say it can take a month x 

    • Posted

      Hi Stella you sound like your having a rough time aswell! 

      My hair is falling out really badly I have started to put a hair tonic on to try to try and stop it falling out Everytime I brush my hair there is a big clump of hair! 

      I am always bloated  at times I look pregnant it's so bad my clothes look terrible when it's really bad I feel so uncomfortable full and sick!! 

      I have I often felt tlike this is something more then they have said but then after reading so many posts I feel like that what I'm going through as nasty as it all is seems to be pretty normal 

      Ive been off my meds for 8 weeks at times my chest feels like it's uncomfortable very tight bad rib pain my throat feels full and like something is lodged in there it is so hard not to take them but I just keep praying for a cancellation yesterday I was sick it was all acid after I ate x

      What date is your test x

    • Posted

      Hi Braker, me again. Just been looking on the internet and in some hospitals the fact you have damage to the oesophagus is enough for surgery. 

      I don't understand why we have to do the ph test when we have these problems. Oesophageal damage and throat symptoms are 2 boxes ticked. I have all 3 as I have Barretts too. 

      I get so worried that on the day my ph test will come back normal. Grrrr! Why can't they just go off the evidence? Might be something to argue though, especially if they expect us to take ppis forever! X

    • Posted

      Test is August 14th so another month and a bit. I feel so sorry for you. I'm glad it's not just me with the bloating. Do you feel your bra makes the rib pain worse? I do. Have you asked the doc for any blood tests because of your hair falling out? You might be a bit anaemic, like a vitamin B thing. I know reflux messes with vitamin absorption x
    • Posted

      Hi Stella 

      I have decided if after the test my doctor says no operation I am going to cry and get a letter from my gp pushing for the op as I really am at my witts end I've even been put on anti depression tablets as she said it's really getting me down and making me ill but hopefully my test shows that there is enough! And yours does too! 

      What is barrets I've heard of it but not 100% sure? 

      I've had a blood test she first thought I had thyroid and was anaemic but both said I was normal so now she's not so sure what it is!!

      I think everything aggravates my ribs even eating and drinking for me it's one if the worst parts of this and it's so tender too!! 

      Hopefully the weeks to your test fly by x

    • Posted

      Hi Braker, Barretts is where your oesophagus has become so damaged that it becomes precancerous. I have a small amount in my oesophagus - but my doc reckons he won't monitor it ( you usually have it checked every year or so to see if the cells have begun to change) because (in his words) it's "an insignificant amount" thing is, it's in my body and cancer starts with 1 cell. That's the attitude I've got to deal with. 

      My doc has already started saying he thinks the burning is functional - meaning that even though I'm in pain it's doing no damage, so if this test comes back borderline I've had it, even though the ENT doc and my dentist have confirmed that the inflammation is back. I've made an appointment at my GP for Thursday so going to go and cry and ask what I should do about taking the meds. God, I can feel the gaviscon coming up whilst I'm writing this. I wish we didn't have to do this stupid test! I'm adopting the same tactics as you tho - if it comes back as not enough, cry and beg! 

      Have you thought that it might be all the stress of this that's affecting your hair? Stress is awful and this condition presses all of your stress buttons big time!

      I feel down too. I was on anti depressants til I found that the ones I was on made reflux worse. Now I've got these stupid antibiotics which have flared things up!

      I so hope that by this time in 6 months we will both be sitting here smiling at all of this x

    • Posted

      Hi Stella 

      It must be such a worry having barrets even thou your doctors think it's nothing to worry about I bet it plays on your mind I hope it doesn't turn nasty and stays as it is for you! 

      I hate gaviscon I think it is disgusting I can't even drink the liquid one it makes me gag it is so vile!! 

      I don't see how your doctor or any doctor for that matter can say that this is normal and expect you to suffer and pop pills for the rest of your days it's just awful as I think it effects so many aspects of your life!

      I don't know what it is with my hair but it is  awful It could be stress but I think the fact I'm loosing it makes me even more stressed then I was to start with! 

      Hopefully in six months this willl all be over I hope that your right I don't even care if it takes me a year to recover I'll do whatever it takes to be back to normal again!! 

