Comments on: Sarah’s Permanent Ileostomy http://www.jpouch.net/2008/12/28/sarahs-permanent-ileostomy/ Stories: Ostomy, Ileostomy, Jpouch, Colitis, Crohn's, Surgery and Support Thu, 09 Feb 2012 01:41:43 +0000 hourly 1 http://wordpress.org/?v=3.3 By: Eric http://www.jpouch.net/2008/12/28/sarahs-permanent-ileostomy/#comment-452 Eric Wed, 31 Dec 2008 00:00:46 +0000 http://ucstory.wordpress.com/?p=769#comment-452 You know, Sarah, I was having some issues with bleeding while diverted. When looking into it, I came across something called diversion colitis, which happens when your remaining pieces don't get the nutrients they need. I was VERY worried that things wouldn't work, but gave it a go. On the flip side of it, if something fails and I have to go back, I will have a much shorter intestine than I did when diverted, so there are MANY considerations for surgery. Good to hear your story, welcome! You know, Sarah, I was having some issues with bleeding while diverted. When looking into it, I came across something called diversion colitis, which happens when your remaining pieces don’t get the nutrients they need. I was VERY worried that things wouldn’t work, but gave it a go. On the flip side of it, if something fails and I have to go back, I will have a much shorter intestine than I did when diverted, so there are MANY considerations for surgery. Good to hear your story, welcome!

]]> By: Sarah B http://www.jpouch.net/2008/12/28/sarahs-permanent-ileostomy/#comment-451 Sarah B Mon, 29 Dec 2008 20:49:40 +0000 http://ucstory.wordpress.com/?p=769#comment-451 I still have my rectal stump, it needs to be removed, the CR surgeon left it so he did not make the choice for me. My rectal stump/anus, still gives me problems, I have severe proctitis and still bleed, have some pain and leak mucous at night, and some times when exerting myself and forgetting to clinch... Therefore, I feel if un-connected I am having these issues, then connected, it would be worse, my diagnosis is still UC though. I hope that answers your questions, if you have anymore I more than happy to answer them as openly and as honestly as possible. I wish each and everyone of you well, in whatever course of treatment you choose... I still have my rectal stump, it needs to be removed, the CR surgeon left it so he did not make the choice for me. My rectal stump/anus, still gives me problems, I have severe proctitis and still bleed, have some pain and leak mucous at night, and some times when exerting myself and forgetting to clinch…
Therefore, I feel if un-connected I am having these issues, then connected, it would be worse, my diagnosis is still UC though.
I hope that answers your questions, if you have anymore I more than happy to answer them as openly and as honestly as possible.
I wish each and everyone of you well, in whatever course of treatment you choose…

]]> By: Megan http://www.jpouch.net/2008/12/28/sarahs-permanent-ileostomy/#comment-450 Megan Mon, 29 Dec 2008 20:00:52 +0000 http://ucstory.wordpress.com/?p=769#comment-450 Eric, thanks for saying that we are not in favor of one way or other b/c it is definately the individuals choice. It is a great discussion to have though b/c it seems everyone having the colectomy and making that decision for jpouch or perm ileo has to weigh the options and hearing all sides is so important. Eric, thanks for saying that we are not in favor of one way or other b/c it is definately the individuals choice. It is a great discussion to have though b/c it seems everyone having the colectomy and making that decision for jpouch or perm ileo has to weigh the options and hearing all sides is so important.

]]> By: Eric http://www.jpouch.net/2008/12/28/sarahs-permanent-ileostomy/#comment-449 Eric Mon, 29 Dec 2008 19:27:51 +0000 http://ucstory.wordpress.com/?p=769#comment-449 You know, my thoughts were just along those very lines: if it doesn't work, I can always go back. But that would mean a total of 3-4 surgeries for most people, 5 for me. Every time you go in for surgery, there is always the chance that you won't survive the surgery, however small a chance that is. I still did it, because I wanted to roll over onto my stomach and not worry. I also am a skier, and I take tumbles off of cliffs that would loosen even the best belt/ostomy bag combination. I, too, am curious why Sarah chose permanent. But, please don't get the wrong idea from our questions, we are in NO WAY in favor of one lifestyle over another. Whatever allows you to get your life back is the way to go! You know, my thoughts were just along those very lines: if it doesn’t work, I can always go back. But that would mean a total of 3-4 surgeries for most people, 5 for me. Every time you go in for surgery, there is always the chance that you won’t survive the surgery, however small a chance that is. I still did it, because I wanted to roll over onto my stomach and not worry. I also am a skier, and I take tumbles off of cliffs that would loosen even the best belt/ostomy bag combination. I, too, am curious why Sarah chose permanent. But, please don’t get the wrong idea from our questions, we are in NO WAY in favor of one lifestyle over another. Whatever allows you to get your life back is the way to go!

