Could this be chronic pancreatitis?

@ladyaceintx1 thank you for sharing your symptoms and experiences. While I do not get the nausea I do find myself not eating to avoid the pain it is causing which is affecting my weight 🙁 I've been trying to eat smaller meals more often and adopted the pancreatitis diet as well. I am able to tolerate small bits of butter but am cooking with coconut oil most often now. With thirst its not new to me so I haven't noticed an increase, since I've been pre-diabetic for over 16 years I am always thirsty and always visiting the bathroom because of the insane amount of water I drink. I found a pancreatic specialist that studied at mayo and spoke with him a week ago. We did some additional testing to see whether or not I am absorbing vitamins that typically start lacking in cases of pancreatitis. The results will be back sometime later this week. While I have the same pain symptoms there is nothing in imaging to suggest the pancreas is the source of my problems including all of the other testing I've been through. He did confirm that 50% of chronic pancreatitis cases occur without ever having acute pancreatitis and that it's a possibility. He did let me know the iron deposits are there to stay but isn't sure that it's the source of the pain, it's impossible to diagnose without other physical issues appearing in imaging or tests (enlargement, duct dilation, calcification etc). We are in a wait and see status for now. He mentioned continuing low fat low sugar diet and adding antioxidant rich foods which help the pancreas heal. It may have been the infection from earlier this year, again there's no way to tell.... I have been given nortriptyline to help with the nerve pain. It's helping me sleep but I am having a hard time waking up in the morning - pretty much knocks me out for 10 hours every night. Pain has been very mild and minimal these last two weeks, even before starting the drug. The bizarre feeling under my rib as though something is stuck underneath it - I am not really sure anymore I feel like I am just getting used to it at this point. I am missing caffeine as well, is stopped drinking diet soda's and coffee and replaced them with ginger and peppermint teas. I am trying caffeine free diet coke this week to try and bring some normalcy back into my diet and life. Oh I also now have really low blood pressure, again no idea on the cause - maybeee the weight loss. I am clocking in at 90's/60's and get dizzy when I stand after periods of sitting or bending down. Yet another thing we're monitoring. Thank you again for sharing your experiences with me and what you're doing to control symptoms < 3

@missingthebeach
Thank you for your reply and the additional information. I'm interested in hearing about the types of tests that were ordered to determine the Vitamin deficicies? Also, can you share whether the diet coke, caffeine free is worth trying? I'm mainly only drinking water with a little bit of fat free, lactose free milk. I miss being able to drink coffee, have a glass of wine occasionally with dinner and having to watch everyone around me eat and drink whatever they want. But, I remind myself how painful the attack of acute pancreatitis was and I'd do anything to avoid it happening again.
Let me know how you're feeling.

@ladyaceintx1 the blood tests were for vitamins A E and K, I believe those are the first ones to become deficient when there are issues with the pancreas. A came back middle, E was middle low, and K was low. He's asked me to do a multivitamin with K and check back during our next visit in Aug. I found it to be weird that it's low because spinach, kale, brussel sprouts and broccoli are part of my regular diet.

Caffiene free diet coke is okay, it's the same as diet coke really. When I last spoke with my doctor he recommended antioxidant rich foods to help the pancreas heal. Besides diet and antioxidants there doesn't seem to be very much else that can be done.

My diet lately consists of post shredded wheat cereal with fairlife 0 percent fat lactose free milk (good source of protein half the sugar than regular milk) there's also a premier protein cereal I sprinkle in sometimes.

I am also really enjoying making smoothies with the fairlife milk banana and other berries with some oatmeal.

I switched to whole grain everything to slow digestion down and help regulate blood sugar.

2% fat fage yogurt with various fruits like blueberries raspberries strawberries black berries mango, I also add walnuts or almonds every now and then for healthy fats.

I also started buying a sprouted bread and eat that with any type of fat like sugar free peanut butter, and egg mixed with egg whites.

I am finding that butter bothers me the most so I am cooking with coconut oil most of the time and olive oil.

I found that drinking caffeine free tea is also helping a lot. In the morning I have a cup of ginger tea and got some tumeric powder I throw into it (helps with inflammation) and just started a cocao powder mixed in with a peppermint tea (pretty tasty) flavored soda waters are my go to for something that isn't tea.

I am using an app to track my sugar and fat intake (as well as vitamins) and average about 35-50 grams of fat a day without any major flare ups or symptoms so far.

The last several weeks my symptoms are the most mild they've been all year, there is a tearing sensation in my side and back rib maybe 3-5 times a day for several moments then goes away. Still itchy as well just not nearly as often.

I have never had an acute attack - If my symptoms are just the beginning of chronic pancreatitis I can't even imagine how you're feeling! That throbbing shooting and pounding sensation was AWFUL I don't ever want to experience it again :'(

I am getting my A1C checked in a few weeks, I am expecting it to be better considering the tremendous weight loss and extreme change in diet. If it's worse I'll be following up with my GI.

Oh I am also on two probiotics, 2x culterelle daily and 1 florastor (since April). Stool color has fully returned the last couple of weeks.