      I hope you feel a bit better now my doctor told me once to eat Greek yogart when taking my pills as it's really ment to help things give that ago see how you get on x

    • Posted

      Thanks for the reply and the info about the yogurt - I will definitely give it a go. Been in floods of tears again this afternoon as my chest has hurt so bad ( right under my left breast). I keep telling myself it must be the antibiotics bloating me out and making me feel sick. I was reading somewhere that there's a theory that reflux is caused by your lower abdomen being bloated and putting pressure on your stomach - makes sense to me. If our valves are weak then it will just force stuff up. 

      I'm So having a bad time. I've got two more days of the antibiotics then I can work on getting my stomach back to how it was before I started them x 

    • Posted

      Please don't be down I know it's so hard when this is bad and you have a flare up but you have come so far and done so well hopefully once your tablets are finished your be feeling better and less bloated if you need me I'm here 

      Chin up 

      Charley xxx

    • Posted

      Thanks Charley, so good to know that there's someone out there who understands. Same applies here - here if you need me xxx
    • Posted

      Hi Stella I was just thinking about you actually!! Things are ok I actually slept sitting up last night as the pain in my ribs and the acid was so bad it didn't last long thou as woke up with terrible neck and shoulder pains! How are you feeling now you've stopped your pills x
    • Posted

      Hi charley, sorry about the late reply, not looked at my phone sad 

      Things sound rubbish for you at the moment. I wish they could move your test forward so you could get back on the tablets sad

      Things are definitely better for me since I finished the antibiotics. Less lump in throat and burning mouth but it's still there. The rib pain has been horrendous, to the point where when I described it to my gp she sent me to hospital to check for heart attack - I told her it was my stomach! The doc there says that the same nerves supply the heart and stomach so you can't Tell. I had awful stabbing pains yesterday and took gaviscon and hey presto! They went. As I'm feeling a bit better I'm more worried than ever about the test coming back negative. My doc also referred me back to gastro rapid access clinic so I'm going to take that opportunity to ask a lot of questions, so i will let you know what they say, can you think of anything you want me to ask? Xx

    • Posted

      Hi Stella 

      I am having a rough time this week I feel really fed up today but think being exhausted doesn't help that very much I had a terrible nights sleep last night and today my ribs are so sore and my throat feels tight and like something is caught in there!! 

      I'm glad your feeling better! I think we will worry about the test untill we see our consultant I'm really dreading the test I really am worried but there is not much we can do as we need to have it for the bigger picture!! 

      I'm glad your being sent to that clinic I think it will help you to put your mind at rest and find out things! Hopefully you will get seen quickly and before the test!! Erm I can't think of any questions right now but I will have a think and let you know xx

    • Posted

      Hopefully at clinic within the next two weeks. I'm going to try and get advice about stopping meds. So sorry you've got it rough at the moment. Hopefully you will soon have a better phase. I'm trying to be brave and have tried a couple of more normal foods today but I'm now paying for it - sore mouth and tight throat. It has opened up my mind to trying a few different things now and again though. Wouldn't have dated usually! Have to thank you for that, as I don't feel as horrendous as I thought. Tomorrow will tell as my symptoms can be a bit delayed but so far not too horrendous. If it's the last thing I do I'm going to find out what this bloomin rib pain is when I go to clinic.

      I so hope you have a better night tonight. Got everything crossed for you xxx

    • Posted

      I tried normal food earlier in the week I had a steak as I was dying for one after I ate it my ribs we're killing me and the chest pain and difficulty swilling started! It's so hard thou when you fancy something isn't it!!

      Yes please investigate the rib pain mine is the worst side effect for me and I can only take paracetamol and they are useless my doc said I can't take anything that has ibuprofen or that has anti inflammatory or muscle relaxers in as they can make things worse and also will bring on an ulcer not that I think this could get much worse!!

      I hope your appointment is soon & also that your not paying for your meal 2mro!! 

      Thank you once again for your support you are a star 😘

    • Posted

      Hi Stella 

      You ok? 

      I've just been to my gp she has referred me for a cheat X-ray for the rib pain just to check that out! Also I have been given real pain killers to use at night she has given me three weeks worth so I don't become addicted which is a start! Also I asked her about the test and said I was scared that they wouldn't operate if the results wernt enough she told me that they wouldn't refer you for the test if they didn't think the op was a must and it's just a step they take before the operation to see where the acid comes from so that has put my mind at rest a bit x

    • Posted

      Hey charley, oh good news from your gp then - I think my doc has decided that there's nothing wrong and he's trying to prove that. Will ask him the same question when I go to clinic. Haven't paid too heavily for my chips, but have had constant burning mouth today and rib pain last night. I hate the rib pain! You having an x ray and me being sent for a heart check up- blooming hilarious! 

