My IC is progressing : (

[Holly G.]

Before I knew I had IC, I would get these funny little feelings of mild bladder infections, they would last a day or so. Sometimes they would it would just feel like a yucky bladder, other times it would be the same, but with increased frequency.

I've been doing the IC diet for about 2 weeks now, I first started because I thought I may as well to something right for my body even though foods weren't affecting my bladder, it was mostly coffee and soda. Now that I'm on the diet, I'm having a flare almost every night. I'm watching what I eat and it's getting worse. No pain, but pressure, irritation and the feeling of constantly wanting to go to the bathroom.

It is much worse at night. Even though my IC is mild, I think it's mild, I am suffering. Can anyone tell me it's going to get better? I haven't started meds. yet. I have had a couple if Heparin instills a few weeks ago and that was it.
I drank some Sodium bicarbonate mixed with water and I'm hoping it will calm things down. I just really need some support, my friends love me, but don't understand this. Thanks so much...I'm scared and in tears.

~Holly

[Julie B]

((((((((((((((((((((((Holly)))))))))))))))))))))))))

You are right, even people who love us may not understand or may get tired of hearing about our situation. Jill actually has a great video on here about talking with your spouse....

http://www.youtube.com/watch?v=dY6gtdYl6hk

These videos are completely amazing, so do a search for interstitial cystitis on YouTube, or look for them here.

[leelee88]

Hugs and remember you are not alone..

[Holly G.]

Thanks Julie and Ronda...this can be so overwhelming sometimes....well, all the time. I'm doing a little better today and I have an appointment tomorrow where I can finally discuss treatment plans.

Julie, I need to order one of your books.

[musiclover]

My symptoms are the same as yours - frequency and irritation but not a lot of food triggers although I'm on the diet strictly. You should start some meds. Elavil and hydroxyzine help a little but I just started recently so hopefully they will kick in more. Try a Benadryl, it might help a little bit.

[Holly G.]

Hi Musiclover,

I am having a better day today and I'll see my doctor tomorrow, so I'm sure I'll be put on something to get the ball rolling. As of two weeks ago (or so) I started noticing that food WAS triggering flares.
Small ones, only lasting hours or so.

Good thing you are on the diet, I hadn't been and I'm sure I've been doing all sorts of damage the last few years...I'm a huge fan of spicy, hot food and everything on the no-no list. I am trying not to think about food any more, I would much rather feel better now : )

thanks for writing back!!

[ellenjb]

Im so sorry you're having such a hard time. A thought....do you have seasonal allergies, b/c I do, and my IC always flares up in the fall...just a thought. I hope you feel better soon. Hang in there!

[VickiB]

During a flare I often find I am better in the morning and get progressively worse through the day. By the time I get to bed I feel it the most. I wonder if it's caused by the accumulation of all the movement from the day, bending, lifting, walking, etc? Plus a build up of stress. And it seems too, once I do settle down trying to relax in the evening the irritation comes to the forefront, unlike most of the day when I was busy with my focus on other things.

I hope your doctor visit goes well tomorrow. Hopefully you'll get started on some sort of treatment plan that will lead to improvement for you. Let us know how it turns out.

Vicki

[Holly G.]

Yes, I feel like mine gets worst later in the evening..or mostly at night. I am still new to this as of the last few weeks. Before that I bacically just had urge and freq. with irritation is I drank coffee or soda.


Thanks everyone for all the input:smile tee

[lisabar36]

Hi Holly. You mentioned your symptoms are getting worse and recently you had a few instills? I wonder if that could be irritating your bladder? Of course you would have to talk to your doctor. I know my bladder gets extremely irritated even from a small catheter and it makes my symptoms worse, either that or the med itself. My doc had me stop them for a while and see if I did better and I did. It was just causing me more discomfort. My symptoms are usually worse at night also, but I think that has alot to do with my activity during the day and my PFD and of course what I eat. I am very food sensitive, any little ingredient can set my bladder off and sometimes I don't even realize its what I am eating. I know on the IC list of foods that say usually ok, or may be ok, I can't have some of them. It took me quite a while to figure out what foods bothered me, and I even still notice on some days I can have a certain food and some days that same food will bother me a little. I try and stick with the safe list since I know I am so food sensitive. I hope you start to feel better. I know how frustrating it can be.

[Holly G.]

Hi Lisa,

I had the instills a few weeks ago and then I started feeling bad after the fact, but I did consider that they might be making it worse. I did go and get another one on Thursday, Friday was a bit irritated and then the entire weekend was great, so much better than before. I think they did the instills at a time when my IC was not too aggravated and then it must have just acted up after the fact ????

Thanks for your input : )

[musiclover]

My first instill was the worst and then after that they got easier and easier. Of course, the first time they used some cleaning agent that stung, but I've had three now and the most recent one was pretty easy. I have another in two days and I'm not scared at all any more.