Unconfirmed Diagnosis - the unending wait

[Sedna]

Hi folks,
I've been visiting this website and these forums for a couple of months now and you should all know that the information and support herein is wonderful.

I live in a somewhat isolated community and the urologist visits once every 4 months or so. I got an unconfirmed diagnosis of IC from my NP approximately 2 months ago and there's been no end to the confusion and frustration since.

I won't be able to see a urologist to confirm this diagnosis and actually talk to someone who would potentially have answers to my questions until December. I've had symptoms (flares, you seem to call them) for a year now.

When I do see the urologist, what is she going to do to me? I've had a pelvic exam, more urine tests than I can count and a blood test. Doctors terrify me; all of them.

Is the urologist going to provide proof of this condition? Will she do a test and say "hey, look at that right there. You do have ic." I'm not sure I can stick to a diet without proof... I just don't have the willpower ;) No coffee, chocolate, fruit, wine... nevermind the extra pressure to quit smoking.

Also, do you find that you suffer flares when you're sick as well? As in with the flu or whatever cold is going around. I was starting to think the restricted diet was actually working until this past week or so.. I have come down with a cold.

And the final question that has been haunting me for these past months. When I received this diagnosis and began studying the food lists and my own diet, I discovered that my diet was EXTREMELY consistent. This makes sense as I'm quite a picky eater. As an adult able to choose for myself what I eat, this fact hasn't been pointed out as often as when I was a child and forced to swallow peas whole to be polite at a dinner table; I think I had somewhat forgotten. Here's the question part, if my diet's so consistent why did the symptoms come and go? Why didn't I suffer constant symptoms? This doesn't make sense to me.

Thanks for listening... I just couldn't wait another two months to find some answers.

:hi:

[VickiB]

Wow, I like to think I live in the middle of no-where, but it sure sounds like you've got me beat!

Urologists seem to have thier own 'ways' so it's hard to say what yours will choose to do next. But yes, there are tests that are used in diagnosing IC, -a cystoscopy with hydrodistension, or Potassium Sensitivity Test seem most common. Some doctors do diagnose on history & symptoms.

I was never in the position of trying the diet for what might be, as I didn't learn of the diet until after diagnosis. I did find it makes a huge difference for me pain-wise so there's lots of incentive for me to stick to it.

Yes, being sick with the flu can set off a flare. Like the flu isn't enough? Also, I learned the hard way that many of the OTC products to help with flu symptoms are not IC friendly.

I'm not sure why flares would come & go if your diet is extremely consistant. When I was new to IC & diet, someone suggested I keep a food diary, which in the end turned out to be very helpful. Besides keeping track of everything I ate & drank, I also listed how I felt. If there is a food relationship to how you're feeling it might be easier to see on paper.

I hope you can soon find answers to what's going on. Not knowing why is a very hard position to be in!

Welcome to ICN!

Vicki

[ICNDonna]

One thing I suggest you try is to follow the diet for a specific time period, perhaps one month. During that time it could also help to keep that diary, recording everything that goes in your mouth, activities, and symptoms. If you feel better, you may find out that diet does have an effect on how you feel.

And --- smoking is a known bladder irritant --- maybe if you thought about it as stopping smoking for just a few weeks???? Smoking also multiplies the potential for bladder cancer, lung cancer, heart failure, emphysema, etc., so your bladder wouldn't be the only thing to benefit.

Sending warm :welcome: hugs,
Donna

[Sedna]

Thanks Vicki and Donna!

I did keep a detailed log for approximately 4 weeks starting at the new diet. It tracked my improvement nicely for a while then I reached a point where there were no changes so I stopped the detailed tracking as I felt any changes or introductions to my diet would be easy to remember from that point on. As you probably know the diet was overwhelming at first and I didn't think I'd ever be able to remember it all. I'm more used to it now.

Is it true that some things will react with you instantly and some take time to cause symptoms? This seems to be trouble for me as I have a hard time keeping the introductions to my diet in check. I'll add one item and be fine for a week then eat something random (not in my regular menu before or after diet restrictions), have a reaction and not know if it was the regular item (for example tomato based pasta sauce) or the odd item (a banana).

Did that make sense? By the way I started by cutting out the IC top 5 which thanks to the tomato effectively deleted my regular diet.

How bad is ketchup and BBQ sauce?

[ICNDonna]

Many, if not most, ICers have a problem with anything containing tomato. Lots of us can have an occasional banana, however.

