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Could this be chronic pancreatitis?
Digestive Health | Last Active: Dec 17, 2023 | Replies (26)Comment receiving replies
@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?
Replies to "@missingthebeach Thank you so much for this information. I will check into it and I'm glad..."
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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.