Just found out!

[aupell]

Hi Everyone,:help:
My name is Amanda; I’m 29 yrs. and I live in FL. I was just diagnosed with IC after 5 years of horrible pain. I was so sad after finding out and then my doctor in Michigan told me about this site. I started reading all the stories and I felt sad for everyone’s pain but I also cried because now I didn’t feel like the only one. I wanted to ask some questions if it’s ok? This is the first time I’ve ever wrote on a site like this.
1. What would help me get through Nursing school I’m all most done and will I be able to work I have a severe case of IC?
2. The Elmiron makes me very sick what else can I take maybe in the bladder?
3. What about SEX? Everything is fine when having sex but then out of no where I feel like I’m going to pee everywhere or on him gross! Does anyone know why or how to stop it?
4. Coffee is my favorite can you drink one cup?
I'm so happy about this site :angel:

[kjd]

Hi Amanda

I can imagine you are feeling very confused, relieved, sad and angry right now! I know it takes some time to take in and you are probably thinking "why me"??!!
Well I can tell you that it does get easier i promise and you will learn different ways to east your symptoms and cope with the pain etc.
As for working, dont give up just yet! I am sure you will still be able to work it just might not be as easy as you first thought. Thousands of women with IC are still able to work so dont give up.
As for the Elmiron there are lots and lots of different medications similar to Elmiron which can help you! Have you tried Amytriptaline? I had to try two different medications until I finally found one which helped. have you spoken to your Urologist about it?
Well the big question, what about Sex!!! Well I wont lie to you there are times I cannot have sex and I did go awhile without it but I now know what I can do and when I can do it! I always drink Bicarbonated soda in a glass of water before hand which helps stop the irratation and that horrible urgency feeling! I also use aloe vera gel which helps ease the burning and lidocane cream on my urethra as I have vulvodyina too (painful vulva)! Yes I know its a lot of a mess around and it would be nice to have normal sex but its not a problem and becomes second nature! make sure you drink lots of water after sex and if you need to go to the loo during sex (which I do) just go as it usually takes the urgency pain away for me!!
As for Coffee I can get away with drinking two cups of decaff aday without any discomfort! However everyone is very different so its difficult to say how it will effect you. I would recomment cutting it out for a few days and drinking water only then introduing coffee to see how it effects you. If you end up in pain then you can guess it was the coffee!
i would recommend looking at the IC info on here and diet tips to learn as much as you can. The other foods I cannot have is anything spicy, wine, onions and fizzy drinks!

If you have any other questions please feel free to email me as you are not alone!
take care

[aupell]

England, thank you that was the fastest response ever hahaha. What’s that drink? Is baking soda the same? That seems to help me. As for a doctor I have one in MI. and I’m meeting another one tomorrow at 1O can’t wait. Also on Feb. 7 I’m meeting with a specialist from the University of Miami. I wanted to ask you do you workout? Looking back I remember my IC not being as bad when I was working out a lot. Well, I’m just glad I finally know what’s wrong you know! Thanks again you rock:smile tee

[kjd]

he he well I dont mess around!!! yes its the same as baking soda, doesnt taste very well but it does help doesnt it!
Well at least you have lots of doctors to see which gives you some hope so make sure you stay very positive.
to be honest I used to work out all the time and go running but this was all before my IC! Now I cant seem to find an exercise I can do which doesnt make my IC worse!! Any suggestions? Its hard as I used to love running but that just gives me terrible cramps!
Yes its such a relief to know what wrong isnt it so I am pleased for you! You will be fine! :-)
x

[SandyRN]

:hi: ! Just wanted to say hi from one nurse to another. I was lucky and didn't have IC or any other health problems when I was in school and managed to go to work on night shift for years before my problems started. I started out with fatigue, not just fatigue from working nights, but overwhelming fatigue that would just consume me. Then the body pain started, and I could not take 8 high risk patients at a time anymore....my body wouldnt let me keep up! I was dx'd with fibro/mps/chronic fatigue, and had to leave my job to go on medical leave before my witchy nurse manager fired me for being out too much.

