Re: ot; colon removal & PSC

[Guest guest]

To my knowledge the J-pouch won't compromise the transplant.Marie

To: From: serbrinamv@...Date: Tue, 3 Feb 2009 00:42:27 +0000Subject: Re: Re: ot; colon removal & PSC

I really think that the colon removal will be the best thing for me. The only medicine that I am able to tolerate for my UC is predisone and we all know how wonderful that is. I've tried 6mp but it causes a dramatic increase in my bilirubin. My GI suggested we split the dosage so we may give it another go. I'm just worried that having the surgery will compromise my transplant. Have the Dr.s said anything to you about that? Thanks for your help. SerbrinaSent via BlackBerry by AT & TFrom: "jeffmn54" Date: Mon, 02 Feb 2009 17:58:11 -0000To: < >Subject: Re: ot; colon removal PSC I was diagnosed with UC in 1995, had my Colon removed in 2003 and a J Pouch created. I should have listened to my Doctors and had the procedure back in 1997. At the time of my Colon Removal I was diagnosed with PSC which has now progressed and I am going through Transplant Evaluation at the U of MN. Would i have the Colon Removed again - in a heart beat. Other than yearly bouts with chronic pouchitis which is controled with Meds I have lead a normal life. I am able to do all the things i did before including Exercise, Travel and working on restoring my toy. Good Luck - Any Questions - Just ask. Jeff > > I was diagnosed with UC in 2001 and PSC in 2005. I have inflamation in my entire colon and > my GI and Hepatologist both recommend colon removal. Has anyone had this done before or > after transplant and any thought? >

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[Guest guest]

Another great support group for J-pouches is the j-pouch.org

website. I am also a member there and have found it really informational and

supportive.

Rick

From:

[mailto: ] On Behalf Of serbrinamv@...

Sent: Monday, February 02, 2009 7:55 PM

To:

Subject: Re: ot; colon removal & PSC

Marie

I'll have to look into that support group. Where did you have the surgery at

and how has the J-pouch affected things with your liver.

Serbrina

Sent via BlackBerry by AT & T

[Guest guest]

Another great support group for J-pouches is the j-pouch.org

website. I am also a member there and have found it really informational and

supportive.

Rick

From:

[mailto: ] On Behalf Of serbrinamv@...

Sent: Monday, February 02, 2009 7:55 PM

To:

Subject: Re: ot; colon removal & PSC

Marie

I'll have to look into that support group. Where did you have the surgery at

and how has the J-pouch affected things with your liver.

Serbrina

Sent via BlackBerry by AT & T

[Guest guest]

I had the surgery at Kaiser Sunset with Dr. Abbas in 10/2005 and 1/2006.The biggest problem I have is dehydration. I think it may be made worse by the liver problems. Otherwise the j-pouch hasn't affected the liver. But dehydration is a huge problem. It's very hard to stay properly hydrated, especially if you have pouchitis and a lot of watery stools. I've been to the ER many times now due to dehydration, and I've been admitted quite a few times also.Marie

To: From: serbrinamv@...Date: Tue, 3 Feb 2009 00:54:33 +0000Subject: Re: ot; colon removal & PSC

