📣 Discussion Topic: What other conditions do you have as a result of chronic pancreatitis?

[Skye_MC]

Hi everyone! 👋 Pancreatitis is a complicated disease, and it can go hand-in-hand with other conditions. Have you personally experienced this? 💙

[deniseinmilden]

Hello Skye!I hope all's good with you and things are going well.

It's yet another lovely morning in the UK. With the ability to give us 4 seasons in one day, our weather rarely sticks at anything and it's welcome that it's stuck at "fine and sunny". Are you having good weather too?

I have the most basic, uncomplicated idiopathic CP, but it causes severe EPI.

I get SIBO (though am pleased to say I have been free of it for 4 months at the moment), and vitamin and mineral deficiencies.

I have been dxd with pernicious anaemia (athough the test is unreliable) and I have ongoing severe vitamin B12 deficiency - I need to inject 1.5mg daily.

I have general malabsorbtion, including of any tablets I take.

As a consequence I have osteopenia.

I seem to have metabolism issues too:

I don't seem to convert other forms of iron to haem iron so can get iron anaemia symptoms, which resolve with eating enough red meat and fish, even if my ferritin levels look OK. I try to keep my intake of sources of calcium at least 2 hours apart from my heam iron sources to limit calcium/iron lock-up.

My body doesn't seem to methylate properly and I need to take a source of methyl, which I do as methylfolate.

Unrelated to my CP I have heart arrhythmia, including spells of AV Block: 2nd degree, Mobitz I (Wenckebach Phenomenon).

Also unrelated, I get long duration migraines which usually last 4 to 10 days, but I've had one for a fortnight now with no sign of relenting. About 10 years ago I used to get them for 3 weeks at a time but hormone therapy had cured that. Because my absorption of drugs from tablets has declined, I was getting a problem again and had to switch to depot injections. I'm wondering if they just aren't strong enough and so am going to try taking pills in addition - anything to be able to get rid of the migraine! I was blaming a super-high temperature during covid recently but I'll try extra progesterone to see!

I have a lousy immune system and it has been discovered in tests that I hardly produce antibodies to vaccines. I think some of my proneness to infections, and viral infections in particular, is in part due to my gut microbiome being affected by the CP and hence poorer digestion and absorption.

I have osteoarthritis in my knees and I believe that this may be in part due to my malabsorbtion/metabolism issues because the methylfolate helps with this enormously but I don't know why.

Sorry to give you a bit of a catalogue, but you did ask!!

Good luck with your research and thank you for doing it!

All the best!

[Skye_MC Administrator in reply to deniseinmilden]

I appreciate the "catalog" Denise, haha!

Where I'm at, it's switching from hot to severe rain and hail in a matter of minutes, but luckily I'm used to it – it's tornado season. I'm glad you're having nice weather!

Also glad to hear you've been SIBO-free for a while! I think you (or someone in our little community) have mentioned SIBO in the past and would like more information about it. A little announcement, but we just welcomed a patient education project manager onto our Mission: Cure team, and she's going to help speed up our resource process. So, hopefully, we'll have more info out about SIBO soon!

As for the other conditions, these do seem to come with CP causing malnutrition. I'm curious, are you on pancreatic enzymes since you have EPI? What dosage do you usually take?

Thanks!

[deniseinmilden in reply to Skye_MC]

Hello Skye,Thank you for your reply - I'm sorry for the delay in getting back to you.

Wow, tornado season! That doesn't sound good. I hope you can keep safe.

Great news that you are getting some help at work.

I know I have definitely mentioned SIBO and malnutrition in the past: I think more research on it would benefit lots of people as it comes up quite regularly on other fora I belong to.

Yes, I'm on Creon 25,000s.

I need approximately 1 capsule per small handful of food. I have as much of a problem digesting fibre as I do protein and fat, and so very much do have to take it with fruit and veg, despite knowing that some people can get away without it.

I need 5 or 6 for a main meal, 3 or 4 for a sandwich and less for snacks and smoothie drinks.

All the best, Denise

[S-Sparrow in reply to deniseinmilden]

Hi deniseinmilden thank you for sharing your illness history. I'm sorry to read that you suffer from quite a few illnesses. As someone who also has Chronic CP diagnosis, I'm curious as to how you found out about all the other illnesses? Did you have certain tests that confirmed these things or a particular specialist that was good at digging in to get to the root of the issues? I've had seemingly random illness symptoms for the last few years and it feels like there is more going on than my CP but non of the specialists that I see here in the UK seem to know what to do next. Currently diagnosed: I have Chronic idiopathic CP, Inflammatory Bowel Disease and chronic migraines. I also have an undiagnosed thoracic back pain that might be from the CP or something else. I also have type 3C diabetes from the CP. I'm keen to try and get to the bottom of the issues but am struggling to know what to try next. If helpful to know, have taken part in the Mission Cure Pain programme organised by John Hopkins Hospital and that's been helpful. Their conclusion was an undiagnosed mild connective tissue disorder and I'm undergoing further tests but haven't had anything show up so far that confirms this diagnosis. Bw, Steve

[deniseinmilden in reply to S-Sparrow]

Good morning!

