DeVisualise Add Fave Search
Not Logged In
0
Your Username:
Your Password:

[ sign up | recover ]

Love is all you need 's Diary
by Love is all you need

previous entry: PLEASE HELP ME REMEMBER THIS BOOK

next entry: future ramble ramble..mamble....camble?

IC- Intersticial Cystitis

08/08/2011

SO, I've recently discovered something lovely. For a few years now I have been having tremendous pain in my lower region and couldn't figure out why. Went to...I don't even remember how many doctors and took over a million different tests, until FINALLY, one came through. Intersticial Cystitis is a genetic disorder where the inner lining of you bladder stops producing itself and your urine starts to eat away at your bladder cells. This being because of all the acid in your urine, and what causes all the acid in your urine? The food you eat and drink. So now I am on a ridiculously strict diet where I basically eat misery and water. Its crazy the things I can't have. NO fruit except for watermelon, pears, and blueberries. Absolutely nothing with acid in it. NOTHING, nada, and a couple of other things like wheat bread and yogurt, which I don't understand. I know people have many diseases and disorders that are much worse, so I really shouldn't be complaining. Its just it makes me so stressed out all the time and now the medicine I'm on makes me so tired and weak feeling all the time. I'm getting bruises everywhere, I get night sweats, and if I do eat anything forbidden, I get such awful pains that it makes me not want to eat anymore. Aside from all that, I can't do anything, I can't get a job, I can't go to school. I want to contribute to my family or at least help out in some way but I'm just so tired all the time...just all the time and I can't help it. Anyways...the only reason I'm telling you this...whoever you are reading this...is to see if there's someone out there I can talk to. I feel so alone and no one understands what a bitch this can be. My family is supportive..well for the most part, my dad and step mom wont leave me alone about the job or school thing, but I need to talk to someone, anyone who gets what I'm talking about. I just feel so...pathetic for being sick. I know I can't help it, but it feels like it is my fault..

previous entry: PLEASE HELP ME REMEMBER THIS BOOK

next entry: future ramble ramble..mamble....camble?

0 likes, 1 comment

[ | add comment ]

Add Comment

Add Comment

Please enter the following WHITE digits in the box below.
Confirmation Code

Hi random noter: I saw you on the front page. I have interstitial cystitis too. I developed it when I was in my early 20's and was officially diagnosed shortly afterward. It was pretty bad while I was in college. I was in terrible pain, couldn't eat anything, couldn't sleep, and it seemed I was always at the urologist.

I seriously remember wondering how I was going to be able to do anything in life because I was in so much pain I couldn't really function. I felt pretty helpless at times.

But don't give up hope. For whatever reason four years ago my IC went into "remission" ( if you can call it that since it can come back at any time) and minus a few flare ups during pregnancy ( and they weren't that bad) I have remained symptom free and med free for the most part. Stress and hormones seem to be my biggest triggers. I was on birth control pills to regulate my cycles and we discovered that any kind of hormonal birth control made my IC go crazy. As soon as I went off of them I started to feel better. I had to avoid tomato and oranges and anything acidic for years but I can eat them all now with no problems.

I took elmiron and urelle fortunately responded well to both of them but I currently don't take anything. Two tricks that I found to be lifesavers (and still use if my bladder is feeling off)
1) baking soda and water. If you are having a bad flare try a teaspoon of baking soda with a glass of water. Hold your nose- it tastes disgusting but it works wonders. It will really calm down the acidity/burning sensation in your bladder within a few minutes. This works great if you accidentally eat something you aren't supposed to.

2) Prelief. The anti acid section of most pharmacies ( I have the most luck at Walgreens) for prelief. It's made by the same people who make beano. It takes a lot of the acidity out of foods. A lot of people with IC have found that it really helps when you take it with meals.

I know how hard IC can be. If you need anyone to talk to who has been through this or have any questions please don't hesitate to send them my way. Please know that you aren't alone.

[littleoldmeStar|0 likes] [|reply]

Online Friends
Offline Friends