Re: Looking for someone else with PSC due Crohn's to chat with.

[Guest guest]

Dear ,If at all possible, try to come to the PSC conference May 2-4 in ville Fl.It is just what you need right now. I'm sure there are still some good flights available.Tomorrow is the last day for the reduced pricing.We have had others from Canada attend. This is Partners 4th conference.Check the web site below for details:www.pscpartners.orgLeeOn Apr 3, 2008, at 5:56 PM, sljoutlook76 wrote:I've had Crohn's of small, now spread to large, bowel for nearly 30 years. Two yrs ago diagnosed with PSC. No one else on PEI, Canada has this disease. I go to Toronto annually for follow up but friends, relatives, medical community here have no idea about the disease or how it effects me. I would like to chat with anyone who also has this disease to hear how it affects them and their lives. I think it would be a great support to me to hear how others deal with this. 

[Guest guest]

:

I have both Crohn's and PSC. I was diagnosed with PSC in 2001. Crohn's came

later. I am in Texas and while there are lots of larger medical facilities

around, there really isn't that much known here either. I work at a small rural

hospital and I am their first experience with PSC. I have been lucky in that

PSC has not really affected my life at this point. Crohn's on the other hand is

with me constantly. I would love to chat and help in any way that I can. My

personal e-mail is lindel6454@....

>>> sljoutlook76 sljoutlook@...> 04/03/08 4:56 PM >>>

I've had Crohn's of small, now spread to large, bowel for nearly 30

years. Two yrs ago diagnosed with PSC. No one else on PEI, Canada has

this disease. I go to Toronto annually for follow up but friends,

relatives, medical community here have no idea about the disease or how

it effects me. I would like to chat with anyone who also has this

disease to hear how it affects them and their lives. I think it would

be a great support to me to hear how others deal with this.

Thanks..

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[Guest guest]

> I've had Crohn's of small, now spread to large, bowel for nearly 30

years. Two yrs ago diagnosed with PSC. No one else on PEI, Canada has

this disease. I go to Toronto annually for follow up but friends,

relatives, medical community here have no idea about the disease or

how it effects me. I would like to chat with anyone who also has this

disease to hear how it affects them and their lives. I think it would

be a great support to me to hear how others deal with this.

Hi , My 13 year old son has Crohn's and PSC, both diagnosed

last year. You've come to the right place to find support from

others who have both Crohn's and PSC. There are many people who post

on this board who have both, as well as many others here who have UC

and PSC or who have PSC without either (and many family members &/or

caregivers who post here, too). You can learn a lot here about how

others are affected and will find support and a lot of information

and links to the latest research. I'm sure you'll find some (or

several) here to chat with outside the board as well. There's also

the annual conference coming up in early May in Florida (and there's

one in Oxford during the summer every year, too --right Ivor?). If

you could make either of those, I think you'd be glad you went. We

went last year, to the U.S. one that was in Denver then, and it was

absolutely worth the trip --soooo worth it. I'm very sorry you have

PSC and have been dealing with Crohn's for so many years, but I am

glad you found this board.

Since you are interested in how others lives are affected, I will

tell you that PSC is not as prominent in my son's life, at this

point, as much as his IBD is. My son is early stage with his PSC and

has LFT's done every 3 months now and an annual MRCP (coming up on

Monday, actually). He has liver pain if he's eaten a meal that's too

fatty (particularly if butter has been used in cooking the food), so

we avoid fatty foods, of course (tried to beforehand anyway, but it's

more important to now). Sometimes, lately, he says his liver hurts

without any link to a fatty meal and I'm not sure what that means (we

see his local doctor next Thursday), but he is not having any spikes

in his LFT's or any other PSC-related symptoms or problems (including

no itching, thank heavens, at this point). We avoid high fructose

corn syrup completely -were told that it is 'tough on the liver' by

our son's GI dietician. PSC-wise, our son is doing pretty good and

has only monitoring by his doctor, dietary changes, and one of his

meds (a probiotic that he takes for his IBD) that may or may not be

helping to keep his LFT's in or near normal over the past year.

That's how he is affected by his PSC at this point. His local GI

does have other patients ('some', not a lot) with both PSC and IBD

(mostly with UC) and his out-of-town Hepatologists have many peds

patients with both, too. He is 14&1/4 months past diagnosis -the

first year, first 6 months really, were harder, but largely because

it was new to us, not because he was symptomatic. I don't know if it

helps much to know his experience, but there it is. Crohn's has been

his troublesome one of the two.

You are so very welcome here, but again I am sorry to hear that you

have been diagnosed with PSC on top of your Crohn's. I hope you find

what you are looking for here.

Meghan, mom to 13yo Wyatt--psc, ibd, fap, ai hives, gerd

[Guest guest]

> I've had Crohn's of small, now spread to large, bowel for nearly 30

years. Two yrs ago diagnosed with PSC. No one else on PEI, Canada has

this disease. I go to Toronto annually for follow up but friends,

relatives, medical community here have no idea about the disease or

how it effects me. I would like to chat with anyone who also has this

disease to hear how it affects them and their lives. I think it would

be a great support to me to hear how others deal with this.

Hi , My 13 year old son has Crohn's and PSC, both diagnosed

last year. You've come to the right place to find support from

others who have both Crohn's and PSC. There are many people who post

on this board who have both, as well as many others here who have UC

and PSC or who have PSC without either (and many family members &/or

caregivers who post here, too). You can learn a lot here about how

others are affected and will find support and a lot of information

and links to the latest research. I'm sure you'll find some (or

several) here to chat with outside the board as well. There's also

the annual conference coming up in early May in Florida (and there's

one in Oxford during the summer every year, too --right Ivor?). If

you could make either of those, I think you'd be glad you went. We

went last year, to the U.S. one that was in Denver then, and it was

absolutely worth the trip --soooo worth it. I'm very sorry you have

PSC and have been dealing with Crohn's for so many years, but I am

glad you found this board.

