New and So Many Questions! Help!

I would insist on a maintenance medication. I hope you get approved for the Uceris. I took it and it's great.

What type of enemas are you using? How often are you using them?

I was officially denied on Friday by my insurance for the Uceris - they sent a list of other meds and I would need to have tried 6 of them before they would approve. Ridiculous!

I'm taking the mesalamine enemas at night - normal dosage I think (one bottle) Is it out of the ordinary on the enemas to improve right away and then experience some bleeding again?

Thanks everyone!

since the inflammation is extending into the sigmoid colon, some benefit from an oral pill is expected.

You might take 1200 or 2400 mg of mesalamine oral, and possibly taper the enemas to 1-2 weekly after your bleeding stops. later you might taper off if the oral pill is working. the closer to the rectum, the less benefit form oral, so maybe occasional enema as part of maintenance. the oral should help prevent spreading upwards.

if the Uceris does not get approved, you could ask about short term use of some steroid enemas, alternating with the mesalamine enemas.

some up and down in symptoms, including bleeding, is normal. I would not worry too much about some bleeding a couple weeks after starting enemas. If the bleeding persists, or increases, you might have to consider some things. One possibility with generic mesalimine enemas is that the Sulfate in the suspension is beginning to irritate you colon. You can get a sulfate-free mesalamine, but it is name brand and costs more.

good luck

I don't think it's normal to not take anything for maintenance, but rectal meds can be a maintenance plan, if you're continuing them long-term. Since your inflammation goes into the sigmoid, you might benefit from an oral pill, like DB said, probably wouldn't need a high dose... perhaps he is trying to keep you maintaining with rectals unless oral meds prove to be needed. It sounds like you trust your GI and he specializes in UC, so I hope he is giving you the best possible advice. Uceris is great, but it may not be necessary at this point. it's possible you could get through this with an increase in rectals or the addition of steroid rectals, or worst case, an oral mesalamine. I got out of a severe pancolitis flare up when I was first diagnosed with 3600mg Asacol daily + rectals. Good luck!

Hi and welcome to the forum.

AmyAzz said...
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.

AmyAzz said...
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.

AmyAzz said...
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 prescriptions 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.

Sulfide and Sulfites are different, and the wine was most likely not taken rectally. But if the bleeding is not getting worse with continued enema use, then it may be less likely a reaction is involved.

It can take weeks to get full effect from enemas, so you may turn a corner.

good luck