Diagnosing CP with visual tests - question

In addition, the average time from symptoms to diagnosis is 60-80 months, so it can take a while for the damage to be apparent. I think this number goes down if EUS is used, vs CT or MRI. 

so basically, you can only notice if someone has CP through damage to the organ? Nothing else? I have pains since last Decemeber (2017) and CT,MRI, MRCP and 2x EUS show no signs of any problems with the Pancreas.

Normally either a CT, MRCP or EUS will show damage or inflammation to the pancreas. If it doesn’t show that then it would show stones or dilation to the ducts. Regardless one of those tests would reveal something if the pancreas is having problems. Depending on how old you are, it’s not likely for someone to get pancreatitis unless you have a family history, cystic fibrosis or Pancreas Divisum (unless you are over 50 or a hard core and I mean hard core alcoholic). Furthermore, in most cases, the person is diagnosed with acute pancreatitis before they become chronic. Each person will experience different symptoms but you may want to ask for an EPI test (fecal test). That specific test will look to see how much fat/nutrients you can digest/absorb. Sometimes all you need is digestive enzymes because your pancreas isn’t producing enough. 

The only other ways of telling are from a fat stool test and/or a endoscopic secretin stimulation test. The former usually only shows up after the pancreas has been damaged over a long period of time (years to tens of years). The secretin test is suppose to be pretty accurate, and I have read it can show earlier/milder cases when EUS can't. Although, you typically read about 90% + accuracy for EUS, so it is considered a great test. I think MRCP is around the mid 80s for accuracy. CT is lower, although good for seeing stones in advanced cases. 

I have been in pain (like you) since December 2016, and my MRCP in April was clean. This was 17 months into symptoms. I had my gallbladder removed as well, but that wasn't the cause and made things worse. 

Does your pain get worse after eating fatty foods? That is a good sign it has something to due with the pancreas or bile system/gallbladder/liver. I live on around 20 grams of fat a day, as this keeps me out of pain for the most part. I also take pancreatic enzymes and bile acid (no gallbladder) and my stools went back to normal. 

Hey shortie-- have they tried doing a resection of the pancreatic head or discussed doing some sort of whipple? I don't remember if you are diabetic yet or have stones, but a lot of journal papers described pretty decent pain relief with resection, while maintaining some sort of exocrine and endocrine function. 

I’m not certain exactly what the plan is. I will find out in November. I have already been through everything possible other than removing my pancreas. The problem is I have two pancreatic ducts which makes it worse. My ducts get clogged and back up the bile which then causes an attack. I’ve tried stents, had six ERCPs, the celiac plexus nerve block but it doesn’t help my symptoms because of my narrow ducts. My specialist did tell me about one surgery and he mentioned the liver acting like the pancreas but that was a year ago. This is a last resort due to my age. I’m really young to even have CP but due to the divisum it caused the pancreatitis. I had never been diagnosed with acute which made it harder for me to get my initial diagnosis. He wanted me to have the nerve block performed first, which I did, and it didn’t help and now I’ll find out the exact surgery in November. He did tell me, I’ll be dependent upon digestive enzymes and insulin.  I’m pretty used to my symptoms but there’s some I cannot tolerate every single day. I live in pain everyday, so it’s my normal but the vomiting needs to stop LOL.

Wow, you have been through hell it seems... I am 35, so I feel you about being young (this started when I was 31-32). If you are not diabetic yet then I would advocate for the tp/ait procedure. This is what your Doc was referring to regarding making the liver act as the pancreas. They remove the islet cells from the removed pancreas and stick them into the liver, where they function and produce insulin. I have read about folks in your condition where it gave them their life back, only to be mildly diabetic or not need insulin at all. If they are going to take the pancreas out, it seems worth giving this a try, rather than becoming a brittle diabetic. 

If you go tp/ait there are a few places in the US that specialize in this. Folks in Minnesota sort of pioneered this work I believe and they have some of the best outcomes. I have some journal article I can send you if you PM me.  

Marcus-- sorry about hijacking the thread. Did you end up getting a scan done? 

I’m 38 so you’re not far from mein age. Mine started back in 2014 but I didn’t know it was my pancreas giving me grief. I had exploratory surgery and they found my intestines adhered together. After that surgery I got worse and worse but just pain not all the pancreas symptoms. It wasn’t until 2017 I received my PD diagnosis and have been doing treatment ever since. I travel to my specialist because there’s no doctor in my area who can treat me and there’s no equipment in the hospitals near me to treat pancreas issues. I go to UCSF and they do, do that particular procedure you’re referring too, I just couldn’t think of the name. There’s another hospital a little further that also does it but I have a problem with traveling long distance due to other medical conditions I have. I think my other conditions contributed to the lack of my initial diagnosis because almost everything gets blamed on it. I don’t have a gallbladder, appendix, uterus, ovaries therefore there wasn’t much to rule out LOL. However I did get kidney stones due to malabsorption and wowzers those hurt! I never had kidney issues before. I’m not currently diabetic but I do think I might be prediabetic. I get super dizzy and go potty quite a bit without drinking too much and I know those are potential symptoms. However I also have really low blood pressure until I’m in debilitating pain. I do everything my doctor recommends … resting my pancreas when I feel pain, sticking to low fat/sugar lifestyle, drink Ensure everyday, use heat packs, take Tylenol on top of my pain medication, eat six small meals rather than three big ones, eat frozen veggies instead of raw, apple sauce instead of apples. I also eat oranges because they help with inflammation but I cannot drink the juice. I don’t drink but I do drink coffee and I need to switch to decaf (I don’t drink a ton of coffee just two pods a day). It’s just the narrow ducts that cause me grief but I have overcome so much so far, that I know I’ll overcome whatever is next. I also know someone who’s already had the procedure and is okay. It’s the same one you described but he had it done at the further hospital than I travel to. I try and keep a positive attitude with everything that I deal with and I try to distract me mind with things I’m able to do. It really helps me to let go of the things I cannot control. Life is a roller coaster, what goes up goes down but what goes down also goes back up. Thank you for the information, I will read up on it. 

