PLEASE - Everyone has a different story here, but I will share my own UC story in the hope that it will help you and your daughter.
I use Rowasa enemas virtually every night and have since I was diagnosed several years ago. Whenever I try to taper down, the rectal symptoms return. As long as I use the Rowasa (and continue to take my Asacol), I am fine. And by fine, I mean completely normal in the bowel movement arena. When I was first diagnosed with this disease, I figured I would be on medication for a little while and then get off of it until I needed it again during the next flare. That hasn't been the case for me. I need to take my medication for maintenance purposes. It took me a while to learn that. It may be that she will need to continue at least one form of her rectal medication for quite some time.
As for oral Prednisone, I have used it three times - one taper during each of my three flares. I tolerate it quite well and do not experience many side effects at all. Compared to many others on this board, Prednisone doesn't bother me a bit (aside from a little insomnia). I was scared to death to try Prednisone. The bottom line is, though, that I needed it to get back into remission. It has launched me into remission each time within days. Then, I just continue on my maintenance meds and keep my stress levels down. If I hadn't tried the Prednisone, I doubt I would have ever gotten out of my first flare. Saying a blanket "no" to the drug may not be the best treatment for your daughter.
Have you ever asked your Dr. about
Entocort? That is also a steroid but is not systemic like Prednisone. Your daughter may be a candidate to try that.
I am hoping to give you some positivity with my post. I know you are anxious about
your daughter's disease, and I don't blame you, but, this isn't a life-long sentence of pain and misery. There are many of us on this board who are living fulfilling lives with UC. I am a successful lawyer at a large law firm, have a wonderful marriage and am pregnant with our first child. I have traveled all over the world with this disease. I have never missed an important event or not done something that I wanted to just because I have this disease. I do not allow the disease to slow me down. In short, I am truly blessed. It just took me a minute to figure out how to manage things. Once I wrapped my arms around the fact that I had a chronic disease and I need to take regular medication for it, it all became much easier to manage. Your daughter will figure all of this out and will go on to lead a productive and successful life. Honestly, she will.
I look at this disease like this... some people have diabetes, some people have asthma, some people have cancer... I have UC. It is a chronic disease that I needed to learn to manage and live with. Once I did, I have never looked back.
Hang in there! I can tell that you are a wonderful mother, and your daughter is lucky to have you.
- Asacol (4 pills, 3x per day)
- Rowasa (1 enema daily, as needed)
- Folic Acid (1 mg, 1x per day)
- Calcium (600 mg, 2x per day)
- Prenatal Vitamin (1x per day)
- Iron (2x per day)