So much confusion, help! CP?
Posted , 14 users are following.
Hello everyone! I'm new to this website and hoping to gain some form of clarity about my situation, you all seem like such resilient and strong people!
For background: I'm a 27 year old caucasian male, I have completely stopped drinking, but even before that id only drink roughly 10 days out of the year. I was a smoker for about 8 years but quit cold turkey.
For roughly the past 5-6 years i have been dealing with this constant 24/7 dull discomfort underneath my right rib cage, radiating to my back between my right shoulder blade and my spine. if i press down on my abdomen there is definite tenderness, only discomfort if not pressed on. The discomfort has never been unbearable unless i go and press on that loation, but i have noticed these bouts where i become completely sensitive to fatty or greasy foods, wherein about 15-20 minutes after eating i develop a nagging pain at about a 3-4/10, i become anxious, i start belching and bloating terribly. The feeling is quite difficult to describe but absolutely makes me want to avoid my next meal. my stools fluctuate between normal and abnormal. In the last week my stools have been pale colored like a clayish beige tone, sometimes float and dont really smell awful per se, but im not sure... it's poop lol! anyway, my appetite is not totally gone but has definitely taken a big hit in the last two weeks, ive lost some weight.
As far as tests go, i did a quick review and found SLIGHTLY elevated lipase and amylase tests (about 20 units over) from 2015 that were not really discussed with me at the time, so i decided to go to the ER 3 days ago given this new bout of yuckiness. I advised the docs of my fear of chronic pancreatitis and they performed an ultrasound and an abdominal CT scan with contrast (i must say my stomach was not empty and i worry about whether they got a clear image). Both tests indicate the pancreas, gall bladder and liver within normal limits.
Everyone, I am at my absolute wit's end with this.. I'm crippled with anxiety over this and would love some thoughts/commentary... anything would help. Thank you all for your time in advance.
0 likes, 23 replies
chelsey72022 matthew43478
Posted
There is something called minimal damage pancreatitis. It means you could have the disease and it is just mild so not visible on scans. It is soo important to follow a diet low in fat that works for you. I would also recommend trying to find a panc specialist in your area they usually have more knowledge
kluesy matthew43478
Edited
you sound like me.... i'm going on over 2 years with the dull pain under right rib after fatty food and pain between right shoulder blade and spine. I used to drink, but not at the levels that cause CP. i am 35 and male.
Since this started in 2016 i have had ultrasound, 2ct scans, scope down the throat and the other end, MRCP, a ton of blood work, and my gallbladder removed a year ago. After all of this no answers and the same pain.
what i have found that helps is low low fat diet, whole grains, fruit and veggie. no caffeine or alcohol. if i stick to this strict diet i pretty much have no pain and discomfort. i also take pancreatic enzymes with every meal.
all of this my doc and i think i may have a mild/early version of CP. CP can take up to 5 years to show up on scans like CT, MRCP is better at catching early. the best is EUS.
i suggest trying to get a MRCP or EUS. if those are clear you may look at the gallbladder, as they thought that was what was wrong with me (mistake). another thing to consider is sphincter of oddi dysfunction.
matthew43478 kluesy
Posted
thank you for your reply!! The weird thing is, dont people typically present with at least 1 or 2 acute episodes prior to a CP diagnosis? I just dont understand how this could be.. do you know what this means as far as a prognosis goes? im competely freaked out at the moment!
matthew43478 kluesy
Posted
i also forgot to ask about your lipase/amylase levels!!
matthew43478 kluesy
Posted
oh sorry one more question haha! Did your EUS or MRCP detect anything? let me knw if you can 😃! thanks again!
kluesy matthew43478
Posted
my lipase/amylase levels have always been normal, as has my liver enzymes and bilirubin. my pain never got above a 5-6 out of 10, and the last time i was in really bad pain was when i ate mac and cheese and drank 2 beers (this was before i started figuring out my triggers).
i had an MRCP about 9 months ago and it was clear. this was about 18 months after it had started. i though about pushing for an EUS, bet even if i found out it was early/minimal change CP it wouldn't change my diet and how i am treating it.
there are some really negative statistics on CP in the medical journals (im a PhD and have access to them), however most of them are based on patients with severe or later stage CP, when it is detectable by CT scans (calcification) or endocrine/exocrine issues. i have read about there being a fairly wide range of CP, with some cases having a less drastic course.
