Still depressed about having IC...

[LithEruiel]

I've been diagnosed with IC for over three years...had symptoms for almost four years now and I'm still depressed about it. I know I'm lucky because my IC isn't that bad. I still work and go to school, I don't have many dietary restrictions and very rarely have pain and if I do it's mild. But the frequency...I often feel like I just can't take it anymore. Like today...I was at clinicals for school for 8 hours and I went to the bathroom probably five times. I know that's not bad for someone with IC, but it's hard when I feel like people are "watching" me. I had another student for my partner the last couple days and it just felt like I was constantly saying "I'm gonna go to the restroom" or "I'll be right back." It's just embarrassing. Or if I go out anywhere I always know where the bathrooms are. Like if my boyfriend and I go to several places I'm always thinking if I can make it until we get to the next place or if I should go before we leave or if I can make it until we get home...I'm so tired of worrying about bathrooms and how much I go to the bathroom and if people are noticing how much I go to the bathroom... Before I started having IC symptoms in 2008 I NEVER worried about bathrooms...I'd go all day without going to the bathroom sometimes. I still just feel so not "me" anymore...

I was doing really well for a few months because I was on antidepressants... they helped my depression AND IC...my doctor said the antidepressants work on chemicals in the bowel and bladder also and reduce symptoms of diseases like IBS and IC. First I was on Zoloft, then it made me have trouble sleeping and made me feel like I was starving all the time (and I need to lose weight, so that was awful). Then Prozac, but last month I discovered I was allergic to it when my face and tongue started swelling. Those drugs made my bladder feel so good, but the rest of my body didn't like them. I've tried so many SSRIs in the past (for depression before I had IC) and have had problems with all of them. Now my doctor wants me to try Depakote since it's in a different class of medications...BUT, since I don't have insurance I have to wait until the patient assistance paperwork goes through and for the meds to be mailed to my doctor's office before I can start. So I'm just stuck right now. (From what I remember from working in a pharmacy, Depakote would cost me about $500 a month with no insurance.)

In a couple weeks I have to go on an ambulance ride along for school (I'm in critical care right now) and I'm really nervous about that. I'm probably going to be stuck on the ambulance and have to pee... even if I don't *really* have to I'll make myself so nervous about it my PFD will flare up and squeeze my bladder all night long. I don't know what to do. I'm thinking about talking to one of my teachers about it, but I don't think there's anything that can be done about it...I have to go.

Lately I've been having trouble keeping a balance of hydration too...I'm either dehydrated which increases my frequency or over-hydrated which increases my frequency...can't find the happy medium... so frustrating.

[traceann]

Wow, I can so relate! I can remember not wanting to go anywhere - like friend's of my then-boyfriend (now husband) houses because I knew at some point I'd have to go to the bathroom, and it was so embarrassing to me. Mostly because I knew, once I went it was all downhill from there, lol. It was go go go. I never wanted to go visit anybody like that. I can remember a graduation party I went to once and it seems I spent most of my time in the bathroom.

Then there was the Thanksgiving I went to at a restaurant with my future inlaws (they knew about my IC) , I had worked myself up so much that pretty soon the wheels came off the cart and I was in the bathroom so many times and I got so embarrassed passing the same table of people what felt like 50 times in the span of an hour on my way to the restroom, ugh. And on top of that I still had a 3 hour ride home! I will never forget that day...ever. Being in tears at the dinner table was pretty memorable too...

I have discovered though, that telling the important people that need to know - like instructors, close friends etc -- can be a HUGE help in reducing the anxiety. It's like I'd gained allies, and they helped me not feel so embarrassed by all the potty trips. Because I, like you, could work myself up into a flare, just by power of suggestion. Unfortunately I can STILL do that with my IBS, boo hiss. The more anxious I got about having some kind of trouble, I was pretty much guaranteeing I was going to have problems! I can be my own worst enemy, lol.

Anyway I know it's so frustrating and depressing, but keep on keeping on and you'll find your groove

Hugs,
Tracey

[ICNDonna]

I agree that it's a good idea to make arrangements ahead of time. It could make you much more relaxed about bathroom trips. You are going to be a top notch nurse!

