remicade use on teen boys for enterovesical fistula

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boyssoccermom
New Member


Date Joined Aug 2010
Total Posts : 3
   Posted 8/24/2010 1:44 PM (GMT -7)   
My teen son was just diagnosed with Crohn's 2 1/2 months ago. He is currently taking 6mp and prednisone. They discovered two weeks ago that he has an enterovesical fistula (connection between bladder and small intestine). although his 6mp hasn't fully kicked in the drs want to start him on remicade to close it. I feel that it is too soon to start something so strong. what do you think? Any experience with this?

tsitodawg
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Date Joined Sep 2006
Total Posts : 845
   Posted 8/24/2010 3:30 PM (GMT -7)   
While it is sad to see a person so young have this disease and issue, you have to realize that your doctors are trying to help him. The best medication out for closing fistulas is remicade and it is better to get the fistula healed before it does any more damage. At this point there are not many other medicinal routes to take and surgery is the next option if it gets bad enough. I have been on remicade for a long time and although the side effects can sound scary, you have to realize that not all of them are going to happen. I read the side effects on my pain medication the other day and if I did not know better I would have been scared out of my mind at the possibilities. Your son is very lucky to have you as his mother and your love for him is showing through. If you trust your doctors and their intentions with his treatment, then you should probably trust them when they want to use remicade. He does not need to be on it forever yet. Many people have gone on remicade for a short period to heal fistulas and then gone off of it. You never know, it may end up being the medication that puts him into remission and lets him have his childhood back.

Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 8/24/2010 4:47 PM (GMT -7)   
Tough decision. He could try Flagyl first. It can be quite effective against fisulas. The other option, with which your doctors are likely to be less familiar if you are in the US, is a course of total enteral nutrition (full liquid diet for several weeks) which can sometimes close fisulas.

Dunchad
Regular Member


Date Joined Sep 2009
Total Posts : 36
   Posted 8/24/2010 9:22 PM (GMT -7)   
I had the exact same problem. Went on remicade in 02. Kept the problem under control for yrs. But I did end up having surgery April 20th. I'm amazed how much better I feel. If the fistula can't be closed with meds, at some point surgery will be needed. Towards the end I had a constant UTI no way to live.
Diagnosed Crohns 02. Just had a resection April 20th 2010. Two sections removed had a fistula into the bladder. Also have a temp ostomy. GI said I could stop the 6mp, but going back on remicade.

boyssoccermom
New Member


Date Joined Aug 2010
Total Posts : 3
   Posted 8/26/2010 3:31 PM (GMT -7)   
Thank you so much for you help! The dr. wants us to have the first infusion of Remicade tomorrow morning. Please pray that this goes smoothly. Still really scared just want to do what is best for my boy!

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 8/26/2010 3:47 PM (GMT -7)   
I started on remicade at 18. It was a miracle drug for me, but stopped working after about a year. I never had any negative side effects.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 
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