Re: ot; colon removal & PSC

[Guest guest]

I had my colon removed and J pouch made in 2000. I have to say that I got a post op infection that nearly killed me (50 lb weight loss, 105 fever, weeks in the hospital, air ambulance ride back to Mayo). I also have had trouble with chronic pouchitis (UC in the pouch). Would I do it again. Absolutely, although I know about others that are equally happy about an eternal bag.Wish you the best.Subject: ot; colon removal & PSCTo: Date: Sunday, February 1, 2009, 5:13 PM

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 J pouch made in 2000. I have to say that I got a post op infection that nearly killed me (50 lb weight loss, 105 fever, weeks in the hospital, air ambulance ride back to Mayo). I also have had trouble with chronic pouchitis (UC in the pouch). Would I do it again. Absolutely, although I know about others that are equally happy about an eternal bag.Wish you the best.Subject: ot; colon removal & PSCTo: Date: Sunday, February 1, 2009, 5:13 PM

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]

We are dealing with the same issue right now. The only alternative

that we have come up with, and it may end up not being an alternative

at all, is helminthic therapy. So far we haven't found a doctor who

would be willing to support us and you have to have that if you have

autoimmune liver disease. It is also very expensive.

In our case, the PSCer is 4 years old and she has Crohn's, not UC.

This is a difficult time for us - we don't want to make this kind of

decision for a 4 year old.

I would be interested to know if there is any literature available

about the success of Crohn's patients having their colons removed and

espeically literature about Crohn's patients and PSC having an

ileostomy.

Good luck with your decision.

mom to Pearl, PSC/AIH/Crohn's

[Guest guest]

We are dealing with the same issue right now. The only alternative

that we have come up with, and it may end up not being an alternative

at all, is helminthic therapy. So far we haven't found a doctor who

would be willing to support us and you have to have that if you have

autoimmune liver disease. It is also very expensive.

In our case, the PSCer is 4 years old and she has Crohn's, not UC.

This is a difficult time for us - we don't want to make this kind of

decision for a 4 year old.

I would be interested to know if there is any literature available

about the success of Crohn's patients having their colons removed and

espeically literature about Crohn's patients and PSC having an

ileostomy.

Good luck with your decision.

mom to Pearl, PSC/AIH/Crohn's

[Guest guest]

We are dealing with the same issue right now. The only alternative

that we have come up with, and it may end up not being an alternative

at all, is helminthic therapy. So far we haven't found a doctor who

would be willing to support us and you have to have that if you have

autoimmune liver disease. It is also very expensive.

In our case, the PSCer is 4 years old and she has Crohn's, not UC.

This is a difficult time for us - we don't want to make this kind of

decision for a 4 year old.

I would be interested to know if there is any literature available

about the success of Crohn's patients having their colons removed and

espeically literature about Crohn's patients and PSC having an

ileostomy.

Good luck with your decision.

mom to Pearl, PSC/AIH/Crohn's

[Guest guest]

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 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]

Hi my name is . I too have a j/pouch. Since 98' . I have chronic pouchitis. I was recently diagnosed with PSC. I have not gotten a hang of what I should be eating?? Any ideas. I know what not to eat for PSC. But in terms of digestion for a j/pouch too. What do you think is safe?? I love fruit and veggies ,organic is OK. Yet i do not think my pouch likes it. My stools are still loose etc. What meds are you on? My docs are still trying to find what works best for me. I know I seem to be rambling on. I am glad you are doing well. I want to do a half Marathon in June. In Hawaii. My goal is to feel well by then! I mean asap to start to train. I need to get on track! Thanks for listing!

Sending love , laughter, good energy!

Namaste',

Subject: Re: ot; colon removal & PSCTo: Date: Monday, February 2, 2009, 9:58 AM

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]

Hi my name is . I too have a j/pouch. Since 98' . I have chronic pouchitis. I was recently diagnosed with PSC. I have not gotten a hang of what I should be eating?? Any ideas. I know what not to eat for PSC. But in terms of digestion for a j/pouch too. What do you think is safe?? I love fruit and veggies ,organic is OK. Yet i do not think my pouch likes it. My stools are still loose etc. What meds are you on? My docs are still trying to find what works best for me. I know I seem to be rambling on. I am glad you are doing well. I want to do a half Marathon in June. In Hawaii. My goal is to feel well by then! I mean asap to start to train. I need to get on track! Thanks for listing!

Sending love , laughter, good energy!

Namaste',

Subject: Re: ot; colon removal & PSCTo: Date: Monday, February 2, 2009, 9:58 AM

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]

Hi ,

Sorry can't help with the diet, but WOW the Hawaii half marathon, my

Dad did the full marathon when he was 60, the heat was a bit of a

challenge, (New Zealand is in the grips of winter at that time), but he

and a group of 'oldies' loved it.

Do keep us up to date on how you are going

Best wishes from the bottom of the world in New Zealand.

>

> Hi my name is . I too have a j/pouch. Since 98' . I have chronic

pouchitis. I was recently diagnosed with PSC. I have not gotten a hang

of what I should be eating?? Any ideas. I know what not to eat for PSC.

But in terms of digestion for a j/pouch too.

