Crohns since 7 years old

[jonsmon]

My son Jon has had crohns since grade 1 first treatment was steriods and metrotraxate, folic acid,caltrate calcium and vitamin pills which worked for
2 of his flare up's 7 and 9. He has a problem taking his 6 metrotraxate pills as they stick and taste awful but we now put them in capsule and this works well.
He's now on his third flare up starting in summer going to his doctors to figure out why so much blood in stools. They starting out with cortifoam which I think made it worse for 1 month then put him on steriods again which only stopped his urge to go to bathroom. We finally had to take him to hospital for treatment as he was losing to much blood. He's now on remicade which I knew nothing about until now and doing alot better, but still on steriods and metrotraxate. He's going for another treatment of remicade in November and we are all praying that this works but scared too. He's got a positive additude about it all so I don't want to say anything negative about remicade to him.

 

[Angrybird]

Hello and welcome to the forum.

I am sorry to hear your son has been poorly again. Just to confirm he has flared on the methotrexate? Are the docs waiting to see if the Remi works before taking him off it? We do have a sub forum for this which has a great club thread to read from folks who are on this or about to start to get really helpful info about it: http://www.crohnsforum.com/forumdisplay.php?f=58.

We do also have a parents forum so please do check this out as well so you can have a chat with other mums and dads: http://www.crohnsforum.com/forumdisplay.php?f=49.

Will be keeping fingers crossed that he continues to improve.

AB
xx

 

[jonsmon]

Thank you for the reply. No they are going to keep him on metrotraxate and slowly take him off steriods. He had a colonoscopy last week and they found out that he also has colitis so they figure that the metrotraxate is still working for the crohns or something like that. But I guess is all depends how his second treatment goes.

Jonsmom

 

[Angrybird]

Perhaps ask the docs to clarify this for you. To me it looks like they keeping him on a med that he has flared on so how can it be considered still effective? Colitis is just another way of saying that the inflammation has been found in the colon which can occur with active crohn's.

 

[jonsmon]

you are soo right and we will be asking again about this drug as he's been on it for 5 years.

 

[Angrybird]

Keep us updated on what they say hun.

 

[David]

Hi there and welcome to the community. I'm so sorry to hear about your son, that must be so hard

I can't agree with Angrybird more. Please connect with the other parents in the Parents of Kids with IBD forum she linked you to above. They're an absolutely amazing group and so very knowledgeable.

Out of curiosity, have they tested him for c.diff through all of this? People with Crohn's end up with it far too often

All my best to you, your son, and entire family.