Just diagnosed with IC,

Discussion in 'Fibromyalgia Main Forum' started by Sandyz, Feb 2, 2006.

  1. Sandyz

    Sandyz New Member

    I just got diagnosed with IC after 3 monthes of misery. I had been having pelvic pain and frequency for at least a year but it really got severe the last few monthes.

    I have to have a scope down and a bladder distention on the 22nd of this month. I am already getting some relief from elinating caffeine and diet sodas. Have any of you found that Prolief, I`ve looked in every drug store around here and can`t find it.

    Another question I have is: is fatigue a symptom of Ic? My fatigue had been much better until this junk popped up in my life. So, I`m wandering if the IC did it? Also, did you gain weight with it? I was looking at an IC support board and a lot of them were saying they gained weight with it. I sure have Ic belly.

    Any insite you can give me will be appreciated. Now I can add another thing to my already too long list of ailments. What`s next!!!

    [This Message was Edited on 02/02/2006]
    [This Message was Edited on 02/02/2006]
  2. PVLady

    PVLady New Member

    I found the following information on IC:


    Interstitial Cystitis / Painful Bladder Syndrome
    On this page:

    What is IC / PBS?
    What causes IC?
    How is IC / PBS diagnosed?
    What are the treatments for IC / PBS?
    Are there any special concerns?
    Hope Through Research
    Suggested Reading
    For More Information
    What is IC / PBS?

    Interstitial cystitis (IC) is a condition that results in recurring discomfort or pain in the bladder and the surrounding pelvic region. The symptoms vary from case to case and even in the same individual. People may experience mild discomfort, pressure, tenderness, or intense pain in the bladder and pelvic area. Symptoms may include an urgent need to urinate (urgency), a frequent need to urinate (frequency), or a combination of these symptoms. Pain may change in intensity as the bladder fills with urine or as it empties. Women's symptoms often get worse during menstruation. They may sometimes experience pain with vaginal intercourse.

    Because IC varies so much in symptoms and severity, most researchers believe that it is not one, but several diseases. In recent years, scientists have started to use the term painful bladder syndrome (PBS) to describe cases with painful urinary symptoms that may not meet the strictest definition of IC. The term IC / PBS includes all cases of urinary pain that can't be attributed to other causes, such as infection or urinary stones. The term interstitial cystitis, or IC, is used alone when describing cases that meet all of the IC criteria established by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).

    In IC / PBS, the bladder wall may be irritated and become scarred or stiff. Glomerulations (pinpoint bleeding caused by recurrent irritation) often appear on the bladder wall. Hunner's ulcers are present in 10 percent of patients with IC. Some people with IC / PBS find that their bladders cannot hold much urine, which increases the frequency of urination. Frequency, however, is not always specifically related to bladder size; many people with severe frequency have normal bladder capacity. People with severe cases of IC / PBS may urinate as many as 60 times a day, including frequent nighttime urination (nocturia).

    IC / PBS is far more common in women than in men. Of the estimated 1 million Americans with IC, up to 90 percent are women. [Top]

    What causes IC?
    Some of the symptoms of IC / PBS resemble those of bacterial infection, but medical tests reveal no organisms in the urine of patients with IC / PBS. Furthermore, patients with IC / PBS do not respond to antibiotic therapy. Researchers are working to understand the causes of IC / PBS and to find effective treatments.

    In recent years, researchers have isolated a substance found almost exclusively in the urine of people with interstitial cystitis. They have named the substance antiproliferative factor, or APF, because it appears to block the normal growth of the cells that line the inside wall of the bladder. Researchers anticipate that learning more about APF will lead to a greater understanding of the causes of IC and to possible treatments.

    Researchers are beginning to explore the possibility that heredity may play a part in some forms of IC. In a few cases, IC has affected a mother and a daughter or two sisters, but it does not commonly run in families.

    [Top]
    How is IC / PBS diagnosed?
    Because symptoms are similar to those of other disorders of the urinary bladder and because there is no definitive test to identify IC / PBS, doctors must rule out other treatable conditions before considering a diagnosis of IC / PBS. The most common of these diseases in both genders are urinary tract infections and bladder cancer. IC / PBS is not associated with any increased risk in developing cancer. In men, common diseases include chronic prostatitis or chronic pelvic pain syndrome.

