Need Advice. Please Help.

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butterfly321
New Member


Date Joined Dec 2004
Total Posts : 4
   Posted 2/3/2008 2:27 PM (GMT -7)   
Hi Everyone!
 
I had surgery in September for a stricture.  I developed a fistula on my lower abdomen.  While in the hospital I got Jaundice from blood transfusions and than got a staph infection that went to my lungs and put me into the intensive care unit.  They were not sure if I would pull through since they had to put me on a breathing tube.  I was there for 2 weeks in intensive care with the breathing tube.  All together I was in the hospital for 10 weeks.  I was released in December and was told the fistula would heal and stop draining in a week.  Well it is still draining.  Now I have developed drainiage out of my vagina.  The doctor said the fistula in my abdomen made a tract to my vagina becasue there was too much stuff coming out and it could not all come out one area.  The doctor than had me have a fistulagram and the radiologist put a tube in the fistula to help it drain properly and make my insides healthier so they could do surgery to fully repain the fistula.  Well it is still draining more out the abdomen and hardly out the tube that was put in my abdomen.  It did help the drainage out the vagina.  It does not drain much out of there.  Now they want to put a second tube in to the abdomen to help the drainage. 
 
I cannot go out only to the doctors and hospital because of the drainage.  I will have to wait at least 2 months for the inside to heal before they do surgery.  What I need advice about is should I get a second opinion?  I am so confused and unsure of what to do.  I like my surgeon and he is great.  He always says my case  is complicated and I mystify him. 
 
Please give me your opinions.
 
Janet

trickynikki
Regular Member


Date Joined Jul 2003
Total Posts : 481
   Posted 2/3/2008 2:59 PM (GMT -7)   
Butterfly,
I'm sorry, I don't really have much experience with fistulas, but I wanted to wish you luck with the situation.  It sounds like you've been through an awful lot!  Also, if you're thinking at all that a second opinion might be helpful, you should get one.  It's your life, and your health, and you should have all the options available to you.     
~Nikki


jdiane
Veteran Member


Date Joined Jan 2003
Total Posts : 1131
   Posted 2/3/2008 3:03 PM (GMT -7)   
I'm a strong believer in second opinions. Can't hurt really. Another pair of eyes is a good thing. Just to make sure, you are seeing a colo-rectal surgeon and not a general surgeon, correct? If there is a CCFA chapter in your area, you may check their website for member physicians. Generally, those Docs that become members have a special interest in IBD. Good luck to you and I hope you begin to heal soon!

Also, what kind of treatments are you currently doing, biologics, immunomodulators?
 
 


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 2/3/2008 5:35 PM (GMT -7)   

Hello and I too am so sorry for the long ordeal and the pain you have been through.  I know all about ventilators and how hard it is to be on one.  You have my empathy.  I am glad you did recover.
Yes get a second opinion if you feel that is what you want to do.  You are your own best advocate so do not hesitate to take charge of your care.
Please keep us posted and know we are here for you.
Kitt


 
Kitt, Moderator: Anxiety ~ Panic  ~ Crohn's
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patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 2/3/2008 6:08 PM (GMT -7)   
I feel like all I ever talk about on here is Remicade... but jeeze. I went through hellish fistula and abscess problems for two years... with various tubes sticking out of various places that no one, especially a young woman, wants to have tubes! I can sympathize with your pain, and with your frustrations. There were times during my fistula and abscess days that I truly did think I was going to lose my mind if life didn't go back to some semblance of normal. Hang in there!

--Yes, I would definitely get a second opinion - and not just from a colo-rectal surgeon, but from a GI as well. Your problem might be "systemic"... mine sure was. They could have wound tubes through my entire body until kingdom come - and I don't know that it ever would have gotten better without the Remicade. Have you taken Remicade or Humira? The Remicade allows your intestines to heal, so that the source of the drainage can heal, and then the whole happy domino effect goes from there.

Best of luck to you... you'll get through it.
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