I've been thru hell and back it seems over the last 4 months. This all started almost 2 years ago with occasional back back and pain just under mid breast bone in middle. it would come and go, with some attacks. Went to back doctor, not back. It came and went, starting in 2018, things started to get worse. March / April started getting really bad and has continually gotten worse. The pain in the back has slowly gotten very bad, comes and goes and radiates front to back, moves around from middle to right side and back. Had all the gallbladder test, thought we had it figured out with a 37% HIDA scan EF, but just did a HIDA yesterday it came back at 87% EF, i'm now back to my pancreas as a possibility. I have had overactive bowels for years but they got much worse during this last year, lots of diarreah, but now more solid but producing some fatty, greasy and some floating stools. I feel like I have the flu a lot, having to drag myself out of bed. The on / off dark urine started beginning of the year also, it seems I get dehydrated really easy now maybe that is the cause but it goes from a darker yellow to clear and back. I don't really notice that meals produce the pain, it seems to come and go sometimes light sometimes with a vengeance. I have a good bit of fatigue also and have lost 10 pounds in the last 6 weeks or so seems like losing muscle, people telling me I look thinner and I can feel it. I have had starting last year, 2 abdominal ultrasounds, 2 CT scans (one with pancreas protocol), 3 HIDA scans and 2 Xray's, endoscope and colonoscopy in the last 12 months. The only thing that ever showed a bit was a almost abnormal HIDA at 37% EF and a little bit of sludge in gallbladder and a small hiatial hernia and a inflamed esophagus which meds have fixed. My GI said take out the gall bladder and we will go from there, surgeon said same thing, my internist said no it's not that.... which is why I am here. I go back in to see him today, I want to demand a MRI / MRCP and if that is normal, a EUS. I don't know he will order both. I am nervous about the possibility of Pancreatic Cancer, but i'm 43 and a bit young for that and the 2 CT's do make me feel much better about that. I have read that Chronic Pancreatits is difficult to diagnose. All of my bloodwork was normal except for a just above the high range ALT liver enzyme for one test and quickly back to normal. All else was mostly normal. My WBC and RBC have always been just below the low number or just above the low number for the last 5 years, but all in all the bloodwork has been normal. I did the CA 19-9, CEA and other tumor markers, all normal and pancreatic enzymes normal. I'm at a loss, but are feeling miserable and in a lot of pain. Looking for some advise, is this possible pancreas issues that anyone has experienced before and should I take that gallbladder out?
I don’t know about taking the gallbladder out. I had mine removed in my early 20s and I’ve been pretty miserable ever since, it’s caused horrible ibs symptoms and I still have phantom pains from it and I have fatty stools from the removal. If it absolutely needs to come out then of course you should get it out but if you can repair it yourself I would try that first. I’m not sure if your symptoms are linked to pancreas or not because the gallbladder and pancreas are kind of similar with the digestive properties. I’m not a dr tho just my personal experience.
I second Heather. I have also been dealing with similar symptoms as you for almost 2 years and have had every possible test except for EUS. I had a 96% EF on my HIDA and they said over-active and remove-- worst decision I have made so far. I had mine removed last December and I haven't been the same sense. Symptoms instantly just got worse for me and I can't eat the same foods as I did before. If I touch fatty foods I am in pain-- does fatty food cause issues with you?
Something to think about outside of CP is sphincter of oddi dysfunction. It can cause symptoms similar to CP and a bad gallbladder. People who have this only get worse after the gallbladder is removed.
As far as something more sinister, 2 years is a long time to have symptoms and clear scans for it to be P cancer. I am 35 and this is what I have to remind myself when I go down that road of thinking (I have had a MRCP as well). In contrast, the average time from onset of symptoms to diagnosis in CP is 60+ months. Not to get too personal, but do you have a history of alcohol? This can be a big trigger for CP.
