The complex world of pancreatitis

[CP4Life]

Hello everyone!

I’m so happy to see a dedicated section to CP and it’s related issues added to health unlocked!

I was diagnosed with CP in 2016 but they suspect I’ve had it much longer. I recently found out that I have pancreatic Divisum and would love to hear from others that have been diagnosed with the same. I’m on Creon x 5 years, pain patches since December and they are now recommending surgery that blocks the nerves to the pancreas now so I stop feeling the pain during attacks. The latest scans show mild pancreatic atrophy which worries me greatly although the doctors don’t seem too worried about it.

Looking forward learning more from others here!

Have a wonderful day everyone

[madonbrew Pioneer]

Hi CP4Life, Sorry to hear you are having so many pancreatic problems! I don’t have the added extra of divisum and my pancreas has basically burnt out now so I no longer get the pain, however I remember it well and just the intensity of it!!! I feel for you and hope the surgery to block the nerves will really help. You must be in a lot of pain to need pain patches and for them to suggest this surgery 😢

You are totally right in your saying’ the complex world of pancreatitis’! I’m 42 and have a rare autoimmune disease called IgG4 systemic disease that’s caused CP since I was 19. Now I am fully insulin dependent diabetic but have neither of the known types 🤦‍♀️😂 but my very own IgG4 type! When I first got sick I was treated with steroids which helped the inflammation but messed really badly with my head. They then changed me to azathiopine which didn’t help much either, so now I’m treated with Rituximab infusions. I used to take creon...although was never great to be honest taking it properly and somehow by miracle now seem to get away without it. I’m not sure how and maybe nutritionally I still need it for absorption. I’ll ask next time!

Maybe some of the others will know a bit more and will be along soon. It’s just a new group getting started so there’s only a few of us yet, but it’s gradually growing a little bit 😊

Take care and I really hope it’s a better kind of day!

Dee

[Shey7]

Hiy cp4life son was diagnosed at age 12 he was born with spink1 genetic chronic pancreatitis he has had a pain relief Implant which barely takes away his pain which is 24!7 he is 19 now no life no friends stuck at home he has bile salt malapsorptoin an severe slow transit had his gall bladder out an a partial pancreatectomy I wonder if u cud give me details of the nerve procedure u are going to have as I had discusseed something at Manchester but was told they did not perform it many thanks

[madonbrew Pioneer in reply to Shey7]

Dear Shey, I’m really sorry to hear about your sons pancreatitis story! I just wanted to write a message...I have a rare autoimmune disease that caused my pancreatitis, but I got sick with it aged 19 and they think I probably also had it since 12 years old. Mine isn’t genetic but caused me many issues in my early 20’s.

My story is obviously very different in many ways but I am now 42 and am doing ok in the scheme! I just want to offer some hope that things can improve...I really hope he can get this pain somehow under control!

I remember being 19 and seeing all my friends go off to uni and feeling like I was getting totally left behind in life. If he ever wants to chat to someone who knows what it’s like (differently but similarly) then just drop a line here anytime! Even just feeling you’re not alone can help..mentally if not physically!

Anyhow, take care both of you!

Dee 😊

[Shey7 in reply to madonbrew]

Thankyou I will let him know.. I'm sorry for what u have been thru it is truly a difficult illness not many can really understand