Since you are interested in how others lives are affected, I will

tell you that PSC is not as prominent in my son's life, at this

point, as much as his IBD is. My son is early stage with his PSC and

has LFT's done every 3 months now and an annual MRCP (coming up on

Monday, actually). He has liver pain if he's eaten a meal that's too

fatty (particularly if butter has been used in cooking the food), so

we avoid fatty foods, of course (tried to beforehand anyway, but it's

more important to now). Sometimes, lately, he says his liver hurts

without any link to a fatty meal and I'm not sure what that means (we

see his local doctor next Thursday), but he is not having any spikes

in his LFT's or any other PSC-related symptoms or problems (including

no itching, thank heavens, at this point). We avoid high fructose

corn syrup completely -were told that it is 'tough on the liver' by

our son's GI dietician. PSC-wise, our son is doing pretty good and

has only monitoring by his doctor, dietary changes, and one of his

meds (a probiotic that he takes for his IBD) that may or may not be

helping to keep his LFT's in or near normal over the past year.

That's how he is affected by his PSC at this point. His local GI

does have other patients ('some', not a lot) with both PSC and IBD

(mostly with UC) and his out-of-town Hepatologists have many peds

patients with both, too. He is 14&1/4 months past diagnosis -the

first year, first 6 months really, were harder, but largely because

it was new to us, not because he was symptomatic. I don't know if it

helps much to know his experience, but there it is. Crohn's has been

his troublesome one of the two.

You are so very welcome here, but again I am sorry to hear that you

have been diagnosed with PSC on top of your Crohn's. I hope you find

what you are looking for here.

Meghan, mom to 13yo Wyatt--psc, ibd, fap, ai hives, gerd

[Guest guest]

> I've had Crohn's of small, now spread to large, bowel for nearly 30

years. Two yrs ago diagnosed with PSC. No one else on PEI, Canada has

this disease. I go to Toronto annually for follow up but friends,

relatives, medical community here have no idea about the disease or

how it effects me. I would like to chat with anyone who also has this

disease to hear how it affects them and their lives. I think it would

be a great support to me to hear how others deal with this.

Hi , My 13 year old son has Crohn's and PSC, both diagnosed

last year. You've come to the right place to find support from

others who have both Crohn's and PSC. There are many people who post

on this board who have both, as well as many others here who have UC

and PSC or who have PSC without either (and many family members &/or

caregivers who post here, too). You can learn a lot here about how

others are affected and will find support and a lot of information

and links to the latest research. I'm sure you'll find some (or

several) here to chat with outside the board as well. There's also

the annual conference coming up in early May in Florida (and there's

one in Oxford during the summer every year, too --right Ivor?). If

you could make either of those, I think you'd be glad you went. We

went last year, to the U.S. one that was in Denver then, and it was

absolutely worth the trip --soooo worth it. I'm very sorry you have

PSC and have been dealing with Crohn's for so many years, but I am

glad you found this board.

Since you are interested in how others lives are affected, I will

tell you that PSC is not as prominent in my son's life, at this

point, as much as his IBD is. My son is early stage with his PSC and

has LFT's done every 3 months now and an annual MRCP (coming up on

Monday, actually). He has liver pain if he's eaten a meal that's too

fatty (particularly if butter has been used in cooking the food), so

we avoid fatty foods, of course (tried to beforehand anyway, but it's

more important to now). Sometimes, lately, he says his liver hurts

without any link to a fatty meal and I'm not sure what that means (we

see his local doctor next Thursday), but he is not having any spikes

in his LFT's or any other PSC-related symptoms or problems (including

no itching, thank heavens, at this point). We avoid high fructose

corn syrup completely -were told that it is 'tough on the liver' by

our son's GI dietician. PSC-wise, our son is doing pretty good and

has only monitoring by his doctor, dietary changes, and one of his

meds (a probiotic that he takes for his IBD) that may or may not be

helping to keep his LFT's in or near normal over the past year.

That's how he is affected by his PSC at this point. His local GI

does have other patients ('some', not a lot) with both PSC and IBD

(mostly with UC) and his out-of-town Hepatologists have many peds

patients with both, too. He is 14&1/4 months past diagnosis -the

first year, first 6 months really, were harder, but largely because

it was new to us, not because he was symptomatic. I don't know if it

helps much to know his experience, but there it is. Crohn's has been

his troublesome one of the two.

You are so very welcome here, but again I am sorry to hear that you

have been diagnosed with PSC on top of your Crohn's. I hope you find

what you are looking for here.

Meghan, mom to 13yo Wyatt--psc, ibd, fap, ai hives, gerd

[Guest guest]

Hi , My husband has Crohn's and was diagnosed with PSC two

years ago as well. He has just recently started to have problems

related to the PSC and we are working with his doctors to figure it

out. His crohn's has lately been the least of his problems, although

it is what started everything going wrong for him. He also has an

auto immune arthritis which is what causes him the most serious pain.

I think the PSC was probably the hardest diagnosis to deal with since

the research can sometimes be bleak. But I am glad that I also found

this group because there is a lot of support and others going through

the same thing. If you would like to contact me personally you may

email me at megasam2@....