Community Forum

Looking to talk w/ someone who may also have this extensive surgery

 Reply posted for paapaa.

I do not have my rectum or anus.  When I had my surgery 25 years ago my doctor recommended I get my colon, rectum and anus removed due to the high risk of cancer in these areas with my disease.  I know that I really wanted to get the j-pouch done but my doctor did not recommend due to the fact he was not sure if I also had Crohns.  Since my surgery some 25 years ago I have only had minor problems, I have not had to have any other surgeries since then.  In the end I guess taking it all was a wise decision from my doctor.  I have read how the j-pouch and anal pull through can have many problems.  I am fine with my bag.  It gave me back my life and honestly without it I would not have lead a normal life.  Being in constant pain and always having to go to the bathroom is not a normal life so life with a bag made my life normal again. 

 Reply posted for sandina37.

Hi Sandi, Thank you for replying. My Best Friend's name is Sandy :). I suffered w/ UC for 8 yrs before having an illeo anal pullthrough that after 1 yr. was not working. Developed vaginal to rectal fistula and had the bloody diarrhea coming out both "exits". That was a total nightmare. Finally had a permanent illeostomy also removing the rectum and anus. 10 surgeries to date including severe adhesions. I am still bothered to this day with adhesions causing pelvic floor dysfunction. LOTS of pressure where the rectum used to be. UGH. I am so tired of this chronic pain. I am 55 now and it all started at 29. Really try to keep the spirits up. Had to retire on disability after last surgery, so missing the interaction w/ co workers and structure in my life. I also suffer w/ painful peripheral neuropathy and tinnitus, Its relentless for the past 3 yrs. I wish it would stop. Its incredible to write this story in a couple of click of the keyboard after actually living through all the horror. Thanks for listening, write back please. Do you still have your rectum and anus?

 Reply posted for paapaa.

Hi PaaPaa,

I had a permanent ileostomy (total colectomy) when I was 25 years old, I am now 51.  I dealt with UC for 4 long years before I had the surgery.  At the time of my surgery they did not do a lot of the J pouch surgeries so I did not have that as an option.  In the end it was the best thing that happened to me.  Having had UC the ileostomy was a cure for the disease so I was pain free just had to adjust to having the bag.  I had two children with the ileostomy with no problem.  I would be glad to answer any questions you may have or if you just need someone to talk to.

Sandi 

 Reply posted for paapaa.

My son was 16 years old when he had  colostomy surgery.  They removed all of his large colon.    He wore an illeostomy bag and it was truly the valley experience of our lives.    He was told that he would more than likely have the bag on him permanently.    But God as always has the last word.   After much prayer,  9 months later he had surgery to remove the illeostomy bag.   As a matter of  FACT - his doctor told us that he saw in the x-ray some new colon growth.  Miraculous!
Is there anything to hard for God?     Mark 10:27, Mark :24

 Reply posted for paapaa.


Speaking with others who have been through the surgery may be helpful. There are a number of support groups you can check out for support.  You can try these:


CCFA local chapters organize support groups for patients and loved ones.  For information on support groups in your area, you can contact your local chapter. Please follow the chapter locator link here: http://www.ccfa.org/chapters/ 
 
UOAA can also provide information about possible ostomy support groups in your area http://www.uoaa.org/supportgroups.shtm l
 
There are also online communities and discussion boards that provide a way to connect with others if an in-person support is not available in your area.
 
CCFA has a community discussion board with several forums located here: www.ccfacommunity.org 
 
UOAA also has a discussion board for patients and loved ones located here: http://www.uoaa.org/forum/index.php 
 
C3Life provides a forum, photo gallery, video gallery, and blogs for patients, loved ones and clinicians.  You can find these here: http://www.c3life.com/ostomy/community/default.aspx  
 
To find support after Ileoanal Reservoir (J-Pouch) Surgery the J-Pouch group has a discussion board located here: http://j-pouch.org/groupee/forums   and a live chat room located here: http://www.j-pouch.org/chat.html   .