I need some advice, reassurance, please. I'm new here...
My History: Bear with me...
Feb 2016 I was diagnosed with "gravel" in my gall bladder whilst having an ultrasound for something else and was told they shouldn't bother me so I thought nothing of it.
Nov 2016 I experienced horrendous pain in the center of stomach, under my breast bone (where the bra lies) that went around to my back on both sides. The pain was sudden and such that I ended up in A&E. I was given painkillers, a saline solution, some buscopan and had an x-ray. About 6 hours later the symptoms ebbed away and after seeing no blockages on the chest x-ray I was released with the Dr thinking it was either the gall stones or gastroenteritis. I did not have any repeat of this pain and went back to eating as before.
Feb 2017 as a follow on from this episode I was sent for an endoscopy which found nothing apart from some duodenitis and evidence of mild gastro. I was given Omperazole for 2 months. No continuous pain at this time.
Aug 2017 I had another episode (gall stone attack presumably) and ended up in A&E twice within 48hrs. The pain was unbelievable and constant. Blood was taken, I had another chest x-ray, slightly elevated white blood count but otherwise all normal. The pain this time was in the same place in my stomach (center, top under breast bone) but went around to the right side of my back only - again it dissipated about 6-8 hours after the initial onset. I had had a Sunday Roast before this August attack, was sent home from A&E and told to eat plain food, I decided I would have eggs and almost immediately after eating the eggs I was in trouble again so back to A&E with the next attack. Eggs, I know now are a trigger for a gall stone attack....I don't remember having much indigestion or pain between the Nov 2016 attack to this Aug 2017 attack.
After another awful experience I am now very afraid of eating anything in case it happens again. I am eating very bland food - white toast, grilled chicken, weetabix, white pasta, white fish, apples, banana - things that are easy to digest. I've just added cucumber and homemade soups - no butter, no cheese. I'm not starving myself but have reduced my meal size. I have lost 21lbs since the August attack to date. I do need to lose weight but not necessarily this way. I often have pain in my stomach now in the same place - feels burning and irritated on and off during the day, doesn't matter if I have eaten or not, I am burping all the time, feel full after small amounts of food.
I am really worried and feel quite stressed out about it all.
Sep 2017 I saw a Gastro Specialist who put me back on Omeprozole again (I don't get the point of this medication - makes no difference to me at all) and sent me for another ultra-sound which found that I have lots of little gall stones that are "buoyant". However, despite all that I have told him and the results of the scan the specialist is not convinced it is gall stones but has referred me to see a surgeon to see if they feel removing my gall bladder would be helpful - a sort of second opinion. I told him I was going crazy and convinced myself that I had stomach cancer but he said it was unlikely as the endoscopy 8 months ago showed up all clear. The problem is that the specialist has given me NO idea of what else it could be if not the gall stones. I have no peace of mind and only more doubts now.
As I type this I have a burning, tingly, irritated sensation at the point where you breastbone meets the soft part in the center of your body. I also have a burning feeling low down in the back of my throat - I had weetabix for breakfast at 7.30am, it's now midday. It is driving me crazy.
Does this sound like GERD/acid reflux to you together with gall stones?
Is it just the stress of it all causing this feeling?
Should I ask for another endoscopy?
I am going to phone my GP later this week to follow-up the referral to the surgeon by the Specialist but I am also going to ask more about these continuous symptoms as I am not happy with things so far.
Thought I would run this past all of you in the meantime in case anyone has/had a similar experience. Thank you
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SVR28
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i just wanted to reasure you that on here you will get good advice and support , sometimes people come on here with symptoms and then get a diagnosis for another condition and pop over to another support group , but i can assure you you are on the way to getting help and you are not alone .
your condition does sound like my husband when he had gall stones , they were diagnosed during a scan for another condition . the radiographer said , you have loads of gall stones , better go to your gp , which he did to be told , oh we dont do anything about those till you collapse .well two years later and a lot of minor pain he had the massive pain and ended up in a and e , admitted and after being told after four days they couldnt find time to operate were going to send him home , he refused to go as he was in agony and had not eaten for four days .so got his operation and the surgeon said he was right to refuse to go , he had massive gall stones ! this is not to scare you but to reassure youthat you are doing the right thing in keeping going back . sadly in the uk as we all know the nhs is in an awfull state and if you are polite and dont fight you get no where now . if you know something is wrong keep going untill they get to the problem . once diagnosed there is brillient treatment from amazing doctors , its just getting there .
my blocked oesophagus , and why i found this site , was undiagnosed for fifteen years and was all in my head ,literally sending me down the mental health route , finally i demanded a barium meal , had to pay to go privatly ,we have a very small income ,but i was desperate to convince them i was right .
the good thing is you are in the system and are seeing consultants , the nhs seems to have this one size fits all approach to gastric things , unless one of your symptoms gives a red flag symptom and you are on the two week quick referal . its gaviscone then ppi the stomach acid reducer . blocker , then an endoscopy , then if thats clear it seems to be its your imagination , run along .which a lot of people do . so its posative you are getting more investigation .
