Search results

Our case was a little different. E started on remicade only (no steroids or een), and after a few months she was getting sicker so we added een, and that wasn’t enough either, so then we upped her remicade dose and added Mtx and budesonide (and a few days of IV steroids) and she finally started...

Hooray! Hope everything goes well this week. Enjoy sleeping in your own bed!

Oh man--30 days is so much time in the hospital. But I'm so glad to hear that the latest attending is taking things seriously and talking with her GI. Hang in there!

My daughter needed semi-elemental formula; she used the adult version of Peptamen 1.5. She tried Peptamen Jr. first but couldn't tolerate one of its ingredients.

Great to hear about the EEN. When E was sickest, her body couldn't handle Pediasure or Ensure--she had pain and nausea after trying to drink them. She was OK with Peptamen, though, so I agree with MLP about trying some semi-elemental or elemental formulas.

So sorry to hear this. I really hope that the TPN and EEN give her some relief, and that her doctors figure out a good long term option for her.

Thinking of you guys. Thanks for keeping us updated--I hope the c. diff results come back quickly!

One thing they could still try while she's inpatient is an NG-tube. You might as well take advantage of her being there already for the next few days! It really seems like her body can't handle food right now; every time she goes back to food she regresses immediately. I can't figure out why...

So happy to hear this--thanks for the update!

OK--I'm not a doctor, and I'm not there, but I would be very wary of agreeing to surgery right now. The doctors who have seen O have been all over the map with their diagnoses and treatment suggestions. Heck, until 2 months ago, her own GI called all her symptoms IBS despite obvious flare...

^^^ In agreement with the committee. If she did EEN it would be for nutrition, not treatment (although she might get some benefit), and elemental EEN would be easier on her gut than the currently allowed "eating for comfort." I would ask for a trial of elemental EEN while you're already there...

Glad that her weight is up! I would encourage you to talk to her doctors about the possibility EEN after she goes home. Elemental or semi-elemental formula might really help her if she's not absorbing much right now. Doing an NG tube at night is really not as hard as it seems; after a couple of...

So sorry to hear this. I really hope that TPN (or maybe elemental EEN via NG tube?) will give her body the nutrients it needs so that she can start healing. Hang in there.

That's great that everything else looks good. And yes, I'm sure that your doctor wouldn't let you go today if she thought there was any immediate risk. I do wonder if your doctor will want to do an MRE next to get a better look at things. Anyway, I would just have your daughter be careful about...

My daughter has a stricture too; hers is due to "residual wall thickening" created when the most damaged part of her small intestine healed and scarred over. It's only a few millimeters in length, but it has led to a couple of partial obstructions, along with one full obstruction that required a...

That is great news--thanks for sharing!

Welcome to the forum, but sorry that you have to be here. Thanks for sharing your daughter's story. I also have a 16 year old daughter with Crohn's who was diagnosed when she was 12. A few things jumped out when I read your post. First, I think it's great that you and your daughter were...

You all are in my thoughts. Really hope the new antibiotics help.

Hope the appeal works. I have also heard anecdotal evidence about people having trouble when they switch from Remicade to the biosimilar.

:ghug: