Help..Crying..Diet..

[karen10300]

Crying- crying -crying. Am I alone or is this somewhat normal after just being diagnosed? I've been crying off and on since Friday. I kept hoping that that my doctor would find somehing else that was cureable when he did the hydrodistention & cystoscopy. But of course that didn't happen. So now here I am with all of you and even though the circumstances aren't what I would ask for, I have a chance to be in touch with some very wonderful and caring people.
I've been reading about the IC diet and am asking for help or advice as to how to start it.Do you eliminate just about everything you eat and start with just a few basics or what? I am in a lot of pain and have been for going on 4 months now, so I don't understand how I will really know what foods flare me when the pain is already so bad. It seems to me that somehow I need to reduce this pain drastically or is this what the beginning of the diet does? Looking for ideas of meals or anything that are considered safe that I can make. Like is macaroni and cheese okay or do I just eat plain noodles? Any ideas or suggestions will be so welcomed. Thanks for your help.

[Dees1977]

Trust me you are not alone. I had my hydro June 1st..my dr told me possible IC..Which I figure it is..I have cried on and off since then..it is very depressing..but there are people on here who do get better. What did your dr give you? What did they find during the hydro? What was your bladder capacity?

[Janie Miranda]

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

karen,
Above is a link to the elimation diet. I went on it and although it is hard to do - it helped me a lot to figure out the foods that bothered me most. I was where you are back in December of 2004 but after staying on the diet strictly and then getting on Elmiron and antihistimines I am doing much better. Most of my days are relatively pain free now (or at least low level tolerable pain). I just wanted to share with you so that you know that there is hope that you'll feel better.
Big hugs,

[cyndbear]

I am so sorry that you are going through a rough time and it is normal to feel the way you do, and most of us with time and support can learn to live with this disease and manage it. Get all the help you can get and remember that this to will pass. Its good to vent because holding it inside makes it worse. I ended up going to a pain clinic and got some counselling centering around living with my disability and the grief process we go through. Hang in there and don't ever give up. Life is a gift and each day holds something new, I really hope you continue to post messages because that was something I never had when I was first told I had I.C. and man you can feel alone.

[Freedom]

Karen-I'm in your boat-diagnosed Friday. Been crying and upset. Wish it was a simple cyst they cut out and I'm all better. To know I have something incurable is reallying aggrevating! I'm a busy homeschooling mom! We have sheep, ducks etc... I used to ride my horse, do cardio 6 days a week and free weights 4 days a week until May 1st. Now I've been in bed almost all day for two weeks!May 1st I really started hurting and within a few weeks became too weak to do the things I enjoy! Aggrevating!

[ICNDonna]

I'll have to admit that I did my share of crying when I was diagnosed and began reading about IC. That was thirty years ago and I have since learned that there is life with IC. It may take a while to find which foods and drinks are a problem and which treatment options work best, but most of us do --- and most of us lead full lives.

Sending warm healing thoughts,
Donna

[Julie B]

Karen:

You might want to ask some questions on the Diet and IC board. You can also do a search there to find out specific questions. Most of the time people eat a restricted diet at first, but then they can add more foods as they feel better. I felt like that too......crying at night especially and laying on the bathroom floor even. After awhile, I felt much much better..........Diet helps as does getting on the right medications for you.

The other thing I had to do a lot at first is sleep..........as much and whenever I could..........it felt selfish at first, but when you realize that your body does most of its healing when you are asleep, then you have to do it. I napped almost every day for a long time...............but now it is only when I really "need" it..........smiles.........

