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Calling GI tomorrow; ideas please!

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Posted 3/10/2014 6:08 AM (GMT 0)
Hey guys!

I know a few of you know my story and whats going on lately.
My GI is back in office tomorrow and I want to have a list for when I call her.

So far I believe I want to ask for a quick taper of the prednisone and switch to Uceris. Might as well try it.
I also need more Vancomycin as my c.diff is not gone.

I would like to start on some UC meds... but with the c.diff, we don't really know how my UC is anyways. So I am unsure about that. Though 6mp/Imuran take a while to work, so I would rather start now instead of wasting time.

I also am seeing another GI on Wednesday the 19th. That was my originally scheduled appointment. So I will be able to get a Second Opinion after talking to GI tomorrow.

I know I need a dexa scan soon too. What do you guys think?? I would love your opinions on what to talk to her about. And though she has said no before, I know, I know... I'll bring up rectals again. Though, honestly, I don't think I will be able to retain them at all. For over two hours today I was having liquid D every 20 minutes. That SUCKED. I'm still going around 15 times a day... so I am not sure how long I could retain anything.


Thanks for all your help as always!!
Posted 3/10/2014 7:16 AM (GMT 0)
Katie,

I would definitely ask for some rectal meds. Even though you have pancolitis, it will help your rectum and sigmoid to recover faster and it might even help with urgency.

I think starting Imuran is a good idea. The sooner the better.

Not sure for how long you've been on pred so I don't know how much sense a dexa scan would make at this point. I've been on pred off an on for 11 years before I got my first. But bring it up anyways.

I hope and pray that you get better soon!
Posted 3/10/2014 7:29 AM (GMT 0)
I was told that damage from pred to bones starts after 4 months... by a few people.
I have been on it for over 6 months. So.. probably a good idea :/
Posted 3/10/2014 9:21 AM (GMT 0)
I didn't know that. I hope everything goes well for you today.
Posted 3/10/2014 2:24 PM (GMT 0)
I think you need to get your c diff under control before starting any new oral meds that you will just crap out. I'd ask for other c diff treatment options.

You are taking saccromyces b. and bacillus coagulans, right? Please tell me drs tell their c.diff patients to take probiotics.
Posted 3/10/2014 2:51 PM (GMT 0)
I had two GI's tell me in order to help beat the c-diff, you must treat the disease so I was put back on Cimzia, although I don't think it is helping much because I probably have antibodies to it from past use. I suggest asking for a biologic, if your GI doesn't suggest it. This c-diff is no joke and is hard to eradicate. I am waiting for the date of my FMT. If you are vancomycin resistant, I highly recommend finding a GI willing to help you.
Posted 3/10/2014 4:09 PM (GMT 0)
I sure hope you can get something to help, up to 15 BM a day is a heck of a lot.
Posted 3/10/2014 4:20 PM (GMT 0)
Ive been at more Poppie... :/

No, GI didnt tell me about probiotics. I was drinking Good Belly and Kefir but a friend told me more specifically s. Boulardi so I have that coming in the mail.

I had asked on here what probitics to take with Vanco for c.diff but no responses :/

Now that I have probiotics coming (culturelle seems to already be helping a little) I am going to ask for more vanco and stick to my plan of rest and relaxation. Besides work, I have bedroom set up as command post :D

Adjustable beds are HEAVEN with IBD.
Posted 3/10/2014 6:58 PM (GMT 0)
Would something like Asacol help if Lialda didn't? I know that Balsalazide made me SUPER sick even though Asacol had put me in remission twice.

I'd definitely ask about 6MP or Imuran, and rectal meds. Even hydrocortisone enemas would be good. You eventually have to taper them, but they don't come with nearly as many systemic side effects.

Good luck! Sounds like you are ridiculously and miserably sick :(
Posted 3/10/2014 9:36 PM (GMT 0)
IF you have insurance and they will cover your DXA (which prednisone use as a dx works) then DEFINITELY get it! I read that for women, by age 30 you should start thinking about calcium supplementation. If you are in high risk category for osteoporosis (thin, tall, Caucasian) even more of a reason to get it. It also will serve as a baseline for you in the future....though hopefully prednisone wont be a way of life for you!
Posted 3/10/2014 10:24 PM (GMT 0)
It wont be. The prednisone doesn't do squat for me so im tired of being on it...

I think lialda and Asacol are too similar for there to be a difference?

I am waiting on a call back. She might wait till im done with work at 7.
I need to figure out why after two weeks of vanco my insurance charged more for it, as well. Blehhh.
Posted 3/10/2014 11:52 PM (GMT 0)
That has happened too me before. It's as if they decided to increase the price on the drug because you need it.
Posted 3/11/2014 12:08 AM (GMT 0)
Many people have a good response to some 5ASAs but not others, even though they're technically 'the same'. Unless you think the Lialda had a negative effect on you, it's definitely worth trying more of them.
Posted 3/11/2014 12:37 AM (GMT 0)
Even after two decades of using prednisone for flares, my bone density tests fine, good. I walk, strength train, golf, and swim for fitness.
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