Does anyone work with any interstitial cytitis patients? Does anyone have any particular knowledge or experiences with this disease? I personally was diagnosed with it when I was 20 and since there is no cure and it is not understood very well, I just wanted to know if anyone has run into any patients with it. There are around 700,000 people in America with it, that is, that are reported.
Jun 25, '03
I knew a friend in the past who had it. She felt like she had a UTI all the time. She had taken tons of antibiotics, and nothing helped. She ended up with a hysterectomy for other reasons, and the symptoms diminished.
Another friend, with the same symptoms, was kept on a prophylactic dose of antibiotics, but she felt like she had a UTI all the time. Moved and lost touch with her. I'm not sure what happened in the end. Sorry I don't have more to report.
Jun 25, '03
hi! i was diagnosed with ic when i was 17. since age 4, i had been living with either infections or just feeling like i had one (pain, frequency, and/or incontinence). i have seen several doctors, and they all tell me a different story.
in the last few years, the way i have "controlled" my symptoms is by having a cystoscopy w/dmso under general anesthetic every 6 - 9 months, depending on how my bladder is behaving. it has worked, except the last couple of times. i had one mid-march, and it only lasted until mid-june. actually, i have been hurting all day today. i just finished taking a pyridium plus & detrol. hopefully, they will kick in soon!
how are you surviving? i am so sorry that you have to go through this.
Jun 25, '03
I don't want to give the impression that I know very much about this disorder. I don't.
I have had a patient with interstitial cystitis, though.
I was working on an oncology floor. We sometimes got the IC pts there for pain management. The one pt I distinctly remember with IC was a young woman from Michigan (I think Michigan anyway). I was working in Memphis so it was odd to have someone from so far away as a pt. She had come to Memphis to see one of our docs. He was touted as one of the leading doctors in the management of IC. Because of the mystery surrounding IC there didn't seem to be any surplus of docs that really knew much about it.
She c/o constant discomfort. She had a PCA pump. She had a TENS unit. She intermittently catheterized herself.
Good luck to you in finding out the information you want. I haven't worked onco in a few years and honestly this is the first time I've heard that term since leaving.
Jun 25, '03
Thanks for replying all. Since I was diagnosed last year, I have went through about an 8 month period of denial. A kind of denial where I know I have this, but I want to act like I don't. So I just stopped taking the medication I am supposed to take and I kept drinking coke and ice tea with sweet and low. Ice tea with sweet and low is my favorite thing to drink, but it makes my condition worse so badly. Meanwhile, by ignoring my problem, I waste a lot of time because I am always going to the bathroom. I waste a lot of time not sleeping because I get up every 15 minutes to go to the bathroom. I fantasize about having a cathetar. Also, my sex life with my husband has significantly changed. I got married only 4 months before I was diagnosed with this condition. Anyway, a few weeks ago I started looking up info. on interstitial cytitis and it made me want to approach my situation differently. I want to be more responsible for my condition in an effort to improve my quality of life and my sexual intimacy with my husband who has been suffereing along with me because of my lack of desire for sex. I feel like I owe him to at least take my medication. I hate this medication though because I am supposed to take it 3 times a day and at least 2 hours before and after I eat and with a glass of water. It is hard for me to fulfill those guidelines even though it should not be. I feel ashamed because I have not been taking responsibility over my body. Luckily, although I have this condition, I do not suffer as much as some people with this condition do. I wish we knew what caused it. I hope that in my lifetime, we will learn more. I really think it is quite probable that it is an unidentified bacteria or virus. I always wonder why I have this, but I guess I shouldnt wonder, I should just be thankful it is not worse, or that I do not have a worse condition or disease. But I do worry that this will make me at higher risk for bladder cancer or other urinary problems when I am older. What is a cystoscopy w/ DMSO? Does it hurt? Does it hurt to self-cathaterize?
Jun 25, '03
with my cystoscopes, they always put me under general anesthetic. if they don't, my bladder starts spasming & shoots the dmso right back out. it does hurt "like the dickens" when the anesthesia wears off, & you have to hold the dmso in your bladder for a few minutes. at that time, the nurse usually gives me something for the pain.
if you don't mind me for asking, what medication are you on? this doctor has me trying out a low dose antibiotic for 90 days.
i totally understand about your intimacy with your husband. my husband has been a complete angel! he has been so understanding. i guess our husbands/significant others have to be.
if you want to "talk" anymore, please feel free to pm me.
Sep 7, '03
I'm glad I read this.It is a comfort to know that I am not crazy and not the only one out there with constant recurrent uti and kidney infections.I have been cursed with this for many years off and on.No one seems to have any answers or each md has a different answer.My primary is perplexed at the # of infections over 2 years alone.We have tried all kinds of abt trials and med concoctions as a tx and preventative.Every 3-4 months or less I end up in the er ,same dx(complicated uti with acute pyelonephritis).Last Feb I was on 40 days of cipro 1000 mg aday between all the md visits.Good until june when I was put on 14 days of cipro and 4 days of tequin.Two weeks ago another trip to the er(couldnt make it 4 days to see the md as scheduled).The symptoms are always the same for two years.Pain under my right rib cage near my liver,right sided flank pain,and severe RLQ tenderness and pain,mabye bladder tenderness or not depending on the severity of the infection,and no classic uti symptoms until I am really sick(such as dysuria,fever,etc).I was tested for everything as a cause and nothing other than uti.I have been tested for it all in the last two weeks and no answers.
levaquin 500 mg X 8 days didnt touch this.Im starting to feel the pain again x 2 days.Anyone else heard of this and any suggestions?
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