About 6 months ago, when I first posted on this site, I was diagnosed with UC during an awful flareup. I had a scope and boy did my entire colon seem ulcerated. The MD put me on Lialda 1x a day and told me to come back in 6 months.
After a few weeks I started to feel slightly normal again. I wasn’t running to the bathroom every 15 minutes and no more blood.
Despite the fact that my MD didn’t go into too much detail about the disease, I was happy that I was finally feeling healthy again. I had also started the SCD diet (which Dr did not approve of), but was adding some starches like potatoes back in. My family and I still refuse to believe that diet does not play some sort of role in aggravating my UC.
Around my 6 mo point I made an appointment to have a check up. Much to my surprise about 3 weeks ago I entered into my 2nd flare. Not as bad as the first, but while my bathroom trips were less frequent, there was more blood, fluid loss, and a new friend, muscle spasms. I tried to hold out until my next gastro appointment, which was a mere two weeks away. I had already dealt with it for 3 weeks and successfully hid my pain from coworkers and family, why not another 2?
Wrong.. my worried boyfriend brought me to the ER yesterday for dehydration. I had spent much of the morning in the bathroom crying because of the muscle pain.
They put me on an IV of fluids, pushed some steroids through the IV, took a lot of blood and gave me bentyl to calm the spasms. They also called my gastro and told him I needed an appointment sooner than 2 weeks. When I left the ER I was put on a tapered dose of the dreaded Prednisone 60mg tapering after 10 days, Bentyl for the spasms, and still continuing to take my 1x a day Lialda.
On my own account I have decided to go back on the SCD with no cheating this time.
This morning is the best one I’ve had in 3 weeks, besides the Prednisone making me a zombie walking my apartment all hours of the night. The Bentyl has also seemed to help with the spasms. The only thing I dread is having the Gastro tell me he wants me on Prednisone continuously. I am worried about the weight gain, insomnia, and mood swings. However, I guess that may outweigh getting up for work an hour earlier so I have time to sit in the bathroom.
I’m also fortunate enough to live within driving distance of Johns Hopkins Hopsital, where I will be seeing the head of their IBD program in January. Hopkins is rated 3rd in the country for gastroenterology and is up to date on all of the newer treatments for UC.
I am wondering if anyone has only had Prednisone on a tapering dose and not for longer than a period of 2 weeks? I read the side effects on the label, but also wondering what other side effects you’ve maybe experienced being on it for short term.
Good luck to everyone out there. I know there are those who have it far worse than I do and not sure you handle it, but all these stories help me to believe that one day I will feel better!