I see that you just recently joined Connect and I would like to welcome you. I'm sorry that your post was not responded to earlier. However, I was interested in your post, as I have not heard of this disorder before. I did some research on the National Pancreas Foundation website and found a link with some information, https://pancreasfoundation.org/patient-information/ailments-pancreas/pancreas-divisum/. Perhaps you have already read this? If not, please take some time to familiarize yourself with the information.
It appears that this disorder is often without symptoms. Is this your situation as well? How was your pancreas-divisum diagnosed?
I see that you just recently joined Connect and I would like to welcome you. I'm sorry that your post was not responded to earlier. However, I was interested in your post, as I have not heard of this disorder before. I did some research on the National Pancreas Foundation website and found a link with some information, https://pancreasfoundation.org/patient-information/ailments-pancreas/pancreas-divisum/. Perhaps you have already read this? If not, please take some time to familiarize yourself with the information.
It appears that this disorder is often without symptoms. Is this your situation as well? How was your pancreas-divisum diagnosed?
Thank you for the information. I’ve had two acute attacks. The first time was in July 2018 and I was in the hospital nine days. The second time was September 2021 and I was in seven days. Each time my Lipase was around 30,000. The pain was excruciating. I was given Dylaudin and Tramadol and Toradol by IV around the clock. I had no intake by mouth. The doctors thought it was brought on by sulfasalazine because I have no risk factors. No gall bladder, non drinker and very low cholesterol, etc. After CTs and MRIs which showed no damage to pancreas the only thing left was that it was medicine induced. . I stopped the sulfasalazine and things seemed to be ok until I ate three days of fried foods and the second attack happened. This time a pancreatic endoscopic ultrasound was done and they found the divisium. As you said, most people never know they are born that way. Now that I understand it, I eat much healthier.
I appreciate the added information, @mjemjm, it is good that you finally got a diagnosis. It appears as if maintaining a healthy diet is important in order to keep from having further attacks. Is this what you've been told?
As the Sulfasalazine medication seemed to be a trigger for your first attack, did your doctors replace that drug with something else?
I appreciate the added information, @mjemjm, it is good that you finally got a diagnosis. It appears as if maintaining a healthy diet is important in order to keep from having further attacks. Is this what you've been told?
As the Sulfasalazine medication seemed to be a trigger for your first attack, did your doctors replace that drug with something else?
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.
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.
It sounds as if you have a good medical team on your side. Having an endocrinologist as well as a rheumatologist is a great combination given the health issues you face.
Take a look at the discussion on RA and feel free to post there as well.
Pancreatic divisum and Barretts esophagus
I have had a dull stomach pain almost 2 months. I may have one good day and then I get very fatigued. I take pantoprazole (1 a day 40 mg) and Creon 12,000. 2 pills before meals and 1 pill for snacks. Total 8 pills a day. I had pancreatitis. My question is , I am not sure what
to eat now. The dull ache is always there no matter what I eat. Does anyone know who specializes in both these problems?
They did an ERCP test and I was told they rarely find pancreatic divisum as they usually find it when they do autopsies.
In my 20’s, they said I had gall stones. When I was operated on they shot dye into the bile ducts and found no stones and that I was born without a gall bladder! My answer then was, I would never have an attack again it was all from my 5th lumbar vertebrae! I only had a couple attacks over the next 50 years. This all has been so frustrating as I sure don’t want to develop cancer from this. They said I have lived with this problem all my life and surgery would be a very delicate operation and I should live with it. I am now 78 years old but have always been a very active person.
Pancreatic divisum and Barretts esophagus
I have had a dull stomach pain almost 2 months. I may have one good day and then I get very fatigued. I take pantoprazole (1 a day 40 mg) and Creon 12,000. 2 pills before meals and 1 pill for snacks. Total 8 pills a day. I had pancreatitis. My question is , I am not sure what
to eat now. The dull ache is always there no matter what I eat. Does anyone know who specializes in both these problems?
They did an ERCP test and I was told they rarely find pancreatic divisum as they usually find it when they do autopsies.
In my 20’s, they said I had gall stones. When I was operated on they shot dye into the bile ducts and found no stones and that I was born without a gall bladder! My answer then was, I would never have an attack again it was all from my 5th lumbar vertebrae! I only had a couple attacks over the next 50 years. This all has been so frustrating as I sure don’t want to develop cancer from this. They said I have lived with this problem all my life and surgery would be a very delicate operation and I should live with it. I am now 78 years old but have always been a very active person.
I did this so you can easily connect with other members like @mjemjm@harper7745@divadenise@slb50 who also have experience with pancreas divisum and can share their dietary tips.
As @mjemjm stated in an earlier post "the diet is everything for me."
