my son newly diagnosed

I have Crohns which is in remission.  My 14 yr old son has had some different health problems and has had an ongoing peri-rectal fistula, for which he has had four surgeries and it will never completely heal.  They have worked him up for Crohns five times and could never find it.  We were sent to a new GI and he said it has to be Crohns.  He said there is a 2-3 % of people with Crohns that the only symptom they have is fistulas.  So they want to start him on Remicade.  I am really nervous about this, especially after reading about the rare lymphoma is some teen boys after being on Remicade.  I also don't like the idea that they said its possible that he could not get off of it.  He also has idiopathic intracranial hypertension but his doctor for that said he did not think that Remicade would make that worse.   So I am trying to make a decision and they want to start this on this coming Thursday.  Any advice?  I am looking for any input or experience similar to this.

Hi Alana,

I had fistuals just like your son.  I was put on every sort of medication, until finally went on Remicade.  After about the 3rd. Infusion my fistula healed up and thank god has never returned.  That was 3 years ago.  Im still on Remicade every 8 weeks and I can honestly say I have had no side effects from it.  Good luck with your decision, but in my opinion it is worth trying it, and im sure your son would welcome some relief from his fistula. 

Hi Alana,

I have crohn's for 30 years.  I had a bowel resection about 20 years ago.  I only started having fistulas about 3 years ago.  To be honest when they did clear up I asked my doctor to take me off remicade cos I figured they would not return.  I did not have treatment for 2 months and lo and behold the fistula returned.  So for me I do not want to take that chance again.  I feel for your son cos he is so  young and then also being scared of needles.  It's really a decision that in my opinion you will have to make for him as he is so young.  Keep us posted. Hope this is of some help to you.  Take care

My ex wife and I recently had to make the decision to use Remicade or not for my 13 yo son. He has a different version of crohn's, near the terminal ileum with fistulas, strictures and abcesses.

After doing all the reading about Remicade, both good and bad, we decided to use low dose Naltrexone. LDN seems much safer and as effective, though there are no long term studies but some short ones. It's an FDA approved drug that's off patent (generic) drug and it's use is off label. 20-25% of ALL prescriptions written are off label. One example: Using Methotrexate for Crohn's for children is an off label use.

It's only been 2 weeks and he's at the end of tapering off steroids. So we won't know if it really works for a while. If it doesn't work we will use Remicade.

It's a difficult decision.

I completely agree with you about Remicade - scares me! I would be very interested to hear what you doctor has to say about Naltrexone - please post after you've had your doctor's visit! To read my son's story go to this post... https://www.healingwell.com/community/default.aspx?f=17&m=1553894