Struggling in getting back into remission

Hi

I had a flare up of UC in early Novemeber 2017. At that time I was taking 2.4g/day mesalamine tablets and 1g mesalamine suppository for maintenance.

I immediately upped the mesalazine dose to 4.8g daily (I am taking Mezavant, Lialda in the USA) and swapped the suppositories for 4g liquid enemas nightly.
In addition, my GI prescribed a 30 day course of Budesonide MMX tablets, a topical steroid. I finished the course at the end of December, but that made little difference. It has been more than two months now and still I am not back in remission.

Since the start of this flare, my symptoms have been 1-2 BMs per day of loose stools, with often a lot of mucus mixed with it. The mucus looks sometimes yellow, but more often has a light brownish color. Every now and then I saw blood mixed with the mucus, making this dark red (generally it happened about 7-8 times). I am also wondering if the brownish mucus means necessarily that there is blood mixed with it.
Another symptom that I have intermittently is abdominal pain, it feels like a burning, rather than cramping, and sometimes is localized on the lower left abdomen, some other time on the lower right abdomen or between the sternum and the belly button.
I have also had a fecal calprotectin test, but this came back normal (21, with 50 being the threshold) and it puzzled me since I collected the sample when I had a lot of mucus and loose stool!

I have started two weeks ago a second course of Budesonide MMX. Initially there was an improvement, but then a couple of days ago it got worse, with looser stool, more mucus and pain.

My GI suggests to keep taking the current medications for longer before starting something else. I am losing confidence and getting depressed though, this is my first real flare ever (even before diagnosis symptoms were milder than now) and I hoped to resolve it quickly.

Would prednisone be the next step? I have never taken it before. I was also wondering if trying Clipper (Beclomethasone) is worth, before moving to something stronger.

Are you sure you’re in an actual flare? These symptoms kind of sound more like ibs to me. When I’m flaring I go 20+ times a day with lots of blood and mucus... I would try adjusting your diet before asking for prednisone because the prednisone will eventually stop working if you use it too much. I don’t think pred is appropriate for this flare unless they put you on a low low dose. But 1-2 times a day is normal for a lot of people. Try eating foods that could help bulk up the stool to see if that helps first.

Thanks everyone for the replies.

I was diagnosed with distal UC in April 2016, so it is almost two years. Before the diagnosis, I barely had any symptoms at all, but mainly it was the anemia and loss in weight that led the doctors to perform a colonoscopy.

Since then and until the mentioned flare, I have been mostly in remission. Several times in the past two years I had bouts of constipation and loose stools with mucus and abdominal pain. I thought these were little UC flares, but now I am wondering if I have IBS on top of UC.

Regarding diet, I have eliminated alcohol, gassy food (pulses, cabbage, prunes etc.), limited fatty food, coffee and high insoluble fiber vegetables. I did a coeliac testing that came back negative.
I am taking daily VSL#3 (1 sachet) and Saccharomyces Boulardii, but honestly it is hard to tell whether they are helping or not. Since 3 months, I have also started to take psyllium husk powder, but it is not making stools as firm as I would like; the main effect is the increase in volume.

I am worried that prednisone could be an overkill and about the side effects that I would get anyway. That is why I thought about trying first Clipper. Budesonide, even though it is a topical steroid like Clipper, did not do much, but also according to some clinical trials it seems that Budesonide, unlike Clipper, is not that much better than mesalazine in inducing remission.

Regarding the pain that I am feeling, since it is often on the right side, does it mean that UC could have spread to the whole colon? Or am I worrying too much at this stage?

Hmmm I am very interested in your last question as I have that burning sensation in my right side as well. Pretty uncomfortable. Hope someone can answer that part.

Pain can often be trapped gas and/or trapped stool when you're prone to constipation.

Pred is overkill. Full stop.

Pred is good when you're miserable in a bad flare, as then the benefit outweighs the side effects. When you have mild symptoms like you describe at most use clipper or rectal-route steroids (steroud foam, enema, or suppositories).

"In the last months I have been also taking pantoprazole for heartburn and gastritis. Could this interfere with the mesalamine release mechanism?" Unlikely.

"Again I am wondering if the right side burning feeling could be caused by this..." Unlikely.

The delayed-release coating starts disolving once it is bathed in a specific PH for a certain period of time. Often they must hit several different PHs within the digestive tract. The disolve process is slow. They steadily release medication from the start of the large intestine to the rectum.

quincy said...
Adamas....i would suggest an upper scope done with biopsies.
When was your last c-scope?

If you arent on any probiotics I would suggest them.

You're going 1 to 2 times daily...... with urgency? Can you pass gas without any mucus?

q

VSL3 once daily and Saccharomyces Boulardii twice as far as probiotics.

I can pass gas (lots of it...) will mucus or stool. The urgency has not been that bad, generally I have been able to control when to have the BMs. Typically it's one in the morning or after lunch, often triggered by the fact that I still have some liquid enema in the lower intestine, and I try to empty my bowel before taking the enema at night.