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Yes, I talked with her ped about constipation, but her ped was pretty certain she's not constipated (she has large mushy stools daily and the ped thought we'd see more liquid stools less regularly if we were dealing with constipation). She'll order an x-ray if we want one. Maybe I should ask for...

Hi, all! I just wanted to say that L is going to back to see the GI at the end of Aug when I will hopefully have a productive discussion about meds, monitoring L's disease, and getting another opinion from a second doc (our ped encouraged laying it out to the current doc and then going for it)...

Thanks, Maya and CIC. I haven't seen blood since last Monday. L is mostly okay, but she has episodes where she feels nauseous or has lower abdominal pain. It's often at bedtime or early in the night or first thing in the morning. She typically seems fine during the day. She's lost a little...

Fcal was 22. Waiting to hear back about what the doc thinks and considering next steps about another opinion.

Can you guys remind me what the turn around time for a fecal cal test is? As I expected, all her blood tests are lovely and normal. Infectious causes are ruled out. The hemoccult was negative, too, which kind of surprised me. If her fcal comes back normal I'm going to be tearing my hair.

The ped did order a fecal calprotectin (after asking what it was). Also she ordered a bunch of stool tests to rule out infectious stuff (again) and gave me the name of another ped GI not associated with Children's. I haven't heard back from L's GI nurse yet, though.

Pangolin--L's been diagnosed for three years now. We never even considered EEN because L also has autoimmune hepatitis and primary sclerosing cholangitis. We went straight to prednisone to knock the AIH into remission, and that also did a great job on her IBD. At this point, we could possibly...

Also, there are a few people in the PSC/IBD community who are on Flagyl as a maintenance med, but not many. It has seemed to be fairly effective as an adjunct to the azathioprine for L, at least until recently.

The main trouble is that I will have to assert myself to both my husband (who vacillates between thinking L is in serious trouble and that she should just buck up already) and the doctor (who has been talking down to me in the kindest way since L was diagnosed). There are lots of other reasons...

Hey, all. I wanted to let you know what L's experiences have been since restarting flagyl. First, when she started the flagyl again, the abdominal pain disappeared almost immediately, like within two days. The diarrhea was gone within a week. I thought...well, this is what we're aiming for...

The doctor's reply is...restart flagyl. Call if the diarrhea doesn't go away. :( I talked to one of the other nurses this time and she seemed totally confused about the length of time L has been on flagyl. "This is usually only a 14 day course..."

I've read a couple of articles that talk about flagyl as a maintenance drug, but agree that the positive effects are modest. L had to be on the azathioprine for her autoimmune hepatitis. I thought maybe she would come off that and find another drug for the ibd, particularly with the lymphoma...

L is seen at Children's Colorado (the major regional center). I do wonder about her doc. She is a GI and sees two populations at the hospital, liver patients and GI patients. I think that's why L got assigned to her. But she's so very low-key and hands off about it all, I usually feel like I'm...

Yes, this is actually one reason I've worried about L. Doc makes decisions based on bloodwork, but L's inflammation markers have never been elevated, even when she was diagnosed and had multiple inflammatory diseases active. But I know some docs lean heavily away from invasive procedures unless...

Her last scopes were almost three years ago. Doc seems to be a proponent of fewest invasive procedures possible.

L was on flagyl as a maintenance med. She was on it about 1 1/2 years. I know there are serious adverse affects that can occur (as with most meds), but thankfully we never saw them. I was *very* excited to have her off, though.

So after all my concern that L hasn't really ever been totally well, despite clean bloodwork, things seemed to settle down and I sternly told myself that I was going to stop blowing things out of proportion. At her last appointment the doc was very pleased with her weight and growth. I was...

Primary sclerosing cholangitis is another liver disease. It is not uncommon for it to overlap with autoimmune hepatitis, and it is also strongly associated with inflammatory bowel disease. I don't know that it would account for all your symptoms/bloodwork, though.

CIC--L's GI actually sees two different populations in the hospital, both liver patients AND regular GI patients (are there such things as "regular" GI issues? Ha!). 80% of PSCers also have a form of IBD, and I think that's why we were "assigned" to her when we were referred. But I have wondered...

Hi, All! It's been a while since I've posted, but I kind of hang around reading posts. Even though I don't post often, I feel like I get a lot of good advice. :) Overall L is doing okay. Her bloods are good, though her LFTs are rising just a bit (not unexpected with PSC). She eats enough to...