Could IC be caused by Chronic Infection?

[ejay80 ICN Member Find all posts View Profile Close ejay80]

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’.

[ejay80 ICN Member Find all posts View Profile Close ejay80]

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

[neohioic ICN Member Find all posts View Profile Close neohioic]

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.

[ejay80 ICN Member Find all posts View Profile Close ejay80]

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.

[ejay80 ICN Member Find all posts View Profile Close ejay80]

Question: ‘If a patient with chronic UTI decided to have their bladder removed, rather than persevere with long term antibiotics etc, I assume this would then eradicate the problem?’

Answer: ‘The infection does not obey the boundaries between the bladder, the upper tracts and kidneys. If you remove the bladder the infection will remain but move upwards. We are sent patients in this situation and the effects are calamitous and exceedingly difficult to control.’

[ICNDonna ICN Staff Find all posts View Profile Close ICNDonna]

There are some instances where bladder removal has resulted in total relief and a normal life --- there are also instances where there is phantom pain after removal, which means that the body doesn't recognize that the bladder is gone and the nerves continue to transmit pain signals.

And...There are some instances where long term antibiotics has been the answer to total relief --- there are also instances where the result was that individuals developed antibiotic-resistant infections that can be extremely difficult to handle.

There are many, many questions about IC treatments --- I encourage everyone to do their research when considering treatment options --- every possible treatment has both positives and negatives --- we have to do our research and weigh the alternatives before making decisions.

Our sharing our experiences can be a huge help to people making those decisions. Thank you to all of you for your input.

Sending warm hugs,
Donna

[neohioic ICN Member Find all posts View Profile Close neohioic]

I chatted with a guy who had his bladder removed after nearly 10 years of fighting. After it was removed he had total relief. He was happy he did it, he says though he has some new challenges with living with a bag but it isn't that bad. I met with the surgeon before, and they recommend having the bag versus and indiana pouc h or neo bladder. They say that because there are less chances of pain with having the bag and it is simpler. I belief it is just some type of infection type problem on the inner wall of the bladder, and if it were removed so would be the pain. That is my situation I think atleast.

[ejay80 ICN Member Find all posts View Profile Close ejay80]

To clarify, I am talking about the risks of bladder removal solely in respect of chronic urinary tract infection. Although chronic UTI should always be properly excluded before bladder removal is considered. NB Previous posts contain statements from the relevant UK bodies confirming that dipstick and cultures are unreliable for diagnosing UTI.

[neohioic ICN Member Find all posts View Profile Close neohioic]

I agree, I think my case of IC is some type of chronic infection. I feel better on bactrim anti-biotics when taking them, but then after I'm off I feel bad again. I"m getting some real help from this Hiprex drug most of the time. I basically think that in my case it is hard to get rid of it.

[ejay80 ICN Member Find all posts View Profile Close ejay80]

I think you’ve reached a sensible conclusion given that abx and Hiprex have helped. It’s often the case with chronic UTI, I’ve had it for many years but only more recently got it properly diagnosed. I take full dose long term antibiotics. I’m unable to tolerate Hiprex at the moment but will look to take that along with antibiotics at some point.

Neohioic whereabouts to you live? There is a UTI specialist in the US (Stewart Bundrick) and a few in the UK. The protocol is to use full dose long term antibiotics and Hiprex until the infection has cleared. The length of time it takes to clear varies from person to person.

[neohioic ICN Member Find all posts View Profile Close neohioic]

Hi, I"m in Ohio. So how long have you been on long-term anti-biotics? Were they ever able to culture anything? If so then I guess they would put you on the correct anti-biotic for that bacteria. If they haven't cultured anything are they using full-spectrum anti-biotics? When I'm on bactrim which is a very strong full spectrum anti-biotic the pain is basically gone after a couple days. I can't be on that forever though. I have heard of people getting C-diff which is very serious from being on anti-biotics too long. Does the hiprex make your bladder feel irritated? I feel like it is bothering my bladder lately. I was thinking of trying to stop for a day or 2.

[neohioic ICN Member Find all posts View Profile Close neohioic]

Hi ejay80, have you seen this doctor Steward Bundrick? Does he actually look at the urine under a microscope after you give a sample? It is far away from where I live but it is do-able if he could really help.

[ejay80 ICN Member Find all posts View Profile Close ejay80]

Hi, so sorry for the delayed reply. I’m in the UK, I have been Professor Malone-Lee’s patient since March 2017. He confirmed that I have chronic UTI by listening to me explain my symptoms and by using a microscope to count epithelial cells and white blood cells. He doesn’t use cultures as they are proven to be unreliable. Mine came back negative even though I had all the hallmarks of infection. I had a cystoscopy and the result was also normal.

I have been on antibiotics since March 2017. I have taken narrow and broad spectrum antibiotics. However, most patients are treated with full dose narrow spectrum antibiotics and recover more quickly than me. I have had chronic UTI for over 20 years and I think I’m a more complicated case. So far I have tolerated the antibiotics well. Everyone is different though. Some people struggle with tolerance while others don’t.

Hiprex makes the urine acidic so it can aggregate an already inflamed bladder and urethra. My main symptom is persistent burning so that is why I’m unable to take it at present. I will try again once the inflammation has settled. PML advises that I should test it from time to time.

I don’t know a great deal about Stewart Bundrick (I think his treatment is similar to PML) but some of his patients are on a Facebook support group called Embedded UTI Support/Advice Group. There is also a US branch of this support group. I will let you know the name of it once I find out.

[neohioic ICN Member Find all posts View Profile Close neohioic]

Hi thanks for sharing that and thanks for sharing info about the embeddeduti support group. I'm glad you are raising awareness regarding what this condition really is in most people I believe who are dealing with that terrible pain. The more people understand the real problem the better the chance to fix it. I"ve been continueing to get alot of help from the hiprex. Most of the time I"m not in pain.
But when I"m in the pain it gets me down because it is bad. It is much briefer though the pain and typically less severe. Wow 20 years is a long time to be suffering. Does your bladder look good on cystoscope? Do you have a small bladder capacity? My bladder capacity is good and I don't have frequency. The hiprex is helping greatly. You may have to deal with some burning on the hiprex but it will probably be best in the long run. I"m so happy I found this. I've been suffering for about 2.5+ years but lately I have been doing much better.

[neohioic ICN Member Find all posts View Profile Close neohioic]

Hi Ejay80, so with taking the antibiotics so long, do you think you might be cured if you stop? Or do you still have some symptoms even with the anti-biotics? Can you mention which anti-biotic you are on ? If you have been on it 2+ years and it doesn't affect you negatively then it must be ok I would think. I've heard of people who got C-diff from being on anti-biotics too long. Maybe they were on full spectrum anti-biotics. Can I ask are you male or female? I'm one of the unfortunate men dealing with this. I"m wondering if my prostate is involved. My pain is from the front though.