Lack of diagnosis since 9 months and loads of tests. Advice?

Hi kluesy,

I wouldn't eliminate the possibility of food reactions. I feel dull pain/discomfort 24/7 but I do think it gets a tad worse after food did you have a HIDA scan?

Yep, I had one. My ejection fraction was 96%, the highest my doc had ever seen. So they decided that was likely the cause (as injection of CCK hormone caused pain during the test, a hormone that also triggers the pancreas). However, once I had it removed I got about twice as bad as I was before in regards to what I could eat. I was on the rice/jello/banana food regime for over a month after that surgery. 

One other thing that can cause pain in this region is sphincter of oddi dysfunction, however that usually has food triggers and gets worse after eating foods that trigger bile production (e.g. fat, alcohol).  It's a really hard disease to diagnose, but is common in folks who have had their gallbladders removed. It causes backup of bile in the bile ducts (and pancreas) and thus pain.

I feel your frustration/anxiety not having a diagnosis and thinking about the dreaded PC. I have had 6 liver/pancreas blood panels, colonoscopy, endoscopy, 2 CTs (two-phase), 2 ultrasounds, MRCP, gallbladder removed, and nothing as a diagnosis. The one test I have yet to have is a EUS, and I am going to push for this in the next few months. MRCP has a sensitivity of like 90% in PC (it can detect smaller lesions that CT) and I think EUS is upwards of 95% (with needle biopsy). These negative tests, combined with your age, suggests it is very unlikely you have PC.

I try to tell myself this as well, as my CTs were spread apart by a year and my MRCP was 17 months after my first symptoms started. This would have meant 17 months of tumor growth to not be detected by CT or MRCP, which is possible, but not probable, as PC symptoms tend to show up late in the disease progression. This is why a lot of folks are diagnosed at stage 3 or 4.  

One thing you might try is cutting out fatty foods for a while and see if this makes a difference. Fats strain your bile system and the pancreas, and if you find a relief in pain this may point you in the right direction. I find pancreatic enzymes help keep my pain at bay, which suggests I may be dealing with CP. The average time from first symptoms to CP diagnosis is between 62 and 80+ months, so folks usually struggle for a while before they get a firm diagnosis.... 

Hi Kluesy,

Thanks for you long answer and tips you provided. I just had a second EUS yesterday, and the doctor which is really trying to help me confirmed that there is nothing wrong with Pancreas and the surrounding area. So by now I already had an EUS twice, both times it shows nothing. I had all tests except the HIDA scan and I might ask for it. If I knew Gallbladder is my issue I would take it out, but I dread its not the actual issue. Half of the doctors said I have a stone, while half of them said its a polyp. Nevertheless the size is 0.5mm, so in both cases its not dangerous....

My biggest problem is that I dont have pain so often. Its more like something is swollen or growing or out of its place. It just so uncomfortable and the worst feeling when I sit. I tried Creon too, and while I dont know if it helped with my weird feeling, it did help with the stools. I might try another experiment and try to take it again. 

This feels kind of like torture, just last year I was hitting the gym 5-6 time a week and eating healthy. 

I honestly dont think I have PC anymore. It might be a start of CP tho. I mean I had MRI, CT, MRCP and 2 EUS. It would be impossible for it not to be detected while having such "advanced" symptoms".

Most of my pain/discomfort is in the right side, so EUS and MRCP are especially good at Pancreas and biliary system. To be honest with you, for me its 9 months, for you 17 or 22, so no way it wouldn't be detected by now. Especially after the list of tests we had. I mean with so much time since the start of the symptoms, it would grow and be detected. And if you look at the internet a lot of people have similar issues. Many have tens of tests and also nothing detected.

I am going to try to cut of alcohol completely now ( i still drink a little bit sometimes), eat healthier and see what happens. I also bought curcuma and grape seed, which is supposed to help in case pancreas is inflamed or such. Please keep me updated, and I will do the same with you. I really hope we manage to find a way out of this.

Marcus, 

I agree cutting out alcohol and eating healthy is good idea. I have been doing this for the past 6 months, and although I do have some back pain still (left shoulder area and down left arm-- not sure if this is referred pain or not), if I stick to healthy low fat foods and no alcohol or caffeine, I basically have zero abdominal pain. Like you, my pain (when it flares up) is always under my right rib area and it feels like a "pressure" or swollen feeling. My pain never was more than a 5 out of 10. Mine would usually "flare-up" for a few weeks, then calm down for a month or so, then flare up again. I have also found that stress is a huge trigger for me, so trying to cut out stress and controlling anxiety (which I am terrible at) helps. 

Does caffeine/coffee bother you? This is the worst trigger for me and causes pain usually within 10-15 minutes. 

Ask about the HIDA scan. There are lots of people who have gallbladder function problems that show little-to-no stones/sludge on ultrasound scans. If that test comes in really low or high (or causes pain during the CCK part), then that might be the culprit. 

I am going to investigate the scan. You had your gallbladder removed and now your pain is even worse? This is my fear to be honest. A couple of doctors suggested removing it. I wouldnt have a problem if I would know its causing my issues. What are your problems since GB is gone?

My symptoms were really bad the first few months after it was removed. It could be that the surgery inflamed my pancreas, or that I have some sort of sphincter of oddi dysfunction. I am now 9 months out from surgery and still am unable to really eat what I did before the surgery-- I am just way more sensitive now-- the sight of oil/fat scares me. My stools were pale and floated for a good 3-4 months after sugery, as my liver was trying to re-learn how to produce and release bile. However, this may mean sphincter of oddi problems, as the gallbladder supposedly acts as a reservoir that can grow and reduce pressure in the biliary tract (if the sphincter of oddi is clamped shut).  If it is gone, then pressure goes up in the bile ducts, hence causing more pain. 

My pain location is always were my gallbladder was, so it confused doctors when the pain continued after removal. The head of the pancreas is really close to this spot, so it could be the culprit. I have never had pain on the left side of my ribs, always the right, at least 3-4 inches right of my sternum. I always though it felt like something swelling or bruised under my liver. 

If you have hida scan that comes back at like 5%, then that is likely a sign it's struggling and maybe inflamed. 

If I could go back I would have kept my gallbladder 100%. However, mine was hyperactive and the science behind that causing pain is much more obscure. I think the pain relief percentage is much higher in folks with under-active gallbladder issues (<20-30% or something like that). 

you mean by a HIDA scan or something else?