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laymanz
New Member


Date Joined Sep 2008
Total Posts : 17
   Posted 9/10/2008 12:38 PM (GMT -6)   
Hello everyone I am new here looking for some comfort..i am scheduled to get a ileostomy on october 6 and the dr said it would not be able to be reversed....i hear there are dr out there that can put a pouch on the inside of you and you wont have to have the bag on the outside...i live in sc and wonder if anyone knows of a dr who does this...my dr is very cold and unfilling but he is the third one i have been to and i am very sick and loose but at a rate where i have to get tranfused twice a week so it needs done very quickly...can anyone help?

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 9/10/2008 1:04 PM (GMT -6)   
Why are you having surgery?

If you are talking about the jpouch, I would recommend you see a very experienced colorectal surgeon. You can go to www.j-pouch.org and post and ask for a recommendation in your area or close to you. Don't be surprised if you have to travel to a major metropolitan area to get a very experienced surgeon. I can't stress enough how important it is to have this surgery done by someone who has done a lot of them.

If you are having surgery for Crohn's your doctor is correct. Typically the jpouch is not done for Crohn's patients unless the Crohn's is limited to the colon only.

Without knowing more about you it's hard to guess what your possibilities are?

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


laymanz
New Member


Date Joined Sep 2008
Total Posts : 17
   Posted 9/10/2008 1:09 PM (GMT -6)   
I had radiation for cervical cancer to my lower abdomen and they radiated my colon and my rectum so it all has to come out...i was in contact with a nurse from cleveland clinic in ohio...told her it was urgent about a month ago she still hasnt called me back...i called again today and left a not so very nice message for her...she has had my records for 5 weeks and still hasnt called me back with an answer

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 9/10/2008 1:29 PM (GMT -6)   
I am surprised about the Cleveland Clinic, they are usually more on top of it than that!

Nevertheless the CC is an outstanding facility with very experienced doctors. If a jpouch is not an option ask about a k-pouch.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


laymanz
New Member


Date Joined Sep 2008
Total Posts : 17
   Posted 9/10/2008 1:47 PM (GMT -6)   
the nurse just called be back and I missed the call anyhow she said she talked to the dr a few days ago and he did have some options for me so if i would call back she will tell me about them...i called and got her answering machine so i am just waiting...also i fould a dr out of spartanburg reginal that does the j pouch surgery when i explained that the dr i have now is taking the whole colon out even thou its not all effected she said oh no no no so i have an apt with him sept 19 so wish me luck

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 9/10/2008 8:44 PM (GMT -6)   
Best of Luck to you and please keep us posted on your appt.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted 9/10/2008 9:43 PM (GMT -6)   

Hi Laymanz!

I had a couple of surgeries at the Cleveland Clinic.  My Colorectal Surgeon is Tracy Hull and her RN/ET Nurse Practicioner is Crinia Floruta.  They are both very nice and will be completely honest and straight with you.  No beating around the bush.  Of course, you may not always get the news you're hoping for. 

The Cleveland Clinic can also perform what is called a Koch Pouch or K-Pouch.  This is also an internal pouch.  The other type of internal pouch is a BCIR Barnett's Continent Intestinal Reservior.  It is similar to the K-Pouch.  The J Pouch is much different and like other people said it cannot always be performed.

Go to http://www.ostomates.org/ostomies for info.

The Cleveland Clinic really is a great hospital.  Many of the people there have gone the extra mile for me.

Good luck!

 


Post Edited (Ohio43) : 9/10/2008 9:46:29 PM (GMT-6)

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