Abdominal problems for 9 months!
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For the last 9 months I've had nausea, occasional vomiting, tiredness, abdominal pain to the touch , abdominal cramps, can't eat without getting sick or feel full with a few bites, chills, burping , abdominal swelling. I've had ct scan, ultrasound, blood work. And my doctor can't figure out a cause. I have shown bilirubin in urine 4x , but when sent to a lab they said it wasn't there. Was told today they don't know what else to do. I've lost 40 pounds in the last 3 months alone from this , I don't know where to go now.
0 likes, 37 replies
sanya11314 catherine841989
Posted
As a lab person, I am highly interested 'what' was sent to the lab after bilirubin positive in dipstick urine screen.
Hopefully a blood sample!
The urine quick dipstick tests are a good screen,
but since it is a chemical reaction on a tiny pillow and an 'eye' the evaluator (some have an electric eye with less mistakes)
and urine additionally often coming in different colours, which sit additionally on the pillows (shouldn't but if not blotted correctly on a tissue) and influence it's colour, or timing of evaluation (there is a certain minute cut off, otherwise false result)
a lot can influence the qualitative result of a simple urine dipstick,
if it was due to real wrong chemical reaction or due to colour overlay misinterpretation. (e.g. never take vitamine supplements before a dipstick)
Only the conjugated bilirubin can be found in urine and usually in a concentration (most goes out via bile), that cannot be found via dipstick.
If bilirubin was correctly positive in urine,
it would indicate a high conjugated bilirubin level in blood,
which would be due to some intra- or post hepatic reasons (liver, gall bladder)
and your blood needed checking.
Depending on dipstick the sensitivity can be very good and low concentrations showing up. So low, that person does not have to have jaundice in order to excrete measurable bilirubin.
But bilirubin needs to be checked if it was even mildly elevated in blood.
A true false positive bilirubin result is given if Phenazopyridine (Pyridium) was taken as medication or urine contamined with stool.
You needed definitely the blood to be checked.
Was that the case, what was sent in to lab?
(if urine was sent, storage and light destroy bilirubin.)
catherine841989 sanya11314
Posted
sanya11314 catherine841989
Posted
I would need to do a urine dipstick test myself since it sounds very odd. But a blood test is usually better than a urine screen dipstick test. You have no jaundice, do you? So I would relax about bilirubin in urine positive. (or was it urobilinogen).
Your blood should have had a screening for liver enzymes (liver function test) anyway, too. (ALP, GGT, AST, ALT), usually not expensive.
As to free pelvic fluid....depends on amount. if 'minimal free pelvic fluid' it will be dismissed (as ours was) as bursting cysts constantly drip a bit of fluid. Otherwise it would be called ascites.
Please ask your doc how to interpret the free fluid.
catherine841989 sanya11314
Posted
My doctor said I have all the symptoms if a biliary disease, but I have no idea. Can't wait till my gi apt for a second opinion. Only hearing bad things about this dr now. I'm not going back to her again , she said she can't help me.
sanya11314 catherine841989
Posted
Best of luck!
sanya11314 catherine841989
Posted
Hi Catherine,
I think some endoscopies would be good, too to rule out gastritis/ulcers.
Ruling out H.pylori infection as well.
Gastric emptying study can give a clue, if food expelling movement was delayed and hence the symptoms. From there different trials (medication, food) can be done.
PS: you had a CT scan, I guess for basic overall upper abdomen or was it a specific enterography? (you drink a solution, which is hard if you tend to vomit and fill full quickly)
There is an extremely rare condition (and feeling full so quickly, vomiting, postprandial abdominal pain, bloating fits into it, but please be not scared)
Was superior duodenal compression/mesenteric artery syndrome excluded in CT?
If the specific question is not asked on CT referral, it is not really looked at.
A barium meal seems to be better to show such physical compressions anyway.
When the duodenum get's squeezed in
between two arteries
(abdominal aorta, superior mesenteric artery) or tumor (but that would be well visible in CT),
it's called duodenal compression and food has a hard time to pass through and backlogs into first part of duodenum/stomach (bloating) and is as a compensation vomited.
There is not much that can be done though, than eating very liquid food.
People get relief of symptoms if lying on their left side with knees up towards chest position. Tried that? (nasal tubes for depression of bloating and surgical measurements are last options)
Because a barium meal is less invasive than gastroscopy (but then this cannot asses the stomach lining), you might want to ask your doc to please
- first exclude H.pylori (breath, stool; but no antibiotics and PPI taken prior breath test pleaes)
- to do a gastric emptying study
- to do a barium meal study
- and to do scopes (gastroscopy with duodenoscopy)
side note: the common bile duct ends in the duodenum,
you need to have a blood-bilirubin test done please to explain the bilirubin in urine and exclude a liver or gall bladder or bile duct problem.
You need to get further tested, this is leaving far too many questions still open.