[Guest guest]

Hi ,

Sorry can't help with the diet, but WOW the Hawaii half marathon, my

Dad did the full marathon when he was 60, the heat was a bit of a

challenge, (New Zealand is in the grips of winter at that time), but he

and a group of 'oldies' loved it.

Do keep us up to date on how you are going

Best wishes from the bottom of the world in New Zealand.

>

> Hi my name is . I too have a j/pouch. Since 98' . I have chronic

pouchitis. I was recently diagnosed with PSC. I have not gotten a hang

of what I should be eating?? Any ideas. I know what not to eat for PSC.

But in terms of digestion for a j/pouch too.

[Guest guest]

Hi ,

Sorry can't help with the diet, but WOW the Hawaii half marathon, my

Dad did the full marathon when he was 60, the heat was a bit of a

challenge, (New Zealand is in the grips of winter at that time), but he

and a group of 'oldies' loved it.

Do keep us up to date on how you are going

Best wishes from the bottom of the world in New Zealand.

>

> Hi my name is . I too have a j/pouch. Since 98' . I have chronic

pouchitis. I was recently diagnosed with PSC. I have not gotten a hang

of what I should be eating?? Any ideas. I know what not to eat for PSC.

But in terms of digestion for a j/pouch too.

[Guest guest]

Hi ,My cousin in Sweden who has Crohn's received an ileostomy in 1982, and she's doing very well. She does not have PSC or AIH though. I have a history of UC, J-pouch, PSC, AIH, chronic pouchitis (currently treated with Cipro), and adrenal insufficiency. I suffer from severe fatigue and am now on disability.Marie

To: From: paulandjenniferc@...Date: Sun, 1 Feb 2009 19:37:45 +0000Subject: Re: ot; colon removal & PSC

We are dealing with the same issue right now. The only alternative

that we have come up with, and it may end up not being an alternative

at all, is helminthic therapy. So far we haven't found a doctor who

would be willing to support us and you have to have that if you have

autoimmune liver disease. It is also very expensive.

In our case, the PSCer is 4 years old and she has Crohn's, not UC.

This is a difficult time for us - we don't want to make this kind of

decision for a 4 year old.

I would be interested to know if there is any literature available

about the success of Crohn's patients having their colons removed and

espeically literature about Crohn's patients and PSC having an

ileostomy.

Good luck with your decision.

mom to Pearl, PSC/AIH/Crohn's

Hotmail® goes where you go. On a PC, on the Web, on your phone. See how.

[Guest guest]

Hi ,My cousin in Sweden who has Crohn's received an ileostomy in 1982, and she's doing very well. She does not have PSC or AIH though. I have a history of UC, J-pouch, PSC, AIH, chronic pouchitis (currently treated with Cipro), and adrenal insufficiency. I suffer from severe fatigue and am now on disability.Marie

To: From: paulandjenniferc@...Date: Sun, 1 Feb 2009 19:37:45 +0000Subject: Re: ot; colon removal & PSC

We are dealing with the same issue right now. The only alternative

that we have come up with, and it may end up not being an alternative

at all, is helminthic therapy. So far we haven't found a doctor who

would be willing to support us and you have to have that if you have

autoimmune liver disease. It is also very expensive.

In our case, the PSCer is 4 years old and she has Crohn's, not UC.

This is a difficult time for us - we don't want to make this kind of

decision for a 4 year old.

I would be interested to know if there is any literature available

about the success of Crohn's patients having their colons removed and

espeically literature about Crohn's patients and PSC having an

ileostomy.

Good luck with your decision.

mom to Pearl, PSC/AIH/Crohn's

Hotmail® goes where you go. On a PC, on the Web, on your phone. See how.

[Guest guest]

Hi ,My cousin in Sweden who has Crohn's received an ileostomy in 1982, and she's doing very well. She does not have PSC or AIH though. I have a history of UC, J-pouch, PSC, AIH, chronic pouchitis (currently treated with Cipro), and adrenal insufficiency. I suffer from severe fatigue and am now on disability.Marie

To: From: paulandjenniferc@...Date: Sun, 1 Feb 2009 19:37:45 +0000Subject: Re: ot; colon removal & PSC

We are dealing with the same issue right now. The only alternative

that we have come up with, and it may end up not being an alternative

at all, is helminthic therapy. So far we haven't found a doctor who

would be willing to support us and you have to have that if you have

autoimmune liver disease. It is also very expensive.

In our case, the PSCer is 4 years old and she has Crohn's, not UC.

This is a difficult time for us - we don't want to make this kind of

decision for a 4 year old.

I would be interested to know if there is any literature available

about the success of Crohn's patients having their colons removed and

espeically literature about Crohn's patients and PSC having an

ileostomy.

Good luck with your decision.

mom to Pearl, PSC/AIH/Crohn's

Hotmail® goes where you go. On a PC, on the Web, on your phone. See how.

[Guest guest]

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? >

[Guest guest]

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? >

[Guest guest]

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? >

[Guest guest]

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.

[Guest guest]

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.

[Guest guest]

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@...Date: 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.

[Guest guest]

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@...Date: 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.

[Guest guest]

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.

[Guest guest]

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.

[Guest guest]

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@...Date: 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.