Comments for J-pouch Life http://www.jpouch.net Stories of Ostomates & J-pouchers from around the world Tue, 10 Nov 2009 17:07:27 -0700 http://wordpress.org/?v=2.8.4 hourly 1 Comment on About Jpouch dot net by sarah http://feedproxy.google.com/~r/commentsjpouchnet/~3/l_2sBc4tkxA/ sarah Tue, 10 Nov 2009 17:07:27 +0000 http://www.jpouch.net/?page_id=1742#comment-5666 Hi Mark & Megan, Thank you for this great site - I am a nursing student and I'm preparing for my first surgical rotation. Your story was very helpful in helping me understand how a patient would feel about their condition. Glad to hear all went well and you had a good hospital experience. Thanks again. Hi Mark & Megan,

Thank you for this great site – I am a nursing student and I’m preparing for my first surgical rotation. Your story was very helpful in helping me understand how a patient would feel about their condition. Glad to hear all went well and you had a good hospital experience. Thanks again.


]]> http://www.jpouch.net/about-jpouch-dot-net/#comment-5666 Comment on Potential Problems After Surgery by Mark http://feedproxy.google.com/~r/commentsjpouchnet/~3/0irNkZeFCIg/ Mark Mon, 09 Nov 2009 13:49:22 +0000 http://ucstory.wordpress.com/?p=186#comment-5663 What you are calling “frequent burning” is what we all call so blatantly “BUTT BURN.” There are a couple things I could suggest for you to consider (1) Learn more about fiber supplements because i was told in the hospital to use Benefiber ONLY when I had the ostomy and to use Metamucil when ONLY when I had the takedown. Apparently Metamucil will make you too thick when you have the ostomy and works better after you have the takedown. (2) As for the butt burn when you get your fiber regulated, you might also want to try slowing your system down by using something like immodium, that will cut down on some BM’s. and (3) You might want to try NOT WIPING but pressing to absorb the waste and then use a wet wipe to clean the waste residue. (4) There are a ton of cream options out there and you might want to try exploring other options, I go inbetween being a fan of Tucks cream or my ultimate favorite cortizone cream. (5) And after 10 years why your pouch is acting up to give you BB is a bit odd so you may want to contact your GI and let them know. (6) Has anthing in your diet changed lately? Are you on any new medicines? I know when I eat poorly my BB acts up. Also over at www.jpouch.org, they have a great forum for BB related concerns and you will get lots of feedback there to maybe help ease your concerns. If you go to their "Find" section and type in burning, or butt burn you'll find lots of pre-answered comments. What you are calling “frequent burning” is what we all call so blatantly “BUTT BURN.” There are a couple things I could suggest for you to consider (1) Learn more about fiber supplements because i was told in the hospital to use Benefiber ONLY when I had the ostomy and to use Metamucil when ONLY when I had the takedown. Apparently Metamucil will make you too thick when you have the ostomy and works better after you have the takedown. (2) As for the butt burn when you get your fiber regulated, you might also want to try slowing your system down by using something like immodium, that will cut down on some BM’s. and (3) You might want to try NOT WIPING but pressing to absorb the waste and then use a wet wipe to clean the waste residue. (4) There are a ton of cream options out there and you might want to try exploring other options, I go inbetween being a fan of Tucks cream or my ultimate favorite cortizone cream. (5) And after 10 years why your pouch is acting up to give you BB is a bit odd so you may want to contact your GI and let them know. (6) Has anthing in your diet changed lately? Are you on any new medicines? I know when I eat poorly my BB acts up. Also over at http://www.jpouch.org, they have a great forum for BB related concerns and you will get lots of feedback there to maybe help ease your concerns. If you go to their “Find” section and type in burning, or butt burn you’ll find lots of pre-answered comments.