the food and acid and stress are so connected , and then food becomes such a thing , each thing we eat comes with the will this set it off thought and then acid and round we go , untill not eating becomes a better option , i can really sympathise with you on this front . my symptoms were triggered by food becoming stuck and setting off spasms , but as different foods did it on different days i, ijust gave that food item up thinking it was fat or sugar content or fruit , only once diagnosed do i now know it was the consistancy not the food and sheer amount .i can now enjoy pureed fave foods again and as much ice cream as i can eat lol .
sorry for the long reply but i am on my soap box to get people to keep going back untill they get results and not just live with things that are obviously causing them pain and distress .
perhaps you could ask for an old fashioned barium meal exam , its what found my diagnosis , an endoscopy didnt and i would still be just trying to cope and still feeling mad if i had not insisted .
wishing you good diagnosis hunting , and let us know how you go on .
Thank you so much for your reply. It is so helpful to know we are not alone and I am not going mad! When I speak with my GP I will ask about the barium meal.
May I ask how your husband is doing now without the gall bladder? I can't find a forum on HealthUnlocked that deals with gall stones.
The op sorted him out gall bladder wise . He still gets the odd dumping as the bile duct apparently releases without being able to calculate the amount to release after gall bladder removal. So sometimes releases too much . But otherwise it was a cure . After ten years of choking episodes and no diagnosis we are back at the gaviscone ppi stage and actually at hospital today to hopefully get a endoscopy referral . ! There are rules in this diagnosis game and we must all play along Nicely lol
thank you , yes refered to the lovely consultant we saw ten years ago , for another problem ,he is retired but still comes in to the hospital once a month as he is a leading expert on throat things . also asked for an endoscopy and they said yes good idea .so thankfully back in the system and will hopefully get a diagnosis . when the nhs works it really is the best .
I'm phoning my GP's surgery today to check on the referral to the surgeon has actually been done and to ask if my GP could call me so we can talk over the phone about all this. I think my main worry which is bringing on my anxiety is the Specialist not being sure and not providing any suggestions of what it could be if not gall stones - to me reading up on it and to the Dr who did my scan and the Dr who saw me in A&E all the symptoms are classic gall stone problems but the Specialist's doubts has put me into panic mode!
Hi there your symptoms do sound like gall bladder issues. I had my gall bladder out in 2014. I had pain like a heart attack after a roast dinner one Sunday in 2011,it took many attacks before they scanned me. They went down the line of IBS. I did an exclusion diet. I unfortunateley have Polysplenia where my organs are not in the right place, hence my gall bladder was hidden by my stomach and didn’t show up on a normal scan. It was found on a MRI. I also had gravel in gallbladder which can be worse than big gallstones. I also had Gastris which showed on many endoscopies. Anyway my attacks became more frequent and eventually they took out my gallbladder. I had a stone stuck in my bile duct which caused me to get jaundice. My stools changed to white color and my wee to black. (This was 4 days before the op which had been planned)
I was on omeprazole for many years.
My triggers were fatty food, eggs, coffee. I don’t eat spicy food apart from onions.
I went on to get Oeasphagal cancer in 2015 which may be from many years of gastric. Luckily detected at stage 1.
Avoid weetabix eat other cereals like bran flakes porridge, muesli. Eat a low fat diet. Include more brown bread, pasta etc. have small meals and not too late at night.
You're definitely not going crazy, at least if you are that makes the two of us, because I'm going through something very similar to you. Mine all started 12 months ago and possibly longer but I've had quite a few health problems since 2014 and it's sometimes difficult to disguished between which symptons are related and which are completely unrelated.
Last september I started to get pain on my left side just below my ribs, It would come and go and I didn't really think much of it at first. Then it started to become more frequent and I noticed there would be more pain after eating and drinking. In the october (2016) I had an ultra sound done and bloods taken but nothing was found. A few weeks later I started to get mucus in the back of my throat, post nasal drip (which I had had on and off for a while but was more frequent now) and pain in my chect and back as well as left shoulder. My throat pain gradually got worse over a number of days to the point it was unbearable. Then my gums started to bleed-a lot! To be honest at the time I thought the blood was coming from my throat it was so painful. Did the usual and googled my symptons and It seemed clear to me that I was suffering from acid reflux. I was also getting pain on my left side this time higher up under my left breast and just below under my ribs. Saw an out of hours doc and he seemed quite sure that the blood was not coming from my stomach-phew! Then saw my regular GP who put me on omeprezole, which to be honest didn't help at the time. Also had my heart checked as a precausion because of the chest pain. A few weeks after that and with no improvement, I returned back to the docs and asked if I could have further tests and an endoscopy appointment was made for me through the NHS, which I had in the December.
As I was in a lot of pain with my throat and side I decided to put myself on a very strict no acid diet, which with hind sight I probably didn't need to do. I lost a lot of weight and was incredible miserable and very down. I tried to keep up beat especially as it was the christmas period and mainly for my two girls. I LOVE food and cups of tea and coffee but I was unable to have anything nice as it just caused too much pain. I'm not a smoker and I no longer drink alcohol (wasn't a bit drinker anyway) and normally under stressful situations, which this all is, I usually turn to food for comfort but now I can't and I find this a real struggle because it's the food and my body that causing the pain.
