Unexplained chronic nausea
Posted , 10 users are following.
Hello all - Grateful for any help! Chronic nausea for the past 2 years or so that has gradually got worse. Anti nausea meds help to some degree but still feel sick and fatigued most days.
Have had scans, endoscopy etc. Diagnosis is IBS or gastric motitlity ie irritable stomach. Am suicadal at the moment as the nausea is ruining my life - had to stop working etc.
I get very jaundice when Im run-down, but this Im told is down to Gilberts Syndrome. I very rarely vomit food, mainly dry heaving. Im on Mirtazapine which helps with the nausea, also Prochloaprine (spelling) for nausea.
Gastro doctor doesnt know what else to do - just gives me leaflets and says its all down to IBS but I get nausea/sickness when BM's are normal too. Just dont know what to do anymore. Its just constant nausea and feeling like Im going to be sick on and off throghout the day.
Also just seen a dietician - have cut out milk and bread etc for periods of time but again no noticable change. Dont know if something else non stomach/bowel related could be causing the nausea? Liver, stones etc.
0 likes, 16 replies
philippa61759 paul87769
Posted
We're you given a colonoscopy, stool tests for h pylori, ultrasound and a celiac test among the scans you had? Have you any bowel habit changes and stomach pain that moves about? If all these tests are negative, then IBS can be diagnosed.
sanya11314 paul87769
Posted
Have your scans (CT?) checked the superior mesenteric artery angle? The celiac artery (compression)? Checked for duodenal compression?
(ps: you had a genetic test for Gilbert, right? One symptom seems to be nausea. You might want to look or post into a specific forum where maybe some people had the same and found a cure. https://patient.info/forums/discuss/browse/gilberts-syndrome-970)
Best of luck!
Constant nausea is life disabling! (we take ondansetrone with mild success to lower nausea to a bearable level.)
paul87769
Posted
Thanks for the comments!
Have had colonoscopy and ct scan. Colonoscopy showed superficial ulcers and enlarged ilium.. this was a few years ago.. and ct scan showed small cyst on kidney. Gastro confirms its ibs with irritable stomach. But this doesn't explain the chronic nausea.
I get jaundiced and fatigued a lot. Im told this is gilberts. But doctors just tell you its nothing to worry about.
The nausea is so bad ive had to stop working. But the gastro just seems happy to put it down to ibs and shrug. Just so depressed how ill I am and the effect its had on my life. Oh and had endoscopy which showed irritation but no ulcers.
sanya11314 paul87769
Posted
You puzzle me.
How can you be 'diagnosed' IBS, when you had superficial ulcers in your colon? Those ulcers need to be checked again in another colonoscopy.
Ulcers also in colon can explain nausea and the feeling of being tired (so does Gilbert). The digestive system is connected via a certain nerve. Something deeper in your intestine can make you sick to the stomach.
You also mentioned irritation in the stomach itself, which is gastritis and this itself often enough causes nausea.
Gilber-Meulengracht is a genetic liver disorder and quite common, liver has not enough enzyme to conjugate the bilirubin (which makes it water soluble, would go into bile).
So you can experience higher levels of unconjugated bilirubin in blood therefore as a result of compromised liver enzyme function, but it is usually not dangerously high even when getting jaundice.
Your bilirubin level also usually increases when you fasten.
(this is mostly one of the tests for Gilbert diagnose therefore to compare a 2 day fasten blood level with normal eating habit level)
There is a tests that can also detect DNA mutations of UGT1A1 to confirm the Gilbert diagnose, but not everywhere available.
just in case you were not sure about it. But occasional jaundice with Gilbert is usually not dangerous. You can ask your doc as how they came to Gilbert diagnose.
Only in severe cases phenobarbital or carbamazepin is given to lower unconjugated bilirubin. UV light btw breaks unconjugated bilirubin into water-soluble version, too. There is a Gilbert diet to slightly lower the unconjugated bilirubin level, you sure know or have read up about it, the need to free your liver to function as well as possible, not loading it with additional work from certain foods.)
As to nausea, this is a very hard one.
Gastroparesis can cause nausea (when the emptying of stomach is delayed, this can be measured in an emptying study),
gastritis (irritation of stomach lining) does cause nausea,
ulcers also in the colon do, gallbladder problems do and kidney inflammations. (one cyst in kidney would not worry me either, if it was not compromising kidney function. I have a tumor in there, small enough to stay. You only want to touch the kidney, if it was compromised in its function. Single simple cysts superficially are quite common and accidental finding.)
We noticed (since my daughter struggles with moderate to severe nausea and vomiting for months),
that some foods like soups are easier on the stomach (not guts though, where she has pain, too) than normal solid food. (then again she gets 'sick' of liquid food only)
Rice being really bad actually. Pasta is ok for her.
Maybe you can note a difference due to certain foods,
monitor, what causes less nausea.
We had no luck with cutting out the oh so often blamed gluten and milk.