    The diagnosis of IC / PBS in the general population is based on

    presence of pain related to the bladder, usually accompanied by frequency and urgency


    absence of other diseases that could cause the symptoms
    Diagnostic tests that help in ruling out other diseases include urinalysis, urine culture, cystoscopy, biopsy of the bladder wall, distention of the bladder under anesthesia, urine cytology, and laboratory examination of prostate secretions.

    Urinalysis and Urine Culture
    Examining urine under a microscope and culturing the urine can detect and identify the primary organisms that are known to infect the urinary tract and that may cause symptoms similar to IC / PBS. A urine sample is obtained either by catheterization or by the "clean catch" method. For a clean catch, the patient washes the genital area before collecting urine "midstream" in a sterile container. White and red blood cells and bacteria in the urine may indicate an infection of the urinary tract, which can be treated with an antibiotic. If urine is sterile for weeks or months while symptoms persist, the doctor may consider a diagnosis of IC / PBS.

    Culture of Prostate Secretions
    Although not commonly done, in men, the doctor might obtain prostatic fluid and examine it for signs of a prostate infection, which can then be treated with antibiotics.

    Cystoscopy Under Anesthesia With Bladder Distention
    The doctor may perform a cystoscopic examination in order to rule out bladder cancer. During cystoscopy, the doctor uses a cystoscope—an instrument made of a hollow tube about the diameter of a drinking straw with several lenses and a light—to see inside the bladder and urethra. The doctor might also distend or stretch the bladder to its capacity by filling it with a liquid or gas. Because bladder distention is painful in patients with IC / PBS, they must be given some form of anesthesia for the procedure.

    The doctor may also test the patient's maximum bladder capacity—the maximum amount of liquid or gas the bladder can hold. This procedure must be done under anesthesia since the bladder capacity is limited by either pain or a severe urge to urinate.

    Biopsy
    A biopsy is a tissue sample that can be examined under a microscope. Samples of the bladder and urethra may be removed during a cystoscopy. A biopsy helps rule out bladder cancer.

    Future Diagnostic Tools
    Researchers are investigating and validating some promising biomarkers such as anti-proliferative factor (APF), some cytokines, and other growth factors. These might provide more reliable diagnostic markers for IC and lead to more focused treatment for the disease.


    Cytoscope
    [Top]
    What are the treatments for IC / PBS?
    Scientists have not yet found a cure for IC / PBS, nor can they predict who will respond best to which treatment. Symptoms may disappear without explanation or coincide with an event such as a change in diet or treatment. Even when symptoms disappear, they may return after days, weeks, months, or years. Scientists do not know why.

    Because the causes of IC / PBS are unknown, current treatments are aimed at relieving symptoms. Many people are helped for variable periods by one or a combination of the treatments. As researchers learn more about IC / PBS, the list of potential treatments will change, so patients should discuss their options with a doctor.

    Bladder Distention
    Many patients have noted an improvement in symptoms after a bladder distention has been done to diagnose IC / PBS. In many cases, the procedure is used as both a diagnostic test and initial therapy.

    Researchers are not sure why distention helps, but some believe that it may increase capacity and interfere with pain signals transmitted by nerves in the bladder. Symptoms may temporarily worsen 24 to 48 hours after distention, but should return to predistention levels or improve within 2 to 4 weeks.

    Bladder Instillation
    During a bladder instillation, also called a bladder wash or bath, the bladder is filled with a solution that is held for varying periods of time, averaging 10 to 15 minutes, before being emptied.

    The only drug approved by the U.S. Food and Drug Administration (FDA) for bladder instillation is dimethyl sulfoxide (DMSO, RIMSO-50). DMSO treatment involves guiding a narrow tube called a catheter up the urethra into the bladder. A measured amount of DMSO is passed through the catheter into the bladder, where it is retained for about 15 minutes before being expelled. Treatments are given every week or two for 6 to 8 weeks and repeated as needed. Most people who respond to DMSO notice improvement 3 or 4 weeks after the first 6- to 8-week cycle of treatments. Highly motivated patients who are willing to catheterize themselves may, after consultation with their doctor, be able to have DMSO treatments at home. Self-administration is less expensive and more convenient than going to the doctor's office.

