Just a question...

So I have a question. I have been doing pretty well lately. In July I was doing terrible, diarrhea with blood 3+ times a day, urgency, abdominal pain, etc. I was put on remicade, and it has been, for the most part, really good for me. Now, I am going only once a day, formed, no urgency, no abdominal pain, but sometimes I do see blood mixed in with the stool. There’s not really a lot, you really have to look for it. And it’s not all the time, it’s more on and off. So my question is, is this normal? Does it take a while to be in a complete remission? Am I making progress? I had my 5th infusion a week ago, and obviously I don’t want to be going backwards. I am on 10mg of remicade at 4 week intervals. Thanks for any help you guys can provide me with.

P.S. I had a bout of c diff in the middle of september but after the vancomycin it went away.

It’s more bright I think in color. If it is indeed blood, is it normal to go back and forth with seeing it? Also, if I had a hemorrhoid, wouldn’t I be in pain? I am not in any pain at all.

Sometimes it might be darker in color like you said, but others I think it is leaning towards the bright red color. Do you think I am making progress though despite the occasional blood I see?

is remicade the only med are you using ?

seems like with remi users occasional blood seems somewhat common - with you just getting going with it, i'd give it more time before being overly concerned - good luck -

Hemi's don't necessarily cause pain, at least initially. The pain associated with a hemi is due to a blood clot that forms inside it, clots cause pain. When it has yet to clot, it doesn't hurt and you can have an internal hemi for months without any pain.

A couple months back, I saw interment blood like you describe: all bright red, appeared some days and not others. I started freaking and thinking flare (as we all tend to do with UC). Temporary upped my rowasa but still intermittent blood. Then a internal hemi poked outside my sphincter and it hurt like all ungodly hell. That hemi fell off on its own and the blood stopped; none since. So certainly possible. More likely if you sit on the toilet for long periods of time and/or strain a lot to poop (both things I was very guilty of and have vowed to stop to avoid a repeat).

Give it more time, but keep a watchful eye for any signs of regression.

Yes, the path from flare to remission is not a linear line, with steady day-to-day improvements. Rather it is much like a rollercoaster ride full of surprise ups and downs. Perfectly normal to have good days followed by bad days despite it being completely infuriating. Internal-healing is a very slow process and until the "fat lady sings," you're going to have some wild variations bm-to-bm or day-to-day. That could mean blood randomly appearing, it could mean less solid bms, or days with more bms than your normal, occasional discomfort or urgency, etc.

Not sure how long you've been pred-free, but we can occasionally relapse within a couple months after ceasing pred.

You're only at infusion 5, and only a small subset of patients are at a full remission and symptom-free at that point. I'd expect 8 or more infusions before you cross that threshold.

I'd say remain cautiously-optimistic, yet vigilant if the random bad days stick and become an everyday occurrence ( a sign of regression).

It is concerning that you see the blood after the pred taper. Your flare may not have e4nded but it last vestige was artificially suppressed by pred. Hopefully with a bit more time Remicade will handle the last of the flare.

Are you taking anything to prevent forming Remicade antibodies?

DBwithUC said...
It is concerning that you see the blood after the pred taper. Your flare may not have e4nded but it last vestige was artificially suppressed by pred. Hopefully with a bit more time Remicade will handle the last of the flare.

Are you taking anything to prevent forming Remicade antibodies?

I’m not taking anything to prevent antibodies. Just the remicade itself.

If the flare didn’t totally end and the pred was just masking the blood, do you think the remicade will still be able to knock out the last bit of inflammation?

Then again, I don’t have blood all the time and I have all formed stools. So it’s either the end of a flare and the healing process, or a hemi like iPoop said.