Cyst on pancreas
Posted , 5 users are following.
Hi,
I would love some help...
Over the past year I have been experiencing pain in the epigastric area and right side under ribs. At times I experience back pain but I couldn't say that the pain is radiating through from the front abdomen. The pain is chronic, at best in the morning and gets worse in the afternoon. I experience pain (like heartburn) after I excercise, at times cops breath, bloating as the day goes on and fouls smelling gas
I have seen 2 gi speciliast, 2 surgeons and 1 pain management specialist. They have diagnosed me with functional disorder. I am not sure I agree.
All my tests have been clear with the exception of a 0.5 mm cyst found on the head of my pancreas. None of the doctors and surgeons seem to be concerned about this. They say it is an incidental finding and should not be the cause of my pain. This was found 6 months ago from an MRI and is still there on an ultrasound done a couple of weeks ago (hasn't grown). They also found scarring on my kidney and my gallbladder seems a little distended (all in the area of where my pain is).
My question is from the research I have done this could be a puseodocyat which from what I can understand is caused from pancreatitis. The radiologist called it a simple cyst. Is is possible that I could have chronic pancreatitis?
I have had the following tests...all normal which the exception of pancreas cyst, kidney scarring and gallbladder distended (no gallstones)
Blood (about 6 different times), checked allayed lipsase
Breath test
Gastroscopy x 2 (bile)
Colonoscopy
Tested stool
Ultrasound
Ct (chest and adomen) with contrast
2 x MRI (abdomen)
1 x MRI (sternum)
Laporoscopy
Stomach emptying test
Hida scan
Bone scan
0 likes, 15 replies
andrew14788 karen07883
Posted
Best
Andrew
DJ-RN andrew14788
Posted
I have Chronic Pancreatitis and the best way I know if I have another blockage by stones that move from the head of my pancreas into the main pancreatic duct causing occlusion and the lack of enzymes to reach my small intestine is when my stools become fatty and foul smelling. They float on top of the water. This means that your fats are not being broken down by the three main exicrine enzymes Lipase, Amylase and Tripase. Your stools can smell foul and float due to other medical conditions. Just because you have Pancreatitis doesn't mean they always will. Only if your enzymes are not excreting. 87% of people who have either acute or chronic Pancreatitis experience excruciating pain where they have to be hospitalized. 13 to 17% of people with Pancreatitis will not experience any pain, or very little pain. I happen to be one of them. If you were in acute pancreatitis it's safe to say that you would know it. Not because of foul smelling stools, but for pain like no other you've ever experienced. Again, there are a number of reasons why your stools might be foul and fatty. It doesn't mean that you have Pancreatitis. But given you have a cyst in the head of your pancreas there's a good possibility that you are in Chronic Pancreatitis. I would see a good endocrinologist and have this ruled out. Your pancreas serves two main functions. One, exocrine. Where your enzymes breakdown fats, protein etc. Two, endocrine. Where it helps to make insulin called glycogen. What is your A1C? Have you been running higher than normal glucose levels? If so, this might mean you are experiencing a disruption in your endocrine function. Know your numbers. Make sure your Dr. checks all of your enzymes and A1C/glucose levels at least twice a year. The only way you are going to know for certain if you are experiencing Pancreatitis is to have all of your dots connected by someone who specializes in this area. There's a good chance that your pancreas isn't the cause of any of your symptoms or pain. I wish you well. Keep us posted. I'm curious to know what it is that's making you feel bad.
