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Could IC be caused by Chronic Infection?

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  • ejay80
    replied
    It’s good to hear Hiprex is helping and you are making progress. Hiprex is prescribed in the UK by a few UTI specialists to treat chronic UTI. It’s mostly prescribed with antibiotics however some people who are unable to tolerate antibiotics take Hiprex on its own. Thanks for the info about Cystex. I suppose it’s possible to just take Hiprex and pain relief to get the same effect. Azo has helped with me pain also but as I understand it, it may not be safe to take long term.

    In my experience doctor’s opinions seem to differ depending on who you speak to. There has been a recent discussion on Twitter about bladder removal in respect of chronic UTI. Please see @JamesMaloneLee3
    @sheela_swamy
    @chrisharding123

    All 3 Consultants agree that patients with chronic UTI should not have their bladders removed.



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  • neohioic
    replied
    I never heard of bladder being a protective barrier and that if removed problems would happen in kidneys. My doctor says that people who get bladder removal get excellent results regarding the pain. I'm thinking if the pain must be in my bladder cause I get relief from urinary analgesics like phenzopyridium in AZO.

    I took something like a Cystex each day for 2 weeks straight. It has Methenamine but also sodium salicate or something like this which is an aspirin. The aspirin was starting to give me some weird/bad intestinal pain. I would recommend not taking that every day. The HIPREX/Methenamine is still helping me. I would describe it like this, my good days are better than my good days before and my bad days aren't as bad.

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  • ejay80
    replied
    For more information about chronic UTI please follow @JamesMaloneLee3 and @BundrickStewart on Twitter.

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  • ejay80
    replied
    This article contains information about long term full dose antibiotics to treat chronic UTI, C. Diff and the use of Methenamine hippurate (brand name Hiprex) with antibiotics.

    https://link.springer.com/article/10...192-018-3569-7

    Re infection and bladder removal: ‘if the bladder is removed the infection spreads to the upper tracts’. The bladder is an important protective barrier. So the principle is to keep your bladder but get the chronic infection properly treated’.

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  • SBMom
    replied
    thanks

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  • ICNDonna
    replied
    I just googled it and it's available over the counter. Be sure to let us know if it helps.


    Donna

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  • SBMom
    replied
    thanks for the info --- I have heard of Hiprex but you cannot take it while you are taking antibiotics. I've talked to a lot of people who said removing their bladders did not solve the problem!!! Is cystex a prescription?

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  • neohioic
    replied
    Hi, yes I truly believe IC in many people is a chronic infection that is difficult to detect. It is stuck in the bladder wall and difficult to kill with anti-biotics. That is why I believe having bladder removal is a welcome relief to people suffering this condition. I've been suffering over 2 years. I finally found something that is working. It is methenamine. It is also available in prescription in a drug called hiprex. It is not an anti-biotic. It is an anti-septic. When it goes into your urine after taking the medicine it turns into chemicals that kill bacteria. Supposedly bacteria do not gain resistance to anti-septics, only anti biotics. I new this stuff worked when I started taking cystex, which has a smaller dose of methenamine. It was helping alot. The rx dose helps even more. I"ve been on the rx dose for a little over a week. I am not cured but I"m doing much better. Some days I feel like I"m 80-90% better. Other days only 50% better. There is no doubt it is helping me. I don't think bladder instills with dmso will cure the infection either. I think the infection is stuck in the bladder wall, and it takes different ways to kill it. Maybe longterm anti-biotics with different types can fix it but that is risky. I've heard of at least one person on this site who took anti-biotics for 1 year, and it gave her C-Diff. BAsicaly that is permanent diahrea. You don' want that. You would be better off having the bladder removed.

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  • ejay80
    replied
    We've just received a statement from British Society of Urogynaecology which we have permission to share publicly. It will be added to our websites and Twitter very shortly. Together with the recent BAUS statement, CUTIC feels we are at last making a real difference and hopefully change is on the horizon!

    Statement reads as follows:

    We were sorry to hear of your difficulties in reaching a resolution to your chronic UTI problems. We agree this is a serious problem and affects a large number of women.

    BSUG takes Chronic UTIs very seriously because of the huge impact on well being and quality of life and we are committed to raising awareness amongst our members through educational events like the Annual scientific Update and promoting research into this area. In fact this year we have just provided a grant to encourage research into the study of the biome of the bladder and factors that contribute to recurrent and chronic UTIs to allow us to find solutions into this problem.

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  • ejay80
    replied
    The British Association of Urological Surgeons has acknowledged the problems with urine testing and the diagnosis and treatment of chronic UTI, agreeing that the standard technique and microbiological threshold to diagnose a UTI may be inadequate.

    Their letter to us states:

    BAUS has been contacted by several patients in response to recent media attention on the issue of chronic UTI.

