Hey girl,
I saw they found the pressures were high. So are you home now? How are you feeling? Are you having a flare? I pray you are doing ok. Fill us in when you can, hon.
Thinking of you,
Keri
ps. I am not glad that they found something, BUT I am glad you feel validated. So many (healthy) people don’t understand why we need that.
I might still have problems but the day to day pain and total number of attacks should go down. Since there isn’t a permanent way to increase the size of the ducts, it isn’t a cure.
I don’t remember the other options right now. I’m on drugs and a little foggy. I won’t be going to MN to get the stents out. My GI doc in Omaha will do that.
Time for more sleep.
Amanda
I got home to Nebraska last night. The percoset made me car sick so I didn’t take any for the last four hours of the drive. I got a full night of sleep for the first time in days! My friends and family are taking turns so I can be at home in my own bed with my schnauzer dog.
I did not have a flare. Dr. Freeman has a very good record with that. He is an amazing doc. Did I tell you all that he designed the stents that are used?
Anyhow, all my pictures show normal anatomy. But Dr. Freeman said that the manometry showed the pressures coming from the bile duct and pancreatic duct were the highest he has seen. He told my mom that he can’t imagine the pain I would have had on a daily basis. So nice to have a doctor say that.
He made cuts on the sphincters on both the ducts to help cut down the pressure. He also “cleaned” them out to try and make them more open. He finished by putting in two stents that he wants out in 2 weeks.
He said that if this doesn’t work there are other steps to take. He said he is going to leave my gall bladder alone for now because it wouldn’t help to take it out. But that is just my situation - yours could be different.
Overall, my first ERCP was not too bad. I still have pain but I can deal. No pancreatitis so that’s good!
Thanks for all your support and thoughts!
Amanda
Soooo,
This is why you have had pancreatitis many times??? Yes?? Do they expect that you will no longer get it after the stents come out? As far as what is next if this doesn’t work, what would that be? I hope this does work I was just curious is he discussed what else could be done.
My surgery is scheduled for 10am Thursday( have to be there at 7am) I am feeling pretty good about the procedure itself, but not the outcome as far as the cause of the AP , lol. I feel like it isn’t going to remedy the pancreatitis. Just get me closer to a diagnosis. Maybe that is wrong to go thru with it, but what if it is my gall bladder, ya know? I have had several people tell me that they had no stones that showed on tests but “sludge” once they got into the surgery. We shall see.
Hope you heal quick!
Keri
ps. do you have to go back to this doc to get the stents removed?
Hey Amanda,
My doctor in Milwaukee, Wi says I have Pancreatic Divisum. I go to see Dr. Freeman as well in October. I am a bit nervous because every time I have an ERCP done, I get severe pancreatitis. Not to mention, I have read that ERCP can do damage to the pancreas. I haven’t made up my mind if I am going to do the ERCP in October with Freeman or if I will just go to consult. What tests did he perform on you when you first went there? Was he a good doctor…personable, caring, good listener? I just don’t know what to expect. Do you have sphinctor of oddi dysfunction then? Hope you are doing well now!! My prayers are with you.
DD1
Dr. Freeman was all of the above. He will do a consult with you before deciding to do the ERCP. And while you have had flare ups from them before I would give him a chance. He said only 1in 10 of his patients get pancreatitis bc of the specific type of stents that he uses.
I had an MRCP with secretin the day before the ERCP and it was great. The first radiology test that hasn’t required me to drink something. That is what makes me sick!
He did find sphincter dysfunction but the manometry measures also showed that the pressures were what was causing my everyday pain. He said not many doctors do manometry.
His words changed my whole outlook. His PA and nurses are great. And there are some wonderful nurses on the recovery side in the hospital too. I was thinking of sending a couple of the nurses something special, I make jewelry. Has anyone ever done that? Is it appropriate?
He met with me for around an hour the day before. The next morning, he came to see me before the procedure. My ERCP actually went for two hours. He went to talk to my mom after he was done. He stopped by that evening to see me. He had done 6 ERCPs that day! The next morning, Laura his PA came by and later in the morning Dr Freeman came by after the labs showed no elevated enzymes. He told me that I could leave the hospital that day but he didn’t want us to start for home. He told me if I thought I needed one more day that I should stay and not rush it. I ended up stating another day.
And, the Days Hotel on University avenue has a great hospital discount and a free shuttle to the hospital & Freeman’s office. My mom didn’t have to try and figure out the big city traffic until the day we left.
Plus a fridge in the room. The strangest shower faucet I have ever seen though!
Time for my nap.
Thanks Amanda!
I feel much better now. Hope you have a great day!
Amanda, thank you so much for sharing so much of your experience. I just receive my appointment with Dr. Freeman today for Nov. 5. It seems so far away, considering the daily pain. With the reduction of pressure to the duct are you experiencing pain relief?
I have a divisum. The duct is dialated and there is s a stricture so small on the one end my GI could not place a stent. That is what has lead to the referral to the U of M.
It sounds like you are doing better. I am very glad to hear this and hearing your experience with the providers I’m going to be seeing helps too. Good luck with your stent removal coming up. Janelle