losing your rectum?!

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praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 12/30/2007 1:34 PM (GMT -7)   
Hello all,

I'm new to the site and mistakingly posted all of my questions regarding this pending ostomy in the crohns thread b/c I was unaware that there was an ostomy thread (only been a member for a few days).

N e way my question is as folows:
My doc says I need this temp ileostomy to give my bowels a rest and hopefully clean out my fistulas. However he mentioned that I need to have it before I might "lose my rectum" can n e one tell me what this means?!
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


badbaggirl
Regular Member


Date Joined Jul 2007
Total Posts : 275
   Posted 12/30/2007 2:22 PM (GMT -7)   
Many times when disease is so destructive to one's rectum a surgeon will remove it. Many people here have had this done including myself. Of course then, an ostomy is permanent. I had fistulas, abcesses and finally a fissure that was cancerous ...
BadBagGirl
Crohn's Disease, Colostomy due to cancer and I make darned good dill pickles.


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 12/30/2007 3:04 PM (GMT -7)   

thank you so much for your reply,

when this occurs what does it look like back there? do they sew you closed? do u feel abnormal? ( i mean any more than i know i will feel when i recieve this ileostomy)


25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


badbaggirl
Regular Member


Date Joined Jul 2007
Total Posts : 275
   Posted 12/30/2007 3:34 PM (GMT -7)   
My back side looks pretty much the same as it did but it does take a great deal of time to heal. It took WAY longer than the ostomy itself. about 6 months and even now it feels like it pulls. My skin was pretty damaged and burned there because I had massive radiation so I wasn't stiched up. It just had to heal from the inside out. Also some feel a difference in their vaginas as the rectum and anus help hold it up. (look on the intimacy thread). Don't mean to make it sound bad, because I no longer have all the problems I did. 6 months to a year is a short amount of time compared to ten years of having a very sore rear!

How about you others who had this done? I know many are very glad to have gotten rid of it!
BadBagGirl
Crohn's Disease, Colostomy due to cancer and I make darned good dill pickles.


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 12/30/2007 3:37 PM (GMT -7)   
thanks so much badbaggirl,

i guess you just gave me another confirmation that i need to go ahead and get this thing done. I figure if worse comes to worse i'll just stay in the house for six months :o/
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


badbaggirl
Regular Member


Date Joined Jul 2007
Total Posts : 275
   Posted 12/30/2007 4:27 PM (GMT -7)   
You DON'T have to stay in the house!!!! One month after surgery I went camping! The weekend after that I went on a 3 day fishing trip with my daughter! I just had to take a few things easy, but you will get on with life!
BadBagGirl
Crohn's Disease, Colostomy due to cancer and I make darned good dill pickles.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 12/30/2007 10:11 PM (GMT -7)   
you surely dont have to stay in the house, and you probably won't want too! you will find out how nice it is to go without having to look for a bathroom everywhere. You probably won't be up gallivanting around two weeks after, but it won't take long!
Having my rectum out was the hardest part for me to wrap my head around, i could not understand how you take out a hole, lol. But it looks the same, the only thing i can tell is that there is a small ridge i can fell back there.
It hurt, of course, but not too bad, mainly it was itchy, and they will give you stuff to help with that.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 12/30/2007 10:23 PM (GMT -7)   
I had CD and my rectum was involved.  So, after a temporary Ileo and a resection which failed - the CD came right back, my rectum, colon and several feet of small intestine were removed.  Once I healed I was ready to get out of the house!!  I had been pretty much house bound due to the big "D" and no control that the bag was a blessing in disguise.  I do about everything now.  Especially EAT!!!!  Oh, how I love to try new foods too.

Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 12/31/2007 4:06 AM (GMT -7)   
Your butt would look the same, only you wouldn't have a hole. I had Crohn's in the colon and rectum, so I had them removed. I have my entire small intestine, a permanent ileostomy, and have never felt better.

:-) Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy & ileostomy in '06.

Pain-free, med-free, and very thankful to be healthy again :)


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 12/31/2007 6:32 AM (GMT -7)   
Thank u guys for ur replies. They r truly helpful. 1 more question, I thought ii read somewhere that someone had a reversal after losing their rectum, is that possible? Do they still go from the bottom?
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/1/2008 3:52 PM (GMT -7)   
Once the rectum is gone, there's no chance for a reversal.
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