The agony of this birth defect is something I’d never wish on anyone. It has caused Chronic Pancreatitis (I am not a drinker). Am I the only one here who has it? Has anyone found anything that helps?
While most people with pancreas divisum will not have symptoms, it sounds like you belong to the minority who develop abdominal symptoms which have developed into chronic pancreatitis. How long have you had pancreatitis? Do you find eating earlier in the day helps?
I had my first pancreatitis attack 1 year ago. At the time they thought it was my gallbladder. It was removed and then 10 months later I had another attack. I just had n MRICT and discovered I have Pancreas Divisum. I had never heard of this before. I see my GI doctor next week. They also told me I now have diabetes. My A1c just hit 6.5 so I am thinking my pancreas may have caused that. I am able to keep my blood sugars low, but now I am concerned with both. I am also seeing a dietician in a couple of weeks. I don't even know what questions to ask. I just got the lab reports an hour ago. I don't know what to eat or what to do. I am a non-drinker so that isn't an issue.
Yes the diet is everything for me. My pancreas doesn’t drain properly, so fat, etc backs up and the pancreas produces more enzymes which inflame it. I try to avoid fats and sugars as much as possible, but my GI
Doctor said tha was not realistic, but everything in moderation. Ever since the last attack it makes me nauseous if I even think about eating fried food.
When I stopped the sulfasalazine,
My rheumatologist started me on hydroxichloroquine two a day. I also started seeing an endocrinologist who discovered I don’t produce a sufficient amount of cortisone so I take a 5 mg prednisone daily. The arthritis always hurts but I can live with it.
I have had pancreatitis my whole life. I was first hospitalized at 13 years of age with divisum. I have spent more than 2 years (in total) in the hospital from pancreatitis divisum. Once I started (finally) taking creon, very religiously, the madness finally stopped. I do eat very healthy, but I eat plenty of good fats, like olive oil and avocado. I def stay away from anything fried, saturated fat. My veins are totally shot from all of the demerol and phenegran I have had. They can hardly get an IV in now and if they do, it doesn't last 24 hours. We are a select few that most of the world doesn't understand. My dad died of pancreatic cancer. So it is a little scary.
I have had pancreatitis my whole life. I was first hospitalized at 13 years of age with divisum. I have spent more than 2 years (in total) in the hospital from pancreatitis divisum. Once I started (finally) taking creon, very religiously, the madness finally stopped. I do eat very healthy, but I eat plenty of good fats, like olive oil and avocado. I def stay away from anything fried, saturated fat. My veins are totally shot from all of the demerol and phenegran I have had. They can hardly get an IV in now and if they do, it doesn't last 24 hours. We are a select few that most of the world doesn't understand. My dad died of pancreatic cancer. So it is a little scary.
Hello,
My 15 year old daughter was diagnosed a few months ago with Pancreatic divisium. I want to start her on enzymes sooner rather than later. I'm so glad to see that they helped you. Did you start at a particular does of Creon?
Hello,
My 15 year old daughter was diagnosed a few months ago with Pancreatic divisium. I want to start her on enzymes sooner rather than later. I'm so glad to see that they helped you. Did you start at a particular does of Creon?
Glad you are getting her the help she needs. I hope she listens to the doctors and doesn’t think she’s super woman like I did. I could have saved myself a lot of misery. I take creon 24,000. Two with meals and one with snack. Creon has a coupon out there (a 6 month supply is $6500) that reduces the cost to $0 and the cost of medicine goes toward the deductible. The key is you have to have insurance to get the coupon! I wish you all the best. It will teach her to eat healthy and pay attention! 🙏
Glad you are getting her the help she needs. I hope she listens to the doctors and doesn’t think she’s super woman like I did. I could have saved myself a lot of misery. I take creon 24,000. Two with meals and one with snack. Creon has a coupon out there (a 6 month supply is $6500) that reduces the cost to $0 and the cost of medicine goes toward the deductible. The key is you have to have insurance to get the coupon! I wish you all the best. It will teach her to eat healthy and pay attention! 🙏
Hello,
My 15 year old daughter was diagnosed a few months ago with Pancreatic divisium. I want to start her on enzymes sooner rather than later. I'm so glad to see that they helped you. Did you start at a particular does of Creon?
