Crohn's; fistula; Remicade

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?

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!

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?
Alana

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.