Crohn's; fistula; Remicade

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New Member

Date Joined Aug 2009
Total Posts : 2
   Posted 8/3/2009 5:07 PM (GMT -7)   
Hello everyone! I'm looking for some feedback from anyone who has been diagnosed with Crohn’s, has/had an anal fistula and was prescribed Remicade. My 14 year old son was diagnosed with Ulcerative Colitis 18 months ago and went through several medications all without any success (Asacol, Colazal, Xifaxan, Cortifoam Rectal Foam, Sulfasalazine, Flagyl). In November 2008, he was prescribed Mercaptopurine/6-MP (after a round of Prednisone) which seemed to work. Since November, he was put on a low dose of Prednisone in May (20mg for 2weeks, then taped down) because of some evaluated lab results and some slight cramping. Two weeks ago we discovered that he developed a fistula (already had some skin tags) and his GI "re-diagnosed" him with Crohn's. Because of the fistula and because he was just on Prednisone in May, the doctor wants to change his medication to Remicade. After doing some research I understand that Remicade is suppose to be wonderful for healing fistulas and keeping Crohn’s in remission. But I also know that there is a risk of developing a rare, aggressive form of fatal lymphoma. It has occurred mostly in teenage or young adult males with Crohn's disease or ulcerative colitis who were taking Remicade and 6-mp….. I have a teenage son with Crohn’s taking 6-mp. I know it’s rare – but it’s fatal – and I can’t seem to get past that fact. I’m looking for some responses from parents/patients who might be (or have been) in our position and I’m interested in what decision you made. I plan on getting a 2nd opinion, even though I feel very comfortable with his GI at Children’s Memorial, 2nd opinions can never hurt. Any advice or words of comfort?

Julia Hill
Veteran Member

Date Joined Mar 2008
Total Posts : 560
   Posted 8/3/2009 5:57 PM (GMT -7)   
I am so sorry to hear your son has crohn's and is going through so much at such a young age.  I have had crohn's for 30 years with alot of the disease in the perianal regional.  Over the years I to have had numerous abscesses and fisula's.  I was on Remicade for 1.5 years, and it healed a crohns ulcer in the rectum the size of a 50 cent piece, and also closed a rectal vaginal fistula I had.  I was on methotrexate with remicade to protect me from the antibodies.
In my experience the remicade did help my bottom, and I hope it does the same for your son.
Keep us posted!

Veteran Member

Date Joined May 2007
Total Posts : 1220
   Posted 8/3/2009 5:57 PM (GMT -7)   
Hello Blondee35,

Remicade is known to promote fistula healing in most but not all people. Many doctors are now going stright to a "big gun" like remicade (or its sister Humira) in order to limit that damage that can result from Crohn's. The softer drugs are often prescribed when you are in remission as maintenance drugs.

Your son is young and I strongly suggest you see a pediatric Crohn's specialist. They are better be able to discuss with you the risks associated with the various treatments -- drugs and otherwise.

I really feel for you, your son, and your whole family. This is a hard disease to have, but is so sad in one so young! You all are in my prayers. Please remember that the folks who post on this forum are often among the most sick. There are so many that post once, then get healthy and never come back. Also, it seems true that the first couple of years are the worst. Once you find the right treatments, you get healthier and can live a more normal life. So please have hope in the future!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.

Veteran Member

Date Joined Apr 2005
Total Posts : 2346
   Posted 8/3/2009 6:01 PM (GMT -7)   
Good idea on the 2nd opinion. I did that also, even though I totally trusted and liked my gi. I have been on remicade for almost 5 years now...and was on imuran for almost 3 of those years. Then when the report came out that they no longer recommended being on both remicade and imuran, my gi stopped the imuran. I was really surprised that I felt better without it. Remicade has saved my life! I love has given me my life back. I have no side effects from it. I also have fistulizing crohns, and it healed my first fistula completely after about 5 infusions. If I was him, I would stop the imuran and start the remicade. Good luck. Keep us posted on what you decide and how he is doing.

New Member

Date Joined Oct 2007
Total Posts : 13
   Posted 8/3/2009 6:09 PM (GMT -7)   
I answered you on the other thread but we are going to try low dose naltrexone. The part about the lymphoma is what scared me so much about remicade too. I figure we always have that option if the naltrexone doesn't work. It sounds to me like they are having a lot of good success with naltrexone in all the studies. Do you know about the one with Crohn's kids at the University of Penn?

New Member

Date Joined Aug 2013
Total Posts : 10
   Posted 8/6/2013 9:30 PM (GMT -7)   
I know this is a very old thread but Alana2000's son has a very similar history to my 15 year old and I feel similar to her and am considering LDN for my son.  If you get this, can you please share your experience with LDN and how your son is doing now?
Thank you.

Regular Member

Date Joined Sep 2009
Total Posts : 460
   Posted 8/7/2013 6:58 AM (GMT -7)   
Did you ever think about changing his diet?  I was dianosed with CD 2007 in the lower colon and I had two massive and painfull rectal fistulas that surfaced about an inch from my anos and tracked back to my lower colon.   
GI insisted that I go on remicade as he said this is the ONLY way to heal fistulas as large as I had,  and that nothing else will work.  Well, like you, I was hesitant to turn off my immune system, so I did some research and I decided that before going with the hard core drugs, I would try a more natural approach first.   I decided to try the SCD diet approach .  
I dedicated myself to this diet and I followed it with fanatical 100% dedication and without any cheating.   Well, after 3 months on the SCD diet, both my fistulas started to show signs of healing, and all the white mucus that I had in my BMs was gone.  By 5 months, both fistulas had healed so much, the surgeon actually had to remove the setons so they would heal more.  By 7 months on the diet, both fistulas were completely gone, completely healed, and I had no other symptoms from my CD.  The only drug I was taking along with the diet was 1000mg pentassa 3 times a day.
That was in 2007 and I have not had a symptom or a problem from fistulas or a problem from my CD ever since.  Thw surgeon said he had never ever in all his career working with crohn's patients, he has never seen fistulas as large as I had heal without remicade.  He said just keep doing what ever you are doing because it is working for you.
I had a colonoscopy two years ago and there was no sign of any active CD in my colon.  The only thing they found was some scar tissue where the fistulas had healed, but nothing more, no CD. 
I suggest that you read the book "Breaking the Vicious Cycle" which goes in detail about how this doctor cured her daughter of UC with the SCD diet.  This diet is not easy to follow because you have to give up a lot foods like all bread, grains, rice, potatos, corn, processed foods, all foods with sugar, all diary, etc.  It also doesn't work over night and it takes time, but you have nothing to loose by tyring it, and all to gain if it works for your son.
There are many people on this site that have had great success just as I had, so there is a wealth of information to be had here.  Read the book, and see what you think.
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