MarieI'll have to look into that support group. Where did you have the surgery at and how has the J-pouch affected things with your liver.SerbrinaSent via BlackBerry by AT & TFrom: Marie Nilsson Date: Mon, 2 Feb 2009 16:56:12 -0800To: < >Subject: RE: ot; colon removal PSC Serbrina,Yes, I'm in the LA area. If you are too then I suggest you try to make it to the J-pouch support group. I'm pretty sure it meets this Saturday at UCLA at the Reagan Hospital, in the basement. An e-mail will go out probably very late on Thursday or Friday about the meeting.As to why I like the J-pouch over the ileostomy: the j-pouch doesn't require all the paraphenalia of the ileostomy including the bag, the things needed to stick the bag to your stoma (adhesive tapes, etc.). You don't need to make sure you are always carrying the stuff needed with you (extra bags in case of leaks). When the bag leaks at night it is really a mess, although it's always a mess if you have a stool leak at night. With the ileostomy, you can have a stool leak during the day, which doesn't happen for me with the J-pouch.Marie To: From: serbrinamv (AT) sbcglobal (DOT) netDate: Tue, 3 Feb 2009 00:44:46 +0000Subject: Re: ot; colon removal & PSC Are you in the L.A. area too? Why do you think the J pouch is better? Thanks for the tips.SerbrinaSent via BlackBerry by AT & TFrom: Marie Nilsson Date: Mon, 2 Feb 2009 16:44:50 -0800To: < >Subject: RE: ot; colon removal PSC I have a history of UC and a j-pouch (3 years since the takedown surgery), with chronic pouchitis. It is a challenge to have a j-pouch, especially if you end up with chronic pouchitis. In fact, there are support groups for people with J-pouches, and the LA group meets this Saturday at UCLA. Pouchitis can be treated with antibiotics. I've heard that if you stay away from ALL sugars (except some fruits), then you can avoid pouchitis. However, if you have PSC, you are more likely to get pouchitis (this is an inflammation of the pouch; my symptoms are watery stools, nocternal diarrhea & leaks necessitating wearing Depends at night, gas, etc.).Check out J-pouch.org for more information on what it is like to have one.If you have inflammation through out your colon you probably need to get rid of your colon. You have a few options, such as a j-pouch or an ileostomy. I think the j-pouch is MUCH better than the ileostomy. However, this is a huge decision that you have to make and it needs to be your decision. So learn as much as you can in advance to make the best decision for you. Best of luck to you.Marie To: From: serbrinamv (AT) sbcglobal (DOT) netDate: Sun, 1 Feb 2009 17:13:05 +0000Subject: ot; colon removal & PSC I was diagnosed with UC in 2001 and PSC in 2005. I have inflamation in my entire colon and my GI and Hepatologist both recommend colon removal. Has anyone had this done before or after transplant and any thought? Windows Live™ Hotmail®:…more than just e-mail. Check it out. Windows Live™: E-mail. Chat. Share. Get more ways to connect. Check it out.

Windows Live™ Hotmail®…more than just e-mail. See how it works.

[Guest guest]

I had the surgery at Kaiser Sunset with Dr. Abbas in 10/2005 and 1/2006.The biggest problem I have is dehydration. I think it may be made worse by the liver problems. Otherwise the j-pouch hasn't affected the liver. But dehydration is a huge problem. It's very hard to stay properly hydrated, especially if you have pouchitis and a lot of watery stools. I've been to the ER many times now due to dehydration, and I've been admitted quite a few times also.Marie

To: From: serbrinamv@...Date: Tue, 3 Feb 2009 00:54:33 +0000Subject: Re: ot; colon removal & PSC