    Doctors think DMSO works in several ways. Because it passes into the bladder wall, it may reach tissue more effectively to reduce inflammation and block pain. It may also prevent muscle contractions that cause pain, frequency, and urgency.

    A bothersome but relatively insignificant side effect of DMSO treatments is a garlic-like taste and odor on the breath and skin that may last up to 72 hours after treatment. Long-term treatment has caused cataracts in animal studies, but this side effect has not appeared in humans. Blood tests, including a complete blood count and kidney and liver function tests, should be done about every 6 months.

    Oral Drugs
    Pentosan polysulfate sodium (Elmiron)
    This first oral drug developed for IC was approved by the FDA in 1996. In clinical trials, the drug improved symptoms in 30 percent of patients treated. Doctors do not know exactly how it works, but one theory is that it may repair defects that might have developed in the lining of the bladder.

    The FDA-recommended oral dosage of Elmiron is 100 mg, three times a day. Patients may not feel relief from IC pain for the first 2 to 4 months. A decrease in urinary frequency may take up to 6 months. Patients are urged to continue with therapy for at least 6 months to give the drug an adequate chance to relieve symptoms.

    Elmiron's side effects are limited primarily to minor gastrointestinal discomfort. A small minority of patients experienced some hair loss, but hair grew back when they stopped taking the drug. Researchers have found no negative interactions between Elmiron and other medications.

    Elmiron may affect liver function, which should therefore be monitored by the doctor.

    Because Elmiron has not been tested in pregnant women, the manufacturer recommends that it not be used during pregnancy, except in the most severe cases.

    Other oral medications
    Aspirin and ibuprofen may be a first line of defense against mild discomfort. Doctors may recommend other drugs to relieve pain.

    Some patients have experienced improvement in their urinary symptoms by taking tricyclic antidepressants (amitriptyline) or antihistamines. Amitriptyline may help to reduce pain, increase bladder capacity, and decrease frequency and nocturia. Some patients may not be able to take it because it makes them too tired during the day. In patients with severe pain, narcotic analgesics such as acetaminophen (Tylenol) with codeine or longer acting narcotics may be necessary.

    All drugs—even those sold over the counter—have side effects. Patients should always consult a doctor before using any drug for an extended amount of time.

    Transcutaneous Electrical Nerve Stimulation
    With transcutaneous electrical nerve stimulation (TENS), mild electric pulses enter the body for minutes to hours two or more times a day either through wires placed on the lower back or just above the pubic area, between the navel and the pubic hair, or through special devices inserted into the vagina in women or into the rectum in men. Although scientists do not know exactly how TENS relieves pelvic pain, it has been suggested that the electrical pulses may increase blood flow to the bladder, strengthen pelvic muscles that help control the bladder, or trigger the release of substances that block pain.

    TENS is relatively inexpensive and allows the patient to take an active part in treatment. Within some guidelines, the patient decides when, how long, and at what intensity TENS will be used. It has been most helpful in relieving pain and decreasing frequency in patients with Hunner's ulcers. Smokers do not respond as well as nonsmokers. If TENS is going to help, improvement is usually apparent in 3 to 4 months.

    Diet
    There is no scientific evidence linking diet to IC / PBS, but many doctors and patients find that alcohol, tomatoes, spices, chocolate, caffeinated and citrus beverages, and high-acid foods may contribute to bladder irritation and inflammation. Some patients also note that their symptoms worsen after eating or drinking products containing artificial sweeteners. Patients may try eliminating various items from their diet and reintroducing them one at a time to determine which, if any, affect their symptoms. However, maintaining a varied, well balanced diet is important.

    Smoking
    Many patients feel that smoking makes their symptoms worse. How the by-products of tobacco that are excreted in the urine affect IC / PBS is unknown. Smoking, however, is the major known cause of bladder cancer. Therefore, one of the best things smokers can do for their bladder and their overall health is to quit.

    Exercise
    Many patients feel that gentle stretching exercises help relieve IC / PBS symptoms.

