EUS
Posted , 6 users are following.
What is the likelihood of having a pancreas issue after having a clear EUS scan?
I've been having abdominal pain for over 8 months now, it started off very vague and intermittent but is now a lot more persistent and intense, it is all over abdomen and mid/upper back and now my shoulders and left side of my neck.
I am constantly very tired.
Stools are mostly tan coloured, loose and floating with occasional diarrhea.
My abdomen pulses up and down constantly. I am neither skinny or overweight. 5'11" and just over 12 stone.
I have now noticed my abdomen protrudes on the right side of my belly button much more than the left hand side.
I have been back and forth to doctors and a few gastro's, had countless tests: ultrasound, numerous ct's, mrcp/mri, colonoscopy, endoscopy, bone scan, angiogram, EUS, fecal fat and numerous bloods. All have come back clear and no one can tell me what is wrong.
Before all this started, I was a fit, strong, happy and healthy 41 year old, I am now a shadow of my former self. I have become anxious and have been on mirtazapine for 5 months.
After all that clear testing, how likely is it that I could still have a pancreas issue?
0 likes, 12 replies
Sammie1965 jamie04813
Posted
pancreatitis isn't around the belly it's higher up between your breast bones. It's like the worse indigestion pain EVER. You would certainly know about it if you had an attack. Try a low fat diet and no alcohol, may help.
Stupage22 jamie04813
Posted
sounds like textbook CHRONIC PANCREATITIS..... sorry the docs aren't being up front with you, probably because they hope for better news . It's not a death sentence, far from it. It's going to be a painful ride though. Get connected with a Pain Specialist as soon as you can, and if you are not comfortable with the first one, keep looking. It's going to be the most important doc you see, because it is the only doc that can actually help. There is no cure, no treatment, just pain control.
could be worse.......
jamie04813 Stupage22
Posted
Does CP not show up on imaging or blood tests? if not, how is it diagnosed?
How can they be sure it's CP and not something more sinister?
Are there any symptoms that set CP apart from PC?
ashtnren jamie04813
Posted
Hmmmmm i dont think your case is as cut and dry as mentioned above (but im not a doctor so i could be wrong). CP is usually diagnosed by some type of imaging, i believe an EUS is gold standard. I have been told by several doctors (all GI or pancreatic specialist) that a clear EUS means no CP. I have been battling similar symptoms as you for the last year ,and like you my EUS did not show anything nor did a HIDA Scan. Have you looked into Sphincter of oddi? That what my doctor is currently exploring with me. If left untreated it can lead to CP.
jamie04813 ashtnren
Posted
I'm keeping an open mind.
Does a clear EUS also rule out pancreatic cancer?
I have been messed around by a health system that I'm not very familiar with, and have seen various specialists (general surgeons) that have not been appropriate. I have only seen one GI doctor in the 9+ months that this has been going on and that was over 6 months ago, though I am going back to see him next week.
ashtnren jamie04813
Posted
It should, look up rosemont criteria for diagnosing CP- i think thats what the majority of docs go by. It never hurts to request your scans be sent to a specialist or even another GI doc to get a 2nd opinion.
I completely sympathize with how frustrating and insane this can make you feel. it has consumed my life to the point that i even have to take anti anxiety meds. And to be completely honest- i havent 100% let go of the idea that CP isnt whats causing my issues. I dont think ill be able to let it go until someone can give me a reasonable explanation as to whats causing my pain. Ive been lurking around these boards for a while now and have discovered theres several of us in this limbo so hang in there and dont give up fighting for answers!
jamie04813 ashtnren
Posted
I too have been lurking on various different health boards for a while now, trying to figure out what is wrong with me and/or to get some reassurance that I don't have a life threatening illness, that is going to kill me soon.
Before all this began, I was a fit, happy and healthy 41 year old. I am now anything but any of that, it has consumed my life, put a massive strain on my marriage and affected my whole family's happiness. I am now also on anti anxiety medication (mirtazapine), I don't know how much that is actually doing for me other than helping me sleep, though it also makes me constantly tired and a few other side effects.
No one has been able to give me a reasonable explanation for my symptoms either, which are now so widespread, that I am questioning what is real and what has been brought on by anxiety or a side effect of the medication. I've seen numerous GP's, ER docs, a gastro, a general surgeon and a hepatobiliary specialist. No one has given me an answer. All they seem to see is a clear scan or blood test and come to the conclusion that nothing serious is wrong with me and that it must be IBS/anxiety related or all in my head.