MarieI'll have to look into that support group. Where did you have the surgery at and how has the J-pouch affected things with your liver.SerbrinaSent via BlackBerry by AT & TFrom: Marie Nilsson Date: Mon, 2 Feb 2009 16:56:12 -0800To: < >Subject: RE: ot; colon removal PSC Serbrina,Yes, I'm in the LA area. If you are too then I suggest you try to make it to the J-pouch support group. I'm pretty sure it meets this Saturday at UCLA at the Reagan Hospital, in the basement. An e-mail will go out probably very late on Thursday or Friday about the meeting.As to why I like the J-pouch over the ileostomy: the j-pouch doesn't require all the paraphenalia of the ileostomy including the bag, the things needed to stick the bag to your stoma (adhesive tapes, etc.). You don't need to make sure you are always carrying the stuff needed with you (extra bags in case of leaks). When the bag leaks at night it is really a mess, although it's always a mess if you have a stool leak at night. With the ileostomy, you can have a stool leak during the day, which doesn't happen for me with the J-pouch.Marie To: From: serbrinamv (AT) sbcglobal (DOT) netDate: Tue, 3 Feb 2009 00:44:46 +0000Subject: Re: ot; colon removal & PSC Are you in the L.A. area too? Why do you think the J pouch is better? Thanks for the tips.SerbrinaSent via BlackBerry by AT & TFrom: Marie Nilsson Date: Mon, 2 Feb 2009 16:44:50 -0800To: < >Subject: RE: ot; colon removal PSC I have a history of UC and a j-pouch (3 years since the takedown surgery), with chronic pouchitis. It is a challenge to have a j-pouch, especially if you end up with chronic pouchitis. In fact, there are support groups for people with J-pouches, and the LA group meets this Saturday at UCLA. Pouchitis can be treated with antibiotics. I've heard that if you stay away from ALL sugars (except some fruits), then you can avoid pouchitis. However, if you have PSC, you are more likely to get pouchitis (this is an inflammation of the pouch; my symptoms are watery stools, nocternal diarrhea & leaks necessitating wearing Depends at night, gas, etc.).Check out J-pouch.org for more information on what it is like to have one.If you have inflammation through out your colon you probably need to get rid of your colon. You have a few options, such as a j-pouch or an ileostomy. I think the j-pouch is MUCH better than the ileostomy. However, this is a huge decision that you have to make and it needs to be your decision. So learn as much as you can in advance to make the best decision for you. Best of luck to you.Marie To: From: serbrinamv (AT) sbcglobal (DOT) netDate: Sun, 1 Feb 2009 17:13:05 +0000Subject: ot; colon removal & PSC I was diagnosed with UC in 2001 and PSC in 2005. I have inflamation in my entire colon and my GI and Hepatologist both recommend colon removal. Has anyone had this done before or after transplant and any thought? Windows Live™ Hotmail®:…more than just e-mail. Check it out. Windows Live™: E-mail. Chat. Share. Get more ways to connect. Check it out.

Windows Live™ Hotmail®…more than just e-mail. See how it works.

[Guest guest]

I had the surgery at Kaiser Sunset with Dr. Abbas in 10/2005 and 1/2006.The biggest problem I have is dehydration. I think it may be made worse by the liver problems. Otherwise the j-pouch hasn't affected the liver. But dehydration is a huge problem. It's very hard to stay properly hydrated, especially if you have pouchitis and a lot of watery stools. I've been to the ER many times now due to dehydration, and I've been admitted quite a few times also.Marie

To: From: serbrinamv@...Date: Tue, 3 Feb 2009 00:54:33 +0000Subject: Re: ot; colon removal & PSC

MarieI'll have to look into that support group. Where did you have the surgery at and how has the J-pouch affected things with your liver.SerbrinaSent via BlackBerry by AT & TFrom: Marie Nilsson Date: Mon, 2 Feb 2009 16:56:12 -0800To: < >Subject: RE: ot; colon removal PSC Serbrina,Yes, I'm in the LA area. If you are too then I suggest you try to make it to the J-pouch support group. I'm pretty sure it meets this Saturday at UCLA at the Reagan Hospital, in the basement. An e-mail will go out probably very late on Thursday or Friday about the meeting.As to why I like the J-pouch over the ileostomy: the j-pouch doesn't require all the paraphenalia of the ileostomy including the bag, the things needed to stick the bag to your stoma (adhesive tapes, etc.). You don't need to make sure you are always carrying the stuff needed with you (extra bags in case of leaks). When the bag leaks at night it is really a mess, although it's always a mess if you have a stool leak at night. With the ileostomy, you can have a stool leak during the day, which doesn't happen for me with the J-pouch.Marie To: From: serbrinamv (AT) sbcglobal (DOT) netDate: Tue, 3 Feb 2009 00:44:46 +0000Subject: Re: ot; colon removal & PSC Are you in the L.A. area too? Why do you think the J pouch is better? Thanks for the tips.SerbrinaSent via BlackBerry by AT & TFrom: Marie Nilsson Date: Mon, 2 Feb 2009 16:44:50 -0800To: < >Subject: RE: ot; colon removal PSC I have a history of UC and a j-pouch (3 years since the takedown surgery), with chronic pouchitis. It is a challenge to have a j-pouch, especially if you end up with chronic pouchitis. In fact, there are support groups for people with J-pouches, and the LA group meets this Saturday at UCLA. Pouchitis can be treated with antibiotics. I've heard that if you stay away from ALL sugars (except some fruits), then you can avoid pouchitis. However, if you have PSC, you are more likely to get pouchitis (this is an inflammation of the pouch; my symptoms are watery stools, nocternal diarrhea & leaks necessitating wearing Depends at night, gas, etc.).Check out J-pouch.org for more information on what it is like to have one.If you have inflammation through out your colon you probably need to get rid of your colon. You have a few options, such as a j-pouch or an ileostomy. I think the j-pouch is MUCH better than the ileostomy. However, this is a huge decision that you have to make and it needs to be your decision. So learn as much as you can in advance to make the best decision for you. Best of luck to you.Marie To: From: serbrinamv (AT) sbcglobal (DOT) netDate: Sun, 1 Feb 2009 17:13:05 +0000Subject: ot; colon removal & PSC I was diagnosed with UC in 2001 and PSC in 2005. I have inflamation in my entire colon and my GI and Hepatologist both recommend colon removal. Has anyone had this done before or after transplant and any thought? Windows Live™ Hotmail®:…more than just e-mail. Check it out. Windows Live™: E-mail. Chat. Share. Get more ways to connect. Check it out.

