hysterectomy and ileostomy

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New Member

Date Joined Jun 2006
Total Posts : 16
   Posted 1/8/2007 7:25 PM (GMT -6)   
I have had an ileostomy since 1990.  I am 46 years old and have benign fibroid tumors and need a hysterectomy.  I have had problems for several years now with heavy bleeding and extremely long periods.  I had Novasure done last year and it didn't help.  I have been to two different gynecologists and both have expressed a little concern with doing the hysterectomy with me having this ileostomy, like there might be some kind of unknown problem of some sort.  Neither have been specific about it but i really need this done.  But I don't want to do it if there is danger or concerns about it.  Has any other women out there had this done and was there a problem?  I think I have a hernia in my ileostomy area, but am not sure.  Thanks for any advise!!

New Member

Date Joined Jan 2007
Total Posts : 3
   Posted 1/16/2007 9:16 PM (GMT -6)   
Hi!  I was wondering if you went ahead and hysterectomy? I had a koch pouch for 27 years that failed this year.  After 2 major surgeries to fix it, I needed an ostomy with a bag. It was suggested to me by 2 doctors that I get a hysterectomy at the same time since there is so much scar tissue that they longer I waited the harder it would be.  The hysterectomy really was not bothered at all by the ostomy.   Let me know how you are.  I am one week post op today.

New Member

Date Joined Sep 2007
Total Posts : 1
   Posted 9/8/2007 6:43 PM (GMT -6)   
Hope all went well with your surgery...
I am in a very similiar situation myself right now,
and if possible would appreciate any feedback or
helpful information from you, I also want you to know
your post has given me peace of mind, and I thank you
more than words can say. I have searched and read
for the last year trying to find if any other woman
had gone through this same procedure with the
same condition. 
We must be 2:1,000,000.
I am 46 also, and have had my ileostomy since 2000. I
am scheduled for a complete hysterectomy this month.
I also had numerous abdominal surgeries prior to my permanent
ileostomy, 3 c-sections, fibroids, lots of scar tissue and now
two large unidentified masses, the deal breakers! Surgery is now a must.
 I am a positive thinker, ready to have my life back, apprehensive about what might be in there, but ready for surgery to get it out,
 and start the recovery stage....I bet that is where you are now.
If your not ready to reply. I understand.....but would be
honored and accept anything you would care to share with me.
I've never joined a forum, or replied to posts until today.
Thanks for the inspiration :-)

Veteran Member

Date Joined Aug 2007
Total Posts : 1998
   Posted 9/8/2007 7:46 PM (GMT -6)   
Hello LLL -  I have an ileostomy and have had it since 1984.  Shortly after my surgery for CD (ileo),  I experienced horrible pain diagnosed as endometriosis.  Tried hormone treatment, etc, for 2 years.  At age 26, I had a hysterectomy.  They found a LOT of scar tissue, both ovaries were totally wrapped and strangled by the adhesions.  I had both of my surgeries done at Cleveland Clinic.  My gyn surgeon was primary, but my gastro surgeon opened and lysed (?) the adhesions before the gyn could do her thing.  I did have to appeal with insurance to get both of them covered - it was a long process, but I was used to fighting with the insurance company to get things covered as they should be.  I have been just fine as far as the surgery goes. 
When are you scheduled for surgery?  As with any abd surgery, you know it will take some time to recover.  But it sounds like you have been thru that several times already, so that will be nothing new for you.  It will be a relief to get rid of the pain and the unknown masses and be on the road to recovery.  Do keep in touch and let us know your progress.
Best of luck to you with your upcoming surgery.
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 

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