    Bladder Training
    People who have found adequate relief from pain may be able to reduce frequency by using bladder training techniques. Methods vary, but basically patients decide to void (empty their bladder) at designated times and use relaxation techniques and distractions to keep to the schedule. Gradually, patients try to lengthen the time between scheduled voids. A diary in which to record voiding times is usually helpful in keeping track of progress.



    Surgery
    Surgery should be considered only if all available treatments have failed and the pain is disabling. Many approaches and techniques are used, each of which has its own advantages and complications that should be discussed with a surgeon. Your doctor may recommend consulting another surgeon for a second opinion before taking this step. Most doctors are reluctant to operate because the outcome is unpredictable: Some people still have symptoms after surgery.

    People considering surgery should discuss the potential risks and benefits, side effects, and long- and short-term complications with a surgeon and with their family, as well as with people who have already had the procedure. Surgery requires anesthesia, hospitalization, and weeks or months of recovery. As the complexity of the procedure increases, so do the chances for complications and for failure.

    To locate a surgeon experienced in performing specific procedures, check with your doctor.

    Two procedures—fulguration and resection of ulcers—can be done with instruments inserted through the urethra. Fulguration involves burning Hunner's ulcers with electricity or a laser. When the area heals, the dead tissue and the ulcer fall off, leaving new, healthy tissue behind. Resection involves cutting around and removing the ulcers. Both treatments are done under anesthesia and use special instruments inserted into the bladder through a cystoscope. Laser surgery in the urinary tract should be reserved for patients with Hunner's ulcers and should be done only by doctors who have had special training and have the expertise needed to perform the procedure.

    Another surgical treatment is augmentation, which makes the bladder larger. In most of these procedures, scarred, ulcerated, and inflamed sections of the patient's bladder are removed, leaving only the base of the bladder and healthy tissue. A piece of the patient's colon (large intestine) is then removed, reshaped, and attached to what remains of the bladder. After the incisions heal, the patient may void less frequently. The effect on pain varies greatly; IC / PBS can sometimes recur on the segment of colon used to enlarge the bladder.

    Even in carefully selected patients—those with small, contracted bladders—pain, frequency, and urgency may remain or return after surgery, and patients may have additional problems with infections in the new bladder and difficulty absorbing nutrients from the shortened colon. Some patients are incontinent, while others cannot void at all and must insert a catheter into the urethra to empty the bladder.

    A surgical variation of TENS, called sacral nerve root stimulation, involves permanent implantation of electrodes and a unit emitting continuous electrical pulses. Studies of this experimental procedure are now under way.

    Bladder removal, called a cystectomy, is another, very infrequently used, surgical option. Once the bladder has been removed, different methods can be used to reroute the urine. In most cases, ureters are attached to a piece of colon that opens onto the skin of the abdomen. This procedure is called a urostomy and the opening is called a stoma. Urine empties through the stoma into a bag outside the body. Some urologists are using a second technique that also requires a stoma but allows urine to be stored in a pouch inside the abdomen. At intervals throughout the day, the patient puts a catheter into the stoma and empties the pouch. Patients with either type of urostomy must be very careful to keep the area in and around the stoma clean to prevent infection. Serious potential complications may include kidney infection and small bowel obstruction.

    A third method to reroute urine involves making a new bladder from a piece of the patient's colon and attaching it to the urethra. After healing, the patient may be able to empty the newly formed bladder by voiding at scheduled times or by inserting a catheter into the urethra. Only a few surgeons have the special training and expertise needed to perform this procedure.

    Even after total bladder removal, some patients still experience variable IC / PBS symptoms in the form of phantom pain. Therefore, the decision to undergo a cystectomy should be made only after testing all alternative methods and after seriously considering the potential outcome.

    [Top]
    Are there any special concerns?
    Cancer
    There is no evidence that IC / PBS increases the risk of bladder cancer.

    Pregnancy
    Researchers have little information about pregnancy and IC / PBS but believe that the disorder does not affect fertility or the health of the fetus. Some women find that their IC / PBS goes into remission during pregnancy, while others experience a worsening of their symptoms.

    Coping
    The emotional support of family, friends, and other people with IC / PBS is very important in helping patients cope. Studies have found that patients who learn about the disorder and become involved in their own care do better than patients who do not. See the Interstitial Cystitis Association of America's website under "Support Groups" to find a group near you.