You can ask for an EUS but they don’t usually perform them for diagnostic purposes because it can cause a pancreatitis attack. If you really think it’s your pancreas then ask for a MRCP, it’s the gold standard of noninvasive tests. As for the gallbladder, that’s tricky. I had mine removed back in 2003. No one advised me I had to change my diet and I was running to the bathroom every time I ate something greasy. Needless to say I learned, once you have it removed, you have to stick to a low fat lifestyle. If you don’t remove it, it can start producing stones or become infected (really depends on the condition of your gallbladder). As for pancreatitis, I was born with Pancreas Divisum (rare condition where you’re born with two pancreatic ducts that never fused together). Due to the PD it caused CP. I’m only 38 and really young to have CP. Normally, a person is diagnosed with acute pancreatitis first and then over the years it can possibly develop into chronic (not always the case). I had an ultrasound, endoscopy and blood work all come back normal. It wasn’t until the CT Enterography show atrophy of my pancreas. The MRCP was ordered and the Pancreas Divisum was diagnosed. I was then referred to a pancreas specialist who performed an ERCP and the chronic pancreatitis was diagnosed. All these tests took over a year before I was diagnosed and I was born with the condition. I started to get really bad symptoms in 2014-2015 but didn’t know what it was. I lost nearly 50 pounds in a matter of months. I had pain after eating. The abdominal pain was on the left side and radiated to my back. The pain was so extreme, I was literally scared to eat. When I did eat, I had a 50/50 chance of keeping my food down. I have other medical conditions and was already on nausea and pain medication which did nothing for me at home. I was waking up in the middle of the night to vomit, my stools were clay/pale color (bile was backed up in my ducts and that’s the cause for the color change). My hair started to fall out, I developed kidney stones due to malabsorption. The list of symptoms can go on but I tend to forget because I deal with so much everyday. If it were your pancreas then you would be in debilitating pain. When my gallbladder was acting up I remember I had flu like symptoms and felt like crap. Once it was removed I felt better but they did have to do exploratory surgery the following month because I started vomiting (little did the doctors or I know it was my pancreas back then). I’ve been in/out of the hospital throughout my life and none of my blood work has ever showed pancreas symptoms. However, my liver enzymes elevate all the time. I recently found out I’m a carrier for hemochromatosis which means iron overload. It will affect your pancreas and liver and it’s more common in men. It may be something you might want to be screened for. The doctors were quick to dismiss the pancreas with me due to my age but it’s not common for people to get chronic pancreatitis, pancreas cancer unless you have a family history, cystic fibrosis or Pancreas Divisum if you’re under 50. My pancreas specialist advised me pancreatitis is common amongst the elderly because it takes years to develop.
Thanks for your response, I do drink, usually a drink or two every day, sometimes a good bit more on weekends. I am not a heavy drinker, just enjoy a few a day, but I would consider it light to moderate. I'm not the stumbling drunk guy on weekdays lol or even weekends but the occasional party I do get a hangover lol. This is been a tumultuous ride tho, I sure am worried about the PC stories you hear, but not the symptoms seem like CP, but who knows. I have read on the spincter of oddi dys, not sure. I will demand the MRCP today.
You’ve been reading my mail, as the saying goes. My chronic pancreatitis followed almost word for word your path, and it was a simple x-ray that finally diagnosed and confirmed the chronic pancreatitis, due to the calcification that showed up only in the x-ray. None of scans or MRI showed any signs of the disease, I had my gall bladder removed because there were “signs of sludge”, should have left that alone, and had appendix removed, supposedly had “signs of inflammation”. After almost two years of every kind of treatment and pain control, I was talked into a Whipple surgery...BIG MISTAKE. Don’t let them operate on the pancreas! Not only did it not solve anything, it made the pain worse, and made me an instant diabetic.
There isn’t a lot to be done, and opiates are in your future if not already part of your life. Resist the temptation to continually increase pain killers, you’re going to have to find a level of pain you can deal with. I’ve been way up the scale more than once, and have to go thru withdrawals and more to get to the point where less medicine has much effect.
Good luck to you, you’re in for a helluva ride, I’m sorry to say, though knowing what’s wrong is definelty better than worrying about cancer. Ask for an x-ray, if yours is “calcific pancreatitis” you’ll know right away. There are other causes for chronic pancreatitis, and they are not all related to alcohol abuse, despite what most doctors will tell you. If alcohol were the primary cause of chronic pancreatitis, there’d be a whole lot more of us......there’s a whole lot more alcoholics out there that don’t have pancreatitis. Go figure..
Yea every time I eat anything fat or greasy I’m in so much pain the whole next day and I feel sick a good portion of the time. It sucks living like this but I didn’t really have a choice on gallbladder removal because mine was full of stones but they never told me what makes stones develop so the first time I had an attack I probably could have saved my gallbladder had I known but I was young and naive.