    In our role of seeking the best possible urological care for all UK patients, we are naturally concerned to hear experiences/difficulties related to those who are symptomatic in the light of traditional “negative” urine cultures. The diagnosis and treatment of an often debilitating set of symptoms remains difficult and unclear. There is, as yet, no official diagnosis of what a chronic UTI is and whether this might be distinct from recurrent or relapsing UTIs and we recognise the challenge in accurately outlining the differences and/or similarities of these conditions.

    We are very much aware of the work and treatment regimens of Professor Malone-Lee and agree that the classic technique/microbiological threshold to diagnose a UTI may be inadequate as it was developed in the 1950s. Many urologists do realize that new, more sensitive and accurate techniques are required and should be investigated. New techniques are in their infancy and require further assessment to establish diagnostic accuracy before widespread NHS usage. We also would like to suggest that advances in this area would best be brought about by consultation with, and involvement of, our microbiological colleagues.

    We recognize there may be individuals who are symptomatic even without the presence of white cells in their urine – so the significance of this finding is also unclear but probably helps to indicate an underlying infective or inflammatory process. There is also the difficulty of understanding the relevance of detecting organisms in symptomatic patients when they can also be detected in those who are asymptomatic. We now appreciate that the urine in asymptomatic patients is not always sterile, as previously thought.

    The call for long-term antibiotic treatment also has to be weighed against the need for strong evidence that it is effective and that of the risk of the development of antibiotic resistance. There is currently a drive by NHS England to reduce antibiotic usage.

    Two of our leading BAUS urologists in this field – Mr Chris Harding and Mr Ased Ali – are currently working in conjunction with Professor Malone-Lee to address these exact issues, by designing a randomized controlled trial to provide an answer as to how we might best investigate and treat these patients. A trial protocol is currently being finalised with a view to making funding applications in the spring of 2020.

    I would hope to reassure you that we are taking this problem seriously and are working to provide more evidence and guidance as to how we, as urologists, diagnose and manage this challenging and significant problem.

    D J Summerton President, BAUS

    October 2019



    Amendment: Dr Rajvinder Khasriya working on randomized controlled trial

    We want to highlight one small amendment to the statement. The trial is being developed by Rajvinder Khasriya, lead Consultant of the NHS Lower Urinary Tract Symptoms (LUTS) Clinic, Whittington Hospital London, Chris Harding, Consultant Urologist at Newcastle Freeman Hospital, Ased Ali, Consultant Urologist at Mid Yorkshire Hospitals and Doug Tincello, Professor of Female Pelvic Medicine and Reconstructive Surgery, University Hospitals of Leicester NHS Trust.

    Dr Khasriya trained under Professor Malone-Lee and continues to maintain the protocols that he established at the LUTS clinic before his retirement from NHS practice last year.

    The study is currently in the application stage and will be a multi-centre trial which will be critical to give weight to the trial results. We will keep you updated once the trial has received approval and is underway. It is anticipated that the study will last for a year.



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  • ejay80
    replied
    Update from British Association of Urological Surgeons. BAUS acknowledge the problems with urine testing & the need to improve chronic UTI diagnosis. Please follow @cuticuk on Twitter for more info.

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  • SBMom
    replied
    there are several doctors (mostly in the UK) and some on the East Coast of the US who work with embedded infections. If you have Facebook I could give you the links to join several groups that are really informative.. One group actually has a well known urologist as a member. I'm pretty sure we are going to make the drive from California to Shreveport LA where he is so that I can become one of his patients in the next month or 6 weeks. That's his speciality UTIs that never go away!! Lynne

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  • Freddies Girl
    replied
    I have had this wretched condition for 6 years. I woke up back then with the UTI that never went away. I find big similarities with my husband who years ago suffered terribly with a stomach ulcer. He couldn’t eat and drink numerous things without causing a severe flare. Sounds familiar? A bacteria was discovered- helicobacter pylori. A course of 3 types of antibiotics killed it. Years of suffering gone in 3 weeks. Yes I do believe I have an undiagnosed bacterial infection. The trouble is nobody else in the medical profession agrees with me. The antibiotics are there why won’t they just give them to us. We have nothing to lose and everything to gain.

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  • ICNDonna
    replied
    One thing some have found helpful is to keep a detailed diary, noting time of day, everything that goes in your mouth, urinary frequency, activities, pain levels. Sometimes sensitivities can vary and there might be something that's okay for MOST people with IC, but is an irritant for others. I think it's worth a try.

    Sending warm hugs,
    Donna

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  • poolpet
    replied
    Christina, I was diagnosed with chronic bladder infections years ago. I did have bladder infections but I was getting ic symptoms after the infection was gone - so docs were telling me I still had infection and put me on another antibiotic. It is imperative that you determine whether you have infection or is it an IC flare up. you need to have test strips ready for at home testing. Adhere to the IC diet in mean time. I am so sorry for you friend..

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