Hello Everybody,
I just joined the forum and am pleased to be a part of this.
Today I am battling frustration playing the waiting game again.
Two weeks ago, I rejected Remicade, with seizures of my neck and back every time I sat down for 2 days, followed by massive diarrhea, where everything that what went in came out the same on exit.
The last time I had it like this was when I first got hemorrhoids and decided to take fiber pills and eat a lot of solids, BIG MISTAKE. When I first went into the hospital ER, it was because I was bleeding so I bad. I had not idea what I was doing to myself with the fiber pills. They felt my hardened stomach and gave me a CAT scan and diagnosed the Crohn's right away. They wanted to admit me, but they were over booked do to a large bus accident and lots of critical patients. Two days later I went to my new GI doc and was sent back to get admitted. The ER doc told me my intestines had completely shut down and I was four days away from complete organ failure and never going home again. I did not process what this meant for a few months and then it really shook the monkeys out fo my tree, knowing I was so close to death.
So freaked out again, I called my GI office and spoke to nurse, she called back after consulting with the doc and told me to get back on Prednisone after I they had me go to the lab for more blood work. I already had a follow-up in two weeks, so they didn't schedule a closer appointment.
The Prednisone worked and kept me out of the hospital. I waited for the appointment with my Physician's Assistant who had been great so far.
She went over my my results and my C-Reacitve Protein which indicates massive swelling is supposed to be 8 and is 186.9. She was upset I waited two weeks to see her, but there were not other appointments available. When I told I was very worried, she said she was worried too and wants me to see one of the Doctors. She wanted to put me on a new drug, which my insurance does not cover and cost thousands of dollars, so she put me on Imuran. Now I'm waiting for another two weeks to see how the new drug works and then see the Doctor.
4 weeks on Prednisone that drives me insane sometimes. My dose is not very high, but I am very sensitive to it. If was not for this and the anti-diarrhea medicine, I would be back in the hospital. The Imurin does not seem to do much but upsets my fragile digestion. My research on the drug said it could take weeks or months to really work.
I know, I'm not as bad as many others and better than many others, so I should not despair. Having no energy and playing the Prednisone waiting game, it could be worse. Even though I take iron, my hemoglobin is still low and that kills my energy.
I see a nutritionist who has me on a lot of Probiotics and vitamins, the D2 is a prescription.
Regardless,
Blessings to everyone and me best wishes for everyone to be as healthy as possible.
Michael
I take 16 medicines right now, that includes supplements.
Predisone 60 mg a day
Imuran 5 mg daily
Metformin 2000 mg daily because Prednisone shoots my blood sugar too high
Linsopril- HCTZ 10/12 mg, Blood pressure every other day, which I used to control with exercise.
Ambien 10 mg to sleep a few hours at night
Florastor Probiotic 4 times a day
Renew Ultimate Flora 50 Billion 2 times a day
Vitamin D2 50,000 iu once a week
Vitamin D3 2500 iu daily
Vitamin B12 5000 mcg daily under my tongue
Vitamin Iron 65 mg daily
Vitamin Potassium Gluconate 550 mg daily
Lopermide to nearly keep me solid
One A Day, Men over 50 daily
Cortisone Foam up my back door for internal hemorrhoids
Nitroglycerin, hydra-cortisone, lanacane for y external hemorrhiods