I'm out of remission

[steph4308]

Hi! I'm new here and want to introduce myself. I've been in sort of a remission for about 15 years.

Last month I was having an instillation which was 4 in a series of a new "cocktail". The next day I began a raging UTI or it could have been the beginning of this horrible flare I've been having ever since. Of course my doctor was out of town so I talked to the doc on call and got some Cipro 500 mg. Usually, with Cipro, my symptoms subside within 24 hours. Two days later (which just happened to be my birthday) I was still dying with pain. Of course that was Saturday and had to talk to a different doc on call who Rx'ed me Cipro 1000 mg and some pyridium plus.

Here I am 25 days later still flaring and very depressed thinking the good days of my remission are over. I've been treated for yeast and now my urine specimen is free of infection so this must be a flare.

My uro has thrown up his hands and said nerve stim (at the ankle) and botox are the only things he has left for me. I went through hydro, DMSO, urethra stretching (ouch!!!), and fulguration sp? when first diagnosed 20 years ago. I have been having lidocaine instillations for about three years now and been leading a very normal life (except around my period when I get minor flares and sometimes UTIs).

Has anyone else experienced coming out of a remission like this? Any suggestions? I've been seeing my chiropractor for adjustments, accupuncture and nutritional advice this week. I'm taking pyridium four times a day and Lortab a couple times a day for pain. The real kicker (and I do mean if feels like a porcupine kicking) is this painful spasming. I'm driving down the road and suddenly feel like I'm going into labor!

Any advice?

[BethW]

Hi Steph, welcome to the boards. I'm sorry you are having such a bad time.

I've had IC going on 6 years now (altho probably had it much longer). My last 'flare' lasted from February to June. May I was in so much agony that I literally cried in bed for the entire month. Some things that did help somewhat: baking soda/water, eliminating wheat and gluten (I also dont eat dairy or soy) from my diet - this helped with the burning alot, having my urine broth cultured (it came back positive for infection altho the regular way cultured negative).

I am allergic to cypro and I find augmentin works best for me. I took it and amoxycillin for 7 weeks at varying strengths. I've just come off it and had my urine broth cultured again this past week (still waiting for results).

I am having surgery this coming week (Wed) to rule out any gyn or other probs that may be contributing to the pain.

I see a chiropractor too and I find regular adjustments do seem to help my bladder. hope the above helps! Let us know how you're getting on.

Take care. BethW

[~*~Christine~*~]

:welcome:
I'm sorry you're in so much pain. I totally understand what you mean about the spasms feeling like labour, what a perfect way to put it :lmao:

*hugs* :grouphug:

[crystilclear]

Oh how aweful to be in pain like that on your birthday especially! Sorry you're having so much pain. I hope it resides soon and that you and your doctors find something that helps. Hang in there! Take care - Chris

[ICNDonna]

If the hydro you had when you were diagnosed helped ease your symptoms, you might talk with your doctor about considering another. Hydrodistentions has been a major treatment for me for my 29 years with IC and they always seem to help. I will be having another in three days.

Sending warm healing thoughts,
Donna

[steph4308]

Thanks for all the encouragement. This board has been a lifesaver!!!!! Things have improved so much since the 80's.