Looking for advice

hi i have same pain but on my right side .. for three years now .. have since had gallbladder removed pain still there. had camera down throat and showed just inflammation .. all tests come back clear but pain / dull ache remains .. sometimes when exercising or walking it goes .. lots of people on here with same/similar issues so hopefully you will get some peace of mind if nothing else

good luck and i hope you get it sorted

Those are almost exactly my pancreatitis symptoms. I only had pain on the right side before I had my gallbladder removed. The back pain has been a killer. I can't sit or stand for more than 15 minutes at a time now. Hence, I am on long term disability. And on my back a lot.

The heat and "unclear" urine are new to me -- maybe dehydration?

Before I became chronic, my doctor ordered a bunch of scans. They showed NOTHING. And I had been complaining for years. I can't explain why, except that maybe the scans weren't sensitive enough.

I suggest you get the scans redone to specifically look for pancreatitis damage. Pseudocysts can pop up quite suddenly, and so can other scary things, like calcifications and lesions. I was diagnosed in 2017 and in hell until this thing eventually kills me due to "complications". You need to get ahead of it if it is indeed CP.

Get to a proper gastroenterologist who specializes in pancreatitis and get the scans redone. Also ask for a fecal elastase test, which will evaluate how well your pancreas is working. Get yourself a hematologist while you are at it. Get tested for clotting disorders like Factor II or Factor V Leiden.

Make sure to avoid alcohol, cigarettes, eat soft / easy to digest foods, and ask for a prescription for CREON or ZenPep for help digesting foods. Alcohol is critical to avoid, no matter what caused this.

Be aware that getting pain control is going to be tough. Now is the time to start looking for doctors willing to prescribe opiods.

If it is chronic, you'll want to start looking into pancreatic transplant surgery, called "islet" because of the cells involved, formally known as TPIAT or TP/IAT. It's self transplant involving pancreas removal and can be a good option if you're a candidate.

Good luck, and let us know what they find.

I had the same sort of pain but on the right side, upper abdomen and the upper right back. Back pain was usually the first thing, then if it was bad pain under the upper right rib. Like you I went through the gauntlet of tests (2, CTs, MRCP, million liver panels, gallbladder function test, Ultransound, etc). Finally they decided it was the gallbladder and had that removed. Nope, not it-- no take backs with that organ. Very similar to Victoria's post.

I struggled with this for 2 years (age 33 at the time) before I convinced myself (and my doctor) this may be early/mild chronic pancreatitis, that typically won't show up on scans other than a EUS (even sometimes that misses it as well). I figured out my triggers (fatty food, alcohol, caffeine) and stopped them cold turkey. I then started taking pacreatic enzymes with my meals and also some other antioxidants. I started this about a year ago and today, with a strict diet, no alcohol or caffeine, I don't have any pain really. But, I am very strict with fat-- maybe 20-30 grams a day, max. If I slip up for a few days in a row then it returns.

Do you have any triggers? Is it driven by fatty foods/big meals? Alcohol? If the pancreas is inflamed then eating fatty foods (fried, etc) will not make it feel great (due to the generation and excretion of the Lipase enzyme). Also, studies have shown that smoking is bad for the pancreas as well.

From what I have read pancreatic cancer is usually a quiet type-- in that it can grow without people knowing, until it has spread or the tumor is big enough to cause symptoms (blocking bile duct, pushing on nerves, etc) at which point would most likely be visible on a CT/MRI scan. The fact that you had pain, clear scans, and are 27 (was 25 when it started), it is extremely unlikely that it is a tumor. Also, if you look up the time from onset of symptoms to diagnosis with chronic pancreatitis it is 62 months. It takes a while for there to be enough damage (or calcium stones) to show up on the lower res scans (CT, MRI).

What does the pain in the back feel like? I have been having similar symptoms for 2yrs. I even had an Eus which showed nothing of significance. When I feel pain its more of a burning and not stabbing. Im still clueless about whats going on with myself. hang in there! Good luck!