DJRN
heather0315 karen07883
Posted
I am guessing yes a pseudocyst! They can cause reoccurring pancreatitis leading to chronic pancreatitis with that scaring! I had pseudocysts all around the common bile duct when I had an ERCP done in 2005 after years of pancreatitis attacks! He said I also had lots of scar tissue around the common bile duct that was sealed shut from lots of previous attacks! I also had sphincter of oddi dysfunction and they did a sphincterotomy opening the common bile duct which was blocked causing a back up inflaming the pancreas! I had this done prior to knowing I had the pancreas divisum. My other issue is the pancreas divisum which means I have 2 narrow ducts instead of one large duct! They can can blocked for a number of reasons! I later had gallbladder taken out to rule out any issues with stones.... even though they never saw them! It hasn't helped! I too am in pain mostly like an annoying uncomfortable nawing pain with nausea often , smelly gas, nasty stool sometimes clay colored, and back pain not always radiating around. I feel bloated all the time like a rock is in my stomach! Always tense and hard! I feel better when I don't eat! I would definitely look into seeing if it's chronic and continue to watch it! I think I have hereditary pancreatitis after reading way too much! I do plan to go to Shands in Gainesville Florida to see a specialist especially since I have the pancreas divisum as well! I believe I have a few different things going on and want to be genetically tested for the PRSS1 gene to see if it's a mutation! This would confirm if I have hereditary pancreatitis and to know I'm at risk for pancreatic cancer! My grandfather died from pancreatic cancer and my moms twin had liver and pancreas issues. I have been dealing with this since age 15! I'm 44 but suffered way too long and I'm scared not feeling right and starting to get sicker. Gut feeling it may turn to cancer. Whatever you do please seek another dr or make sure it's a very specialized dr with pancreas because otherwise your wasting time! Please let me know how things go!
DJ-RN heather0315
Posted
Surgeons wanted to do a Whipple Procedure on me. I told him I thought I was a candidate for an ERCP. He said I wasn't. I called a good friend of mine who at the time was head of GI at the Mayo. I sent him my files/films and he told me to fly up that he thought he could help me. They did. Surgeons and Drs are NOT always right. Had I had that traumatic invasive surgery and not gone the route I did, I don't even know if I would still be here. I will always have Chronic Oancreatitis because of four stones embedded in the head of my pancreas. My chances for pancreatic cancer went up 30 fold. I lost my dad to pancreatic cancer at age 59 and his mother to complications of Pancreatitis. That only makes my chances even higher developing it. I truly believe that Karen's cyst isn't being taken seriously and could possibly have Chronic Pancreatitis as well.
DJRN
heather0315 DJ-RN
Posted
Your right! I wonder If my pseudo cysts are calcium stones as well! After the first ERCP he nicked my bowl and I refused to let them go back in . He wanted to measure the 2 ducts I have with the pancreas divisum. I went to MCV in Richmond and the alternative was stents being put in. That's scares me being an RN too and of course I've read way toooo much! I am terrified of pancreatic cancer and hate how I feel all the time!
DJ-RN heather0315
Posted
I'd get another opinion. I think you have Chronic Pancreatitis
karen07883 heather0315
Posted
I am so sorry to hear that you are sufferring and for so long.
Thank you so much for your advice. I am seeing the surgeon who is looking into my cyst on Wednesday. He is not a specialist of the pancreas so i will see about getting another referral. I have seen six different specialists and even spent a week in hospital with no help. I keep on raising chronic pancreatitis and they are all sivk of me saying it. My bloods have been taken about 4 times with wverything normal (including lipase and almayse). We have to advocate for ourselves. Hopefully it isnt Chronic...
I hope you start getting some relief soon. Thanks again for taking the time to respond i really appreciate it
DJ-RN karen07883
Posted
Karen, I'm only a RN. I'm not a Dr. nor do I claim to know more than them. Sometimes I wonder if I don't given some of the Dr's we come in contact with. You wonder at times how they managed to get through medical school and their residency. Lol. Karen, I know one thing for a fact. My opinion on it will never waver because I've researched it a lot and have been told by some of the top endocrinologists in the USA. If a Dr. looks only at your enzymes such as Lipase, Amylase and tripase to diagnose and tell one that they are not experiencing Pancreatitis because these lab values are normal, they are dead wrong. Especially with one who has chronic Pancreatitis it's seldom that one will have abnormal values because they spike for only a short amount of time and by the time they are checked they will have returned to normal. Again, just because your pancreatic enzymes are normal does NOT mean that you are not in Pancreatitis. In patients who suddenly develop severe pain and have to go to the ER, their pancreatic enzymes (usually Amylase) will be very high because they are just beginning to develop "acute" Pancreatitis. Looking for them to raise in patients with chronic Pancreatitis is usually a waste of time! If I know anything about pancreatitis it is that! You can research it and ask any endocrinologist that question and more often than not they will agree. Don't be mislead by these Dr's who are telling you otherwise because they are wrong in most cases. You stay well my friend!