    [Top]

    Hope Through Research
    Although answers may seem slow in coming, researchers are working to solve the painful riddle of IC / PBS. Some scientists receive funds from the Federal Government to help support their research, while others receive support from their employing institution, drug pharmaceutical or device companies, or patient support associations.

    NIDDK's investment in scientifically meritorious IC / PBS research across the country has grown considerably since 1987. The Institute now supports research that is looking at various aspects of IC / PBS, such as how the components of urine may injure the bladder and what role organisms identified by nonstandard methods may have in causing IC / PBS. In addition to funding research, NIDDK sponsors scientific workshops where investigators share the results of their studies and discuss future areas for investigation.

    Clinical Research Network
    The Interstitial Cystitis Clinical Research Network (ICCRN) is a product of two NIDDK programs: the Interstitial Cystitis Database (ICDB) Study and the Interstitial Cystitis Clinical Trials Group (ICCTG). Established in 1991, the ICDB was a five-year prospective cohort study of more than 600 men and women with symptoms of urinary urgency, frequency, and pelvic pain. The study described the longitudinal changes of urinary symptoms, the impact of IC on quality of life, treatment patterns, and the relationship between bladder biopsy findings and patient symptoms. The ICCTG was established in 1996 as a followup to the ICDB study. The clinical trials group developed two randomized, controlled clinical trials of promising therapies, one using oral therapies—pentosan polysulfate sodium (Elmiron) and hydroxyzine hydrochloride (Atarax)— and the other administering intravesical treatment using Bacillus Calmette-Guérin (BCG). BCG is a vaccine for tuberculosis that stimulates the immune system and may have an effect on the bladder. The ICCTG also developed and conducted ancillary studies of various biomarkers such as heparin-binding-growth-factor-like-growth-factor (HB-EGF) and anti-proliferative factor (APF).

    In 2003, the ICCTG became the Interstitial Cystitis Clinical Research Network (ICCRN), which is conducting additional clinical trials, either sequentially or concurrently, over a second five-year period. Ancillary studies will be developed and conducted in conjunction with the trials. One of these trials is studying the effectiveness of amitriptyline (Elavil) in treating painful bladder syndrome, which includes IC. Amitriptyline has FDA approval for the treatment of depression, but researchers believe the drug may work to block nerve signals that trigger pain in the bladder and may also decrease muscle spasms in the bladder, helping to cut both pain and frequent urination. Participants in the trial will be randomly assigned to take up to 75 milligrams of amitriptyline or a placebo each day for 14 to 26 weeks.

    [Top]
    Suggested Reading
    The materials listed below may be found in medical libraries, in many college and university libraries, through interlibrary loan in most public libraries, and at bookstores. Items are listed for information only; inclusion does not imply endorsement by NIH.

    Articles and Book Chapters
    Keay SK, Warren JW. Is interstitial cystitis an infectious disease? International Journal of Antimicrobial Agents, 2002, 19(6):480-3.

    The Interstitial Cystitis Clinical Trials Group. A randomized controlled trial of intravesical bacillus Calmette-Guerin for treatment of refractory interstitial cystitis. Journal of Urology, 2005, 173(4):1186-91.

    The Interstitial Cystitis Clinical Trials Group. A pilot clinical trial of oral pentosan polysulfate and oral hydroxyzine in patients with interstitial cystitis. Journal of Urology, 2003, 170(3):810-15.

    Books and Booklets
    Moldwin RM. Interstitial cystitis survival guide: your guide to the latest treatment options and coping strategies. Oakland, CA: New Harbinger Publications, Inc.; 2000. (Available by calling 1–800–HELP–ICA.)

    Sandler GG, Sandler A. Patient to patient: managing interstitial cystitis and overlapping conditions. New Orleans, LA: Bon Ange LLC; 2000.

    Sant G, ed. Interstitial cystitis. Philadelphia: Lippincott-Raven; 1997.

    The U.S. Government does not endorse or favor any specific commercial product or company. Trade, proprietary, or company names appearing in this document are used only because they are considered necessary in the context of the information provided. If a product is not mentioned, the omission does not mean or imply that the product is unsatisfactory.


