Cholangitis Attacks/ Recent Stenting

[Guest guest]

After recent months of having cholangitis attacks about every other week, I finally broke down and scheduled an appointment to move forward with ERCP stenting procedure at Mayo (Rochester). This was offered to me back in October '07, but I had been putting it off, hoping that things would settle down. My previous ERCP ('05) here in Florida at Mt. Sanai (Miami), left me with word from the endoscopist that my ducts were just too much of a mess to attempt any kind of therapy, much less brushings for cancer. They told me then that about all I could do was wait until I was sick enough to be listed.

So, here I am, almost one week post ERCP at Mayo....they were able to get up to the dominant stricture in the hilar region. They placed two 7 French plastic stents...side by side in the common bile duct that each branch off at the hilar area. They also were able to do brushings of the area for cholangiocarcinoma. Dr. Gores thinks cancer is unlikely since I have had PSC for so long. He explained that they more commonly see it in people who are more recently diagnosed, which I found surprising. I was under the impression that the longer you had PSC, the more your chances grew of getting cancer....guess not.

I was told my chances of getting sick with either pancreatitis or cholangitis after the procedure were about 50/50 since I am prone to both. I had intense nausea for the first 24 hours and threw up once about 12 hours after the procedure. I have had some ongoing liver and pancreas pain, but not full blown pancreatitis. The last several days I have only been able to eat small meals and have had trouble sleeping. I sleep about 4 hours then wake up in pain. Last night was the first night I have made it through almost the entire night without pain. However, still having a dull ache in my pancreas. I had a sphincterotomy on my pancreas many years ago at s Hopkins by Dr. Kalloo. I'm perplexed as to what is causing this, but hoping it will subside. Back home now and going to follow up here with some tests. I am supposed to go back to Mayo about every 6 weeks from now until the first of the year for replacement of stents....HUGE commitment of time and money, which is partly why I had put it off.

So, I guess the point of this story is "practice makes perfect" and that it pays to seek out the best you can. I was told that my endoscopist from '05 was one of the best in S. Florida...he couldn't do a single thing to help me. The doctors at Mayo informed me that in their endoscopy practice they see about 2 cases a week with strictures as severe or worse than mine and that what they were able to accomplish was essentially unremarkable to them. Barb told me several years ago that when my doctor in Miami said it wasn't possible, that probably wasn't true....I guess she was right.

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