Pancreatitis pain
Posted , 7 users are following.
Can anyone tell me if Pancreatic pain can be felt if you love e on your left side? Sometimes when I'm in bed and lying on my left side it's painful. If I lie on my back the pain is worse. I have also developed oily bowel movements that sometimes float. I have had 3 Amylase blood test before with slightly raised results but nothing was done. I am now due another one and if it is not normal I am going to demand something is done as I have too many symptoms to be ignored.
1 like, 25 replies
Hot-mama0816 sharon2510
Posted
Hello Sharon2510,
First I want to tell you how sorry I am that you are having pain and not getting any real results for it. If possible I'd recommend getting an appt to see a pancreas disease specialist. ( hopefully your insurance will cover appt with a specialty doctor without a referral) explain to pancreatic specialist your symptoms and what your dealing with and get some answers and results and a treatment plan. As for you question with the pain being bad when you lay on your left side and even worse laying on your back, I have the same issue with laying on my left side and my back, but I have found that if I prop myself up on 3 pillows I can lay on my back without the excruciating pain it causes if I lay flat. I have been dealing with this pain for 7 months and have been to 2 different doctors before CT scan was done and they found a cyst on the tail of my pancreas that was 2.5 cm. I then saw pancreatic specialist, which we only have one in the whole state, but he referred me to a gastroenterologist to have an ultrasound scope procedure to be done and get pictures as well as drain the cyst and have the fluid biopsied. Had that done, but I still continue to have pancreatic pain everyday. Some days I can eat something and be fine with it and eat it another day and be doubled over in pain. There is also days where I will vomit from the pain or something I ate didn't agree with me. So day to day I don't know if my normal foods that are not fatty by any means will be just fine or if It will cause me issues. They thought the cyst which was not cancerous was what was causing me the pain, however I still have pain and will go back to my pancreatic specialist next month which will be the 3rd month since I saw him after cyst was drained and he was going over the results with me and he will do either an MRI or CT scan and blood work to see if my pancreasis is still inflamed and also to see if the cyst came back. My family dr is who I have my pain contract with and he is absolutely amazing, however even with all the tests, scans, and blood work I still don't have a diagnosis or treatment plan. It is VERY frustrating. I am a little different then most people that have pancreas issues, my gallbladder was removed in 2005, I also have an auto immune disease that attacked my thyroid, and I have anxiety. I don't drink and never was a heavy drinker. I'm 35 yrs old with 2 kids and I don't smoke either. I have no family history of any pancreatic issues. I am having blood tests done to Check for an auto immune disease pancreatitis, but the only confirmed things after 7 months of these dr appt is that it is pancreatitis of some sort and that I'm too young to be going through this with all my health issues for the last half of my life. I'm like ok great, but what are we going to do about it. Like I said I have 2 kids, my son will be 9 this month and my daughter is 5. Living this way is not something I want to be doing, I get extremely tired every day between 1-2 in the afternoon to the point that I have to take a nap. Literally like exhausted, get dizzy spells, and have to lay down and take a nap. Then when I am awake I'm either hurting and have to take narcotic pain medicine to manage my pain, vomiting whatever I ate, or feeling blessed that I was ok with that meal and try and make it through the next thing I eat. However there isn't anything I have found that agrees with me 100% of the time. It might be fine one day and the next time I eat it, it doesn't agree with me. So I just try and stay hopeful and and Thankful, just take it one day at a time, one meal at a time. It also causes pain if I don't eat. So just try whatever and I just do small portions multiple times a day instead of 3 main big meals. It seems to work better for me that way, but from what I read and hear about pancreas issues is that every case is different and a regimen that works for one may not work on the next. So just know you are not alone, there a people out here that understand what your going through and can offer you support, helpful tips, and to just listen if need be. I wish you the best of luck and hope that they give you a diagnosis, pain management, and treatment plan. Also if their first suggestion is to remove your pancreas of partial, go get a 2nd opinion. You only get one pancreas and without it life can be more difficult than it already is and once they start cutting on it, it causes permanent damage and no repairing it. The only way to repare a pancreas is to do a transplant and that isn't even a guarantee. So just remember that and if you don't like or agree with what they are telling you about your symptoms, then find another dr or specialist. Good Luck Sharon! After you see the dr, please reply to me as to what they said it is and what their recommended treatment options. I'm curious if you and I or anyone else that is going through this gets the same answers and treatment options... thank you!!!
