Understanding Chronic Debilitating IC and 5 Things to Do

In the practice of medicine no disease is really the same as someone else’s disease  They all have their nuances of differences   And this is true of IC

No IC bladder pain syndrome is the same from one individual to another  Some have more anxiety and frequency while others have more burning and spasm  Some have other skin and eye conditions associated with their IC  Some are fortunate enough to have a few nonbacterial  “UTIs” and then things seem to rectify themselves and they never have symptoms again

Others are debilitated with symptoms and cannot function  So what’s the definition of chronic IC

The Stratification of IC

The reason that it’s difficult to assess the true prevalence of IC in a given population is that symptoms of the condition can vary widely  Some may have very localized symptoms to the bladder/pelvis and may dissipate over time for one reason or another

Some may struggle with symptoms and then with modifications to diet or using suggested remedies by friends or physicians the symptoms again gradually dissipate over time

These populations of patients are not counted typically in the IC longitudinal surveys  And then there are the men and children affected by the same voiding and pelvic dysfunction that has not as yet been labeled as IC   So you can see that the prevalence of IC may far be underestimated

But then who’s left?  Typically in studies the people with chronic symptoms congregate to form study populations  So what’s chronic IC?

Definition of Chronic IC

Admittedly due to the lateness of detection typically patients have progressed far enough along in their symptom complex that chronicity is part of the picture   Importantly the earlier a clinician can intervene with nutritional information and lifestyle the more likely that the IC will not go onto chronic debilitating disease

Chronic Debilitating IC Definition:  Bladder and/or pelvic pain for greater than 3 years that is constant and that has persisted and increased in intensity and has urologically and gynecologically been shown to have no obvious cause(eg tumor,cancer, bladder stone, ureteral disease)

Now this time frame is arguable but you get the picture that there has to be enough time to establish a pattern of chronicity  This of course is almost always(unless there is relentless pain) punctuated with acute flares

The Value of a Definition

It’s always nice to know where you are on the spectrum of any disease  But even more valuable is to give you an appreciation of what to expect in getting better

Getting better?  Wait, this disease is treatable but not curable   Currently what “treatable” means is that another groping bandaid is applied to try to manage the symptoms   Having trouble?  Try a shortstay in the outpatient surgical unit for a bladder fulguration  Or perhaps low dose Valium

So if one’s open to getting better with IC then you should want to know what to expect

Real Healing Takes Time   The No Bandaid Approach

As you know disease is not created overnight  The imbalance that creates the disease in the body takes time  But slowly but surely the symptoms become full blown and relief is required  So here are 5 things that you should understand and be willing to do if you want to manage your IC effectively

1  Patience and being in it for the long haul    So if you really get this then you realize that it will take time to reverse the imbalance that created the disease in the first place   What’s the time frame?  For every year of imbalance it will take 2 months for the disease course to reverse itself   For example, if you’ve been having problems with symptoms since 1999 then that’s at least 14 years of imbalance exposure which would mean 28 months or +2 years of work  Interestingly most people with IC are an impatient bunch  “I don’t have time to wait for healing to occur  I’ve got things to do, places to go, and people to see”   If you know that about yourself then you have the chance for being more patient about results There is no magic pill with this disease!

2 Choose a healing discipline that can deliver  Obviously the matter science approach with it bandaid approach isn’t working(interstim, bladder distentions, pharmaceuticals)  The energy science approach can affect change but it takes time   Of clinical significance is the now recognized association of fibromyalgia and chronic fatigue syndrome with chronic IC(1)  As IC progresses in its chronic state it’s apparent that patients get sicker  It is at this stage of the disease that the matter science approach to healing comes to a complete standstill in terms of options  It is at this point that the  energy science model of healing can take over due to its understanding of the origin of disease

3 Realize that with chronic disease there is universally a bowel component to the problem  The matter science approach is to micromanage the bladder symptoms when the origin of the disease is at the gut level  Strange as it may sound, IC management requires that the clinician become a bowel health doctor  Otherwise there will be no success  IBS is estimated to be present in the IC population as high as 80%(2) (personally I believe it’s probably 100%..it’s just that the 20% don’t have symptoms severe enough for them to be diagnosed as IBS)  Acid indigestion(GERD) is estimated to be in the range of at least 50%( but again probably higher)  Prelief anyone?

4 Understand a multifaceted approach to disease  There are many causes that brought about the symptom complex of IC  So realize that it will take many different avenues of treatment  So it’s not just one drug(elmiron) or one procedure(interstim) but a multiplicity of interventions from a therapeutic standpoint to bring about change in symptoms

5 Toxicity  Realize that part of the process of healing is detoxification that comes along with the balancing process that occurs with the clearance of symptoms  As a matter of fact the reason that the qualities that produce IC cannot be eliminated from the pelvis is that the toxic load in the pelvis holds them there  So detoxification is mandatory if you are to get relief  But what is detoxification in the mainstream press is not anything close to what real detox is

(1)J Urol. 2010 Oct;184(4):1358-63. doi: 10.1016/j.juro.2010.06.005. Epub 2010 Aug 17

All the best in healing         To Health as a Skill      Dr Bill