Comments on: Call for Stories, Blogs, Links, Photos http://www.jpouch.net/2008/06/09/call-for-stories-blogs-links-photos/ 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: Jackie Z. http://www.jpouch.net/2008/06/09/call-for-stories-blogs-links-photos/#comment-7397 Jackie Z. Tue, 11 May 2010 00:09:30 +0000 http://ucstory.wordpress.com/?p=99#comment-7397 Hi Wendy, I also have Multiple Sclerosis. I thought I was the lucky one having that AND uc! Honestly having both has made stop whining. I used to complain about MS all the time...then I got UC...and I learned what its really like to lead a sucky life. There are a lot of people in the MS community that also have multiple auto immune diseases. You're not alone my friend! Hi Wendy, I also have Multiple Sclerosis. I thought I was the lucky one having that AND uc! Honestly having both has made stop whining. I used to complain about MS all the time…then I got UC…and I learned what its really like to lead a sucky life. There are a lot of people in the MS community that also have multiple auto immune diseases. You’re not alone my friend!

]]> By: Wendy http://www.jpouch.net/2008/06/09/call-for-stories-blogs-links-photos/#comment-7393 Wendy Mon, 10 May 2010 18:51:08 +0000 http://ucstory.wordpress.com/?p=99#comment-7393 I have had the resection with j pouch done. had to live with an ileostomy for almost a year. it ate my skin away and right before my final takedown they were unsure what we were gonna do because i couldn't keep a pouch on. lol life is fun! I had my final takedown in oct of 1999. Since then the ride just gets funner and funner. because i have learned that ulcerative colitis people also often have immune disorders which is causing lots of other stuff . I have reactive arthritis, fibromyalgia, possibly lupus and i get this terrible cramping and swelling in my legs. possibly from lack of nutrition and vitamins because without the colon i dont absorb things well? anyone have similar problems? especially with the leg cramps and fibromyalgia? what do you do? I have had the resection with j pouch done. had to live with an ileostomy for almost a year. it ate my skin away and right before my final takedown they were unsure what we were gonna do because i couldn’t keep a pouch on. lol life is fun! I had my final takedown in oct of 1999. Since then the ride just gets funner and funner. because i have learned that ulcerative colitis people also often have immune disorders which is causing lots of other stuff . I have reactive arthritis, fibromyalgia, possibly lupus and i get this terrible cramping and swelling in my legs. possibly from lack of nutrition and vitamins because without the colon i dont absorb things well? anyone have similar problems? especially with the leg cramps and fibromyalgia? what do you do?

]]> By: Elise http://www.jpouch.net/2008/06/09/call-for-stories-blogs-links-photos/#comment-4693 Elise Sun, 12 Jul 2009 23:47:23 +0000 http://ucstory.wordpress.com/?p=99#comment-4693 Hi Julia, My name is Elise. Brevin and Mark mentioned me above. I too was terrified just as recently as a month ago. I have Crohn's disease, but it wasn't determined until the surgeron actually had his hands on my colon during surgery. My disease acted more like UC and I was scheduled for two part J-Pouch surgery like most everyone else on this site. The surgeon did not create my J-Pouch because my colon looked more like Crohn's disease after all. Pathology then confirmed it a few days later, so I have a permanent ileostomy. Now Julia, I was inconsolable, devistated! I really thought my life was over and this was not even three weeks ago! Let me tell you, this past week has been amazing. I feel the best I have felt in probably five years! I know that these are just my words and I do understand the fear and feelings you have right now. I am actually going to be okay with this new friend of mine (Burberry the stoma), you will be fine Julia, better than fine. I don't know if you are on facebook, but you can find me on there too, my email is elisesunshine@yahoo.com Sincerely, Elise Hi Julia, My name is Elise. Brevin and Mark mentioned me above. I too was terrified just as recently as a month ago. I have Crohn’s disease, but it wasn’t determined until the surgeron actually had his hands on my colon during surgery. My disease acted more like UC and I was scheduled for two part J-Pouch surgery like most everyone else on this site. The surgeon did not create my J-Pouch because my colon looked more like Crohn’s disease after all. Pathology then confirmed it a few days later, so I have a permanent ileostomy. Now Julia, I was inconsolable, devistated! I really thought my life was over and this was not even three weeks ago! Let me tell you, this past week has been amazing. I feel the best I have felt in probably five years! I know that these are just my words and I do understand the fear and feelings you have right now. I am actually going to be okay with this new friend of mine (Burberry the stoma), you will be fine Julia, better than fine. I don’t know if you are on facebook, but you can find me on there too, my email is elisesunshine@yahoo.com