Windows Live™ Hotmail®…more than just e-mail. See how it works.

[Guest guest]

MarieI'm sorry to hear about that. Thanks for the info, its really helping guide my decision toward what to do. Best of luck to you.SerbrinaSent via BlackBerry by AT&TFrom: Marie Nilsson Date: Tue, 3 Feb 2009 10:52:27 -0800To: < >Subject: RE: ot; colon removal PSC I had the surgery at Kaiser Sunset with Dr. Abbas in 10/2005 and 1/2006.The biggest problem I have is dehydration. I think it may be made worse by the liver problems. Otherwise the j-pouch hasn't affected the liver. But dehydration is a huge problem. It's very hard to stay properly hydrated, especially if you have pouchitis and a lot of watery stools. I've been to the ER many times now due to dehydration, and I've been admitted quite a few times also.Marie To: From: serbrinamv (AT) sbcglobal (DOT) netDate: Tue, 3 Feb 2009 00:54:33 +0000Subject: Re: ot; colon removal & PSC MarieI'll have to look into that support group. Where did you have the surgery at and how has the J-pouch affected things with your liver.SerbrinaSent via BlackBerry by AT & TFrom: Marie Nilsson Date: Mon, 2 Feb 2009 16:56:12 -0800To: < >Subject: RE: ot; colon removal PSC Serbrina,Yes, I'm in the LA area. If you are too then I suggest you try to make it to the J-pouch support group. I'm pretty sure it meets this Saturday at UCLA at the Reagan Hospital, in the basement. An e-mail will go out probably very late on Thursday or Friday about the meeting.As to why I like the J-pouch over the ileostomy: the j-pouch doesn't require all the paraphenalia of the ileostomy including the bag, the things needed to stick the bag to your stoma (adhesive tapes, etc.). You don't need to make sure you are always carrying the stuff needed with you (extra bags in case of leaks). When the bag leaks at night it is really a mess, although it's always a mess if you have a stool leak at night. With the ileostomy, you can have a stool leak during the day, which doesn't happen for me with the J-pouch.Marie To: From: serbrinamv (AT) sbcglobal (DOT) netDate: Tue, 3 Feb 2009 00:44:46 +0000Subject: Re: ot; colon removal & PSC Are you in the L.A. area too? Why do you think the J pouch is better? Thanks for the tips.SerbrinaSent via BlackBerry by AT & TFrom: Marie Nilsson Date: Mon, 2 Feb 2009 16:44:50 -0800To: < >Subject: RE: ot; colon removal PSC I have a history of UC and a j-pouch (3 years since the takedown surgery), with chronic pouchitis. It is a challenge to have a j-pouch, especially if you end up with chronic pouchitis. In fact, there are support groups for people with J-pouches, and the LA group meets this Saturday at UCLA. Pouchitis can be treated with antibiotics. I've heard that if you stay away from ALL sugars (except some fruits), then you can avoid pouchitis. However, if you have PSC, you are more likely to get pouchitis (this is an inflammation of the pouch; my symptoms are watery stools, nocternal diarrhea & leaks necessitating wearing Depends at night, gas, etc.).Check out J-pouch.org for more information on what it is like to have one.If you have inflammation through out your colon you probably need to get rid of your colon. You have a few options, such as a j-pouch or an ileostomy. I think the j-pouch is MUCH better than the ileostomy. However, this is a huge decision that you have to make and it needs to be your decision. So learn as much as you can in advance to make the best decision for you. Best of luck to you.Marie To: From: serbrinamv (AT) sbcglobal (DOT) netDate: Sun, 1 Feb 2009 17:13:05 +0000Subject: ot; colon removal & PSC I was diagnosed with UC in 2001 and PSC in 2005. I have inflamation in my entire colon and my GI and Hepatologist both recommend colon removal. Has anyone had this done before or after transplant and any thought? Windows Live™ Hotmail®:…more than just e-mail. Check it out. Windows Live™: E-mail. Chat. Share. Get more ways to connect. Check it out. Windows Live™ Hotmail®…more than just e-mail. See how it works.

