Nothing Is Working

i'm in severe pain, almost throughout the day but especially in morning and evening hours. drugs are in my sig, i meet with my GI tomorrow where I intend on letting him know how I feel about his treatment of my latest flare (he did a reverse taper of prednisone basically, refuses to let me try uceris even though i have them sitting in my medicine cabinet). I was put on cortisone enema's last week, they help a bit at night and I have been able to retain them for 3+ hours, most of the time through the night. I'm getting a colonoscopy friday but really can't deal with this pain much longer. Even today i've eaten nothing but some tea and i've still gone 4 times today with pain and blood.

we did bloodwork and samples last week but there was no callback indicating they didn't find anything bacterial/cdiff.

edit: oops didn't add sig

"drugs are in my sig"

nope !

i seriously think my doctor messed up on prednisone dosing. he started me on 20 then upped it to 30 and then 40. had he started me at 40 or 60, maybe i wouldn't be in this situation.

right now i'm actually hoping they find some kind of bacterial infection or cdiff which could explain why prednisone isn't working. as for humira i want off of it, it's not working for me and pointless to take if it's ineffective.

haven't tried remicade, figured if the humira didn't work, neither would that. my GI has mentioned cimzia, but again, i don't see that working when humira has basically failed. '

my weight continues to drop, i was 187 in feb, i'm 164 now.

"haven't tried remicade, figured if the humira didn't work, neither would that. my GI has mentioned cimzia, but again, i don't see that working when humira has basically failed. '

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You need to try it dude. All anti-tnf work differently from one another.Where one works, one might not and vice versa.

It's your call though. It's not like I'm telling you try a chocolate cheese cake as opposed to strawberry one...these are serious meds.

You need to eat! Eating nothing might be making you worse.

i had been taking bentyl, it did little if nothing to help. i'll keep trying it but it's been something that doesn't seem to help at all for this particular flare. it makes me think i might be dealing with something else in addition to the UC, wish my lab results would come in.

i'm taking my vsl#3 packet nightly before bed, not sure if that's optimal or not.

today i've really kept away from food, and the cramping has subsided alot. haven't had to go either, so maybe my system will finally get a bit of a break

he wrote me a 90 day script for the uceris and i got it from express scripts. i have possession of it, but he doesn't want me taking it now. it's incredibly frustrating.

paleo i primarily ate lean ground beef, applegate farms meats, and chicken breast as well as tuna. my condiment of choice was primarily mustard... i'd also have banana's to snack on, sometimes with some almond butter. as well as paleo baked goods (which i have stopped the last couple days because I think almond/almond flour might be hurting me).

Today i decided to incorporate some lactose free cheeses, cheddar and swiss to my diet to try and at least get some kind of calories in me.

I'm also drinking coconut milk and coconut water as well as tea. I really don't think diet is making a single difference, i'm still in significant pain and really would be interested in what my lab results say. maybe i do have cdiff, or a bacterial infection... i kind of wish i did so at least we could have some sort of explanation why my current treatment isn't doing anything...

Docs have never gotten in my way of self-medicating without their permission, assuming I could get my hands on them (eg worm therapy, pred from mexico OTC, etc)... Granted, Its ghen incumbant on oneself to weight the options, risks, etc, but most GI's are 5 minute wonders whose knowledge of you is about 0.1% of your knowledge of you.

Well, if you're in MA, medical marijuana is now legal! Although if you're in MA, I can give you some better recommendations for docs. Yours sounds beyond obnoxious.

I would see if Remicade works for you. It's been less than a week since my first infusion, and I've started improving already (can't wait for the second loading dose in a week). And honestly, I would probably just take the Uceris ... I really don't understand why your doc is insisting on systemic prednisone when Uceris is essentially the same thing, but better able to target your colon.

As for food, I think I'd scrap paleo and just focus on whatever you can keep down. I'd recommend lots of juice, Gatorade, Jell-O, maybe frozen yogurt. I find it very difficult to stay hydrated during my current flare, so I prefer to drink ginger ale instead of water, since it tastes better.

I hope your appointment goes all right ... while I hope you don't have to be hospitalized, it might be the best option if you're in so much pain!

Did Humira ever help you at all? If so, DEFINITELY switch to Remicade. If you've demonstrated a response to anti-TNF, even a small one, then you may be able to get a better response from a different one. In particular Remicade is usually much better for UC than Humira.

I think you are hanging way too much hope on Uceris, I'm sorry to say. Even if it did help I would doubt your ability to go off of it without flaring again. It's a bandaid for a gunshot wound, at this point, sorry to say.