Flare Plateau - Where to go from here?

Hey everyone,

Diagnosed in April 2007 and have been in a flare ever since. I have been visiting these boards regularly and have really appreciated all the info. I felt the need to post because my progress has stagnating and I am looking for suggestions.

I have gone from 15 BMs a day with severe cramping to around 6 a day with no cramping. Fiber supplements along with colazal and cortisone enemas got me to this point.

The problem is I have hit a wall. My life is at least manageable now, but the blood is still there with every BM, and I still have urgency and unpredictability with the BMs. My condition has not changed in a few months now and I am beginning to worry that remission is simply not in my future.

Does anyone have any suggestions for medication/treatment to discuss with my Doctor in order to break through this wall I have hit and get me in remission?

I have UC throughout the whole colon.

I started on the Asacol and switched to Colazal.

The only enemas I have tried so far are the corisone, they are called Colacort.

I am currently using the Reuteri probiotics.

My last scope was about a month ago, it was just a Sigmoid though. My last Colonoscopy was in May.

And yeah I had a stool sample taken.

I can totally sympathize. I also thought I'd never see remission. I went through Asacol, Colazal, Pentasa and back to Colazal because it seemed to help the most. I was on steroids for a long time. I did Mesalamine and steroid enemas, which either didn't help or made me worse. I started on Imuran, which also helped a little. Probiotics had no effect, nor did other natural remedies. I was at my wit's end when I finally started getting better.

This is a very frustrating disease, and it can take a while to find the right combination for you. I'm so glad you found this forum because it can offer a lot of support, a wide variety of treatment options that have worked for us, and a place where you can discuss this DD and be completely understood.

quincy said...
How many Asacol were you on initially? Were you also on the steroid enemas at that time?

How long have you been on the Colazal with the enemas? are you doing the enemas nightly?

I suggest you maybe try Pentasa and switch or add the 5aSA retention enemas nightly and use a steroid foam enema during the day.

The Reuteri probiotics are excellent...I do use them sometimes in conjunction with mine.

What fibre supplement are you using (exactly)..and how often?

Do you consume any artificial sweeteners?

quincy

I was on Asacol along with Prednisone and I was taking quite a few a day, I can't remember the exact number. I switched because I wasn't seeing much of a change and my dad and another person I know with Colitis both recommended Colazal.

I have been taking the Colazal with the enemas for a couple months now, it used to be nightly but now I am doing them on MWF.

I am taking a generic version of Metamucil fiber supplement. I am adding two tablespoons to a glass of water a day along with having a bowl of high fiber cereal or oatmeal in the morning and a banana.

I don't consume any artificial sweeteners.

I am assuming Pentasa is a pill that replaces Colazal, but the 5-ASA I am not familiar with, what name does it usually go by? Is that the Rowena enema?

Thanks to everyone for all the suggestions!

Hi..I think you should consider to change the fibre intake in cereal form and have maybe more protein in the morning such as an egg and add the fibre by having a whole grain toast.

If you mix the Metamucil with just water....I'll guarantee you there's artificial sweetener in there somewhere. That could be a culprit.

Are you bleeding at all?

I wouldn't abandon the 5ASA meds yet...5ASA meds are what you're taking in pill form and in rectal form.

Start by changing your diet...I think you're actually getting too much fibre.

quincy

I think you should still look into the food change regarding the cereal....I think you're getting too much fibre and not enough solid foods.

What do you eat during the day normally?

One thing you might want to try is while you're doing the enema....insert it and then withdraw just to the edge of the anus (but still inside)...start squeezing the med from there while you're pushing it in for full insertion.
This will help with the urgency as well.

The capsules won't have any sweeteners in them....maybe a good option.

How many Reuteri probiotics are you taking daily? You can take up to 3.

With pancolitis...do expect healing to take a long while.

You have a lot of options...try not to be too frustrated. Regarding artificial sweeteners...all gum has it now (if you're a chewer)...and most of them can give gut symptoms.

You have improved a lot...it took me about 2 years to finally get it all worked out with the meds and to have a more consistent lack of symptoms.

quincy