Sincerely,
Stephanie
(Hot-mama0816)
sharon2510 Hot-mama0816
Posted
zadda57 sharon2510
Posted
I also have left side pain, can be pretty severe, just under my ribs. It really hurts when I lie on my left side when "this" is flared up. I'm guessing pancreatitis but not sure...
Shortie79 sharon2510
Posted
Hi Sharon,
First off I want to say I'm so sorry and I feel the same pains you do as well as your frustrations. Last July I started getting abdominal pain that radiated to my back (left side). I had blood, endoscopy and ultrasound all come back normal. In January I had a CT Enterography performed. That CT showed atrophy of the pancreas (usually associated with chronic pancreatitis). I'm located in the states therefore I see a primary doctor. My primary doctor said she saw no reason for my abdominal pain until I told her atrophy of the pancreas is normally associated with chronic pancreatitis (I used to be a paralegal therefore I do a lot of research). My doctor sent me to a GI specialist who performed a MRCP (special type of MRI) which revealed I had Pancreas Divisum (congenital abnormality where you're born with two pancreatic ducts that don't fuse into one). Pancreas Divisum can also cause chronic pancreatitis but not one doctor has diagnosed be with chronic pancreatitis, even though I have all the symptoms and tons of pain!! I can't lay on my left side and have more pain at night when trying to lay on my back. I have to prop myself up at night in order to sleep. The GI specialist put me on acid reflux medication and digestion meds … which improved some of the pain but I still get pain when I eat just not as bad. On the days I can't eat solid foods I drink Ensures and that helps with the pain too. I went from 154 pounds to 106 pounds. Although I have atrophy and Pancreas Divisum the GI doctor diagnosed me with IBS therefore I asked to see a pancreas specialist. I'm still waiting to see that doctor. Pancreas Divisum is rare and only 5-10% of the population has it but it's very hard to diagnose without the proper tests. Only a MRCP or ERCP will show it. Unfortunately once your pancreas is atrophied your blood work can appear normal because your pancreas has started to digest itself therefore it's not producing the proper enzymes. I also have other medical issues (autoimmune thyroid disease) nerve disease, the list can go on but nothing compares to the pain of the pancreas. I'm only 37 and the doctor stated someone of my age shouldn't have these problems. I was checked for cystic fibrosis because of my age before I found out that I had Pancreas Divisum. I just wanted you to be aware that a regular CT doesn't show everything. You need to ask for a MRCP, EUS or ERCP. They may be reluctant to do an ERCP because that test itself can induce a pancreatitis attack but it's the only test that can really look at the pancreas … unfortunately it's an invasive procedure. The MRCP is a noninvasive scan and is used more often in the states. I've been going through all types of tests since last July and have seen many doctors. If you have any questions feel free to ask.
Lindy1234 sharon2510
Posted
I have been to ER twice in the last three weeks with acute pain from my mid stomach to my back. I've They ran all tests--nothing. Blood work--enzymes elevated a hair otherwise normal. The ER Dr. diagnosed it as acute pancreatitis, the on-call gastro as gastroparesis which i do have. But this was different. I was dehydrated so they gave me fluids and morphine for 2 days clear liquids for one. I was starting to feel a little better then they fed me lunch of chicken and carrots and discharged me. They let me out too soon and never should have given me solid food. Well, by the next day I was right back in the same shape. After several days when I couldn't stand the pain any longer I went to the ER again. They gave me fluids and morphine, kept me over night and discharged me. I am so frustrated. I see my gastro today and I am going to have a serious conversation. Supposed to have the HIDDA test on Thurs. Have been living on Ensure, almond milk and protein powder for over 2 weeks. Something's got to give!I have been to ER twice in the last three weeks with acute pain from my mid stomach to my back. I've They ran all tests--nothing. Blood work--enzymes elevated a hair otherwise normal. The ER Dr. diagnosed it as acute pancreatitis, the on-call gastro as gastroparesis which i do have. But this was different. I was dehydrated so they gave me fluids and morphine for 2 days clear liquids for one. I was starting to feel a little better then they fed me lunch of chicken and carrots and discharged me. They let me out too soon and never should have given me solid food. Well, by the next day I was right back in the same shape. After several days when I couldn't stand the pain any longer I went to the ER again. They gave me fluids and morphine, kept me over night and discharged me. I am so frustrated. I see my gastro today and I am going to have a serious conversation. Supposed to have the HIDDA test on Thurs. Have been living on Ensure, almond milk and protein powder for over 2 weeks. Something's got to give!