    [Top]
    For More Information
    American Foundation for Urologic Disease
    1000 Corporate Boulevard
    Suite 410
    Linthicum, MD 21090
    Phone: 1–800–828–7866 or 410–689–3990
    Email: admin@afud.org
    Internet: www.afud.org

    American Pain Society
    4700 West Lake Avenue
    Glenview, IL 60025
    Phone: 847–375–4715
    Email: info@ampainsoc.org
    Internet: www.ampainsoc.org

    American Urogynecologic Society
    2025 M Street NW., Suite 800
    Washington, DC 20036
    Phone: 202–367–1167
    Fax: 202–367–2167
    Email: augs@dc.sba.com
    Internet: www.augs.org

    International Association for the Study of Pain
    909 Northeast 43rd Street, Suite 306
    Seattle, WA 98105–6020
    Phone: 206–547–6409
    Email: iaspdesk@juno.com
    Internet: www.iasp-pain.org

    Interstitial Cystitis Association of America
    110 North Washington Street, Suite 340
    Rockville, MD 20850
    Phone: 1–800–HELP–ICA (435–7422) or 301–610–5300
    Fax: 301–610–5308
    Email: icamail@ichelp.org
    Internet: www.ichelp.org

    National Chronic Pain Outreach Association
    7979 Old Georgetown Road, Suite 100
    Bethesda, MD 20814–2429
    Phone: 301–652–4948
    Fax: 301–907–0745

    National Kidney Foundation
    30 East 33rd Street
    New York, NY 10016
    Phone: 1–800–622–9010 or 212–889–2210
    Email: info@kidney.org
    Internet: www.kidney.org

    National Organization of Social Security Claimants' Representatives
    6 Prospect Street
    Midland Park, NJ 07432–1691
    Phone: 1–800–431–2804
    Email: webmaster@nosscr.org
    Internet: www.nosscr.org

    Social Security Administration
    Write or call your local office: look in the telephone book under U.S. Government, Department of Health and Human Services or call 1–800–772–1213, visit www.ssa.gov on the Internet, or write to Social Security Administration
    Office of Public Inquiries
    Windsor Park Building
    6401 Security Boulevard
    Baltimore, MD 21235–6401

    United Ostomy Association
    19772 MacArthur Boulevard, Suite 200
    Irvine, CA 92612
    Phone: 1–800–826–0826 or 949–660–8624
    Fax: 949–660–9262
    Email: info@uoa.org
    Internet: www.uoa.org

    [Top]
    --------------------------------------------------------------------------------

    National Kidney and Urologic Diseases Information Clearinghouse
    3 Information Way
    Bethesda, MD 20892–3580
    Email: nkudic@info.niddk.nih.gov

    The National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC) is a service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is part of the National Institutes of Health under the U.S. Department of Health and Human Services. Established in 1987, the Clearinghouse provides information about diseases of the kidneys and urologic system to people with kidney and urologic disorders and to their families, health care professionals, and the public. The NKUDIC answers inquiries, develops and distributes publications, and works closely with professional and patient organizations and Government agencies to coordinate resources about kidney and urologic diseases.

    Publications produced by the Clearinghouse are carefully reviewed by both NIDDK scientists and outside experts.

    This publication is not copyrighted. The Clearinghouse encourages users of this fact sheet to duplicate and distribute as many copies as desired.


    --------------------------------------------------------------------------------

    NIH Publication No. 05–3220
    June 2005


  3. pawprints

    pawprints New Member

    Yes, it is literally a pain. Prelief does help, but really cut out anything acid from your diet...tomatoes,fruit,etc. Also do a search on this site, as many people have written about IC. I think it must go hand in hand with these illnesses. I have also found some good information on the internet about IC and getting relief. There are some good books on the subject I ordered through Amazon. Every little bit of knowledge helps.

    It is tough to add one more thing to our list of ailments. Wishing you better days without the bladder pain.
  4. jeanann

    jeanann New Member

    to hear you have IC. I was attacked by it Dec 15 of 2000 and I will tell you today I live a mostly pain free life. The secrete I have found is drinking TONS of water like 100 ounces per day. I still see the uro and well I dont drink soda at all not any kind. I do drink coffee. When I have been in a flare its water water water that helps, of course pain meds are ALWAYS on hand just in case and I give myself my own DMSO treatments. I have all the meds I need on hand at all times. Ditropan is good for bladder spasms.

