Hi Everyone!! I am joing the long winding road with all of you! - Interstitial Cystitis Network Support Forum

anitadenise · 02-07-2007, 03:29 AM

My name is Anita from New Hampshire and I know I IC. I have been waiting months to see a Uriologist. I have an appointment Monday. After spending alot of time on this web site. I now realize I have had this for years...........I thought it was just the way it was getting up 6 to 8 times a night. If I was out the first thing I had to do was know where the restrooms were located. If I thought there was no restroom I wouldn't go to the event. The pain would be awful if I couldn't find a bathroom IMEDIATELY i would cry with pain. I think my family thought I was foolish.I am so happy I am not alone. Lots of UTI's and Yeast Infections. Everything came to ahead December 13th. the pain is unbearable.I can't sit, I don't leave my house. I feel like ....hopeless until I started around this web site. I feel like I have sisters that I am very close to becuase what you type is me. I sit and cry while reading this becuase I know I am not crazy that this is real. When the Doctors tell me its not an infection I know it is something, I know it is IC soon i will have to stand up so I have to end this section soon the pain get terrible when i sit. While looking around I can't seem to see this diet....will somebody idiot proof this for me and send me the link or URL

***leelee88*** · 02-07-2007, 03:48 AM

...Just wanted to say welcome and let you know your not alone..

If you look at the top of the page, you will see the patient handbook..
It has a lot of info that will help you, In the meantime if you have any questions just let us know...

***leelee88*** · 02-07-2007, 03:50 AM

This might help you find it...

http://www.ic-network.com/handbook/

humpieumpumkin · 02-07-2007, 04:35 AM

Hey Anita im from Southern Maine! Its nice to meet you! Your at a great place now.

Erika

***Sarojini*** · 02-07-2007, 05:17 AM

I am originally from Massachusetts... nice to have another New Englander on the board

The handbook link provided has a section on Diet, just scroll through in there until you find that section. I hope going on it can help you until you see your urologist for diagnosis and treatment...

tigger_gal · 02-07-2007, 05:20 AM

you will find awealth of info here, and a ton of support

Trishann · 02-07-2007, 05:45 AM

Anitadenise, you are not crazy at all. I am happy to that you found this place. It is a great comfort to know that people understand and that you are not alone in struggling with it. People here can hear your cries and can help you through this. Learning from each other all the time and learning to stand by words of comfort or help.

Trish

anitadenise · 02-07-2007, 05:52 AM

Thank you so much for your welcomes and supports in record time.
I did find the do's and don't list of the food so just stay in the yellow and I should be ok. i have vulva pain. Should I do anything different? Hi Erika, I am in Exeter! I have ordered Three books from this site.
Here's a question. I went out and found those Natracare pads....With in two days I got a yeast infection has anyone heard of that?? Does anyone reccommend any different?
Thanks again Everyone
Anita

SandyRN · 02-07-2007, 06:01 AM

Anita,

the board...we're glad to have you aboard! You may want to check out the diet section on this message board. There are lots of helpful tips and recipes there that really do taste great! This is a great place to come for help and answers as there are many kind and giving people here. I'm sorry that you're feeling so bad right now. Good luck with your appointment on Monday! Let us know how it goes.

Hugs, Sandy

Annie2 · 02-07-2007, 07:51 AM

Just want to chime in and give you another

So glad you found us! You are not alone in this! We're all here to help one another. We know exactly how you feel finding a group of people who really know and understand what you are going through. I. too, sat in front of the computer and cried when I found this site. Speaking of sitting.......there is a great seat cushion available here in the ICN Shop that many of us use. It really makes sitting a lot more comfortable for us. You might want to check it out. The ICN Shop is full of helpful items.

Glad you found the diet. The majority of us find that by carefully following it, we can greatly reduce our symptoms. It's really hard giving up so much, but we do it because it works. Once you see your doctor and find meds or treatments that work for you, it's very likely you will be able to expand your diet quite a bit. It takes time to discover your own personal food triggers and tolerances, but it's well worth the effort.

Anita, I am an adopted New Hampshirite. My hubby was born in Meredith, raised in the Lakes Region and much of his family is still there. Now that we are retired, we spend summers in NH (Lake Winnipesaukee).

Glad you finally will see a uro soon. There are some good uros out there that are very IC knowledgeable. I hope you find your new uro to be a great one and that they will provide you with the care and compassion you deserve! The knowledge you have gained here and by reading our handbook will really help you discuss this situation with your doc. I even found a good uro willing to provide care for me just during the summers while we are in NH. This past summer my hubby became critically ill and spent two weeks in the hospital. My NH uro has a WONDERFUL P.A. who heard my hubby was very sick (word gets around fast in small towns) and actually stopped by my hubby's hospital room to see him and check on me to make sure I wasn't flaring or needed her help because of the stress of my husband's being so ill (stress can really have quite an effect on our bladders). I about fell over with surprise when she walked in the door! There really are good and caring health care providers out there and you don't have to be in a huge city to find one.

