Multiple Crohns Surgeries now with ileostomy

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august4
New Member


Date Joined May 2009
Total Posts : 5
   Posted 5/11/2009 11:05 AM (GMT -7)   
Hello,
 
     I am new to this site.  I have reviewed many of the responses to other topics and it has been very interesting reading.  I had Crohns' surgery last August.  There were complications and I ended up having 4 surgeries in the span of 2 weeks.  This has caused alot of scarring and I came out of it with an ileostomy.  I am being told that my reversal will not be an easy surgery, I believe because of all the scarring.  The reversal will probably happen this Fall.  I have 2 questions.  1) Has anyone had a situation similar to mine with the surgery, did you have a reversal and who did your surgery?  2) I am being asked to use Remicade to control my crohns(I am fine right now and because of the side affects, scared to try remicade).  Has anyone used Remicade?
 
Thank-you to anyone who may be able to comment! 

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 5/11/2009 11:48 AM (GMT -7)   
august4--welcome to the forum...I am glad you've been reading the posts, they are full of some good information.

I, too, had a temporary ileostomy from surgery complications. I was able to have my ileo reversed after three months, when everything had healed properly, as determined by my ColoRectal Surgeon. He also did all the surgeries before and after that...it was just the luck of the draw that I had complications that one time:(

I also have a lot of scar tissue from many surgeries and did not have any issues with the reversal. I was home recovering within 3 days and travelled home for Christmas two weeks later. After saying that, everyone IS different and recover in different ways/speed!

Unfortunately, I rejected Remicade, but was able to reverse some Crohn's problems while on it, but once off they came right back. It is a scary drug, as they all are, so do your homework and make sure you are comfortable with the drugs you put into YOUR body.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 5/11/2009 7:20 PM (GMT -7)   
August4,

Welcome to HW.com!! I too have CD. I have had multiple resections prior to my permanent ileostomy, and therefore, I too have a lot of scar tissue/adhesions. My CD kept coming back after the resections. Fortunately, no hint of it since my perm. ileo in 1984.

Remicade was even born yet when my surgeon made the decision that meds were not doing their job for me. Of course, about the only thing that even made the smallest difference for me was prednisone - oral, enemas, suppositories --- all at the same time. I pushed my luck and waited until I was unable to keep anything down to have my surgery and was pretty malnourished by then. My recovery took longer than average because of the shape I was in prior to surgery.

Please do your research and ask these questions to get input. I agree with Ohio, it is your body and you have control over what you wish to put into it.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


august4
New Member


Date Joined May 2009
Total Posts : 5
   Posted 5/12/2009 10:54 AM (GMT -7)   

Thank-you peggy113 and Ohio76!  Glad to hear all is going well with you.

It is good to hear from others who have similar situations.  It does not make me feel like an island.

Ohio76, how did your reversal go?  Were you happy with the result?  Did it take you long to adapt back?  Sometimes I feel like I would like to keep the iliostomy because I have gotten used to it.  Not really...guess just adapted to it. : )  They wanted to wait a full year before even considering the reversal.


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 5/12/2009 4:34 PM (GMT -7)   

Well, that's a funny story...a year and 3 months ago I had a proctocolectomy w/permanent ileo!!  I did go a little while after the reversal but my Crohn's continued to get worse (abscesses/fistulas) so I begged for another one...well not really, my docs (GI & CR Surgeon) both laughed at me when I said I'd had enough... That temp ileo lasted 7+ years until I went the permanent route. 

I think the 'temporary' ileos open our eyes to life with them so our minds accept them better and make the final decision easier...at least I know it did for me!!  Whatever decision you make will be the right one for you...hang in there:)

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