If you want to download some diaries to use with the IC Food Lists............and a portable copy of the IC Food List (it is the ICN list but in PDF form) you can go to my website: www.NutraConsults.com/CCresources.html

You are right.........the people here are amazing...............and generous with their time and love..............hugssssssssssssssss Julie B

[Tina K]

I was just diagnosed two and a half weeks ago. I have been crying and crying. Very depressed. I was hoping the same thing I guess that it would be over after the surgery and I would be all better and now I am not, trying to do this diet is very hard. I understand.
Good luck and remember you're not alone.
We have to believe it will get better.
Tina

[Freedom]

Hi tina-
well I know being depressed is the worst state to get into as it will just make us worse.
so, contacted a support group in my area from the list on this website. Talking to a wonderful support leader who is going to sit down and talk to my Doctor and help him know about more treatments etc... for this disease. When my ob/gyn identified it he put me on elmiron and said he didn't know what to do for my pain and it could last until 3-4 months until the medicine took effect! Another doctor had put me on napronex until I could find out the problem,which is helping while I'm searching for answers. He said he could stick the camera up my bladder for confirmation,but my bladder and pelvic region are SO inflammed it would be an unnecessary test that would just cause me more pain.So, he wants to know how to help me and others and is going to meet her for lunch! Way cool!

a homeschool friend found out about me and is putting out a call for the ladies to
bring us supper for a spell until I get over this painful mental and physcial hump.
Now just waiting for the doctor to call me back with how he plans to help with the pain
because as you know this stuff hurts and it makes me really weak-as I fight the pain.

I am also doing the diet and it seems to be helping some. I found a site from one of the above posters where we can list our food and pain to find correlations to help us...I'm gonna print and start keeping that filled out too.

This IC stuff might have smacked an active person in bed, but I'm NOT gonna
let it win without a battle! :headbang:

[Katrina]

Flares can be because of many things and diet us all in a lot of ways. Julie has a lot of great ideas to help someone get started with IC....Wish I had it when I was newly diagnosed. ONe thing that makes many of us struggle is that we end up having more than IC...Something like IBS can be bothering our bladder everytime it flares making odd foods effect us too. Good luck!

• Flares may be because of: stress, food, food allergies, certain vitamins, nasal allergies, fumes, over working yourself, exercising wrongly or too much, sex, gas, hormones, yeast infections, bacterial infections, smoking, car rides, viruses or being sick, being over tired, treatments affecting you badly, test affecting you badly, surgeries, baths of more than just water, temperature or weather changes, diarrhea or constipation, hunger or over eating, and many other things

[KristaM]

Hi there,
The first thing I did before eliminating certain foods was to sit down and look at my habits over the years. I have always been a person that did not drink water or any liquids for that matter. My mother would call me a camel. I just wasn't interested in fluids and never felt thirsty. I'm sure it is because of this that I developed Ic in the first place. So, the first thing I did was to eliminate Caffeine completely and then I started drinking only water. This helped me SO MUCH! It was really hard but helped a lot. I find that If I keep up with my water that is the best thing I could do. However, my symptoms are burning and frequency.. The frequency got better after my hydro but the burning is still there. Especially if I don't drink enough water. Good luck and it may only be a few things that bother you. Do you drink Coffee or Tea? Just eliminating those may help a lot.
Krista

[karen10300]

Talk about what I Use to drink. It was Diet Coke from the minute I got up until I went to bed. Sometimes there were some alcoholic drinks thrown in there if we went out for the evening. So I'm sure I never did my bladder any favors because water was never anything that passed my lips except maybe as an ice cube in a drink. I wonder a lot now if I ruined my bladder because of this. Now all I drink is water. Talk about a really big adjustment for me. It was almost like going through a withdrawal from the pop. Eventually I will try the pop again and see if it causes a flare for me but right now I need to put out that fire that is burning in my bladder. Does anyone know much about Artesan Spring water that you can buy in gallon jugs? I was wondering if that is an option to try since I can buy that so much cheaper that the smaller bottles of water.

[Tina K]

I am with you on that one. I feel like I need re-hab for coca cola!! I was just wondering to myself the other day if drinking so much soda and coffee over the years is what wore away my bladder lining??? We will never know I suppose. I know that it does me harm and I know I will be in pain but it is still so hard to quit.
I will get there!
I am now on Elmiron and hope that it will heal the damage that has been done.