Hello All,
Does anyone here have pancreatic divisum?
No, but for years they thought that I did. Just this past summer, they did an EUS and found that I did not. Apparently this is going to change what my treatment will be.
Sorry I couldn’t help!
Rob
I was told by my GI specialist that he thinks I have a divisum. However, I have been referred on to the U of M and am awaiting a November appointment. So I’m not even being treated as of yet. Sorry I cant help. I would be just as interested in some information about it too. takecare Janelle
Hello,
Thanks for responding. I have an appointment in Minnesota on October 20th so I’ll let you know what I get out of it. Best of luck to you in November! Let me know what happens with you too.
Danielle
My plans have changed. My mother is the best advocate, she is really my champion. While I have trying to cope with everything, my daughter, husband travels, working full time and all of this new sickness. She was busy making phone calls. Apparently, Dr. Freeman works both at HCMC and the U of M, which are totally different health systems. My doctor referred me to the HCMC which only had a november appt… My mother called the U and started talking to schedulers and the doctor’s nurse got me an appt. at the U on Monday the 13. I am so relieved. I really didn’t know how I was going to make it a whole month feeling this way and not doing anything about it. Good luck to you on the 20th. I will let you know what happens. Janelle
Janelle,
Wonderful news! I am seeing a team at Cleveland Clinic in Florida the 16th-
Hoping for a Dr. Freeman-type. Please let me know how it goes!
Jackie
Snowhite,
Let me know what happens? I am so curious and hopeful for you!
Snowhite,
I forgot to ask you…what tests do they have scheduled for you? They are only doing an MRI for me which I think is interesting.
Sorry I didn’t reply to you sooner, for some reason I didn’t see this message. I have had thus far, a CT, an Upper GI with ultrasound, and an ERCP. The ERCP is where they came back with the suspected divisum and said that a stent could not be placed because the stricture was too small. So on Monday I’m having a MRCP with secretin. My understanding of this is that it is an MRI and they inject the secretin that makes the pancreas start working and they take pictures of it. I did a little research on the MRCP and there was little out there. What I did find said that it was relatively new.
That’s all I know. How did all of this come up for you? How did they find the divisum? I went in thinking I had colitis or something. Had the CT and splenic vein thrombosis was found. 80% of the time that is caused by pancreas dysfunction, so they looked there. Otherwise I would have not had any idea. Have a good night.
Snowflake-
The MRCP is not really new but doing it with secretin is new. And it is so much better because when I had my MRCP with secretin, I didn’t have to drink any crap! So, it is basically an MRI with an IV. I’m pretty sure you have had an IV before so I won’t tell you about that 
The MRI does make some feel claustrophobic. I figured it would bother me but I was fine. It is loud and makes weird noises but the time seemed to to by faster than I thought it would.
I don’t know if there is a medical reason for it (related to the secretin) but I felt pretty good afterwards and usually tests make me feel like crap.
I can’t remember if you are seeing Dr. Freeman or someone else, another doctor might do the secretin in combination with something you drink. He said the MRCP is a road map for him.
Amanda
Janelle,
I went to a GI doctor in Milwaukee WI who was suppose to be real good. I am not sure anymore. Ever since I went there and found out I had Divisum, I’ve been feeling like crap. He put a stent in twice and ever since has been like a bad nightmare. I have weeks of feeling good and then weeks or months of not feeling good. I’m not sure if that is really what I have or if something else is going on. Everything is so new to me too that I am confused and frustrated. Life for me has changed so much and I’m just looking for some answers. Did you see Dr. Freeman yesterday? I am dying to know how it went because I go next week on Monday. I too am scheduled for an MRI but he didn’t say anything about the IV or MRCP thing you were talking about. I wonder if that’s what I am having too. Please let me know as soon as you can. Too bad we weren’t going on the same day and could meet in person. How cool would that be, huh? Well, best of luck to you. Fill me in when you have time.
Danielle
Hi Danielle, You were having your appointment yesterday and I was wondering how you are doing? Which clinic were you seen at. I spent most of the day at the Masonic Cancer Clinic (this is also where I saw Dr. Freeman) in the waiting room. It is part of the U of M. Maybe we crossed paths and didn’t know it. How did it go? Do you have a divisum? Janelle
Hello,
I was looking for you, but I am not sure what you look like. I am sure we did cross paths. My appointment was at the Masonic Cancer Center as well. It was at 2:30. I do have divisum and the worst thing is Dr. Freeman thought the doctors here in Wisconsin screwed me up. He thinks I never had problems, but now I can not get better because they did so many ERCP’s. I am on a lot of vitamins to boost my energy and health because I am so run down. My MRI showed nothing unnormal. He wants me to just hang in there for awhile to see how things go. No more fiddling by my pancreas. How are you doing? I have been praying for you. What did Dr. Freeman say on Monday? Take Care!
Danielle
Danielle -
I am so happy to hear that you got in to see Dr. Freeman!! I’m sorry that he doesn’t have an immediate solution, but his response shows that he doesn’t want to do anything that might make things worse for you! My “home” doctor (who referred my to Freeman) held back on ERCP’s because he wanted to make sure that if one was done, it was done with a clear purpose in mind. After hearing your story and others it does make me feel like a lucky girl to have such great doctors at home that look at the big picture.
It sounds like your past situation didn’t do you any favors - no wonder you feel so terrible now. When I was still having problems, I found that getting vitamins through different juice or liquid forms caused less pain. Naked Juice is readily available in my town and while it runs $2.50 a bottle, it definitely helped me keep going. And, I could drink a little bit at a time. I can’t remember if you are diabetic too, but I also would drink Tang occasionally. It is high in sugar but has lots of vitamins. Vitamin Water still has Vitamins in it and is recommended for people who have troubles (even though health nuts who don’t have any health problems don’t like it), but it also has sugar in it. It is just another option…I still can’t take vitamins in pill form!! And, I always keep Smart Water on hand for those days that I have diarrhea or vomiting to keep myself hydrated. It has electrolytes in it and sometimes - Gatorade is just too much for me to handle when I feel like crap!
AND - my MRI showed nothing abnormal either. But, that isn’t enough for Dr. Freeman to give up on you. 
Amanda
Thanks for your prayers Vonnie! having trouble just scheduling an appt. to see U.A.B. Doc. scheduler has been out of town. In the meantime on nausea,pain meds and enzymes. Although, gastro specialist said he didn’t think the enzymes would work. I’m giving it a whirl anyway …
What’s your diagnosis Vonnie? If you don’t mind me asking?
Mk
Hi,
I am new to the forum and saw that you have pancreas divisum. I just found out that I have pancreas Divisum.
14 mos.ago I was unable to have ercp procedure due to blockage. They were able to go through my side through my liver and do the sphincterotomy. Ended up getting acute pancreatitis and other complications. stayed in the hospital for two weeks. It was definately worth it! even with acute pancreatitis after recovery I was in alot less pain then before the procedure. Unfortunately, its… baack…Had a pancreatitis attack two weeks ago. thats when the doc said I had pancreas divisum. ANother sphincerotomy is needed with stent and some type of pancreas surgery seems pretty complicated
love to hear from you no one I know can relate to what I’m dealing with here.
Wow MK. You have a plate full. I will be praying for you. Let us know how you are doing and when all the procedures will take place. I’ve never heard of a situation quite like yours. God Speed, keep the Faith.
Vonnie