How normal should I expect bowel movements to be?

[GirlwiththeCurl]

So L is still having diarrhea. She has been on prednisone since July, now down to 5 mg, and also azathioprine, omeprazole, and Ursodiol (that's a PSC med). When i last mentioned to the docs she was still having diarrhea, they tested her FC and did a test for C Diff (which was neg) and then prescribed Flagyl for two weeks. That made no noticeable difference. She has been off the Flagyl for four weeks now, and is still having diarrhea, usually just once a day but about three days out of ten she will feel sick and have several episodes per day. I talked again to the nurse and the doc has represcribed Flagyl.

I don't have an issue with this, but I feel like I have no idea what the doc is hoping to do. I am starting to wonder if this is just her new normal. I mean, I don't want to ignore it if it is important but I also don't want to treat something that just is what it is... And how do we even know?!

 

[Nym]

From my own personal experience, all that flagyl will only create more imbalance in the bowel. I still have boxes of the stuff but will not use it.

I also don't want to treat something that just is what it is... And how do we even know?! Diarrhea isn't normal. The body is dumping what isn't working for it. Some medicines really do wreck havoc with sensitive, compromised systems. Build up with bone broths and stews, fermented drinks, freshly made smoothies high in vitamin C, and a good probiotoc ( I was taking 3 a day at first) to help rebalance the system. The bowel has the ability to change its cell health every 24hrs - a difference a day makes.

 

[my little penguin]

Have you asked to speak to the Doc?
If you have concerns or questions or don't understand the reasoning behind a treatment it is ok to ask.
If you don't have phone access - do you portal access where you can email the Gi your specific questions and then read the doctors response ?

Diarrhea is not normal on any level .
Did they tell you what the FC levels were last time ?
When was here last scope ?
Bloodwotk ?

DS was prescribed flagyl twice this year
Flagyl is commonly used in IBd since it reduces infection and has some anti inflammatory properties as well per DS Gi .
Both times DS improved slightly but the Gi was treating abdominal pain /rectal prolapse / frequent bm etc...
After the second dosing of flagyl the Gi brought DS in for an early appt and came up with another plan .

Your Gi would be the best one to help you understand what their plan is for your kiddo based on their medical history

 

[Lisa]

I would ask why the Flagyl and not another medication.....it's the doctor suspecting an infection? Personally I do not tolerate Flagyl well myself, it makes me feel sicker.

I would reach out to the doctors office and talk to them, don't let yourself be fobbed off.....

Sometimes the doctors don't always let the patient or family know exactly what is going on, or indirectly assume they infected what is going on.

It sounds like another/different medication may be the next step to try to get symptoms under control......

 

[GirlwiththeCurl]

The FC last time was seventy eight. The doc called this "slightly elevated".

Her scopes were in June, and showed a clean esophagus and stomach (biopsies also OK) and first part of the small intestine. The lower scope was only a sigmoidoscopy, but showed visible ulceration in the colon. The biopsies were inconclusive, but given that eighty percent of PSCers also have UC, the doc felt confident that she was in the early stages of developing some sort of IBD (CD is also sometimes associated with PSC).

Her latest bloods were normal except for very slightly low ferritin.

Her bloods were normal before any meds for anything were started (except for her liver enzymes, which were elevated), so I am not sure there is a good indicator for whatever is going on her colon. Her liver enzymes are now smack dab in the middle of the normal range, though, so that is good.

I wish we had gotten an fc before L had started meds, just to have an idea of what that was when we knew there was ulceration present... But I didn't know enough then to even ask about it.

 

[my little penguin]

Sigmoidoscopy covers very little of the lower bowel
The only way to know if it's UC like would be a a full scope
That said 78 isn't elevated given her age ( she is under 9 correct)
Upper limit is 150 for 9 and under
Drops to 50 for most labs after age 9.

Does your Gi specialize in IBD ??

Our Gi doesn't but my kiddo doesn't fit well into the normal IBd box so it worked out well
I think your best bet at this point would be to try to have a talk with your Gi regardless
On what is going on and what the plan a is for how long and then plan b as well.

Never easy
The beginning is the hardest
You learn the disease and how to communicate with your Gi
It a give and take trust that needs your be built

 

[CarolinAlaska]

So L is still having diarrhea. She has been on prednisone since July, now down to 5 mg, and also azathioprine, omeprazole, and Ursodiol (that's a PSC med). When i last mentioned to the docs she was still having diarrhea, they tested her FC and did a test for C Diff (which was neg) and then prescribed Flagyl for two weeks. That made no noticeable difference. She has been off the Flagyl for four weeks now, and is still having diarrhea, usually just once a day but about three days out of ten she will feel sick and have several episodes per day. I talked again to the nurse and the doc has represcribed Flagyl.

I don't have an issue with this, but I feel like I have no idea what the doc is hoping to do. I am starting to wonder if this is just her new normal. I mean, I don't want to ignore it if it is important but I also don't want to treat something that just is what it is... And how do we even know?!

My daughter gets diarrhea from omeprazole, and it is a listed side effect. You may consider that as a source of it.