Prednisone isn't a short-acting drug. Whatever is causing the symptoms to cycle isn't likely to be the prednisone "wearing off." When you were tested for C diff were you also tested for other GI infections (e.g. shigella, salmonella, giardia, etc.)?

 Good luck!

I would be highly suspicious of C. diff, even with the negative tests (especially if they were toxin tests and not the more reliable PCR test). Cipro would be the wrong thinf for C. diff, making it worse, instead of better. There are strains out there that are moderately to fully resistant to Flagyl. The next step would be oral vancomycin. There is also a new antibiotic, fidaxomicin, that they use. Barring that, fecal transplant is an option, if available in your area.

http://patients.gi.org/topics/c-difficile-infection/

I would not expect probiotics to be of much use unless your symptoms were under control with the right antibiotic.

Jan

Thank you both for the helpful responses.  I will take your recommendations as guidance.  

Some good news is that I am feeling much better today.  My symptoms have gotten much better.  I am still weak and have a ways to go but this seems like a positive step.

Thanks again for your support.

Sounds like good news indeed. If you are going the probiotic route to stay in remission, you may want to add S. boulardii to help keep C. diff supressed. C. diff leaves dormant spores, just waiting for when your resistance is down.

Jan

Hi,

I thought I'd post a follow-up.  Unfortunately I am not doing any better, still having much the same symptoms.  I am currently on 30mg of pred per day, down from 40.  My GI put me on a custom-made 9mg Budesonide enema nightly as well, in addition to ranitidine.  I am also taking four VSL#3s per day (not DS).  

The prednisone does seem to help, but not for the entire day.  When a lot of time has passed and I am about due for my next dose, the watery diarrhea comes back for several hours.

My primary care dr got involved and reviewed my case, and said that the multiple c.diff tests performed were reliable and rule it out.  He said they tested two different ways but I am not clear on the details. Also, in the hospital, I know they did test for a number of other things in the stool as well.  My primary care Dr was disappointed that they did not do a CAT scan.

I do not have any fever or cramps.  

Anyone have any ideas?  Willing to consider anything.  I've been battling this for several weeks (with a gradual decline while on antibiotics for my tooth), and it's been pure water gushing (now partially controlled by meds) for about two weeks.

My primary care dr's theory is that I originally had some sort of infection that led to a flareup of the GI tract (general colitis) and now it's a matter of getting it back under control.  Any thoughts?

Thank you!

If PCR tests ruled out C. diff, then a primary IBD issue is possible. Maybe Crohn's? Ischemia (poor blood supply) is also possible.

Another infectious possibility is CMV (cytomegalovirus) infection. This is an opportunistic infection in those who are immune compromised. One other option is fungal, but I'd think this would be evident on scoping.

Did you read the article in the "sticky" post at the ptop of the pouchitis forum?

Jan

Thanks for the new ideas, Jan.  I appreciate your insight.

I had a full scope earlier this year and the pouch looked good, but that was before this all started.  On a (seemingly) separate issue, earlier this year I had a blood test that surprisingly showed me to be iron deficient and so I had the scope and an endoscopy which were looking for a source of bleeding.  Nothing was found, and so I went on liquid iron (Floravital) to successfully bring my numbers back into range.

I suppose another scope will be in my future.  Maybe my GI will refer me for that when I see him on Thursday.  My symptoms are definitely not getting better. 

I have never had a fever through all of this, and my wife and infant have been in perfect health (knock on wood)..

Ever consider the liquid iron as the source of your symptoms? Oral iron is pretty notorious...

Jan

Jan I definitely had issues with the oral pill-form of iron, which is why I was taking the more expensive Floravital stuff.  I actually handled that well and it helped get my blood back in order.  Either way, though, I haven't been on any form of iron for several months.  I stopped taking it well before these new issues started.

Thanks for the suggestion, though.  My symptoms are just getting worse again.  I am not sure what my GI is going to do with me if he sees me on Thursday.  Nobody has done a pouchoscopy on me since this stuff has started, so maybe that would be the next step?

I don't seem to have the usual symptoms of pouchitis as I have experienced them before, though.  No gas, no bleeding, etc.  My one issue is that liquid just keeps goes straight through me.  

Thanks

Just a thought, but does anyone think the fact that my stool sample was basically liquid would have reduced the effectiveness of any tests for an infection?  They had to write on the order to specifically explain it is not urine.

Thanks

For many (most?) stool tests a liquid sample is best for ensuring that you'll find what you're looking for. I don't know if this applies to C. diff tests, but it's true of other infectious agents ("ova and parasites"). Many years ago when I was probably first developing IBD I was sent into the city (New York) from the suburbs to get a "proper" version of such a test, then performed by the health department. The first step was to drink a strong laxative, followed by sitting around in a shabby waiting room until magic happened, a liquid sample was provided, and a nerve-wracking drive home ensued. I recall receiving my very first parking ticket that day...

Thanks for the info and the laugh, Scott.

I've started taking immodium, taken three so far today.  It might be helping a bit. 

Hi, thought I should post a follow-up

The symptoms eventually got under control with help from the steroids.  I managed to taper to 30mg/day prednisone (plus the budesonide), while also taking VSL #3, and it made the diarrhea mostly go away.  I then tapered down to 25mg pred/day and after 2 days the symptoms have unfortunately started to come back.

The symptoms also came back when I tapered from 40mg to 30mg of pred, and then things got better again.  I am hoping that I can stay at 25mg pred and have the symptoms clear up again.  I am going to give it another day or two to see how things go.  I really don't want to jump back up to 30 mg of pred.

My dr wants to do a pouchoscopy in about a month.  The theory is still that this is some sort of bowel inflammation unlike anything I have experienced before.  I really don't understand it.  Wish me luck!

Thanks