I was sensitive to tomato anyway because of my IC, but I also developed an allergy to tomatoes so they don't tempt me at all. My IC was diagnosed 31 years ago and the tomato allergy erupted in about 1985 --- I haven't had anything containing tomato since then. The horrible, burning, itching rash I got from them made it not worth it to cheat on the IC diet!

Donna

[Sarojini]

You've gotten some great advice already here. As for the unanswered, why symptoms come and go, I have a theory as a scientist, and that is this: Your immune system has two parts -- one that causes inflammation to get rid of things it considers "foreign" and one that reigns in the first part so it doesn't get outta hand. Basically, I believe ICers like myself who have periods of relapsing-remitting symptoms may be experiencing the "fight" between these two branches of the immune system first-hand. Sometimes the inflammatory part is winning (you have symptoms) and sometimes the regulatory part is winning (you don't).

This is much like a theory of multiple sclerosis, as symptoms in that disease relapse and remit. This is NOT to say IC is autoimmune, as MS is, but it may have a similar "fight it out" component.

Make sense? :)

Just wanted to welcome you, geeze, and I write this scientific treatise :lmao: LOL

:welcome:

[Trishann]

Doctor are different and they will ask you question, so it is a good idea to keep up with the log update. Usually you will be ask how many times you urinate, do you get up at night to urinate, do you hurt and when. On the scale 1-10 what is your pain. Just personally things like that. So if you are in pain or urinating alot or doing something that is causing more pain, write it down.

Hugs, Trishann

[L. Thomas]

My uro did an regular well woman physical, intake interview (history checklist) and symptoms profile survey. He talked to me for about an hour about my responses and previous diagnosis. He explained his agreement with the 2 other diagnosis but based on my interview he thought I would respond to IC treatment. I did.
________
CandyCox (http://www.girlcamfriend.com/cam/CandyCox/)

[VickiB]

I definitely found that in my case, certain things I ingest take longer than others to come back to bite me. Generally, anywhere from one hour to two days. My theory is that some foods are processed in my body and end up in my bladder much quicker than others. This did make it hard to recognize exactly what food was the problem, and is where I found referring back to my food diary the most helpful.

While I hate to complicate this further, another thing I learned is that many things I can get away with in small amounts. But larger portions, or repeated samples throughout a day will cause a flare. This seems to happen as well if I combine too many small amounts of problem foods. -Another place where that food diary is handy.

For me, both ketchup and BBQ sauce are killers. A double whammy, as it's not only the tomato but also the vinegar!

Vicki

[Trishann]

Vicki, that is also true with me about the small and large portion. I can eat some things in small portion, but not in the large portion.

Hugs, Trishann

[Sedna]

Thank-you Sarojini!
I've been trying to make sense of this just from my own understanding of the human body (minimal) and my own understanding of my own body (extreme) and just wasn't satisfied with any of my own theories. That does make sense.

Perhaps I need to focus a little more on things outside my diet as well. Other things that effect my physical "strength". This is a good reason to restart with the log. For example, this is the first time in many weeks that I've been truly uncomfortable and I have caught a cold that's going around. Maybe it is just a mix of my imperfect ic diet and my body being busy dealing with other problems.

The worst symptoms I've ever had were just after the unconfirmed diagnosis and I believe that was very stress related. I, like most, freaked out with this diagnosis.

And thanks everyone else too!
Looks like I'd better brush away the laziness and start keeping track again. From reading various bits of this website I've figured out that if ic is indeed what I have, I seem to have a fairly mild case of it. (not that you can convince me of that at 3am after 3 nights without sleep and in inconsolable pain)

I haven't actually had any ketchup or BBQ sauce since the diagnosis... and no chocolate. I was just hoping :) I have been toying with the moderation theory. If my case is mild perhaps some of the bad things in moderation won't bother me. I used to eat pasta with tomato sauce 3 or 4 times a week, now I don't let myself have pasta more than once in a week and if I eat pasta I allow no other tomato based dishes. It seemed to have been working and it meant that once a week I could eat something I actually enjoyed which was doing wonders for my sanity.

In the same area, I used to drink 3 - 5 cups of coffee in a day (and I wonder why my bladder is giving out, hehe), now I have one cup of decaf in the morning. Again... wonders for my sanity!

Anyway, thanks again everyone. I'm so glad I finally signed onto this message board.