How do you cope. (post moved for new member Toolally)

[Dixiefireball]

Today, 03:53 PM #11
toolally
Registered User


Join Date: Jul 2006
Posts: 3 How do you all cope?

--------------------------------------------------------------------------------

I am in the limbo stage of being diagnosed. I am in pain every day with pressure, burning, just a general feeling of being uncomfortable and unwell, I have had a flexible cystoscopy and the uro said the likely diagnosis will be IC but I now have to wait for the next procedure which he said was a scraping of the bladder wall under general which may give me some relief, and they will also do a biopsy, I also have to have a ct scan, is all this normal? I really feel lost and reading all your stories makes me feel how do you all cope every day, I have only had this problem since April although I have had undiagnosed abdominal pain for over ten years, I have had 2 laproscopies and all they could come up with then was IBS although now my doctor is saying the problem all along could have been with my bladder. I also get a lot of pain and a sort of stiffness in my groin - especially on the right side, does anyone else have this?
I have also been looking into the IC diet but don't know where to start and also feel a bit half-hearted about doing it until I get a firm diagnosis - if it is not IC I really don't know what is wrong with me as I can really identify with so much of what you people talk about.
Hope someone can help me to understand what I am up against!

[Dixiefireball]

Hi and welcome to the ICN I'm sorry you may have IC, but I would really recommend you trying the IC diet you can find that and lots of other helpful advice at www.ic-network.com/handbook. The IC diet should help a lot of your pain your feeling. You will never know until you try it? it can cut down on urg/freg, and some of the pain if not all of it.
if you feel you have pain from something you ate or drank ed you can try taking tums reg fav. or drinking water eight oz glass with a tsp of baking soda. drink fast its nasty! prelief if you can find it helps a lot too. You can buy that i believe in the ICN shop. if not you can get it straight from the prelief site its self. some stores Carry's it also.
heating pads, or ice packs help in some cases too.

sounds like you may be having a hydro/c. when your Dr goes into your bladder he will be able to tell you if you have hunner ulcers (honestly not trying to scare you but it really sounds like to me you may have one on that right side. I'm not No Dr. or No RN what so ever just a patient who has hunners.
Your Dr. can remove them while he is in their doing the surgery or you can try the treatments to see if that helps.

I wish you all the best. please keep us up today on how your doing we are here for you.

Also remember those who are in remission doesn't post as much some don't post at all. Many of us are in remission or at least has had some sort of remission at one time or another.

sending you hugs and prayers
Rhonda

I know a lot of what you are going threw is overwhelming, but remember their is remission out their it all has to do with finding what med will work right for you.

[SharonA]

Rhonda said it all, already. I will just add my :welcome: to the ICN.

[toolally]

Thanks all for replying, I amstill trying to get to grips with working this forum out but once i do I am sure I will be on it 24/7. Can someone tell me in plain english how I post a new thread - I did see it somewhere but cannot find it now.
Thanx a lot!!

[Katrina]

:welcome: to the ICN!
The diagnosis of IC is a process of illimination. Many other things have to be ruled out first.
IBS is very common with IC patients.

Is your burning constant? Or is it with urination?
In my experience if all of your symptoms were from IBS you would have more pain on the left than on the right.

I recommend starting the diet now! It can help confirm a diagnosis of IC and is the best treatment we have.


Yes....people with IC can have pain that is worse on the right side especially if they have hunners ulcers.

As far as coping, things get better with time.
http://www.remedyfind.com/newsletters/May_06_IC.html coping with stress and IC
but I now have to wait for the next procedure which he said was a scraping of the bladder wall under general which may give me some relief, that may be hydrodistention cystoscopy as dixie said but if not not sure.
Dixiefireball gave you some great advise!
http://www.mealsforyou.com/cgi-bin/home recipies search place
http://www.ic-network.com/icchef/ online cookbook IC
http://www.icnshop.com/ there are IC friendly things such as alternatives, soaps, foods, books, and many other things. It is a good place to take a look at. Also has Julie's book "Confidnet Choices" which is great on getting started on the IC diet and with IC.
http://www.ic-network.com/forum/showthread.php?t=7562 this is thread of pain relief the second page has attachments I believe the last attachment is the list of pain relief ideas.

http://www.ic-network.com/forum/showthread.php?t=27584 newbie kit moved to newbie board from the oldies to the newbies

If I can help you anymore let me know! Things do get better!!!!!
:grouphug:

[Dixiefireball]

toolally,
Go the the subject you want to post in. On the main message board. (the board you sign into when you come in.)
then once you click on that subject its up in the right hand counter you should see (new topic) click that and a new page will come up you then type in your topic and what ever you need to. Once you finish that you will see submit new post at the bottom click that and it should start a new post for you.
I hope this explains it simple enough so you have no trouble.
Good Luck if you have any problems let me know you can pm me by clicking on my name.

sending you hugs and prayers
Rhonda

[IC SARAH-CPP]

Welcome to the group.
I agree with the other ladies in that you should try the diet right now b/c it may help your pain and urgency. I know that when I cut out coffee and the very small amount of alcohol I was drinking, it really helped me so much. I didnt have a firm diagnosis yet then either but I was willing to try anything to help the pain and urgency. I couldnt make it the 15 mins from my house to work without stopping 2 times! It was awful.
I think that the stage you are in right now is the most overwhelming and confusing. At least it was for me. I felt like I just couldnt make it through this and couldnt imagine living the rest of my life like this. Things DO calm down though and you learn how to deal with this. There are wonderful examples on this board of ladies who live their lives almost symptom free. I know Donna is always a great example for me, of hope and something to look forward to.
Another thing that REALLY helps me is to think where they could be in medicine in 20 years. Look how far they have come in the last 20 years, who knows where we will be in the next 20 years. They could come up with a cure for IC! We can hope, cant we?
Look around the board, post to us and read whatever you can. You can do this and we will be right beside you!
Love Sarah

[JenDan]

I just wanted to say hi and welccome to the board. I also want to let you know I also felt like you about 3 months ago. If it is IC you have to know it is not the end of the world and remission is real and happens often. I thought it was here to stay w/ me for the remainder but I will say for the last 3 wks I have been great and thank God everyday I feel like my old-self. I am on alert waiting for it to return and it's just something you learn to deal w/ but it takes time. Read up on the DIET it can't be stressed enough and you can start right now.......I started the diet but also took out all wheat and milk and I felt better within days, being uncomfortable makes it so easy and even if you don't have IC your body will thank you for a better diet and I lost 11 pounds the first month. Good luck and I hope you get an answer whatever your problem turns out to be.

[Dixiefireball]

I just wanted to drop by to see if you where able to start any new threads by yourself? If you are still having problems plz let us know if your still having problems so someone can help you.

xoxox
Rhonda

[JenDan]

Toolally was unable to post replys, I received your thread, Toolally will probably see it. I am to new at this to give directions. "Reply to Thread" is in the upper left hand corner.