My Bladder Is Driving Me Crazy

[TexasHoney]

(Anyone who doubts how difficult an IC flare can be should just read this post. Wow! It described my IC flares perfectly and the frustration that we've all felt at any one time. Remember, flares are often the result of a direct irritation to the bladder... by foods, by hormones, etc. A flare can also be the result of a pelvic floor spasm. I had whoppers after driving. So, be a detective and try to determine what could have contributed to this flare. Most of all, calm and soothe your bladder! No coffees or sodas please! - Jill O.)

Today is Day #5 of my latest horrible, ridiculous flare. Monday I went to the uro and the inital test showed no infection present. I just got the results back on the culture. Same @%#$! thing, no infection found. The burning has been really bad today after a slight decrease yesterday. I feel like I am just spinning my wheels taking all these meds and I still have to keep dealing with these awful flares. I worked from home Monday after my appt with my uro. I worked all day at the office Tuesday but I called in sick the last 2 days( no working at all) to see if complete rest would help. I felt a little improvement last night but today I feel as lousy as ever My bladder feels like it is being slashed with razor blades and I am peeing every 15-20 minutes most of the time it's only a few dribblescoming out I can't ever seem to completely empty my bladder. I am sooooooo frustrated. It may be my hunner's coming back. I just don't know. I desperately need to find some kind of permanent relief from this debillitating disease. I am looking into to trying Cytotec but I am worried about the side effects. I sure wish somone could find a cure for this crazy mess so none of us would have to go through all this crap. I am sick and tired of being sick and tired.

[meme]

I feel ya! I hate those flares that seem to last for days at a time w/ no rhyme of reason for them. I've been battling some sort of infection now for two weeks and its starting to really get me down. When I flare I try to just take it easy and wait it out-hoping it'll calm down by the next day..but then by the 3-4th day I just can't take it anymore!!!!! Everytime I have a flare it sets me back. I just had a great 4mo remission and all its taking is this 2wks to start to make me feel down again. I hate this!!!!!!!!

[hensleyi]

I am sorry that you are feeling so bad. Please take care and feel better soon!

[Berkshire Road]

When that happens, what works best for me is heparin-lidocaine instillations. We can do them at home now (a lot of doctors will set patients up to do them), and we do them regularly twice a week. But when a BAD flare like the one you're having hits, we do them twice a day. So far, it's headed off two that I thought were going to last and be bad.

Do you do instillations? If not, you should look into it.

[icnmgrjill]

Just to follow up with what Carolyn has said. Rescue instillations can be very helpful in stopping flares in their tracks. Definitely worth considering and/or learning more about. We have a chapter on rescue instills in our patient handbook! http://www.ic-network.com/handbook/

Jill

[tigger_gal]

I am so sorry you are flairing.. I am in the same boat. I went to the uro too and told him I have been in unbeliveable pain since Jan 11th.. I can't sit with my legs down because the pain is so bad..
sending you big hugs and hoping you feel better soon.

[ICNDonna]

I wish I could be there to just sit with you and talk for a while.

Sending gentle cyber hugs,
Donna

[TexasHoney]

Thanks Gals, I love each and every one of you!

Hello, Everyone.

I just want to say thanks for your replies and concern. I can hardly begin to say how much I appreciate the support and understanding I get through communicating with y'all on these boards. I don't what I would do without it. Jill, thanks for the courage award, although I am not sure I really deserve it due to all the complaining I do in my posts.

To answer Carolyn's question: I have been doing Heparin/Lidocaine instills at home on and off for about the last year and a half, somtimes as much as 2-3 times a week but not consistently. It seems to me sometimes they help and somtimes they don't. I rarely drink the sodas anymore. Maybe 2 or 3 a week at the most. I have probably drank no more than 5 cups of coffee in the last month or so. I drink as much water as I can. I am watching what I eat fairly well. Dealing with IC has been the most difficult thing I have ever dealt with in my whole life. I am probably going to try Cytoec next. Maybe one of these days I will find something that will give me some long lasting relief. I keep hoping and praying for a cure but I know that may still be a long ways down the road. This disease has taken so much from me but I determined to beat it one way or another. Once again I want say how much I appreciate everyone's support, advice and concern. I don't know what I would without you gals. My family and friends for the most part try to understand but as I and many of you have stated," Only a fellow ICer can truly understand what we go through in dealing with this horrible disease."
Let's all keep praying for a cure.

TexasHoney
Love Y'all