]]> By: Megan http://www.jpouch.net/2008/12/28/sarahs-permanent-ileostomy/#comment-448 Megan Mon, 29 Dec 2008 18:59:26 +0000 http://ucstory.wordpress.com/?p=769#comment-448 Hi Sarah, Just like Marianne asked about why you choose the perm ileo instead of going through with the jpouch is such a great question. That question is one of hte biggest ones asked on the blog and on jpouch.org when people are in the temp ileo phase and wondering whether or not they should proceed with the jpouch. Most of the advice I see is that people say try for the jpouch and if it doesn’t work out then go back to a perm ileo. But in your case you didn’t want to risk the jpouch not working becuase you didn’t want to take any more time out of your life risking being sick? Megan Hi Sarah,

Just like Marianne asked about why you choose the perm ileo instead of going through with the jpouch is such a great question. That question is one of hte biggest ones asked on the blog and on jpouch.org when people are in the temp ileo phase and wondering whether or not they should proceed with the jpouch. Most of the advice I see is that people say try for the jpouch and if it doesn’t work out then go back to a perm ileo. But in your case you didn’t want to risk the jpouch not working becuase you didn’t want to take any more time out of your life risking being sick?

Megan

]]> By: Marianne http://www.jpouch.net/2008/12/28/sarahs-permanent-ileostomy/#comment-445 Marianne Mon, 29 Dec 2008 18:33:24 +0000 http://ucstory.wordpress.com/?p=769#comment-445 Sarah, You have a wonderful attitude that is quite inspiring! I am positive as well but it has definetely not been easy; sometimes I do get sad. I had the same surgery subtotal colectomyover 2 months ago(1 of a possible 3 step) and contemplating to go ahead with the J-Pouch surgery but still hesitating as I was so very sick having spent about 2 and half months in the hospital and somehow do not want to go back to the hospital and endure more recoveries and possible complications. You have chosen to have it permanent; what was the reason behind this if I may ask? Marianne Sarah,
You have a wonderful attitude that is quite inspiring! I am positive as well but it has definetely not been easy; sometimes I do get sad. I had the same surgery subtotal colectomyover 2 months ago(1 of a possible 3 step) and contemplating to go ahead with the J-Pouch surgery but still hesitating as I was so very sick having spent about 2 and half months in the hospital and somehow do not want to go back to the hospital and endure more recoveries and possible complications. You have chosen to have it permanent; what was the reason behind this if I may ask?
Marianne

]]> By: Sarah B http://www.jpouch.net/2008/12/28/sarahs-permanent-ileostomy/#comment-447 Sarah B Mon, 29 Dec 2008 04:39:04 +0000 http://ucstory.wordpress.com/?p=769#comment-447 Yes, Jodi had a UC diagnosis. Goes to show...we are EVERYWHERE :) Yes, Jodi had a UC diagnosis.
Goes to show…we are EVERYWHERE :)

]]> By: Erica http://www.jpouch.net/2008/12/28/sarahs-permanent-ileostomy/#comment-446 Erica Mon, 29 Dec 2008 02:42:05 +0000 http://ucstory.wordpress.com/?p=769#comment-446 Wow, Sarah! You have such an incredible attitude and outlook on things, especially having a perm ileo, thanks for sharing your story. Do you know why Jodi from Road Rules has a jpouch? Did she have UC or something else? I used to watch her on that show and had NO IDEA she was "special". Take care, erica Wow, Sarah! You have such an incredible attitude and outlook on things, especially having a perm ileo, thanks for sharing your story. Do you know why Jodi from Road Rules has a jpouch? Did she have UC or something else? I used to watch her on that show and had NO IDEA she was “special”.

Take care,
erica

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