[Guest guest]

MarieI'm sorry to hear about that. Thanks for the info, its really helping guide my decision toward what to do. Best of luck to you.SerbrinaSent via BlackBerry by AT&TFrom: Marie Nilsson Date: Tue, 3 Feb 2009 10:52:27 -0800To: < >Subject: RE: ot; colon removal PSC I had the surgery at Kaiser Sunset with Dr. Abbas in 10/2005 and 1/2006.The biggest problem I have is dehydration. I think it may be made worse by the liver problems. Otherwise the j-pouch hasn't affected the liver. But dehydration is a huge problem. It's very hard to stay properly hydrated, especially if you have pouchitis and a lot of watery stools. I've been to the ER many times now due to dehydration, and I've been admitted quite a few times also.Marie To: From: serbrinamv (AT) sbcglobal (DOT) netDate: Tue, 3 Feb 2009 00:54:33 +0000Subject: Re: ot; colon removal & PSC MarieI'll have to look into that support group. Where did you have the surgery at and how has the J-pouch affected things with your liver.SerbrinaSent via BlackBerry by AT & TFrom: Marie Nilsson Date: Mon, 2 Feb 2009 16:56:12 -0800To: < >Subject: RE: ot; colon removal PSC Serbrina,Yes, I'm in the LA area. If you are too then I suggest you try to make it to the J-pouch support group. I'm pretty sure it meets this Saturday at UCLA at the Reagan Hospital, in the basement. An e-mail will go out probably very late on Thursday or Friday about the meeting.As to why I like the J-pouch over the ileostomy: the j-pouch doesn't require all the paraphenalia of the ileostomy including the bag, the things needed to stick the bag to your stoma (adhesive tapes, etc.). You don't need to make sure you are always carrying the stuff needed with you (extra bags in case of leaks). When the bag leaks at night it is really a mess, although it's always a mess if you have a stool leak at night. With the ileostomy, you can have a stool leak during the day, which doesn't happen for me with the J-pouch.Marie To: From: serbrinamv (AT) sbcglobal (DOT) netDate: Tue, 3 Feb 2009 00:44:46 +0000Subject: Re: ot; colon removal & PSC Are you in the L.A. area too? Why do you think the J pouch is better? Thanks for the tips.SerbrinaSent via BlackBerry by AT & TFrom: Marie Nilsson Date: Mon, 2 Feb 2009 16:44:50 -0800To: < >Subject: RE: ot; colon removal PSC I have a history of UC and a j-pouch (3 years since the takedown surgery), with chronic pouchitis. It is a challenge to have a j-pouch, especially if you end up with chronic pouchitis. In fact, there are support groups for people with J-pouches, and the LA group meets this Saturday at UCLA. Pouchitis can be treated with antibiotics. I've heard that if you stay away from ALL sugars (except some fruits), then you can avoid pouchitis. However, if you have PSC, you are more likely to get pouchitis (this is an inflammation of the pouch; my symptoms are watery stools, nocternal diarrhea & leaks necessitating wearing Depends at night, gas, etc.).Check out J-pouch.org for more information on what it is like to have one.If you have inflammation through out your colon you probably need to get rid of your colon. You have a few options, such as a j-pouch or an ileostomy. I think the j-pouch is MUCH better than the ileostomy. However, this is a huge decision that you have to make and it needs to be your decision. So learn as much as you can in advance to make the best decision for you. Best of luck to you.Marie To: From: serbrinamv (AT) sbcglobal (DOT) netDate: Sun, 1 Feb 2009 17:13:05 +0000Subject: ot; colon removal & PSC I was diagnosed with UC in 2001 and PSC in 2005. I have inflamation in my entire colon and my GI and Hepatologist both recommend colon removal. Has anyone had this done before or after transplant and any thought? Windows Live™ Hotmail®:…more than just e-mail. Check it out. Windows Live™: E-mail. Chat. Share. Get more ways to connect. Check it out. Windows Live™ Hotmail®…more than just e-mail. See how it works.

