Been gone too long

[tbokay]

I was trying to live my life without coming here for support (haven't been here since Dec 8, 2006). The past month has not been good and my mom suggested I talk to people who understand and I can vent. So here the short version:

Mid-February I went into retention and had to have a foley catheter while at ER. They sent me home with it in place and I took Percocet when I got home. A couple of hours later I got up to get a drink. Well, being on a pain killer made me light-headed so I quickly hopped back into bed ... kneeling on the tubing and yanking it out with balloon still inserted!!!! So 4 hrs after leaving ER, I was back for a new one. This time it really burned and I left there in tears! (The doc refused to give me pain meds cuz I have Percocet at home).

After a week, my urologist removed the catheter and I've been doing "okay" since ... except this week. I left a urine sample on Monday and was told I had 8WBC and some bacteria so they started Levaquin for 10 days. Then 2 days later I got a phone call that the culture results were negative for growth and told to stop the antibiotic (I'm on it way too often for infections!)

Anyway, here I am Friday night with not much improvement. I see my urologist in April for my 6-month follow-up from his cystocopy and I'm going to ask about the surgery to tie-up the bladder. I think that is what is causing the infections cuz I retain urine so often ... plus I leak almost daily despite doing Kegel exercises for the past 2 months.

My uro mentioned the tie-up surgery at my 3-month check-up but he doesn't really want to do it cuz I am of child-bearing age and may want kids (if I ever get married) ... but at this point, I am willing to sacrifice biological children in order to have less bladder issues!

I've tried different antibiotics, preventative antibiotics, physical therapy, self-cath, scheduled voids, diet changes, pyridium, muscle relaxers, pain killers, anti-depressants, deterol xl, kegel exercises ... and 2 1/2 yrs after diagnosis I'm having more trouble.

Any suggestions??

[Moonheart]

I don't have any real good suggestions, just wanted to welcome you back, give you a big HUG, and tell you that you're a smart cookie for coming back for the support offered here. I wouldn't make it without this place. Everyone is such a help to me!

So glad you are here and hope you start feeling better soon!

Moonheart

[leelee88]

I am so sorry you are having such a tough time..I dont have any advice it seems you have already tried most of everything..I just want to let you know I will be praying for you.. I hope you get over this hump and feel better soon..(((((((hugs))))))))))

[Sarojini]

Good to see you again! I'm really sorry you have had to go through so much the last couple of months... I don't really have any advice but I'm sending some s

[tigger_gal]

Sending you big hugs... I couldn't imagine the pain of ripping a cath out.
welcome back.

[amartaingirl]

geeze we have alot in common
i am also 32
no kids
a cat
no husband
and ic

if only you were a man..would we be perfect for each other
and we would understand the probelms we have.

my boyfriend..doesnt understand the illness..and we fought about it last night
..because he was dilly dallying..and i had to pee!

heaven help us

if it makes you feel any better...i have been flaring since tuesday myself

if burning is you main complaint
it may stil be from the tear.from the balloon...i cant even imagine how that felt..your a stronger woman than me...
so that means you have the mow the lawn...and change oil in the cars..dear
lol
but try drink water w/ tbspn of baking soda it


i don't have alot of abdominal pain w/ mine
my complaint is mostly freqeuncy and burning

[tbokay]

amartaingirl ... thanks for the chuckle.

Actually it took a minute to realize what I did and why my leg and bed were getting wet - pain killers tend to slow my brain processing down ... but once the pain signal finally registered in my brain ... oh my goodness!!!

After a few minutes, I called my mom who couldn't understand me thru the crying/screaming and then asked if we could wait till 7:30am when urgent care opened to go back (this was at about 2:30am).... NO WAY!!! I'm not a demanding person but that night I was definitely demanding which could explain why the doc didn't give me pain meds cuz I was demanding something stronger than my Percocet.

Anyway, my main complaint is just the tearing/stabbing/burning sensation of the bladder. It usually burns when I urinate so I can't use that as a symptom anymore cuz it's my "normal". It's just that feeling that someone is making tiny slices in my bladder and then pouring on the lemon acid.

I've been doing a lifestyle change the last two months that involves exercise and healthy foods ... I've lost 10lbs so far but this week I just can't motivate myself to exercise cuz I hurt and when I do bend I leak on myself.

I wish I knew people locally or knew of a support group in my area that could offer more support. I love my mom but I think she is burned out with supporting me emotionally and sometimes financially to get the meds I need.

When are they going to find a cure for us IC-sufferers?!?!?!?

[jen74]

Wow, that is so scary what you are having to deal with. I am so sorry. Did they say why you all of a sudden could not pee? Maybe it would be easier if you coule self-cath every so often instead of having a foley in all the time. That seems like it would be very painful. IS there a reason why they wont let you just self-cath intermittently?
I hope and pray you get to feeling better soon.
Jen

[Kara29]

Tara

Dear Tara,

I'm not sure what suggestions to offer to you but I can tell you I understand.
I understand about what happened with your Foley Catheter. I had a Foley Catheter balloon rupture inside of my bladder one time while I was sound alseep. I've also had suprapubic catheters that have gotten stuck and would not come out even after deflated. I understand the pain.

You are doing so well with following the IC way of life! I commend you for sticking with a routine. One thing I would like to say is that nothing about IC is ever normal so don't feel as though you have to minimize your symptoms to yourself, a doctor, or anyone else. Having a foley ripped out of you is considered a major, painful emergency. Pain medication was a MUST for that situation.

As far as local support....I am not sure. You could check out this message for talk about IC in the Chicago area and maybe meet someone close to you. http://www.ic-network.com/forum/showthread.php?t=33629

Lots of HUGS!

Kara

[tbokay]

Jen74 - I do self-cath when needed but that night I couldn't get the catheter in for some reason. I usually get a Foley if I have to self-cath more than a couple of days as it irritates my urethra so badly that it just increases the inflammation and pain.

My urologist said I am an enigma (sp?) to him cuz most people with IC don't have retention but rather the frequency/urgency. When he did the in-office cystoscopy to measure the bladder capacity he noted that my bladder muscle isn't very strong so if I get too much urine (200cc or more) I do have issues with expelling it without use of catheter.

I left church early today cuz my abdomen hurts so bad. I feel flushed but no fever. I'm nauseated, lightheaded and have a headache. I think it's time for some pain meds and try to sleep today ... and of course, it's a nice sunny day (but still on chilling side).

[jen74]

Hi Tara.
Sorry you are not feeling well today. I hope you start to feel better.
When you have to have a foley cath in for days at a time, does it cause you extreme pain? I have soooo much pain in my bladder and urethra that I cant imagine all the pain a cath left in would cause me.

I am sorry you have to deal with that. Do they have any clue what caused you to get IC? I get so frustrated with the uro doctors because I honestly dont think they know anything about IC really, just that they are guessing. My Gastroenterologist, who is about the only doctor I have that seems to know anything, and is very knowledgable, told me that urologists are still in the dark ages when it comes to IC and that it will likely be years and years and years before they even get close to finding a cure or even a reason for why some women get it. That is pretty scary.
I do hope you get to feeling better real soon.
Jen