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Diagnosed with IC, now what? Diagnosed with IC, now what?

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Unread 04-24-2008, 10:38 PM
Diagnosed with IC, now what?

Hi Sisters,

Well 2 weeks ago I went in for a urogynological exam, did the whole ultra sound and urodynamics thing. The procedure left me in so much pain that the doctor was certain I have IC.

I had to go back in and have the nurse give me a "Bladder Cocktail" to calm things down. Well, that didn't work. I was told to take pyridian 3x day and vicodin for the pain. They gave me a folder full of stuff to read on IC. I have been following the elimination diet for 2 weeks now. . . nothing is getting better. How long does the diet take to help calm things down. The exam has left me in "flare-up" mode and nothing is working. I am taking the Preleif, Quercetin, and this is driving me crazy. My next appointment with the IC Nurse is 5/19 and I called tonight and left a message asking her to call me.

Anyone else have this kind of reaction to caths and exams? What do you do to cope?
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Unread 04-25-2008, 12:59 PM
Diagnosed with IC, now what?

IC is a terrible thing to have! Here's a forum you can visit and get tons of information.... ic-network.com. Go READ, READ, READ. You'll be glad you did!!!

I take Prosed DS - 3-4 times daily - and that controls the spasms. I also watch what I eat... I can NOT have citrus, especially lemon. I can't have Tea - even decaf. The Only time I drink tea is when I go out to eat and that's not often....however, most of the time now I drink water.
Spicy foods bother me a little - I've changed from eating out of cans to buying frozen veggies - that made a big difference too.

Also, walking on a treadmill kills me! But, I can walk outside or do the Walk Away the pounds dvd's and am fine. Riding in vehicles without getting out ever so often hurts me, sitting on hard surfaces hurts. When I go to my son's football games, I take a "boat seat" to sit on....yes, a regular boat seat! People look at me kinda crazy, but they are more comfortable than the hard bleachers. If I were to sit in the stadium without that boat seat, they would be calling an ambulance to help me get up and walk!

Also, when I have a spasm or flare up, my feet hurt! They hurt also after I've sat for a while without getting up - like riding for an hour or sleeping - some mornings are worse than others......It's all from the IC.

The cath. is the reason they found I had IC. I've had it for years but didn't know that's what it was - I never had the frequency/urgency issue...well, I did once - mostly just low back pain. There were times I couldn't get up, couldn't get out of bed without help, etc. Sometimes I would bend over to pick something up and couldn't straighten back up....things like that.

Sometimes the pain would be so bad, I would hurt in the groin, and down my legs.

It's been a few years since I had a bad flare, but I have spasms all the time.

Visit the site, I assure you that you will find help there!
Unread 04-25-2008, 05:53 PM
Diagnosed with IC, now what?

I've been told that I have IC, but I don't have urgency and only go about one time during the night. I only have pain after a bm in the morning, which last all day, so I have wondered if it is truly the IC. I am sure I have rectal or bowel problems, but can't tell what is what. Does a bm
make anybody else start having pain? One thing I am sure
affects me is soft drinks, I seldom have one but if I do, I am in misery, and I do believe spicy foods make it worse.
I have no pain at night, once I lie down I am ok.
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Unread 04-25-2008, 07:12 PM
Diagnosed with IC, now what?

I have been taking hydroxyzine since I was diagnosed with IC (via a cystoscopy with hydrodistention) a few months ago and I have found it has helped my pain, even without tweaking my diet. I did have food allergy sensetivity testing done so I know what foods I can eliminate from my diet if the medication does not continue to work.

It can take a lot of trial an error to find which regime works for you as we all react a bit differently. I would suggest keeping a pain diary regarding all of your symptoms that you can share with your nurses and doctors.

Keep reading all you can about IC and in there! S
Unread 05-04-2008, 11:17 PM
Diagnosed with IC, now what?

Thank you all for your input. I have spoken with my treating nurse & she rx`d the hydrox[sp?] it seems to be helping a little. I guess I will learn more on 5/19 about treatment and I have been spending as much time as I can reading on the icnetwork.com site. Thanks again everyone!
Unread 05-08-2008, 06:03 PM
Diagnosed with IC, now what?

Regarding IC flare-up. I had 10 of the rescue remedy cocktails instilled in bladder. It got a bit better, but what I think really helped and finally made it all go away was taking Benadryl. I first took 2 per night and then 3 per night and had almost instant relief from the first time. Don't know if it was coincidental, but it seemed to fix it. I never took the Elmiron that had been prescribed.
Good luck! I know how miserable the whole thing can be.
Unread 05-09-2008, 10:32 AM
Diagnosed with IC, now what?

Yes, that is one of the things they prescribe. Do you take 2 at a time at night or take 1 and intervals? I had it real bad yesterday and I heated a rice bag when I got home and layed down and sat on the rice bag, the heat seems to help. I was in a lot of pain.
Unread 05-09-2008, 01:24 PM
Diagnosed with IC, now what?

The Benadryl I took 2 or 3 at night only.
I've been thinking that some of my pelvic discomfort may stem from adhesions - am 9 months post TLH and still having pain in scar and on either side. What are adhesions about? What can be done for that?

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