[Guest guest]

MarieI'm sorry to hear about that. Thanks for the info, its really helping guide my decision toward what to do. Best of luck to you.SerbrinaSent via BlackBerry by AT&TFrom: Marie Nilsson Date: Tue, 3 Feb 2009 10:52:27 -0800To: < >Subject: RE: ot; colon removal PSC I had the surgery at Kaiser Sunset with Dr. Abbas in 10/2005 and 1/2006.The biggest problem I have is dehydration. I think it may be made worse by the liver problems. Otherwise the j-pouch hasn't affected the liver. But dehydration is a huge problem. It's very hard to stay properly hydrated, especially if you have pouchitis and a lot of watery stools. I've been to the ER many times now due to dehydration, and I've been admitted quite a few times also.Marie To: From: serbrinamv (AT) sbcglobal (DOT) netDate: Tue, 3 Feb 2009 00:54:33 +0000Subject: Re: ot; colon removal & PSC MarieI'll have to look into that support group. Where did you have the surgery at and how has the J-pouch affected things with your liver.SerbrinaSent via BlackBerry by AT & TFrom: Marie Nilsson Date: Mon, 2 Feb 2009 16:56:12 -0800To: < >Subject: RE: ot; colon removal PSC Serbrina,Yes, I'm in the LA area. If you are too then I suggest you try to make it to the J-pouch support group. I'm pretty sure it meets this Saturday at UCLA at the Reagan Hospital, in the basement. An e-mail will go out probably very late on Thursday or Friday about the meeting.As to why I like the J-pouch over the ileostomy: the j-pouch doesn't require all the paraphenalia of the ileostomy including the bag, the things needed to stick the bag to your stoma (adhesive tapes, etc.). You don't need to make sure you are always carrying the stuff needed with you (extra bags in case of leaks). When the bag leaks at night it is really a mess, although it's always a mess if you have a stool leak at night. With the ileostomy, you can have a stool leak during the day, which doesn't happen for me with the J-pouch.Marie To: From: serbrinamv (AT) sbcglobal (DOT) netDate: Tue, 3 Feb 2009 00:44:46 +0000Subject: Re: ot; colon removal & PSC Are you in the L.A. area too? Why do you think the J pouch is better? Thanks for the tips.SerbrinaSent via BlackBerry by AT & TFrom: Marie Nilsson Date: Mon, 2 Feb 2009 16:44:50 -0800To: < >Subject: RE: ot; colon removal PSC I have a history of UC and a j-pouch (3 years since the takedown surgery), with chronic pouchitis. It is a challenge to have a j-pouch, especially if you end up with chronic pouchitis. In fact, there are support groups for people with J-pouches, and the LA group meets this Saturday at UCLA. Pouchitis can be treated with antibiotics. I've heard that if you stay away from ALL sugars (except some fruits), then you can avoid pouchitis. However, if you have PSC, you are more likely to get pouchitis (this is an inflammation of the pouch; my symptoms are watery stools, nocternal diarrhea & leaks necessitating wearing Depends at night, gas, etc.).Check out J-pouch.org for more information on what it is like to have one.If you have inflammation through out your colon you probably need to get rid of your colon. You have a few options, such as a j-pouch or an ileostomy. I think the j-pouch is MUCH better than the ileostomy. However, this is a huge decision that you have to make and it needs to be your decision. So learn as much as you can in advance to make the best decision for you. Best of luck to you.Marie To: From: serbrinamv (AT) sbcglobal (DOT) netDate: Sun, 1 Feb 2009 17:13:05 +0000Subject: ot; colon removal & PSC I was diagnosed with UC in 2001 and PSC in 2005. I have inflamation in my entire colon and my GI and Hepatologist both recommend colon removal. Has anyone had this done before or after transplant and any thought? Windows Live™ Hotmail®:…more than just e-mail. Check it out. Windows Live™: E-mail. Chat. Share. Get more ways to connect. Check it out. Windows Live™ Hotmail®…more than just e-mail. See how it works.