DJRN
DJ-RN karen07883
Posted
Karen, I didn't know your entire story, but when I saw where you stated you had a cyst in the head of your pancreas and Drs didn't seem to be worried about it, I'm here to ask you to get a second even a third opinion. I have Chronic Calcific Pancreatitis. In 2019 I went from 170lbs to 122lbs. I'm male. I went from Dr to Dr to try to find out what was wrong. I was literally wasting away. They misread my CAT scan and I was finally diagnosed with a 8mm stone occluding the main pancreatic duct. No enzymes were making it to my intestines to break down food. I flew to the Mayo Clinic and had lipotripsy on my pancreas then an ERCP with a stint. I've had zero symptoms since and now weigh 170. I have four stones embedded in the head of my pancreas. They are not giving me trouble at this time. Yet, I will always have chronic Pancreatitis. It was thought that I also had a pseudo cyst. I didn't. But if your Drs are telling you that a cyst in your pancreas isn't causing you problems, they may indeed be wrong. The pancreas is a very sensitive organ. It works in two ways. Endocrine and exocrine functioning. A cyst can disrupt the way the pancreas is behaving because it doesn't like any foreign things in it. Again, im not saying yours is, but I would definately get other opinions. Have the done an EUS on you? That's about the best way to get a clear visual of your pancreas and neighboring organs. I would not write it off. It sounds to me that it could very well be causing you pain. Pain is usually intense in the mid abdominal region that radiates thru to your back. It's a dull, grueling and horrific pain at times. Every now and then I will have pain now that I'm 7 years out. If I'm having pain from a small stone in the pancreas you could also be having pain with a cyst. No matter what type it is. I would go to a good endocrinologist and be worked up. It wouldn't surprise me if you too aren't in Chronic Pancreatitis. Again, I'm just an RN not a Dr. But I know one thing. Your pancreas doesn't like anything disturbing it. I refer to it as a "moody organ!" Good luck. Please make sure the check your lipase, amylase and tripase. And even if they are normal, you can still have Pancreatitis. These tests are best for diagnosing acute pancreatitis.
DJRN
karen07883 DJ-RN
Posted
Thanks so much for taking the time to respond to my post. It sounds like you have had quite the journey with your chronic pancreatitis. Mine may just be startinng. I am definately getting more opinions on this. I live in Australia and will do some research into where the pancreas specialists are. My cyst formed 6 months after i got sick. I just had an ultrasound and it is still there 6 months later. The pain is mild, I can work, but it is constant. They have said it is merely an incidental finding and it shouldnt be causing me pain. The research i had done myself states that if it is a psuedocyst it is caused from pancreatitis. How can these doctors not know this? These are surgeons that operate on liver, billary and gallbladder. I am amazed and how little these people know.
Thank you again....
DJ-RN karen07883
Posted
I agree with you Karen. It sounds to me like you are experiencing some problems such as your pain, even though pancreatic pain is usually excruciating and where it causes one to be hospitalized so as to receive IV narcotics, being off ALL food and fluids for a while to give your pancreas a chance to rest and work as little as it has to. But, that's not to say that one can't experience less pain. I'm one of 13 to 17% of people who have Chronic Pancreatitis who only experiences mild to moderate pain at times. Twice it was bad enough for my Dr. to put me on Dilauded on top of the two 10/325 percocets I take every eight hours most days. That episode of pain almost landed me in the hospital. But, given that I'm an RN, my Dr. agreed to let me do all that I needed to at home because I didn't want to be admitted. For the most, not eating for several days and only drinking water and sports drinks high in electrolytes. But, had the pain been more than I could handle at home by myself I would have been admitted. I have my internist, GI Dr. and a good endocrinologist who keeps close watch on me throughout the year for any sign of my condition worsening or developing pancreatic cancer. I believe I told you after they removed an 8mm stone from the main pancreatic duct, and still have four stones deeply embedded in the head of the pancreas caused my risk of developing pancreatic cancer 30 fold. Perhaps even higher given my father died from pancreatic cancer at the age of 59. And, his mother, my grandmother who also died from complications of Pancreatitis. It's scary because I feel like a ticking time bomb at times. But I'm in the best of hands and have many people watching out for me. Especially God. I'm glad that you are staying on top of this and taking your health and being in charge of it. So many simply think that their Dr. will always have their best interest at heart, and at times this isn't true. Dr's's and Nurses are overworked and understaffed and patients often get put on the back burner. Things easily slip through their hands and don't follow up with you. That's why people must take charge of their health and make certain that everything is done that was supposed to have been. I can't stress the importance of that enough. I'm sure you have learned a lot through your own research and even being here on this site. It's nice to have a forum like this to speak to others who are dealing with the same or similar things that you are. But, everyone is not always correct and you have to learn to consider their advice (such as my own,) and take it for what it is. Just because I'm an RN doesn't mean that I know more than the next person because that's not always the case. ALL of us learn together and try to be there for another and offer them different types of advice. Please keep all of us updated.