My symptoms started out so vague, that the pain was nothing more than a vague feeling in my abdomen. Over this time I have thought that I have something seriously wrong with me like colon or pancreatic cancer (I'm still not convinced I don't have something seriously wrong with me, as I feel so wretched every day), I have thought that I'm going crazy and that maybe it is all in my head. It has been an emotional rollercoaster and the mental strain has been immense.
I have been absolutely terrified at times over this period and have at times broken down as I've been convinced that I am going to die soon. No doctor has been able to explain what is going on for me, so the uncertainty just multiples my fears.
My next step is to see a GI that I saw briefly 6 months ago.
John-1 jamie04813
Posted
Post your scan results or DM to me. I'll check it over. It might be that they found some of the criteria, but not all.
jamie04813 John-1
Posted
There is nothing of any significance relating to the pancreas on any of my scans, the ct and mri/mrcp both say 'unremarkable' I haven't seen a report from the EUS, though the consultant told me my pancreas is 'as clean as a whistle'
The only thing of any significance picked up on my scans was 2 sub centimetre cysts on the liver
Shortie79 jamie04813
Posted
How did you feel after your EUS? Usually they don’t perform them for diagnostic purposes but do perform them for treatment purposes. There are treatments for CP. usually ERCPs and EUS are used for treatments, however both can cause pancreatitis attacks. The dye that’s used in both tests is what causes attacks. The pancreas is the hardest organ to diagnose due to its location and it takes about a year or longer to get a diagnosis. I had ultrasound, blood work, regular endoscopy, all come back normal. It was the MRCP which showed my pancreas divisium and a CT Enterography that revealed atrophy of my pancreas. The ERCP is when I was officially diagnosed with CP but the pancreas specialist was going in to widen my two pancreatic ducts (rare condition I was born with, but still took over a year to find). When you have CP it won’t show in your blood work but the liver enzymes might still elevate (mine do). I’ve undergone every treatment possible for CP and now I will have my pancreas removed and my islet cells transplanted to my liver on August 1st. You can live without your pancreas nowadays. If you have CP you would be experiencing a lot of symptoms … vomiting undigested foods all hours of the day/night, constant nausea, itching, migraines, pain so severe you’re scared to eat because the pain radiates to the back on the left side, hair loss, malabsorption, kidney issues, drastic weight loss … the list can go on and on. I recommend you journal your foods and symptoms. Food is a huge trigger for CP but you have control over what you eat. If you think it’s your pancreas then try resting your pancreas. You do that by not eating solid foods for a couple days. Drink broth or Ensure/Boost, if you start to feel better after a couple days then slowly incorporate bland foods like rice but if you still feel sick then stick to broth. Also try eating six small meals rather than three big meals because it’s easier for the stomach to digest. You have had a lot of tests already and from my experience the MRCP is the gold standard of noninvasive tests. If you didn’t get immediately sick after your EUS then it’s probably not the test. Good luck and hope you feel better soon.
jamie04813 Shortie79
Posted
I felt fine after the EUS. I'm confused by what you are saying about a EUS not being used for diagnosis, from everything I have been told and read, a EUS is the gold standard and most accurate in diagnosing pancreatic disease. I have ever heard of a EUS using dye or being used in treatments. It sounds like we are talking about different things.
Thanks for your good wishes
Shortie79 jamie04813
Posted
I think it depends on the specialist. There's a contrast dye used in the endoscope/ultrasound that can cause a pancreatitis attack or sometimes the needle pricks the pancreas. I think some specialists use it and some don't. If they used the dye and you have a reaction, then you would have an attack right away. I get attacks after ERCPs and I've had 10 of them. Where I live they don't perform EUS or ERCP for diagnostic purposes because of the risks, they are used for treatment purposes only (widening ducts, implanting stints, clearing stones, etc.) However, I know each hospital has their own procedures. I was advised by my specialists the MRCP was the gold standard for noninvasive testing only. EUS is considered an invasive procedure but if you felt fine afterwards then that's really all that matters. You would've felt ill right away. As soon as you wake up you would have felt sick (at least in my experience). Each time I have a procedure I am hospitalized but maybe it's my hospital's policy, I don't know. I do know CP is manageable. If all your tests are clear, I would try not to stress over it. Unless you're losing a ton of weight fast (like 50 pounds in a matter of months) it's probably not your pancreas. CP is rare in the young unless you have a family history, cystic fibrosis or pancreas divisium. If you're not a hard core alcoholic you should be fine. I'm young 39 and I was diagnosed at 37 but I was born with pancreas divisium (two ducts) which caused my CP. I had to learn to live with a new level of pain everyday.