the way i see it is if i watch my diet i don't feel pain or discomfort-- this likely means im keeping inflammation down. this is keep with CP, as its the chronic inflammation that leads to fibrosis and ultimately endocrine/exocrine issues. although i still have this disease/issue i currently feel the best i have since it all started.
be proactive, watch your diet like a hawk and don't dwell and over-stress. i notice stress usually helps cause my symptoms to flare up.
one last thought- as this happens ~15 minutes after eating you may want to look into getting a HIDA test done as well. this can tell you how well your gallbladder is working. if its leas than 30% they may consider removing it. mine was 96% and it was the highest they have seen (suppose to go up to 70% or so). they said hyperactive and remove it- just made it worse as i now have issue with bile production and large meals 😕
kluesy
Posted
sorry about typos im on my phone
matthew43478 kluesy
Posted
Hey again!
Your replies have been interesting to read to say the least, I'm going to be honest this is making me more concerned than anything hahaha sigh.
It's just so confusing to have gone through all of this and told that I don't have any form of pancreatitis, yet still have a shadow of doubt about it, when i saw a GI a while back they made me do a barium swallow and CT scan and again they said it must be something minor, no chance of pancreatitis! I may just be a really anxious person, but my god the worrying is absolutely killing my quality of life.
What is your pain like, exactlty? For me it seems at times like it is very pointedly coming from exactly where the gallbladder is located, often i dont have any pain but simply feel discomfort, and if i expand my stomach outward i feel the pain clearly in my gut on the right side. I'd describe it as a gnawing pain. Last night i was lying on my stomach and whenever id inhale id feel it again seemingly exactly where the gallbladder is located.
kluesy matthew43478
Posted
Your pain sounds just like mine-- it always felt like a dull ache or that something was swollen under my right rib. Never a stabbing pain and right where my gallbladder was. When it got worse I would feel it in my upper right back-- not a muscle pain but a deep sort of ache I couldn't pin-point. This is one reason Drs thought it was my gallbladder, as that can cause upper right back pain as it aggravates the diaphragm and the phrenic nerve. look up the phrenic nerve path and it passes right between the spine and the right shoulder blade. My Dr. explained that because your body is not use to feeling pain from the diaphragm is perceives this as pain from the back, this is called referred pain.
It could very well be that your gallbladder is chronically inflamed even though you don't show any stones. This can happen, and usually a HIDA scan can reveal if it's functioning poorly. If this is the case then simply removing it may solve your issues.
If it is mild CP, then I wouldn't freak out with anxiety-- I know I have been there and needed to seek some help. You have had this for 5-6 years and still nothing shows on scans and you are not diabetic. Pale stools could mean you are not putting out enough pancreatic enzymes, however it can also be due to a sluggish gallbladder. Lack of bile and enzymes can both cause pale stools, as well as fast transit due to high stress (lack of digestion and doesn't give bile enough time to turn to dark brown color). Once I started taking pancreatic enzymes my stools leveled out a bit, and mine aren't that dark anymore I think due to the fact I lack a gallbladder and just drip bile now 😃
Even if you have CP (which you don't even know if it is this) it's not a death sentence, however you would need to adjust your lifestyle. Once I accepted this and stopped worrying (I was thinking pancreatic cancer), my stress went down and so did my symptoms (while on my diet). There have been some studies the past few years that show that pancreatic enzymes combined with a ton of antioxidants can help people with mild CP achieve a pain-free lifestyle (following a low-fat diet). Stop the pain, stop the inflammation, stop the progression-- that's the way I look at it.
Sphincter of oddi dysfuction is a whole other can of worms, however if your pain is so mild I doubt you have this. This can cause some pretty crazy pain in people as it's when you sphincter that controls the release of bile and pancreatic enzymes spasms shut, building up pressure in the bile ducts and the pancreas. This is more common in women and folks who have had their gallbladders removed.
ugo16585 matthew43478
Posted
Hi Matthew
I spent one year panicking I had something in my pancreas.
I had similar (and additional) symptoms and a scan has found little gallstones.
I can't see why as I enjoy a little wine and cheese once in a while, except for that very healty lifestyle being a triathlete and eat wisely.
I started the therapy with ursodesossilic acid pills and after a few weeks symptoms disappeared.
