Hi all,

I have had my pouch since 2012 with pretty much constant pouchitis of some degree. I had a rough surgery recovery years ago with lots and lots of tries with antibiotics and steroids that always seemed to make things much worse. I am happy to say that with A LOT of diet and lifestyle work and repair over the years I've gotten things to a more tolerable level of "ugh"... A.K.A. I do not by any means feel great, but I am "better" than I was on the medications, and now I actually can sort out symptoms vs side effects. My most recent scope showed to be the best it has in years! 

About 2 months ago I was hospitalized with "sepsis". They never tested me for salmonella as far as I know, but Dr Shen seemed pretty damn confident that was it when I saw him recently. He said it can be a very slow growing culture to show positive in tests. I had horrible night sweats, high fever, high heart rate, lightheaded, etc for 15 days...pouch symptoms didn't seem too bad, but they were increased. I'm very used to pouchitis and the overall feeling of death definitely out shined the pouch issues at the time! I was loaded up on IV antibiotics in the hospital (zosyn and vanco) and sent home with 4 days of augmentin - which I had never taken before. I was definitely having anxiety thinking about what the antibiotics were doing to my gut but I'm so thankful for those meds - I felt near death and they saved me.

Some background info - I was c-section born and bottle fed as a baby. I have never been able to tolerate probiotics well - they have always caused a large increase in gas, bloating, frequency + urgency, painful/incomplete BM's...

With all the mega antibiotics I was on recently I thought it was important to try to reintroduce probiotics, so I began using Natren LifeStart (bifido strain for infants, suggested by a functional MD years ago as a good entry-level probiotic for someone with my history, but I had problems tolerating them then). This time I immediately noticed a decrease in gas/frequency and more formed stools. I thought for sure the antibiotics gave my system a full 'reset' and I could in theory re-colonize the gut with some good bacteria. I very slowly increased the dose to 1/4 tsp 2x/day (which is still a super weak dose!) and have slowly had worse days and nights. I stuck with it but an increase in the usual gas, frequency, anal itching, etc. keeps me awake for HOURS at night. I skipped the probiotics yesterday and had a much better night so I definitely think they are to blame. 

Has anyone else had such a sensitive and negative reaction to probiotics???? It's like I just crossed over that 'sweet spot' where my pouch functions great. Any similar experiences or advice??

 

 

Original Post

I uses to find probiotics really helpful (rice Bio-K usually. but even a nice kombucha would make a difference), but then i got pregnant and suddenly they made me feel like i was being poisoned. I could not stand the thought of them. So I stopped, and still when I try bio-k it makes me feel awful. but Better booch kombucha makes me feel pretty good. But it has a lot of sugar. I have ZERO idea if any of this is helpful! Just to say it all seems to be in flux. Sometimes they are helpful, sometimes not. I used to take them when I was on anti-biotics for pouchitis (cipro and Flagyl. I now refuse to take flagyl it makes me feel so awful I want to tear my skin off!).  But now I don't! i have no idea!!!

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