Re: Re:Multiple ERCP's?? JoAnne

[Guest guest]

Hello JOAnne,

My doctors do say exactly the same thing and when the pain goes out of hand they would say well it is MELD, and sorry we cannot do much about a Tx. But i try my best to keep the battle going on, and so continously, updating and reminding them about my symptoms. With regard to my liver functions, my ALK/ALT/AST, are now more elevated, specially after the Mayo study stopped me from taking Urso. I also have fatique and my sleeping is so difficient.

About these doctors, you would need to keep pressing on be and more firm with them about symptoms like the pain, itching,-----etc. And if that does not work then i guess one have to find a more knowledgebale doctors, specially in PSC, and also very important that they be communicable and there for you, because you and myself do know that these episodes of high pain for example, are no fun to tolearate at our own.

For my PSC, i am on Nortriptyline [25mg] for the pain. Now my doctor want to increase it to 50mg, and i am not too excited about taking too much of a medicine. I have been also taking Hycosamine, to help the w/the bowel irritation, plus OTC, pain killers, in low doses, of course.. Do you have Ulcerative Colitis, too? if so you are probably being treated for that. I do suffer from Gerd, too. I use Prilosec [prescribed 40mg]. I do take it for some time period , 3 to 4 wks and then stopped for an equal amount, depending on how i feel. Sometimes, also Mylanta, but just for an instant, relief.

I do hope that you will feel better. By the way i live in Contra Costa County, CA. I think you are more to the south, right? Take care.

PSC/UC

I have been getting ERCP's every 6 months and this was supposed to be my 6th in August. I made the point to the Doc that since the last two ERCP's didn't turn up any sludge or stones could we just roll the dice for a while? He made me wait until they received my blood results, but let me go without it. I am having ULQ pain from time to time, but other than that I feel fine.Don't get in a rut and just go along with the every so often plan if your situation doesn't require it. It will cut down the medical bills and the ERCP is less than pleasant. So until anything changes in my bloodwork, I am rolling the dice. Of course if I start feeling bad I will go in. They wanted to give me ERCP #6 the next morning after #5 since we went to the ER with pain. A transplant doc was on call that night and I was there until 1:00 AM, but we talked some reason into them when the blood work came in.My pain

is more frequent, the writing is on the wall, but I want to put it off as long as possible (within reason of course). in MinnesotaPSC 2006-- Ian Cribb P.Eng.

[Guest guest]

Thanks ,

It helps to hear that I am not the only one feeling these symptoms; the doctors are always questioning me. They have not diagnosed me with UC although I have all the symptoms, they are saying it is acid and they think it going down instead of up sometimes. We are starting with Prilosec for two weeks them stop. I get Advil 200 mg over the counter for pain and if the diarrhea gets worse I get to take Imodium. I think I need to find someone that is more knowledgeable in PSC, but the problem is I have an HMO and my hands are tied. So I am going to take your advise and pressed on and see if they will elevate my case. It is hard when your lab look good and mine do!

I am in southern California right in-between Riverside and San Diego near Temecula.

Thanks for your advise!

JoAnne Wisdom

PSC 2007, Riverside CA

ear Temecula.

I have been getting ERCP's every 6 months and this was supposed to be my 6th in August. I made the point to the Doc that since the last two ERCP's didn't turn up any sludge or stones could we just roll the dice for a while? He made me wait until they received my blood results, but let me go without it. I am having ULQ pain from time to time, but other than that I feel fine.Don't get in a rut and just go along with the every so often plan if your situation doesn't require it. It will cut down the medical bills and the ERCP is less than pleasant. So until anything changes in my bloodwork, I am rolling the dice. Of course if I start feeling bad I will go in. They wanted to give me ERCP #6 the next morning after #5 since we went to the ER with pain. A transplant doc was on call that night and I was there until 1:00 AM, but we talked some reason into them when the blood work came in.My pain

is more frequent, the writing is on the wall, but I want to put it off as long as possible (within reason of course). in MinnesotaPSC 2006-- Ian Cribb P.Eng.