@ladyaceintx1 I saw this posted on another forum the person said he had been diagnosed with mild chronic pancreatitis tried olive leaf extract and has had little to no symptoms since- I think he said 6 years. Anyway, I started taking a pill form of olive leaf extract last Monday and within two days my symptoms dang near disappeared. I bought a few other herbs listed in the site below as well but so far so good. Not sure if its a placebo effect or just having a quiet week but I wanted to share anyway as there have been studies done as well heres the links:

Olive leaf extract

@missingthebeach
Thank you so much for this information. I will check into it and I'm glad that it's gotten good reports and feedback so far. I finally heard back from the Pancreatic Specialist and he thinks there was a "sampling error" of my first Pancreatic biopsy which he says happens often. Since my GI can't seem to determine why my pancreas is inflammed and has ruled out: autoimmune, cancer, diabetes, smoking and obesity as possible causes, the Specialist thinks not enough tissue was collected or they didn't biopsy the right area. Because the biopsy caused an episode of Acute pancreatitis that put me in the hospital for 3 days and caused severe pain, I'm reluctant to jump into another biopsy although the Specialist said what happened to me was rare. On one hand, I'm curious to know if a second biopsy could really discover the reason for the inflammation/
cause of the pancreatitis but I'm worried that they won't find anything and then I'm back where I started and with another very expensive procedure to pay for. If I don't have the biopsy...and develop cancer on down the line, will I regret not having it done. I'm spending spare moments pondering on this and have not arrived at a conclusion. What are your thoughts and how have you been feeling lately?

Hey!

Heres the supplement I got:
https://www.amazon.com/gp/aw/d/B01KVADU1O?psc=1&ref=ppx_pop_mob_b_asin_title

I was good/not so good for most of June kind of back and forth so I moved up my appointment with my pancreatic specialist for Aug.

In the mean time I had another appt with a separate specialist that I had scheduled three months back and met with him yesterday. Unfortunately I didnt learn too much more. We discussed my infection and it possibly being SIBO. He said bad cases of SIBO can really mess with the digestive muscles and nerves in that area and my body could still be healing from that. He didnt rule out pancreas issues either because I am reacting to fatty foods. He did not recommend any additional imaging or testing because the next option would be the ultrasound endoscopy which he said was very similar to the MRCP I had and that test is very sensitive and even “overly sensitive” were his exact words. He said alcohol use can cause iron deposits but only in severe alcohol misuse which isnt me. We talked about how some people can drink/smoke all their lives with no issues and others that dont smoke or drink end up with cancer… it makes no sense! He told me to keep with my diet and stop taking the nortriptyline when I am ready. He mentioned supplements as well and alternative pain management like acupuncture. That was pretty much it!

The olive leaf extract is really helping, I am not feeling the weirdness under my rib at all this week. The tearing/shooting sensations are nearly gone, I felt a little tearing earlier this morning and its been a really good day.

I am still keeping with my diet, no alcohol no caffeine low fat, making sure I get my fiber in and watch my sugar.

I had my A1C checkin and it had not changed - which is good but also I thought it would get better honestly with my diet change. I will take it though!

I am really sorry to hear that your checkin didnt go well 🙁 Hearing that they didnt get enough of a sample and needed to go back in again would make me so angry. That procedure is so invasive!

I am not really familiar with what the biopsy is for besides cancer? Do they check the cells for autoimmune diseases or hereditary diseases?

If they determine its autoimmune what exactly do they do then to help?

I would be concerned about the cancer aspect of it, thats the biggest thing I was happy to rule out with the MRCP.

I really dont know if I can offer up advice, I dont feel like I can put myself in your shoes. You have such a unique and scary situation that I think only you can decide whats best. The only thing I may suggest is talk to other specialists. It seems like the more doctors I speak to the more I learn about the huge gap in knowledge and experience. Have you been seen by Mayo? If my symptoms persist or get worse I will be pushing for a visit there, I have tried but keep getting shut down as they have no appointments and since my doctors wont refer me its even harder.

@ladyaceintx1 how have you been doing?

@missingthebeach
Hello!
Nice to hear from you. As you may remember, I had been putting off the second recommended pancreatic biopsy for several reasons, but recently went ahead and scheduled it on 9/1. I've only had a couple of pancreatic pains this year that have sent me to the ER. Controlling my diet keeps it in check I think. The surgeon is aware that he is supposed to collect more tissue this time around and I'm hoping not only for an actual diagnosis of the Chronic Pancreatitis, but that it doesn't set off another episode of acute pancreatitis like it did last November.
Meanwhile, I think I tore my left arm rotator cuff in July, playing tug of war with my 90 pound dog and have an MRI scheduled this week on Tuesday. The pain has been excruciating. Other than this, I'm OK and just trying to get thru every day. How are you? Any updates and have you had any acute episodes?
Let me know how you are. BTW, I was thinking about the beach this morning and then got your message.

@missingthebeach
Happy National Beach Day!
Hope you are feeling OK?
Have there been any changes or updates?
Hang in there!