Tweet
(Cricket) Eosinophilic Cystitis
Eosinophilic = EE oh SIN oh FILLick (emphasize the capitalized sounds)
To "have it worse" or to "have it better" are personal descriptions: "I'M better than I was (or will be)".... "I'M worse than I was (or will be)". But I cannot, in all honesty say that I'm better off or worse off than anyone else. The size of the burden (lighter/heavier, better/worse) isn't what matters. What counts most is that we continually seek ways to carry the load. Living with chronic illness helps us to understand how very important it is for us to help one another.
Instead of writing individually to those curious about EC, I'm posting this information as a general topic. Hopefully, this will answer many of your questions. I will be more than glad to try to answer any questions you may still have.
Eosinophilic cystitis (EC) is a rare bladder disorder that has symptoms similar to IC (frequency, urgency, pain, spasms and bleeding). The pain from EC is constant and unrelenting, very difficult to control. The bleeding can be profuse at times.
In most cases, the cause of EC is known. It can be the result of chemo and/or radiation treatments, or it can be a symptom of eosinophilia. It can also be caused by something a simple as a food allergy. There's also a form that children get that usually clears up on its own. When the cause is known, the cure can be as simple as eliminating that cause, followed by a course of high, tapering doses of steroids. Sometimes EC patients must have the effected area of the bladder removed (partial cystectomy). Others have been helped by DMSO treatments.
I was diagnosed in 1993 with the rarest form of EC -- idiopathic ulcerative eosinophilic cystitis (IUEC). Just the name itself is overwhelming. And it took me a long time to learn how to say it, let alone spell it! LOL This form of EC has no known cause, there are no treatments available and there is no cure. Since IUEC is so extremely rare (fewer than 200 documented cases in the history of medicine), there's no active research being done to find a cause and/or cure. Virutally nothing is written about it in medical texts, except to state that IUEC exsists.
The one thing that IS known about EC, is that it's easily identified and diagnosed with biopsy. If EC is present, the sample tissue will be loaded with eosinophils (blood cells that normally attack, and rid the body of, allergens and foreign objects). With EC, these blood cells attack the bladder. Ulcers in the bladder develop very slowly. There may be periods when the ulcers stop enlarging, but they never heal. Because of these ulcers, bleeding is a major symptom of EC, and the threat of perforation is always a concern. Resections (surgically removing the ulcers) and/or cauterizing are done to control the bleeding. [The ulcers found in EC patients are not like Hunner's ulcers that some IC patients have. Hunner's ulcers, while equally as painful, do heal over and scar.]
The doctors I've been to all think that, because of the unhealing ulcers,EC might become cancerous, or it might spontaneously spread to other organs, but so little is actually known because so few people have this disorder. I'm supposed to go for cancer screening several times a year, and have either a CAT scan or an ultrasound at least once a year.
Hoping to find a cause for my EC I've been tested for just about every allergy known to man, tried just about all of the treatments available for IC, had 1/4 of my bladder removed, and had the top layer of the inside of my bladder removed by laser (that was experimental, took months to recover from, I almost lost my bladder, and I do NOT recommend it as a treatment for ANYTHING!!) I've talked to urologists across the US and corresponded with doctors in several other countries. And for a year, I was the EC guinne pig for hospitals in DC, Virginia and Tennessee. I was more or less nothing more than a curiosity and nothing of any consequence was ever done with all the test results and tissue samples.
The urologist I'm seeing now checks for new EC info, but in the past couple of years hasn't found anything else for me to try. He hasn't given up hope of something being discovered that will help. I refuse to have my bladder removed. In my research, I've found 3 others who had IUEC. Each of them had their bladders removed hoping that would be their cure. Two of them died within 7 years of their surgery from when EC attacked and destroyed their kidneys. The third lady had an artificial bladder formed from part of her colon and the last I heard from her, EC had destroyed the new bladder and attacked her colon as well as her kidneys. I've not heard from her in over 2 years. So you can understand why I will NEVER have a total cystectomy!
For the time being, I'm seeing a pain specialist who helps me control the pain with medication (Elavil, Neurontin and Morphine) and nerve blocks (lumbar epidural and superior hypogastric). My urologist does what he can to control the bleeding. Those are my only options today, but I will always have hope for tomorrow.
For more information, the ICN has an EC webpage http://www.ic-network.com/ec/
This beautiful Family of Friends searched every nook and cranny of the internet, found every bit of information available related to EC, and sent it all to Jill and Diane. Every one of them are angels of love. I'm truly blessed.
