my son newly diagnosed

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alana2000
New Member


Date Joined Oct 2007
Total Posts : 13
   Posted 8/1/2009 7:43 AM (GMT -7)   
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.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/1/2009 8:16 AM (GMT -7)   
Many have gotten great relief from Remicade in healing their fistulas. You might want to let him try it since he seems to never heal completely. Sending healing thoughts and prayers your way.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

KEANO
Regular Member


Date Joined Sep 2008
Total Posts : 76
   Posted 8/1/2009 12:34 PM (GMT -7)   
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. 

alana2000
New Member


Date Joined Oct 2007
Total Posts : 13
   Posted 8/1/2009 6:07 PM (GMT -7)   
My son is very scared. He is terrified of needles but he is also afraid that he will always have to be on it. Did you have other symptoms besides the fistula? That is the only Crohns type symptom he has. In his mind, he would rather live with the fistula but I worry it could get worse and affect the sphicter muscle. Is it possible for the fistula to heal and then be able to come off remicade and it not come back? I really need to hear about real people's experience. The doctor did not tell me all the possibilites and I am scared to after researching it.

KEANO
Regular Member


Date Joined Sep 2008
Total Posts : 76
   Posted 8/2/2009 7:27 AM (GMT -7)   
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

alana2000
New Member


Date Joined Oct 2007
Total Posts : 13
   Posted 8/2/2009 11:57 AM (GMT -7)   
Thank you for your responses. If we go through with this, we have to travel about three hours from home for the treatments. Do you think we should plan on staying that night close by just in case of some reaction? Our medical care at home is not that great for emergencies.
Alana

mysonhascrohn's
New Member


Date Joined Apr 2008
Total Posts : 2
   Posted 8/2/2009 1:19 PM (GMT -7)   
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.

alana2000
New Member


Date Joined Oct 2007
Total Posts : 13
   Posted 8/2/2009 2:16 PM (GMT -7)   
Ok, so now I have spent the last hour researching naltrexone and am excited about that possibility. I will be asking our family doctor about that tomorrow. Does anyone know if anyone have had fistulas healed on it?
Alana

blondee35
New Member


Date Joined Aug 2009
Total Posts : 2
   Posted 8/3/2009 5:33 PM (GMT -7)   
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... http://www.healingwell.com/community/default.aspx?f=17&m=1553894

alana2000
New Member


Date Joined Oct 2007
Total Posts : 13
   Posted 8/3/2009 5:40 PM (GMT -7)   
Our family doctor liked the idea. He said he was going to recommend trying something else before going to remicade and after he looked at all the information I brought him, he said it was definitely worth a try. He said give him a couple of days to work with my pharmacist and then will start it. Now I just have to call the GI and cancel his plans and I don't know how he is going to react to that. I am lucky to have an open minded family doctor. Blondee, I am going to go look now at your son's story. Thank you everyone for your responses and thank you so much mysonhascrohn's for bringing naltrexone to my attention.
Alana
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