Interstitial Cystitis
Left: Interstitial Cystitis.
Right: Normal Bladder.
On Thursday, I was diagnosed with an auto-immune disease of the bladder. It is called Interstitial Cystitis.
The emotional support of family, friends, and other people with IC / PBS is very important in helping patients cope. Studies have found that patients who learn about the disorder and become involved in their own care do better than patients who do not. It may take up to 6 months to get good relief and response to treatment.
Interstitial cystitis
Interstitial cystitis (IC) is pelvic pain, pressure, or discomfort related to the bladder typically associated with urinary frequency and urgency, in the absence of infection or other pathology. IC is also called chronic pelvic pain syndrome (CPPS), painful bladder syndrome (PBS), and bladder pain syndrome (BPS).
IC can affect women, men, and children of any age, race, or sex. It is most commonly found in women. Three to 8 million women in the United States may have IC. That is about 3 to 6 percent of all US women.(IC) is a chronic inflammatory condition of the bladder that causes frequent, urgent, and painful urination with or without pelvic discomfort. The natural lining of the bladder (epithelium) is protected from toxins in the urine by a coating of enzymes (mucopolysaccharides) called the GAG (glycoaminoglycan) layer.
In IC, this protective layer is defective, allowing toxins to penetrate into the "interstitial layers" of the bladder wall, depolarize the nerve endings located there, and cause severe irritative voiding symptoms and bladder pain.
Here is a link that has helped me learn about this disease. There are also many other links and YouTube presentations that are helpful if you want to learn more.
Interstitial cystitis (IC) is pelvic pain, pressure, or discomfort related to the bladder typically associated with urinary frequency and urgency, in the absence of infection or other pathology. IC is also called chronic pelvic pain syndrome (CPPS), painful bladder syndrome (PBS), and bladder pain syndrome (BPS).
IC can affect women, men, and children of any age, race, or sex. It is most commonly found in women. Three to 8 million women in the United States may have IC. That is about 3 to 6 percent of all US women.(IC) is a chronic inflammatory condition of the bladder that causes frequent, urgent, and painful urination with or without pelvic discomfort. The natural lining of the bladder (epithelium) is protected from toxins in the urine by a coating of enzymes (mucopolysaccharides) called the GAG (glycoaminoglycan) layer.
In IC, this protective layer is defective, allowing toxins to penetrate into the "interstitial layers" of the bladder wall, depolarize the nerve endings located there, and cause severe irritative voiding symptoms and bladder pain.
Here is a link that has helped me learn about this disease. There are also many other links and YouTube presentations that are helpful if you want to learn more.
For the next few weeks I will be seeing my urologist for weekly treatments as described below.
Bladder Instillation
http://kidney.niddk.nih.gov/kudiseases/pubs/interstitialcystitis/
During a bladder instillation, also called a bladder wash or bath, the bladder is filled with a solution that is held for varying periods of time, averaging 10 to 15 minutes, before being emptied.
http://kidney.niddk.nih.gov/kudiseases/pubs/interstitialcystitis/
During a bladder instillation, also called a bladder wash or bath, the bladder is filled with a solution that is held for varying periods of time, averaging 10 to 15 minutes, before being emptied.
The only drug approved by the U.S. Food and Drug Administration (FDA) for bladder instillation is dimethyl sulfoxide (DMSO, brand name Rimso-50). DMSO treatment involves guiding a narrow tube called a catheter up the urethra into the bladder. A measured amount of DMSO is passed through the catheter into the bladder, where it is retained for about 15 minutes before being expelled. Treatments are given every week or two for 6 to 8 weeks and repeated as needed. Most people who respond to DMSO notice improvement 3 or 4 weeks after the first 6- to 8-week cycle of treatments.
Doctors think DMSO works in several ways. Because it passes into the bladder wall, it may reach tissue more effectively to reduce inflammation and block pain. It may also prevent muscle contractions that cause pain, frequency, and urgency.
A bothersome but relatively insignificant side effect of DMSO treatments is a garlic-like taste and odor on the breath and skin that may last up to 7 hours after treatment. Long-term treatment has caused cataracts in animal studies, but this side effect has not appeared in humans.
A bothersome but relatively insignificant side effect of DMSO treatments is a garlic-like taste and odor on the breath and skin that may last up to 7 hours after treatment. Long-term treatment has caused cataracts in animal studies, but this side effect has not appeared in humans.
Blood tests, including a complete blood count and kidney and liver function tests, should be done about every 6 months.
FAQ
Will I always have IC?
The short answer is yes to whether you will always have IC. As far as the limited research has discovered there is probably a predisposition to the bladder lining being compromised. But the specific answer is that it is the symptoms of IC that effect your life. The symptoms of urgency, frequency, and pain in varying degrees take charge. That is why working on the healing of the bladder lining and calming down the symptoms is the work that must be done.
Why does it take so long for the symptoms to go away?