I had the Endoscopy on the 12th December, which showed nothing at all. The doctors and nurses were all lovely but I could tell that they probably thought i was going nuts because they didnt find anything. I just couldn't get my head around it all, why was I having all this pain but yet nothing was picked up from the test. Not satisfied with the results I decided to see a gastroenterologist privately in January this year (thankfully we have medical insurance). Dr Patel was brilliant and although he thought all my symptons seemed a bit miss matched he was happy to do another endoscopy and a Barium Swallow. I also had a PH Bravo test done too, to check for reflux. The endoscopy showed there was no problems with my stomach or damage done to my esophagus. The Ph Bravo showed that I did not relux at all, not once through out the 48 hour Period that I was being monitored, which in it self is unusual. What was picked up was that the Barium Swallow showed that I had mild to moderate dysmobility, mainly with liquids.
This explained why I kept coughing after drinking and why I kept getting sore throats and the radiating pain through my back. I spoke to Dr Patel about it and he said he didn't know what had caused the dysmobility and that it will probably go on its own and also that he was adamant that I didnt have acid reflux. So with all this in mind I came off the omeprezole and contiuned with life as normally as I could. Nine months on, and I've had one throat infection and constant throat irritation. My pain is still there on my left, which from time to time goes to the centre and now onto my right side. I've been eating normally but sensible, and smaller portions. The problem is I'm hungry all the time and never feel satisfied. I have the feeling of some foods getting stuck. I can't drink any hot drinks anymore, not even camomile tea as they dry out my throat and I'm quite bored of it all now. Spoke to my dr a few months back and he put me back on to a PPI because he felt I was prone to reflux because of my dysphagia. I'm so confused with all the mixed information and the little support or advise. I haven't been advised on how to deal with the Dysphagia at all or what to eat or even how to eat. I'm learning by trial and error and from what I've researched on line. So purley out of frustrtaion I've arranged to see another gastro specialist tomorrow who deals more with swallowing problems and I have everything crossed that he will be able to help me.
I've also had problems with low iron in the past, which is causing my hair to shed alot and now I have very short thin hair. I also have alot of nerve pain in my neck (had since 2014) and a burning ear both on my right. I just can't help but think all of these problems are connected some how. My low iron was undiagnosed for about 18 months too.
Sorry my post is so long, but just though it was important to include as much info as possible just incase anything helps. And also if anyone has any ideas about how to cope with these problems I would be most gratefully for any tips or advice.
I feel so much for everyone on here and I know first hand what it is like to see a loved one go through the pain and frustration that Cancer brings, as I lost my twin sister to leukemia 15 years ago.
Thanks, Louise, for your post. I am trying to convince myself to leave it in the hands of the doctors but push where I can (GP is due to phone me tomorrow to discuss and I am going to ask for a Barium Meal) instead of worrying too much.
There really is nothing more any of us can do than that otherwise we will worry ourselves sick, quite literally!
For me, I do wish that the specialist had been more certain about the gall stones because it is the indecision that is causing me to stress more and I'm pretty sure this worry alone is affecting my health - I have health anxiety at the best of times and now I have an actual thing wrong with me with the gall stones that the indecision and waiting to be seen is beginning to set me off again.
I understand the bit about not knowing what to eat - I'm scared of eating anything in case I have another gall stone attack and actually don't want to eat anything I used to anyway when it comes right down to it but I still miss the idea. Food is my great comfort as well. Cooking and entertaining for my family and friends is/was a big part of my life and it's hard to figure out how to join in now, however let that be the worst of it.
I do hope the Gastro doc is able to help with your dysphagia. It is so frustrating not getting clear answers and, I think anyway, one of the biggest stressors when faced with health issues.
Best of luck to you and thanks again for your lovely reply.
Thanks so much for your quick reply. I know exactly what you mean about leaving it in the hands of the doctors and especially about pushing where you can. More tests the better, I say. If i hadn't had the Barium meal back in January i'd still be none the wiser now. I also had a full body scan too, which I forgot to mention before but all that was picked up was an enlarged heart. I had MRI scan done and ecocardiogram with the cardiologist and she was happy that my heart was fine.
I think not having a clear answer to it all provokes worry and that's only natural. It's as you say, the indecisions and the shrug of the shoulders from the doctors that baffles me.
I too, suffer from health anxiety and it has become worse since this all happened. My regular GP is trying to use my anxieties as the main reason to all my problems, but I know that it isn't the main cause.
I'm really looking forward to seeing the specialist tomorrow as I just need to know how is the best way to deal with the dysphagia. Also whether I can have another reflux test because the dysmobility pain feels so much like reflux pain and heart burn so it's difficuly to distinguish between the two. I don't really want to be taking more medication if I don't need too. Also I hope to find out if there is another way of treating the dsyphagia as I've read that you can have botox injections to calm the throat muscles.
Anyway, sorry I'm rambling again. I wish you well and good luck with your phone conversation with the doctor tomorrow. I hope it goes well and they agree to Barium Meal.
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