    So its WATER WATER WATER....

    Jean Ann
  5. Sandyz

    Sandyz New Member

    PVLady, thank you for finding that information and posting it for me. It was very helpful. Pawprints, I think too that IC seems to hit a lot of people with Fm. The support boards I looked at for IC had so many people with Fm on them. Jeanne, I will follow your advice about drinking lots of water.

    Its always helpful reading other people`s experiences, I always find tons of knowledge and tips for coping. I`m still hopeful that I can get this under control so I can have much less pain. These diseases continue to surprise me with new things to deal with. Somehow I know I will cope as I always do.
  6. Smiffy

    Smiffy Member

    I have really bad IC; I hardly ever leave the house. For me, it's a all part of the same illness as my severe FMS/CFS. Yes, my tummy is distended & I've put on weight.

    I'm taking Detrusitol, Elmiron & Amitriptylene & waiting for Botox injections. I've been offered bladder removal but don't believe it will cure the IC, merely make it spread to the surrounding tissues. I only ever drink water at room temperature & avoid spices, chocolate, tomatoes, citrus, soda, caffeine, vinegar (inc. pickles), sugar, sweeteners etc.

    You could read Dr St Amand's 'What your doctor may not tell you about fibromyalgia' (there's a new edition coming out in March)for one explanation of how IC is linked to FMS/CFS. As a long term treatment I'm hoping that the Gauifenesin protocol will help with all three conditions. best wishes

  7. Sandyz

    Sandyz New Member

    I`m sorry you have severe IC. I don`t know yet how bad mine is till I have a scope done to look at it. I can see why you feel like not leaving the house. I feel that way, I`m in so much pain.

    It was hard over the holidays because their was a lot of activities I should have gone to. I only went to a few. I was in too much pain and having to go pee every 5 minutes. Do you feel very fatigued from you IC? I`ve been way more fatigued then I normally am. I think too their has to be a big link between this and Fm. I can`t wait till that book comes out.

    It really makes me wander what`s going to hit me next with these DD.
  8. EllenComstock

    EllenComstock New Member

    I, too, have IC and have also had the same procedure that you are having done. Good luck on the 22nd. As for the Prelief, I'm sorry you've had such a hard time trying to find it. Do you have a Walgreen's in your area? I know they have it. If not, you can get on the CVS website (cvs.com-hope it's okay to put this here) and order it directly from them. I have CVS drugstores in my area, but they don't carry Prelief in their stores. I just order a large amount so I have it for awhile. It's also nice that it is delivered right to your home. They deliver it so quickly, too. If I order it on a Monday, I will usually have it by the end of the same week.

    Good luck.

    Ellen
  9. pawprints

    pawprints New Member

    Have you had any relief from the Elmiron? Or any side effects? How long have you been on it?

    Thanks for your answer.
  10. LISALOO

    LISALOO New Member

    Sorry you were diagnosed with this, but don't fear, you can get better, I never have any problems anymore unless I drink a lot of really acidity like orange juice for many days in a row. I didn't have fatigue from IC, but I had IC first before CFS. And I didn't gain weight, I actually lost by following a better diet that was recommended.

    I also did physical therapy, because your nerves in your bladder cause your muscles to tighten up causing multitudes of pain. That helped so much! I also did a low acid diet. I watched my supplements because in the beginning I couldn't take most due to pain. I also took baking soda capsules every morning (you can make your own). Helps make everything less acid. There's a bunch of other things too, see some of my other posts.

    A warning though, you can buy Prelief at Walgreens. However, make sure your calcium-magnesium balence is correct. Prelief is a calcium product. Too much calcium causes constipation which makes IC so much worse!!!

    YOu can get better, I'm in remission, a family member is also!


    Weight gain, a big reason is the antidepressants doctors put you on. Amytriptyline is notorious for people gaining weight.[This Message was Edited on 02/03/2006]
  11. LISALOO

    LISALOO New Member

    A warning on Elmiron, it made half my hair fall out so I had to quit! I think it's great to try though.
  12. kch64

    kch64 New Member


    Dear Sandy,

    IC can be so painful and that can make you more tired.

