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Biliary problems!


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#1 dynamicdebz

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Posted 12 March 2009 - 11:48 PM

Hi everyone: I am a lurker on here and have rarely posted. I am in the UK and have CREST syndrome, was diagnosed about 12 years ago. I have all symptoms but don't have much hardening of the skin. My worse symptoms are Raynaud's for which I have iloprost infusions every year and have loads of esophageal involvement.

The reason for my post today is I have had a lot of tummy problems. I had my gall bladder taken out 2 years ago and it was badly infected but since then have had continued gall bladder type pains and pains half hour after eating in my bowels ever since with several admissions to hospital and loads of tests. All the tests proved okay. However 3 weeks ago I was rushed into hospital with the biliary type pains and my liver enzymes and bilirubin was up.

The doctors decided to do an ERCP (Endoscopic Retrograde Cholangiopancreatography) to cut a hole in my bile duct and put in a pancreas stent. When they tried this under general anesthetic they found my stomach was unusually swollen and the sphincter was almost totally closed up so bile not getting through. They couldn't even get a smaller camera through, so the procedure had to be stopped. I am awaiting results of the biopsies that they took but they have said they believe now that it is related to my scleroderma.

They have now discharged me and left me with the conundrum of deciding to have major surgery to have the problem solved. My options are continuing problems or major surgery that might not work. I also have a slight hiatal hernia and always have gastritis. I take 40mg of someprazole every day.

Has anyone else had similar problems or had the surgery done? Advice would be appreciated.

By the way, my email address has changed since I was last on here. How do I update my information?

#2 jefa

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Posted 13 March 2009 - 01:54 AM

Hi, dynamicdebz. Glad you decided to step forward again. I can't answer your questions from personal experience, but here are a few links which may be useful to you.

Liver and Spleen Involvement with Scleroderma

Gastrointestinal Involvement (Main Menu)

Hopefully others will step in with their own relevant experience.

As for your email address change, you can do it through the My Controls link in the yellow toolbar above. The email link is towards the bottom of the left column.
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#3 sallyann

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Posted 19 March 2009 - 11:01 AM

Hi, I have had diffuse scleroderma for 20 years now and skin involvement is very bad. I also have arthritis. 10 years ago I started with symptoms similar to yours: vomiting bile, going off my food, lots of flatulence and rumbling, heartburn, etc. This can go on from 1 day to three weeks. I am just getting over an episode now. My local hospital has not examined me like you have been done but I have had some tests that revealed nothing amiss. I am wondering if it is my liver that is affected now . Hope you go on OK and your problem is resolved .
regards, sallyann

#4 jefa

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Posted 19 March 2009 - 06:03 PM

Hi, Sallyann. I see this is your first post, so I would like to welcome you to the ISN Sclero Forums. I am sure you will find this a great place for information and support. Are you seeing a sclero specialist or a rheumatologist? What have your doctors attributed your gastric problems to?
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#5 sallyann

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Posted 20 March 2009 - 03:41 AM

Hi jefa

I had an operation 10 years ago for suspected bowel cancer but thankfully nothing was found. 3 days after the operation I started with this sickness and have had it ever since on and off. They just put it down to slow motility, a twisted bowel and 1 or 2 other things but nothing specific. I just put up with it now as nothing seems to help. I had a few tests and things like the camera down and up, scans, etc. but unless the doctors don't know what they are looking for, nothing was diagnosed really. So that is my position up to date. Thanks for your interest.

Regards,
sallyann

ps The only things they have not tested as far as I know are the liver, gall bladder and pancreas.