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Discussion Starter · #1 ·
I was wondering if anyone else here has interstitial cystitis. I was diagnosed a couple years ago. It's a chronic inflammatory bladder disease. I have read that many people w/ IC also have IBS. I developed IBS around the same time my bladder symptoms began.(10 years ago) I know IC is considered an autoimmune disease, and I'm wondering if IBS is also? It just seems so many of these problems are related. Do many of you have bladder problems? Also can IBS cause kidney-like pain,or pain in the appendix area? I have had that particular pain for years, and at times it's quite severe.Been checked for appendix, kidney stones etc. and nothing has been found. It radiates into my right back/kidney area. It just came to me after reading all your posts, that this IBS could have something to do with it. I guess until coming here, I didn't realize how IBS can effect so much of the body. By the way, thanks for making me feel so welcome here. I hope all of us find relief from IBS soon.
penelope
 

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Penelope -- I wasn't aware that IBS and interstitial (sp?) cystitis were in any way related, but I can tell you that the current thinking on IBS is NOT that it is an autoimmune disease. It is thought to be caused by a "short" somewhere in the connection between the brain and the nerves in the colon, causing it to spasm irregularly. The cause is unknown, but it often follows some gastrointestinal episode of some trauma, such as food poisoning, water contamination, certain antibiotics, gall bladder removal, even having a baby. The pain it causes definitely refers to the back, although I'm not sure about the kidneys. It can be right under the ribs, on the right or left side, or just an overall sensation. Maybe if you don't get enough answers, you should repost this with a more specific subject head. P.S. Many people on this board have spoken of their bladder problems though, and many feel that, especially in women, things being so close, IBS might cause a kind of bladder incontinence, too. Hard to say, as some of us women have that anyway, to a certain degree. P.S. A [This message has been edited by Persistance (edited 11-11-1999).]
 
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FYI -- my bladder doesn't seem to be quite so overactive as earlier now - since I've been taking Mg and other stuff...interesting.
 

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Penelope, have you checked out the website at www.ichelp.com? Lots of good info, plus they list IBS as a "related disease." I'm presently in the middle of an urology workup to find out why I keep having bladder infection symptoms, sometimes when there's no bacteria detectible. Could this be Iterstitial Cystitis? On Monday I had a catheter "emptying test" and I'm still hurting, so I'm not looking forward to the cystoscope on the 29th. How were you diagnosed and what kind of treatment are they giving you? (Same questions to JanetMD.) If you are D types, do you also notice that the bladder problems are worse just before an IBS attack, but improve somewhat afterward?
 
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Penelope,Though I have never been diagnosed with anything but an overactive Mind...I have had symptoms like pressure/discomfort in the urinary area , that sound just like UTI's, though all the tests are always negative. Someone on another bbs, told me it sounded like that Intercy....whatever..so I found it funny that you mentioned it. I also should add that I don't Know if I have IBS or not...I sure do have the symptoms of BOTH!!!
 
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I get a lot of pain on my right side and into my back when I am having a lot of trouble with D. I've been told that IBS pain is usually on left but mine has always been on right. Can get really really bad when traveling but my husband and I love to travel/camp whenever we get the chance so I try to deal with the pain. Been tested for appendix and gall bladder in addition to all other colon tests. Nothing. Still scary though. I get urinary tract burning when D bothers but not so bad that I have to go to doctor. Over the years I've made sure to drink full glass of cranberry juice in the morning. That helps a lot!
 

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Discussion Starter · #7 ·
Thanks for the replies. I appreciate the feedback.Zigmissus, I was diagnosed with a cystoscopy/hydrodistension. Thats when they overfill your bladder and look for cracks or ulcers in the lining. The bladder infection symptoms w/ no bacteria is suspicous of IC, but it needs to be looked at from the inside. Have you talked to your uro about IC? Don't be surprised if he may not know much about it. Not many do because it's an uncommon disease. ( or just underdiagnosed) Please feel free to ask me whatever you want about it. I have had it for 10 years and have been through it all. I have had alot of stuff done that did more harm than good, so learn all you can about it. I also have bladder flareups when my IBS is acting up. Take care and let me know how it's going w/ the uro stuff.Sarah Jane- You could also have IC- you need to have it looked into by a uro that knows about IC. Feel free to post me about it anytime. Take care Penelope
 
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I don't have IC but very frequent Urinary tract infections (this year about 15) which got me in despair. Not only to live with one chronic desease but with two is too much to bare. That's why I'm very depressed at the moment, although I'm taking already an antidepressant. If you don't take an antidepressant I definitely would recommend to try a tricyclic, it very often helps to reduce the chronic pain of IC.Anybody have suggestions about how to improve my poor bladder health? Thanks in advance.Cornelia
 
