Newly Diagnosed

**Adunephel** · 09-27-2004, 11:21 AM

Hi, my name is Jessica

I had the cytoscopy and hydro distension a couple of weeks ago, which confirmed IC. I got to see pics of my bladder...which I suppose is interesting.

I never even heard of this until my Gynocologist mentioned it a few months ago. He recommended I find a specialist and read up on IC online.

The Dr is finally made an appointment with I found on this website. I am really glad the website has a physician listing, the Dr I found from here has been really great.

He discussed the illness with me and is going to have me see a dietician. I really enjoy healthy food, but most of the healthy food I like is on the BAD list. He gave me the diagnoses and I was sobbing quietly about tomatoes

so um, yeah anesthia does funny things to me.

I have my post op follow up in four weeks.

**Adunephel** · 09-27-2004, 11:24 AM

Thought I would add, since I did speak positively about my Dr that he is Thomas Greibling here in Kansas City. If you live in my area, he has been really nice and I would recommend him.

***Sarojini*** · 09-27-2004, 11:45 AM

to the ICN!!

I'm so sorry you've been diagnosed with IC, but I'm glad you have a doctor who you like -- hopefully you can get started on some treatments soon and that you begin to feel better really quickly!!

I'm also glad to see that you're trying to follow the IC Diet ... I know it's REALLY hard, but it does help many people enormously. I too love tomatoes and things like that, so I know what you're going through. For the first few weeks, try to follow the diet to the letter, and when you see how your symptoms improve you'll probably feel better about the whole thing. You can then start adding things back, one at a time, to see what you can tolerate and what you cannot.

There is also a little something called Prelief -- this is available in the antacid aisle of most grocery and drugstores (I think its website is http://www.prelief.com too). You can take this with acidic foods and it helps neutralize the acid in what you eat, thereby lessening the chances it will affect your bladder. I find it really helps a lot, and I can even eat a little tomato sometimes if I take Prelief first!

If you haven't already, check out our Patient Handbook at http://www.ic-network.com/handbook. It has a lot of information on various treatments, and also a lot of self-help strategies you can use at home to help yourself feel better. In addition, I recommend the book The Interstitial Cystitis Survival Guide by Dr. Robert Moldwin. You can order this in the ICN Shop (http://www.ic-network.com/shop) or at places like Amazon.com... or your local library may have a copy you can take out for free!

Sending hugs

**Adunephel** · 09-27-2004, 11:52 AM

Thanks! I will check out the info you provided.

I am trying to stick to the diet, it is very tough though. I am sure you have all been through this before and know what I mean about how frustrating it can be.

Going to restraunts is just confusing as heck! Are there any recommendations as far as eating at restraunts goes? Or perhaps some sort of guide for that?

**Dixiefireball** · 09-27-2004, 12:07 PM

and

to the ICN family i'm so glad you found us and have been reading up i look forward to seeing more post from you
sending you hugs nad prayers
Rhonda

**kelly McC** · 09-27-2004, 12:13 PM

Hi and welcome to the ICN,
Sorry you have IC but glad you found us. Good to hear you have a great doctor.
The diet can be frustrating but it has helped many. I loved sauce that was the hardest for me. I dont miss it anymore I just picture what it will do to my bladder and it takes care of the craving. Good luck with your treatment,
Kelly

**Katrina** · 09-27-2004, 05:19 PM

to the ICN!
I am glad you found us! Please keep in touch and come to us anytime we can help you!

***SharonA*** · 09-28-2004, 03:37 AM

I am so sorry that you have IC but so glad you found us. Please read everything you can about IC. It is so very important to be an informed member of your own health team.

As far a going out to eat... I read menus like they are a short stories. Also, it may be embarrassing at first but learn to be very specific about your diet restrictions with the waiters. Tell them what you cannot eat and ask if they can make any recommendations based on that information. If they do not know if any offending ingredients are in any of the food, ask them to go to the chef and ask. Sometimes, the chef will even come to your table to speak with you personally. They are in the business of making the costumer happy. I have even had local restaurants go so far as to create a dish just for me so I could enjoy a meal with friends. They want your repeat business and want you to spread the word about what great service you received from them.

**tigger_gal** · 09-28-2004, 04:27 AM

Glad you found us.. You will find a weath of info on these pages..... and NEVER ENDING SUPPORT I put that in bold... because, these gals are really supporting me thru a rough time right now...not to mention its true

there the best....
hugs
Brat

**ICLori** · 09-28-2004, 05:16 AM

Welcome! I'm sorry you have IC, but glad you are here on the boards because you will learn so much here that will help you, and people are really nice here!

It might take time, with the diet and other medications your doctor might want you to try, before you are comfortable again, but please don't give up hope - be patient - it is just a matter of time before you will be feeling good again!

Blessings, Lori

**VickiB** · 09-28-2004, 11:30 AM

Hi Jessica, and welcome!

When I go to a restaurant I always take Prelief first. I hate to sound negative, but I just don't trust my bladder in the hands of someone else! I've worked in enough eating establishments to know that often times even the chef's don't exactly know what's in the dish they're preparing. My motto is better safe than sorry!

Vicki