Viewing 15 posts - 1 through 15 (of 190 total)
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  • Pam
    Participant
    Post count: 52

    The reason I am posting this is to put Interstitial Cystitis (IC) on the compass in this forum. I have been dealing with this disease for 10 years. The chronic pelvic pain and urinary frequency have significantly ruined a good portion of my life. Not until I had a colonoscopy and started researching how the bowels and bladder have a connection did I discover that SIBO could be my problem all along. I was tested and was positive for SIBO. Treating SIBO is another monster in itself there is so much speculation, so many diets, and have been to nutrionists that have helped somewhat. Most push for Paleo and I cannot handle that much meat. Also interesting is that SIBO people probably also have low stomach acid. So I also found that Type A blood types, and that is me, also have low stomach acid. Everything in the IC diet was counterproductive in that the diet pushes for low acid everything and so I was just getting worse. Also, the IC Network has nothing on there about SIBO so really a disconnect there.

    Anyway, nothing has helped me more than addressing SIBO. I am getting so much better and this happened within about 4 months of the diet. I have a long way to go still, but today I am not on any drugs and am actually healing.

    Thanks so all for the great research on SIBO.

    Norm Robillard
    Keymaster
    Post count: 441

    Hi Pam, So great to have you posting here. Thank you for sharing your journey on healing. Hopefully your experiences and knowledge can make an impact in helping others with IC. How have you been addressing SIBO?

    Pompadur
    Participant
    Post count: 39

    Hello, Pam! Your history is very interesting. Actually, before my GERD issues i have had Interstitial Cystitis for a year. I managed to make it subside with homeopathic pills.But then GERD appeared and this is not so fast to go unfortunatelly.

    So maybe these issues are really all connected to SIBO? Very nice to know that the worse health issues are linked to little creatures…SIBO has so many faces:(

    Pam
    Participant
    Post count: 52

    Addressing SIBO. Went thru the regular protocol. Rifaximin, made me feel a little sick, then went on Berberine and Allicin (herbal antibiotics), then really watch my diet. So confused over which diet tho. Norm’s book really helped me with this understanding the fermentation factor. I also take a digestive enzyme with each meal. Also drink my daily sludge which is made from a VegaSport (contains L-Glutamine and digestive enzymes) and add coconut milk, plus a big handful of veggies and berries and grind this all up in my cheapo blender with my other supplements and drink throughout the day. I think the sludge has really helped me. I have not been retested for SIBO since antibiotics but I feel better than anything else I have tried for over 10 years; truly remarkable.

    Others that have IC or any pelvic Pain or Fibro issues may want to reference the Turnbull Study “Systemic Signs of Underlying Digestive Dysfunction and Disease” this 30 page report has some interesting findings of relationship with SIBO and these diseases and a good one to take with you to the doctor.

    Norm Robillard
    Keymaster
    Post count: 441

    Congratulations on your tremendous improvement Pam. Your story is an inspiration. Maybe you should market your morning blend. Sludge would actually be a pretty cool name to use.

    ftder
    Participant
    Post count: 210

    This is SUPER exciting to read. I too have IC, and I work with a holistic Dr., Dr. Matia Brizman, who recognized the relationship between IBS, SIBO and leaky gut, 20 years ago (yes, 20 years ago) and has been using an integrative approach using Classical Chinese Medicine, probiotics and a diet that controls for inflammation with very good success. You can buy her dissertation on line. A bit dense and her thinking has evolved but it is still an interesting read. Also the model of health and disease in chinese medicine is a 180 from the way it is viewed in the west. Her route is a tough one, (NO sugar, alchohol or yeast, vinegar or fungal foods while healing) and she slowly introduces foods back in but advises to never go back to daily sugar and alchohol. She takes a VERY holistic approach to treating IC and she sees SIBO as only one part. Some of the issues that Dr. Robillard touches on in his IBS book (gut motility, etc..) are addressed from a Chinese Medicine perspective in her practice. The questions to ask with a serious chronic illness such as IC (which by the way has many comorbidities including Fibro, CFS, GERD, Arthritis, neruological issues, etc…) is what were the pre-existing conditions in the body, such that SIBO and other imbalances were allowed to occur? If one looks very carefully back through there personal medical history one can find all kinds of predisposing factors that would prevent the body from working optimally and would create an environment for disease. This would include early exposure to antibiotics as a child (See the book Missing Microbes, by Dr. Martin Blaser), chronic use of chemical birth control, which dries out mucosal tissue from tip to tail, creating a breeding ground for bad bactieria; stress in early childhood, leading to constipation or diarrhea, steroids, NSAIDS, overuse of “natural” herbal products that are too harsh or cleansing, long term vegetarian diet (sorry, but this is a pattern she sees often), disordered eating (skipping meals, eating too many carbs at meals, anorexia, bulemia). All of these things contribute to chronic illness, and if one has a predisposition for a weak kidney/bladder then IC can result.