My IC started later. There are lots of people out there that have IC and work stressful jobs, so there is definately hope. It's the combo of problems that I have that have forced me to quit, at least for now. One day I want to go back because being a nurse is who I am, or at least part of who I am.

Anyway, didnt mean to ramble on, just figured I'd intoduce myself. Babs RN is another nurse on here and she's working full time days now at a doctor's office. Hopefully she'll chime in later to talk to you.

In the meantime you might want to check out the patient handbook, the diet tips, and just read, read, read this board. The links are at the top of the web page.

Theres lots of great people here, and I've learned a lot from this great group of ladies (and men)!

:welcome:

Sandy

[SandyRN]

ps..I drink one cup of coffee every morning because without it I have major headaches and those are worse than the burning I get in my bladder from that one cup. Also, Folgers makes a low acid coffee now you can buy at the grocery store! :)

[ICNDonna]

My suggestion is to look at the diet section in the Patient Handbook at http://www.ic-network.com/handbook and put yourself on an IC diet. I agree that stopping all coffee for a while is a good idea --- coffee is one of the worst things and ICer can ingest.

I hope you find the right combination soon so you can get on with feeling better.

Warm welcoming hugs,
Donna

[aupell]

Thank you England, SandyRN, and ICNDonna, all very good suggestions. I’m going to look over everything and talk with my Doc. To England, well yes I used to run too and now I can’t either. For me, I think weight lifting and walking is very helpful. I take a hot shower before I workout and wear a heating pad you can stick on. I don’t know for the others but I teach my patient’s who are in great pain to do a head toe exercise. I can tell you about it if you want it has been working for me, anyways off to work. Everyone have a great day!

[leelee88]

Hello and :welcome: ..

[kjd]

hello Amanda

can you tell me bout the head toe exercises please?
thanks
kate

[laurahallie]

hi amanda! im glad you got diagnosed and have found people here that you can relate to.

just a few things... have you tried taking elmiron out of the capsule and dissolving it into a drink? ive read that some people get sick solely because of the gel capsule the medicine is in. you can also get instillations of it into the bladder. there are plenty more meds also; check out the treatment boards below.

as for exercizing, id recommend something that wont jar your bladder. im a big fan of yoga and would recommend that to anyone, ic patient or no =D

[dancemomof2]

:welcome: Glad you found us.

[aupell]

Kate, sorry I didn’t see your post. Hmm, I can write from my books later if you want but first I’ll just tell what I’ve been doing. Ok, first I take a really hot shower the steam is very good for your body. Then I go somewhere quite on my bed or a yoga mat. Lay like a snow angel hehehe. Then relax your whole body falling into the floor and focus on healing your body or if that’s to silly maybe just good thoughts, you know. Then start with the tips of your fingers tighten the muscles then relax them. Do your whole body that way working inwards until you reach your toes and do it again. Don’t forget to breath! I’m not a DOCTOR but you can look up how to help healing by using your mind. The University of Michigan has a study with cancer patients. You focus on the healing that part of your body. Well, and I also pray. Hope that helps.:pray:

[aupell]

Thanks for saying Hi glad to meet everyone!

[isaacsmom618]

Welcome! I am pretty new here too so I really don't have anything to add to the replies that you already have!

[Patrice]

Hi Amanda!

I'm a veteran here who feels pretty good much of the time. I'm going to nursing school in the fall in the evening and work full-time. It will be a two year program for a career change. I'm flaring right now and it's freaking me out. I start an evening bio class Tuesday and I'm so upset that I'm in pain. I worry that I won't be able to be a nurse if I keep flaring (I had a big one in the summer too...four years of feeling good before that). Then I think, wait a minute, I have a full-time job as a health inspector now; not exactly relaxing and stress-free. It's not as if I'm pain free all the time at work now, so I'm realizing that it's not that I won't be able to do nursing that I'm upset about, it's the prospect of not being able to do it pain free.

A friend of mine pointed out that nursing offers soooo many different opportunities from desk-jobs to teaching to clinics to hospitals. I'd love to work in a hospital, and where can you find more bathrooms that a hospital. So try and keep the faith and I'll try too.:help: