Im really struggling. My GPS have been absoloutely awful and nearly 2 weeks ago I ended up in a and e twice in one week. Severe debilitating tummy pain. Sent home both times as not an emergency but am urgent, need endoscopy. My GPS have screwed up so much the last few months and I should have been referred to gastro 8 weeks ago. They have now had to do an urgent referral to them, but were going into week two and im still not on the system. The endoscopy letter hasnt gone to right department either. I am in agony all day everyday. Unable to function. I lost my job last week becauseof my continued ill health (yes it was all above board/they are within their rights) my GPS delayed all this because they kept sending me away saying its fibro (not diagnosed, waiting for rheumatology) refused to help, my rheumy app ive been waiting for them to grade me for 3 weeks, they graded me as least urgent so 18 week wait - not going to be seen even before Christmas. I dont even know if fibro is whats going on. It didnt start with typical symptoms, though I do have widespread joint pain, signs of inflammation, fatigue etc. But these are all bad when my tummy is bad. I think a lot going on is to do with my gut being so screwed its not been absorbing nutrients properly etc.
Im on soft and liquid foods diet, completely restricted, lost 2 stone over last few months and just cannot cope most of the time. I had some accupuncture Friday which helped a bit but I am regularly having points where I feel I just cant cope anymore, or I get more and more anxious that its going to be something bad because can gastritis cause this much debilitating pain? My abdomen cannot be touched, it is agony, this includes lower down too. Everything I eat even liquids and soft foods is causing pain. This cant be normal. I feel so ill, so very ill that I dont even care that ive lost my job because just surviving a day is unbearable.
Im just wandering if anyone has had gastro problems that were this debilitating and its been nothing serious and theyve recovered fine? And does anyone suffer this and its been related to the fibro?
Thanks
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Melwise
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May I ask who told you that you have an ulcer?? Are you taking pills like losec or omeprazole? I have come across people in pain like this with need for their gallbladder removed and seen the organ when its been extracted, as a retired nurse I worked in theatres and at week ends and bank hols helped in endoscopy, I wonder if you are getting reflux or burning motions at the other end?? Does your mouth taste "tinny".. More recently the people who tell our gp,s what they can/cant prescribe, stopped my losec saying offer cheaper alternative without approaching me on how I would cope after trying this 4 times recently over the last 7 years- it has caused me some terrible effects, so much so I am writing to these people in their ivory towers and I am not leaving any stone unturned. The NHS is becoming a post code lottery, you have the right to be referred anywhere these days, gp,s just go for the nearest lists to put us on.
Im on nothing as waiting for endoscopy. Ive had gord in the past cleared up for years before all this started, but tried lansoprazole to begin with it made me worse. Not allowed any meds whilst waiting for endoscopy.
Gall bladder been ruled out via ultrasound. I do have reflux too but its the whole system, I have nausea belching, a weird sounding belch more like my tummy is tryinv to vomit but cant. All day long pain - so hard to tell when worst. I feel like theres a big ball sat above my belly button, pain through to my back too. Moving hurts but sitting still does too. Nasty taste in mputh constantl but not tinny just tases like ive been sick. But it is the pain that is the worst, I want to rip my tummy out. I get side effects that are bad from all pain relief too so struggling to get relief. The only thing that is helping is a herbal tea that the Chinese accupuncture prescribed but only one a day before bed.
Theres burning pain and beching when I dont eat and then pain an hour after eating, so it is just constant zero relief.
My GPS wont do any referrals elsewhere, ive absolutely had enough, it took calls from a and e staff to get them to do referrals. I am so depressed now, and I know this doesnt help so trying to manage that but it all feels hopeless and I sit watching my daughter and feel likr I will never get to do anything else with her again, that this must be something worse to be inthis much pain
You are doing the right thing liquidising your food BUT make sure you dont do any spicey stuff and avoid adding salt, drinnk loads of water to flush out any undigested food, your gp has a duty to put you on all waiting lists to see who can see you first, if you are on Choose & Book you will be on national waiting list.. Just keep presenting yourself at A&E when you cannot cope with pain and they will eventually see you need to be seen sooner.We are no robots we all have a pain threshold- just create a fuss stamp your feet a bit! Have you tried using gaviscon? that wont aggravate an ulcer and it only stays in your system 4 hours so when you are sent for it wont be there, just keep drinking water too and the herbal tea sounds good.
