Re: Is pain from PSC or not?

[Guest guest]

I am sorry to hear that you are in pain. I am wondering if you still

have your Gall Bladder? This sounds very similar to what I

experienced before they took mine out.

Dawn

>

> I was diagnosed with PSC and ulcerative colits in 1993, but other

> than need for a common bile duct dilitation and stent in 1998, I

> have remained stable. Statistically, my doctor thought I would be

> in liver failure four years ago. I seem to be defying the odds, but

> this summer I started with upper abdominal pain, mostly right side,

> with a couple of episodes of mild fevers and headaches. This was

> reminescent of my common bile blockage in 1998.

>

> I had an ERCP with a dilitation of a hepatic duct that was slightly

> narrowed. I also had an upper GI endoscopy, MRI and colonoscopy.

> There was no evidence that my PSC had worsened. Ulcertative

colitis

> is stable. All lab tests are normal. The only thing that showed up

> was gastritis.

>

> The problem is that I have had no relief from the upper GI pain.

It

> worsens when I eat and extends across the entire upper abdomen. It

> also worsens as the day progresses. There is a feeling of bloating

> and swelling. Feels like a fist is under the right ribs pushing up

> against the ribs and the diaphragm. On occasion I have some

> breathlessness...fair amount of fatigue. I can only eat small

> amounts. I have some stomach discomfort from reflux. My gallbaldder

> is gone.

>

> The only thing my doc can figure out is that the pain and symptoms

> come from PSC even though none of my tests point to that because he

> can't find anything else. I asked about whether I could be having

a

> reaction to my meds. I take Pentesa 2000 to 3000 mg a day, Urso 600

> mg a day (although I did take 1200 this past summer when the pain

> started until recently,) and Nexium 40 mg a day (have been on this

> for years.) He agreed that I should try stopping the Nexium to see

> if that helps.

>

> Are these symptoms from PSC?

> Carole

>

[Guest guest]

Have you been tested for other possible causes? My husband also has PSC, but was then diagnosed with Celiac's Disease(wheat/gluten allergy). He had similar symptoms, but with a diet change felt better. That might not be the cause, but there are numerous things that could be causing it. I just think it might be worth looking into.

Patti

To: Sent: Friday, November 14, 2008 10:15:55 PMSubject: Is pain from PSC or not?

I was diagnosed with PSC and ulcerative colits in 1993, but other than need for a common bile duct dilitation and stent in 1998, I have remained stable. Statistically, my doctor thought I would be in liver failure four years ago. I seem to be defying the odds, but this summer I started with upper abdominal pain, mostly right side, with a couple of episodes of mild fevers and headaches. This was reminescent of my common bile blockage in 1998. I had an ERCP with a dilitation of a hepatic duct that was slightly narrowed. I also had an upper GI endoscopy, MRI and colonoscopy. There was no evidence that my PSC had worsened. Ulcertative colitis is stable. All lab tests are normal. The only thing that showed up was gastritis. The problem is that I have had no relief from the upper GI pain. It worsens when I eat and extends across the entire upper abdomen. It also worsens as the day progresses.

There is a feeling of bloating and swelling. Feels like a fist is under the right ribs pushing up against the ribs and the diaphragm. On occasion I have some breathlessness. ..fair amount of fatigue. I can only eat small amounts. I have some stomach discomfort from reflux. My gallbaldder is gone.The only thing my doc can figure out is that the pain and symptoms come from PSC even though none of my tests point to that because he can't find anything else. I asked about whether I could be having a reaction to my meds. I take Pentesa 2000 to 3000 mg a day, Urso 600 mg a day (although I did take 1200 this past summer when the pain started until recently,) and Nexium 40 mg a day (have been on this for years.) He agreed that I should try stopping the Nexium to see if that helps. Are these symptoms from PSC?Carole

[Guest guest]

Although you no longer have a gallbladder, you can still get stones -

which may account for some symptoms. Your pain description sure sounds

like cholangitis (right upper quadrant pain, bloated feeling). I have

no experience with it, but an enlarge spleen could possibly account for

some of the symptoms. Are you drinking enough water? Dehydration can

exacerbate the symptoms.

Arne

carole.schauer wrote:

....Are these symptoms from PSC?

Carol

[Guest guest]

Hi Carole,I don't know if the pain is from PSC. I have similar pains, but probably not as bad as yours. Most of my recent problems have been GI related. I have a history of UC and now a j-pouch ileoanal anastomosis, with chronic prouchitis. My pains are sometimes shooting pains, mostly on my right side. But I do get the bloating also.Marie

To: From: carole.schauer@...Date: Sat, 15 Nov 2008 03:15:55 +0000Subject: Is pain from PSC or not?

I was diagnosed with PSC and ulcerative colits in 1993, but other

than need for a common bile duct dilitation and stent in 1998, I

have remained stable. Statistically, my doctor thought I would be

in liver failure four years ago. I seem to be defying the odds, but

this summer I started with upper abdominal pain, mostly right side,

with a couple of episodes of mild fevers and headaches. This was

reminescent of my common bile blockage in 1998.