Geri, it looks like you're looking for a specialist who has experience with both Barrett's esophagus and pancreas divisum. Have you considered requesting an appointment at Mayo Clinic or getting your physician to make a referral?
I did this so you can easily connect with other members like @mjemjm@harper7745@divadenise@slb50 who also have experience with pancreas divisum and can share their dietary tips.
As @mjemjm stated in an earlier post "the diet is everything for me."
Geri, it looks like you're looking for a specialist who has experience with both Barrett's esophagus and pancreas divisum. Have you considered requesting an appointment at Mayo Clinic or getting your physician to make a referral?
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?
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Hello @mjemjm
I see that you just recently joined Connect and I would like to welcome you. I'm sorry that your post was not responded to earlier. However, I was interested in your post, as I have not heard of this disorder before. I did some research on the National Pancreas Foundation website and found a link with some information, https://pancreasfoundation.org/patient-information/ailments-pancreas/pancreas-divisum/. Perhaps you have already read this? If not, please take some time to familiarize yourself with the information.
It appears that this disorder is often without symptoms. Is this your situation as well? How was your pancreas-divisum diagnosed?
-
Like -
Helpful -
Hug
1 ReactionThank you for the information. I’ve had two acute attacks. The first time was in July 2018 and I was in the hospital nine days. The second time was September 2021 and I was in seven days. Each time my Lipase was around 30,000. The pain was excruciating. I was given Dylaudin and Tramadol and Toradol by IV around the clock. I had no intake by mouth. The doctors thought it was brought on by sulfasalazine because I have no risk factors. No gall bladder, non drinker and very low cholesterol, etc. After CTs and MRIs which showed no damage to pancreas the only thing left was that it was medicine induced. . I stopped the sulfasalazine and things seemed to be ok until I ate three days of fried foods and the second attack happened. This time a pancreatic endoscopic ultrasound was done and they found the divisium. As you said, most people never know they are born that way. Now that I understand it, I eat much healthier.
-
Like -
Helpful -
Hug
2 ReactionsI appreciate the added information, @mjemjm, it is good that you finally got a diagnosis. It appears as if maintaining a healthy diet is important in order to keep from having further attacks. Is this what you've been told?
As the Sulfasalazine medication seemed to be a trigger for your first attack, did your doctors replace that drug with something else?
You might also be interested in connecting with @slb50 who posted a similar problem here: https://connect.mayoclinic.org/discussion/need-diagnosis-snd-treatment/
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Helpful -
Hug
2 ReactionsYes 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.
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Like -
Helpful -
Hug
1 ReactionIf you are seeing a rheumatologist for rheumatoid arthritis, you might be interested in a discussion group on Connect about that problem. Here is the link, https://connect.mayoclinic.org/discussion/rheumatoid-arthritis-ra-introduce-yourself-and-meet-others/.
It sounds as if you have a good medical team on your side. Having an endocrinologist as well as a rheumatologist is a great combination given the health issues you face.
Take a look at the discussion on RA and feel free to post there as well.
Pancreatic divisum and Barretts esophagus
I have had a dull stomach pain almost 2 months. I may have one good day and then I get very fatigued. I take pantoprazole (1 a day 40 mg) and Creon 12,000. 2 pills before meals and 1 pill for snacks. Total 8 pills a day. I had pancreatitis. My question is , I am not sure what
to eat now. The dull ache is always there no matter what I eat. Does anyone know who specializes in both these problems?
They did an ERCP test and I was told they rarely find pancreatic divisum as they usually find it when they do autopsies.
In my 20’s, they said I had gall stones. When I was operated on they shot dye into the bile ducts and found no stones and that I was born without a gall bladder! My answer then was, I would never have an attack again it was all from my 5th lumbar vertebrae! I only had a couple attacks over the next 50 years. This all has been so frustrating as I sure don’t want to develop cancer from this. They said I have lived with this problem all my life and surgery would be a very delicate operation and I should live with it. I am now 78 years old but have always been a very active person.
Hi @geri1, welcome. I moved your post to this existing discussion in the Digestive Health group.
- Pancreas Divisum: Does anyone else have this and know they have it? https://connect.mayoclinic.org/discussion/pancreas-divisum/
I did this so you can easily connect with other members like @mjemjm @harper7745 @divadenise @slb50 who also have experience with pancreas divisum and can share their dietary tips.
As @mjemjm stated in an earlier post "the diet is everything for me."
Geri, it looks like you're looking for a specialist who has experience with both Barrett's esophagus and pancreas divisum. Have you considered requesting an appointment at Mayo Clinic or getting your physician to make a referral?
-
Like -
Helpful -
Hug
1 ReactionYes, I have been thinking about coming to Mayo Clinic. I go to my Primary Dr. tomorrow and that was going to be a question to ask.
Thank you.
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Helpful -
Hug
1 ReactionThe 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?