Yeah, I shouldn't have listened to my surgeon-- they just want to cut and make a buck. I had to cut any form of caffeine out of my diet (instant pain), most fats and alcohol. Alcohol is the least trigger, but I don't want to poor fuel on a smoldering fire, as to say.
I started taking pancreatic enzymes (pancreatin) about 4 months ago and this settles my digestion. It also seems to knock the pain as well, as my last flare up was over 2 months ago. If I stay really strict with diet and take the enzymes I barely have any pain/discomfort. Skim milk also seems to be a trigger now, which sucks as I love cereal.
Where do you get these enzymes? I think I would like to try them to see if they help me.
I hope you don’t take offense to what I’m going to say but even one or two drinks a day is too much for your body if your having all these symptoms, I would stop the drinking to maybe once or twice a week because alcohol could be aggravating your pancreas. I would just go off of it for a week or so and see if you feel better, if you don’t then that’s probably not it but it would be worth a try.
No offense at all my plan is to quit totally but I’m sure I’ll cheat every now and then. I also plan to get on a diet for it and maybe try some pancreatic enzymes.
I’m going to have an MRCP the Dr ordered it today, if that doesn’t show PC then I told him my best guess is some type of pancreatitis as I fit the symptoms. He didn’t disagree so we will we. Thanks for the advise have a great day!!
Thx!!! Sorry to hear your troubles, that is my guess at the moment is CP. MRCP was ordered today so that will be coming soon.
Of course. Keep us updated on what they find please?
Wow u have been on a rough ride. I’m at a los with my stuff at the moment but thank u for the info I will keep u updated what the MRCP says
I m T1D from last 35 years, Got CP 6 months back. I start feeling swelling at upper abdomin. Pain used to start from back and side, as if their is some issue in kidneys. Never realised that it will be CP. Did MRCP.. Got 13mm stone on pancreatic head, dilated pancreas. Dr adviced me enzymes. I got some relief but I still feel pain once or twice in day after eating food. Pain is horrible as if I m unable to move my back downwards. Issue is also related to Bile duct. Done CA19-9 test which came as 2
All other reports normal. Went to another specialist, he told me to go for surgery and get that blockage remove. He may cut some parts of tube which is blocking pancreas to function. I have decided I won't go for any surgery. Will bear pain as long as life is. Once a mechanism gets punctured it never remains the same. Lost 10 kgs in last 6 months. I will flow with life as it takes me. I fought T1D for 35 years.. Now I m. 45..will fight CP.
Digestive enzymes are a prescription. There’s different doses and different brands. Dependent upon your pancreas condition, sometimes your pancreas needs enzymes with every single meal (even snacks) and sometimes just regular meals and your doctor will prescribe the dose accordingly. There are enzymes sold at stores but they aren’t close to the milligrams the doctor prescribes. For example you may come across enzymes that say 100 milligrams but the doctor actually prescribes 12,000 a meal. It really depends on the person and their condition. I don’t recommend going out and purchasing enzymes. Furthermore, I was prescribed a particular brand and was allergic but found another one I wasn’t allergic to. There’s a test that will tell you if you need digestive enzymes, it’s called an EPI test (fecal test) it measures the amount of enzymes your body produces and absorbs.
Does movement or walking or doing anything aggravate your pain?
As Shortie mentioned they can be prescription based, but you can also get them over the counter. My doctor suggested I try them and instead of going the expensive CREON route (prescription), I ended up using pancreatin by Now foods. I tried a few others, but they didn't agree with my stomach. For the most part, the prescription ones and the over-the-counter are the same (based on a pigs pancreas), just the concentrations or the coating. There are some others that I believe are plant based, but I have not tried them. Lipase concentration is what you really need to pay attention to, as that is that enzyme that breaks down fats and causes strain on the pancreas if it is inflamed. That is also the value they typically look at in your blood during an acute attack.
Have you been checked for kidney stones? I developed kidney stones due to CP. I never had kidney problems prior but I started to get back pain in the lower area and went to the doctors and found out I had three stones. The urologist advises me malabsorption causes it, and it’s common for people with CP. I have to drink lemon water to try and prevent them but they can develop in as little as three months. Living with CP is painful enough but at least I’m aware of the kidney stones now. Those things hurt!
No does not seem to help it or make it worse.