I had an ERCP with a dilitation of a hepatic duct that was slightly

narrowed. I also had an upper GI endoscopy, MRI and colonoscopy.

There was no evidence that my PSC had worsened. Ulcertative colitis

is stable. All lab tests are normal. The only thing that showed up

was gastritis.

The problem is that I have had no relief from the upper GI pain. It

worsens when I eat and extends across the entire upper abdomen. It

also worsens as the day progresses. There is a feeling of bloating

and swelling. Feels like a fist is under the right ribs pushing up

against the ribs and the diaphragm. On occasion I have some

breathlessness...fair amount of fatigue. I can only eat small

amounts. I have some stomach discomfort from reflux. My gallbaldder

is gone.

The only thing my doc can figure out is that the pain and symptoms

come from PSC even though none of my tests point to that because he

can't find anything else. I asked about whether I could be having a

reaction to my meds. I take Pentesa 2000 to 3000 mg a day, Urso 600

mg a day (although I did take 1200 this past summer when the pain

started until recently,) and Nexium 40 mg a day (have been on this

for years.) He agreed that I should try stopping the Nexium to see

if that helps.

Are these symptoms from PSC?

Carole

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[Guest guest]

Hi Carole,I don't know if the pain is from PSC. I have similar pains, but probably not as bad as yours. Most of my recent problems have been GI related. I have a history of UC and now a j-pouch ileoanal anastomosis, with chronic prouchitis. My pains are sometimes shooting pains, mostly on my right side. But I do get the bloating also.Marie

To: From: carole.schauer@...Date: Sat, 15 Nov 2008 03:15:55 +0000Subject: Is pain from PSC or not?

I was diagnosed with PSC and ulcerative colits in 1993, but other

than need for a common bile duct dilitation and stent in 1998, I

have remained stable. Statistically, my doctor thought I would be

in liver failure four years ago. I seem to be defying the odds, but

this summer I started with upper abdominal pain, mostly right side,

with a couple of episodes of mild fevers and headaches. This was

reminescent of my common bile blockage in 1998.

I had an ERCP with a dilitation of a hepatic duct that was slightly

narrowed. I also had an upper GI endoscopy, MRI and colonoscopy.

There was no evidence that my PSC had worsened. Ulcertative colitis

is stable. All lab tests are normal. The only thing that showed up

was gastritis.

The problem is that I have had no relief from the upper GI pain. It

worsens when I eat and extends across the entire upper abdomen. It

also worsens as the day progresses. There is a feeling of bloating

and swelling. Feels like a fist is under the right ribs pushing up

against the ribs and the diaphragm. On occasion I have some

breathlessness...fair amount of fatigue. I can only eat small

amounts. I have some stomach discomfort from reflux. My gallbaldder

is gone.

The only thing my doc can figure out is that the pain and symptoms

come from PSC even though none of my tests point to that because he

can't find anything else. I asked about whether I could be having a

reaction to my meds. I take Pentesa 2000 to 3000 mg a day, Urso 600

mg a day (although I did take 1200 this past summer when the pain

started until recently,) and Nexium 40 mg a day (have been on this

for years.) He agreed that I should try stopping the Nexium to see

if that helps.

Are these symptoms from PSC?

Carole

Get 5 GB of storage with Windows Live Hotmail. Sign up today.

[Guest guest]

Hi Carole,I have recurrent bile duct infections and with the exception of the headaches I have all the symptoms you described including the same eating issues. I usually just try to stay hydrated and watch the fever. If it starts to go up I call the doctor and have to be put on antibiotics. I take pain meds when needed and eat small meals that are vegetarian and avoid fried foods. Hope you start feeling better.DarcySent from my Verizon Wireless BlackBerryDate: Sat, 15 Nov 2008 03:15:55 -0000To: < >Subject: Is pain from PSC or not? I was diagnosed with PSC and ulcerative colits in 1993, but other than need for a common bile duct dilitation and stent in 1998, I have remained stable. Statistically, my doctor thought I would be in liver failure four years ago. I seem to be defying the odds, but this summer I started with upper abdominal pain, mostly right side, with a couple of episodes of mild fevers and headaches. This was reminescent of my common bile blockage in 1998. I had an ERCP with a dilitation of a hepatic duct that was slightly narrowed. I also had an upper GI endoscopy, MRI and colonoscopy. There was no evidence that my PSC had worsened. Ulcertative colitis is stable. All lab tests are normal. The only thing that showed up was gastritis. The problem is that I have had no relief from the upper GI pain. It worsens when I eat and extends across the entire upper abdomen. It also worsens as the day progresses. There is a feeling of bloating and swelling. Feels like a fist is under the right ribs pushing up against the ribs and the diaphragm. On occasion I have some breathlessness...fair amount of fatigue. I can only eat small amounts. I have some stomach discomfort from reflux. My gallbaldder is gone. The only thing my doc can figure out is that the pain and symptoms come from PSC even though none of my tests point to that because he can't find anything else. I asked about whether I could be having a reaction to my meds. I take Pentesa 2000 to 3000 mg a day, Urso 600 mg a day (although I did take 1200 this past summer when the pain started until recently,) and Nexium 40 mg a day (have been on this for years.) He agreed that I should try stopping the Nexium to see if that helps. Are these symptoms from PSC? Carole

[Guest guest]

I have had a couple of cholangitis attacks that have put me in the

hospital and a couple that I treated at home with antibiotics. What

you describe does sounds like my attacks.