[Guest guest]

I had a huge problem with dehydration after my jpouch

surgery. I had it done at Cleveland Clinic and my

surgeon said, " go to the store and buy 2 or 3 good

sized water bottles (yeah, bad for the environment),

and carry them with you everywhere.

It was a habit I got used to...now a water bottle is

at my side all the time. While traveling in the car,

carry it to work, fill it up at breaks, bring it back

home, and keep it by me while watching tv, and then

off to bed..and if I wake during the night, I take a

drink.

Cindy Baudoux-Northrup

[Guest guest]

I had a huge problem with dehydration after my jpouch

surgery. I had it done at Cleveland Clinic and my

surgeon said, " go to the store and buy 2 or 3 good

sized water bottles (yeah, bad for the environment),

and carry them with you everywhere.

It was a habit I got used to...now a water bottle is

at my side all the time. While traveling in the car,

carry it to work, fill it up at breaks, bring it back

home, and keep it by me while watching tv, and then

off to bed..and if I wake during the night, I take a

drink.

Cindy Baudoux-Northrup

[Guest guest]

I had a huge problem with dehydration after my jpouch

surgery. I had it done at Cleveland Clinic and my

surgeon said, " go to the store and buy 2 or 3 good

sized water bottles (yeah, bad for the environment),

and carry them with you everywhere.

It was a habit I got used to...now a water bottle is

at my side all the time. While traveling in the car,

carry it to work, fill it up at breaks, bring it back

home, and keep it by me while watching tv, and then

off to bed..and if I wake during the night, I take a

drink.

Cindy Baudoux-Northrup

[Guest guest]

I had my colon removed and have an ileostomy. My surgeon said that I could not have the J-Pouch until after liver transplant. I didn't think I would be able to handle it, but actually it is better than before. I have not had leaks during the day but have at night if I don't get up.

Subject: Re: Re: ot; colon removal & PSCTo: Date: Monday, February 2, 2009, 7:42 PM

I really think that the colon removal will be the best thing for me. The only medicine that I am able to tolerate for my UC is predisone and we all know how wonderful that is. I've tried 6mp but it causes a dramatic increase in my bilirubin. My GI suggested we split the dosage so we may give it another go. I'm just worried that having the surgery will compromise my transplant. Have the Dr.s said anything to you about that? Thanks for your help. Serbrina

Sent via BlackBerry by AT & T

From: "jeffmn54" Date: Mon, 02 Feb 2009 17:58:11 -0000To: <@ yahoogroups. com>Subject: Re: ot; colon removal PSC

