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HELP - My son just diagnosed with a stricture

Hello all, my son is 12, he was diagnosed with crohn's at the age of 5. We have had pretty smooth sailing (only on Pentasa all this time) up until a month ago when he landed in the hospital with his first ever flare. His GI started him on Remicade and he bounced right back. But that drug scares the heck of me for my 12 year old!! He got his second infusion 2 weeks ago and landed in the hospital this week with horrible stomach pains. He had an UGI with small bowel follow through and discovered he has a stricture!! I am so confused as to what to do. The doc says get the next remicade infusion and he will be ok. But lots of reading has shown me that the remicade doesnt promote healing it promotes scar tissue. She is pushing the remicade and not wanting to use prednisone or something to reduce the possible inflammation. I want to try the pred to see if it is inflammation and might reduce the stricture but she is saying no. I just dont know what to do or who to listen to. He is my baby and I hate to see him in pain, it is killing me!!!
Can anyone offer any light for the end of my dark tunnel or share some examples of treatment that helped.I am very glad i found this site and the reading has been very insightful. Thank you everyone.
Hi jtjrmom,

Welcome to the forum!

There are lots of people on here with children that have Crohn's and are very supportive :)
I dont know much about the medication as I was just diagnosed myself - with strictures in my lower bowel. What I know from here is that medication can reduce the inflammation but not scar tissue. If he starts to vomit, that means a trip to the emergency room. Sorry I couldnt be more helpful as I am just learning myself but someone will likely answer your question soon.

Take care and I hope your son feels better soon.

Crohn's 35

Inactive Account
Welcome to the forum! I hear you, loud and clear and I understand how you feel, having the pain I know how your son feels. Remicade is the wonder for alot of people here (unfortunately I am not one of them, became allergic) however being on Prednisone is a love hate drug, you feel wonderful and have loads of energy at the top doses. Prednisone has alot of side effects too, heartburn, jittery, and sometimes leg cramps, depends on the individual. The worst part is long term it can rob your body of calcium and being on antacids do the same. I know he is young and I think he would be the youngest one here. Having a stricture is very painful if he becomes obstructed.

I cannot tell you what to do, none of us can , we are not doctors but we do have experiences. Everyone differs in the diseased areas and medications for them.

Having said that, because I have had this disease and I am a mom, (only my opinion) he could be on both but I would try the Prednisone and get some weight on and get him out of immediate pain, it is a tough call. Some Crohnies here have their fistulas closed and some may have had strictures turn to normal. There is a Remicade link here, I will find it and post it, it may help you in your decision. Lots of Prednisone threads too.

My heart goes out to you, try to keep strong, but it is easier said than done. Big hugs to you and your son! Keep us posted ok?

Here is one you should read http://www.crohnsforum.com/showthread.php?t=9631&highlight=Remicade

Hope this helps.
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To save time...Ask Dusty!
Hi Jr's Mom, I'm glad you are here. I don't have any advice for you except to ditto what Jet and Keona said. The Remicade thread is very positive from what I have read. EJ was dxed at ten last Dec. and we've had no "serious" problems with crohn's since then. Please keep posting someone will have the advice you are looking for. Thanks.


Hi jtjrmom
and welcome

If it was me, and this is only my opinion, I'm not a doctor! but I'm a mum to 2 kids, and if it was one of them, I wouldn't try a biologic just yet! This would be my last resort after exhausting all other avenues.
You're right in saying that the biologics promote scar tissue during the healing process, these have excellent results for fistulas and abcesses, whilst steroids reduce the inflammation, this would be my first choice, to blitz the current flare, and continue with the maintenance drug Pentasa to stay in remission. A short course (maybe 4 months) of Prednisolone would suffice.
Talk to your doc, this is YOUR choice, YOUR child, and YOUR decision, in my personal opinion.
good luck, we're here to support you
lotsa luv
Joan xx


I agree with Astra. I think sometimes we feel we are caught between two worlds (even just as patient, never mind parent of a patient): we feel we know what is right for our body, but a doctor is supposed to be an expert in these areas.

Unfortunately, I think we have all had too many experiences with doctors who think they are gods.... very sad when they are not open to discussions... :(

I am not one to condone "doctor shopping", but there are definite times when it is necessary, and I think this is one of these times. There are lots of options for strictures, and you sound like you have kept yourself extremely informed on those options. As Astra said, talk to your doctor. This is YOUR child, he has the right to the best care he can recieve.

I hope things work for you.
Thank you all for your comments, it is so nice to hear that my ideas and thoughts are not way off track. I spoke with the doctor today to see if she would prescribe an anti-inflammatory and she told me that he was already taking 2 (the Pentasa and the Remicade) and that she would talk to me about starting 6mp at our appt on the 30th, but we needed to keep our 3rd Remicade appt next monday ( which i dont want to do and isnt approved by insurance yet). I have an appt next Friday for a second opinion and the doctor is trying to get approval to send us up to Houston for a visit to Texas Childrens IBD center. I guess it is all heading in the right direction, i just wish she was more open minded. Take care all , and I will keep you posted. Thanks!!
Hey Jr's mom...just wanted to shout out to you. Hug to you! I am sure one of the other parents or people with Remicde can help you out a bit...Good luck...Sue


Super Moderator
Hi jtjrmom,

I don't have any advice regarding the meds side of things but will happily give you my opinion regarding doctors. LOL.

I think it is so important to have respect for the person treating you, your child or a loved one. I find it is difficult to have trust without respect and there would be few other areas in your life that would be more important than entrusting someone with your health/life. If you feel that this the doctor isn't listening to you, respecting your opinion or explaining things sufficiently to put your mind at ease then I don't see any issue with seeking a second opinion. Heck even if you can't put your finger on it and it's just a feeling you have, run with that and go elsewhere. From my perspective I think you are heading in the right direction, you need to be able to trust the people making the critical decisions in your son's life.

Best of luck. I hope things work out for you and your son.