We are so glad to have you here. What... - Chronic Pancreati...
We are so glad to have you here. What is your top reason for joining this community?
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My main reason for being here is because of the wonderful admins here and to keep in touch with the brilliant webinars and other information sources that you provide. I find it's also helpful to share and learn about others' experiences - it's not a common problem so it's good to know I'm not alone.
My GI team at Addenbrooke's, UK, are phenomenal, but because they are so good they are in such high demand it is better to access information and perspective from this forum.
The admins, and Skye_MC in particular, have made a huge difference to my whole life and outlook with their kindness and support.
Hello...am interested to hear that Addenbrooke's are so helpful. I'm in their area, but after my GP ruled out pancreatic cancer and diagnosed CP, all I've had is a phone call with a dietitian at WSH. Although I'm purchasing enzymes ( from a reputable source, but I had to sort it myself), I'm aware that I could end up in trouble with this 'DIY' treatment! Perhaps you've been diagnosed longer/have had surgery/ have more complex history... Like you, I've found this site a lifeline, not just for CP, but also for thyroid issues over several years.
I was waiting a year for my Gastroenterology Dept referral appointment and about halfway through I received an email asking me whether I was now ok, didn't need an appointment (i.e dead!) or wanted to stay on the list. I selected the latter option and continued to wait.
Recently, a GP, one of a succession of locums, thought that my 30 year battle with my digestive system, with up to 15 toilet visits per day, and its often catastrophic manifestations (poo-ed pants in public places) - could be caused by something called Pancreatic Insufficiency. By the way at about this time I found out that Pancreatic Insufficiency is a known side effect of Coeliac Disease that I was diagnosed with in 1993 and that had taken the blame for my poor digestion performance.
Armed with a prescription stating "Take one capsules with meals" (!) I started my EPI journey. I soon learnt that one per meal could make a slight difference but a chance encounter alerted me to Dr Steven Freedman of Harvard Medical School who explained in a video a proper dosing regime. That routine boosted my intake to 9-10 per day with noticeable effects - much reduced flatulence and toilet visits and no uncontrolled last second **** explosions.
Sadly suddenly the supply of Nutrizym 22 dried up and after much to-ing and fro-ing I was switched to Creon 25000 - but almost immediately that too became unobtainable,and forecasts of the dearth of supply extending into next year or even 2026 started to emerge.
So I then sat back and awaited results - and sure enough increased farting, toilet visits and accidents returned - though not to previous levels. This was interesting as at around the time that EPI meds were prescribed I started massive dose probiotic capsules in the hope of improving my 'biome'....could this indeed be part of my solution?
My GP has now offered a limited supply of Pancrex that I hope along with the probiotic dosing will at least stablise my system at its current but manageable level..
Shock!! last week my Gastro appointment suddenly happened and I had the most reassuringly thorough discussion with the promise of follow-up scans, tests and investigations..... so watch this space