I have since figured out that when I start to feel the pain that I

have not drank eonough. And that I make sure to drink more fluid to

get my self hydrated better. And this seems to help. Plus I get on

antibiotics to get rid of any infection that gets started.

I usually don't seem to actually form stones, for me I make a sludge

in my duct that has blocked it the times I have been in the hospital.

And once I get better hydrated it seems that it starts to wash it

away.

Plus I have found that when I keep myself hydrated that I have less

problems, and actually seem to not get as tired. I have found that

keeping hydrated is about the most important thing for me to keep my

PSC under control

good luck with all,

Beth B

[Guest guest]

Interesting. I will take a look at what you suggested.

Carole

Subject: Re: Is pain from PSC or not?To: Date: Saturday, November 15, 2008, 4:18 PM

Have you been tested for other possible causes? My husband also has PSC, but was then diagnosed with Celiac's Disease(wheat/ gluten allergy). He had similar symptoms, but with a diet change felt better. That might not be the cause, but there are numerous things that could be causing it. I just think it might be worth looking into.

Patti

From: carole.schauer <carole.schauer@ yahoo.com>To: @ yahoogroups. comSent: Friday, November 14, 2008 10:15:55 PMSubject: Is pain from PSC or not?

I was diagnosed with PSC and ulcerative colits in 1993, but other than need for a common bile duct dilitation and stent in 1998, I have remained stable. Statistically, my doctor thought I would be in liver failure four years ago. I seem to be defying the odds, but this summer I started with upper abdominal pain, mostly right side, with a couple of episodes of mild fevers and headaches. This was reminescent of my common bile blockage in 1998. I had an ERCP with a dilitation of a hepatic duct that was slightly narrowed. I also had an upper GI endoscopy, MRI and colonoscopy. There was no evidence that my PSC had worsened. Ulcertative colitis is stable. All lab tests are normal. The only thing that showed up was gastritis. The problem is that I have had no relief from the upper GI pain. It worsens when I eat and extends across the entire upper abdomen. It also worsens as the day progresses.

There is a feeling of bloating and swelling. Feels like a fist is under the right ribs pushing up against the ribs and the diaphragm. On occasion I have some breathlessness. ..fair amount of fatigue. I can only eat small amounts. I have some stomach discomfort from reflux. My gallbaldder is gone.The only thing my doc can figure out is that the pain and symptoms come from PSC even though none of my tests point to that because he can't find anything else. I asked about whether I could be having a reaction to my meds. I take Pentesa 2000 to 3000 mg a day, Urso 600 mg a day (although I did take 1200 this past summer when the pain started until recently,) and Nexium 40 mg a day (have been on this for years.) He agreed that I should try stopping the Nexium to see if that helps. Are these symptoms from

PSC?Carole

[Guest guest]

Interesting. I will take a look at what you suggested.

Carole

Subject: Re: Is pain from PSC or not?To: Date: Saturday, November 15, 2008, 4:18 PM

Have you been tested for other possible causes? My husband also has PSC, but was then diagnosed with Celiac's Disease(wheat/ gluten allergy). He had similar symptoms, but with a diet change felt better. That might not be the cause, but there are numerous things that could be causing it. I just think it might be worth looking into.

Patti

From: carole.schauer <carole.schauer@ yahoo.com>To: @ yahoogroups. comSent: Friday, November 14, 2008 10:15:55 PMSubject: Is pain from PSC or not?

I was diagnosed with PSC and ulcerative colits in 1993, but other than need for a common bile duct dilitation and stent in 1998, I have remained stable. Statistically, my doctor thought I would be in liver failure four years ago. I seem to be defying the odds, but this summer I started with upper abdominal pain, mostly right side, with a couple of episodes of mild fevers and headaches. This was reminescent of my common bile blockage in 1998. I had an ERCP with a dilitation of a hepatic duct that was slightly narrowed. I also had an upper GI endoscopy, MRI and colonoscopy. There was no evidence that my PSC had worsened. Ulcertative colitis is stable. All lab tests are normal. The only thing that showed up was gastritis. The problem is that I have had no relief from the upper GI pain. It worsens when I eat and extends across the entire upper abdomen. It also worsens as the day progresses.

There is a feeling of bloating and swelling. Feels like a fist is under the right ribs pushing up against the ribs and the diaphragm. On occasion I have some breathlessness. ..fair amount of fatigue. I can only eat small amounts. I have some stomach discomfort from reflux. My gallbaldder is gone.The only thing my doc can figure out is that the pain and symptoms come from PSC even though none of my tests point to that because he can't find anything else. I asked about whether I could be having a reaction to my meds. I take Pentesa 2000 to 3000 mg a day, Urso 600 mg a day (although I did take 1200 this past summer when the pain started until recently,) and Nexium 40 mg a day (have been on this for years.) He agreed that I should try stopping the Nexium to see if that helps. Are these symptoms from

PSC?Carole