The short answer is that the time needed for IC symptoms to be brought under control appears to depend on the length of time that you have had your symptoms. Initially, the symptoms may appear to have attacked without warning. As you learn more about IC, the trail of when your symptoms began can range from bed wetting as a child, or that you always understood that you had to void more often than any of you friends. Another clue is that you had bladder and/or prostate infections that were so frequent that you kept antibiotic available. Others have shared that they accepted that sexual intercourse was the pattern that led to pain. This short list all can signal years of movement to a point that you could no longer accommodate the IC symptoms. With that in mind you have to realize that it will take time to see positive results.
Do IC symptoms ever go away?
The short answer is that the symptoms of IC fade away as life style, dietary changes, medication and you take control over your IC. You will also learn your own personal signals to IC symptoms. Signals can be as indirect as a twinge of low back pain, or knowing that there was a dietary misstep when that chocolate sundae was a temptation not resisted. We find there comes a time when we all do a test, we feel that we are symptom free and no longer have IC; The doctors were wrong in their diagnosis. We skip the medication, return to old habits, and guess what, the symptoms come back to remind us that the need to stay on the path to taking control is a rule we had better not break.
Should I care about my diet?
The short answer is yes, absolutely, and how could you think otherwise? Remember the old saying " We are what we eat"? This seem to be incredibly true for IC patients. There was a time ( not that long ago) that a trip to the fast food restaurant was a monthly treat and not the center of our dietary intake. There was a time when long shelf life and attractive colors were not the main focus of the food industry. The amount and number of food additives and artificial colors in our food is over-whelming. There was a time when a 8oz cup of carbonated beverage did not have to come with a "as many refill as you can consume" policy. Obesity is the media focus, but the question is ... what is going through your body as you wolf down your hamburger, snack on your frozen pizza, and gulp down your sugar substitute diet drink? Your urinary tract knows and will share its' great misery with you.
Can I exercise with IC?
The short answer is yes, with the understanding that lifting, squatting, bending, and pulling, or putting pressure on your pelvic area is not a good idea for the IC bladder. Even the newly re-discovered Kegel exercises can make the nerve endings in the IC pelvic area feel that they are being assaulted. Stretching is the best, and a recumbent bike also takes the pressure off the pelvic girdle. Upper body and pressure free from the waist down exercises seem to bring benefits without causing or adding pain.
The short answer is yes to whether you will always have IC. As far as the limited research has discovered there is probably a predisposition to the bladder lining being compromised. But the specific answer is that it is the symptoms of IC that effect your life. The symptoms of urgency, frequency, and pain in varying degrees take charge. That is why working on the healing of the bladder lining and calming down the symptoms is the work that must be done.
Why does it take so long for the symptoms to go away?
The short answer is that the time needed for IC symptoms to be brought under control appears to depend on the length of time that you have had your symptoms. Initially, the symptoms may appear to have attacked without warning. As you learn more about IC, the trail of when your symptoms began can range from bed wetting as a child, or that you always understood that you had to void more often than any of you friends. Another clue is that you had bladder and/or prostate infections that were so frequent that you kept antibiotic available. Others have shared that they accepted that sexual intercourse was the pattern that led to pain. This short list all can signal years of movement to a point that you could no longer accommodate the IC symptoms. With that in mind you have to realize that it will take time to see positive results.
Do IC symptoms ever go away?
The short answer is that the symptoms of IC fade away as life style, dietary changes, medication and you take control over your IC. You will also learn your own personal signals to IC symptoms. Signals can be as indirect as a twinge of low back pain, or knowing that there was a dietary misstep when that chocolate sundae was a temptation not resisted. We find there comes a time when we all do a test, we feel that we are symptom free and no longer have IC; The doctors were wrong in their diagnosis. We skip the medication, return to old habits, and guess what, the symptoms come back to remind us that the need to stay on the path to taking control is a rule we had better not break.
Should I care about my diet?
The short answer is yes, absolutely, and how could you think otherwise? Remember the old saying " We are what we eat"? This seem to be incredibly true for IC patients. There was a time ( not that long ago) that a trip to the fast food restaurant was a monthly treat and not the center of our dietary intake. There was a time when long shelf life and attractive colors were not the main focus of the food industry. The amount and number of food additives and artificial colors in our food is over-whelming. There was a time when a 8oz cup of carbonated beverage did not have to come with a "as many refill as you can consume" policy. Obesity is the media focus, but the question is ... what is going through your body as you wolf down your hamburger, snack on your frozen pizza, and gulp down your sugar substitute diet drink? Your urinary tract knows and will share its' great misery with you.
Can I exercise with IC?
The short answer is yes, with the understanding that lifting, squatting, bending, and pulling, or putting pressure on your pelvic area is not a good idea for the IC bladder. Even the newly re-discovered Kegel exercises can make the nerve endings in the IC pelvic area feel that they are being assaulted. Stretching is the best, and a recumbent bike also takes the pressure off the pelvic girdle. Upper body and pressure free from the waist down exercises seem to bring benefits without causing or adding pain.