Having said though: with Gilbert one should avoid animals' milk.
But you know that anyway.
For us freshly pressed raw fruit and veggie juices stay down well.
(for others this might be an absolute gastritis trigger)
Taking additionally some supplement 'shakes' from the shelf, which are quite artificial and often milk powders. (read label)
For us liquid diet works better than solid diet concerning the nausea and vomiting and if solid, for sure not rice or chocolate. (alcohol is no conern anyway). Ondansetrone does lower her nausea level 2 points out of 10.
Have you done a food diary? Are you on a Gilbert friendly diet?
Nausea is disabling! Horrid feeling, so understand you.
Just don't give up yet. With chronic conditions docs are often at the end of their knowledge and a lot in your hands (as long nothing organic is overlooked please, ulcers are a doc field).
Swap doc if needed if you feel unheard. Especially with superficial ulcers diagnosed years ago....where is the check up?
All the best!!!
paul87769
Posted
Colonoscopy report showed superficial ulcers in terminal ileum. Rest of bowel normal. Biopsy normal. Preliminary diagnosis was stated as ileitis. CT scan apparently confirmed it wasnt crohns. Gastro doctor keeps reiterating its ibs with irritable stomach. He wasn't concerned about the endoscopy results or the kidney cyst. However the GPs I see say it sounds more like crohns which is why im so confused about it all.
I follow an ibs diet and yes ive found out which foods make me more ill and so stick to that. Ondadestron just made me blocked up. Ive been taking Prochlaorizine for nausea. But dont know if its safe to take these sorts of drugs longterm.
The gastro doctor doesnt seem to care about the chronic nausea, it's just very much shrugging and telling me to follow an ibs diet. He was the one who did bloods for Gilberts and told me in his opinion it was Gilberts. I take supplements too.
I thought it might be gallbladder too. Ive no idea if its Gilberts or ibs or something else thats causing the daily nausea. Its debilitating. Is it worth asking about gallbladder tests? Im supposed to have gastruc emptying study too, is this worth doing? Or is it simply another test that wont help me
Just so depressed.
sanya11314 paul87769
Posted
Oh Paul, I wished you could ask a different doc for an opinion.
Superficial ulcers can be non-specific, do not have to be Crohns, a whole range of symptoms/pain, biopsies must make sense for that diagnose.
So or so you need a check up, if these ulcers healed or what they are doing, a biopsy from edge of ulcer again. Human error is common and also ok to some degree, hence we monitor.
You should have printed blood reports,
your key is to know if Gilbert is a fix diagnose since it is a mild disease not requiring treatment usually considering the symptom jaundice.
Do you see a genetic test (mostly very costly and often not covered by health insurance) for Gilbert or just the bilirubin, total, conjugated/non-conjugated value? Is it a one-off value?
Fasting test requires two samples. Other tests need administration of nicotinic acid or phenobarbital prior blood taking.
Please, please always ask for printed results.
That way it is even easier to show a different doc, too. Another doc can ask at lab (if you know which lab) for results too, but you avoid another time issue, valuable time that you need with your doc and not chasing up done results.
Of course even with Gilbert a gall badder could still have stones that hurt (inflammation, note: many people have stones with no symptoms) even not obstructing duct and if the duct was obstructed, the conjugated bilirubin level would go up, too.
Why not excluding it (cholecystitis, inflammation of gallbladder)?
Gilbert shouldn't make other symptoms than yellowing of skin occasionally. (nausea is reported, yes, but nausea doesn't carry a label as to why and just because you have Gilbert, doesn't mean, you couldn't have other organic problems, too. True.)
Do you have right upper abdominal pain, too? Then they could start with an ultrasound. If you are missing upper abdominal pain, then I fear no one will investigate the gall bladder.
Gastric emptying study is a very easy (yet time consuming) test and is like measuring fever: you simply know if the emptying is delayed or not, but you don't know why. (My daughter has gastroparesis) But it explains symptoms and one trials and errors with different gastroparesis diets.
It doesn't harm to know.
Colonoscopy you need anyway from what I can read from this end for a check up.
I would take any test that is offered, it ticks through a list of possibilities. Ultrasound, gastric emptpying tests are not invasive, even if it didn't help, is excludes or includes reasons.
All the best! I would ask a different doc, who referred to a different gastroenterologist.
paul87769
Posted
Hi there - just to update you -
Am awaiting gastric emptying scan. Saw the GP local doctor here last week - he switched my anti nausea meds and told me that the nausea was 'just something Im going to have to live with'!!! He also got my liver results up on his computer and showed me the bilirubin was spiking but nothing else - so again he is convinced it is Gilberts and gave me a leaflet and told me again its nothing to worry about - just mild jaundice and to get on with things!
He was quite rude actually - stating that I need to get hobbies and take my mind off the nausea and then the symtoms will go! However the nausea is so bad that Ive had to leave my job - he didnt even react when I mentioned feeling fatigued all the time either. Bare in mind Ive had chronic nausea for at least 2 years now and its only getting worse. I wake up feeling like Im going to throw up and it continues like that in waves throughout the day.