    Pam
    Participant
    Post count: 52

    So excited to get a post on this. I really need to link this up to the IC Help page. Not sure how I got SIBO could have been multiple things. All I can say is I do have it and addressing this is the only thing that has SIGNIFICANTLY helped my 10 year struggle with IC. Probably the most prominent document about IC/SIBO connection is the Turnbull Study. Its about 30 pages long and can be found on the internet. I found by just Google IC+SIBO. Also what is interesting is that of those that have fibro, 100% tested positive for SIBO. There is a significant connection between the electronic signals between the bowel and the bladder.

    What is even worse is I know a lot of people struggling with IC thru my group and have really pushed getting the SIBO test at minimum it is so much easier to potentially rule out this possibility. The tests and all the stuff they put you through to fix you is painful, despressing and expensive. I was literally days before agreeing to a very expensive, invasive surgery that ultimately would not have done anything for me.

    And, the IC diet is soooo acid buffering. Take all these antiacid stuff, alkalinize the body and on and on. Telling you these foods are ok and which ones or not okay. The problem is, if you do their diet, it is almost opposite of a SIBO diet! You just get worse, no matter how much you follow it.

    And since my last post, my 22 year old daughter, also about to go thru exploratory surgery for chronic pelvic pain, just tested positive for SIBO and a good friend of my 8 years of undiagnosed diarrhea finally tested for SIBO and is positive. First diagnosis yet that she had ever had. Really interesting stuff.

    Pam

    ftder
    Participant
    Post count: 210

    Pam I TOTALLY AGREE that the western “IC” diet is useless. One thing that Dr. Brizman recommends is to be warry initially of high vitamin foods such as extra virgin olive oil. This is not forever, but can cause a lot of pain when there is already a pain/inflammtion process underway in the body. Things like flax and oatmeal are really irritating to the gut and should be avoided until fully healed.

    Pam, how long until you started to get some relief from you symptoms? Could you please describe your trajectory of healing? I have been working with Dr. Brizman for two years and my bladder is a lot better, but my constipation and bloating are VERY stubborn.She says this is from dysbiosis. She is also treating me for candida overgrowth along with the SIBO, the two seem to go hand in hand. I am only really on day 2 of the diet, which is not too fare from her diet, except to pay more attention to the type of rice I am eating (NO rice cakes, no whole grain spelt bread, no apples) I have maybe a small reduction in gas, so I am hopeful.THanks so much for any thoughts. I would say we should be in touch off line, but I am not sure how to do that through this forum as it does not have a seperate private contact form.

    ftder
    Participant
    Post count: 210

    Pam, I would also add that for most cases of IC, to be honest and with respect, what is the point in testing for SIBO? It is highly likely that most of us have it. This diet is pretty darn easy to follow and worth a shot for a good solid 2 or 3 months for ANYONE with IC!! In addition, if you google a good list of Candida symptoms, my IC doctor has found that nearly EVERYONE has candida also. So in my opinion it is REALLY important for symptom reduction and GUT HEALING to cut out SUGAR (and alcholol for a while, especially in the presence of candida) The problem with treating candida effectively is that it requires strong antifungals which can be very hard on someone with IC that already has a lot of inflammation. This is why it is important to work with someone like Dr. Brizman ICAMA.org.

    ftder
    Participant
    Post count: 210

    There are just so few doctors out there with a track record for healing from this imbalance. Dr. Grant in London is having some success. And Dr. Chris Decker in the US. Those are the only 3 doctors. Also, some naturopathic doctors can get people mostly well but are not as familiar with treating IC holistically as the three I have mentioned.

    ftder
    Participant
    Post count: 210

    Pam another thought is that between all the exposure risks I listed for IC and chronic pelvic pain, your daughter also recieved some of your flora, via the placenta and also vaginally if you had a vaginal birth. It is not suprising that she has pelvic pain but she too would benefit from a holistic approach. I wonder if that could be explored before surgery???

    Jaeme
    Participant
    Post count: 348

    Wow! Thanks for posting – one more connection I did not put together until reading this. My path to the FTD was LPR caused by a combo of heavy dose of Cipro broad-spectrum antibiotic and eating a lot of whole grains about 3 years ago. The FTD diet not only 99% eliminated my LPR but also cleared my rosacea. I now realize that I started having IC symptoms about the same time the LPR started. After reading this post, I realized I have had no IC symptoms since beginning the FTD 10 months ago. I am convinced all of this is connected, and Norm’s research along with postings on this forum seem to back this up. Norm is really on to something here!

    ftder
    Participant
    Post count: 210

    THANKS Jaeme!!!! Wow that is so exciting! THANKS for letting us know of the connection! Norm, honestly this is hugely exciting. I just started on the diet myself and am still having gas and bloating but it has only been two days. Wondering if I need to cut out rice completely at first to give myself a jump start.

    Jaeme, also, are you able to enjoy alcohol in moderation now that you have responded so well to the diet? That is something I miss far more than sugar! Tx for any thoughts.