Sincerely,

Elise

]]> By: Julia Oursler http://www.jpouch.net/2008/06/09/call-for-stories-blogs-links-photos/#comment-4692 Julia Oursler Sun, 12 Jul 2009 23:31:12 +0000 http://ucstory.wordpress.com/?p=99#comment-4692 Dear Mark: Thank you for all the hook-ups. If you read my reply to Brevin, you'll see I don't have the j-pouch option. In a way I'm very curious about the whole process, but still do not want this happening. I will definitely be looking into the sites you suggested. It's great to know that I'm not alone. I'll be back! Julia Dear Mark: Thank you for all the hook-ups. If you read my reply to Brevin, you’ll see I don’t have the j-pouch option. In a way I’m very curious about the whole process, but still do not want this happening. I will definitely be looking into the sites you suggested. It’s great to know that I’m not alone. I’ll be back!
Julia

]]> By: Julia Oursler http://www.jpouch.net/2008/06/09/call-for-stories-blogs-links-photos/#comment-4691 Julia Oursler Sun, 12 Jul 2009 23:29:16 +0000 http://ucstory.wordpress.com/?p=99#comment-4691 Dear Brevin: Thank you! Unfortunately, I won't be able to have a j-pouch I was told because of other past surgeries which took most of the perineum. I'm trying to wrap my head around all of this and I really liked your joke. I'll be keeping in touch. Julia Dear Brevin: Thank you! Unfortunately, I won’t be able to have a j-pouch I was told because of other past surgeries which took most of the perineum. I’m trying to wrap my head around all of this and I really liked your joke. I’ll be keeping in touch.
Julia

]]> By: Mark http://www.jpouch.net/2008/06/09/call-for-stories-blogs-links-photos/#comment-4690 Mark Sun, 12 Jul 2009 23:07:57 +0000 http://ucstory.wordpress.com/?p=99#comment-4690 Hey Julia! Yep, this is a viable site (so we like to think :) Brevin is right that Elise will need to chime in and talk with you since she has the CD and perm ileo option as a reality. Also, you should check out Lizz's posts (see here http://www.jpouch.net/author/lizz/ ) She has a jpouch with CD, but she would be a good one also to touch base with. Then of course, there is the wonderful discussion board at www.jpouch.org that we always recommend for newbies to make contact. And over at www.healingwell.com there is a great discussion board for CD. Oh, and of course, there is Sarah B., her story is told in this link. she has a perm ileo and is really involved in different ostomy support groups,etc...she is also a great contact for you http://www.jpouch.net/2008/12/28/sarahs-permanent-ileostomy/ The long and the short of it is that YOU ARE NOT ALONE, and anything you need just give us a holler and we'll try to help or send you somewhere we know for help. Hey Julia! Yep, this is a viable site (so we like to think :) Brevin is right that Elise will need to chime in and talk with you since she has the CD and perm ileo option as a reality. Also, you should check out Lizz’s posts (see here http://www.jpouch.net/author/lizz/ ) She has a jpouch with CD, but she would be a good one also to touch base with. Then of course, there is the wonderful discussion board at http://www.jpouch.org that we always recommend for newbies to make contact. And over at http://www.healingwell.com there is a great discussion board for CD. Oh, and of course, there is Sarah B., her story is told in this link. she has a perm ileo and is really involved in different ostomy support groups,etc…she is also a great contact for you http://www.jpouch.net/2008/12/28/sarahs-permanent-ileostomy/ The long and the short of it is that YOU ARE NOT ALONE, and anything you need just give us a holler and we’ll try to help or send you somewhere we know for help.