BEST OF LUCK!
catherine841989 sanya11314
Posted
Already tested for h.p.i. was the first thing they thought. Ct was for whole abdomen , was without contrest. I don't know what was included in my ct , I have to pick up the papers tomorrow, they wouldn't email me anything except the findings. I've already had my blood tested for bilirubin, 2x. I do feel better if I lay on my left side , it's worse if I'm flat or on my right side. My doctor won't see me anymore , and can't refer me to a gi since self pay. I'm going to call the gi tomorrow and see if they can get me in someway.
catherine841989
Posted
Thank you for all the information. It's terrible when you have all this testing done while you feel like death and then they can't help you . They just gave up. I've been in tears all day.
sanya11314 catherine841989
Posted
I am sorry to hear that,
but I can so understand your furstration since my young teenaged daughter is vomiting her heart out for 6 months and in severe constant pelvic pain without real findings, no life, no school, nothing possible, appendix removed, adhesions cut, still same abdominal pain and vomiting returning full blast with a Mallory Weiss tear (blood in vomit) now, which is only logic if you go on vomiting for a long time.
(I even didn't go to hospital since it was not gushing blood, just traces of bright red blood in vomit, knowing gastroscopy was fine, no ulcer, no blood vessle to burst, knew about Mallory Weiss from sea sick travellers and what to do conservatively and knowing not to be seen at ER anyway for hours, then due to no dehydration getting no drip, but taking home a nice infection from other waiting patients upon dismissal....a week of TLC later it is getting better, so....)
having said that: not everything was looked for in our case either and at and reports often enough were wrong (what I have corrected x-ray reports is unbelievable, true human error can occur, but does anyone apologise?)
As a child you get put very quickly (much quicker than an adult) in the 'neuropathic pain' draw and 'psychological' and I just know, that xyz is simply not looked at and run my head against GPs to get referals for non-invasive tests (like pelvic MRI for blood supply check or very specific blood tests), which I as a payer and patient cannot privately pay for even.
grhmpf
This dismissive attitude drives me up walls and must drive you crazy too.
I rather have test after test since some conditions are simply rarer than others or harder to find, perseverance is very important. Also it is peace of mind.
Symptoms are easier to stand when really everything was looked at and excluded or when something is found and maybe not easily treatable. Nothing is worse than simply being in pain 24/7 not knowing what is going on, isn't it.
We of course as anyone else being desperate try all the home remedies, different foods, diets for weeks, food diary, squatty potty, probiotics, teas from ginger to herbs, supplements....to no avail.
In your case I have the feeling lots is still open for investigation though.
Lots of testing done, but there is much more possible even basic tests as mentioned.
I cannot believe you did not even get the offer for a gastroscopy, which is state of the art in ongoing symptoms like yours. Gastric emptying and barium meal (which will be very hard for you due to amount) are state of the art, too usually.
From there one would move to take a break and carefully select the one or other test for rarer conditions. Not everything can be found, I agree, the body is a mystery, but if some basic tests are not done.....
It's frustrating when the 'obvious to a blind eye' reason is not found at first go,
that the attitude get's so slow and dismissive by docs even there are heaps of other tests like one person described very well, that his gallbladder sludge and stones were not picked up by conventional ultrasound and CT (if they lack calcium, it happens), but only by endoscopic ultrasound and a certain dye into bile duct test via endoscopy. Perseverance was what finally diagnosed him since basic common usual tests did reveal nothing and was dismissed since normal ultrasound and CT found nothing.
Frustrating, isn't it.
Since you even didn't have the basic common usual tests, you need to get those ticked.
You can ask carefully (docs get p o quickly) if in the CT a compression of duodenum was assesst or not. You can get the pics actually too! (on a CD) and look for yourself. Compare the transverse pics, the aorta and sm artery are pretty well visible.
sanya11314
Posted
assessed....duh, does anyone notice English not being my native language. haha
sanya11314 catherine841989
Posted
OK, so bilirubin(s) in blood were normal value, that's great!
Prepare please all your questions in writing for your gi visit, especially if it is self pay = expensive!
I wish you best, best of luck and that you find the cause and go from there with relieving treatment or care.
Until then maybe try nutritional liquid meals and then lying on the left side (or even face down/prone position)
All the best!
catherine841989 sanya11314
Posted
Thank you , I can't lay on my stomach though. My abdomen hurts to the touch , I even have to wear big shorts so they aren't pushing on it.
sanya11314 catherine841989
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sounds like my daughter, no way to lay on belly or touch it, even coughing hurts. As said, we are put in the 'neuropathic pain' draw after 6 months continuous pain/vomiting, 10 months after intermittend start, a functional problem, that should ease on its own without organic issue. (?)
I have troubles believing it and were told, further tests would just make pain worse since instiling in patient, that something was wrong. ?? Well yes, because often something is wrong, just not found.
I wish you all the best!!!
May you find your cause and be healed!
catherine841989 sanya11314
Posted
sanjeevbhatt catherine841989
Posted
catherine841989 sanjeevbhatt
Posted
No I haven't , my dr said there was no reason. Hopefully I can get in with the gi