I already had an interest in biology, and, having worked with livestock almost all my life, I've had the chance to work with some great vets so I've mostly used the knowledge - and particularly diagnostic technique - gleaned from what I've done to ask for referrals to the right Drs to get confirmed answers.

If you know what you're doing, so can ask specific questions, you can get the right tests done to rule out or confirm things.

That, and a lot of chance luck!

Poor investigation when I was ill in my 20s lead to a diagnosis of chronic fatigue syndrome/ME and thereafter I couldn't get any more testing from my Drs, despite being sure I could get improvements in my health.

My B12d/PA was dxd following a referral from my dentist and a chance meeting with a locum pharmacist. (All the Drs were clueless and/or unhelpful).

At some point I was sensible and didn't make a fuss when they wanted to cut my leg off for (thankfully) an inaccurate cancer dx and didn't offer any alternative treatment for what was actually a broken leg (partly due to weak bones).

Due to my pragmatic attitude to the complete bungle over this (I ended up getting my leg sound myself), my GP accepted that I had some knowledge and from then on agreed to run the few tests I asked for. Through online research, I discovered a world class GI consultant at Addenbrookes hospital, which isn't impossibility far from here, and he agree to refer me to him too.

They then found the CP, EPI, SIBO, slow guts, etc, and have been lifesavers in giving me treatment, and arguing with my Drs (my best GP seems to have mostly stopped working) to make sure I can get the treatment they prescribe (my surgery mess me about over it!).

Mostly getting help seems to be about having a lot of knowledge yourself to start with, plus the tenacity to keep persisting when you are being fobbed off by inept consultants, until you manage to find someone who is good and willing to actually look for the problem and help!

[S-Sparrow in reply to deniseinmilden]

Hi  deniseinmilden wow, sounds like a lot to deal with for you. I have to say, my experience of misdiagnosis is somewhat similar. Could you let me know the GI consultant at Addenbrookes hospital that you see please? Thanks for sharing.

[deniseinmilden in reply to S-Sparrow]

Mr Jeremy Woodward.

I don't think I've seen him specifically but all his team have been amazing so far. 🤞Faultless care... really shows up all the rest!

[Jackie1947]

Such as?

[Skye_MC Administrator in reply to Jackie1947]

Hi Jackie! Conditions we see in people with CP include exocrine pancreatic insufficiency, bone disease, gastroparesis, type 3c diabetes, etc.

[Jackie1947 in reply to Skye_MC]

I've got EPI but no treatment as allergic to pork so battle it out. I had blood test to see if it was another immune disease but no. I already have one. Seeing Gastroenterologist for the first time next month. I'm still in shock after surprise diagnosis a few months ago.

[Susaberry]

For some reason, I can’t eat anything until dinner. If I do eat during the day, it causes nausea and pain. As a result, I’ve developed intermittent gastritis. Sometimes chewing a couple of tums helps. I won’t take PPIs because it causes bone density problems. I have early onset osteoporosis. My b-12 levels are low so I inject b-12 once a week. I’ve developed IBS-C as well.

[Skye_MC Administrator in reply to Susaberry]

Thanks for sharing Susa, and I'm sorry to hear that. I'm curious, are you on pancreatic enzymes?

[Susaberry in reply to Skye_MC]

I just now saw your reply. I don’t take enzymes because they make the constipation worse. I’m at a loss as to what to do.

[Susaberry]

I was taking creon. However, it made the constipation worse.

[annjaylee]

Good morning Skye! I live in the US and my son has been dealing with chronic pancreatitis for 18 months. More time in the hospital than out. Since his surgery July 2022 he has developed abdominal fistulas that break open a lot! They can't seem to get to the root of the problem. He is currently on TPN and a feeding tube in the small intestines. He's had many other issues, but this seems to be his greatest problem. He is severely underweight and no eating doesn't help. Any suggestions? All he wants is to go home, it is now 4 1/2 months hospitalized. He is a 35 year old single male and I moved in to care for him. Wishing all the those who suffer such a debilitating disease. Terri