I was diagnosed with UC in 1995, had my Colon removed in 2003 and a J Pouch created. I should have listened to my Doctors and had the procedure back in 1997. At the time of my Colon Removal I was diagnosed with PSC which has now progressed and I am going through Transplant Evaluation at the U of MN. Would i have the Colon Removed again - in a heart beat. Other than yearly bouts with chronic pouchitis which is controled with Meds I have lead a normal life. I am able to do all the things i did before including Exercise, Travel and working on restoring my toy. Good Luck - Any Questions - Just ask.Jeff>> I was diagnosed with UC in 2001 and PSC in 2005. I have inflamation in my entire colon and > my GI and

Hepatologist both recommend colon removal. Has anyone had this done before or > after transplant and any thought?>

[Guest guest]

I had my colon removed and have an ileostomy. My surgeon said that I could not have the J-Pouch until after liver transplant. I didn't think I would be able to handle it, but actually it is better than before. I have not had leaks during the day but have at night if I don't get up.

Subject: Re: Re: ot; colon removal & PSCTo: Date: Monday, February 2, 2009, 7:42 PM

I really think that the colon removal will be the best thing for me. The only medicine that I am able to tolerate for my UC is predisone and we all know how wonderful that is. I've tried 6mp but it causes a dramatic increase in my bilirubin. My GI suggested we split the dosage so we may give it another go. I'm just worried that having the surgery will compromise my transplant. Have the Dr.s said anything to you about that? Thanks for your help. Serbrina

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From: "jeffmn54" Date: Mon, 02 Feb 2009 17:58:11 -0000To: <@ yahoogroups. com>Subject: Re: ot; colon removal PSC

I was diagnosed with UC in 1995, had my Colon removed in 2003 and a J Pouch created. I should have listened to my Doctors and had the procedure back in 1997. At the time of my Colon Removal I was diagnosed with PSC which has now progressed and I am going through Transplant Evaluation at the U of MN. Would i have the Colon Removed again - in a heart beat. Other than yearly bouts with chronic pouchitis which is controled with Meds I have lead a normal life. I am able to do all the things i did before including Exercise, Travel and working on restoring my toy. Good Luck - Any Questions - Just ask.Jeff>> I was diagnosed with UC in 2001 and PSC in 2005. I have inflamation in my entire colon and > my GI and

Hepatologist both recommend colon removal. Has anyone had this done before or > after transplant and any thought?>

[Guest guest]

Is dehydration a major problem with an ileostomy and stoma? Does the

PSC complicate it as well?

mom to Pearl, PSC/AIH/Crohn's

[Guest guest]

Is dehydration a major problem with an ileostomy and stoma? Does the

PSC complicate it as well?

mom to Pearl, PSC/AIH/Crohn's

[Guest guest]

Is dehydration a major problem with an ileostomy and stoma? Does the

PSC complicate it as well?

mom to Pearl, PSC/AIH/Crohn's

[Guest guest]

That's what they had told my DW Lori. That the colectomy would occur

first, then they would wait until the liver transplant occurred until

the J-Pouch would be complete. And, it would take two additional

surgeries after the transplant. I was a disappointed with that

decision, but Lori ended up having her transplant two days after the

colectomy. And, there was enough of her rectum left to reconnect

without a J-pouch.

>

> I had my colon removed and have an ileostomy. My surgeon said that I

could not have the J-Pouch until after liver transplant. I didn't

think I would be able to handle it, but actually it is better than

before. I have not had leaks during the day but have at night if I

don't get up.

>

[Guest guest]

I have not had any dehydration problems with my ileostomy and I am not a big drinker. I drink decaf/green tea iced tea.

Subject: Re: ot; colon removal & PSCTo: Date: Wednesday, February 4, 2009, 8:41 AM

Is dehydration a major problem with an ileostomy and stoma? Does the PSC complicate it as well?mom to Pearl, PSC/AIH/Crohn' s

[Guest guest]

I have not had any dehydration problems with my ileostomy and I am not a big drinker. I drink decaf/green tea iced tea.

Subject: Re: ot; colon removal & PSCTo: Date: Wednesday, February 4, 2009, 8:41 AM

Is dehydration a major problem with an ileostomy and stoma? Does the PSC complicate it as well?mom to Pearl, PSC/AIH/Crohn' s