Does AP always precede a CP diagnosis?
Posted , 5 users are following.
How is one diagnosed with CP? Is it necessary for there to be an acute attack of pancreatitis first before the disease eventually develops into chronic pancreatitis? Does chronic pancreatitis spontaneously develop without there being any intitial attack? I'm just trying to understand how you can get a CP diagnosis in the absence of an initual or acute attack?? How does it end up becoming chronic if you can't identify where it started, not including all the vague digestive symtoms. Does my question make sense...??
0 likes, 12 replies
melocotones jkristine
Posted
I'm trying not to stress as I know it could be two unrelated issues but it's definitly hard when your symptoms seem to line up. What I'm doing and what I'd suggest you do if you're in the same boat as me is push for testing (CT scan with contrast is a good first step, an EUS being the most accurate diagnostic tool which I am currently pushing my gastro Dr. for) and eat a low fat diet / refrain from alcohol and cigarette smoke / try to exercise daily. If you truly have early stage CP these are things you would want to do regardless that will slow down or halt to progression of the disease (and are good for you in the long run anyway).
jkristine melocotones
Posted
So, from the sound of it you never had an acute attack either per say...I hope you can get some answers. The info I've read says if you do change your diet and take enezymes, it can help, so it's good you are doing that. Are you taking any meds or supplements? I've read that turmeric capsules can help with inflammation. Do you have any pain in your abdomen?
My symptoms are a burning and squeezing pain from my belly button to my breast bone. It hurts all the time, regardless of what I eat. I have drastically changed my diet over the past month. No red meat, nothing spicy or fatty...nothing to acidic...no caffeine or alcohol...and I'm still sick! My poop is green during flare-ups and it burns...it is solid too...I have nausea but no vomitting...gas and belching...
Have you had any blood work done? If so what were your results?
I had a slightly elevated lipase level which has been dropping closer to normal over this past month...hence the CP diagnosis.
Normal abdominal ultrasound, normal endoscopy and hidascan (gallbladder normal.)
I will ask for those tests you suggested and I scheduled an appt. with a GI specialist next month.
When do you go to the doctor? Hope you get some answers soon...
melocotones jkristine
Posted
Over the course of this I've had bloodwork multiple times (always normal for pancreas and liver function), X-Ray, ultrasound, CT with contrast (all normal). I've been taking tumeric as well as grape seed extract as I heard they are both beneficial for CP (and your health in general). My pain is a bit abnormal for pancreatitis and I was hoping it was muscular but nothing seems to improve it. I'm still planning to push for an EUS because I've been told that's the gold standard for picking up CP early - however I had a gallbladder (HIDA) scan today and the results are that my gallbladder is only functioning at 5% (35% is normal) so that gives me hope that that is the cause of my digestive issues.
My only advice is keep pushing for tests and don't freak yourself out on the internet! Stress won't help in any way! I pray we both get a negative diagnosis for CP - keep me updated if you do continue to get tested and I'll do the same.
jkristine
Posted
I think I've read all the same horror stories as you! I feel so scared about CP...I know what you mean....but my personality is such that I will go to the worst case scenrio first and then back track and deduce....
I've blamed myself too and have questioned my habits and lifestyle, for different reasons though thinking I must have done something in order to get this but I'm not a drinker really...I eat well, exercise...I'm in good shape so I am so confused and baffled with a diagnosis of CP...not only confused but terrified...I'm trying to tell myself that I was diagnosed by a general doctor based on blood tests and not a specialist...I have to console myself somehow...
Do you think the tumeric and grapeseed are helping?
At least with the HIDA scan results, you have some sort of explanation to your sytmptoms...knowing goes a long way....
Let me know if you get the EUS test done and what the results are...and hang in there! Ill keep you posted too!
manda1030 jkristine
Posted
yes it does make sence. CP most of the time comes from alcohol. It can also be caused by blocked ducts, heredity, auto imune disorders and some times the cause is unknown.... In short most cases are usually yes started by AP. I do not know if science has actually come to the true conclussion of why we get CP. But I sure hope they find a cure soon!! Hope I at least kind of answered your questions.
jkristine manda1030
Posted
I agree...so much of CP is a mystery to the medical world...they don't have a lot of answers let alone treatment options and that can make someone who is suffering feel so alone and hopeless at times...it does seem like there usually is an initial AP attack for most people so it's confusing to understand how CP is diagnosed in the absence of AP...!
Thanks for replying and helping me understand...I hope you're having a good day!!!
manda1030 jkristine
Posted
Hi , yep if you got it with out an initial attack maybe hereditary or auto immune disorder could be to blame. They really need more research for us CP suffers. I also hope you are having a wonderful day! Wishing you all the best!! ☺
x Manda
jkristine manda1030
Posted
How were you diagnosed? What are your symptoms? How long have you had CP?
I'm almost 40 years old...I noticed horrible bouts of heartburn in August after eating Mexican food or sweets...I was able to manage it but then the heart burn kept getting worse and then my stomach started to burn, like an ulcer pain. Went to the doctor and I thought for sure I had gastritis or an ulcer as it was this intense burning right below my breast bone...he ran blood work and my lipase levels were elevated normal is 60 and mine were 101....as of last week, they are 69 and I'm not feeling much better...I had a period of 3 weeks with hardly any trouble and Ive stayed on my strict diet and still things are flaring up again...horrible heartburn, burning/squeezing abdominal pain and green formed poop! I don't know if this is a pancreas attack or what...I go in for a EUS next month. Have you had that done? I just don't know what mild pancreatitis is supposed to feel like...
Endoscopy clear and abdominal US clear, HIDA scan normal.
I have 3 kids and the despair I've been in thinking about my future has been heart wrenching...on my good days, I'm full of hope and positivity but on my bad days, like today, I am scared. Can CP vary from day to day?
Sorry for all the questions...😔 it's no fun worrying...is it?!?!
manda1030 jkristine
Posted
My heart goes out to you!! I am also a mom. they diagnosed me after 6 years of constant testing. yes I vary from day to day month to month. I was at the ER for the who knows how many times when a DR did an MRI... They found I had sever scare damage and stone calcification. I have had it 15 years and I turned 40 in August.... My pain in a burning sensation clear to what I am going through now throwing up extreme pain in my middle stomach, left side clear into my back feels like I am been run through with a hot poker. That being said everyone is diffrent. Yes I hve had many tests done. the EUS should be able to diagnose you. it is however hard to diagnose many times. That is why it took so long with me. all I can say as a mom myself is just do the best you can. Kids are amazingly understanding. I feel for you and I totoally sympathize. Any questions you have I will be glad to answer.
Hugs and smiles sent your way!
Manda
PS, My hir is naturally light blonde so red takes really easy. TY! I think you look great! you could pass for 25 no joke!!
jkristine manda1030
Posted
So you get burning pain too? Do you think it's from the pancreas or do you think another condition causes it? It's hard to tell which organ is causing problems when it comes to your digestive system, isn't it?!?!
I'm scheduled for an EUS on Friday...I'm nervous but I'd like an answer too...lets see how things go...
How have you been feeling lately?
pkj1122 jkristine
Posted
jkristine pkj1122
Posted
As far as I know and have heard if any test is going to see pancreatitis it's the EUS...I haven't had one done just yet...mine is on Friday...I have bad heartburn too and have you tried gaviscon advance...it's only available from the UK...I order mine from amazon and it has helped a lot! I take it after every meal and before bedtime...I'm meeting with a pancreas specialist doctor as we speak...ill let you know his suggestions for further testing...