    However, if you take one teaspoon of baking soda and mix it in 16 oz of water and drink it, it will help the pain so much.

    I was diagnosed in 1992 and have been better for the last ten plus years. Every now and then it will raise its ugly head. the baking soda always helps.

    Don't take it if you have blood pressure problems. you can take it twice a day (12 hours). Also, my urologist said to use the baking soda and in between, chew tums. The key is to alkalize the urine.

    Hugs and hope you feel better soon. Remember, the pain can get better.

    Kendra
  13. Cromwell

    Cromwell New Member

    then it suddenly vanished. I still have to be careful and do avoid s........x as I still have to take an antibiotic one time pill if we do. DH is very understanding, but I fear the pain coming back. There used to be(in UK) a great remedy that the chemist would make up in a bottle-smelled like pears, it used to work so well and I wonder if it is still available in UK or Canada. I cannot recall the name just this is ALL that was then available for IC. Watch you don't get into PID (pelvic Infamatory Disease) as unchecked IC can lead into this. I had a horrid time with it. Good Luck, the pain is awful and you dare not leave the house.
    Love Anne
  14. It is miserable and Very painful. The urologists nurse told me to try cranberry capsules. But I don't know about them. I would be afraid it would make it worse. Also something called Aso helps alot of people. Anyone ever heard of that?
  15. gkrrt

    gkrrt New Member

    I was diagnosed 4 years ago with IC and with Fibro last year, I have to get the cysto w/hydro once a year. If you really watch what you eat and for me mostly what I drink that might help with some of the pain. I could not take the elmorin. I had many instillations that never helped for longer than a day. But I have noticed lately that when my fibro flares so does my IC and my IBS.... Now I drink atleast 10 bottles of water a day and take ultram if I can not stand the pain of one or both of them. I would just like to know will this all get worse as I age I am 42 and today feel like I am alot older. Someone please reply...
  16. LISALOO

    LISALOO New Member

    DO NOT TAKE CRANBERRY WITH IC. This is only good if you're normal with a normal UTI. It helps with bacteria.

    If you have IC, it's acidic, it will burn your bladder!
  17. gkrrt

    gkrrt New Member

    Cranberry is very bad on a patient with IC....... I would ask the Doctor why his nurse would tell you to take that. Are you going to a urologist?
  18. Yes a urologist's nurse told me that! I know better, I will mention it to him when I go. I was told cranberry juice helps some people, others it makes it worse and thats me, also Orange JUICE makes it really worse too! OMG!
    Has anyone heard of ASO? Does it help?
  19. mary124

    mary124 New Member

    I have had this painful condition for over 16 years. Probably before that as it took forever to be dx with it as the doctor said I was too young for it. The only meds that I'm on is Elmiron and I take pain meds. I have a hydro every 6-8 months which helps. (that was how I was dx).
    At first I was doing DMSO treatments but they stopped working). Drinking lots of water, watching your diet, staying away from coke, coffee, etc. I still drink my coffee -- I limit it to 1 cup a day. and if I go out to lunch I might have a rootbeer that is considered a "safe drink" I'm not overly diet sensitive though. There is a great website/support group on line (IC network) if you have any question they or anyone of us who has this can pretty much help you. You got to find yourself a uro who understands/treats this - not just a uro as not all of them knows what they are doing (found that out as it took me 3 uros before I found the one who figured out my illness and he thought I was too young like I said (I was 32 at the time)
    Anyway, good luck.
  20. Smiffy

    Smiffy Member

    I was on Elmiron for 5 months before it started to work; from the posts on the I C Network message board I read it can take up to a year before it takes effect.Unfortunately it's making my gums bleed & giving me lovely 'farmyard bowels' (don't know how else to describe it) so I'm going to have to stop them. Some people find that it stops the side effect if they empty the capsules into a little water - they don't taste of anything.

    There's a Prelief representative on the ICN board, Sandy, so you can ask her anything you need to know.

    My CFS started long before the IC, but the fatigue has been exacerbated by having to urinate repeatedly at night & being kept awake by the pressure on the urethra- I hardly get any sleep.

    Good luck with your bladder stretch Sandy, hope it helps you. xxx