I haven't been on in a while just so much going on. My 9 year old had to open heart surgery in November. She is doing great. My question is this...I went to see my Gastro this week to get results of another upper scope. He took several polyps and biopsies. He wants to send me to a Hepatologist because my ALP doesn't to seem to be changing and I am on Urso and Ocaliva. I stay very fatigued and the itch is not much better. He also wants me to have a colonoscopy because of the polyps he found during the upper scope, he said it would be best to check. That worries me because I don't know if he thinks something may be wrong. I wanted to ask if anyone would know what the Hep Dr could do that my Gastro hasn't? I know the new Dr specializes in Gastro, Hepatology and PBC also in transplants. Thank you for listening. Hope everyone is well.
Lisa
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Lisa15
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Wow! What a lot you have had on your plate, so glad to read your daughter is doing so well.
As a guess I would suggest that your fatigue and itch are exacerbated by the stress you have and are going through.
If your gastro doctor is suggesting a colonoscopy then I reckon he/she is looking to get a better picture of what could be seen with the scope. I believe early detection of anything going on in the bowel is a good thing.
and they describe hepatology as -"Historically, hepatology grew out of gastroenterology and so became a subfield of it, although today it appears to be emerging as a freestanding medical specialty."
I also think that any doctor who has a speciality in our condition will have knowledge of what is happening earlier than a gastrologist whose speciality is perhaps somewhere else.
Thank you. The fatigue has been going on since before diagnosis last year. I am taking something for the itch which helps a little. I am just worried about the colonoscopy because of him mentioning he wanted to do it because of the polyps he found during the upper scope. It just seems like it is always something. I am having rotator cuff surgery this month also so I am just feeling overwhelmed I guess. Thank you again and I hope all is well.
Hi Lisa. Sorry to hear about your daughter but very happy for you her surgery went well.
I have had both colonoscopy and gastroscopy done as well as the new liver scan and several biopsies over the last 18 + years.
I believe also in knowing the whole picture and your Dr can manage your condition better with all this information. Please dont stress it as stress is our enemy. If your worried discuss this with your Dr. Nothing worse than trying to second guess things.
I hope you have a great result and if there are polyps better have them dealt with now before they get the chance to get worse and then change.
Thank you. You are right stress is not good. I try not to worry but as you know that is easier said then done. What exactly is a liver scan? Is there a certain stage that you have it? My Dr hasn't ever mentioned it. I've had the upper scopes, ultrasounds and liver biopsy. I hope you are doing well.
Hi Lisa. I had this scan recently and it's done by echo. So sorry I can't remember the name of it but there are others that know the name. It is excellent way to stage your PBC. I was lucky as after 18+years I have nearly zero damage. They use an instrument similar to an ultra sound. It is just placed between ribs and bounces echo's through the liver. They can tell by the elasticity of the liver as to the degree of liver damage.
It certainly put my mind to ease about my PBC.
Hope this is of help and that some one comes to our rescue with the name of the scan.
And yes stress is our arch enemy. So be informed and let your Dr do the worrying.
Yes thank you very much. My memory is terrible. So there you have it Lisa. Maybe ask for the Fibroscan to be done and then you can be as informed as much as possible and you can then stress less.
A hepatologist specializes in liver diseases. GI doc treats the whole system. If you have the opportunity to get care from a hep doc, it might be better. Ask him though how often he treats it. How long have you been on Urso and Ocaliva? Are your numbers coming down at all? about the colonoscopy, if you have had polyps in the past it is important to have another scope usually in 3-5 years depending on biopsy results.
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