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Hello everyone!

I’m posting in the hope of getting some advice.

I have had my pouch for 16 years and by and large it has been great, although around once a year i tend to develop what feels like bacterial overgrowth.

I don’t believe it’s pouchitis as the only symptom is massive amounts of wind, i try my best to ride it out, but it tends to open up my fissure and prevents me from sleeping properly, so inevitably i end up taking a 2 week course of Cipro - 250mg twice a day.

This has always worked great for me and gets me back on track and i continue my probiotics.

The last round of Cipro i had i noticed a bit of joint pain in my elbow and hands, it went away after the course was finished, this was late summer 2021

So fast forward to a few weeks ago and the overgrowth appears again, but i’m worried about Cipro, so i managed to get some Rifaximin from my surgeon, but i’m not sure he gave me the right dose.

He prescribed me 200mg x3 times daily for the first 3 days, then just x1 tablet a day for the next 28 days, the first 3 days i started to improve, but as soon as i dropped to 1 tablet a day i started to feel worse, i ended up quitting after a week and now i feel slightly better but i can feel my microbiome is still out of sync, im having alot of painful trapped wind now as opposed to wind that would easily come out, in massive amounts.

So, i can feel it needs more antibiotics to clear it out and rebalance things, but i don’t have many options. Flagyl makes me nauseous, Rifaximin seemingly doesn’t fully work, so i’m just left with Cipro and the risk of side effects.

I wanted to ask, to minimise the risk of further / permanent joint pain or other side effects, am i able to take a shorter course of Cipro? I have some at home and wondered if i could take them for maybe 3-5 days until i feel better? Or do i need to have the full 2 weeks course?

Thank you

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You may need a full 2 weeks course to resolve, you may need periodic 2 weeks courses, or you may need to stay on antibiotics continuously. I was on antibiotics continuously for around 23 years, went off for a few years when I went on Remicade, now back on with Remicade.

There are many antibiotics beyond the 3 you mentioned. For starters, Amoxocillin/Augmentin, Keflex, Vancomycin. Vancomycin is usually indicated for cuffitis but I am on it now to treat pouchitis. There is also Levacquin, same family as cipro but different so it's sort of a cousin to Cipro but the side effects might not be as bad. There are many other antibiotic options.

CTBarrister
Last edited by CTBarrister

Hi CTBarrister

That’s good to know about the antibiotic options, my GP told me there is no more options and my surgeon has never mentioned anything beyond Cipro, Flagyl, and rifaximin, albeit i have never pushed him on further options.

I dont think i would need continous antibiotic treatment, i do go for long periods without needing them, and i think my diet and stress levels probably both contribute the the occasional overgrowth. I had an upper and lower scope a few months ago that showed no signs of inflammation.

I live in the UK so will check if the list you provided are available, thanks for that information.

Im kind of needing to move quick on this, i’ve got a trip to London booked next weekend where i’m going to propose to my girlfriend, so i want to be well for that.

Is it a bad idea to take antibiitiotics such as Cipro for a shorter duration? I usually feel better within 3-5 days, and i don’t have an infection per se, so i was wondering if that’s enough to take the bacteria out whilst minimising side effects?

Otherwise i will have to look into these other antibiotic options

Thanks again

R

The Rifaximin I used had always 550 mg per tablet and I should take it 3 times a day. So you may have a too small dosage. Why not take 2x200 mg 3 times daily for 2 weeks? But you need to ask your doctor of course.

I also wouldn't mind taking Cipro for 5 to 7 days only, I had the combination of Cipro & metronidazole quite often for such a short course.

SteveG

SteveG - Yes after subsequent research i had come to the conclusion that the dose my surgeon gave me was too small, the problem is i dont have enough tablets left to start x3 tablets a day, and it always takes a few weeks to get to see my surgeon, and GP’s refuse to prescribe it in the UK, good suggestion though!

Scott F - Yes i imagine shorter durations can definitely pose a risk. I keep seeing Tindamax mentioned everywhere, i see Dr Shen is an advocate of it, unfortunately for some reason it is not available in the UK.

So after alot of deliberation with myself, i have decided to give Flagyl another try, i have only had it a few years ago for 3 days when i had a tooth abcess, and maybe i felt naseous because of the crippling pain of the infection, it did help my pouch even after 3 days, so worth giving another shot.

I have got a 2 week course at home, so i will start tonight, and also conduct an alcohol experiment with it, i’m aware of the warnings but have also read some people do ok with alcohol whilst on it.