      I hope your pain killers work. I've been swilling my mouth with alkaline water and that seems to help. 

      When I get really worried about the test I just remind myself that I'm getting symptoms on meds so off meds they should pick something up! 

      I still have to decide whether to stop every tablet. You have set a really good example though and made me braver! You are a star too! Xxx

    • Posted

      Lol they are defo two diffrent ends of the scale I'm going to go in the morning so hopefully by Thursday they would of looked at the X-ray not that I'm really expecting them to say anything about that thing it's just to double check!! 

      Glad you have found a short term remedy and a cheap one at that!!

      I too am worried about the test and my doctor said today that it's just another step on the road of this journey so maybe that's the attitude we should take you have been really brave so far and your test is soon so you need to concentrate on the day to day symptoms and nearer the time think if you could cope with no medication only gaviscon do you think you could do this x

    • Posted

      Tbh I'm not sure, my mouth is so sore even with the ppis the domperidone and GA I dread to think what it will be like without. Scary. I'm hoping that just the amount of stuff coming up regardless of whether or not I have symptoms will be enough if I am too chicken, but I need to know for sure in order to make my decision. I know you have to keep a diary, I've been trying mentally to do this, but I'm thinking whether or not to write it down so I get an idea of how many symptoms I'm having. I'm definitely going to ask the consultant about 'failing' the test. 

      Because he thinks I am in pain with no damage I can now say that ENT have found new damage and do has my dentist so it can't be functional, it is real damage, if it's damage then it has to be acid so it needs dealing with. I feel like a hamster on a wheel... Keeps going round and round in my head, daft bugger I am! Xxx

    • Posted

      Hello Stella how are you getting on? Any news on your appointment yet x
    • Posted

      Hey Charley, had a call from the people doing the test this morning. Apparently it monitors every 2 seconds and plots on a graph so even if you don't feel the reflux it still counts so I'm still torn about whether to stop the ppis or not. Had a terrible sore throat yesterday - I'd made the mistake of drinking a few too many cups of tea the day before :-/

      I've also found a big lymph node on my neck whilst I was feeling my sore throat. Completely freaked me out! Flipping reflux. Wouldn't have been anywhere near my throat but for that!

      How's things with you? Has your stomach settled down a bit? Xx

    • Posted

      Oh so that has made me feel me feel better that it works like that as I did wonder how it would work! Funnly enough I was reading the leaflet yesterday of how they did the test!! 

      How is your throat today? Oh is there anything you can do for the lymph node? 

      This week has been on and off I've had that feeling of something in my throat and also my ribs been sore but more annoying then all that I have had stomach ache after everything I have eaten have you ever had that I read on another group on here that it's ibs and the two things appently run hand in hand x

    • Posted

      Glad it's helped! You might have a bit of gastritis again with the stomach thing if your body is still adjusting to no meds. I've had sore stomach after eating quite a lot and that's what I think it is. Wouldn't be surprised at the IBS thing - I have that too, tho it's usually lower down than my stomach for me.

      I'm convinced the rib pain is the hernia. I have a hernia in my groin and the pain used to be quite similar ( the stabbing pain). There's quite a few on this topic who say similar.

      Trying desperately to ignore my lymph gland. Have an appointment with my gp Monday so I will get him to check it. 

      I really hope you get a date for your test through soon. Mines 4 weeks away today, I'm hoping you get yours around the same time. Will you go back on meds whilst you are waiting for the results? Xxx

    • Posted

      Hello sorry for taking so long to reply!! 

      My stomach seems to have been ok today so hopefully things are on the mend for me with that aspect!! 

      As for the rib pain mine has been at it's worst yesterday and today in little spats of real bad pain but I have noticed it's more intense when I'm either full or hungry!! 

      Yes I will most defiantly be back on them the second the tubes are out I've been so tempted the last few days to take them but have been so scared Incase I get the call!! 

      How is your throat now? 

      Yes please do not worry about the lymph node I am sure it is just part and parcel of this lovely condition we have been unlucky enough to endure!! 