]]> By: Brevin http://www.jpouch.net/2008/06/09/call-for-stories-blogs-links-photos/#comment-4683 Brevin Sun, 12 Jul 2009 18:55:17 +0000 http://ucstory.wordpress.com/?p=99#comment-4683 Julia! I hope this is a viable web site ha : ) Julia, meet Elise. Elise, meet Julia. Elise just went in for j-pouch surgery but the doctor held off, due to the strong possibility of Crohn's. Elise currently has an ileostomy and the takedown is currently MIA. Elise, help me out here! It's definitely a big step, and being scared is totally fine! Please just know that you're not alone. Poke around this site, there's a butt load of info here. : ) Julia! I hope this is a viable web site ha : )
Julia, meet Elise. Elise, meet Julia. Elise just went in for j-pouch surgery but the doctor held off, due to the strong possibility of Crohn’s. Elise currently has an ileostomy and the takedown is currently MIA. Elise, help me out here!
It’s definitely a big step, and being scared is totally fine! Please just know that you’re not alone. Poke around this site, there’s a butt load of info here.
: )

]]> By: Julia Oursler http://www.jpouch.net/2008/06/09/call-for-stories-blogs-links-photos/#comment-4681 Julia Oursler Sun, 12 Jul 2009 15:45:06 +0000 http://ucstory.wordpress.com/?p=99#comment-4681 I don't know if this is still a viable website, but I'm giving it a try. I was diagnosed with Crohn's disease 22 years ago and for the last 20 years was able to control the flare-ups without medication. In 2000, I had my first resection; in December 2008, I had by second. I was hoping that things would get better, but they have actually gotten worse. I am now dealing with the possibility of having an ileostomy and I'm absolutely terrified. I cannot imagine how I'm going to be able to handle this both physically and psychologically. I'd like to find others who are at the stage where permanent surgery is in their future, how they're handling it, and what they're feeling. Please get in touch with me and share. I'm so scared. Thank you, Julia I don’t know if this is still a viable website, but I’m giving it a try. I was diagnosed with Crohn’s disease 22 years ago and for the last 20 years was able to control the flare-ups without medication. In 2000, I had my first resection; in December 2008, I had by second. I was hoping that things would get better, but they have actually gotten worse. I am now dealing with the possibility of having an ileostomy and I’m absolutely terrified. I cannot imagine how I’m going to be able to handle this both physically and psychologically. I’d like to find others who are at the stage where permanent surgery is in their future, how they’re handling it, and what they’re feeling.

Please get in touch with me and share. I’m so scared.

Thank you,

Julia

]]> By: ML http://www.jpouch.net/2008/06/09/call-for-stories-blogs-links-photos/#comment-4245 ML Sun, 14 Jun 2009 17:55:17 +0000 http://ucstory.wordpress.com/?p=99#comment-4245 This is my family blog but I have just posted (this past friday and the friday prior) about what i am dealing with. Years with colitis and now I am in remission but lucky me....they found high grade dysplaisa. So now I battle my will and the the reality that surgery is in my near future. I would consider detailing my journey. I am in a really scared place right now so I am looking at this site for more info and encouragement. I am currently interviewing surgeons. Come by and visit my site and more than likely I will move my journey from my family blog on to one that can be just about this journey. ML This is my family blog but I have just posted (this past friday and the friday prior) about what i am dealing with. Years with colitis and now I am in remission but lucky me….they found high grade dysplaisa. So now I battle my will and the the reality that surgery is in my near future. I would consider detailing my journey. I am in a really scared place right now so I am looking at this site for more info and encouragement. I am currently interviewing surgeons. Come by and visit my site and more than likely I will move my journey from my family blog on to one that can be just about this journey. ML

]]> By: mdhilton http://www.jpouch.net/2008/06/09/call-for-stories-blogs-links-photos/#comment-165 mdhilton Sat, 14 Jun 2008 22:16:22 +0000 http://ucstory.wordpress.com/?p=99#comment-165 I was just sent this link to a group of stories of individuals and their jpouch journey. These are well-written and throughtful articles that may be of interest to you: http://www.the-ia.org/pouch_surgery.aspx Thanks to JM for sending this link to us! I was just sent this link to a group of stories of individuals and their jpouch journey. These are well-written and throughtful articles that may be of interest to you:

http://www.the-ia.org/pouch_surgery.aspx

Thanks to JM for sending this link to us!

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