Hi and welcome to the forum.
today I started bleeding again - not nearly as bad as before but still bleeding. Now I'm really worried things are backsliding.
I wouldn't worry about
seeing blood just today. Do worry if your consistently worse for a series of consecutive days.
I asked if I would be prescribed a maintenance drug after the steroid and he told me no, not if I was doing well. Which seems strange to me because most people on this forum advocate for maintenance medications to keep flares at bay.
A maintenance medication is the best recommendation to have the longest periods of remission (that is timeperiods with zero symptoms) and shortest and least frequent flares. As you have proctosigmoiditis (Ulcerative colitis within both your rectum and sigmoid colon) then it'd be best practice to take both an oral anti-inflammatory mesalamine (like asascol, lialda, apriso, pentasa, or delzicol) and an anti-inflammatory meslalamine enema, which you are already taking. Technically speaking, the enema goes as far as the splenic flexure (on your left side, where your large intestine turns and goes across your abdomen) and would therefore cover both the rectum and sigmoid colon. However, it's good to take an oral mesalamine to reduce the odds of your ulcerative colitis spreading higher, and the oral mesalamine does provide additional anti-inflammatory dosage to the sigmoid colon and rectum, as well. Treat from both ends for the quickest and best results with UC, and gives the longest remissions.
Now I'm really worried things are backsliding. I saw my GI doc last week and he also wanted to prescribe Uceris which my insurance didn't want to cover so we were waiting on an appeal. They officially denied me
You may not need steroids, but they are a good tool to have in you ulcerative colitis medication toolbox for severe inflammation and really, really bad uc symptoms. And generally that's the recommendation, if you have mild and even moderate inflammation then you can often try to avoid steroids. Sometimes we don't need them, and a simple increase in dosage of our other medications can conquer a flare alone. Sometimes we're not lucky, and steroids become necessary. You can try, and if it becomes necessary then get the steroids. You can avoid many of the pred symptoms by taking oral Uceris (which has a delayed-release coating and is applied topically to the large intestine), or you get the same exact limited side effects by using rectal-route steroid enemas, foams, or suppositories (which is something you can ask for prescript
ions for as Uceris was denied).
I'm currently on prednisone, it's not horrible, I'm grateful as my flare is well managed and I stopped this flare early before it turned into a nightmare. However many do encounter nuisance side effects and I am no exception (I've got a bit of acne, a little bloating, a little bit of chipmunk cheeks, etc.). All steroids are wonderful emergency rescue medications that stop the worst of UC symptoms within their tracks and buy us time for other UC medications to work. So, we have a love-hate relationship with prednisone, it's wonderful and it's horrible, and it's used only when necessary.
A typical avoid pred attempt would be to go from a maintenance dose of 2,400mgs a day of asacol to 4,800 mgs a day, and increase rowasa (mesalamine) enemas from weekly to nightly. Should that not cut it, then prednisone is often needed.
Moderator Ulcerative Colitis
John, 38, in a minor flare, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; 50mgs 6MP, 4.8g Lialda, 17mgs pred (tapering)I just took a yuge Trump and clogged the toilet
Post Edited (iPoop) : 10/17/2016 2:44:15 PM (GMT-6)