Announcement

Collapse
No announcement yet.

Could IC be caused by Chronic Infection?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • jen74
    replied
    Originally posted by ICNDonna View Post

    I'm so sorry for what you have experienced and are still having problems. I hope that when you have totally healed from your surgery that you will feel better. It sounds like you had a major surgery that could take at least six to eight weeks to recover.

    If you feel you may have a potential for infection, I've read some good things about D-Mannose as a preventive --- I've never taken it, however --- so I don't really know for sure.

    Sending well wishes,
    Donna
    Hi Donna,

    Thank you! Yes I actually take Dmannose daily( have been for years now). I am praying things calm down. Right now my bladder is very unhappy...

    Leave a comment:


  • ICNDonna
    replied
    Originally posted by jen74 View Post
    I was diagnosed with IC back in 2006. I am one that was helped immensely by antibiotics. I tried every treatment available for IC and nothing helped.. I ended up being put on low dose antibiotics ( keflex) for like over two years. It was the only thing that helped my bladder. However, I will say, I eventually became resistant to it( bacterial resistance) and it stopped helping. Being on antibiotics long term also messed up my microbiome of my gut causing leaky gut and other issues. There are risks when taking long term antibiotics. I finally managed to get my IC under control( not even sure how), but it was pretty Good for a few years. I did develop gynecological issues though in the last three years( Adenomyosis, fibroids, Endometriosis) and had to have surgery 4 weeks ago ( laparoscopic hysterectomy with Endometriosis excision). Well, that has woken up my IC again. It's very disheartening to say the least. I have had three urine cultures done to check for UTI and every one has showed growth of Lactobacillus Lactobacillus species 10,000 - 50,000 counts. They say this is normal bacteria found in the vagina so they won't consider it a UTI and just say it probably was contamination from the vagina. I am not sure if this is an infection or not though. I mean I'm having symptoms and it feels like a UTI. It's very frustrating. Here is the thing, us who have IC from hidden bacteria, well there is an underlying reason going on in the body causing this bacteria are able to take hold and cause inflammation. The bladder is an innocent bystander.
    I'm so sorry for what you have experienced and are still having problems. I hope that when you have totally healed from your surgery that you will feel better. It sounds like you had a major surgery that could take at least six to eight weeks to recover.

    If you feel you may have a potential for infection, I've read some good things about D-Mannose as a preventive --- I've never taken it, however --- so I don't really know for sure.

    Sending well wishes,
    Donna

    Leave a comment:


  • jen74
    replied
    I was diagnosed with IC back in 2006. I am one that was helped immensely by antibiotics. I tried every treatment available for IC and nothing helped.. I ended up being put on low dose antibiotics ( keflex) for like over two years. It was the only thing that helped my bladder. However, I will say, I eventually became resistant to it( bacterial resistance) and it stopped helping. Being on antibiotics long term also messed up my microbiome of my gut causing leaky gut and other issues. There are risks when taking long term antibiotics. I finally managed to get my IC under control( not even sure how), but it was pretty Good for a few years. I did develop gynecological issues though in the last three years( Adenomyosis, fibroids, Endometriosis) and had to have surgery 4 weeks ago ( laparoscopic hysterectomy with Endometriosis excision). Well, that has woken up my IC again. It's very disheartening to say the least. I have had three urine cultures done to check for UTI and every one has showed growth of Lactobacillus Lactobacillus species 10,000 - 50,000 counts. They say this is normal bacteria found in the vagina so they won't consider it a UTI and just say it probably was contamination from the vagina. I am not sure if this is an infection or not though. I mean I'm having symptoms and it feels like a UTI. It's very frustrating. Here is the thing, us who have IC from hidden bacteria, well there is an underlying reason going on in the body causing this bacteria are able to take hold and cause inflammation. The bladder is an innocent bystander.

    Leave a comment:


  • ejay80
    replied
    Hi Neohioic, cystoscopy and capacity came back normal. I was in constant agonising pain that no one could explain because of false negative test results.

    I’m definitely not cured yet unfortunately although overall I’m better than I was before treatment. I have mild symptoms with flares while taking antibiotics. My WBC count is still up and down also. It is my understanding that the right antibiotics kick start the immune system which then starts to fight the infection, hence raised epithelial cells and WBC. My immune system only kicked in last year. I’ve taken various antibiotics continuously since being diagnosed in March 2017 which include narrow spectrum, broad spectrum and a Fluoroquinolone. So far I haven’t had any side effects. I’m currently taking cephalexin and co-amoxiclav. I’m hoping to reintroduce Hiprex at some point to take alongside the antibiotics. I’m female but know of men being treated for chronic UTI. There was a discussion today on Twitter about protatitis. There are men that are members of the Facebook Embedded UTI Support /Advice Group. There are also US patients being treated by Stewart Bundrick that can provide feedback. There is also a US group which can be accessed by contacting JL Price or Kat Crowson.
    Last edited by ejay80; 12-22-2019, 01:51 AM.

    Leave a comment:


  • neohioic
    replied
    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.

    Leave a comment:


  • neohioic
    replied
    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.

    Leave a comment:


  • ejay80
    replied
    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.

    Leave a comment:


  • neohioic
    replied
    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.

    Leave a comment:


  • neohioic
    replied
    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.

    Leave a comment:


  • ejay80
    replied
    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.

    Leave a comment:


  • neohioic
    replied
    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.

    Leave a comment:


  • ejay80
    replied
    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.

    Leave a comment:


  • neohioic
    replied
    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.

    Leave a comment:


  • ICNDonna
    replied
    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

    Leave a comment:


  • ejay80
    replied
    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.’

    Leave a comment:

Working...
X