With Love,
Cricket
To "have it worse" or to "have it better" are personal descriptions: "I'M better than I was (or will be)".... "I'M worse than I was (or will be)". But I cannot, in all honesty say that I'm better off or worse off than anyone else. The size of the burden (lighter/heavier, better/worse) isn't what matters. What counts most is that we continually seek ways to carry the load. Living with chronic illness helps us to understand how very important it is for us to help one another.
Instead of writing individually to those curious about EC, I'm posting this information as a general topic. Hopefully, this will answer many of your questions. I will be more than glad to try to answer any questions you may still have.
Eosinophilic cystitis (EC) is a rare bladder disorder that has symptoms similar to IC (frequency, urgency, pain, spasms and bleeding). The pain from EC is constant and unrelenting, very difficult to control. The bleeding can be profuse at times.
In most cases, the cause of EC is known. It can be the result of chemo and/or radiation treatments, or it can be a symptom of eosinophilia. It can also be caused by something a simple as a food allergy. There's also a form that children get that usually clears up on its own. When the cause is known, the cure can be as simple as eliminating that cause, followed by a course of high, tapering doses of steroids. Sometimes EC patients must have the effected area of the bladder removed (partial cystectomy). Others have been helped by DMSO treatments.
I was diagnosed in 1993 with the rarest form of EC -- idiopathic ulcerative eosinophilic cystitis (IUEC). Just the name itself is overwhelming. And it took me a long time to learn how to say it, let alone spell it! LOL This form of EC has no known cause, there are no treatments available and there is no cure. Since IUEC is so extremely rare (fewer than 200 documented cases in the history of medicine), there's no active research being done to find a cause and/or cure. Virutally nothing is written about it in medical texts, except to state that IUEC exsists.
The one thing that IS known about EC, is that it's easily identified and diagnosed with biopsy. If EC is present, the sample tissue will be loaded with eosinophils (blood cells that normally attack, and rid the body of, allergens and foreign objects). With EC, these blood cells attack the bladder. Ulcers in the bladder develop very slowly. There may be periods when the ulcers stop enlarging, but they never heal. Because of these ulcers, bleeding is a major symptom of EC, and the threat of perforation is always a concern. Resections (surgically removing the ulcers) and/or cauterizing are done to control the bleeding. [The ulcers found in EC patients are not like Hunner's ulcers that some IC patients have. Hunner's ulcers, while equally as painful, do heal over and scar.]
The doctors I've been to all think that, because of the unhealing ulcers,EC might become cancerous, or it might spontaneously spread to other organs, but so little is actually known because so few people have this disorder. I'm supposed to go for cancer screening several times a year, and have either a CAT scan or an ultrasound at least once a year.
Hoping to find a cause for my EC I've been tested for just about every allergy known to man, tried just about all of the treatments available for IC, had 1/4 of my bladder removed, and had the top layer of the inside of my bladder removed by laser (that was experimental, took months to recover from, I almost lost my bladder, and I do NOT recommend it as a treatment for ANYTHING!!) I've talked to urologists across the US and corresponded with doctors in several other countries. And for a year, I was the EC guinne pig for hospitals in DC, Virginia and Tennessee. I was more or less nothing more than a curiosity and nothing of any consequence was ever done with all the test results and tissue samples.
The urologist I'm seeing now checks for new EC info, but in the past couple of years hasn't found anything else for me to try. He hasn't given up hope of something being discovered that will help. I refuse to have my bladder removed. In my research, I've found 3 others who had IUEC. Each of them had their bladders removed hoping that would be their cure. Two of them died within 7 years of their surgery from when EC attacked and destroyed their kidneys. The third lady had an artificial bladder formed from part of her colon and the last I heard from her, EC had destroyed the new bladder and attacked her colon as well as her kidneys. I've not heard from her in over 2 years. So you can understand why I will NEVER have a total cystectomy!
For the time being, I'm seeing a pain specialist who helps me control the pain with medication (Elavil, Neurontin and Morphine) and nerve blocks (lumbar epidural and superior hypogastric). My urologist does what he can to control the bleeding. Those are my only options today, but I will always have hope for tomorrow.
For more information, the ICN has an EC webpage http://www.ic-network.com/ec/
This beautiful Family of Friends searched every nook and cranny of the internet, found every bit of information available related to EC, and sent it all to Jill and Diane. Every one of them are angels of love. I'm truly blessed.
With Love,
Cricket
but at the same time I'm very sorry that you have to have it 
Comment