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Dear Cornelia,Just went to the urologist yesterday after being referred for two UTIs within one month. My problem is that I get no symptoms until I run a fever! He said that I have a weak pelvic floor and cystocele and that surgery is not an option as it is not that bad and sometimes surgery makes it worse. I also have some urinary effects of menopause which serve to weaken the bladder neck, thus allowing bacteria to enter. (Estrogen can help this but I can't take estrogen due to our strong family history of breast cancer) So he put me on a prophylactic dose of Macrodantin (45 days) He said that even after your urine tests clear for bacteria- they may cling to the bladder wall, returning to cause trouble. Some hints he gave me were: drink Cranberry Juice, after urinating- lean forward and put pressure on the bladder to help it to empty, don't wait too long between urinations, of course wipe front to back, urinate immediately after sex to clean the urethra. If you have or garner any more hints, please post them. This was strange for me because I never had these infections before I turned 50! I had no idea of the joys awaiting me at the half century mark. Please remember we are all here for you and I hope you can find some relief.wpmom
 
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wpmom: I also had an ureterocele and had to undergo kidney and bladder-surgery as a child. Now there is scar tissue in the bladder wall, on which bacteria can cling easily. All the same I had intervalls of 4 years without the least bladder-problems. Please read the following, which I have found on the Interstitial-Cystitis-Association-site (address was mentioned by someone else above). I think these tips might bring some help even if somebody is not on b.c. pill. "Ever since I started using [generic name] (Desogen), an oral contraceptive, I have had decreased vaginal lubrication, urinary tract infections, vaginal infections, and my sexual desire has decreased significantly. What canyou suggest to remedy these problems?""Utilizing the birth control pill has been associated with an increased incidence of urinary tract infections (UTI) by about two to one. Also, since there is a decrease in vaginal acidity, the incidence of vaginal yeast infections can also be increased. When someone has a low level vaginal infection, lubrication also tends to be decreasedsignificantly. Hormone levels which affect sexual desire may also be affected. In any event, when one has a flare in interstitial cystitis, a UTI, vaginal infection, sexual desire tends to be diminished. Recommendations to correct these problems might include a trip to the gynecologist to get a vaginal culture including a wet mount and microscope analysis to make sure that there is not a low grade bacterial infection (vaginosis) or ovegrowth of yeast (candidiasis). If either of these conditions is found, it needs to be treated, the bacterial vaginosis with a Flagyl-based cream or antibiotics and the vaginal yeast infection with an anti-fungal agent. Once this has been accomplished, then the vagina's ecosystem should be returned to normal. Normal vaginal conditions can be maintained by several means. One is douching with lactobacillus acidophilus (available at health food stores) or by placing lactobacillus acidophilus or boric acid capsules, or aloe vera/boric acid gel, in the vagina. Some women find that taking sitz baths with eight ounces hydrogen peroxide for 20 minutes three times a week. The relativeshortness of the female urethra, about four inches, makes it easy for bacteria to travel into the bladder. Consequently, UTIs tend to increase in incidence when there are vaginal infections. Since we know that IC-affected bladders likely have a defective lining, the bacteria may adhere more readily than to the lining of a normal bladder. Things to do to prevent the urinary tract infections include: drinking 1 swallow of water every fiveminutes during the day to maintain a constant flow of urine from the kidneys, alkalizing the urine with antacid tablets, baking soda, or potassium citrate (Polycitra) or taking a cranberry pill with meals, in addition to treating any vaginal infection. One can check for the presence of infection by identifying white blood cells in the urine witha home dip stick test (a leukocyte esterase test). If white blood cells are present, previously prescribed antibioticscan be taken for 48 hours, followed up with an office visit to make sure that the infection has been eradicated.Various methods for treating recurrent UTIs are discussed in greater detail in Overcoming Bladder Disorders, which is available through ICA Resources. Kristene E. Whitmore"
 

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Discussion Starter · #11 ·
Wow, it sounds like alot of us have bladder problems. I can sure relate and feel for all of you. There is a difference between IC and other bladder disorders. It sounds like a couple of you have bacteria that wont go away. That must be so frustrating. With IC there is no bacteria and no infection. Just inflammation. It is also frustrating since there is really no treatment that works very well. I have had 3 surgeries and 25 DMSO treatments (they put it in w/ a catheter,)Those treatments made the pain much worse. I have been on painkillers daily for 1 year and a half. I just try and live w/ the pain and frequency. There are some things that help some. Staying away from acid foods- cranberry juice is horrible for people w/IC. And I take prosed which helps numb the bladder. It is important to be checked for IC, alot of women have it and don't know it. Good luck to allI do take an antidepressant which does help w/ the pain some. I am here for anyone that needs to talk bladder stuff.
penelope
 
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