You are my GI's- ideas needed

So,"we" are not holding remission on Tacro.Today is her 6th anniversary of this lovely disease, and almost out of tricks. She is at college, in a tear jerking flare, and doc resistant to help from afar. Labs coming, but need short term flare advice. Trying to avoid surgery, and waiting for Vedolizumab. Frequency, urgency, D, no blood yet, cramping, pain, sorrow, you know the drill. Medicine horder, so has Cortifoam for rectal meds, some Pred. I am fed ex'ing Bentyl. 5 Asa's were ineffective, but it has been a long time, is it worth retrying? How much Pred for a short course- she HATES it. Are any Biologics worth trying when she failed Remi? She did not have antibodies to it, and levels were therapudic when it quit on her. Doc didn't expore, assuming other biologics would not work. No need to advise on the surgery route, I am here every day, and know the score, just hoping for short term help as doc is not available. Thanks in advance. Poor kid can't eat, will dehydrate and I will be sitting bedside if we can't find a way to dampen this.

In the meantime, can she be prescribed Librax? That drug helped me with frequency of bowel movements...it let me get a better night's rest. As far as drugs, how about trying Sulfasalazine? It is an old drug, and was replaced by purely mesalamine drugs. I take it because I had a reaction to 5-ASA drugs (except for mesalamine enema, but those are tiresome to use).

What part of the colon is primarily inflamed?

Sulfasalazine DOES metabolize into mesalamine (with the aid of gut flora), but hey, it worked for me. Balsalazide also metabolizes to 5-asa similarly. I hope that different chemical delivery systems might be viable. If she went to a Florida school, I would totally be there for her.

Vedolizumab...This is the first I've heard of it.

Prednisone dosage should be prescribed by her gastro...is there any way she can phone her doc or find a new gastroenterologist near to her college?

She is at UM, my Florida friend, and her gastro is friendly with a top UM gastro. I'll be on the phone first thing, as she has had a visit there, but doc in Chicago has been doing the treatment plans. Hope they don't tell us we have a 2pm appointment time avail. in June... Worth asking about the Librax. She needs pain relief too. . Colon usually left sided , and gets fragile in a hurry. She has never tried Lialda either.
We do have steroid enemas too, but they burn her. She will do them anyway. They will want to rule out CI- diff, but it is unlikely. She reduced her tacro levels too far down I think, and the simmer boiled over. She upped the dose, and we have to get a quick kidney function test too.
Pluet, the Remi worked like a charm for almost 4 years, and then stopped. Dose increase irrelevant, was like giving her a 5k drink of water. That influenced her doc to think other biologics would not work. Not sure why. I get it if there is an allergic reaction.
Gonna be a bossy mommy in the am.

Hi,
Your daughter and I sound like the same person. Seriously. Same age, nearly same history, both waiting for drugs, in college.
What they're doing for me is they put me on Lialda and Uceris extended release. Uceris is this steroid that is usually like prednisone, but they have a coating for it so it just goes in your large intestine. While I'm still flaring and really sick, it's manageable right now, which is good enough until I can start on my medication (which is like Vedolizumab, but is through a trial). No weight gain, moonface, hunger, nothing. It isn't as good as pred, but it has kept me going to classes, which is good enough for right now.
She should really try Humira. It kept me good for 2 years. It may be worth trying once she's managing. It takes a few doses to kick in, but it was great for a while.

Any probiotics?

Generic useris/endecort ordered.( prescription $1000.00 for 1 month. JEEZE.) Hoping for another shot at remission, tho she so hates steroids.
At this point, I should shush up. Just a shock.
Thanks for trying to help.

I too am at college and enduring a flare up. She will probably have to start a new kind of medication if her old medications are not working. That is precisely why I am on Uceris, to help reduce the inflammation of the flare up until my Humira arrives.

She might want to consider a high fiber diet to soften her stools and help her BM's a little bit. Hope she is able to overcome this soon, college can be miserable during a flare up.

Uceris can help. Our GI doctor was able to get us samples so we didn't have to pay $1000/month. Might ask.....

Update. Uceris is beginning to slow things down, still 8-10, with mucus and blood.Scope showed inflammation from rectum to 45 cm, but symptoms were so bad, they were pleasantly surprised that the decending portion looked good. Mostly bad at rectum up, so hopeful that a return to rectal meds can further help. Negative for CMV and cdiff. Blood panel reasonable. Biopsies not back, nor is CMV stain. off the Tacro to clear her system of it. UM GI thinks we should try Remi again, at 10 mgs, and go thru the induction phase like a newbie. No antibodies were built, and she thinks we may not have been at high enough levels( 3.7 when it quit working and they like 7.5 +). Her docs not fans of FT- her Chgo. Doc 's trials failed. The Remi caused soooo many infections, that I am afraid.
Vedolizumab is still pretty far away. Trials closed. Availability locations may be limited. Decisions on administering it not resolved( do infusion centers have to be retrained for adverse reactions, will insurance cover, etc. Saga to be continued. Thanks for all the thoughts, keep em coming!