I look forward to hearing more from you here. Please let us all know how your appointment Monday goes. We all understand and care very much! You'll find this is a wonderful site full of important information and very caring and supportive fellow ICers. Welcome to the family!

mellusk · 02-07-2007, 11:01 AM

Hey,
If you're going to see a uro on Monday, it might be a good idea to make some charts of exactly where your pain, when it's at it's worst, and where it hurts the most. Maybe you should print out some things from this site too, because if you read long enough you'll find ample examples of uros who know next to nothing about IC. If by chance you wind up seeing someone who isn't well versed on the subject, he or she may not diagnose you properly, and the last thing you'd need now is someone else telling you that it's all in your head. The more information you have, the better you can help this person treat you. Good luck!

anitadenise · 02-07-2007, 01:40 PM

You are right about a diary or log. I was seen in the emergency room.....i thought i was dying!!!! A nurse said to me to go online and look up IC and the next thing she said is keep a detailed log of pain , meds, ect...I am armed with a ultrasound and 4 urines. 1 that was positive and three that had no growth .. One thing I am confused on. After you eat something how long before we can tell that it bugs the bladder is it an hour?? Today I was strict on what I ate. I followed the yellow ok list. I am not suffering as bad as last night. I did go in the car to Walmart 6 miles away and I thought i was going to cry it hurt so much.

Annie2 · 02-07-2007, 02:46 PM

The amount of time it takes for something we've consumed to irritate our bladder can vary from person to person and is different with various foods. Many find drinks produce the fastest reaction....anywhere from 20 minutes to a couple of hours. Solid foods you may react to quickly but sometimes the reaction isn't until 24 hrs or more later. By following the diet, you may notice some improvement right away, but it may take 2-3 weeks of carefully following it before you see the full benefits. The reason it takes so long at first is because your bladder is very inflammed and irritated right now. By following the diet, you give your bladder a soothing environment in which it can start to heal and the inflammation can be reduced. That doesn't happen overnight. It takes time for all the irritating foods you were eating to be eliminated and the inflammation in the bladder to go down.

Though you are eating only foods that are in the "Usually OK" column, do remember you need to constantly read labels. For example, white bread is listed in that column, but not all white breads are alike and safe for us. Many contain preservatives, B vitamins which can irritate sensitive bladders, soy flour (acidic and very irritating to some of us), etc. Until you know the diet by heart and no longer need a reminder, it's a good idea to carry that diet list with you when you shop. As you read labels, compare them to the list and if you find an ingredient listed in the "Maybe" or "Usually a Problem" list, you will want to avoid that product, at least until later when you learn what your own bladder will tolerate and what irritates it. Homemade where you control every ingredient that goes into food is usually best, especially in the beginning. But you can't spend your whole life cooking safe foods, either, so get in the habit of reading those labels carefully.

Yep, riding in cars with all the road and engine vibrations can be pretty darned difficult! Have you tried using heat or cold packs? Many of us find they help us tremendously. Some prefer heat and others do better with cold. I'm a heat person and have a close attachment to my heating pad. You kinda have to try both to see which is best for you. When riding in a car, using those stick on heating pads availabe in stores (Bodi Heat, Therma Care---and such brands) can be very soothing. If cold works better for you, try riding with an ice pack or even a cold drink bottle. The ICN Shop sells great cushions designed for ICers and many find sitting on one helps when riding in the car. I also found sitting on a thick memory foam pillow helped tremendously. Memory foam is very dense and absorbs a lot of the irritating vibrations.

Sounds like you are armed with lots of info to give your doctor Monday. Also, be sure and tell him you are following the IC diet and whether or not you think it is helping you yet. Knowing how you are responding to the diet is important info for the doctor to have when diagnosing you.

Hope all goes well on Monday, that your bladder responds quickly to following the diet and that you soon start feeling some relief!

anitadenise · 02-08-2007, 12:34 AM

Thank you so much for all the information! Yesterday i followed the IC diet to the letter and I didn't need pain meds all day just Motrin. Usually within an hour after dinner I would be in agony. I will do it again today and see what happens. Maybe it was just a good day. I was up six times last night between 11 and 6 am i am so tired.I would love to sllep maybe 4 hours straight would be a luxury. i will buy a memory foam (like a pillow) for the car. The Doctor is an hour away on Monday so she should see me at my worst. Do you think she will do anything Monday?
Anita

mary124 · 02-08-2007, 04:35 AM

Welcome to the board. Sorry you have IC. But you've come to the right place. I won't give you any advice as everyone has given you great advice as is. Let us know how your doctor appointment goes. Good luck.