Thanks. My diet is so stripped back am having no aggravating foods at all including drinks. Infact at accupunture they said drink water luke warm so not to cold or hot too, im literally avoiding everything possible. I had already cut out all processed foid, sugar salt etc. Im now down to essential veg and fruit - and knoe which ones to avoid, chicken not too often blended in. Then have porridge - dairy free, not had dairy in 6 mths, so many things, think thats why im so upset because I have been doing all the dietary advice/lifestyle changes and everything possible and I see negligible improvements that dont last.
Did you try probiotics? That was the missing link for me.
I Had endoscopy, blood tests domperidone lanzoprazole, (Bad) Gaviscon helped some but made me bloated. Antacids (Helped but not much), Zantac (Stopped working) Clue was that IBS meds made me worse. GP didn't believe me. The meds were to stop cramping but simply stopped my digestion entirely. I eventually realised I had slow transit. My GP groaned when I mentioned it and waffled some more about stress.
I was hopelessly constipated, could eat a couple of bites before I was full. I would be full and bloated all day and often after lunch would be full til midnight and beyond so couldn't lie down to go to bed. I had acid and Gerd and felt desperate. I had painful trapped wind to the point I feared I couldn't cope with the pain. My weight was dropping and my GP commented I should be so lucky.
I dreaded eating yet I was still hungry despite being full so I still needed to eat. I was in fact starving.
I cut out all the healthy foods I liked because they bloated me. All I could manage were low fibre/no fibre foods. I lived on chocolate for energy calories and it didn't fill me up much. People kindly told me I looked ill and should put on weight. Was I anorexic? they wondered. It was terribly hurtful.
I read loads researching my probs. I diagnosed Gastroparesis. but mostly that is not understood with no real help except a fibre free or low fibre diet. Awful. And so unhealthy. But at least (with taking Magnesium Citrate) I could poo! Again the Drs meds hadn't helped this.
So I researched more and decided to retry Probiotics. In the past they had made me poorly. I think The good brands are much improved these days.
The tablets need fibre for the good bugs to eat so that was tricky to start with, but in time I did start to make progress.
The gerd improved. I could eat my breakfast without feeling sick and bloated. I could manage a little veg soup. I put on weight. You will understand how that feels. I've put on a whole stone which sounds gross but looks nice. I look healthy. Still not chubby but right for me I think.
I would urge anyone with tummy probs to try probiotics. These good bugs are an essential part of our digestive system. Drs have prescribed anti-biotics as though these bugs are optional. I think I will always need to take the supplement. The bugs you buy aren't as resiliant as the ones we were born with. It takes time, and being careful listening to your body. My tum is still not perfect I get things wrong, I have sensitivities but I can eat proper food and that is great.
If drs meds help they are just controlling symptoms and not fixing the problem, If we can repopulate the gut effectively this could be a cure.
Can I say I started with Biocult Candea now I take Optibac Probiotics for every day? A good search engine will help find you the best price. Not cheap but it was worth it for me. Read up on the subject obviously don't just gobble down my Quack cure on trust, that would be reckless but please don't dismiss it. There is lots of good info on the net to read for free.
You need checking out properly obviously but while you wait taking these could help you now. And you do sound like you are suffering Mostly they do endoscopies and find nothing (Luckily).
I notice like me, many people just seem to get dropped afterwards as though so long as there is no cancer or obstruction or coeliac, they are not sick. As though it is all in their heads perhaps? After I was processed the dr was satisfied nothing was wrong. Just keep taking the Gaviscon etc and go away.
Thank you, I so understand this. And yes I was taking probiotics. I stuck with the optibacantibiotic ones as these had seemed good, not upsetting tummy any further, and obviously this all started with antibiotics so I had supply of those as I took them along side. But when I run out I switched to the everyday and for some reason these seemed to make me feel worse, though stopping hasnt made me feel better. The issues youve had I relate to, if I take anything acid supressing this slows everything so much and just causes problems the other end, the docs reaction to that is to then take movicol which just then meant everything went through me and I clearly wasnt absorbing and just getting weaker. I feel like I just need the endoscopy to rule out stuff and check how bad etc to then figure out what to do. I know they will only offer meds that really wont help but at least I eill know what im working with in regards to if its inflammation/ulcers etc and will do my own research.
movicol was dreadful for me. scared to leave the house for days on end but still obstructed eek! magnesium citrate after the first exploratory dose has been a life saver also good for fibro. You have to find what is right for you. Too much and you are tied to trotting to the loo for a couple of hours. (then all done) No biggy if you take in the evening hey? I take the powder and it was a quarter teaspoon each evening to keep me cumfy. Or there are tablets 200mg I think? One or two? separate doses? Again had a read up on the subject.
