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First Time Ileostomy

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Posted 11/7/2006 2:36 AM (GMT 0)

I'm a 34 year old male diagnosed with Crohns.  I'm about 4 weeks post-op.  Was misdiagnosed 3 years ago with IBS, then Celiac Disease, Ulcerative Colitis and finally after 41 days in the hospital this time, they decided it was Crohns after removing my large intestine, and leaving 6 inches of rectum.  One of my questions, to others who have experienced this, is....if given the chance to get a reconnect should I?  I have been told different stories as to the success of this procedure.  I was told by my WOC nurse that there are patients that experience a horrible burning during BMs after reconnection.  I have been told by otheres that is ridiculous.  Also, I am curious as to when they reconnect and your stoma is no longer there, how do they repair the hole in your abdomen?  Is it stitched/stapled or packed and left to close on it's own?  I've heard differently regarding this subject as well.  I would also be interested in information regarding any other medical options at present.  Also, any advice on what type of pouch to use when swimming, etc.  I've had difficulty keeping mine sealed and dry.

Posted 11/7/2006 2:46 PM (GMT 0)
  I had my ileostomy done on 6/1/06 due to an unsuccessful battle with UC and I am happy to say that I had my reversal done on 9/15/06.  I am very happy with my decision to have the reversal, but I did experience some complications.   I was hospitalized for two weeks after the reversal due to a pelvic abscess and some blockage.  But once recovered, I felt fine.  As for you questions, most people I've talked with including myself has experienced butt burn and itching, this is very common in people with reversal, there are somethings that you can do to help with it though.  The first thing is your diet, stay away from raw fruits and vegetables and spicey foods.  There's also calemoseptine ontiment that works well.  As for the stoma site, I believe that it depends on the doctor.  Sometimes they go in from the original incision.  However, my doctor went in form my stoma site.  When I woke up from the surgery I had a big hole where my stoma was once located and some sutures hanging from the area.  After about three days my doctor closed the hole using the sutures that were left behind.  I had a minor openning which I had to pack and after about a month it was closed completely.  I hope this helps.
Posted 11/7/2006 3:40 PM (GMT 0)
It's a crap shoot on whether or not you would be successful if you reconnect. I know several j-pouchers who have Crohn's and can manage their disease with their pouch quite successfully. You might want to visit www.j-pouch.org for more information. They have an ostomy forum on that site as well. I eat everything and have never had butt burn. From what I gather from others, they all eat everything and prepare for it. Each poucher is different which is why you get conflicting information.

As for the ostomy site, the method of closure depends upon the surgeon. Mine was closed with internal stitches and super glue. Many others have had the open wound method. Your surgeon can best tell you which method he/she uses.

Sue
Posted 11/8/2006 4:58 PM (GMT 0)
Thanks Will, and Sue.

Will i think with U.C. you'll be just fine. so keep me posted if anything changes...

Sue thank you for the web site, I m sure I'll check it out .


later john
Posted 11/14/2006 5:15 AM (GMT 0)

I had my illeostomy on 5/5/06 and the reversal on 7/14/06.  I never really had butt burn, at least not to the extent that some people on this site have had it.  In fact, I have more constipation than diarrhea. 

As for the incision with my reversal, mine was stitched closed. The surgeon closed it through the ostomy site and I did not have to have the large original incision re-opened. He told me before the surgery that he would not know if he could do it through the ostomy until he got in there.  If there had been excessive scar tissue or if he had other problems, he might have had to open the larger incision.

I was readmitted to the hospital several days after discharge ( from the reversal) because of pevic abscesses. I had been doing great but ended up with severe pain and a high fever. After several tests, they determine I had the two abscesses.  I had a drain inserted and spent another 11 days in the hospital.  I've recently been back to the ER because of abdominal pain. It feels like spasms and it's very painful. They did a CT scan but said it looks normal. I see the surgeon later this week in hopes of finding out why I'm having this pain. It just comes occasionally.  Barring some major complication related to this recent pain, I am completely happy that I had the reversal. Best of luck to you and I hope this helps. I remember wanting every bit of information I could find before my reversal.

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