Shortie79 Lindy1234
Posted
Hi Lindy,
I have also been diagnosed with gastroparesis on top of Pancreas Divisum. Are you on Reglan for the gastroparesis? Before the GI specialist put me on that medication I was in horrible pain but it helped me so much. My blood work is always normal (my alt enzymes might be elevated a little but other than that nothing ever shows up). I can't take digestive enzymes because I'm allergic to them. If you haven't been tested for EPI, I would ask for that test. If your food is sitting in your stomach then it'll cause you even more pain! I was suffering for 9 months before I was diagnosed and put on meds.
Lindy1234 Shortie79
Posted
He wants me to go on Reglan but I'm afraid of the awful side effects. I am trying Domperidone. What is the test you said I should ask for?
Shortie79 Lindy1234
Posted
Hi Lindy,
The test you should ask for is a MRCP. It a special type of MRI which is noninvasive. There's also an ERCP but it's an invasive test and can give you a pancreatitis attack (I'm currently scheduled for one). The MRCP is the test the showed I have Pancreas Divisum. As for Reglan, I'm on the lowest dose possible … and I haven't had any side effects thus far (usually I'm a side effects queen). Reglan has helped so much with digesting my food it's been a life changer for me. I'm aware of the horrible side effects, and I even have a neurological disease (Reglan has a neurological side effect) therefore I had to really think about taking it. I don't know how well your medication is working for you but if it's not working well, I would recommend switching for a couple weeks and if you don't notice any side effects within that time period then you should be safe. Again I'm on the lowest dose (I also have a thyroid autoimmune disease Hashimotos so I usually burn meds off quickly or my body becomes immune to them) but Reglan keeps working. I'm scheduled for the ERCP in two weeks. I will keep you updated if you want. Hope all is well and good luck with everything.
Lindy1234 Shortie79
Posted
Hi Shortie79,
Yes, I want you to keep me updated. I've read so many posts on those 2 tests that say they would never have another one. I am going to see another doctor and get a second opinion. From my reading, I had an acute pancreatic attack when I went to ER two different times, even though the enzymes level were not high.I've needed to go to the ER for pain med and fluids, but what's the point. I've been in pain for 3 weeks. My GI dr told me Monday that all the tests are normal.He Has me Having a MRI on my mid back to see if there is a pinched nerve. He said there is nothing more he can do and insinuated that it was all in my head. No appetite. Living on Ensure and protein powder. When I can eat again, maybe I'll try the Reglan.Awaiting your apply.
Shortie79 Lindy1234
Posted
Hi Lindy,
The MRCP is an uncomfortable test but it's just another type of MRI … if you've had an MRI then you can withstand a MRCP. I will say I do think it upsets the pancreas so you might not be able to eat afterwards for a couple days. The ERCP is known for causing a pancreatitis attack therefore I can see people not wanting that procedure (it's not just a test, it's a procedure). If a person has Pancreas Divisum it won't show up in a regular MRI, CT or ultrasound. You have to ask for a CT Enterography or MRCP at least that's how they caught mine. When I had the CT Enterography it showed atrophy of my pancreas then I had the MRCP which showed the Pancreas Divisum. Another thing with blood work … if you have high cholesterol, your blood can appear normal (I don't know why, just research I've come across). Medication can also have an affect. Medication can also cause pancreatitis, so I would look up the side effects of the meds you're taking. It took a year for me to get the diagnosis and I even have tests that stated it's all in my head before the CT Enterography. I was the one that pointed out to my dr that atrophy is usually associated with chronic pancreatitis. If I didn't do research I may not be where I am today. Be your own advocate and don't give up! Doctors are quick to give up when they can't figure it out. Watch your weight, stool colors, hair loss and other pancreatitis symptoms and start to journal them. I was just in the ER yesterday morning with both AST and ALT enzymes highly elevated and the ER sent me home. They should've admitted me but I'm grateful they didn't or else I would've missed my appt with the pancreas specialist. You can also ask your doctor for a stool test for enzyme deficiency called EPI. That also mimics the symptoms of pancreatitis. I'll keep you updated and good luck.
Lindy1234 Shortie79
Posted
Had the HIDDA scan today to ck my gall bladder. Don't think they will find anything. I am going to see my GP on Mon. Explain to him every thing that has gone on and see if he'll do further testing.Yesterday the pain in my mid stomach to under my left rib cage subsided, though still have the burning.There hasn't been any nausea in a few days so I'm thankful to God for that! Still pretty much live on protein powder and Ensure. Today I managed to get a half a cup of chicken noodle soup down. Didn't eat the chicken. Managed to get 36 oz. of liquid, counting the soup. It was a struggle, but I know I need the fluids, or I'm going to have other problems. If it wasn't pancreatitis, I don't know what else it could have been. Sounds like I need a CT Enterography next. Will ask the dr. about it on Mon. How is it done? Invasive? I've lost a lot of weight not sure how much and the hair loss is ridiculous. Even my stylist commented the other day. My sister died of pancreatic cancer at the age of 44. I will be 64 in 10 days. Thank you for taking the time to post to me. You've been very helpful. Will keep you posted!