You're pretty young to have pancreatic problems but doesn't mean you don't have them. You should find a good GI specialist. Do you have a family history of CP, cystic fibrosis, Pancreas Divisum "PD" (born with two ducts) or PC? Blood work, regular endoscopy, and ultrasound all missed my PD, I had a CT Enterography which revealed atrophy of my pancreas which I researched and found that's usually associated with CP and told my primary who referred me to a GI. Once the atrophy was found, my GI ordered a MRCP (fancy MRI that looks at the working pancreas). My GI still thought my symptoms were IBS related (I had lost almost 50 pounds in a matter of months, I had pain so severe after eating I was scared to eat, nauseous constantly, vomiting all hours of the day/night, migraines, itching everywhere, my hair was falling out … the list can go on and on but the pain was/is debilitating). I still have a constant ache and days where I cannot get out of bed but there's a slew of symptoms when it comes to pancreatitis. The worst thing you can do is turn to Dr. Google. Ask for the fecal test, the genetic mutation markers test (screens for cancer), MRCP, and another CT … if they all come back clear then I would think you're good in the pancreas department. The pancreas is the hardest organ to diagnose. It took the doctors over a year to diagnose me and I was born with the condition. Due to my age and the fact my blood never revealed pancreatic issues they dismissed the idea it could be the pancreas from the beginning. I kept on insisting for more tests and then read the medical terminology from the reports. I know it's not easy and you're in pain but try and stay positive. Have you been screened for other conditions? There's referred pain, you feel it one place but it's actually in a completely different location. When my pancreas acts up, I feel it in my stomach, it radiates to my left side of the back and also up my shoulder or down my arm. Sometimes when my kidneys act up I feel it in my legs (I know sounds weird, but I'm weird lol). You can also talk to a dietitian and make sure you're not eating foods your body can't handle. You can become intolerant to foods at any age. There's also a sac of nerves behind the pancreas, maybe something is compressing them. You can try resting your pancreas to see if it improves your symptoms. You do this by not eating for a couple days. Stick to liquid diet only and after a couple days slowly incorporate food. If you get pain then go back to liquids, if there's no pain then continue with food. Eat six small meals rather than three big ones because it's easier on the stomach to digest. Usually if you have pancreas issues you have to limit your fat to 20 grams a day. You also have to watch the carb intake but for right now I would concentrate on your fat intake to make sure your body is digesting/absorbing it. You can order digestive enzymes online but they're not going to be the same as a prescription. Each individual is different and will require a different amount. I take 60,000 (two enzyme pills) will meals and a lower amount for snacks. The ones they offer online aren't strong enough. However, you can order them and see of they help at all. If they do then you can ask for a prescription.

I hope you're able to find answers, I know it's hard. Stay positive as much as you can.

hi, your symptoms sound familiar to me. when I was in my mid 20 s I started suffering vague symptoms, backache loose stools, vomiting, I always thought it was just my back, by the time I was 30 the back pain got worse, I was diagnosed with a bulging disc in my lumber region but kept saying it was higher up my back, but was told nothing more can do, the physiotherapist told me it might all be in my head lol. well when I was 36 I went yellow and had acute pancreatitis, from then on I knew what was wrong, although nothing showed on scans, Mrcp, eus....bloods were fine too, unless I had acute panc. it took a further 5 years to get a diagnosis, I have a good surgeon and he gave me a coeliac plexus block to prove that the pain was coming from the pancreas, it worked and I could eat and eat for 2 weeks it lasted, I was diagnosed with minimal change aka small duct chronic pancreatitis. at the beginning of this year now 46, I had an endoscopic ultra sound and it showed everything up. if you really want to know if you have cp, eat a very low fat diet, small amounts often for about 3 days, see how you feel (you should start to feel better) then the next day eat everything fried and high in fat. if you have cp the following day the pain will be back, worse than ever, so make sure you have enough medication. that's how I tested myself in the early days, now I can only eat every 3 days.....unfortunately it's a disease that only gets worse. don't worry too much about it being a tumour, they are quite rare at your age. do the food test then go back to drs and explain what happened. hope this helps.