DJRN
karen07883 DJ-RN
Posted
It sounds like you have alot of good people around you looking out for you...i suspect that probably took a while to find them knowing what i know from specialists here in Australia. I went and saw my "new" specialist (not a pancreas specialist), however a surgeon (gallbladder/ducts etc).
So apparently my cyst is not a pseudocyst. He was obviously surprised and unprepared for the questions that i had to follow, ie what type of cyst do i have, how/why is it there. He couldnt tell me what type of cyst it was however said it definately wasnt a pseudocyst as it has different characteristics. I asked whether i should have an EUS to explore the pancreas further and he said that as i habe had 2 Mrcp they are just as good. He also enquired about my drinking habits and whether i habe had an acute attack. I said that i had never had an acute attack (my pain is manageable, ie i can work but pain increases with exercise. He said he isnt ruling out gallbladder even know all my tests are normal. He is going to do some tests for cancer markers to rule out cancer. These have been done before however before the cyst arrived. I felt like i wss a royale pain in the backside. I am going to go back to see my GP and ask for a referral to see a specialist of the oancreas tonget some answers on this cyst. He explanation was that the body does develop cysts and that they can be similar to skin tags on your body...my arguement is ofcourse relates to my pain. They are believing it is functional...that my brain hasnt turned off my pain signals...hmmm...not convinced on that one. The saga continues....hope you are having a good week!!!
DJ-RN karen07883
Posted
Thank you Karen. I'm so glad that you are taking charge of your health and insisting that what you feel should be done is. I don't know for a fact, but it does sound like you are in Chronic Pancreatitis. With a cyst present is something that the pancreas reacts to and doesn't like. It's a very sensitive organ and one that is easily upset. I would as well do all that you said you are going to do and don't give up until you are totally convinced if you do or don't have Pancreatitis. It sounds like this particular Dr. doesn't have or know all the answers. Please keep us updated. And if ever you would like to speak prvt just shoot me a msg. Good luck to you hun! Hang in there!
DJRN
pauline78442 karen07883
Posted
Karen, My husband started having acute pain on Friday May 26 and thought it may be food poisoning. I forced him to go to the hospital the next morning and he was admitted that afternoon. During the ten days in the hospital he had four ultrasounds, 2 cat scans and 1 MRI along with a scope to his stomach. He looked like he was five months pregnant with twins because of the swelling and his organs were shutting down. None of these tests found out the cause of his acute.
pancreatitis but his blood tests showed an elevated pancratic enzyme and liver bile. He now has a small cyst on his pancreatitis but the doctors said not to worry unless i gets much bigger.
He is taking a digestive enzyme every time he eats and I have changed his diet. He was short of breath, had extreme pain radiating through his chest and abdomen. His urine was the colour of coke and he was severely dehydrated. He was on morphine every four hours, antibiotics for infections and tylenol for his fever and total IV for 8 days to give the pancreas a rest. The doctors never did find the cause. In all he lost 28 pounds during two weeks and has managed to keep his weight steady now.
You have to cut out all alcohol, caffeine products, fatty foods and eat lots of vegetables and fruit. I know that when you are in acute pain like my husband was you can't even move. Drink plenty of water to keep hydrated. I hope that his information helps you.
DJ-RN pauline78442
Posted
It sounds like he went through hell. Thanks for all the tips. You're right, especially drinking. NO ALCOHOL! You are definitely asking for trouble if you do. I have chronic calcific pancreatitis and have a glass of wine occasionally. That's about it.
DJRN