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Hello everyone, I am new but my wife has been a long-time lurker/supporter here for me.


I could really use some advice on how to recover from my current situation.  I was diagnosed with UC in 1999, am 36 yrs old now, and have had a functioning j-pouch since 2009.  I have generally been very happy with it, living a normal(ish) life using only very small amounts of Imodium for maintenance.  Twice I have been diagnosed with mild pouchitis and given Cipro to (successfully) treat it.


PRE-surgery I had a very nasty bought of UC, and was on 60mg of prednisone/day during the final year, but I have been essentially drug-free since the j-pouch in 2009.


About a month ago I was prescribed Amoxicillin to treat a jaw infection in preparation for a root canal.  During that week I came down with moderate diarrhea, increased urgency/gas, and very bad smell.  I completed the Amoxicillin (10 days) and then went to my GI with my complaint.  He strongly suspected C.Diff, as I had it once before when I had a colon, and he put my on Flagyll (and ordered a c.diff test). 


The test came back as negative (as did the retest) but after four days of Flagyll my moderate diarrhea/gas turned to very severe pure water diarrhea every hour.  Anything I drank would very quickly leave my body, as if I was doing some kind of colon prep (not exaggerating one bit).  My GI took me off of Flagyll after 4 days and put me on a week of Cipro.


After 1.5 days of the Cipro I was hospitalized as dehydrated, with NO improvement, unable to eat and barely able to sip water. I was in for two days, rehydrated, put on steroids (which.. helped, but they are steroids), and returned home.  I am now on 40 mg/day of pred for 5 days, then 30 for 5 days, tapering down, while finishing up my Cipro course.  My instruction is to start VSL#3 as soon as the Cipro has ended, and continue to pred taper alongside that.


I understand that I have probably destroyed all good bacteria in my gut and need to get it back.  A concern I have is that while I take pred every 12 hours, it only lasts about 9 hours.  Near the end of a dose cycle I have the same basic symptoms as what put me into the hospital.


Do you all think I am on the right track to recovery, with the prednisone taper, and ending Cipro soon?  My Cipro seven-day course ends tomorrow. 





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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.


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





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?



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)..




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.  




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...

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!







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