Hello everyone. I am new and Happy to be here

[Katie55]

toilet

I guess this is exactly how I feel right now, is being in the Toilet night and day for two weeks now. I first want to say hello to everyone, and to say how very thankfull I am to have found this site. Also to have a computer now so I can be in touch with the world outside of my room which is where I spend most of my time these days. Not only do I suffer with IC for about 15 years now, but also Very painfull Fibromialgia. IBS, several bowel surgerys, and some kind of nerve damage they don't know yet what is the cause. I also spent two months back to back with acute and now cronic Pancrititis. I have a Hernia that needs fixing, and the lists goes on and on. I am soooo sick of being sick and in pain with NO-ONE that understands or to talk to. Everyone in family is pretty much tired of hearing about my pain which I don't blame them. They often tell me it would be better if I had cancer, then at least it would be over with. I go to bed thinking and somtimes lately wishing I did so I didn't bother them anymore. I have lost my husband, and my two daughters because of my illness as they just can't deal with it anymore. And the Drs are pretty much giving up on me to. I wounder why I keep going when it seems as if no-one cares if I do. I am sorry for going off like this being new and all, but I am in soooo much pain I just needed to tell someone.
Thank you all. frown

[auntiedeb]

Hi and welcome to the boards Katie. You will find loads of information. I suggest that you read the patient handbook and try the ic diet and see if that helps you. We are all different with our ic and pain and diets. what medications are you on? Are you on any pain meds for the pain? Please keep posting and let us know how you are doing.

[Alexa]

Hello fellow BC-er! Welcome to the ICN :) I'm in Vancouver, what part of BC are you from?

I can totally understand how you're feeling. The ICN Patient Handbook really helped me when I was first diagnosed, it has a ton of great information on many aspects of dealing with IC. Have you tried the IC diet? I follow it very strictly and it has helped a lot. Are you currently on any treatment or medication?

Take care, Katie55, and welcome again!

:) Alexa

[dyno]

Hi Katie,
Welcome to the ICN. It sounds like you are dealing with a lot both physically and mentally. Don't give up. Just take this a day at a time and know there are people who care on here.

Maybe once you can start feeling better your family will come around. Too many people don't understand what chronic pain and illness do to people. Maybe it would help if they would read some of the stories on here. Good Luck to you. Sending you hugs. grouphug grouphug

Jolene

[ICNDonna]

I'm so glad you found the IC Network. You'll definitely find a lot of support and information here. The Patient Handbook is at http://www.ic-network.com./handbook/ It contains diet information as well as data about treatment options.

I hope one day soon you will find the treatment that works for you.

Warm healing thoughts,
Donna

[vm]

Welcome, Katie! hi

[Iris]

Hi there Katie and welcome to the ICN and the IC family. It certainly shows in your post you are dealing with a lot of pain, and I certainly understand the feeling of continuously being in the bathroom visiting the porcelain king frequently. I am glad you found us, and there are so many good people here who can understand what you are going through. I know that you will find a lot of helpful information, and support here. Take care and keep us posted as to how you are doing, welcoming hugs Iris. hi grouphug

[Katrina]

Hi Katie, really shounds like you have been through a lot and suffered a lot of pain. I believe I am someone who knows a lot what that is like.(((((((((hugs to you))))))))))))) I know what you mean about family not understanding, yet not blamming them....such a mess hardly can believe it yourself....Read my health story...which is missing things since so much wrong hard to remember it all at once here. Feel free to contact me if you need to, (Private Message or email)I have thought myself that cancer would be easier not sure how comfortable I would be with family saying that though, so sorry.