]]> http://www.jpouch.net/2008/06/29/potential-problems-after-surgery/#comment-5663 Comment on Potential Problems After Surgery by daryl http://feedproxy.google.com/~r/commentsjpouchnet/~3/_Akr3pcr-vI/ daryl Mon, 09 Nov 2009 00:15:52 +0000 http://ucstory.wordpress.com/?p=186#comment-5662 is there anyone out there with a jpouch that is experiencing frequent burning, i have regular bouts of what seems like my bum is on fire, creams and more creaams only work for awhile, what could be causing this? i have had my jpouch for ten years and i can handle the regular trips to the bathroom but this burning is holding me back from enjoying life as i should, there is no warning, it just comes on, please if you have any suggestions or experiences i would be eternally grateful. cheers daryl is there anyone out there with a jpouch that is experiencing frequent burning, i have regular bouts of what seems like my bum is on fire, creams and more creaams only work for awhile, what could be causing this? i have had my jpouch for ten years and i can handle the regular trips to the bathroom but this burning is holding me back from enjoying life as i should, there is no warning, it just comes on, please if you have any suggestions or experiences i would be eternally grateful. cheers daryl


]]> http://www.jpouch.net/2008/06/29/potential-problems-after-surgery/#comment-5662 Comment on Livin’ Life with a J-pouch by Beatriz M http://feedproxy.google.com/~r/commentsjpouchnet/~3/QKEWm9AvAcg/ Beatriz M Wed, 04 Nov 2009 20:42:12 +0000 http://www.jpouch.net/?p=1442#comment-5655 Dude your personality f in Rocks' !!!! I luv it! I have an ileostomy and going for the second surgery in dec...you are so right about how things were before with UC...going out to public places and hoping to make to the stall...Now i look forward at everything and especially eating almost everything i love! I am cook and own a catering co so passion food its entirely my life!...your list sounds great and hope i can accomplish some of those. keep rockin' that positivetly around cuz negativety is a bore!... Dude your personality f in Rocks’ !!!! I luv it! I have an ileostomy and going for the second surgery in dec…you are so right about how things were before with UC…going out to public places and hoping to make to the stall…Now i look forward at everything and especially eating almost everything i love! I am cook and own a catering co so passion food its entirely my life!…your list sounds great and hope i can accomplish some of those. keep rockin’ that positivetly around cuz negativety is a bore!…


]]> http://www.jpouch.net/2009/02/02/livin-life-with-a-j-pouch/#comment-5655 Comment on Photos 1: Colectomy by Mark http://feedproxy.google.com/~r/commentsjpouchnet/~3/VmqlNFOHZ4M/ Mark Wed, 04 Nov 2009 15:41:09 +0000 http://ucstory.wordpress.com/surgery-1/#comment-5654 Hi Beatriz, Do you know what has made your Dr. say you have CD and not UC? Unfortunately, that seems to happen to most people around surgery time, they take a blood test that shows possible CD markers? Is that your situation, if so, let me know and we'll send you some info on that. They thought I too had CD and not UC but turns out just UC. Now, there are people who do have CD instead of UC and living well with their jpouch like Lizz -- here is a link to her posts http://www.jpouch.net/author/lizz/ She is incredibly strong and been through A LOT, but if you do have CD she will be a great contact for you. And we do know others who are now living well with a perm ileo or jpouch with CD. So although it is not the ideal diagnosis to have, there are happy endings. Stay in touch and we'll try to connect you to the right people in your shoes. Hi Beatriz, Do you know what has made your Dr. say you have CD and not UC? Unfortunately, that seems to happen to most people around surgery time, they take a blood test that shows possible CD markers? Is that your situation, if so, let me know and we’ll send you some info on that. They thought I too had CD and not UC but turns out just UC. Now, there are people who do have CD instead of UC and living well with their jpouch like Lizz — here is a link to her posts

http://www.jpouch.net/author/lizz/ She is incredibly strong and been through A LOT, but if you do have CD she will be a great contact for you. And we do know others who are now living well with a perm ileo or jpouch with CD. So although it is not the ideal diagnosis to have, there are happy endings. Stay in touch and we’ll try to connect you to the right people in your shoes.


]]> http://www.jpouch.net/photos/surgery-1/#comment-5654 Comment on Ileostomy Stoma Photos by Mark http://feedproxy.google.com/~r/commentsjpouchnet/~3/3q7rFGpI_5A/ Mark Wed, 04 Nov 2009 15:36:11 +0000 http://ucstory.wordpress.com/?p=188#comment-5653 Bill - that is great news about your quick reversal time. I could have had mine at 2 months but opted for 3 because of work issues. It will be great for you to just get your jpouch and learn to live your new and healthy life. Please let us know how you are doing, and we are here if you need anything adjusting to your new pouch. Bill – that is great news about your quick reversal time. I could have had mine at 2 months but opted for 3 because of work issues. It will be great for you to just get your jpouch and learn to live your new and healthy life. Please let us know how you are doing, and we are here if you need anything adjusting to your new pouch.