Hi kluesy, 

I had already the EUS twice, and each time there was nothing wrong with the Pancreas, no sign of Chronic Pancreatitis. So I have no idea what's happening. I am getting so tired of this. Every day I have this s**t feeling.

What type of symptoms are you having? There’s other conditions that can mimic pancreatitis. Are you vomiting undigested food? If so … I would look at gastroparesis. I don’t know what your blood work is like but if your liver enzymes are elevated then I would look into hemochromatosis. 

Something else to consider is sphincter of oddi dysfunction. This is something that can lead to symptoms that mimic pancreatitis. It can also cause it, by the sphincter not opening to let out pancreatic enzymes, leading to auto digestion and inflammation. It is relatively common in people without a gallbladder-- do you still have your gallbladder? This pain typically manifests bellow the right rib and mid/upper right back. Triggers are usually fatty foods, alcohol, spicy foods, etc. 

2 clear EUS is a pretty good indication that the pancreas is good. Have you also had a MRCP? As shortie mentioned, are there any indications of increased liver enzymes (ALT/AST)? 

The biggest symptoms:

- soft stools,

- abdomen discomfort/light pain

- one of my ribs hurts, right behind my stomach

had all bloods, ct, mri, eus and mrcp done ;/

- tested postivie for lactose intolerance ( didnt believe it tho because lactose products didnt cause me problems. After not eating any for a couple of days nothing changed

 

at the start of your problems, was your pain easier to bare? did it gradually increase? how long did it take?

I had an MRCP and tests show nothing. Except raised Bilirubin

If you tested positive for lactose intolerance, did they test you for celiac disease? When you’re lactose intolerant you’re not able to properly digest the lactose enzymes produced which can cause abdominal pain, bloating, diarrhea, etc. however, it’s not a quick fix. Sometimes people who are lactose intolerant also may have celiac disease or have IBS as well. Celiac can be screened by a blood test (unless you have another autoimmune disease then you might have a false positive since celiac is also autoimmune). Celiac can cause horrible pain dependent upon the sensitivity to gluten. 

At the start of my pancreas problems, I was already on pain medication for another medical condition I have and I was in debilitating pain. There was pain after eating, vomiting, horrible weight loss (I am only 5 feet tall and lost nearly 50 pounds in a matter of months) acid reflux, pain that radiated to my back (left side only) hair loss, itching, migraines and more symptoms. I didn’t have diarrhea but I was super constipated (probably why the GI thought IBS related). I was really fatigued and weak. I gradually got worse and worse over a year and developed kidney stones due to malabsorption. Once I was under the care of my pancreas specialist and followed his advice, I started to feel better. Unfortunately my symptoms don’t get better because I have two ducts so I live in pain every day. 

Hi, thanks for your answer. I am going Lactose-free for now. Let's see what changes. Celiac I believe I was tested through a sample for intestine during an EUS.

Yea, I still don't know what's wrong with me. I just always have this discomfort rather than pain, feels like the pancreas. Just this bloated, swollen feeling inside of me. Do you have any advice which was a game changer? ( coming from you or your specialist)

Whenever I feel more pain then normal I have to rest my pancreas. Resting the pancreas means, you cannot eat solid foods for several days. You can drink chicken broth then work your way to Ensure (those are lactose free) and then gradually work your way to solid bland foods (probably the third day). I get full very quickly and bloated all the time but I also have gastroparesis (slow digestion) so I eat very slowly to prevent vomiting (even on anti-nausea medication). It’s a battle trying to figure out what foods your body can handle and what foods it cannot. It’s better to eat six small meals rather than three big ones because it’s easier on the stomach to digest. I have to supplement my fruits/veggies. Instead of raw veggies I have to eat frozen and instead of apples I have to eat applesauce. I also eat one orange a day because oranges are anti-inflammatories but I cannot drink orange juice (too much sugar and makes me sick). People who have CP have to stick to a low fat/sugar lifestyle. I’m not diabetic yet but I get very dizzy and I can tell when I need to up my sugar/carb intake. I also try and stick to gluten free products as well, processed foods seem to really do a number to my body. I don’t have a gallbladder or appendix, therefore I don’t have those filters. I can tell when my pancreas is acting up, it’s not just the pain but the color of my stool. Since the bile backs up, my stool goes from normal brown to a clay/pale color. That’s also an indicator for me to rest my pancreas. Everything regarding eating, I have been told by my specialist. I also use heat packs on my abdominal area and back (I get them from amazon and you can put them in the microwave, they really help). I’ve been in the hospital so much I decided to purchase them because they give them at the hospital when you have an attack. I was also advised I can take Tylenol for the inflammation but not Motrin/Aspirin because those damage your stomach lining. I’m so used to the pain it’s part of my everyday life. Feel free to ask questions, etc. I tend to forget what I deal with until I’m asked something specific. 

Hmm. Raised bilirubin could be telling you something there. Some people have a non-threatening condition called Gilbert's syndrome, but if you never had raised levels in the past this may indicate that you are not delivering bile enough to the small intestines. This can cause bilirubin to back up into your liver and blood stream. 

Have you had your gallbladder function checked (HIDA scan)? MRCP would show stones, but it doesn't indicate how well the gallbladder is working. Also, were your ALT and AST levels normal? If those are high it can indicate a fatty or inflamed liver.