Re: info request. ileostomy take down..j-pouch

October 12, 2006

I have the jpouch. The first 6 weeks were getting

used to my new body function.

After that, everything fell into place. I learned to

control the movements and did really well. I go about

2-3 times aday.

The transition is not bad at all, if you have other

questions feel free to ask.

Baudoux-Northrup

__________________________________________________

October 12, 2006

Dear -- you've been through it all!!! There is an excellent website you should visit. http://www.j-pouch.org It is run extremely well as is this site. It has a daily wealth of current information posting as well as years' worth of search history. My husband has had a j-pouch since 1982. He has always had, and continues to have, nighttime leakage. He is up 2 to 3 times a night. Also a common complaint among those with j-pouches is "pouchitis," an inflammation in the pouch.

You certainly have a lot of information to weigh. If your ileostomy is serving you well, take your time in deciding.

One more thing. There is also the koch pouch, which I know nothing about, but is discussed at the site.

Regards, .

Diane C

husband, Brad - 1982, UC/j-pouch; 2005 PSC; 2006 CC

>> Good afternoon all... This is my first post after a very long hiatus.> A brief history...> I'm and I'm 31yo.> Diagnosed with PSC & UC November 2001> Acute Liver Failure November 2005> Liver Transplant January 31st 2006 (UCSF)> During wait for Liver... Kidney Failure (both)> Also in Jan... Total Colectomy due to UC> Currently living healthy with dialysis 3x/week for 3 hours and being > worked up for the kidney transplant list.> > I am in the process of researching the pros and cons of having the j-> pouch surgery done. Currently I have the ileostomy pouch attached to > me. I was wondering how many other have experience with this surgery.> I have been warned by the dr about having issues post suregery > once "re-connected" with frequency, control, and leakage at night. > Ig any others have had this procedure done... what has your > experience been like?> > Thanks>

October 12, 2006

Dear -- you've been through it all!!! There is an excellent website you should visit. http://www.j-pouch.org It is run extremely well as is this site. It has a daily wealth of current information posting as well as years' worth of search history. My husband has had a j-pouch since 1982. He has always had, and continues to have, nighttime leakage. He is up 2 to 3 times a night. Also a common complaint among those with j-pouches is "pouchitis," an inflammation in the pouch.

You certainly have a lot of information to weigh. If your ileostomy is serving you well, take your time in deciding.

One more thing. There is also the koch pouch, which I know nothing about, but is discussed at the site.

Regards, .

Diane C

husband, Brad - 1982, UC/j-pouch; 2005 PSC; 2006 CC

>> Good afternoon all... This is my first post after a very long hiatus.> A brief history...> I'm and I'm 31yo.> Diagnosed with PSC & UC November 2001> Acute Liver Failure November 2005> Liver Transplant January 31st 2006 (UCSF)> During wait for Liver... Kidney Failure (both)> Also in Jan... Total Colectomy due to UC> Currently living healthy with dialysis 3x/week for 3 hours and being > worked up for the kidney transplant list.> > I am in the process of researching the pros and cons of having the j-> pouch surgery done. Currently I have the ileostomy pouch attached to > me. I was wondering how many other have experience with this surgery.> I have been warned by the dr about having issues post suregery > once "re-connected" with frequency, control, and leakage at night. > Ig any others have had this procedure done... what has your > experience been like?> > Thanks>

October 12, 2006

Dear -- you've been through it all!!! There is an excellent website you should visit. http://www.j-pouch.org It is run extremely well as is this site. It has a daily wealth of current information posting as well as years' worth of search history. My husband has had a j-pouch since 1982. He has always had, and continues to have, nighttime leakage. He is up 2 to 3 times a night. Also a common complaint among those with j-pouches is "pouchitis," an inflammation in the pouch.

You certainly have a lot of information to weigh. If your ileostomy is serving you well, take your time in deciding.

One more thing. There is also the koch pouch, which I know nothing about, but is discussed at the site.

Regards, .

