Do you have pain while having food. How do you manage it. I am acute turned chronic now and experiencing pain and problems now..

I have the same problem...I was quite ok having normal food till last week. But for the last few days I can't eat any thing hard...My doctor says that it's chronic now and will take some time to settle down. Don't worry take liquid food for the time being like clear soups juices some fruits etc..

My 10 year old daughter was just diagnosed in October with the gene mutation SPINK1. I've been reading as much as is can about the genetic mutations and it does increase the risk of cancer. Her pancreas has no function. We attempted putting in a stent but it didn't help. Do you run labs to check for pancreatic cancer?

Hi Maddie!

I am so very sorry about your pain. Have you considered an islet cell transplant with total pancreatectomy? This is a surgery in which your entire pancreas is removed and islet cells from your pancreas are transplanted to your liver. This transplant gives you a chance to avoid being a diabetic, however, the odds are likely that you will become a diabetic with this surgery. The good news is that the surgery should decrease your pain significantly, if not totally eliminate it. Plus, there is a very strong chance of developing pancreatic cancer with the hereditary form of chronic pancreatitis. The good news of this type of surgery is that you will not have to worry about ever developing pancreatic cancer. This is the most deadly cancer.

I highly recommend you contact Mayo Clinic in Minneapolis, Minnesota. You can get into see them without a referral from a doctor. They are considered the best hospital in the world for treating your disease.

Please know that I am praying for you, Maddie. I welcome any questions you may have for me. I have chronic pancreatitis. Mine is not hereditary, however.

Blessings!

Hi there - my 2 daughters now aged 11 and 13 have both had attacks of pancreatitis for several years now. My 13 year old had them when she was under 2 but we didn't know at the time that that was what was happening, she was properly diagnosed at the age of 7 and she has now been diagnosed with CP. They both have the Spink1 gene and the 11 year old also has a pancreatic divisum. Its a big problem. We follow a low fat diet and have recently cut down massively on sugar. Vitamins are essential as antioxidants. They also take Creon with meals. They still get attacks and the fatigue for my eldest daughter is appalling. She is reading this as I write. It sounds silly but it is good to know we are not alone in this. Pain and nausea with the attacks we deal with using oramorph and paracetamol and fasting. The hardest part in some ways is keeping up the good intentions and not buying food we know we shouldn't eat. As a family we eat the same things as that makes life simpler. As their mother I worry about the future for them but often they are stronger and more positive than I am. We appreciate the good days so much. If anyone has any helpful thoughts about combatting the fatigue that would be great. When they are well they exercise a lot and that certainly helps with sleep. Best wishes to all on this forum. #dailystrength