I wish you a lot of relief, and since I am one who sometimes feel the need to talk to the multi diseased because the huge mess is more of a problem than the individual diseases...I would love to be your friend. grouphug

[DebraLeeS]

:grouphug:Katie grouphug
So sorry your going through a hard time :(
This site will help you alot trust me it has helped me more than I can say everyone here is special and make you feel like family.
I hope your New year will be better!
"Happy New Year"

[kiffy313]

Katie,
Hugs and prayers to you...I am so glad you found this site, it has been a "lifesaver" for me. Everyone here is so very supportive, and it helps to be able to have others to talk to who have been there and understand. I ordered the "newly diagnosed" kit from here, and it has been so helpful, if you can order it, I highly recommend it. Please keep us posted on how you are, and know that we care,
Kandy

[Sue]

Welcome to the ICN family !!

[Annieic]

Hi
I am new to this message board. I would like to know how you all can sit at the computer for so long and chat without pain??? I sit for just a few minutes and have to get up.
Any secrets to help... I have an IC cushion and it does not help.

[Iris]

Hi Annie, you asked about sitting for so long at the computer, I try and sit for a while, then I get up and do something else, and then go back. I also have two cushions on the chair in front of my computer, just regular ones I sit on. I have an IC cushion for the car. A lot also depends on how I am feeling that day, sometimes I can sit longer than others. Some of the other gals might have suggestions for you, hope you get some good ideas, take care Iris hi :)

[Silverfox]

Hi Katie

I'm so sorry that you feel so badly. I understand because I have been in such bad pain and pretty much alone with it many years. At one time expert Drs. wanted to take my bladder out, calling it end-stage bladder. After years I learned I had another disease for which I take medication daily. Now I have improved greatly, and for the most part only my close family, my Doctors, and here at ICN have any idea what I have been through.

I'm very curious when you mention that you have nerve damage, where is this? How does it affect you? Is it on both sides of your body? Is it ache or burning or a combination of numbness. I am asking because I also have nerve damage. My Dr. calls it peripheral nerve damage. It caused me to have bowel damage and painful sciatica in my hip and back for years. Recently, after doing some reading on this, I asked my Dr. just where is this nerve damage and he said it is throughout the body. My nerve damage was very severe but the nerves are healing slowly now.

Please share what is your nerve damage like? Perhaps you are like me and I might have information that you can look into. You can post here or send a private message.

The good news is that the medication I am now taking has helped a great deal. I just wanted to share this with you, because I want you to know you are not alone, and that with the help of the good people here you will have the strength to fight this.

Please share with me about the nerve damage, I do pray I can be of help.

Sincerely with love and friendship, Silverfox

[kiffy313]

Hi Annie,
Have to agree with Iris, I sit for a few minutes, usually on the edge of a padded chair, get up and go to the restroom, and come back, or I log off and check in later...Take Care,
Kandy

[Dixiefireball]

hi and welcome to the icn family i'm glad you found us you will find tons and tons of support here we are here for you day or night. I understand your feelings and i'm so sorry you are having to go threw all of this.
if there is anything we can do to help please let us know. grouphug

[Cali girl]

Hi! hi grouphug kissing Everyone here cares about you. This is such an awesome site. There is so much information here. And everyone is so friendly. I hope that they find a treatment that is right for you. Please let us know how you are doing from time to time. Welcome to the ICN family!

Cali :)

[Tami Stambaugh]

Katie,

Sounds like you are have one hell of a time!!! One thing you need to always remember is that your life is valuable to yourself as well as your families. I mean that is pretty drastic for you and them do say it would be easier if she just had cancer----"HOW AWFUL" Most cancer patients die!! I am sure that is not what you or your family wants for you!!! Think of your children----who would raise them???? A mohter is hard to replace. You stop these negative feelings about it would just be easier to die-------that is a cop out-----you are better than that!!!!!!!!! Hold your head up high and always remember that. Maybe you shouldn't dicuss everything to you families, exspecially if they don't uderstand how you are feeling on the inside!!!! Don't let them bring you down but when that does happen you just pick your head up high and continuing living one day at a time just like everyone with the horrible disease does!!!!!!!!!!!! Don't give up and things will turn around for you maybe--Be positive!!!!!!

Tami hat