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EC treatment, need support

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  • EC treatment, need support

    Hi, I am relatively new to the message boards but not to EC. I have had this disease for over 29 years. While many of my symptoms are similar to those with IC many are different. I do not suffer from a contracted bladder or loss of bladder capacity, I rarely have frequency (except at night) or urgency, diet does not affect my symptoms. I do suffer from pain, burning, pressure, spasms, low back pain, nocturia, and severe bleeding caused by Hunner's Ulcers. A direct result of this bleeding is severe anemia. My primary swears I have only "one little red blood cell left in my body and it is on crutches." My hemoglobin (red blood cell that carries oxygen) is currently at 4.0 g/dl. It should range between 12 and 18 g/dl. I have about 1/3 the red blood cells as a normal person.

    I have been treated with DMSO, Chlorpactin, Prednisone, Imuran, Elmiron, Impramine, Vistaril, Fer-in-sol liquid, IV Imferon, vitamin c, folic acid, Amicar, antihistamines, antibiotics, Toprol, Cardizem, the "pill", Zoladex, nsaids, narcotic pain relievers, multiple fulgurations of the ulcers, and a partial cystectomy. I have had multiple transfusions in the past but we are currently trying to stay away from them due to the risk of HIV, hepatitis C and allergic reaction. I have also been treated with IV Imferon, but unfortunately I am severly allergic to it.

    I have seen 12 urologists, a few hematologists, an immunologist, a rheumatologist, an oncologist, and four internists. I have been to the Cleveland Clinic, NYU Cornell Medical Center, and Montifiore Medical Center (in NY) just to mention a few. My bladder biopsies have even been sent to the Armed Forces Institute of Pathology in Bethesda. All the pathologists agree with the diagnosis of eosinophilic granulomatous cystitis, an auto-immune disease distinct from interstitial cystitis.

    I have seen my bladder via cystoscopy (I have had over 120 cystos). It is red, raw, and awful looking. There are areas of leukoplakia, hemmorrhage, and ulceration -- and I wonder why I have pain! I cannot be treated with marcaine or heparin installations into the bladder because absorption of these drugs, though the ulcerations, into my bloodstream could possibly cause death.

    I was wondering if anyone else has suffered from these symptoms and what you have done for them. I am currently working full time as a school nurse but this is becoming quite a challenge due to my symptoms. I have constant pain, burning, spasms, and bleeding. The bleeding is so profuse that it causes clot retention requiring bladder irrigation--I am a pro at this. I also run an increased risk of pyelonephritis due to vesico-uretero reflux. Severe flank pain and a fever of 105.8 is always fun eek I am also contstantly exhausted from the anemia and lack of sleep. My uro and primary are great. They are always seeking ways to help me, unfortunately they have hit a dead end.

  • #2
    Hi there,

    I don't know much about E.C. but there are two gals that I know of who have it around there, and they're names are Cricket and Jen_Cole. You might ask them what they are experiencing. I hope you find answers soon. I wish you lots of luck on finding something to make you comfortable.

    Hugs and love,
    Jess grouphug kissing
    Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!


    • #3
      Sorry about not completing the post, my computer just sent it. lmao

      I am sorry the post was so long and I took up so much of your time. I just figured you would need to know my whole story in order to help me. Thanks for listening, and I hope I can be of help to some of you.

      Most sincerely, Jeanne D. kissing


      • #4
        WELCOME TO THE BOARDS I am sure there is someone here with symptoms very close to yours. I am ammazed you are working. I know of 2 others with EC one is too sick to responc right now I am sure....and I haven't heard from the other for a while. I so feel for your suffering. IC has caused me extreme pain in the past so I have an idea of what you are going through..but I am sure it is just a small part.

        ((((((((hugs to you))))))))) I so hope things improve for you. Best of luck and God Bless,
        Faith, Hope, and Love,

        I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

        IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
        or find me on facebook
        Be the Miracle! & Pay it Forward!

        [email protected] please contact me...I am here to help!


        • #5
          I admire your tenacity and strength. I don't know how you do it. How are you working? I'm on disability and told I would never work again in the field I've trained and earned a Master's degree in. You are amazing and a person to look for, for some encouragement.

          I am sorry for your situation. It very much sounds terrible. I really wish there was something I knew that could help. grouphug I've never sent one of those before so you get the first one...Ha, Ha!!!! I sure wish you the best.
          I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

          Medications I CURRENTLY take:
          90 mgs Ms contin (45 mgs Am/PM)
          Percocet as needed
          Topomax 100mg day
          Ambien 10 mg bed
          desipramine 25 mgs

          If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
          Albert Einstein


          • #6
            Thank you so much for your responses. The support on these boards is outstanding.

            I don't know how I work either, except that I refuse to give into this disease. Physically I know I would be better off at home but emotionally I know I need to get out and do something meaningful. I also have 3 kids in college so earning a salary is definitely beneficial. I can go out on disabilty but I prefer not too. I have not even called in sick yet once this school year! I do have the support of my docs, so it is not like I am doing something harmful. My youngest child is also a student in the school where I work so it is nice to be there.

            Once again, thanks so much for your support. I didn't really realize I needed it until I heard from you. kissing

            The BEST to all of you. Jeanne


            • #7
              Hi Jeanne-

              I think you replied to one of my posts on the bottom-back about ec and pregnancy. I can't believe you are working full time! That's great.

              You have tried everything under the sun, as I can see from your post. I dont remember if I told you this, but what worked for me was a combination of ditropan, pyridium, bactrim, and tofranil. Unfortunately it only worked for a couple of weeks-back to square one.

              I'm not on anything right now since I am pregnant. My mom keeps pushing me to take a trip to the Mayo clinic, but I told her that money doesn't grow on trees.

              I wish I could help you-but that combo of meds was the only thing that gave me relief, albeit temporary.

              My brother had ec from the time he was three-he had an ileal conduit at the age of five. But who really wants to have that done?

              Oh-did you try the oxytrol patch? I have heard from others on here it works well for pain-I'm going to look into that after baby is born.

              Speakign of babies, gotta go put this other one down before he rips the printer cable out of the wall. Take care.

              "When you get to the end of your rope, tie a knot and hang on" -Franklin D. Roosevelt


              • #8
                Jen, thanks so much for the suggestion. I have tried the drugs you mentioned but they did not help. I currently take Detrol LA and Lortabs. The problem is that I am so sensitive to pain relievers that if I took the amount required to be truly comfortable, I would not be able to get out of bed. I would be walking into walls! I take just enough to take the edge off and be able to function.

                I did reply to your post on EC and pregnancy. While I was pregnant and lactating I was so much better. Still had symptoms but they were mild and the anemia was almost non-existant. Too bad I am too old to have more kids! Just kidding, I am old but 4 kids is enough.

                I hope your pregnancy is progressing well. I think of you often.