      Thinking of you and sending well wishes xx

    • Posted

      Hey Charley, sooo glad you're stomach is feeling better! I've had horrendous rib pain over the past couple of weeks so I can completely sympathise with you. Hopefully it will pass soon for you. My mouth is incredibly sore today. Once again I've been in floods of tears! You just get to feel so helpless. There's nothing that stops the pain at the moment. Part of me wants to just not eat as maybe that would help but I know that's just silly thinking. Going to ask the dentist to look at my mouth plus the ENT doc, just in cars it's something else that has caused it. 

      I've managed to ignore the lymph gland and to mostly keep off Google :-/

      I have doctor at 8:30 Monday morning so not long to go! I just wish my mouth would stop hurting! Had a slice of toast today and one side of my tongue now has blood blisters! I'm convinced it's non acid reflux that's to blame. The cure? Surgery! Back to square one...

      Going to push for this surgery with all of my might. Have to turn my stubborn side on. Either that or cry... Hmmmm....

      I have read sooo much about the surgery now I almost feel like I'm on the waiting list....

      Honestly, a few months ago this would have been last on my wish list, and now it's top!!!! Xxx 

    • Posted

      Hello Stella 

      Sorry to hear your having a rough time your mouth sounds so painful and must really be getting you down have you tried to gargle salt water for those blisters I know it might sting but could give you some relief!! 

      I too have had the same crazy lets not eat thought I actually even tried it once but then the acids and the pain kicked in again and I thought what the May aswell just eat!! 

      My ribs are at there all time worst tonight I've actually been in tears I am in agony when I breath in I feel like I am being stabbed in the side it's so intense I've tried my asthma pump and pain killers theve both not helped at all! 

      Yes please avoid self diagnoses

      As I often do that and convince my self I am either dying at any minute or that my illness is the worst kind!! Hopefully Monday you will have some peace of mind as it's one less thing for you to worry about please as ever do let me know I am thinking of you!! 

      I think we will be bullying them into this op but I just keep thinking what my doctor told me that this test is just the step before the op and they wouldn't offer you it if they

      Didn't think you needed it!! 

      Hopefully we will both be ok we have each other for support xx

    • Posted

      So sorry about your rib pain sad 

      My mouth has been diagnosed by doctor Google as an awful cancer. Bloody Dr Google! I can't wait I to get a bit of balance from the doctor tomorrow. :-/ 

      I am now down to rice and porridge as my main food sources as everything else hurts too much to chew. This is silly. Also according to the dragon who does the referrals there is no such thing as a rapid access clinic for gastro, even though I've been to it! Going to take the letter in tomorrow and have an argument! 

      I'll let you know what the doc says. He's notorious for fobbing people off do I'm going to push it at the ENT in the afternoon. If all else fails I have a dentist appointment on Wednesday so I'll hassle him about it 

      Hope you're Sunday is going ok.

      Always here for you too smile xxx

    • Posted

      Oh my god I told you to stay away from

      Doctor google! 

      I am sure it is not the big c I am praying that it isn't please try not to worry I know it's easy for me to say and hard for you to do 

      Please let me know

      😘😘 xx

    • Posted

      I know, I am such a numpty! Got to reap the whirlwind of worry nowsad

      thing is, I have mentioned this pain to two dentists and the last ENT I saw a couple of weeks ago and no one has said anything so I'm just hoping its just another manifestation of this bloody horrible illness we have! 

      Pits been really sore today. Hurts to talk even! I have GP then ENT and then already have dental appointment on Wednesday so I'm taking a three pronged approach to reassurance. Going to definitely ask for tests as its just been too easy for them to say "acid reflux" when, there should be no acid coming up because I'm on a high dose of ppis, and I'll mention it to them, especially my gp who seemed to think that the ppis would cure all of my problems!

      ill let you know what the two docs say tomorrow. Just keeping my fingers crossed they are dismissive.

      what would you do about the swollen lymph node, point out where it is or let them have a feel and see if they notice anything. Not sure what the best approach is really. 

      Im so sick of being in pain and worrying, grrrrr!!!!! Xxx

    • Posted

      Go there and show them it and express how scared and worried you are about it and that you will under no circumstance be palmed off with out having it checked I know your scared but it will rest your mind x
    • Posted

      I agree, it's too sore to leave alone. My gp retires soon so I'm hoping he will humour me. Mind you, from what I've read he should refer me to ENT so even if he's being a prick, I've got an appointment with them in the afternoon, he will never know, haha! Xx

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