Did anyone experience their fistula getting worse on remicade?

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ginger71
Veteran Member


Date Joined Nov 2005
Total Posts : 722
   Posted 9/25/2007 10:59 AM (GMT -7)   
I just had my 4th infusion last week, and over the weekend, I got really sore and the fistula(the one that formed after my 2nd infusion) is bleeding more frequently and draining a lot-changing my gauze every hour. Drainage is greenish yellow and a bit sour smelling.......
 
Does that seem normal? My GI was not available at my last appt.so I did not get to see him but when I saw him after my 3rd infusion he was concerned it might not be working at that point.
 
Opinions? Similar experiences?
 
Thanks,
Ginger
36 year old female. Dx'd and undx'd a few times. Was just redx'd again 04/2007.
History of rectal abscesses and fistulas (28 surgeries including abscess I & D, exploratory surgeries, 2 C-ton drains and 1 fistula plug) Count does not include self bursting abscesses.
1st Remicade infusion 6/5/07.  Lots of joint pain, and a new fistula since the 2nd infusion 6/19.
Praying I'll get better soon so we can have a baby.
Ginger :)


binot
New Member


Date Joined Sep 2007
Total Posts : 4
   Posted 9/25/2007 6:00 PM (GMT -7)   
Ginger,  I am Binot.  My boyfriend has crohn's.  He has pulled away from me suddenly after his infusion last week. 
 
Talk to me.  Do you have depression?  Does crohn's affect your sex drive?  He told me last week he was melting down, that some of his symptoms are worsening, that he is barely holding it together, and has completely pulled aways from me.  He was dx'd around 1 years ago and has had 2 resections.  Any insight you can give me would be greatly appreciated.
 
By the way...you sound very courageous and hopeful. Thanks...hope to chat.
 
 

ginger71
Veteran Member


Date Joined Nov 2005
Total Posts : 722
   Posted 9/26/2007 4:40 PM (GMT -7)   
Hi Binot-
 
Don't be discouraged. Remicade makes me very cranky-I get joint pain and headaches and it makes me feel old-I take benydryl a few nights after to try to alleviate some of the symptoms. It also gives me a lot of gas and gas pains so you don't feel very much like being touched!
 
It is very hard to deal with fistulas and have a healthy sex life,IMO. My H & I just did it last month for the 1st time since Oct. 2006! TMI-sorry. but when you have an open sore in your butt that is draining, you don't feel very sexy and being a woman, it is very close to the area you use so it hurts sometimes. That can make a young person very depressed. That was a big part of my depression.
 
Try to talk to him but if he won't open up, just be there. My husband leaves me alone when I am really upset or sad but he tries to make me laugh and do little things like get me something good from the grocery store to cheer me up.
 
Feel free to email me-it's in my profile if you want to ask any questions.....
 
Best to you and your BF!
 
Ginger :-)
36 year old female. Dx'd and undx'd a few times. Was just redx'd again 04/2007.
History of rectal abscesses and fistulas (28 surgeries including abscess I & D, exploratory surgeries, 2 C-ton drains and 1 fistula plug) Count does not include self bursting abscesses.
1st Remicade infusion 6/5/07.  Lots of joint pain, and a new fistula since the 2nd infusion 6/19.
Praying I'll get better soon so we can have a baby.
Ginger :)

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