Diane C

husband, Brad - 1982, UC/j-pouch; 2005 PSC; 2006 CC

>> Good afternoon all... This is my first post after a very long hiatus.> A brief history...> I'm and I'm 31yo.> Diagnosed with PSC & UC November 2001> Acute Liver Failure November 2005> Liver Transplant January 31st 2006 (UCSF)> During wait for Liver... Kidney Failure (both)> Also in Jan... Total Colectomy due to UC> Currently living healthy with dialysis 3x/week for 3 hours and being > worked up for the kidney transplant list.> > I am in the process of researching the pros and cons of having the j-> pouch surgery done. Currently I have the ileostomy pouch attached to > me. I was wondering how many other have experience with this surgery.> I have been warned by the dr about having issues post suregery > once "re-connected" with frequency, control, and leakage at night. > Ig any others have had this procedure done... what has your > experience been like?> > Thanks>

October 12, 2006

Hi ,

I've only posted twice to this group, but thought I could comment on J pouches. I had a two part Colectomy in Jan of 99. I had a temporary bag for about 6 weeks. I hated it! It leaked and my skin was always raw. I couldn't wait to have the second surgery. The second surgery (the take down?) they connected my small intestines to the J pouch they had created during the first surgery. I had some serious stricture (scar tissue builds up and you can't pass stool) problems for about 6 months after the second surgery and dehydration issues, when they finally got the strictures under control, I still had to get IVs every few months or more often in the summer months. That went on for a couple of years. I now drink lots of Power Aid and eat pickles (I had sodium deficiency with the dehydration) and never have any caffeine and that keeps my going most of the time. I also have a tool I use to open up strictures when they occur. It's not pleasant (actually painful), but I use it at most a couple times a year. I only leak at night if I have pouchitis, eat a big meal before bed or have soda or anything with sugar in it right before bed. Some teas (non caffeinated) make me leak too. I go to the bathroom probably 8 times a day. After I eat, my small intestines can be very noisy. I would choose the J pouch with out a second thought. I'm just stressing out about possibly needing a liver transplant sometime in the unknown future.

October 12, 2006

Hi ,

I've only posted twice to this group, but thought I could comment on J pouches. I had a two part Colectomy in Jan of 99. I had a temporary bag for about 6 weeks. I hated it! It leaked and my skin was always raw. I couldn't wait to have the second surgery. The second surgery (the take down?) they connected my small intestines to the J pouch they had created during the first surgery. I had some serious stricture (scar tissue builds up and you can't pass stool) problems for about 6 months after the second surgery and dehydration issues, when they finally got the strictures under control, I still had to get IVs every few months or more often in the summer months. That went on for a couple of years. I now drink lots of Power Aid and eat pickles (I had sodium deficiency with the dehydration) and never have any caffeine and that keeps my going most of the time. I also have a tool I use to open up strictures when they occur. It's not pleasant (actually painful), but I use it at most a couple times a year. I only leak at night if I have pouchitis, eat a big meal before bed or have soda or anything with sugar in it right before bed. Some teas (non caffeinated) make me leak too. I go to the bathroom probably 8 times a day. After I eat, my small intestines can be very noisy. I would choose the J pouch with out a second thought. I'm just stressing out about possibly needing a liver transplant sometime in the unknown future.

October 12, 2006

Hi ,

I've only posted twice to this group, but thought I could comment on J pouches. I had a two part Colectomy in Jan of 99. I had a temporary bag for about 6 weeks. I hated it! It leaked and my skin was always raw. I couldn't wait to have the second surgery. The second surgery (the take down?) they connected my small intestines to the J pouch they had created during the first surgery. I had some serious stricture (scar tissue builds up and you can't pass stool) problems for about 6 months after the second surgery and dehydration issues, when they finally got the strictures under control, I still had to get IVs every few months or more often in the summer months. That went on for a couple of years. I now drink lots of Power Aid and eat pickles (I had sodium deficiency with the dehydration) and never have any caffeine and that keeps my going most of the time. I also have a tool I use to open up strictures when they occur. It's not pleasant (actually painful), but I use it at most a couple times a year. I only leak at night if I have pouchitis, eat a big meal before bed or have soda or anything with sugar in it right before bed. Some teas (non caffeinated) make me leak too. I go to the bathroom probably 8 times a day. After I eat, my small intestines can be very noisy. I would choose the J pouch with out a second thought. I'm just stressing out about possibly needing a liver transplant sometime in the unknown future.