Donna

[cmclien]

I totally feel for you! I would say I'm in the same boat as you frequency wise. I always know where the bathrooms are everywhere I go. I often dread going into the city knowing I'll stress over bathroom locations and then I drink less which makes it burn which isn't good. Its sad because I'll buy tickets to a musical and then I'll start dreading going a few weeks ahead. I tell my husband not to say anything to me about going to the bathroom frequently (as in frustration) because it stresses me out and makes everything worse. He's pretty good but gets annoyed with it all I think...he's like a camel and I swear can go 6-8 hours and he never has to drink anything. I drink alot because my bladder is happier when I do.

You are certainly not alone! I agree with the others though why not mention this to your instructor? It might make you feel better and they won't wonder anymore whats up with that. I would hope if anyone would understand this it would be others in the medical field.

Another suggestion is to take an azo that day, I find it quiets it down for the day and usually take one now if I'm going to be out for a long time like going to the city.

The other thing that has helped me is reminding myself that my bladder really can hold more then my body is telling me. I am working on the bladder training now have you tried that? After the cystoscopy and knowing they put ALOT more water in my bladder then I ever have to go has reassured me some that my brain is being given incorrect signals from my bladder. I don't know but its somehow reassuring.
Good luck

[LithEruiel]

Thanks everyone

Most of my instructors know I have IC and they don't think anything of it. They don't care how much you go to the bathroom, so that's not the problem. It's the other students...I told a lot of people that I have IC or I'll tell them something more general like I have a muscle problem (PFD) and people have been supportive or at least ok about it. It doesn't make me feel better though. My boyfriend has been wonderful about it and it still embarrasses me around him. I even feel weird around my family who wouldn't think any less of me if I grew an extra head or something.

AZO doesn't seem to help me. I think most of my problems these days are from PFD, not IC itself actually. I don't feel so much irritated as just SQUEEZED (dunno why I didn't mention this in my original post...I was tired, but was thinking about it and couldn't sleep). I take Zanaflex everyday (my doctor said it's safe because it's a low dose and doesn't create dependency or resistance to it) and if I don't its unbearable...not pain wise, but the frequency. I also use a heating pad a lot. I love hot baths, but I don't take them because I worry about UTIs.

I know what you mean about telling yourself your bladder can hold more...I tell myself "I DON'T have to pee!!" But it doesn't help to take that sensation away at all. Sometimes I really DO have to pee every half and hour or so because I drink so much water. I never used to drink much before I had IC, so I could have just had a small bladder all along and didn't know it.

It's strange because the only place I don't have the frequency problem is at work. I'm so busy I don't have time to notice that I feel like I have to pee. The thing is I don't even like my job (nurses' aid). I like aspects of it sometimes and it's helped me a lot with school, but it's so busy it's ridiculous. I sometimes actually think to myself "oh I'll feel better when I'm at work." All the walking probably helps to loosen my muscles too, but then I can barely move when I get home (I work 12 hour shifts). Maybe when I graduate and work full time I'll feel better, who knows.

[flowerangela]

ashley i admire you for being a CNA and a student nurse while dealing with these illnesses. i used to be a cna and attempted pre-reqs for nursing school and i know the job-cna- is hard and frustrating work (one of the reasons i got out of it,it just wasnt for me) and the studying is also intense especially when youre in a program.who cares if you have to pee 100 times a day you are following your dreams to become a nurse and thats the important thing. i cant bring myself to go outside the house because i cant bring myself to even get out of bed because the pain is so bad.i can never pee no matter how much water i drink i am always dehydrated and fearing im going to have to start cathing myself at home soon. im 24. i was going to start working on some classes towards becoming a florist online but may wait until i start feeling halfway decent so i can put more effort into it because that is my dream.either that or thinking of just applying for disability. i thought about it though.. even if i applied for disability and got a check i wouldnt spend much of my check cuz i live with my parents so no rent no grocery bill,etc.youre lucky to also have a supportive boyfriend. i fear i will never have a b/f or a spouse again because of this. i am not myself anymore. i would suggest if possible switching to the night shift for cna when its not so busy,maybe they would accomodate you with that.good luck in school and never give up even though some days make you want to.nice to meet you.i'm sure you will make an excellent nurse when you finish school.do you know what type of nurse you'd like to be yet like your specialty?

