Chronic pancreatitis with EPI

[Briana1]

I have a question for anyone of you whom have been diagnosed with Autoimmune Pancreatitis. Did the dr look at your IGG4 and see that it is very elevated and diagnose you. I have chronic pancreatitis with EPI and my pancreatitis Dr who is a billary doctor and a hepatologist as well is trying to figure out what type of chronic pancreatitis I have with my EPI. He thinks I have autoimmune pancreatitis. How were you diagnosed with your autoimmune pancreatitis? Thank you!

[madonbrew Pioneer]

Hi Briana, I have IgG4 RD which has affected my pancreas and kidneys, and historically my bile ducts, gallbladder and liver.

I’m 43 years old now (in UK) and got sick with pancreatitis aged 19. So this is going back to year 1998. They couldn’t figure why I had pancreatitis and in about 2000/2001ish my consultant at the time flew to Japan where there was an international conference on a possible ‘autoimmune chronic pancreatitis’ . Apparently the conference back then was based on just 15 of us worldwide with only 100 diagnosed cases worldwide (the majority in Japan)

I was basically one of the first diagnosed with with AI chronic pancreatitis…even more so in the UK. Because I was so young and a unicorn 🦄 I had many tests done with my blood results, biopsy results etc being used as research all over the world.

To be really honest, because it was such a long time ago and I was one of the first diagnosed cases and I was having so many tests done, I can’t remember how they came up with my exact diagnosis. My IgG4 levels were definitely elevated and I had a pancreas biopsy which was done fairly early on…2000ish.

I was treated with steroids initially which did help a bit with the inflammation however I can’t mentally tolerate steroids long term…they give me suicidal depression. And as soon as they were stopped my IgG4 levels went up again. They then treated me temporarily with azathioprine but that too seemed to leave me with suicidal depression…I unfortunately seem to have severe reactions to some drugs 😕

I’m now treated with Rituximab infusions which seem to keep things at bay….well at least stop my kidneys from getting worse (eGFR roughly between 33-42)

Pancreatitis wise, my pancreas is basically totally scarred now with hardly any function. I have EPI and have been insulin dependent diabetic for a while now! The diabetes is tricky to control because every now and then my pancreas seems to squeeze out a tiny bit of insulin somehow so I could eat the same thing for a week with extremely different glucose levels…so I take insulin after meals (with my consultants say) so I know how much to take.

Sorry for the mammoth reply! I don’t know how much help it is, but that’s basically my story!

I hope they manage to figure your diagnosis soon!!

Dee x

[waz2 in reply to madonbrew]

Hi there i have always thought i had ibs had problems since i was a child but my latest doctor has said it is chronic pancreatitis have been for a colonscopy they said i had polyps which they removed and inflammation i also went for endoscopy on tuesday which was a horrific experience they said inflammation again now just waiting for ct scan the surgeon asked me if i drank a lot i rarely drink at all my father died with pancreatic cancer and diabetes 1 runs in family they gave me omeprazole which i thought was great to start with till my legs filled up with fluid and my hands were really sore and my face came out in blotches i only take them an odd time when i know the pain is starting maybe when i have ct scan i will know what is wrong with me thanks for listening cheers lizzie

[madonbrew Pioneer in reply to waz2]

Dear Lizzie, I’m sorry you’ve been feeling so poorly too! It’s a nightmare when things take so long for the medics to work out what’s going on! I really hope your CT scan sheds some light on things and that you soon have some good treatment and pain management!

Take care!

Dee 🌺

[waz2 in reply to madonbrew]

hi dee thanks for your lovely reply i got a phone call from professor he told me ct scan was ok but inflammation present he was,nt all that helpful told me to eat mackerel!!!!! so i have started taking mastic gum which i think helps and am going to see dietician next week she is very nice and it helps me when i talk to her thanks again dee for your kind reply love lizzie x

[madonbrew Pioneer in reply to waz2]

Hi Lizzie, Sorry your appointment wasn’t more helpful! It’s frustrating when you wait forever for results and then get told nothing overly helpful!

I guess on a positive note, there must not have been anything too significant to report from the scan because the professor would have reported more to you. It’s sounds a bit random being told to eat mackerel by him though!! I hope the gum continues to help a bit and that any inflammation goes down soon! It seems a bit odd that he didn’t suggest anything more to help with that.

Take care of yourself!

