RE: Cholangitis Attacks/ Recent Stenting

[Guest guest]

Hey Genovieve,

Thanks for the feedback. I'm glad to hear all is going well with your stents. That gives me hope that this will actually help. The plan is they will graduate to larger caliper stents each time. They've told me that I hopefully will only have to do this for 6 months. As far as I know, they didn't have to reopen the sphincterotomy.

Jeff

As for the pain, did they have to re-open your sphincterotomy at all, or was it completely open still?Get the scoop on last night's hottest shows and the live music scene in your area - Check out TourTracker.com!

[Guest guest]

Hey Jeff,

Sounds like your stents are in almost exactly the same place as mine.

I'm currently in the midst of the stenting and replacing cycle as well,

with no end in sight as of yet. But the awesome thing, for me, is that

these stents improve my quality of life a million-fold, and I am not

exaggerating. The left side of my biliary tree is so occluded that my

endoscopists don't even want to inject dye on that side, for fear it

won't all drain out and will cause problems. When this dominat hilar

stricture to the right of the Y junction is swollen shut I can't

function--I'm too tired to carry my toddler up to her bedroom, and so

tired I can't get the dishes into the dishwasher even. My itching gets

so bad that no treatment has been successful with it, I get jandiced

and turn into a dandelion very quickly, etc. etc. etc.

WITH my stent, it is literally a 180 degree turn around for me--I feel

like myself, and like I have my life and my energy back! No turning

yellow, fewer cholangitis attacks, and the itching subsides as the bile

starts draining again. I usually start to notice this difference

within a week or two after the stent placement--I hope you have the

same success!

As for the pain, did they have to re-open your sphincterotomy at all,

or was it completely open still? I am convinced that causes me

(personally) severe pain--bad enough for narcotics--when that

sphincterotomy has to be messed with. I had unexplained pain that came

and went for about 10 days after my first stent placement, when the

sphincterotomy was originally performed. In all my ERCPs since that

time I have never again had this pain, and my sphincterotomy has been

fully open each time (it outta be, it's gotten a workout!).

Hope you start feeling well soon,

Genevieve

UC 1983, J-Pouch 1999, PSC 12/07

P.S. Thanks everyone for responding about my cholangitis attack

recently. I feel like I have my brain back, and I am definitely

starting to feel better, finally! I think after two cholangitis

attacks and the hospitalizations within 3 weeks of each other my body

just couldn't bounce back as easily the second time around.

>

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.

>

> I'm perplexed as to what is causing this [pain], but hoping it will

subside.

[Guest guest]

Hey Jeff,

Sounds like your stents are in almost exactly the same place as mine.

I'm currently in the midst of the stenting and replacing cycle as well,

with no end in sight as of yet. But the awesome thing, for me, is that

these stents improve my quality of life a million-fold, and I am not

exaggerating. The left side of my biliary tree is so occluded that my

endoscopists don't even want to inject dye on that side, for fear it

won't all drain out and will cause problems. When this dominat hilar

stricture to the right of the Y junction is swollen shut I can't

function--I'm too tired to carry my toddler up to her bedroom, and so

tired I can't get the dishes into the dishwasher even. My itching gets

so bad that no treatment has been successful with it, I get jandiced

and turn into a dandelion very quickly, etc. etc. etc.

WITH my stent, it is literally a 180 degree turn around for me--I feel

like myself, and like I have my life and my energy back! No turning

yellow, fewer cholangitis attacks, and the itching subsides as the bile

starts draining again. I usually start to notice this difference

within a week or two after the stent placement--I hope you have the

same success!

As for the pain, did they have to re-open your sphincterotomy at all,

or was it completely open still? I am convinced that causes me

(personally) severe pain--bad enough for narcotics--when that

sphincterotomy has to be messed with. I had unexplained pain that came

and went for about 10 days after my first stent placement, when the

sphincterotomy was originally performed. In all my ERCPs since that

time I have never again had this pain, and my sphincterotomy has been

fully open each time (it outta be, it's gotten a workout!).

Hope you start feeling well soon,

Genevieve

UC 1983, J-Pouch 1999, PSC 12/07

P.S. Thanks everyone for responding about my cholangitis attack

recently. I feel like I have my brain back, and I am definitely

starting to feel better, finally! I think after two cholangitis

attacks and the hospitalizations within 3 weeks of each other my body

just couldn't bounce back as easily the second time around.

>

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.

>

> I'm perplexed as to what is causing this [pain], but hoping it will

subside.

[Guest guest]

Hi Jeff,Wow. What a story. I'm glad you're home now, but you are right, going to the Mayo in Rochester every 6 weeks is a huge commitment of time and money. Hope your insurance covers a lot of this. Especially since your more local doctor could help you. Thanks for sharing your experience.Marie

To: From: Jeffsullivan@...Date: Tue, 15 Jul 2008 11:25:47 -0400Subject: Cholangitis Attacks/ Recent Stenting

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.

Jeff Sullivan Get the scoop on last night's hottest shows and the live music scene in your area - Check out TourTracker.com!

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