Dreckshage matthew43478
Posted
I feel your pain, literally! I have been battling this since September 2016. One difference is that all my pain is on the left side. At first my issues came and went. As time goes by everything seems to be intensifying. I am so scared and disgusted. At this point the pain under my left rib going around to my left side/waist has gotten much worse, more frequent too! My stools are all over the place but not normal. They fluctuate between yellow, floating and oily to large stool to constipated. I have indigestion, bloating and tons of gas.
Nows heres the thing! since this began I have had Colonoscopy/endoscopy, 2 CT with and without contrast, 2 MRI/MRCP - one as recently as 2 months ago, kidney, head/neck ultrasounds,so much labwork
I couldn't even begin to name them. ALL of this has came back normal. Recently I have had 2 bone scans.
First one showed a hotspot on the 7th rib where some of the pain is. Repeated this 6 months later ans states the hotspot is better! All this, I still have all these symptoms and is getting worse. I am seriously at the end of my rope!
glenn06752 matthew43478
Posted
My daughter went through the same thing you are experiencing. 3 or 4 times to the ER and they found nothing through imaging and other radiology. Finally her 4th or 5th trip, they found her gallbladder loades with stones. Why they didn't find this condition on the preceding visits is unknown. Imagery sometimes can be confusing.
Once her gallbladder was removed, all of her issues went away. The gallbladder certainly can be a precursor to a pancreatitus and elevated lipase and amylase count.
Hopefully you can get to the bottom of this sooner than later.
Sammie1965 matthew43478
Posted
This sounds like me prior to my acute attack, fortunately only had the one attack and I'm managing my diet so u don't have another one. Stopping drinking is good, next thing to try is a low fat diet. The pancreatis doesn't like fat. The hospitals can't do much for you. All they did for me was put me on strong painkillers and nil by mouth for a few days. If you have a proper attack you 'll definitely know about it very debilitating. Good luck
ashtnren matthew43478
Posted
I have had similar issues for the past 2 years. I too had clear CTs, Ultra sounds, and blood work. Like others have said you may want to consider a HIDA scan to look at gallbladder functioning (mine looked good on a CT but is functioning at 32% which is below average but not low enough to do surgery until it gets to 30%).
Another scan you may want to get is an EUS, even though my CT and Ultra sounds showed a completely normal pancreas, the EUS showed minor stranding. The doctors told me this indicates I have more than likely had a minor acute attack at some point, however it is not enough damage to be classified as ,"chronic," as you need more than 2 minor criteria. I was told that if I follow a low fat diet and limit alcohol intake that it should not progress to chronic. I guess I am in limbo, but if I had not had the EUS and kept living life as normal than I would have for sure progressed so its good information to be aware of.
kluesy ashtnren
Posted
Curious, did you have any pain under your right rib or upper right back ashtnren? This sounds like me, except they took out my gallbladder (mistake). Can you control the pain with diet and enzymes?
ashtnren kluesy
Posted
My pain is primarily on my right side. I do not have to take enzymes. I can control the pain mostly by diet. I avoid all fried foods and greasy foods . I use to be an avid beer lover- we would go to breweries every weekend. I still occasionally have a glass of wine here and there (which my doc said would be fine) but stay away from it for the most part.If I do these things I do not have pain. My doctor (who is a Pancreatic Specialist) seemed fairly confident that if I stuck to this recommendation that it shouldn't progress to Chronic. I will continue to do yearly HIDA and EUS scans to monitor it.
kluesy ashtnren
Posted
Yeah, I'm probably in the same position as you. Was an avid craft brew (IPA!) lover and those days are behind me. I could have a couple, but if I keep this up over a few days the pain returns. So, I gave it up and haven't had a beer in over a year now. My biggest trigger is actually caffeine, which is strange. Once cup of coffee will send me into pain.
matthew43478 ashtnren
Posted
Ugh this is so weird! i just has another appointment with my GI and the doc seems to flat out deny anything pancreas related. doctor says that lipase and amylase must be at least about double normal values to determine anything pancreas related, my CT showed no signs of pancreatitis either. He decided to test IG4 values to see about AIP, but he is very doubtful. I tried asking for an EUS and the doc flat out refused.+
ashtnren matthew43478
Posted
I think your enzymes are only elevated during an acute attack (not chronic),but dont despair too much (easier said than done). Ive had an EUS and still dont have a definite answer. The best you can do is alter your diet and see if that helps, low fat no booze. Someone told me dealing with your pancreas is a crash course in patience- which I am beginning to believe is true. If you absolutely cannot wait try going to another doctor. I went to 4 GIs before I found someone to do my EUS.