Shortie79 Lindy1234
Posted
Hi Lindy,
I didn't know you had a family history of pancreas cancer. First ask for genetic mutations blood test. Certain mutations will tell you if you're at risk for developing cancer. The pancreas specialist I saw advised me that they can actually remove the pancreas and make another organ work as the pancreas. The other tests I would ask for is a stool test to check for EPI, and also the MRCP (which is designed especially for the pancreas). The CT Enterography will look at your entire abdomen. The CT Enterography is uncomfortable as well. You have to drink 32oz of barium (if you're allergic to contrast you can't have this test) and hold it in your stomach for the scan. The biggest difficulty is drinking so much when you're in pain. I have also suffered a lot of weight loss (48 pounds and I'm 5 feet tall). I'm actually 12 pounds away from being under weight. I am also suffering hair loss as well. I would ask to have your thyroid checked. If your thyroid function is normal then have your parathyroid (adrenal glands) levels checked. With a family history, your doctor should be doing more tests! I'm only 37 years old and suffer in pain every day, so I know exactly what you're going through. I basically have the same diet as well. One thing that has helped is eating oranges. I can't drink the juice but I can eat them. For some odd reason it helps with the pain. However, be careful because too much vitamin C can cause kidney stones (which I got 4 of them out of nowhere). I don't know what. HIDDA test is but I don't have a gallbladder, appendix, uterus anymore. I've had a surgery every year from 2002-2016. I've had my fare share of medical issues and therefore I don't give up when I know something is off in my body. Only you know your body. Furthermore, if you don't like your doctor then go to a different one. Although sometimes a pain in the you know what, it's better to start with someone who actually listens. I find that female doctors listen more but my pancreas specialist is actually male. He has given me more knowledge then the prior GI specialist. A primary doctor will not know what to do. I'm sure your staying away from alcohol as that will cause an attack. They also say eat more small meals because it's less stress on your organs but when you can't eat solid foods it's kinda a waste to try. If you have a questions feel free to ask. I've had a ton of tests … right now my Ast/Alt enzymes are elevated but the ER did nothing for me. Don't waste your time going there. They treat you like crap (at least in the states). I sincerely hope you get answers quick but it took so long for me to get a diagnosis, don't give up and don't let them get you down!
Lindy1234 Shortie79
Posted
My GI dr. basically said that here was nothing more he could do for me, so I don't see him running any more tests. He said my pancreas looked fine in the ct scans, so there was no prob there. The HIDDA test looks at the functioning of the gall bladder itself, at the bile ducts to see if they are functioning properly. I really don't think anything is going to show up. How long does acute pancreatitis last?What the difference between a ct enterography and a barrium stomach test? I take thyroid too. 0.138. Can too much cause hair loss as well? I just don't think I could drink all that barrium without throwing up. Never heard of ast/alt enzymes. I thought my GI dr did listen till all this came up. I'm on Medicare/Medicaid, so I'm limited on my choices. No, I won't waste my time going to the ER unless I just can't stand the pain. Are you on pain meds? If so, which ones? I'll have a heart to heart talk with my gp on Mon. Glad You told me about the vit c, cuz I was ramping up on it. Maybe I should see an internist if my gp is of no help. It's going to be hard to find another GI that I can see. Talk to you later, my new friend!
Lindy1234
Posted
Hey ! My computer is going to be in the shop a couple of days ,so that's why I can't communicate with you right now. Hopefully it won't take them too long. I'll get back with you as soon as I can.