]]> http://www.jpouch.net/2008/06/29/ileostomy-stoma-photos/#comment-5653 Comment on Our Message Board by Danielle http://feedproxy.google.com/~r/commentsjpouchnet/~3/Z7h4wcUEadg/ Danielle Wed, 04 Nov 2009 15:32:59 +0000 http://ucstory.wordpress.com/?page_id=308#comment-5652 Good Luck ML! Heal fast and well. Be sure to stay as positive as possible even when things get challenging. Good Luck ML! Heal fast and well. Be sure to stay as positive as possible even when things get challenging.


]]> http://www.jpouch.net/surgery-photos-your-story/#comment-5652 Comment on Our Message Board by huskerharry http://feedproxy.google.com/~r/commentsjpouchnet/~3/dKAIg3I3c8E/ huskerharry Wed, 04 Nov 2009 04:20:34 +0000 http://ucstory.wordpress.com/?page_id=308#comment-5649 Hey ML! Best of luck. Not sure if you saw my last post saying I didn't need surgery at this stage. I will definitely be following your journey! Again, best of luck!! "Harry" Hey ML! Best of luck. Not sure if you saw my last post saying I didn’t need surgery at this stage. I will definitely be following your journey!

Again, best of luck!!

“Harry”


]]> http://www.jpouch.net/surgery-photos-your-story/#comment-5649 Comment on Our Message Board by ML http://feedproxy.google.com/~r/commentsjpouchnet/~3/6y7mrX-ho4s/ ML Tue, 03 Nov 2009 19:28:44 +0000 http://ucstory.wordpress.com/?page_id=308#comment-5648 first surgery in 14 days. feel free to follow my surgery journey at my blog. ML first surgery in 14 days. feel free to follow my surgery journey at my blog.
ML


]]> http://www.jpouch.net/surgery-photos-your-story/#comment-5648 Comment on Photos 1: Colectomy by Beatriz http://feedproxy.google.com/~r/commentsjpouchnet/~3/wrwidEtJ0MY/ Beatriz Tue, 03 Nov 2009 05:35:05 +0000 http://ucstory.wordpress.com/surgery-1/#comment-5647 Hi Mark !!! Your story is amazing as I shed a few tears while reading it. I had UC for over 5 yrs and on sept 7 i had my first part of the surgery. I too know exactly what u have gone through and felt inside n out. You know I have never met anyone in person that had UC but I have communicated with others via email. It's a whole world out their that people are going or have gone Through what we have.! Right now, my dr is saying that there is a possiblity that I have crohns and not Uc..!! Great!! I know it sucks n it deeply saddens me. They found cancer like cells around the rectum n need to remove it completely ... Now js debating if I should go with the second part or stay with the stoma...all I wished for the past few years is to be healthy n gain some wieght. Now I feel great physically n well emotionally it's a lil difficult some days. However, everyday I wake up like it's a new day and ready for the best to come. I wanted to thank you for putting ur journey through Internet and for others to be educated. I wish you guys the best!!!! Beatriz M Hi Mark !!! Your story is amazing as I shed a few tears while reading it. I had UC for over 5 yrs and on sept 7 i had my first part of the surgery. I too know exactly what u have gone through and felt inside n out. You know I have never met anyone in person that had UC but I have communicated with others via email. It’s a whole world out their that people are going or have gone Through what we have.! Right now, my dr is saying that there is a possiblity that I have crohns and not Uc..!! Great!! I know it sucks n it deeply saddens me. They found cancer like cells around the rectum n need to remove it completely … Now js debating if I should go with the second part or stay with the stoma…all I wished for the past few years is to be healthy n gain some wieght. Now I feel great physically n well emotionally it’s a lil difficult some days. However, everyday I wake up like it’s a new day and ready for the best to come. I wanted to thank you for putting ur journey through Internet and for others to be educated. I wish you guys the best!!!!

Beatriz M


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