Proctosigmoiditis

[crohnsinct]

My daughter has Crohns mostly located in her entire colon and rectum. She was dx'd almost 5 years ago and went straight to Remicade. She has had a few blips but no real flare.

Once last winter she had a toilet full of blood. Then nothing.

Over the past few months there has been a good deal of mucus coming and going as well as bits of blood.

Yesterday she went to the bathroom twice and had a toilet full of blood both times and the second time was finding clots on the toilet paper (sorry so graphic).

The GI says well we know she has proctosigmoiditis so lets do Proctofoam for a week.

Here is my question for you all, if she is on Remicade and Mtx, does this recent development mean that her meds aren't working as well anymore? Her last infusion was two weeks ago. I am also wondering if this might mean we could potentially see problems occur further up and how effective Proctofoam is in kicking the disease back.

Thanks

 

[ronroush7]

I am sorry for what your daughter is going through. They may want to test her to see if the Remicade is still effective.

 

[crohnsinct]

They tested her levels infusion before last. They were 5.6 which is within therapeutic range but on the lower side so there is room to adjust. Guess we will just have to wait and see.

 

[crohnsinct]

I posted this in the uc sub forum but I think more people hang out here so thought I would post here as well.

My daughter has Crohns mostly located in her entire colon and rectum. She was dx'd almost 5 years ago and went straight to Remicade. She has had a few blips but no real flare.

Once last winter she had a toilet full of blood. Then nothing.

Over the past few months there has been a good deal of mucus coming and going as well as bits of blood.

Yesterday she went to the bathroom twice and had a toilet full of blood both times and the second time was finding clots on the toilet paper (sorry so graphic).

The GI says well we know she has proctosigmoiditis so lets do Proctofoam for a week.

Here is my question for you all, if she is on Remicade and Mtx, do you think this recent development means that her meds aren't working as well anymore? Her last infusion was two weeks ago. Her remi level was 5.6 and doc considered it good but I know that is on the lower end of the therapeutic range so we could go up. I am also wondering if this might mean we could potentially see problems occur further up and how effective Proctofoam is in kicking the disease back.

Thanks

 

[Cross-stitch gal]

It's a possibility that the medication could have stopped working. But, this is a good question for your doctor's office. I know that I do pass a lot of blood and mucus in the toilet when I flare. I would probably see how the treatment that your doctor recommends first though. If it doesn't start working within 2 or 3 days I'd call and let them know. Please keep us updated.

 

[crohnsinct]

Bleeding stopped earlier this week but then she had trouble having a BM. Doc said probably just inflammation and continue the foam for another week then every other night for a couple of weeks. '

As of today she is relatively back to normal. We see GI first week in December for her regular follow up so I will pick his brains then.

Hope you are all doing well.

 

[Cross-stitch gal]

Thanks for the update!

 

[crohnsinct]

Looking for some BTDT advice or perspective.

We continued the foam with my daughter and it pretty much got rid of the bleeding. However, she was passing mucus and loose stools whenever she passed gas. Plus the gas was urgent and she wasn't always making it to the bathroom on time. Then when I went to give her the foam one night there was white pus like stuff coming from her anus. I called GI and he said all of this could be the foam and instructed us to discontinue. We did.

Now it is 3-4 weeks later and while she isn't in an all out, terrible flare she is still having urgent trips to the bathroom to pass gas which is almost always accompanied by lots of mucus, loose stool and bits of brighter red blood. Often not making it in time.

She was dx'd 5 years ago and has never had these problems. At her appointment the GI explained that the proctosigmoiditis could break through but the rest of her Crohn's be fine. O.K. but at 17 what do we do about this other problem? Is this just something that you have to learn to deal with when you have proctosigmoiditis or should I be pushing for further testing (fecal calprotectin, scope etc). He did recently do a c diff test and it was negative.

 

[crohnsinct]

GI says add a probiotic. 2 times a day for a week then once a day.