Losing My Mind
Posted , 5 users are following.
Hi everyone,
I have posted a somewhat similar question on here so please be patient with me....... For those that dont know, for the past 18 months I have had mild achy pain under my right rib. I initally thought it was something with my galbladder but this summer the pain started occuring under my left rib. I will say its never gotten too painful (maybe a 3-4 on a scale of 10). Most of the time I forget its there unless I touch it (its ALWAYS tender). More recently I have also began experiencing pain that alternates between left and right shoulder blades(this is not every day). My bowel movements are inconsistant. One week diarrhea (sometimes floats), another week fine, and then the next week Ill be constipated. This week my stool has been yellow which is freaking me out. I have seen three different gastroenterologist and all just tell me its IBS. I have had so many blood test I have lost count (all come back normal), I have had at least 3 ultrasounds (all normal). Last year I had a CT which also came back normal. About two weeks ago I meet with a new gastroenterologist who suggeseted a more up to date CT scan..........of course this also came back 100% normal as well. I have read in several places that early Chronic Pancreatitis is difficult to diagnose by CT. I still cannot let go of the feeling that that is what is going on with me. Everyone in my family thinks I am crazy and they are all pretty sick of my complaining about this. They think its all in my head. I feel like the doctors are beginning to think im crazy as well. I guess my question is how do I advocate for myself when I cannot get any Doctor to listen to me?I would like to see someone who specializes in the pancreas but I have to have a referral from a gastro to do that and they wont write me one becuase all of my labs show I am fine? I would also like to push for an EUS but they also wont do that because I have had two clean CT scans. I would like to have another baby soon but def dont want to until this is all cleared up. Im pretty much at a loss here. I just find it hard to belive that IBS would cause abdominal tendernesss for 1 1/2 years. Am I wrong?!?!
0 likes, 11 replies
steven_86915 ashtnren
Posted
HI I got diagnosed 4 years ago with Crohnic pancreatitis by ct-scan . The doctors done endoscopes first but seen nothing But reading your story i would say you maybe have acute pancreatitis where your getting flare ups now and again . most people with CP are on morphine or other strong pain relief im on morphine liqiud and Pills Theres a great group called Crohnic pancreatitis UK on facebook on there are people with plenty of experience of Pancreas problems and tell you who the best Pancreas doctors to see in your area
ashtnren steven_86915
Posted
Thanks for your reply! Im located in the US, do you think that group would still have knowledge about doctors in my area?
steven_86915 ashtnren
Posted
Sorry i thought u where in UK The AMERICAN one is Acute& Chronic Pancreatitis Support
kay82451 ashtnren
Posted
Where in the US are you located?
ashtnren kay82451
Posted
DALLAS
Shortie79 ashtnren
Posted
Have you been tested for celiac? CP is really debilitating and your pain scale doesn't reflect the pain of CP. It took the doctors over a year to diagnose me and even my GI thought my symptoms were IBS related. Turns out I was born with Pancreas Divisum (rare condition where you're born with two ducts) and it caused CP. Another factor is your age, family history, cystic fibrosis. Unless you have a family history, cystic fibrosis, Pancreas Divisum or are elderly it's not common for someone young to get CP. You also don't want an EUS as it can cause an attack, the best noninvasive test to look at the pancreas is a MRCP. I had blood work, ultrasound and regular endoscopy all come back normal but lucky for me, the CT Enterography showed atrophy of my pancreas and that's when the MRCP was ordered. The CT didn't catch my two ducts. I would also journal your symptoms, weight loss, acid reflux … what other symptoms are you having, because what you're describing doesn't sound like CP. I was already on pain meds for a different medical condition while getting an attack at home and it didn't touch the pancreas pain. You also have to be on a low fat/sugar lifestyle and figure out what foods your body can handle, everyone is different with CP. However, if you think it's your pancreas hurting you, then rest it. You do this by not eating solid foods for a couple days. Drink broth or Ensure and work your way to bland foods. If that doesn't make a difference then it's probably not your pancreas. I'm only 38 and too young for CP but due to my condition I have it.
ashtnren Shortie79
Posted
Thanks for your reply. YES- ive been teated for Celiac. I have also had a colonoscopy to check for Chrons (which runs in my family) and Diverticulitis..... all came back Negative. All of these issues started after I gave birth to my son. Im wondering if its possible to damage the pancreas during pregnancy? I do drink socially on the weekends but not that much anymore since I now have a toddler to chase around. I am only 31 and have no history of CP in my family and do not have Cystic Fibrosis (was tested for that during pregnancy).
kris11713 ashtnren
Posted
How is your energy? How do you feel after eating?
ashtnren kris11713
Posted
My energy is about the same as its always been..... I mostly feel ok after eating unless its something super greasy or fried. I have decided to stay away from those types of foods. I have an appointment with a pancreatic/liver specialist next week who has agreed to look over my CT scan and verify if he agrees/doesnt agree with the radiologist who said gallbladder and pancreas look fine. The scan was done with and without contrast. He said if it was a good clear image than that should be adequate. If not I may have to undergo a MRCP which I am totally fine with.
kris11713 ashtnren
Posted
I don't trust the IBS idea either; sounds like a description, not a cause of symptoms, doesn't it?
I've also had doctors that don't listen or just assume I'm nuts. Sometimes you just have to change doctors. Tell me more symptoms. Good luck to you Ashntren with pancreatic/liver specialist. Keep in touch. Kris
Shortie79 ashtnren
Posted
I would request the MRCP, it's the only noninvasive test, that really looks at the pancreas. Not even the CT Enterography (CT where you drink barium) caught the Pancreas Divisum (born with two ducts) for me, however, it did find the atrophy of the pancreas. The MRCP shows the pancreas while it's working, and it'll show if there's any obstruction in a duct, etc.