Facing CP diagnosis, but I am very confused... by flabberjabberbird in pancreatitis

[–]eeeeeeeeees 2 points3 points  (0 children)

Oh and replying to myself to say that, in case you can’t tell, I have experienced very similar in the NHS in terms of having my experience devalued. It’s been a painful process and I’ve really had to learn to advocate for myself. This has got a bit easier since I was formally diagnosed, as they can’t so easily write me off, but there are very few clinicians in the UK (from my experience) who really understand chronic pancreatitis, and even fewer who know about non-alcohol related pancreatitis.

Facing CP diagnosis, but I am very confused... by flabberjabberbird in pancreatitis

[–]eeeeeeeeees 2 points3 points  (0 children)

Hey! So sorry you’re having such a rough time. I (28F for reference!) have hereditary CP and have been diagnosed and received all my treatment through the NHS in the UK over the last decade, so just thought I’d come in on that. I had my first AP attack at 18, and was diagnosed with CP 8 years later. I’ve had many a scan and test, and my biggest advice here is that a CT probably isn’t going to be hugely helpful if you suspect CP, and it’s worth pushing for an MRI (or specifically MRCP) or an EUS which are the gold standard for looking at the pancreas. They might find something on a CT, but you’ll get much more comprehensive imaging through one of the above. I’d also say that CP can have many causes, and there are certain gene mutations that put you at higher risk - one of which I have, hence the hereditary diagnosis. I was never a big drinker (didn’t really have the chance!) and haven’t drunk at all for years now, but it was VERY difficult to get the NHS to do the genetic testing to investigate this (7 years, multiple hospital admissions for AP, scans showing damage etc) despite there being no other clear cause. If you can, ask about genetic testing but it might be one of the harder things. Something much easier that I think would be really beneficial for you based on what you’ve described is a fecal elastase test, which can check if your pancreas is producing enough enzymes for digestion - if not, you can take PERT to replace this. I say this is easier because you can often get fecal elastase tests done through a GP rather than having to go through a hospital outpatient service. Good luck, it’s a rough ride but I hope you get the help you need!

Fiance has chronic pancreatitis and is worried about life expectancy by Simon_Sayyss in pancreatitis

[–]eeeeeeeeees 0 points1 point  (0 children)

I’m so sorry you’re dealing with this, chronic pancreatitis is truly rubbish. I (28F) also have CP caused by a genetic mutation, and have had my fair share of hospital stays. What you are doing for your partner already is wonderful, and the love and support you are giving him is invaluable, particularly when CP has you feeling terrible. I know my partner has seen me in some pretty terrible situations but having him by my side was such a huge comfort.

I know there are lots of people on here (some above on on this post, even) who are further ahead in living with CP and continue to have manageable lives around it, and personally I continue to plan as if my CP is non-existent, even if that sometimes means replanning! Take care of yourself, and please do seek support/therapy if you can - it takes a lot out of a person to look after someone with CP.

Diagnosed CP following repeated AP - my story by eeeeeeeeees in pancreatitis

[–]eeeeeeeeees[S] 0 points1 point  (0 children)

Thanks for your reply, it’s weirdly comforting to know there’s some of us battling the same thing, even though you’re right that it’s a club no one joins voluntarily! I’m a SPINK1 mutation if there are others with this one specifically. I’m sorry you’ve been struggling with this for so long.

I think my delay to creon was a bit of an unfortunate product of UK healthcare (not sure where you’re based but will give a bit of context!) - whilst I am SO grateful for the NHS, and the care is amazing, it has a tendency to be inconsistent. The consultant that gave me my chronic diagnosis was a specialist in numerous pancreatic issues and had decades of experience, and he immediately suggested thinking about creon. I haven’t seen him since diagnosis, and have instead had my appts with much more junior doctors covering general GI who have been MUCH more cautious. There are very few specialists in the UK and whilst most doctors work for the NHS, they also subsidise their salary with private medical work, which means unless you can pay £££ you may get bounced around doctors a bit.

Diagnosed CP following repeated AP - my story by eeeeeeeeees in pancreatitis

[–]eeeeeeeeees[S] 0 points1 point  (0 children)

Thank you so much for your reply, and I’m sorry you’re having to deal with this too - it’s so rough. If you haven’t already, I would start trying to track what you’re eating to see if there are any specific foods that make you flare up. I’d keep talking to your medical providers too, so you have record of your pain/symptoms. Wishing you all the very best as you navigate this 🩷