Call for Stories, Blogs, Links, Photos

by on Monday, June 9, 2008 22:12
This entry is filed under: living with j pouch

In an attempt to make this blog as informative and helpful to a diverse group of j pouchers in all stages (temp ileo, perm ileo, no surgery yet, any stage welcome), we are asking that you send us your stories, links to your blogs, photos, links to photos, etc…We’d love to connect our network to others around so that when others visit our site they can have input from diverse people! 

We are especially hopeful that we can provide the female perspective on this blog – if you are a female, and have or will document your surgery journey with photos, please consider allowing us to link or share your journey on this site.  As you can tell right now we represent the male journey (which is excellent), however, we need the females represented as well! 

What we’ve learned by sharing this story of Mark and support for Mark is helping others is the best way to heal and cope.  If your story, blog, photos, etc.. can help another individual whether a stranger or a family/friend we encourage you to share. 

We want this to be a positive resource so that both you and your loved ones can vist and hear stories that fit your situations. Send us a comment or send an email to mdhilton@gmail.com

 

Photo by: Sidereal

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14 Responses to “Call for Stories, Blogs, Links, Photos”

  1. avatar

    mdhilton says:

    June 14th, 2008 at 10:16 pm

    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!

    [Reply]

  2. avatar

    ML says:

    June 14th, 2009 at 10:55 am

    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

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  3. avatar

    Julia Oursler says:

    July 12th, 2009 at 8:45 am

    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

    [Reply]

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    Brevin Reply:

    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.
    : )

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    Julia Oursler Reply:

    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

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    Mark Reply:

    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.

    [Reply]

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    Julia Oursler Reply:

    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

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    Elise Reply:

    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

  4. avatar

    Wendy says:

    May 10th, 2010 at 11:51 am

    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?

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    Jackie Z. Reply:

    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!

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  5. avatar

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    [Reply]

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    Sandra says:

    October 22nd, 2016 at 5:09 am

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    [Reply]

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    usgeo.org says:

    October 27th, 2016 at 6:01 pm

    Frank,I am currently doing that. They are both work from home sales positions. Both are salaried and commission but most importantly completely different industries and products. I avoid a non-compete but if caught and one wants to fire me over it, I understand. Most important thing is to meet your goals for each.

    [Reply]

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