Posted 12/24/2015 9:23 PM (GMT 0)
So in March 2015 I was flaring, I had a colonoscopy and it showed my chron's was active in the ascending, transverse and descending. The worse spots were transcending and descending. My doctor tried Uceris and after a month or , it did nothing.
So June I started Prednisone 40 mg. I was out of state caring for my dying father. It took a few months to get a normal stool and 100% remission.
In September I started tapering but flared badly (worse than the original flare) when I got down to 5 MG, so my doctor put me back on 30 MG. The pain and mucus lessened, but the frequency was still 4-5 and they were soft.
November I have this weird condition that I didn't think was possible, constipated diarrhea. I was having 4-5 liquid bowel movements but my intestines were completely full of constipated stool. My BMs were little in volume and I was in pain. Within hours of felling miserable, I have a hypertensive crisis and go to the ER. The ER docs ignore my chron's symptoms and are dismayed at why they can't get my BP to go down and stay down. Despite my complaints, they ignored me... Chron's is treated by your GI doc, we are worried about your heart and BP. I get admitted. They do a CT of my heart/chest, but refuse to look lower, grrrr! They run out of ideas give me dilaudid thinking if they ease my pain, my BP will go down. Sure enough, it went down. They chaulk it up to prednisone causing my BP to rise.
I get out to the hospital and my doctor xrays my institines and sure enough, I am full. Several days of taking miralax a couple of times a day does nothing. I finally take milk of magnesia (to the horror of my GI doc). Things finally move along. At the same time, I get pneumonia from the hospital and the 1st med z-pack did nothing, so I had to take something stronger. It has taken over 1.5 months to get over the pneumonia and it wore me out! Having pneumonia and a flare is a nightmare and extremely exhausting.
My primary put me on an ACE inhibitor to keep my BP in check and he is worried that the prednisone might have caused me to have high blood pressure for life!
My GI doc is trying to get me off prednisone with a quick taper while taking Uceris. I'm down to 5 MG and the pain and mucus are back and frequency is about 5-6 a day, sigh.
I have gained 75 pounds from the prednisone and can't wait to get off of it! I was even gaining weight during the weeks when I was only eating soup!
I can't wait to get off the prednisone. I have a f/u with my GI doc in a few weeks and I guess we will discuss other options. Any thoughts on my next medicine? My insurance doesn't cover Remicade.
I'm sick and tired of being sick and tired... it has been a rough year and I'm tired of using my vacation days as sick days.... I need real vacation!