Recently had ileostomy for crohn's

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Regular Member

Date Joined Aug 2008
Total Posts : 351
   Posted 8/29/2008 12:10 PM (GMT -6)   
Hi, I'm new to the site and I have had crohn's disease since I was 20 years old.  I 've had it for 6 years now.  After many hospitalizations, never being in remission, and being on every med known to man for crohn's I recently had a small bowl ressection and now have a temporary ileostomy.  It really sucks wearing a bag and actually seeing my small intestine hanging out of my body.  The good thing though not having to worry about going to the bathroom.  I can go out and there is no fear of oh my god i have to go to the bathroom where is it.  and the pain is completely gone.  i was going to the bathroom sometimes 25 times a day.  so to go from that to okay i have to empty my bag maybe 6 to 8 times a day is worth it.  does anyone else have this same issue.  if you do i'd love to hear about how you're dealing with it.  don't get me wrong i have majore anxiety and panic attacks about it and i cannot wait to have my reversal and start my new life.  they got all the disease out so right now i am crohn's disease free.  love to hear from some people with similar experience.

Regular Member

Date Joined Feb 2008
Total Posts : 298
   Posted 8/29/2008 12:43 PM (GMT -6)   

I have not had an ileostomy but want to welcome you to the healing well site! This place has helped me out immensely! Good luck with everything and welcome!


Regular Member

Date Joined Aug 2008
Total Posts : 21
   Posted 8/29/2008 1:10 PM (GMT -6)   


   Hi Bella,   I also have not recieved the bag yet.. I actually just returned from having an MRI on the remaining parts of my intestines. Then I have to bring that to my 3rd GI for another opinion. I'm like you though, I have major anxiety over the whole deal. If i lose the rest of my colon... how will the quality of life be then. Mine would be permanent though from what they are telling me because there is not enough heathy tissue to do a reversal if I decide. I wish you luck though and hate that you are going through this cuz I know it really sux!!

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3106
   Posted 8/29/2008 8:40 PM (GMT -6)   

Hi Bella--welcome to the site!  I, too, have an ileostomy which is now permanent.  I did have a temporary one...twice!  Once for three months for my sm intestines to heal, and the second one I elected because I was having so many problems which included fistulas and more...I just elected to go "permanent" and continue to enjoy my life "with Stanley"!

You should check out the ostomies forum here...there are many people dealing with the same questions/concerns that you are and how they are dealing with them.  Hope to see you over there and good luck!

SouthPaw, you should check it out, too!

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