Concentration of the pancrealipase is based on a formula each manufacturer uses specific to their product taking one’s body mass into account. Each brand then needs to be optimized-determining the number of capsules to take based on meal type (quantity and fat content). Keeping a daily food diary is helpful along with using a digestion calculator.
I was just diagnosed with pancreatic division yesterday at Mayo. This follows five days in the hospital with pancreatitis. I didn’t have any of the normal risk factors so at least I know why now.
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Hi @renocmh
To help connect you with other members living with pancreas divisum, like @geri1 @mjemjm @harper7745 @divadenise @slb50 and others, I moved your post to this existing discussion:
- Pancreas Divisum: Does anyone else have this and know they have it?: https://connect.mayoclinic.org/discussion/pancreas-divisum/
While most people with pancreas divisum will not have symptoms, it sounds like you belong to the minority who develop abdominal symptoms which have developed into chronic pancreatitis. How long have you had pancreatitis? Do you find eating earlier in the day helps?
I need a GI doctor in Savannah Ga. anyone recommend one?
I had my first pancreatitis attack 1 year ago. At the time they thought it was my gallbladder. It was removed and then 10 months later I had another attack. I just had n MRICT and discovered I have Pancreas Divisum. I had never heard of this before. I see my GI doctor next week. They also told me I now have diabetes. My A1c just hit 6.5 so I am thinking my pancreas may have caused that. I am able to keep my blood sugars low, but now I am concerned with both. I am also seeing a dietician in a couple of weeks. I don't even know what questions to ask. I just got the lab reports an hour ago. I don't know what to eat or what to do. I am a non-drinker so that isn't an issue.
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1 ReactionI have had pancreatitis my whole life. I was first hospitalized at 13 years of age with divisum. I have spent more than 2 years (in total) in the hospital from pancreatitis divisum. Once I started (finally) taking creon, very religiously, the madness finally stopped. I do eat very healthy, but I eat plenty of good fats, like olive oil and avocado. I def stay away from anything fried, saturated fat. My veins are totally shot from all of the demerol and phenegran I have had. They can hardly get an IV in now and if they do, it doesn't last 24 hours. We are a select few that most of the world doesn't understand. My dad died of pancreatic cancer. So it is a little scary.
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1 ReactionI live down the road on SSI. If you find someone, I'd love to hear from you!
Hello,
My 15 year old daughter was diagnosed a few months ago with Pancreatic divisium. I want to start her on enzymes sooner rather than later. I'm so glad to see that they helped you. Did you start at a particular does of Creon?
Thank you for your post!
Glad you are getting her the help she needs. I hope she listens to the doctors and doesn’t think she’s super woman like I did. I could have saved myself a lot of misery. I take creon 24,000. Two with meals and one with snack. Creon has a coupon out there (a 6 month supply is $6500) that reduces the cost to $0 and the cost of medicine goes toward the deductible. The key is you have to have insurance to get the coupon! I wish you all the best. It will teach her to eat healthy and pay attention! 🙏
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Like -
Helpful -
Hug
2 Reactionsthank you!
Concentration of the pancrealipase is based on a formula each manufacturer uses specific to their product taking one’s body mass into account. Each brand then needs to be optimized-determining the number of capsules to take based on meal type (quantity and fat content). Keeping a daily food diary is helpful along with using a digestion calculator.
https://digestthis.ca/pert-form/#gf_1-
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2 ReactionsI was just diagnosed with pancreatic division yesterday at Mayo. This follows five days in the hospital with pancreatitis. I didn’t have any of the normal risk factors so at least I know why now.