Hi all. I'm feeling super discouraged. I have been in remission for so many years but after the birth of my daughter last fall I have been flaring nonstop. Sigmoidoscopy shows inflammation in some of the sigmiod and all of the rectum. I'm having bleeding and mucus with about 3 bms a day. Which I know, doesn't sound absolutely terrible. But the bleeding won't go away even after my doctor added the hydrocortisone enemas to the apriso pills. I'm feeling at a loss. I think the doctor will want to add a serious medication in about a week.

I am finding it very frustrating that my doctor keeps telling me that diet has nothing to do with this. I find that my symptoms get so much worse if I eat the 'wrong' thing. I'm not really sure exactly what bothers me other than milk and greasy foods.

Any advice about what to do? How long do you all take the enemas for before trying something new?

I understand the discouragement. Know you aren't alone. I was doing well for a while and my flare is back again. Blood and mucous. This disease is no fun. The important thing (which is extremely hard for me) is to be patient because stressing ourselves while in a flare can make it worse and harder to get out of. We have to take small steps at a time sadly. I would say (if it doesn't terribly affect you) that prednisone is a good start, then start tapering off that and get on some maintenance drug. I used the enemas while on prednisone and that sped up the remission.

If you're taking 1.5 grams (4 apriso pills) per day, taking a nightly rowasa enema and still experiencing symptoms then you need stronger medications. You didn't mention rowasa enemas, ask for those. The next medication would be immunomodulators (Imuran, 6mp, or aza).

Thanks everyone for the replies. Did any of you have side effects to prednisone? If so, what were they? And what were your doses?

When Apriso failed me, I decided to move to remicade. Prednisone will stop inflammation but won't heal the colon. I'm taking it right now to get to my next remicade infusion and side effects are different person to person. But for me big ones are increased appetite, weight gain, mood swings, weakness and night sweats.

my typical flares are pretty bad 15+ bloody bm a day. I couldn't take it anymore and moved up the med list. I don't regret it a single day. While I'm still not in remission, i have my life back. Healing has been slow but my last scope definitely showed improvement.

You need to try the mesalamine enemas nightly for at least a month or more. Adding suppositories of either mesalamine or steroid could give an extra boost of treatment.

Are you having bms that are only blood or just with stool? What is the consistency of your stool?

q

I'll bring up all these suggestions on Friday to my new doc. To answer your question my BMs are normal in the morning in terms of consistency but there is always blood coming out afterward. Then towards the evening I have a bit of diarrhea and blood and gas. Seems to only have gas when I've had dairy of any kind so I've been going dairy free for a few days to see if it makes a difference.
I suggested to my doc that I should do the melamine suppositories and he refused and said they won't work from what he saw on my sigmoidoscopy. But i have a feeling it might help? They've always got me through flares in the past. I'm discouraged by his refusal but I'm trying out a new doc on Friday. Just felt like I couldn't really talk to my current doctor without feeling anxiety about asking more questions.
Not a good feeling.

In regards to your question about side effects of prednisone...

I was hospitalized for 8 days back in January and was on 80mg of IV steroids for the first half, and then tapered to 50 mg IV, then finally, 40mg oral. I was on a 5 mg taper (go down by 5 mg every week) but after being on such a high dose for so long, the side effects became unbearable. No one had warned me about any of them so I was unaware what was happening until I started doing some research.

The physical symptoms came first' EXTREME sweating (waking up 2 times per night to change clothes because I was soaked), excessive shakiness, rapid heartbeat, insomnia, etc. And then the psychological stuff set in...

At first, I just felt kind of "down in the dumps", but I chalked it up to malnutrition and the craziness that had been my last month or so. It kept getting worse to the point where I felt hopeless (I'm going to be like this forever, I'll never get better, I'll never get back to my old life, etc..) and absolutely nothing could change my mind. I was having suicidal thoughts, unable to get out of bed, and literally did not care one iota what happened to me. I immediately stopped taking it the next morning (which is most definitely frowned upon) and that same day I spoke to my PCP who said to lower the dose to 30mg (I was still on 40 at that point) and she would call my GI doc to follow up. The GI called me back later and lowered the dose even more to 25mg with a 5mg every 5 day taper. It was instantly better.

The tricky part is when I went below 20mg, some symptoms returned. I absolutely HATE being on it so I continued my taper (knowing I had a Remicade infusion coming up and hoping that would help on it's own). 4 days post Remicade and I'm still not seeing a significant improvement of symptoms but I'm refusing to go back on prednisone (long term side effects are just as bad as the short term) so I'm at a loss.

Sounds like I'm kind of in your position and not quite sure what to do -- all I know is that I'm NOT going back on prednisone. Just my 2 cents