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If small bowel and colonic activity - is Entyvio a good choice?

Hi -
My son has already failed Remicade, Humira, and Stelara. They are looking at Entyvio as a possible option. First we are doing EEN, budesonide, and my hope is that he'll go into remission and we can continue on with Stelara. Should that fail, they are considering entyvio +- diverting ileostomy.

My question is with everything that I"m reading, Entyvio appears to work best in the colon. But my son has active disease at the terminal ileum and cecum mainly. So what happens to his small intestine if we do Entyvio?

We are planning on scopes in July after EEN. He did have an MRE. The last 4-5cm of terminal ileum are bad, so they are saying they could go just up from that for the ileostomy. We'd like to avoid that if possible. But not sure the Entyvio alone will do it.

Seems like the best bet would be Stelara with Entyvio, but I'm sure insurance won't go for that.

Does anyone know if there's success with Entyvio in the small bowel/stomach area??

Thanks!
 

crohnsinct

Well-known member
Hey there! Back in the parents section I was asking where majority of his disease is. So it is small bowel. And he is on Stelara now? How long has he been on it? I ask because it is a very slow action drug but it does have much better success rate in small bowel than in colon. Entyvio has better success in colon than small bowel.



O has disease in T.I. and colon but her colonic disease is the real drama queen. The small bowel is a supporting actress. They are having trouble finding a drug that will treat both areas. But since it is her colon that is refractory to all drugs and we haven’t tried Stelara yet they are talking about colectomy to get rid of the problem child and then hopefully treat TI by continuing with Humira or switching to Stelara.

Sorry I know this isn’t helping other than to say you are not alone.

So back to your question Entyvio is not known for it’s success with the small bowel although it does sometimes work. I think it’s success with the colon is even pretty low at like 40%.

O got two biologics approved. She is on Entyvio for her colon and Humira for her small bowel. It helps if one is infusion and one is injection because then one goes through pharmacy benefits and one through medical.

Neither drug is working for O right now and we are also thinking of doing a round of EEN to heal things up and then see if Humira can take over from there. We had to do this years ago with Remicade. It just couldn’t take on her disease burden but once we healed things with EEN, Remicade worked like a charm.
 

crohnsinct

Well-known member
I don’t know a lot about T.I. surgery but I am wondering why they can’t remove the damaged portion of the TI and then connect the healthy part to the colon. Is this a permanent diversion or are the hoping temporary to rest the colon and then reconnect later.

I know you are at the beginning of these discussions and your head is probably spinning and you may not have all the answers just yet.

I know in general we parents here tell others to make sure we see pediatric docs and I totally agree with that but when it comes to surgery and especially more advanced IBD surgery there are fewer pediatric surgeons who specialize in bowel surgery. I have been encouraged by our old GI to get three opinions before doing any surgery and he suggested we go to a well established adult center where they have dedicated IBD surgeons as they have seen a lot more cases and might come up with an option the pediatric docs might not have thought of. A little easier for us with O as she is 20 but I would still recommend it to anyone. I am even hoping the adult GI’s at one of these centers might have a suggestion med wise. For instance a lot of them are using tofacitinib now and I am wondering if this might be an option for O. Pediatric GI’s are starting to use it now also. Not sure how I feel about it but I would at least like to hear more about it.

you might also ask about getting a second opinion at a pediatric IBD center that has a lot of experience with surgeries (if your center doesn’t). We are at a pretty major hospital and I was surprised at how few surgeries they do there and will be seriously considering the benefit of staying at a hospital she is familiar and comfortable with vs going to a major center that might require a flight and staying out of town for a while.
 

my little penguin

Moderator
Staff member
If surgery is on the table children’s hospital of Cincinnati has one of the best colorectal surgeons in the world not just US
Treats adults and kids
Prior to d of crohns they were looking at rectal surgery for ds and this doc was the best of the best
Good luck
 
Sorry to hear what you’re little one is going through. I have been in entyvio for a year (I’m an adult) for aggressive Crohn’s that started in small intestine but moved on to large within months. It has kept systemic inflammation under control (taking over from remicade which I couldn’t tolerate) but has struggled to get intestinal inflammation as measured by faecal cal protection to anything near normal. I also had an endoscopy after six months on entyvio which showed mild issues in stomach which they said was gastritis and as I don’t drink, take cocaine, antibiotics or nsaids is possibly the Crohn’s.
So I can’t give you a ringing endorsement for the entyvio, on the positive side it’s much nicer in terms of side effects and seems very low risk around Coronavirus. If you go for it I would recommend keeping an eye on the FCP which is easy as stool test not intrusive.
Good luck
 
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