What are my chances?

[Jackie1947]

I've got significant Pancreatitis diagnosed a few months ago which came as a big shock. Still is. I will be seeing a gastroenterologist for the first time next month. This was diagnosed by a CT scan. I'm scared it will develop into cancer down the line particularly losing two people I knew. What are my chances and will I be monitored?

[Readingagatha]

I am so sorry, I remember the sense of shock. I was diagnosed just over a year ago & have had 3 endoscopies/ biopsies & 2 MRIs followed by appointments with the surgeon & gastrologist. Also because I initially lost weight & struggled to gain any I am seeing an endocrinologist so feel I am well monitored. However I should say I do not live in UK

[Jackie1947 in reply to Readingagatha]

I've not lost any weight and with EPI I cannot tolerate enzymes due to its contents.

[Readingagatha in reply to Jackie1947]

Please let us know how you get on gastroenterologist

[Jackie1947 in reply to Readingagatha]

I will. Thank you

[Rgee]

The thought of it ruins every minute of my life😥

[Jackie1947 in reply to Rgee]

That's sad for sure. I do worry about it in fact somehow i have managed distancing myself from it It might not happen and I don't want to wastel my life . What will be will be. I've lost two friends to this so I want to live by their example. Live life. Have you had counselling?

[Rgee]

I live in Toronto where pretty much much all of healthcare is free except you have to deal with long wait times, not scheduled to speak with with someone until August and i was diagnosed in February 😑But i do try my best just to accept it like you said you're self, just very hard to do

[Jackie1947 in reply to Rgee]

Long wait times in the UK. I was put on an urgent list Feb and seeing Gastroenterologist next month . I wish you well

[Skye_MC Administrator]

Hi Jackie 👋 We recommend yearly pancreatic cancer screening after a CP diagnosis. I would talk to your gastroenterologist about this during your appointment. You might also speak to them about over-the-counter vegan enzymes and see if they have any recommendations or have seen success with a specific brand. We are wishing you well!

[Jackie1947 in reply to Skye_MC]

Thank you. I will indeed ask about screening. Re vegan enzymes my GP contacted the hospital dept. The reply was not recommended as the contents are much lower than prescribed enzymes,no data available to back them up and expensive.

[Skye_MC Administrator in reply to Jackie1947]

Yeah, that's why we don't personally recommend them. It's unfortunate. There are some drug companies testing non-pork enzymes. Here's one the CF Foundation is funding: cff.org/node/721. I'll see if we can reach out to them and get a status update on how this is going.

[Jackie1947 in reply to Skye_MC]

Thank you

[suwinter]

Hi Jackie,

I well remember my shock on diagnosis too! I have autoimmune Pancreatitis (one of several autoimmune conditions that I have).

I was diagnosed in 2004 and am still going strong. I take Creon with meals and fortunately, once I was taking the correct dose, I tolerate it very well.

Hope you too find treatment straightforward.

[Jackie1947 in reply to suwinter]

Thank you for replying and you've cheered me up. I was tested for autoimmune Pancreatitis but it was negative. I have autoimmune Rhuemtoid arthritis.I only wish there was an alternative to pork based enzymes due to an allergy to pork. Seeing consultant next week so I will get a better of idea of what's going on. I've got calcification.

[suwinter in reply to Jackie1947]

do post re. how you get on with consultant. Good luck! x

[Pumpkin2009 in reply to suwinter]

Hi Jackie, I am not saying I have Pancreatitis, but have some symptoms that have me concerned. I do have lupus. I have chronic diarrhea, intense left shoulder pain, nausea and sometimes fever almost daily. This seemed to start in 2020 after having Covid. I wa salready underweight and have lost weight. I am seeing a new rheumatologist soon and maybe he will have some thoughts. I was wondering what symptoms you have experienced.

Thank you and healing hugs.

[TiffanysPancreas in reply to suwinter]

Hi, I see this is an older post but can you share your story? I am currently being told I have AIP by one Dr and another that I seen for a second opinion is not so sure & wants additional testing. I'm scared and confused.

[Joanhappy21]

BIU@🙂

[Joanhappy21]

I just want to share my story and possibly help someone. I have chronic pancreatitis due to selective IgA deficiency and undiagnosed celiacs disease, until I was 66. My symptoms were unexplained weight loss, frequent undigested oily floating bowel movements, acid reflux, rapid gastric emptying (test done), bloating from gas and fecal test shows beginning of low digestive enzymes. I have been prescribed Creon by my h gastroenterologist and am taking generic Beano and simethicone for gas. I just started taking cranberry extract and it seems to have a positive effect on reducing symptoms I have. I’m 82 years old, so not too worried about dying but doctors say my bloodwork is good and I’m OK. Hopefully this answers some questions that people have.