Looking for advice

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Hi all

I'm looking for some advice as to whether my chronic symptoms sound familar to anybody. In particular looking to know how concerned i should continue to be. 27 year old male.

Since May 2017, I've had significant issues in the upper abdominal region. It started as sharp pain in the upper left front per two months and developed into 24/7 back discomfort on the upper left and sometimes discomfort on the front + floating stools (occasional steathorrea) + occasional feeling hot for no clear reason. Around late 2017, I had several ultrasounds, a CT scan and two MRIs which showed nothing and waa told by the doctor that no more could be looked into.

Two years later and these symptoms remain. Most particularly, it is like somethhing is 24/7 dragging me down on my upper left back around the pancreas region. My stools have settled down but i do get daily feeling hot and my urine is often unclear. The main issue on a day to day basis is the back pain on the left that makes it impossible to feel comfortable.

As the issue has got worse over time, I fear it is a tumour on the pancreas that has got larger over time. However if that was the case I would assume i would be much worse now than i am

any thoughts greatly appreciated

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16 Replies

  • Posted

    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

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  • Posted

    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.

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  • Posted

    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).

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    • Posted

      Nothing ever showed up on a scan (Ultrasound, 2 CTs, MRCP), as I never had an EUS (but even this can miss early CP). However, based on my history, symptoms, triggers, and pain patterns (and lack of other diagnosis) my doc thinks it's early CP. I had a history (multiple years) of drinking beer daily, although I haven't touched the stuff in almost 2 years now.

      I have pain when I don't follow my strict diet/stop taking enzymes/eat a really large meal (I eat small meals now). When this happens I first feel it in my upper right back (deep ache pain), then if it gets worse I feel it under my upper right rib. Stools would float and I would have weight loss. Back when I didn't know my triggers, etc it would end up so bad I would throw up sometimes, ER visits, etc. This is why they figured why not try to take the gallbladder out, which did not help.

      So, it appears I am one of the individuals with CP-like symptoms (and triggers) that is unable to get a diagnosis via a scan, likely because there is not enough damage yet or enough time for stone development. If you read peer reviewed medical journals (and talk to Drs) diagnosing early CP is extremely difficult and typically is made in the absent of other clear diagnoses. Sometimes EUS can pick it up, but by this point I have spent 10s of thousands of dollars and had an organ removed, so I am done with tests. Even if I had an EUS and it showed early CP (side duct damage, inflammation, etc), my strict diet regime, enzymes, antioxidants etc would stay the same.

      I almost lost my job, friends and wife during the first few years of this and the anxiety it brought along with it was crippling. I had to completely change my lifestyle and be extremely strict with my diet to get to point I am at now.

      I suggest reading micronutrient therapy for CP by Dr. Joan Braganza. This is full of great peer reviewed research and clinical trial results and has some great suggestions.

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    • Posted

      Thank u for the reoly dear and im so sorry u going through this.i have steatorreah for 1.5 years and i afraid of cp.all clear like u .no pain .only toilet issue.many tests still uknown.

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  • Posted

    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!

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    • Posted

      The pain in the back for me is a deep bone pain. I've described it to doctors as the kind of pain that makes a dog want to crawl under the porch to die. It's unrelenting. It feels like cancer, even if it isn't.

      It can also set off the "through and through" bundle of nerves in my back. Triggering those can set off every nerve in my back at one time -- just by sitting wrong.

      Pseudocysts felt like an awful deep pain in my left abdomen, and frequent stabbing sensations.

      Burning sensations usually mean gastritis, which can be awful, too. Or gastroparesis. Basically, food getting backed up inside and being churned constantly by acid. You need to look at addressing that.

      The lovely acids that are getting "let loose early" have been eating my organs to the point where it ate through most of my portal artery. It would have been horrible if I hadn't insisted that the "nature of the pain has changed". Those are the magic words.

      I keep a daily pain log, which tracks food, beverages, activity, stress, etc. It can really help, because pancreatitis does evolve over time. And so does the pain.

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  • Posted

    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.

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  • Posted

    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.

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    • Posted

      Hello Fiocena, what you describe your mid 20s is very similar to the past 3 years for me. If you don't mind me asking do you know what the cause was? Have you been on a low fat diet this whole time? So, you don't eat but every 3 days currently?

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    • Posted

      this makes perfect sense to be fair, the less i eat the pain in my right side decreases,, if i keep active it gets better. as soon as i eat fattier foods i notice the pain/ache in my right side more. i am going to try for the next week to cut out all junk and eat small amounts, and then have a junk day and see how it feels

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    • Posted

      This is what I do, (stay below 20-30 grams a day) and small meals and it greatly reduces the pain or makes it go away completely. I haven't had cheese or anything fried in over 2 years now. I look at that food and it strikes fear into me-- weird sensation that my friends don't understand.

      Strangely, my worst trigger is coffee or caffeine. That will cause almost immediate pain that lingers.

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    • Posted

      i gave up meat three years ago this may or may not of helped. the next week i will have no coffee, alcohol, fatty food kept to minimum. i will post results next week ... good luck with your pains i hope you get some resolution

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    • Posted

      hI kluesy, to start with the hospital staff thought it was my gallbladder, but when I saw the pancreas specialist he said that was wrong and it was probably due to calcium stones in my pancreas, I think I have the hereditary type, my grandma had similar symptoms.....she died in 1981 but didn't have an autopsy so I don't know if it's true....I keep meaning to have the test. A low fat diet helps at the start of the problem, it reduces pain and any stool problems. yes I eat about every 3 days, sometimes not at all.....the pain now is constant and even if I ate a quarter of a sandwich the pain levels are that bad its not worth eating it and yes in June I was rushed to hospital with a hb of 73.....I was that bad they thought I had cancer of the blood, luckily I didn't but my body now absorbs nothing and I am totally relient on creon.

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