October 12, 2006

There is also the koch pouch, which I know nothing about, but is discussed at the site.>>> I have an updated version of the koch pouch which is called a BCIR (Barnett continent intestinal reservoir). It was done in 1994 after I had lived with a standard ileostomy since 1972. The BCIR hasn't caused me problems although I have had bouts of pouchitis which is controlled with flagyl. A small flexible catheter is used to empty the pouch which I do between 4-7 times a day. I do get up once in the night to empty the pouch but others who have it say they don't get up at night. Guess it depends on how finicky a person is. I do not have leakage although mucus does come through which is a good thing. I know when my bile ducts are clogged because there is no mucus. If you need any more info please feel free to ask. Oh, yes - the surgery is done

in several places in the US including a center in CA, MO and FL. Here is a website that has some information http://www.bcirostomy.com/history_t.html Blessings, Barby - KS UC - 1965, ileostomy - 1972, BCIR (continent pouch) 1994, PSC - 1995 married 27 years , 5 sons, 2 daughers in law, 1 granddaugher born 6/06 and 2 golden retrievers

October 12, 2006

There is also the koch pouch, which I know nothing about, but is discussed at the site.>>> I have an updated version of the koch pouch which is called a BCIR (Barnett continent intestinal reservoir). It was done in 1994 after I had lived with a standard ileostomy since 1972. The BCIR hasn't caused me problems although I have had bouts of pouchitis which is controlled with flagyl. A small flexible catheter is used to empty the pouch which I do between 4-7 times a day. I do get up once in the night to empty the pouch but others who have it say they don't get up at night. Guess it depends on how finicky a person is. I do not have leakage although mucus does come through which is a good thing. I know when my bile ducts are clogged because there is no mucus. If you need any more info please feel free to ask. Oh, yes - the surgery is done

in several places in the US including a center in CA, MO and FL. Here is a website that has some information http://www.bcirostomy.com/history_t.html Blessings, Barby - KS UC - 1965, ileostomy - 1972, BCIR (continent pouch) 1994, PSC - 1995 married 27 years , 5 sons, 2 daughers in law, 1 granddaugher born 6/06 and 2 golden retrievers

October 12, 2006

There is also the koch pouch, which I know nothing about, but is discussed at the site.>>> I have an updated version of the koch pouch which is called a BCIR (Barnett continent intestinal reservoir). It was done in 1994 after I had lived with a standard ileostomy since 1972. The BCIR hasn't caused me problems although I have had bouts of pouchitis which is controlled with flagyl. A small flexible catheter is used to empty the pouch which I do between 4-7 times a day. I do get up once in the night to empty the pouch but others who have it say they don't get up at night. Guess it depends on how finicky a person is. I do not have leakage although mucus does come through which is a good thing. I know when my bile ducts are clogged because there is no mucus. If you need any more info please feel free to ask. Oh, yes - the surgery is done

in several places in the US including a center in CA, MO and FL. Here is a website that has some information http://www.bcirostomy.com/history_t.html Blessings, Barby - KS UC - 1965, ileostomy - 1972, BCIR (continent pouch) 1994, PSC - 1995 married 27 years , 5 sons, 2 daughers in law, 1 granddaugher born 6/06 and 2 golden retrievers

October 12, 2006

Hi ,

I am so sorry to hear of all the difficulties you have had to deal with in

your young life. You are very courageous!

My son had his j-pouch in 1999. His UC was uncontrollable and his colon was

already dysplastic. The first surgery to remove the colon and create the

pouch was very successful. He had an ileostomy for three months while

everything healed. His second surgery to connect the small intestine to the

pouch was also successful. He did remarkably well, with only a few problems

with dehydration initially, and an episode of adrenal insufficiency when he

was weaned too quickly from the steroids. He had 7 years of excellent

health with only occasional episodes of pouchitis controlled with

antibiotics.

Learn all you can, only you can decide what is best for you. Good luck to

you!

Chris

mother of Joe (32), UC 1987, j-pouch 1999, PSC, acute pancreatitis 03/06

October 12, 2006