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bac52
New Member


Date Joined Jan 2009
Total Posts : 5
   Posted 1/25/2009 10:50 AM (GMT -7)   
My son was diagnosed with Crohn's of the Terminal Illium aprox 1 year ago. Was traeted with pentassa for about 1 year, also a surgical procedure to repair a fistula in the rectal area. He most recently was put on 6mp because he is continuing to develop absesses in the rectal area . I believe that we have good doctors care, I wish i could remove the disease from him. The 6mp is new to us and dont know that much about it. Has anyone had the experience of a family member going through similar circumstances with regards to the absesses and fistulas being helped by this medicine or any other. Thankyou

patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 1/25/2009 1:10 PM (GMT -7)   
I went through a year's worth of surgeries for fistulas and abscesses before they even figured out I had crohn's.

The only medicine that cleared up the issues was Remicade at that time. I failed 5asa's, 6mp's, and steroids... Within about a month of my first Remicade treatments I was able to notice the fistulas/abscesses healing, and in another month or two they were gone, and I felt well enough to go back to work full-time. Remicade is one of the "big guns" though, so it merits serious consideration. I never had any particularly bad side effects, but many on here have.

I wish you and your son the best of luck as you research and soul-search for your answers! Welcome to Healing Well.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds
'cade stopped working in '08 and I've been scrambling ever since.
Noticing a real difference with a Gluten-Free diet.
Currently on:
Probiotics, Digestive Enzymes, and Prednisone
Soon to Start:
Cimzia, acacia fiber supplement, and L-Glutamine


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 1/25/2009 1:45 PM (GMT -7)   
Hello Bac52,

Welcome to the forum! I am so sorry to hear about your son! You will find lots of great information on this site as well as very caring people with lots of experience.

I got my first abscess only a few years ago and I am hoping this chronic disease is finally getting under comtrol. It seems to take a couple years after the start of problems to find the right combination of treatments. As you will see from the posts on this forum, the disease is different for everyone and the typcial case sees periods of problems and remission throughout your life. Changing meds is not uncommon. The good news is that drug therapies have greatly improved in the last several years and more is in the pipeline. They haven't found a cure (yet) so don't believe any "miracle cure" product claims!

If your son is continuing to get abscesses, the disease isn't under control. As Patientspiders said, Remicade and Humira are better at controlling abscesses and fistulae. What other treatments has your doc discussed with you? Have you tried other drugs? Are you seeing a gastro-intestinal (GI) doc who specializes in Crohn's disease (CD)? Your colo-rectal surgeon really needs to be experienced with Crohn's -- not a general surgeon. Experienced docs are very important because we just don't heal the same as non-CD folks. If not, I stongly suggest you go see one.

Take care!
Diagnosed early 2007 with rectal Crohn's.  Several peri-rectal abscesses and two fistulas with setons.  Allergic to Remicade and Humira.  Currently on 6MP.


bac52
New Member


Date Joined Jan 2009
Total Posts : 5
   Posted 1/25/2009 1:58 PM (GMT -7)   
Thankyou fallcolors and patientspiders. I am not use to not being able to fix things for my children. He is a young guy always stong and healthy. Probably mis diagnosed for a few years now. Through Mt. Sinai, hospital found a group specializing in Gastro/Crohns along with a top color-rectal surgeon as well. Its the trial and error part of treating this disease that is frustrating to watch. I am glad i logged onto this site, it seems like there are many people in the same boat. Is there anyone that has had bad side effects from 6mp? Keep the info coming its well appreciated!

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 1/25/2009 3:15 PM (GMT -7)   
Sadly, difficult and mis-diagnoses seem to be part of CD. Please don't focus on the "what-ifs" of the past and look foward. Things will become more managable as you learn more about CD. Once you become familiar with symptoms and get a few experiences under your belt you will be better able to handle whatever comes at you.

Use the "Search" tool at the top center of this page to search for 6MP. There have been many posts because it is a common CD drug. I've been on it since summer and have had no negative effects that I can tell. It is an old drug -- it has been used for many years for other medical conditions and has been well studied and documented.

I am really glad you are in with experienced docs! I got off to a bad start -- very nasty indeed. Two incisions that were totally unnecessary and a huge cellulitus infection. Unfortunately, I am allergic to Remi and Humira. I think they are starting to use remi and humira in children -- one theory is to use the "big guns" to get the disease under control as quickly as possible in order to cut down on the damage that can result. The other theory is to start on milder drugs and work your way up to what works. The later takes time. I prefer the first approach because I personnally detest abscesses and fistulae!!

Don't be shy with your docs. Insist that they answer all your questions and discuss options with you. I hope you find something that works ASAP!
Diagnosed early 2007 with rectal Crohn's.  Several peri-rectal abscesses and two fistulas with setons.  Allergic to Remicade and Humira.  Currently on 6MP.


bac52
New Member


Date Joined Jan 2009
Total Posts : 5
   Posted 1/26/2009 2:31 PM (GMT -7)   
Thanks again FallColors and patientspiders. We headed out this morning to NYC to take care of most recent absess.Doc will see him back again in 10 days to make sure it does not lead into fistula? Surgeon is crohns specialty and Gastro is as well. Wants to take him as a matter of sequence (least strong to strong) from pentassa into 6mp before trying remicade. Thanks for your responses!
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