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New Member

Date Joined Jun 2010
Total Posts : 3
   Posted 6/21/2010 5:24 PM (GMT -7)   
My name is Jessie and my stoma's name is "Stomy." I wass born with a rare disease that is called Beck-Wiedemann Syndrome. I wasn't supposed to have survied birth. My insides where outside I have had 7 surgeries and recently traveled tto Cleveland (I live in Arkansas) to Cleveland Clinic to have a ileostomy. I am 27b years old and devasated. I cry all the time and I feel as if my body is forgein to me. I struggled with Chronic Constpation all of my life and now I am going to the bathroom in my sleep. My friend that I met in the hospital (my roomate) has Crohn's and she told me to come to this site for help. I am so new at this ostomy thing that it's scary I am still trying new products and many don't stick and I wake up in a pile of poop!!!! I am frustrated and want a reversal. But before I got Stomy (April12) I was taking 30 doses of Mirlax, 6 Dolcolax, and 3 enamas every two days to try and stay cleaned out. I was in and out of the hospital all of the time with impactions. I have had two Obstrctions. I am a walking mircle I know it but I hate my ostomy and the "new" life. How will I ever adjust????????????????? smhair

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 6/21/2010 5:45 PM (GMT -7)   
Stomy~welcome to the forum!

I'd suggest that you try the Ostomies Forum(quick jump on the right side of the page) may find more in common since you don't have Crohn's. There are people with ostomies for various reasons and they can certainly offer advice so you can live in harmony with your 'new way' of going :-)
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008

Veteran Member

Date Joined May 2003
Total Posts : 2481
   Posted 6/21/2010 8:14 PM (GMT -7)   
Hi Stomy!

Sorry for all you're going through. Most of us crohnies can relate to your present pooping problem, but not all of us have ostomies.
I'm not sure what kind of meds you can try with an ostomy, but you can ask always your doc if there is something you can do about this.
And I encourage you also to check the ostomies forum and inquire with those fellas. They've probably got the best advice.

Hopefully someone who has cd and an ostomy will respond too.

I hope you get relief soon and keep your chin up!

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