Out of remission and overwhelmed

[kernelmom3]

My son (19 yrs old) has been in remission since he started Remicade right after being diagnosed almost 5 years ago. He started college last fall and lives in his dorm (private) about 1 hour away. In late January, he developed a fistula and an abscess. They were able to place a drain in the abscess and he was put on antibiotics. It has been 8 weeks and the abscess has gone away, they’ve capped the drain so it’s just a “place holder”. He still has the fistula and are worried the abscess could come back and they’d have trouble putting the drain back because it was in a very tough area to get to. He’s getting Remicade every 4 weeks for now in hopes that the fistula will heal.

He is still on antibiotics and is not sleeping well because his drain bothers him. He’s saying he doesn’t feel human because of the “thing coming out of him”. He’s having trouble keeping up with homework because he’s sleeping so much to make up for all the sleep he ISN’T getting at night. His options are to leave the drain in and hope the fistula heals with increased Remicade or take the drain out while we’re doing increased Remicade and hope the abscess doesn’t come back or resection. They’ve told us that he may need a temporary ostomy if he goes that route but won’t know until they open him up.

Honestly I’m so overwhelmed with all this and it has been a roller coaster for the last 2 months for all of us. Any thoughts, advice, or similar experiences would be much appreciated!

 

[crohnsinct]

No similar experience on the Fistula front but I have a daughter in her second year of college who has bee in somewhat of a flare for three years now and she is across the country. They have just declared Remade a fail for her and they are working on getting approval for Entyvio. While waiting for Entyvio they are using Tacrolimus as a bridge therapy because she has been on steroids too much the past 18 months. While reading about Tacro (yes I read the scary stuff) I did happen to read that Tacro has a high success rate with healing fistulas. Not main stream therapy but thought I would throw it out there.

 

[Jenn]

So sorry to hear, that is so stressful and being away from home too. Honestly, it seems Remicade is failing. Has he been tested for levels and/or antibodies? May be time to start a different med. He's not on a combo with Methotrexate? Or try steroids in the short term. Hope he gets back to remission quickly.