Shortie79 Lindy1234
Posted
Oh how I feel your struggles. There's no difference between a CT Enterography and a barium test, they are basically the same thing. You drink the contrast and they see how well it goes through your intestines. It was hard to drink but they give you an hour to drink it. Your doctor should have ran a blood test that checked your enzymes. Yes I'm on pain meds called Dilaudid but I also have a nerve disease called Complex Regional Pain Syndrome and I was in pain meds before the Pancreas Divisum pain started. The pain meds don't touch the pancreas pain. I'm on Medicare as well so I know that struggle too sweetie. It took me over a year to get where I'm at and I had to keep fighting. I haven't ever been diagnosed with pancreatitis but I know people who have and usually an attack can last up to a week sometimes longer depending on how bad. I have all the symptoms of pancreatitis but never been diagnosed … my pain usually lasts a week. I normally just drink Ensure a couple days and eat a few oranges and the pain gets better. I'm also on Reglan and Bentyl though. Maybe ask to get on those. Reglan really helped me digest my food and it was a game changer for me. I know there's bad side effects but it's the one medication that I didn't get the side effects and I have a numerological disease so I really had to be careful when I chose that medication. The biggest side effect is lip smacking and if you feel it starting then stop the medication and it should stop the lip smacking. I know how scary this is because I'm dealing with it too. I'm here for you!
Lindy1234 Shortie79
Posted
I'm back. I had the barium test about the same time I had the gastric emptying test last year. I had Dilaudid the second time I was in the ER when the morphine didn't touch the pain. That's absolutely the worst pain I have ever felt. My stomach pain lasted for almost a month. It hasn't let up all the way, but it's a whole lot better than it was. Still not really eating. Ensure mostly. Kinda afraid to eat. Still have no appetite. Lost weight which didn't hurt my feelings any! Went to my primary Dr. yesterday. He ordered a MRI and a blood test to check for PC, but he told me point blank that it was psychological. I'm having both MRIs done next week, so I wait and see before I decide what to do next. It's making me start to think maybe it is in my head. Know what I mean?There is a dull ache in my left side around to my back. I'm trying real hard to stay hydrated, but I don't want to drink anything. I'm not taking my Domperidone or Reglan right now cuz I'm not eating anything. Do you have pain with the Pancreas Divisum?
Shortie79 Lindy1234
Posted
Hi Lindy,
Yes I have pain with Pancreas Divisum. It's actually known for causing abdominal pain. I know the feeling of thinking it's all in your head and if you focus on it, you might notice your pain gets worse. I try not focusing on the pain and look for other outlets. If you have any hobbies try those. Also leaning forward sometimes helps with Pancreas pain. I also know the feeling when you're scared to eat but you need something in your system to keep fighting. Try talking to a nutritionist because you may have food intolerance and not know it. Regular doctors won't know what to tell you, only specialist will (something I found out the hard way). I hope they find answers soon!
Lindy1234 Shortie79
Posted
Hi there!
The pain in my side is only a dull ache today. I ate some chicken soup and I kept that down, so that's good. I'll try a little more tomorrow. Think I'll call my GI about a referral to a nutritionist who can help me sort out something for the Gastroparesis diet with the conflicting Pancreatitis diet.Took a 4-hr. nap today. Guess my body is trying to continue to heal itself. Most of the time I stay pretty busy, so that's not a problem. Thanks for all your encouragement.
jonmg87 Lindy1234
Posted
GL with your MRI tests, and keep us posted. I'm in the same boat you are, except my GI doctor stopped referring me for exams even though my pain has continued non-stop since last year.
Lindy1234 jonmg87
Posted
These Drs. are something else aren't they! I'm waiting for the results mainly for the blood test. People tell me to keep trying to get answers, so I encourage you to do the same. Sounds like you need to change Drs. I live in Houston, so I have the Elkins Pancreatic Center near me. A Dr. from one of the other forums has said to find a pancreas specialist and not mess with the others. I'm beginning to think she's right. Keep me posted as to what you decide to do. They say don't give up, so hang in there!
jonmg87 Lindy1234
Posted
For sure Lindy. Unfortunately here in Canada to see a pancreatic specialist you first need to get through a GI specialist, and seeing as how my GI doctor doesn't think I have pancreatitis that's a tough sell. Have another appointment with her in a week or so, hopefully I can convince her to look more deeply into my case.
Lindy1234 jonmg87
Posted
Hopefully she'll come to her senses and realize that she can't help you anymore, and that it's time to let you see someone else. I. too, have to get a referral from my GI. I'm not due to follow up with him till Oct. What I do next depends on what the MRI and blood tests tell. I keep reading where it has taken some people years to get the correct diagnosis. We have to just keep at it. What does she think is causing all the pain? Did she at least give you pain medication?
jonmg87 Lindy1234
Posted
Thanks Lindy. My doctors currently think it's functional dyspepsia (so a nerve disorder). Was given gabapentin and antidepressants to try which did not help. Off of all medication now, and am just living with the pain in the meantime.
Lindy1234 jonmg87
Posted