Uh - how many are really here?

[mom2.0]

I saw a lot of NON-IC questions on this forum...  are there actually more than a few IC patients on this forum?  Just curiuos....

[Steve_MHModerator]

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[altered_ego]

I've had IC for yrs,  just joined, but saw your post. I used to have to go to the ER for pain, but it's not so bad now. There are tricks of IC. I just had a (saline solution stretch under general anesthesia) aka hydrodistention or hydrodilation on 1/15. That will help me for about 6 mo. If you have one again, ask them to cauterize any pinpoint hemorghes they find. It will help more. You can sit in a warm bathtub with a full box of baking soda 20 minutes, it alkanalizes the urine and drink 1/4 teas of baking soda stirred into 1/4 Cup bottled water, do this 2x if you need to followed by a glass of bottled water NEVER drink city water, they add chlorine, ouch!!!. Watch your diet for acid foods, also can try cystoprotek, you can get it online, but it's a little expensive. I have also taken Tums(calcium) and Manganese,once a day check it out here http://www.ic-network.com/handbook/vitamins.html ... I am doing bladder installations at home with prescription meds that are covered by medicare. They call it a "cocktail" it helps with the burning and spasms even though I hate dealing with this, I am also a mom and school at home. I left the recipe here, in case I don't find my way back and get lost out in webspace. I had a reaction to Kenalog, so I leave that out on me.
20ml  Lidocaine Liquid 2%(Bottle)
10ml  Lidocaine Jelly 2% (put a little on the end of your catheter too, feels great)
10ml Marcaine 0.5%
5ml Sodium Bicarbonate
40mg. (1ml) Kenalog
80mg Gentamycin
20,000 Units Heparin

I place all ingredients into sterile container shake well.  Draw ingredients up into a sterile 60ml sterile syringe.  Place the syringe back into the holder until you catheterize yourself to keep it sterile. Roll end of catheter you are going to insert into more lidocaine jelly, it will numb your urethra. After you cath insert ingred. in opposite end of cath and into bladder, make sure you don't have alot of air in the 60ml syringe or your bladder will feel more full and it might cause more discomfort.
I hold this in my bladder for up to 2 hours or as long as you can and then just go potty.  AHH relief -The first time it might not work well, the 2nd time better, the 3rd time Hallelujah!!!  I do this 2-3 times a week or as needed. Cathing myself freaked me out at first, I cryed for 3 hours that I couldn't do it, but you do get used to it and it's not as bad as it sounds. Good Luck and God Bless, I hope this helps you -PS get the IC handbook, not sure if that's the name.

[Beadbaby]

I have been dx with IC--pretty devastated after that.  It takes a long time to prepare 3 meals a day plus snacks.  I posted some info. you may want to read...  I rec natural.  It worked for me. I had a cystoscope the day after Thanksgiving because abx. didn't work anymore and my cultures were coming back neg.  No baterial growth.  So, my bladder I believe is from a lifetime of crappy diet and constantly keeping the inflammation at bay some of the time with no real success.  Not to mention allergies.  I have had hayfever since childhood, thyroid issues and now this---this is the BIG one.  So, I'm looking into it and feeling great most days--depending on what I eat!  I'm tired of water I'll tell you that--but now I actually CRAVE it.

Good luck to you--there is hope--diet seems to be the main factor--I LOVE to cook, bit of a foodie--now this is quite a change but once you wrap your brain around it--you can do it--I lost 6 lbs already.  

[ANN953]

Uh yah, back to the question..... Are there any true IC patients here??  It would be nice to talk to someone who has IC/PBS to see if maybe there is something out there I have not tired yet to relieve my symptoms.  I am having a very hard time with pain, (even though I take pain killers) and frequency.  I have tried Elimiron (didn't work) and I forgot what it's called but the procedure where they put the saline solution in your bladder and stretch it as ar as it will go. They say sometimes that gives a little releif. Not for me. Let me know if there is any one out there who has some ideas or just wants to talk about what they are going through.   Thanks!  

[annieannie1]

Hello Totie, sounds interesting, since I dont have any symptoms for over a month now, just the urgency and freqquency to pee all the time, and it is getting worse whenever I am in public, was that the same for you?

[Totie]

I was told I had IC back in Dec 08; but I don't believe that was my problem.

I had a lot of tests done to figure out my CONSTANT URINATION (about 40 times a day). I did have some burning during urination, but nothing really painful and it would come and go.

They did the cystoscopy and discovered my bladder wall was inflammed, so I was on Bactrim for 6 months. I also had a flow test done (forget what they call it) where you actually stand up and urinate while the x-ray machine takes pictures. Turns out I had a slightly fallen bladder....

Had the sling procedure done in June 09, and I can honestly say, I think that was my problem. I can hold my urine longer (up to 3hrs, compared to 15mins.). My 40 times has been down to about 10-15 times depending on what I drink. I don't have any pain.

I don't think I ever had IC.