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A Letter From Cricket January 2, 2002
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You Are Here: ICN : ECRC : A Letter From Cricket Jill Osborne, founder of the ICN, forwarded your request for EC information to me. There is very little written about EC, but I'm glad to share with you all that I've found. What I've learned, through personal experience, and by searching the internet, public libraries, and medical libraries, is that eosinophilic cystitis (EC) is a rare bladder disorder that has symptoms similar to Interstitial Cystitis (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. Chemotherapy and radiation treatments are known causes, (and I personally suspect that it other medications may be a factor). EC is sometimes a symptom of eosinophilia, and it can also be caused by something a simple as a food allergy. What happens with EC is the blood cells (eosinophils) that normally attack allergens and foreign objects in the body begin attacking normal healthy tissue - in our case, the bladder. For this reason, when there's no known cause for EC, some doctors and pathologists think it may be an autoimmune disorder. Most times when the cause is known, the cure can be as simple as eliminating or controlling that cause, followed by a course of high, tapering doses of corticosteroids. Sometimes EC patients must have the effected area of the bladder removed (partial cystectomy). Others have been helped by DMSO treatments. Many children
have been diagnosed with EC that usually clears up on its own, others
have required treatment. There's a treatment that has helped some pediatric
patients. You can read more about it at: 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. Thankfully, in my case, the progression is extremely slow. I personally think it goes into remission from time to time. Since IUEC is so extremely rare (I've been told that there are fewer than 200 documented cases in the history of medicine), there's no active research being done to find a cause and/or cure for it, nor for the more common forms of EC. Virutally nothing is written about it in medical texts, except to state, basically, that EC exsists. The one thing that IS known about EC, is that it's easily identified and diagnosed with biopsy. If EC is present, the deeper muscle tissue will be loaded with eosinophils. 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 are done to slow the progression, and cauterizing controls the bleeding. 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. Until a year ago, I had bladder washings and urine cytology three times a year, a CT-scan twice a year, and biopsy done once a year. This was to check for cancer. I discontinued having those checks done so often for financial reasons, and now get checked only once a year. The urologist that diagnosed me with EC worked with me for 3 years, trying medications and proceedures used for treating different bladder disorders, ranging from UTI to cancer, in hopes of finding something that would help rid me of EC. Under his care, I was 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 entire 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!!) My doctor also brought up my case at every seminar he attended, and we tried everything that was suggested. I'm seeing now who checks for new EC info, but in the past couple of years hasn't found anything else for me to try. I refuse to have my bladder removed. In my search, I've found 3 others who had severe EC. Each of them had their bladders removed hoping that would be their cure. Two of them died within 7 years of their surgery when eosinophils 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, eosinophils had destroyed the new bladder and attacked her colon as well as her kidneys. I've not heard from her in over 2 years. All three also had eosinophillia. Even though I don't have that, I will NEVER have a total cystectomy! For the time being, I'm seeing an excellent pain specialist who helps me control the pain with nerve blocks (lumbar epidural and superior hypogastric plexus), and medication (Elavil, Neurontin and Morphine) when needed. My urologist does what he can, to control the bleeding when necessary. Those are my only options today, but I will always have hope for tomorrow. Several years ago the Interstitial Cystitis Network (ICN) - a 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 Osborne (the ICN founder). She posted a webpage (EC Resource) listing the links to the information that was found: http://www.ic-network.com/ec/ The ICN is a wonderful haven of compassion, understanding and support. There is a wealth of information about bladder disorders and treatments. Although the ICN is basically geared toward interstitial cystitis patients, all who suffer bladder disorders, as well as family members and friends, are welcome to post messages, join in live chats, and gather information. I hope you will visit the ICN often. The National Library of Medicine (PubMed) is where nearly all of the available EC information can be found. Unfortunately, only abstracts are listed, but full text copies can be ordered for a fee. In the search box, type: eosinophilic cystitis. I wish there was more information available, but when I hear of anything new concerning EC, I'll pass it along to you. You and your husband are in my prayers. Each day brings new hope. Cricket
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