Interstitial Cystitis Support Group

Hi… My name is Lori and two weeks ago had another Urodynamics Study because of retention, urgency, frequency, etc. I went for results, and the doctor said I have no bladder function, muscle left, which I predicted because of having to push to urinate, and already had catheter bag for a month last year. Does anyone have experience with self-catheterization? As an aside, I have post traumatic stress syndrome because of urethra dilation and surgery as a child, and I cannot do this. Doctor said other options were to implant another InterStim, but already have one, so forget that—redirect urethra thru belly button which attaches to container??—or a bag. Has anyone heard of these other options or has anyone been through something similar. I also have severe chronic constipation, which may leave me just one choice if I get a negative report from an upcoming colonoscopy. Any feedback would be greatly appreciated. Also, I have Fibromyalgia and I’m not coherent until 3:00 p.m. Now after two years of living in bed and only getting out for therapy once a week and other intermittent doctor appointments. Very depressed and I can’t get out of bed. I have severe pain in my Bladder and Urethra, so I’m not sure what is my purpose—I’m already seeing repeats of TV show THREE times…Yikes! Thanks… Lori

hi and welcome to the group! i do have some experience w/self cath..i had to do for awhile after last surgery...hate it n is hard for me to do but uro had a nurse to come out for a few days n help me n i finally got the hang of it. i know it may not help u but was easier for me to do it in a laying position w/bedpan, later on when i got comfortable w/it i was able to relax enough to do the other way. as far as the interstim i have no experience, there was a lady on here that had it and it worked for her but i havent talked to her in awhile.

after last surgery uro told me i could never have a normal bm, i have no pelvic floor muscles and pushing to pee is very, very bad! i do take stool softners every day, i had a problem w/consitpation a few wks back n i changed pills n started taking colace w/a stimulant. i have found w/it i dont have to take every single day, i take it 3 x's a wk n it solved my problem. pain pills, calcium, n alot of other pills we have to take will contribute to constipation.

i 2 have fibro w/ic n arthritis! the first yr was the hardest for me as far as fatigue, i take tramadol n zanaflex 3x's a day n they pretty much keep me going unless i have a bad flare! i am lucky n i dont have constant pain w/either of these mostly a change of weather for fibro n arthur or if i slip up n eat something i am not supposed to w/my ic . the ic diet helps me alot!

sorry u r having such a time but i am glad u have joined our group. maybe some of the others will be along to help answer some of ur questions!

hugs,

blondee

Post edited by: blondee8257, at: 01/31/2012 07:10 AM

Hi!

It’s funny… I know I’ve read that Fibromyalgia, IC, pelvic floor are closely related. So, were you able to stop self-cath after a while? May I ask, how long did you have to do it and do you have to only do it from time to time? Do you still have to? Dr. makes it sound like this is permanent. Are there any questions you think I should ask before starting this process. It sounds so bad, that I want to opt for a surgical procedure instead of doing self-catheter. Also, what foods are know to provoke an IC episode? Thanks for the info—I appreciate it.

Lori

i only had to for a month or so...if i take a long trip...and trust me that doesnt happen often...i sometimes have to cath. i always carry one just in case. as long as i get off my feet n not stay on them or try and do 2 much im ok. i really get afraid that i will have to do it all the time later on just cause i hate it so bad..lol. no, i dont blame u, if i knew a procedure would work i might be tempted to do it also.

anything acidic is bad..juices, tomatoes, even some drugs do not sit well with an ic bladder. here is a link to some foods to try n some to avoid:

http://www.ic-diet.com/IC%20Diet%20and%20Food%20List.html

i have a list in the one of the forums of ic no no's 2. doesnt help everyone, but it does work for me. there is also an over the counter pill u can take to help cut down on the acid..i think the name is prelief. some of the ladies here take it n it seems to help them.