I will have half a glass of wine later and see how i react, this is because i will be proposing to my GF in London next weekend and it would be nice to be able to have celebrate (if she says yes of course)

Thanks again

R
@RB15 posted:

I will have half a glass of wine later and see how i react, this is because i will be proposing to my GF in London next weekend and it would be nice to be able to have celebrate (if she says yes of course)

Thanks again

I can totally understand your anxiety given this very big and important event in your life. It could well be that anxiety over this event is causing some issues. BTW Tindamax as you mentioned is another option and there are probably another 5 or 6 antibiotics I didn't mention that I have used and have now forgotten.

An alcohol test as you suggest above is a good idea, but should that not work well (and white wine is likely more tolerable than red or at least it is for me), another anti-anxiety option is marijuana/cannabis. It's now legal here in Connecticut so I imagine it would be in UK. If so you can try to experiment with the edibles and see how that goes. It may also help the pouch as well, as some people here claim it helps where stress is being indicated as a source of the pouch issues.

Good luck- I am sure she will say yes so try to focus more on making the evening in question a special event all around.

CTBarrister
Last edited by CTBarrister
@CTBarrister posted:

I can totally understand your anxiety given this very big and important event in your life. It could well be that anxiety over this event is causing some issues. BTW Tindamax as you mentioned is another option and there are probably another 5 or 6 antibiotics I didn't mention that I have used and have now forgotten.

An alcohol test as you suggest above is a good idea, but should that not work well (and white wine is likely more tolerable than red or at least it is for me), another anti-anxiety option is marijuana/cannabis. It's now legal here in Connecticut so I imagine it would be in UK. If so you can try to experiment with the edibles and see how that goes. It may also help the pouch as well, as some people here claim it helps where stress is being indicated as a source of the pouch issues.

Good luck- I am sure she will say yes so try to focus more on making the evening in question a special event all around.

Thanks CT!

I’m actually more excited than nervous about London, so i dont think any stress of that is having an effect.

I do have chronic abdominal pain from Irritable Pouch Syndrome and chronic anemia, both of these cause me anxiety and stress and probably exacerbate my bacterial overgrowth.

The chronic pain in particular plays a bit part of stress in my life, it’s like i have got a constant headache in my pelvis, nothing works long term so i feel helpless. I’m considering trying Lexapro to try target my stress and anxiety to see if it has a secondary effect on the pain.

I have been thinking about Cannabis alot lately, it’s not yet legal in the UK we only have CBD oil, even THC is not legal, but i have a few friends who smoke it so i wouldn’t have a problem obtaning some.

Depending on how the Flagyl goes i may need to pick your brains on the other antibiotics, i chose the latter first as it’s tried and tested on here, but if i vomit up the red wine i’ll need other options 😂

Thanks

R

My problem with red wine is the tannins in it- they give me diarrhea.

Marijuana can possibly be helpful in assisting the pain. Doesn't the UK allow it for medicinal purposes? We now allow it in Connecticut for all purposes. In any event, legal issues aside, I think it's a great aid for many people who have chronic pain issues, or stress.

My cousin in law, who is a Vietnam Veteran now in his early 70s and collects a disability pension for PTSD related to the Vietnam War, told me marijuana is the only thing that got he and his fellow soldiers through the war. He was US Army Corps of Engineers and their job was to build road through the jungles for tanks. They were shot at by snipers 24/7. Needless to say, being shot at all day while trying to build roads in a hot, mosquito infested jungle where it frequently rains can be a stressful experience. But it helped him survive and he sometimes uses it for PTSD.

CTBarrister
Last edited by CTBarrister

CTBarrister - Yes i believe in the UK you can obtain Cannabis for medical purposes, but i think you have to jump through hoops, we are way behind you guys on this subject, even CBD wth THC would be great as it would relax me and increase my appetite.

That’s an awesome story about your brother in law, the anecdotal evidence from the public around the world on the therapeutic effects of marijuana are almost enough to not even bother with clinical studies.

I have got no desire to use it for recreational purposes, but i believe my gut / enteric nervous system is highly strung and reacts to any minor change in diet, stress, and i can’t even take Loperamide anymore as i get backed up and in pain even with 1 tablet!

Scott F - I got a bit impatient and ended up taking the Flagyl earlier, for some reason mine are only 200mg to take x3 times daily, it seems on the lower end of dosages but then again probably a good thing given i don’t have full blown Pouchitis.

I’m 2 glasses on red wine in and so far so good, as CTBarrister stated above the tannings gave me diarrhea when i first tried red wine years ago, i stopped and re-introduced it again some years later to find by my pleasant surprise that i can now tolerate it.

Sometimes the pouch needs a few attempts to adapt to things.

Thanks for your help guys 👍🏻

R

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