Dee 🌺

[waz2 in reply to madonbrew]

thanks dee he said that he was going to get in touch with gp and give me an alternative to omeprazole but still waiting i,d rather go down the alternative route as bad side effects with omeprazole i think it just masks symptoms thanks again dee for your kind post cheers lizzie x

[Briana1 in reply to madonbrew]

It definitely helps! I was diagnosed in 2019 with chronic pancreatitis with EPI and my dr doesn’t understand why so much inflammation so he gave me Igg4 blood test and some others and now I have appt with him in june. Definitely helps it took awhile for me to get my diagnosis. I loved with acute and got wrong diagnosis. Finally a good diagnosis and im still in lots of pain even on enzymes so Dr trying to help me more. I have had 9 surgeries since 2014. It’s sucks being in pain. I had a ton of colon cut out and my gallbladder out and more colon out. A mesh for my incisional hernia and that hurts so bad also. Thank you so much for your story it really does help. I am sorry you are going through so much as am I. I am glad you told me your story because I can ask Dr more questions now. Thank you so much! 💝

[madonbrew Pioneer in reply to Briana1]

Dear Briana, sorry for taking ages to reply! How are you doing now? Goodness, 9 surgeries in those years bless you! That must have been horrific for you!

I had my gallbladder removed but didn’t have gallstones but apparently my gallbladder had been chronically inflamed and not functioning at all.

I so hope they manage to figure things out for you soon and somehow can get your pain under control.

My IgG4 disease was first treated with prednisolone but I can’t tolerate it long term, then they tried azathioprine but I seemed not to tolerate that either. Now I have Rituximab infusions which seem to be a good treatment for me!

Please keep me updated with how you’re doing!

Dee x

[Briana1 in reply to madonbrew]

Thank you! It’s fine! I am glad to have you responded back. Yes lots of surgeries and lots of pain when they have to put my organs back after they looked everything over after cutting it out. My gallstone was big and my gallbladder was in horrible condition. It was inflamed, swollen, it was in bad condition that my dr was worried it had lost blood flow. I was Lucky that didn’t happen! It was so messed up because I had it for probably 2 or 3 years maybe more chronic gallbladder pain. It had bile all over it and was stained in bile. It was enlarged. I would have to advised you wait it said on the op report when they sent my gallbladder to the lab to have them look it over. It was just in a bad way! It was also very infected. So I was given a strong antibiotic so after she removed it. The infection didn’t spread to my entire body and become septic. I’ve had sepsis before it is not fun. I was so sick! No one listened as usual when I complained About the pain. They never do! This isn’t the first time they thought I was fine and I wasn’t. It happens to me a lot. I don’t know why? Doctors! Ugh! Anyway thanks for the advice! I appreciate it! I have my appt in June later in the month sometime to see about my blood results. To see what he thinks! Thank you so much for sharing your story! It means so much to me! Talk to you later! Briana 🤩😃

[Briana1 in reply to madonbrew]

I am worried about Diabetes. I have family members with diabetes. I have lots of health conditions. I am 44 and older drs tell me I am on more meds then them which isn’t funny. My dr also advised to watch out for pancreatic cancer. Thanks again for your take on them. I also had gallstone out it hurt so bad and no diagnosed me for a year with it. I almost died because dr didn’t know I had perforated bowel so I have been through the ringer also. Not fun! Been misdiagnosed a few times. Thanks again for your response! It really helps me! ❤️

[madonbrew Pioneer in reply to Briana1]

I’m 43 and am insulin dependent now. The taking the actual insulin isn’t too bad…it’s such a fine tiny needle. The bigger problem I have is with knowing how much insulin to take because sometimes my pancreas seems to squeeze out a tiny bit of insulin but basically it’s a dead organ in me.

My consultant and I agreed together that it’s better for me to take insulin after I eat so I know what I actually need rather than before as I could eat exactly the same thing 4 days in a row and sometimes glucose would be 20 and another day 5?!!

You really have had a tough time! Please be kind to yourself mentally too. It’s a lot to have lived through!

❤️

[Briana1 in reply to madonbrew]

I bet I have heard some people tell that while taking creon they have to be careful because it may give them too much insulin. That’s scary! My pancreas is pretty bad also! I have malabsorption because my body won’t absorb and have lost tons of weight that’s how my dr diagnosed me at first with chronic pancreatitis with EPI. I’m on tons of creon! On top of other meds I take for other conditions so many! It’s so frustrating! I have so many chronic conditions! Thanks! I need to be easier on my self sometimes! You too! Take care! Briana 🙂

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hi Briana 1,

I think I may have AIP but here in UK AI diseases are under researched and the locum doctor I can only speak to by telephone is dismissive about AI conditions despite my long term diagnosis with Adult Onset Stills Disease aged 17. May I ask what your initial symptoms were and how your diagnosis was achieved if you don’t mind. I am bing referred for a colonoscopy and gastroscopy despite three clear stool tests.