When will this stop...

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Hi All

Been diagnosed for a few years now but just before Xmas started suffering terrible D. No reasoning and no warning !! Left it till after Xmas and went to Dr who said it was probably a flare and gave me Co Amoxiclav. I asked for Cipro as this has worjed in the past but was told the other was the antibiotic if choice.

Took medication which kicked in after a few days and felt better. After anti biotics it came back...more Co Amoiclav again I asked for Cipro.

Same scenario it's back again...im not in pain just really bloated, grumbling stomach. Just don't feel well and so exhausted with no energy. Back to Dr tomorrow. Any advice greatly appreciated as I just feel weak. Thanks

A x

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15 Replies

  • Posted

    Did they do a CT with contrast to be sure you didn’t have a rupture or perforation. Did they draw blood work to look at your CBC? 
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    • Posted

      I had a blood test they said it showed inflammation but not lots.

      I'm not in pain just uncomfortable.

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  • Posted

    I have taken amoxicillin and it did not work and I had to be admitted to hospital after 7 days on it.  I was supposed to take for 10 days...the pain was so bad . I had flare ups many times and only Cipro works for me and metronidazole.  I feel your pain.  You know your body.  If you don’t have pain give it a few more days but if it persists insist on Cipro it go to another doctor.  I know amoxicillin isn’t as upsetting as the latter but it works!  Good luck. 🙏

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    • Posted

      Hi Madeline

      Thanks for your reply. It's difficult to make them understand after all they are meant to be the professionals. I am going back tomorrow but have concerns about a 3rd course of antis.

      Ax

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    • Posted

      I guess a wait and see.  Hopefully you’ll start to mend. Stay on a low residue diet for a few weeks. Good luck.😘

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  • Posted

    Antibiotics can make you feel terrible for ages afterwards and give you diarrhoea.

    If you aren't in pain I would stay on a low residue diet and wait and see .

    Get plenty of rest and drink plenty of water.

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    • Posted

      Hi Linda

      Thanks for replying I am horribly bloated and gave pain in my back both sides round to under my ribs. Feels like a strain but can't be...glad I am seeing Dr tomorrow.

      Have tried to soldier on so not had much rest despite being exhausted. Maybe I should have a day in bed.

      A x

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  • Posted

    Hi Allyson,

    The reason they won't give you Cipro 'on demand' is that it is a really dangerous drug!  Are you in the US?  In July 2016 the FDA made a ruling about Cipro and the other fluoroquinolones (advising doctors not to hand them out routinely) and gave them yet another black box warning.  They don't do this lightly.

    Cipro worked for you before but it also started to create a little damage in every cell in your body (it damages all your cells at the same time as it's killing both the bad bacteria - and good bacteria).  If you take another course of Cipro it's possible that this damage you don't even notice yet will expand into something that will ruin your life.  People have been hit  with a multitude of problems that last for months or years and some are  left permanently disabled.  On this website go to the discussion forum called fluoroquinolone antibiotics and readsome of the posts -  you will soon see what I mean.  If you understood what harm Cipro can do you will be grateful that you've been given an alternative.

    Take care - every single one of the thousands of people who have been damaged by Cipro either didn't know or thought it would never happen to them.  It did and I'm married to one of them.

     

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    • Posted

      Hi Miriam,

      I understand you are compelled to address the antibiotic Cipro because of past experience but having said that you must also make note the possibility of one of us not getting the correct antibiotics can do.  Because of my fear after reading about Cipro and your persistence I too hesitated and took another antibiotic which did not touch the infection and I ended up in the hospital where yes they put me on Cipro because not having knocked out the infection I became worse.  Warnings are good but if you have no choice whereas a possible abscess or worse I think the person should make their own  decision based on their actual condition and not fear.  I wish we never had to take antibiotics at all but sometimes we do and as you may know everybodies body reacts differently and there is not an easy answer that helps one a decision regarding their health.  Placing fear on  someone who is so sick is not the answer.

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    • Posted

      Excellent posts, well reasoned and argued, both based on experience.  My GP also no longer prescribes the UK equivalent of Cipro, which disconcerted me at first, but he gave his reasons.  I've yet to need to take the alternative he now prescribes, so my jury is out.  I remember there is one of the nasty illnesses, something like Lassa Fever, where the only effective treatment is almost worse than the illness, and of course chemotherapy is a poison.  At the end of the day, like everything, it's up to the individual.  Best wishes to both of you.

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    • Posted

      Hi Miriam

      Thanks for your reply. I have read the side effects of Cipro (I am in the UK) and understand your concerns.

      However, I will never turn down the chance of Cipro as I know it works for me...ratger than 2 x rounds of Co Amoxivlav that havnt worked which will probably result in being given Cipro later anyway. The results being 3 rounds of antibiotics instead of just one.

      Every drug we take has the potential to hurt us...

      Ax

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  • Posted

    Hi Allyson - also Hi to Madeline,

    I can only say I'm sorry that, because of your condition, you find yourselves caught between a rock and a hard place.

    Cipro and the other fluoroquinolones were designed (they are synthetic) to deal with life or death illnesses such as anthrax.  They became very popular because they can deal with just about anything and for the last 17 years or so there have been hushed-up battles to get the dangers recognised.  The warnings and lists of side effects have steadily increased so that people can no longer try and sue over a ruptured tendon, for example.  The recent FDA move to limit their use is working to some extent and here in the UK the Antimicrobial Stewardship scheme has also led to a reduction in their use - mainly because of the danger of C.Diff managing to take hold in a gut that has been cleared of other flora.  (Cases of C.Diff rose along with Cipro usage).  Many people are calling for FQ use to be restricted to life or death cases - the serious situations for which they were originally developed.  Your situations might perhaps be included in this category.

    I apologise if my warnings have caused you to fear and make decisions that have turned out to be wrong.  I do suggest not to take Cipro, especially if someone has already taken a course of it, for the reasons explained in my previous post.  I hope it's clear to anyone that I am not a doctor and, as you say Madeline, everyone's body is different.  I am making my suggestions based on experience and would hope that anyone reading my posts is able to add what I say to the information they already have and then make their decisions accordingly.

    My experience is that every person I've read about that has been harmed by fluoroquinolones always says they wish they had been warned.  Yes, warnings are in the leaflets but yawn, yawn, who reads them anyway?  Real life experiences of people tell the whole story - which is why I suggest visiting the FQ discussions on here.

    The chances of having adverse reactions aren't really chance, it depends more on your genetic make up and your exposure to other drugs and toxins previously.  Some people have a reaction immediately or in the first couple of days, others don't notice anything at all until they are on their third or fourth course.  I read about someone on here who reckoned she'd had 50 courses in total before anything happened. 

    I will heed your warning and tone down what I say as it is obviously not my intention to cause fear or potential harm.  On the other hand, I come across many people who have never heard of the dangers of this class of antibiotics yet I also know that affected people just wish that someone had taken the trouble to warn them.  I, too, find myself caught between a rock and a hard place.

    I wish you both well and genuinely hope that you both manage to find a way to live without needing antibiotics to control flare-ups etc. 

    Take care xx

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    • Posted

      Well said. Hopefully no one takes 50 courses of this or any other drug but you are right better to be warned. Thank you but remember we really don’t want to take any antibiotics but as you said we are between a rock and a hard place which I wish we weren’t. 😊 I know your intentions are in a good place.

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    • Posted

      With my flare up, Flagyl / Cipro made me feel worse-GI surgeon switched me to Augmentin, which worked well.  Just putting that out there.  With my first flare up, I had perforation and sepsis, so scans every 3 days to watch it.  Good luck and best wishes to find something your body responds well to. 
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