If it isn't coming out properly then stuff is fermenting and rotting and making us toxic. we will also struggle to keep adding more food to the mix.
The probiotics have to be what suits your tum. And I think you must take them regularly each day with enough bug food. Which they call prebiotics but is really eating a bit fibre stuff like veggies. It is not an exact science but it has helped me. Likely if you read up there are tailored formulas for tummies. I found the Candea good to start with possibly because it was helping to get a better balance of good and bad bacteria.
I think you need to take notice of how your tum reacts. I was terribly nausious on some brands but they had one or two different strains. the new formulas had a better spectrum of bugs.
You could try adding your probiotics to home made yoghurt? Open the tablet an pour the powder into your milk and culture. That way the bugs are live and ready for action?
I was convinced there was something massively wrong. I looked skeletal and ill and felt worse. I know how bad it feels and how desperate you feel when no-one understands or takes you seriously or can help. I do think Fibro teaches us to take responsibility for our selves and our health because we simply have to to cope.
Ooh just though, didn't optibac recently change their daily formula to one a day instead of two? Did that upset the apple cart?
They do lots of different ones but I expect like me you noticed the daily was the best price?
I ended up in hospital for 2 weeks with severe stomach pain at age 21. They could not find out what was wrong. After discharge I went to my GP who diagnosed IBS immediately. That was 22 years ago before IBS became widely known. I have been taking fybogel and mebeverine daily since.
Then in 2012 severe tummy pain again aged 39. I was in pure agony I was in and out of a&e and at my GP loads then I fell seriously ill and they found I was bleeding into my stomach. (Helicobacter pilori virus) . I had to be put on several antibiotics and all I could stomach were build up drinks. The recovery from this was long as I was so so weak from the bleed.
After several months I went for an endoscopy to check my stomach had healed and it has. I take lanoprazole daily now.
See this is what worries me. They have done lots of bloods, say h pylori has been ruled out, but when I first ended up in hospital 3 months ago I had low folate and low iron and a host of weird problems they couldnt figure out, they keep saying its nothong as in theres no reason I wouldnt be absorbing stuff but my worry is bleeding that then causes deficiencies and other problems. I feel like my body is literally destroying itself from the inside. I get sent homr from a and e because they say they cant feel a blockage, no signs on bloods of bleeding but im in absolute agony.
My GPS wont even see me, they have made it impossible for me, theyve written awful things and are saying its in my head. A gp last week told me I just need to eat more and get up then I will be fine.
I feel so worthless and hopeless right now. I still try to do those things and end up so much worse for it.
Thats good that the helicobacter virus has been ruled out as this is what caused the bleed into my stomach. The test for helicobacter is definitive so if the test comes back negative then u don't have it. End of. So try not to worry about that.
Blockages are easy to diagnose so if there's no blockages there's no blockages.end if. So pls try not to worry about that.
( when is was in hospital 22 yrs ago which resuulted in IBS diagnosis they did an uktrasound scan which showed my bowel was full to bursting yuk !! This was a symptom of the untreated and undiagnosed IBS and which was partly responsible for my pain at the time).
Stress can cause my IBS to flare up n cause stomach pain.
They havent done anything to rule out blockages yet. They have just said cant feel anything, as in my abdomen is soft but clearly very painful, eorst being upper gi but lower tender too
The biggest cause of stress has been my GPS, even hubby feels stressed talking to them and hes quite laid back. Theyve made every step the last 3 months a challenge
I really hope you get to the bottom of why you are In pain. The type of pain ur in I can relate to in myself as the pain associated with IBS..that condition can be agony when it flares up even though I'm on medication. Take care
hello........i have had remarkably similar symptoms to yours since aged 11, with endless horrible tests, endoscopy, barium swallows, scans and dyes, blood tests galore etc etc and still THEY have no idea of the cause !!!!! a scan showed a large gall stone which i was told would not cause my symptoms....... for the past month i have been trapped on my sofa in severe pain as if my whole stomach is on fire and can barely eat......i insisted the doctor came out and i cried with pain when he prodded my tummy everywhere........he told me a recent blood test had showed some inflamation going on somewhere in my body but could not tell where from !!!! great help then !!!!! i am still in agony today and simply cannot function at all .........i am having yet another scan tomorrow but i know it wont show anything as usual and i dont even feel well enough to attend !!!!!!!!! fibromyalgia is bad enough on its own so as soon as something else pops up you can feel even weaker in everyway.......i also try so hard to get up and eat and do the mind over matter process but it does not work for me !!!!!! one doctor told me it was just stress........!!!!!!!!! i have a teenage son and its breaking my heart that im such a ridiculous mess physically that i cant act like the mum i know i could be .........i know how long it is to wait for tests, and then they see nothing and say bye bye.........i do so hope you get some help soon.
