Are you new here? Welcome!

[KarenB12]

I'm stoked we've hit 100 members already! So to all our new members, Welcome!

I'm Karen, I've had chronic pancreatitis for 36 years and I'm super happy to be here. I was part of a similar community for almost 6 years before it closed and I learned so much from others during that time. I hope to learn more from all of you as well.

I've already heard from so many of you who have different issues & diseases & complications related to pancreatitis that I didn't know existed. I look forward to meeting more of you and hearing your story.

If you haven't already, be sure to check out this Report: mission-cure.org/our-approa...

I was so happy to know that those of us with Pancreatitis FINALLY have a voice thanks to Mission: Cure. ♥

I'll quit rambling now, but before I go, I have one question for everyone:

What is the one thing you find hardest to accept about your illness? It could be physical, emotional, intellectual, spiritual, or something else entirely. But I'd like to hear about your struggle to come to terms with pancreatitis, and how that has impacted your life.

I look forward to hearing from all of you!

Thanks

K ♥

[MrHoldyOne]

What I find the hardest to accept about this condition is that I'm constantly told there is really nothing I can do to cure the illness. That when an episode happens, all I can really do is ride out the pain... take some pain meds and well, good luck.

I struggle so much with that, especially in this modern age we live in.

[KarenB12 Ambassador in reply to MrHoldyOne]

Thanks, MrHoldy. I understand the frustration. My first doctor was an ex-army doc who had dealt with a ton of pancreatitis in the field. That was his only answer. Bedrest

Nothing by mouth

Pain & nausea meds

2-weeks, min.

No real explanation otherwise. It is unfortunate that we're not much closer to a 'cure' after all these years.

But I've come to believe while there may not be a cure, per se, we aren't powerless against it either. There are things that we can do to lessen our chances of getting an attack, lighten the load on our pancreas, etc. I've found a number of herbal remedies helpful in certain cases. Just knowing how our individual bodies react to certain foods or substances can go a long way.

How long ago were you diagnosed?

[MrHoldyOne in reply to KarenB12]

Diagnosed in 2014, so now I'm a pro at identifying and managing the pain. Sometimes, it does become so acute that I have to head to the ER.

Over 2018-2019, I had over 10 ERCPs where they drained my duct and did some work there. After completing all those procedures, I have experienced minimal attacks and pain (probably like once or twice a year now).

However, one consequence of all those surgeries is I now have Type 3C diabetes...

It's the pain management that is what is tricky at times.

[KarenB12 Ambassador in reply to MrHoldyOne]

Sounds like it's run you through the ringer. It's good to hear the attacks are down!

I had the duct drained, stents, etc., but always stopped short of surgeries. I was very fortunate to have seen the specialist I did back when making that decision. He took time to explain the options possible and their actual odds of truly helping - long-run - I always felt the cure was worse than the disease.

So, I'm super happy when I hear it's helped someone

Do you control your diabetes with oral meds or insulin?

Pain management has and always will be tricky. Hopefully, you have a doctor that understands the disease enough to understand the pain.

🤗

[Sofia_MC Partner in reply to MrHoldyOne]

MrHoldyOne , so sorry to hear about your experience with this terrible disease. Pain management is something we discuss often with patients.

Are you on any pain medication? If you're located in the US you're probably familiar with the many opioid regulations that make it nearly impossible for chronic pain patients to receive adequate pain relief, which can be very frustrating. If you're interested, a chronic pancreatitis patient wrote about his experience with meditation for pain management, you can read about it here: mission-cure.org/blog/medit...

Of course, meditation is not meant to be a cure for pain. Only pain medication can do that. But maybe this is a strategy that could help you cope.

[madonbrew Pioneer in reply to MrHoldyOne]

Hi MrHoldyOne, Sorry you have this horrible illness to contend with too but welcome to the forum!

Oh bless you having type 3c diabetes..that no one’s ever heard of! I have my own different type of diabetes caused by my rare autoimmune disease called IgG4 disease…so I have my own type..IgG4 diabetes! But until they figured that out, my diagnosis was Type 3c.

Are you taking pancreatic enzymes?

[Rgee in reply to MrHoldyOne]

100%!

[madonbrew Pioneer]

Just want to say Hi and welcome to everyone here! Wow, 100 members here already! It’s amazing because other than hospital trips, I’ve never known anyone else with pancreatitis so it’s great having this forum in place as a place for support and knowledge!

Looking forward to getting to know you all more!

Dee 😊