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Getting frustrated, admitted again

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Ulcerative Colitis
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Posted 3/16/2012 1:20 PM (GMT 0)
First off, sorry for any spacing or spelling errors as I'm posting this on my iPhone.


I was diagnosed with UC last April and since then have had two flares. I was hospitalized for three weeks in late December/early January and finally went into remission the start of February. I was feeling great and even took a mini vacation.

about mid February I started flaring again, this time with more blood than before. I went to my dr and she put me on 40 mg of prednisone, corti foam enemas 2x/day, and canasa. I also take 4 lialda/day.

I also have celiac disease and ibs so that makes it even more fun lol. I calledy gi yesterday and spoke with the nurse who sent me to my local Er for
Fluids, I thought I'd be seen and then released... Nope. They admitted me to the local hospital last night because the hospital I go to (Dartmouth) didn't have any beds so I'm being transferred sometime today.

I'm getting so frustrated with this disease... I feel like I've had to put my life on hold and I worry about the future. The gi is going to start me on azithriprine (sp?).

Sorry for the long vent
Posted 3/16/2012 5:18 PM (GMT 0)
twizliz77
So sorry that you are not doing well right now...hopefully they can get you up and running again soon.
Starting imuran while also on full Prednisone should hopefully help you transition off the pred during the next few months as
you give the Imuran a chance to build up in your system.
Best of luck that you get out quickly and get on to the road of recovery-
try to stay positive :)
Posted 3/17/2012 12:11 AM (GMT 0)
So sorry you are doing so badly.  Have you tried Humira?  When I was taking it I really felt like a different person.  This disease can bring you to your knees I know!  I was afraid of the Humira but gave in and it worked.  Doesn't hurt to try it.  Good luck and hope you feel better.

Stacy

Posted 3/17/2012 12:50 AM (GMT 0)
I can totally relate to how crappy it is to be in the hospital. The only good thing is at least you generally start feeling better pretty fast.
Good luck to you.

paula
Posted 3/17/2012 1:33 AM (GMT 0)
Twizliz, i'm sorry all thats going on with you.

But because you've had celiac disease now, do you make an effort to stay away from wheat and gluten? What dietary changes have you made?

It sounds like you really need to make some positive changes here because taking 4 different types of drugs just doesnt seem to be doing it. Maybe just the ones you know that have helped you in the past you should stay on. Have you visited any other doctors?
Posted 3/17/2012 2:50 AM (GMT 0)
Aza has a great success possibility. Try to think positive. Have you completely elimintated gluten?
Posted 3/17/2012 3:21 PM (GMT 0)
Sorry to hear you are having a rough time, was there last month, def sucks to be in the hospital. I totally get the frustration at having your life on hold, I have felt like that for awhile. I keep saying I want to get back to normal, but just can't get there. Just try to focus on getting better and know this won't last forever, even if it feels like that right now.

Fluids and probably more pred will help you feel better pretty soon, and then they can watch you and make sure, as you barely got a break from being sick after your last bout in the hospital. Def sounds like its time for a step up in medication, Azathioprine is the next logical step. That will help you ease off the pred when that time comes, trying to taper off pred and getting rebound IBD symptoms is so frustrating and Aza can help with that.

Just take of yourself, try to relax--movies, music, books, whatever it takes to get through right now.
Posted 3/17/2012 4:16 PM (GMT 0)
Thanks for all the responses. I have been gluten free for a while now, have to admit I haven't been perfect since I was diagnosed with celiac in 2008, but have been perfect since 2011. I am thinking about giving up dairy next, although I live milk so it will be hard.

I was transferred to the hospital my gi is at from my local hospital last night, I'm scheduled to get a picc line at some point today as I have bad veins and the Iv nurse actually remembered me from my last admission in december.
Posted 3/17/2012 4:24 PM (GMT 0)
     Terrible disease and sorry to hear you are once again in the hospital.

     I had surgery in 2010 but my last hospitalization for UP (proctitis) was in 2008 and they put a PICC line in me too.  Beats having my veins blown all to bits.  Not pleasant.  I do hope they find a medication that works for you.  Everyone is different with this disease.

Posted 3/19/2012 3:48 AM (GMT 0)
A mini update:

I had the PICC line put in yesterday, it wasn't too bad, but if I try to move my arm to much or lift something it really bothers me, so I have to be careful with it. I also go to have a colonoscopy today (oh the joys!) and I was very concerned about not be properly sedated, they tried to get an anesthesiologist but they were unable to on such short notice and the fact that it was a Sunday. The nurses and doctors were very good and made sure that I was comfortable during the procudure. There were two GI doctors there, one performing it and the other one sat at the head of the bed with me and pointed stuff out to me on the monitor. I really appreciated the special care I was given and helped me understand what was going on in my body. It started to hurt and the one performing the procedure said that he was at a point where he could stop, they had gotten the info that they needed.

They said that I was very inflamed and in the middle of a flare. They took some biopsies and said that as long as I don't have an infection they will start me on Remicade tomorrow.

Today has been a rough day, my potassium was at 2.9 (low normal is 3.5) and my bp has been high due to pain (140/110).

Thanks for all the support, makes me feel so much less alone.
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