I am so sorry, it is awful, and yeah, my daughters 5, our life has been turned upside down, we dont do anything we used to do, im not a patch of who I was and its breaking my heart.
I hope you get somewhere tomorrow. One thing though I have no idea why theyd ignore a gallstone. They thought mine was gallstones to begin with and treatment is gall bladder removal. Its crazy that youre still in pain and ignoring something that could be the cause
thank you for your reply.....they told me the gallstone is big and cant go anywhere on its own and would not cause my symptoms........i am extremely upset today as i am not well enough to attend my scan........so still stuck on sofa in agony for yet another day with no hope of relief or help........i feel my whole tummy area is bleeding inside and on fire......doctors think im a hypochondriac i think !!!!!!! they dont realise all these symptoms have broken me, im not me anymore just a bag of horrid symptoms everyday......what effect will this have on our impressionable beautiful children ??? so much time to worry about them..........my son is 13 ........i never do a thing with him its impossible.........we are missing their childhood in lots of ways......how are you today....have you found anything at all that helps a bit ????????
Im so so sorry, I hope you manage to get to an appointment. I thought it didnt matter the size specifically, if its there it can cause pain, being a risk of passing isnt the only issue.
I have found the stuff the Chinese accupuncture gave me on Friday is starting to help, its taken some nausea away and some of my reflux symptoms, and cutting out the food she said too has meant I am back to a standard continual pain rather than that with then crippling pain after eating. So ive been able to move around the house today.
Things I did different to general advice, she specifically told me to cut out things like herbs, onion, strawberry - any berry with seeds actually. She said others but I cant remember all. I think I was using prebought stock cubes and adding onion to soups and that meant even as a liquid it was still aggravating. Oh also cut my one cup of decaf tea as she said to. Also she said that everything should be eaten and drank at a warm temp, she said like the inside of the body nothing to make it heat up or cool down. I thought warm water would be horrid but warm water from kettle actually helped settle one point where it was agony. It definitely feels gentler
I've had h pylori from the GP, and it said negative. Still had acid reflux, uncomfortable on the right side under the rib. Felt that I still have h pylori. Had a private h pylori and said positive. Took antibiotics but a reaction to the antibiotics. Used natural supplements. After about a month or so, tested again, h pylori negative. My stomach feels clean now.
This is interesting, can I ask if the private test was different? Im fairly sure I was tested years ago to so would be really surprised if I did have it, but im looking at private gastro
A couple of people have asked if ive been checked for crohns, I havent, how do they check? Also do you have all the upper gi trouble? I feel niave but I always thought crohnd affected bowels, where as I have mild discomfort with my bowels but no massive troubles unlike with my upper gi
Crohns can effect anything from your mouth to your back passage they had an idea I had crohns from a specialb x ray but that was 30 years ago.so it's probably all different how they diognose for it now I get a lot of lower tummy pain my left hand side but also upper tract pain burning an acid although I take losec I sometimes have no use a lot of gaviscon an mote losec i can have trouble going as I have some much scarring now or other days diorea up to 20 times I don't absorb iron or iron pills so I have anemia at least twice a year,I hope you get sorted out an find out what the problem is take care
I'm so sorry for you going through all of this. I have to agree with the suggestion that, if possible, you keep turning up at A&E (do you have a choice of hospitals? i.e. could you try another?) and hopefully they will admit you and do the necessaries.
My good wishes to you, and I really hope you will let us know how you get on.
Iv exhausted. all treatments,so I'm now having an ileostomy op next month(a permanent stoma bag) they took out half my bowels when I was 21 now there taking the rest an my rectum,iv been lucky to get this far without a bag.anyways you keep pushing an I hope you get your answers
Thank you. Yes we tried both hospitals in area, but there is one slightly further I ended up at in the past and they were much better. Weve already decided that if pain becomes unbearable I will go there.
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Mouth Ulcers - Relief?
I HAVE FIBRO BUT THINK I HAVE HAVE MS HAS ANYONE ELSE HAD THE SAME PROBLEMS I HAVE
Does anyone else get mouth ulcers? 
Happy birthday to me and an update after my appointment with gastro doc yesterday [6/19]
Never done a blog before but I'll give it a go!