[Guest guest]

Is that the israeli equivelant to TylenolSent via BlackBerry by AT&TDate: Sun, 23 Nov 2008 17:02:15 +0200To: < >Subject: RE: Re:Multiple ERCP's?? JoAnne JoAnne, My hepatologist told me not to take Advil (ibuprofen) because of its adverse effects to the liver. There have been some discussions about this before on this forum without a clear conclusion, but I prefer to take paracetamol to avoid any problems. Regards, Chaim Boermeester, Israel From: [mailto: ] On Behalf Of JoAnne WSent: Sunday, November 23, 2008 16:04To: Subject: Re: Re:Multiple ERCP's?? JoAnne Thanks , It helps to hear that I am not the only one feeling these symptoms; the doctors are always questioning me. They have not diagnosed me with UC although I have all the symptoms, they are saying it is acid and they think it going down instead of up sometimes. We are starting with Prilosec for two weeks them stop. I get Advil 200 mg over the counter for pain and if the diarrhea gets worse I get to take Imodium. I think I need to find someone that is more knowledgeable in PSC, but the problem is I have an HMO and my hands are tied. So I am going to take your advise and pressed on and see if they will elevate my case. It is hard when your lab look good and mine do! I am in southern California right in-between Riverside and San Diego near Temecula. Thanks for your advise! JoAnne Wisdom PSC 2007, Riverside CA ear Temecula. I have been getting ERCP's every 6 months and this was supposed to be my 6th in August. I made the point to the Doc that since the last two ERCP's didn't turn up any sludge or stones could we just roll the dice for a while? He made me wait until they received my blood results, but let me go without it. I am having ULQ pain from time to time, but other than that I feel fine. Don't get in a rut and just go along with the every so often plan if your situation doesn't require it. It will cut down the medical bills and the ERCP is less than pleasant. So until anything changes in my bloodwork, I am rolling the dice. Of course if I start feeling bad I will go in. They wanted to give me ERCP #6 the next morning after #5 since we went to the ER with pain. A transplant doc was on call that night and I was there until 1:00 AM, but we talked some reason into them when the blood work came in. My pain is more frequent, the writing is on the wall, but I want to put it off as long as possible (within reason of course). in Minnesota PSC 2006 -- Ian Cribb P.Eng.

[Guest guest]

Is that the israeli equivelant to TylenolSent via BlackBerry by AT&TDate: Sun, 23 Nov 2008 17:02:15 +0200To: < >Subject: RE: Re:Multiple ERCP's?? JoAnne JoAnne, My hepatologist told me not to take Advil (ibuprofen) because of its adverse effects to the liver. There have been some discussions about this before on this forum without a clear conclusion, but I prefer to take paracetamol to avoid any problems. Regards, Chaim Boermeester, Israel From: [mailto: ] On Behalf Of JoAnne WSent: Sunday, November 23, 2008 16:04To: Subject: Re: Re:Multiple ERCP's?? JoAnne Thanks , It helps to hear that I am not the only one feeling these symptoms; the doctors are always questioning me. They have not diagnosed me with UC although I have all the symptoms, they are saying it is acid and they think it going down instead of up sometimes. We are starting with Prilosec for two weeks them stop. I get Advil 200 mg over the counter for pain and if the diarrhea gets worse I get to take Imodium. I think I need to find someone that is more knowledgeable in PSC, but the problem is I have an HMO and my hands are tied. So I am going to take your advise and pressed on and see if they will elevate my case. It is hard when your lab look good and mine do! I am in southern California right in-between Riverside and San Diego near Temecula. Thanks for your advise! JoAnne Wisdom PSC 2007, Riverside CA ear Temecula. I have been getting ERCP's every 6 months and this was supposed to be my 6th in August. I made the point to the Doc that since the last two ERCP's didn't turn up any sludge or stones could we just roll the dice for a while? He made me wait until they received my blood results, but let me go without it. I am having ULQ pain from time to time, but other than that I feel fine. Don't get in a rut and just go along with the every so often plan if your situation doesn't require it. It will cut down the medical bills and the ERCP is less than pleasant. So until anything changes in my bloodwork, I am rolling the dice. Of course if I start feeling bad I will go in. They wanted to give me ERCP #6 the next morning after #5 since we went to the ER with pain. A transplant doc was on call that night and I was there until 1:00 AM, but we talked some reason into them when the blood work came in. My pain is more frequent, the writing is on the wall, but I want to put it off as long as possible (within reason of course). in Minnesota PSC 2006 -- Ian Cribb P.Eng.