[LithEruiel]

Thanks Angela. I think it's really cool you want to be a florist. Do you want to run your own business?

I feel like I'm not myself anymore a lot of the time too. My ex-boyfriend broke up with me in large part because of my IC...I was very depressed about feeling terrible all the time and not knowing why and other things that were going on like my job (this was before I was an aid or in school), having no money, etc. I never thought I'd meet anyone again and I never had much luck with guys anyway, but I met someone, so you can too. I think I want to work on the night shift when I graduate...it's much less stressful. I work it once in awhile, but it's hard right now having my schedule thrown off like that. Once I'm working full time I think it'll be fine though...we work three 12 hour shifts so I'll still have four days a week to sleep and do things at normal hours!

I want to be a nurse practitioner and treat people with IC! When I get my RN though I want to stay on the Med/Surg floor where I work until I finish grad school...I figured I'd go slowly and take online classes because I need to work full time.

Nice to meet you too!

[flowerangela]

hey ash thanx for your reply. i finally went to the er yesterday and got some relief.pain wise and being able to use the bathroom again.they found out i have a uti on top of this so they put me on antibiotics.im hooked up to a foley now and wont have it out till i see my uro/whenever he thinks its time.

yes i am so in love with the idea of becoming a florist.before i got sick i wanted to work for someone and get my feet wet and then maybe try to start my own shop. but with all this pain im thinking more towards maybe a home business so i could work at home,set my own hours,etc. right now though im focusing on getting myself used to this whole IC thing.

thanx for the encouraging words about the b/f.yea right around the time i started getting sick all the time my ex b/f broke up with me too on new years day...so im thinking about staying single for awhile. luck with guys has never been good unfortunately.

there was guys flirting with me in the er,one of the male techs even acted like he thought i was pretty and wanted to know more about my condition because he'd never heard of it and was very sympathetic. so that kinda gave me a confidence boost. thats great that you want to help uro patients/become a NP.im glad to be feeling better. i actually got more accomplished at the ER than at my uros office and everyone keeps tellin me my uro is the best in my region for this condition?we will see.

[LithEruiel]

I'm glad you got some relief! I'm surprised they knew what to do at the ER...when I went to the ER/urgent care for IC and IC related issues before I was diagnosed they looked at me like I had two heads or something. I guess maybe it would be different if I was able to say I have IC and etc. A lot of people think I shouldn't go to a gynecologist for IC, but she's awesome (she is a urogynecologist though). Maybe you could try another doctor, you never know.

That must have felt really good to have guys flirting with you in the ER...I was telling my b/f the other day that only old guys ever flirted with me lol

[flowerangela]

lol ash.. i saw the dr today (mine is also a urogynecologist). i got some more pain meds and scheduled the next instill.. this is 2 of 6. got the cath out thank god.. it was a defective/ leaky one im trying to adapt a more positive attitude about my ic diagnosis. it is hard though when you are diagnosed like i was and they tell you nothing about it (he elaborated more today). i went online and when i saw the words "no cure".. it freaked me out and sent me into depression. im making an appointment to see a therapist and may be try to get a support group started in my town so i dont feel so alone. the forums are great though i love the people here and the support.as for guys,i guess my view is now the right one will come when its time.. jobs as well. im lucky to have my family supporting me right now but i know that will not last forever so i'm hoping to take some sort of floral class online. im definately applying for that patient assistance program for elmiron, we cant afford almost 300 and thats with insurance.

[LithEruiel]

My doctor told me a little about it when I was diagnosed...she said there was no cure, but you can go into remission, so I kinda assumed for some reason that I'd go into remission, but I still never have I don't know, I guess some people would consider that I was. A girl in my class has IC also, but she said "I'm done with that now." I guess she doesn't have pain anymore, but she goes to the bathroom a lot...but she thinks she's cured. I just can't get used to it because I used to hardly ever go to the bathroom...like just three times a day usually, and now I feel like I live in there. Of course if she always went a lot, even before she was diagnosed she might feel like she's "done with it."

Sounds like you're feeling better about things. I've thought about starting a support group too...maybe when I'm done with school