September 8, 2012

• Interstitial cystitis

  Not sure how many of you know that i deal with this disease and the pain that comes with it.

   

  Interstitial cystitis is a long-term (chronic) inflammation of the bladder wall.

  Causes, incidence, and risk factors

  Interstitial cystitis (IC) is a painful condition due to inflammation of the tissues of the bladder wall. The cause is unknown.

  IC is often misdiagnosed as a urinary tract infection. {thats what i thought the first few times i had the pain,it felt like an infection. But all test came back negative}Patients can go years without a correct diagnosis. On average, there is about a 4-year delay between the time the first symptoms occur and the diagnosis is made. {i was only a few months, but 3 different doctors before i got the right one who knew what she was doing}

  I feel confident in saying that my Dr is knowledgeable and is always there to help her patients.  Scary thing is since moving here we dont have a dr yet, i need a doctor and i am hoping my dr can refer someone up here

   

  Symptoms

  Common symptoms of interstitial cystitis include:

  • Pain during intercourse

  • Pelvic pain

  • Urinary discomfort

  • Urinary frequency (up to 60 times a day in severe cases)

  • Urinary urgency

  Many people who have long-term interstitial cystitis are also depressed because of the pain and changes to their lifestyle.   

  Signs and tests

  The diagnosis is made by ruling out other causes. Tests include:

  • Bladder biopsy

  • Cystoscopy (telescopic examination of the bladder)

  • Urinalysis

  • Urine culture

  • Urine cytology

  • Video urodynamics (shows how much urine must be in the bladder before you feel the need to urinate)

  Treatment

  There is no cure for IC, and there are no standard treatments that are known to be effective for most patients. Results vary from person to person. Treatment is based on trial and error until you find relief.

  Elmiron is the only medication taken by mouth that is approved for treating IC. This medicine coats the bladder like Pepto-Bismol coats the stomach.

   

  Other therapies that may be tried include:

  • Over-filling the bladder with fluid while under general anesthesia (bladder hydrodistention) Done

  • Bladder training (using relaxation techniques to train the bladder to go only at specific times) Done

  • Medicines placed directly into the bladder, including dimethyl sulfoxide (DMS), heparin, Clorpactin, lidocaine, doxorubicin, or bacillus Calmette-Guerin (BCG) vaccine Done and Very painful

  • Physical therapy and biofeedback (may help relieve pelvic floor muscle spasms) tried, didnt help

  • Surgery, ranging from cystoscopic manipulation to bladder removal (cystectomy) next to do

  Dietary changes

  Some patients find that changes in their diet can help control symptoms. The idea is to avoid foods and beverages that can cause bladder irritation.

  Below are some of the foods that the Interstitial Cystitis Association says may cause bladder irritation.- this is the hard part because of all the triggers, I keep telling Andrew i am living on toast.

  • Aged cheeses

  • Caffeine- big trigger

  • Artificial sweeteners

  • Chocolate

  • Citrus juices

  • Coffee

  • Cranberry juice (Note: Although cranberry juice is often recommended for urinary tract infections, it can make IC symptoms worse.)

  • Fava and lima beans

  • Meats that are cured, processed, smoked, canned, aged, or that contain nitrites

  • Most fruits except blueberries, honeydew melon, and pears

  • Nuts except almonds, cashews, and pine nuts

  • Onions

  • Rye bread

  • Seasonings that contain MSG

  • Sour cream- big trigger

  • Sourdough bread

  • Soy

  • Tea

  • Tofu

  • Tomatoes- Big Trigger

  • Yogurt

  Experts suggest that you do not stop eating all of these foods at one time. Instead, try eliminating one at a time to see if that helps relieve your symptoms.

   

   

  I also found

  Cholrine is a big trigger for me- if i swim im in pain for several days

  Stress- off course i am not stressed, never :p

   

  When i have a flare up- i cannot get comfortable so i cant sleep, eat or do anything but cry in pain at times.

   

  Right now i take 12 pills per day in hopes of hiding the pain, sad thing is my body will get adjested to these pills and we will be back to square one. I hope you never have to experience this pain

   

  Do i question why i have this, off course i have, but God knows best!

   

  For more Info here are some links

   

  http://kidney.niddk.nih.gov/kudiseases/pubs/interstitialcystitis/

  http://www.ic-network.com/

   

  • 11:45 pm
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