    Pam
    Participant
    Post count: 52

    BearsMom – I think the resistence to testing for SIBO for those with IC is that they probably thought like I did…wow, your bowels are connected to the bladder? They are so convinced it has nothing to do with the bladder. It is the loss of the epithemal layer in the bladder that is causing the problem and so I must take all these bladder layering supplements and then there is Elmiron, thats about 200 bucks a month right there, yeah, thats gotta work. And, why has my doctor not said anything about this, and when I talk to my doctor they have no idea what SIBO is? The reason your doctor has said zero about it is they don’t know either! It is a idiopathic disease. this is why you take the documented information into the doctor and say here is something we have not looked at. Why does the IC Network not really have any reference to SIBO?

    Also, the SIBO diet as I mentioned earlier is different than the IC diet. Its like when I tell someone that has acid reflux that you don’t have enough acid in your gut and to quit taking antiacids, maybe consider hydrochloric acid instead? They think I am crazy until I tell them you have reflux because your gut does not have enough acid to digest what you just ate and so it spits it all back out…then they start to think.

    For ICers the DEPRESSION and chronic pain is all they are thinking about. They have not been clinically diagnosed with SIBO and until then, they keep doing the same thing and not get anywhere…isn’t that the definition of insanity?

    As far as my healing, it is a long story and I did go on antibiotics and tried all the SIBO diets and took digestive aids and drink what I call my daily sludge…it was a work in progress…two steps forward one step back. By about 3 months I actually could poop normally, never knew what that was, and would not have to pee constantly. I was very, very sick and I am not 100% healed but I am mostly out of pain and not peeing all the time.

    ftder
    Participant
    Post count: 210

    Pam yes I agree with everything you say. Thankfully there are a few docs that see this as a GUT DISEASE That it is. Here is Dr. Chris Decker on IC (IF I were you I would get under her care, or Dr. Brizman’s. We should find a way to connect so we can discuss more):
    Interstitial cystitis and vulvodynia both wreak great misery, which is too bad, because they’re both eminently treatable once one understands what causes them. Anybody who’s ever suffered from either of these things probably doesn’t need them defined, but just so we’re all on the same page, “interstitial” means between cells (of the bladder in this case) and “cystitis” means bladder inflammation. “Dynia” is a suffix meaning pain.

    To understand how interstitial cystitis and vulvodynia start, we have to look at the gut.

    The thing that gives rise to interstitial cystitis and vulvodynia is the same thing that causes so many other ills, namely, a dysbiotic, inflamed gut. This is so because because the ultimate result of such a scenario is a sieve-like intestinal wall–a leaky gut–through which toxins can pass into the bloodstream, where some of them must eventually be filtered by the kidneys. From there, toxins reaching the bladder cause inflammation, the condition known as interstitial cystitis. There are many things that can throw our gut flora out of balance, including antibiotics, oral contraceptives (which decimate gut flora), processed foods (which feed abnormal gut flora), various toxic exposures from food and environment, radiation, excessive alcohol consumption, food sensitivities (such as to gluten. casein, or anything else), and, certainly, a carbohydrate-heavy diet (especially when insulin resistance or any other kind of dysglycemia is the result).

    Abnormal microbes in the gut mean abnormal microbes elsewhere, including the vagina, urethra, bladder, and groin in general. The vagina, urethra, and bladder normally are populated mainly by Lactobacilli, particularly L. crispatus and L. jensenii. These bacteria produce hydrogen peroxide, which, because it lowers the local pH, prevents potentially pathogenic bacteria from adhering to the mucosal walls. Without the protection of these Lactobacillus species, bacterial infection can ensue much more easily.

    But interstitial cystitis is not an infection. It’s an inflammation. When normal flora are present, they produce sulphated glycosaminoglycans, or GAGs, which provide a viscous, mucous coat to the inner wall of the bladder, protecting it from harm. Naturopathic supplements that are used to treat the symptoms of interstitial cystitis almost always contain something to help restore the normal GAG layer, substances like n-acetyl glucosamine (NAG) or glucosamine HCl. Such medicines often also contain herbal demulcents like corn silk, which coat and soothe the bladder lining. Pre-formed vitamin A is always a useful healing agent anytime epithelial tissue pathology is involved, as it is here. Because urine nitric oxide synthase is decreased in interstitial cystitis, with consequently decreased urine nitric oxide levels, L-arginine, a precursor in nitric oxide synthesis, is often beneficial.

    While these strategies typically quickly relieve symptoms and bring welcome relief from pain, of course we must also look to the deeper level of treating the true cause of the symptoms, namely, the dysbiotic gut. In my practice I use a paleo/primal/GAPS approach, which I find very effective. It’s important to identify and eliminate food sensitivities–not allergies, but sensitivities–that we may be completely unaware exist. It’s important to use foods that will heal and seal the gut wall, and to eat in ways to which we are genetically adapted. And, especially with everything else in place, homeopathy can be dramatically effective at relieving the symptoms of interstitial cystitis and vulvodynia. I’ve seen the most distressing chronic pain turn off almost like a light switch, usually at least within a few days, sometimes within hours.

    So, to conclude, if you or someone you know is dealing with interstitial cystitis or vulvodynia, please pass the word and know that this lousy, miserable condition does indeed have effective treatment and that it’s very much within reach.

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