Again the diagnosis from the gastro doctor is IBS with irritable stomach which sounds vague and useless. The GP told me he doubts its anything to do with gallbladder as I had a ct scan and it didnt show stones - feel like Im talking to myself and the doctors are dont give a damn.
The nausea is so intense. Dont know what to do anymore. Cant live like this. And the GP made me feel like I was being stupid and over-reacting - I felt so depressed afterwards. I cant get through to them the effect that its having on me and how I cant deal with it any longer - its making my life a misery. And I cant stand feeling sick all the time any more.
sanya11314 paul87769
Posted
Thanks for the update, Paul!
OMG
That's so frustrating.
Do you have a chance to change your doc/GP please!
(when he shows your lab results on computer screen,
ask for a quick 'print'.
Again it says 'bilirubin spike' but not if conjugated was distinguised from non-conjugated.)
New doc please!
paul87769
Posted
Just to update you - Ive had a gastric emptying scan which came back normal - so another thing to rule out. Ive not got a problem with delayed emptying - but still no closer to finding cause of severe nausea apart from IBS and irritable stomach - whatever that is!
Still severely depressed - when its bad I just think I cant cope with it anymore cos its making me miserable. And of course family dont understand either - get tired of me feeling ill all the time - which makes me feel even worse.
john_89800 paul87769
Posted
Hey Paul,
I realize this is an old post but I too have similar symptoms to yours. I have had on going persistant nausea for over two years now. I take mirtazapine which helps for a while, then I have a bad month. My symptoms began with me gagging after I would eat dinner. This slowly progressed into full blown vomiting after eating. I would throw up around 7 times a day.
I have since got the vomitting under control but Im still nauseous all day long. Its a terrible feeling, and makes it hard to enjoy life at times. I have had every test in the book run with no answers. Doctors all say I am completely healthy, however they don't know what could be causing my stomach problems. Hopefully one day we will be able to find someone to help with our symptoms.
NauseousLaCole paul87769
Edited
Did you ever recover???
Doitazateam20 NauseousLaCole
Edited
Girl ive been dealing with this 24/7 constant discomfort in my stomach since Nov 2018, been to sev drs and no answers. the only relief i have had was about 6 months ago i mistakenly took 1000mg of arythromyocinan and felt really sick at my stomach about 45 minutes later for abot 30 minutes then felt awesome for 4-5 days then it creeped back and been back ever since. Thinking about trying it again ormaybe the flagyl meds. if i do and it works ill def get back on here
anne53212 paul87769
Posted
PAUL any update? Hoping you have gotten better!
Lindajune paul87769
Posted
i am currently at the same point. i have always had stomach issues, but i have been able to treat it. it has been going in 4 weeks. constant nausea, like terrible car sick. i have been to ER 3 times, in hospital 2 days. everyone says im 100% fine. it is very frustrating, they act like im exaggerating. it has gotten demeaning. I was diagnosed with major depressive disorder 30 years ago. this has pushed me to the edge. Cannnot even imagine feeling this way every day for my whole life. I cannot ho anywhere, can only eat jello and soup, even smells make me gag. it is like dealing with depression, no one can "see" it so I am making it up. I am out of ideas.
Lindajune paul87769
Posted
i am currently at the same point. i have always had stomach issues, but i have been able to treat it. it has been going in 4 weeks. constant nausea, like terrible car sick. i have been to ER 3 times, in hospital 2 days. everyone says im 100% fine. it is very frustrating, they act like im exaggerating. it has gotten demeaning. I was diagnosed with major depressive disorder 30 years ago. this has pushed me to the edge. Cannnot even imagine feeling this way every day for my whole life. I cannot ho anywhere, can only eat jello and soup, even smells make me gag. it is like dealing with depression, no one can "see" it so I am making it up. I am out of ideas.
LCat Lindajune
Posted
Lindajune,
I feel so sorry for you. But You're not alone. There are so many people who suffer like you ... as also myself: have exactly the same problem like you. I've had bad stomach problems before .... sometimes for a long time... then I recovered.Then it started again. when having these stomach problems .... the worst of the worst is the constant nausea. I also can't go anywhere ... I feel much too dizzy and weak from the nausea. Like you I have also problems with smells. But please dont give up. It will eventually go away. I feel so much for you..... it must be horrible that people act like you're exaggerating. They have no idea how horrible this nausea is! The problem is that nobody yet knows what is causing this condition and that's why they don't know how to cure it. However there's a lot of research going, especially in Australia, trying to find out what causes it and then how to cure it. When they said 'you're 100% fine .... they mean : you don't have anything 'sinister' like cancer etc. ... because that would be even worse.
In the meantime ....dont give up. Have you tried to analyse .... which foods could have anything to do with it .... I'm sure you did. I'm sure you have been careful wirh food as well...