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Looking for some support and answers

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  • Looking for some support and answers


    I was diagnosed with IC five years ago. I was told it was a mild case and away I went. Every year or so I would have a bladder stretching surgery and be fine for another year. I rarely had to watch what I ate and not much else bothered me. However at Christmas things took a turn for the worse. I started having flare up after flare up and nothing worked. I was put on meds and pain pills to help me cope till I had another surgery. Usually the surgeries worked but not this time. I keep have attacks, even with the meds and with my diet, it seems like everything I eat causes a flare. Riding in cars is painful and wearing jeans for too long causes pain. I have so many questions and feel like I am just being diagnosed with IC and seeing how badly it can get. I am having a very hard time and feel it is taking over my life. If anyone can answer my questions or give me some flare up help it would be greatly appreciated!

    Question # 1- I am having a hard time figuring out my food flare ups. It seems like everything bothers me. What diet plans have worked? What helps curb flare ups before they get to bad?

    Question # 2- I am not sure if this happens to anyone else but I have been having a hard time with constant constipation. Does anyone else have this problem and do you find it causes more flare-ups? Is it a normal thing that goes along with IC?

    Question # 3- What kind of physical therapy are people doing? Is acupuncture working? Massages? I am desperate for some relief!

    Question # 4- I have been given a prescription for Elmiron, I was having bladder instillation but was having flare ups the next day so had to stop. Does anyone find Elmiron to be helpful? Is Tylenol 3 a good pain med to use or not?

    Currently I am on Elavil Tylenol 3, ENO, aloe vera drink, reactine

    I have IC, Milk allergy, medication allergies, asthma and Von Willebrand’s disease and a B12 deficiency.

    Would love some help!! Thanks everyone!

  • #2
    Hello Island Girl,

    I am sorry you are having so many problems right now. It seems a lot of people either start their IC or have more problems around December each year. My personal thought is that we are all running so much and have extra stress at the holidays and that can cause us to flare.

    Question #1 Sometimes when you are having a really bad flare it is very hard to determine what is bothering you, it seems as if everything is bad. The best diet plan that most find helpful is found under the Patient section of this website, I have a link to it in my signature. It is usually best to stick to the first column until things calm down. Also be sure you are drinking plenty of water to help dilute your urine.

    Question #2 A lot of us do have problems with constipation and it is a common side effect of pain medication. It can also cause more problems with your bladder. I use miralax with a lot of success. Some other's people find success with are colace and magnesium supplements.

    Question #3 The most used physical therapy is done by a professional that is familiar with pelvic floor dysfunction, you will most likely need a referral from your Dr. Be sure that the therapist doesn't ask you to do kegals, they are not good for us at all. Our muscles tend to be very tight and we need help to loosen them, kegals are for strengthening and making them tight....not what we need. If you feel you can, there is a terrific self help book available on this site. It is Ending Female Pain by Isa Herrera, she is a top PT in NYC and her book is helping many of us.

    Question #4 Elmiron can be very helpful. It can take weeks to a few months to work depending on what condition your bladder is in to start with. If you have mild IC, from other responses I have seen on the forum, there is a possibility that you will see results sooner. I know that there are others that do take Tylenol 3 and have success, does it seem to be helping you? If not, you could ask for something else to try. Not all pain meds help our particular type of pain, I have found from my experiences.

    I see you are using liquid aloe vera, I don't have experience with that but have seen others say that what works best for them are the Desert Harvest Aloe Vera pills, they have some things removed that typically cause ICer's problems. That might be something to look into.

    I hope my answers help you some. If you have anymore, feel free to ask. Welcome to the ICN. I wish you better days soon!

    Link to the patient information, everything from What is IC? to Disability

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom