flare advice for Freqency????????

[gloriabono68]

I need advice........i never know what to do really when my bladder starts to flare........Most all of the things i read on here are for people in lots of pain........i don't really have that much pain with mine ( thank the Lord) but i do pee like every 10 minutes to 15 minutes........to 30 minutes........so taking a NAP isn;t really an option for me ....neither is relaxing and no amount of trying to distract myself seems to work either........I Never know what to eat and what to drink or how much or how little.........I was doing pretty good and thought i was getting better......i went for a whole month and a half and it was tolerable........i was doing ok........kinda like when it first started.....all my meds seemed to be working great and i thought that since they had me taking three ditrapan a day now , along with everything else it was getting better . I was actually able to go out of town for the weekend......first time in like two years.......and it started three days ago and its been raging ever since........i feel like if i move i will pee on myself so i just sit like a statue.......but i am miserable.........miserable ..........and i don't know what to do........but i pee , just not ever very much........so i was wondering if maybe i have over medicated myself and now maybe having some retension..........but i have never had that so i have no idea what that feels like.???????? anyone????????? I just don't know what bland foods are exactly..........i haven't drank anything but water for two days......
I have been under constant stress for the past couple of weeks and i think that is what set it off........either that or i have eaten too much dairy food and drank too much milk last week.......something set it off and now i can;t seem to get it to calm down........i had a cocktail today too but that doesnt work either when i get to this point.........I know stress is the enemy but i have no idea what i am going to do.......i have no money , no one will hire me and i can't get disability........i literally screwed every way i turn.......and i want to drive my car off a bridge..........i am going crazy.........luckily there aren't any bridges high enough for me to drive off where i live.........i want to just give up and let it win ......its taking over and i don't know how much more i can take.......i need a miracle and none are present.......so i was wondering if anyone out there was on my end with the constant peeing and could tell me what helps them???
thanks
gloriabono
gloriabono@yahoo.com :yikes: :rolleyes:

[tigger_gal]

(((((((hugs))))))
unfortunately, thats the dreaded IC.... frequency and urgency and alot of us pain. I wish I had an answer... I wish you felt better...... I don't have the direct link but I know some one will post it for the IC diet... We are all different tho when it comes to food and drinks.. just like meds....
I am soor I am not much help..
please feel beter soon..
hugs
Brat

[IWin]

Hi Gloria,

I really don't have anything to offer in the way of help, but just wanted to let you know there are others who don't have pain, just the bouts of frequency and urgency -- I am one of them.

When mine suddenly gets worse, I can almost always trace it to something I've eaten. Take a look at the page in the "Handbook" under diet.....don't remember exactly what it's called. The "diet" really isn't that bad. I'd first look at what not to eat and see if you can pinpoint something. Then I like to focus on what I CAN eat rather than dwelling on what I can't eat.

You might also want to call your doctor.....may be an infection. Or he/she may be able to offer some suggestions since he/she knows all your medications, etc.

I hear your frustration. Hope you're feeling better soon.

[stacey79]

Hi, Gloria. I hope you are feeling better soon. :kissing:

I also have more trouble with urgency and frequency than I do pain. I've found that heat helps alleviate it a bit. I actually have been sitting with my heating pad most of this evening. The Therma Care strips are pretty good, too.

Diet is so very tricky because we are all different. It's just something you have to experiment with. I promise you that you WILL find something that works for you. I know it's so hard right now, but it will get better.

You really ought to talk to your doctor. It may be just a slight infection. I have trouble with them. I take a low dose antibiotic constantly and still have problems. If you go in and they do a urine test and an infection doesn't show up, ask them to send it out for a culture. 70% of the time my infections don't show up until they are cultured. I think for us ICers even a slight infection shows up sooner and worse than it would for others. Slight infections can feel like major ones for us. :yikes:

I do hope your start feeling better physically and emotionally. Stress can make flares worse, but it's hard not to stress when you are going through one, especially when you also have work frustrations. You might consider some alternatives in the meantime to supplement your income. For example, I recently started my own free-lance writing business and so far haven't made much income. With medical bills and all that were starting to pile up, I decided to learn how to sell things on EBay. It doesn't bring in lots of money, but even an extra $20 or $30 is helpful!

Anyway, I'm starting to right a book here. Point is I hope you feel better soon! You will be in my prayers! :pray:

[ICLori]

Everyone has given such great advice, I don't have much to offer, except to say that I'm sorry you are flaring, I know how depressing it can be. I find that when I'm having to go all the time, my hot water bottle (you know, the red bottle thing that usually says enema bag or something at the drug store?) filled with hot water is my best friend. Many nights it was the only way I could sleep, was by lying half on my side, half on my belly, with the hot water bag sort of between me and the bed, against my bladder.

Hope you feel better soon,

Blessings, Lori

[ICNDonna]

Have you tried taking an antispasmodic? When I start having awful frequency, I start taking hyoscyamine --- it takes a day or two to be effective, but it's very inexpensive and for me very effective. You'll also want to be checked to be certain you don't have an infection.

And --- the Patient Handbook with the diet is at http://www.ic-network.com/handbook

Sending warm healing thoughts,
Donna

[Myli]

Since you just got back from a trip, I'd suspect foods as a strong contributor. Plus, of course, the stresses that you've been experiencing. That will definitely trigger mine. Sounds like it could be one of two things, reaction to the stress or reaction to the foods you have been eating. From what you have said, I would guess that food could be a major contributor to your current flare. Hopefully by now, you have looked at the diet and can begin adjusting what you are eating. I would strongly advise trying it. It does truly help.

In addition, increase the amount of water you are drinking. If it is food that is contributing to this current flair, you want to wash it out of your system. I've read that a lot of people drink less fluids because they think it will keep them from having to go so often. It doesn't work that way though. I drink a gallon of liquids a day.

I've found cold to be more helpful in stopping this sort of thing than heat. Some favor heat, some use both, use whatever helps. I sit on an ice bag when symptoms like yours hit. Usually, within half an hour, things slow down a lot or stop entirely. The relief usually lasts the rest of the day at least.

I hope you feel better very soon!!

:grouphug:
Myli

[gloriabono68]

Thanks so very much for the advice and well wishes........i know how much i say i appreciate them all the time but i really really do.......i have no idea what i would do without this website and message system........I have that IC diet no no list on my fridge......but for the most part i avoid as much as possible everything on it ...i don't even drink decaf drinks of anykind anymore........its just water and water and more water......occassionally kool-aide i have found doesn't really bother me. If i drink alot of milk for some reason that kinda aggravates it.....I think mine really is just alot of different things factoring in....... I don;t think its the trip, that was over several weeks ago..........i just went for almost six weeks straight with hardly any problems at all.......false sense of security creeped in.......cause that was really the first relief of any kind i had had in almost two years straight......they check my urine all the time and its never infected ......I take ditrapan XL 15 mg three times a day and four urelle's a day.....and two hydroxines at night.......i stopped the elmiron.......this has really been the first flare i have had in like six weeks.......I have never heard of hyoscyamine???? ICDONNA?? is that prescription???
I am under constant stress..........which i think is my biggest enemy of them all......and theres no way out right now.......and it just keeps getting worse.......
but i hope and pray something will eventually start working.........i hate living like this.....its not really living.........
gloriabono

[Babsgardens]

OH Gloria, I feel for you! I just went throught four weeks of the symptoms you mentioned. How often are you geting bladder instilations? What are they using?
I'm new here so be patient with me. I may ask the wrong questions from time to time. STESS is a horrible, unwanted companion in a lot of our lives. Wish they'd invent a stress buster pill! I need to ask.. why did yous top the Elmiron? My Doc has given me the option of starting it by mouth or doing my own instilations using Elmiron is my flare comes back or worsens. No one I've talked with says Elmiron by mouth works. Does it? My tummy is so sensitive I'm afraid it's make me sick. Gentle hugs IC sister. Stay away from bridges!!!!! Come on line and vent here where it is safe.

Barbara (Babsgardens)

[gloriabono68]

Hey barbara.........what part of north carolina are you in????? we might be close together.........privately email me ( gloriabono@yahoo.com) and i will tell you where i am.
Honey , there aren't any wrong questions.........its just a matter of finding something that works.....anykind of something that works........a cure , a miracle cure.......that would be fantastic.
I took the elmiron for about nine months , and i felt like i was in a constant flare the whole time. It felt like my bladder had knives on the inside trying to pin prick its way out.....so i stopped taking it to see if that feeling would go away. and it did........i rarely get that now......even when i am having a major flare.......why.....i have no idea. I still havent mentioned it to my uro.
i guess i should.
I take the heparin , lidacane, kenelog instillations.........Once a week.......
I have done them twice a week during my worst times. I can't really tell they do anything until i stop them. THen i realize they do help somewhat , they just don't do what they are suppose to do. ANd sometimes if i catch it right when i feel a flare coming on i can do that and sometimes it stops it from getting out of control. THe DSMO ones about killed me........some people have great luck with that kind though.
when i first started taking the elmiron , i was sick on my stomach , but i never threw up and i did have bouts with the diarehha....but she told me to take it out of the capsule and mix in a bit of water and i didnt do that anymore......still was kinda nausous but it wasnt anything i couldnt handle. but that only lasted about three weeks......I also have IBS so i have to be careful there too.
What i cant stand is the feeling i am about to pee never goes away. It jus literally drives me insane.
I am so sick of being sick. and right now i am having bronchittis , ear infection and a sinus infection all at once .....on top of my bladder problems.
yep. its fun being me.
thanks for caring..........email me anytime
kristi ( gloriabono)

[blue]

OH, Frequency is my worst enemy. When I'm at my worst, it's every ten to fifteen minutes. I get to the potty, and hardly anything comes out.

I go for my DMSO thinking I'm dying to go, and he put's the catheter in, and there's hardly any urine.

Right now, I'm good. I'm lasting for about two hours. Today is my 6th DMSO, and I feel great, along with my diet. We are going to go on monthly maintenance. I had wonderful results with DMSO before, but after the treatments, all my symtoms came back. THis time, we are going to go this route, and see if it's an improvement.

I wish you luck!

[gloriabono68]

Blue...........I am glad to hear the DMSO is working for you.........that one just about killed me...i had horrible horrible pain and couldn;t even make it ten minutes before i had to pee it out. Unfortunately i actually pee every single time i go....there is no i just feel like i have too and nothing comes out, I am actually peeing this whole time. I never pee large large amounts...but they keep checking my bladder and it is emptying out correctly every time. I have a bladder that is half the size of a normal bladder , thus futher complicating my problems. I think before its all said and done i will have gone stark raving mad out of mind , need to be locked in a padded room somewhere.
I wish you continued good luck and relief and i pray we all find something that will help us all on a permanant basis soon........
gloriabono

[blue]

Sweetie, I hope you find some relief!

[Sarojini]

Hi Gloriabono,

Well, I'm not sure what to tell you regarding frequency; I know that when mine gets going I just take pain meds and Pyridium and it kind of numbs it up a little bit, but I still have to pee a lot. :( I wish I had a definite answer for you. However, I DO want to wish you good luck and better days, and send you a :grouphug: ... we're all here for you, and I hope you feel better soon.

[gloriabono68]

Thanks i really appreciate the warm thoughts and best wishes for better days........gloriabono

[this_sucks]

Hey gloriabono, I was reading your message and it sounds like how I was the other day! I don't have any pain associated with my IC either. So when I get flared up, theres not much to help! I usually do what you do sit still like a statue and try not to move because I feel like I am going to explode! Usually my frequency flares go away in a day and if not, then I just take it easy the next few days. Sometimes I use a icepack on my bladder, but sometimes that can make it worse. My mom and friends think im psycho when I go out because I have this look of terror on my face. My doctor reccommended me wearing serenity pads to make me feel more comfortable knowing that If i do pee myself, (which I never have) that i have protection. I also have a smaller bladder then other people my age. And I do not know the last time I had a full pee, its always just little squirts like you were saying. It gets me so mad!! Especially when I miss out on school. (I am 16.) I am going to see a psychatrist and a therapist in a couple of weeks. Maybe that will help me with my panic attacks and to calm down a little. Well just know that we are all here to help and support anyone! Best of Luck, Katie.

[Babsgardens]

Oh Katie, You are so young to being dealing with this. Hang in there. Maybe your family doesn't understand but we do here. So come back and vent as often as you need. I'm gald you are seeing a psychiatrist to help you cope with this. I bet it will help you a great deal! IC can play on your nerves big time! Take care Sweetie. And, know you are not alone.
Barbara

[gloriabono68]

Oh katie.....bless your heart honey......I totally understand that look of terror because i often see it on my own face. I have panic or anxiety attacks as well from time to time. I do have a therapist. So i do highly recommend that. He doesn't understand the illness but he does understand why i panic over it. He doesn't know much about it as you will find out as you go along. Even the doctors sometimes don't know what you are talking about or if they do i have found they have a complete misconception about what it really is. Do not let this discourage you too much. Eventually you will find the right doctors and things to be around. Plus you have all of us at this website. Do not ever feel theres nothing you cannot talk about here. Believe me i whine and cry and moan here all the time because these really are the only people that trully understand. I am not flaring right now . thank the good lord. BUT i will be in what feels like a constant flare for days and weeks on end and then finally it will let up for a few days. I try and be very careful of what i eat and drink. I hope you have been told these things as well. No chocolate or caffiene or anything acidic , which includes soft drinks. Or use prelief before you eat or drink anything acidic.....it works pretty well. Have you done any installations yet?? are you on any kinds of medications? I am just curious to see how they are treating you for this. IF you don't want to say thats fine or you can email me privately here or at gloriabono@yahoo.com. I also have a small bladder. Its half the size of a normal persons bladder. and you are one hundred percent correct........this sucks.!!! But i have made some good new friends here at this website and everyone is always supportive and understanding and most of accepting. We all love and care for every single person that comes here. If theres anything at all i can do to help you in anyway do not hesitate to email me or ask.......I will pray that you have better days.
take care
kristi ( gloriabono)

[lightheaded1der]

This is my first post ever on the Message Boards although I have been reading them for a while. I too have the constant urgency and frequency. I am up so late tonight at my keyboard because I am flaring as well. As soon as I get to my bed RIGHT AFTER I leave the bathroom, I feel like I have a full bladder. I don't have any of the pain that some others post about, but extreme discomfort and worse, I can't fall asleep. I was diagnosed over this last summer and I feel really cheated by my urologist so far. I will admit I haven't tried the diet (except I rarely drink anything caffeinated), but the Elmiron has not been working for me, nor Detrol LA, and my doctor hasn't really mentioned too many other alternatives. My frequency and urgency are worse right at bedtime and then for about 2 hrs. after I wake up. Anyone else like this? So far, I have never talked to anyone else who has IC (I live in Jacksonville, FL) and sometimes I feel so miserable and alone. I would love to hear any responses to this post and any helpful advice. This seems like such a supportive place and that's what I need more than anything right now.

[stacey79]

Hi, lightheaded! Welcome to posting on the boards! :welcome:

I also have the most trouble with bladder pressure and frequency. Bedtime is the worst for me. Sometimes mornings are my best time, but then other times they are worse as well. I'm not sure why that happens. I have trouble getting comfortable. My bladder feels best laying flat on my back, but when I'm not flaring, I'm used to laying on my side of stomach. The last few nights I've found that it helps to put a pillow between my legs so I can sleep on my side. The pillow keeps my legs from squishing together and squishing my bladder. You might try that.

You also might try some diet stuff. I didn't test the diet thing like the site suggests. I know I should have, but I've been dealing with this most of my life, so I know my worst trigger foods. To figure out the others, I kept a journal for a few weeks and kept track of what I ate and how I felt. I found that in addition to what I knew bothered me like caffeine and fruit, onions and tomatoes also bother me.

I hope you start feeling better soon! :grouphug:

[ICLori]

Hi, Lightheaded, I have the same problem you do. Sometimes it's very hard to sleep when your bladder is flaring like that. I had a bad night last night, didn't do anything "wrong" that I could think of, but my bladder just decided to be difficult.

Sometimes heat helps - a hot bath, a hot water bottle between the legs or a heating pad set on high.

Your urologist should not be giving up so early in the game - there are tons more medicines to try, surgical procedures, etc. If your uro isn't willing to try more things for you, please try to see another doctor who will help you. No one should be left so miserable like this.

Blessings, Lori

[this_sucks]

hey! you sounded like me when i first posted. i dont have any of the pain either that some people have on here, just the lovely feeling of always needing to go to the bathroom! my urologists gave me ditropan which is like detrol and that hasnt helped me either but he also gave me an anti-depressant. it has worked a whole lot for me, i used to go 20 times or more a day and 4 to 5 times at night and now i go maybe 5-9 times a day and none at night! nothing seems to help the feeling of urgency though :( you should talk to your doctor about the anti-depressant. im on the diet, but i havent feel found that it works. it works for some people really well so you should try it. i have learned lots of rest and getting away from stressful things to help me. taking a bath really helps and sometimes icepacks (heat doesnt work for me, it makes me worse) when i feel all bloaty and everything. also wearing comfortable clothes like sweatpants help. if you want to talk to me some more pm me or email me at oxkaytixo@yahoo.com. i love talking to people that know and understand what im going through anytime!
katie*

[Jaycee]

Hi Gloria
I can relate to what you are saying as I am going through a period of prolonged stress and am desperate to try and contain it so as not to exacerbate my bladder problems. The question should be not "How do I deal with a flare?" but "How do I deal with the stress thats causing my flare?"
It would be lovely to be able to just switch off when we want to but its not as easy as that. We end up with a vicious circle where the increasing bladder problems just make the stress worse and so on.
Sorry I probably have not been much help on this one except to say I am going through the same thing at the moment and struggling for answers in the same way. My thoughts are with you Jenni X

[Babsgardens]

When I'm flaring night time and mornings are worse for me also! One of the worst things, besides the feeling that I might go insane because my brain was always telling my bladder that I needed to pee, is the loss of sleep. But, hang in there. There is a reason they call these times "flares". In the beginning my Uro had me coming into the office three times a week (for four weeks) for Elmiron instilations. He said he found Elmiron works better and faster through instilations and there are less side effects. After about a month the nurse suggested that I add a antihistimine. She handed me a script for my drugist. Well, two days after adding the antihistimine I noticed a BIG difference. Not sure if it was the Elmiron, watching my diet or the antihistimine but something is working. Today I have the instilations one time weekly. Next week my husband is going with me and the nurse is going to teach us how to do the instilations at home. This will save me time, a co pay and allow me to have a treatment when I need it. Do watch your diet and take Prelief. It seems to help also.
It comes in powder and pill form. I mix a package into my coffee (which I have cut WAY down on) each morning. I also sprinkle it over dishes like pasta. But, if I'm having trouble.. I steer clear of anything I think might make it worse. Also, I highly recommend that any "newbie" read The Interstitial Cystitis Survival Guide. It helped me understand what is happening and educated me on what questions to ask my Doctor. I'd keep writing but I gotta' go pee :) Gentle Hugs, Barbara (Babsgardens)

[gloriabono68]

welcome lightheaded!!!
WELCOME TO MY WORLD>>>>> anyway....i so understand what you are going thru and feeling. DO not let your urologist rule your illness. demand to see someone else , do some research on the net to bring to him/her........theres all kinds of other medicines to try and it sounds like you havent tried any of them. ELmiron takes almost a year to begin working for most people. I myself took it almost that long and i frankly thought it was making me worse, so i stopped taking it. I was taking three 15mg ditrapans a day, four urelles a day, hydroxine at night and then the elmiron. THat combo plus bladder cocktails( medicine placed directly into bladder) gave me some relief.
Everyone has a different combination that helps them. What helps some , won't help others and vice versa,,,but don't give up. I kept changing urologists until i found one that really wanted to help me. FOR almost 15 years i took nothing but two ditrapans and urised and avoided certain foods and i did fine , about two years ago my IC went haywire and i had to change my meds around and try new things. My next step was to have the interstim implant.......but now i am pregnant and had to be taken off everything........so things are not so great bladder wise right now but shes still trying to figure out what we can do.......and calling dr evans......to see what he thinks.......
my point is.........don't give up........keep at it until you find something and someone to help you.....no matter how hard and lonely and dark and depressing it becomes.......
we are all hear for you. email me anytime......gloriabono@yahoo.com
kristi

[mrich]

One of the most debilitating aspects of this condition is Anxiety for me.
I feel like the anxiety is almost the worst part of it. When I am feeling better I worry about when Im going to feel worse again. So in a way, I never find relief. It only takes a twinge of a bad feeling in my bladder to get me started on a panic streak!! I am tring to cope spiritually with this in my life bc I feel like that is the only thing that can bring me comfort. I think we all get frustrated with our disease and feel like jumping off that bridge. I often tell my husband I wish I could just pull out my bladder and get a new one. I often times feel mad at my bladder , like it isnt a part of me. Ha now isnt that crazy. Ha Hang in there and remember tommorow is a different day.
:loco: :loco: :loco: :loco: :loco: :loco: :loco: :loco: :loco:

[Babsgardens]

Mirch, NO It's not crazy to feel anger about this chronic illness! And heck yeah... I've thought about getting rid of my blasted bladder. The emotional strain we ICer's feel takes it tole. And, no one can truely understand what we feel unless they too are dealing with IC. I remember in the beginning I thought I must be going mad because I was having such pain and discomfort and the Doctor's and nurses around me seemed so calm. One day I just stood in the hall, outside a rest room, in my Uro's office, and cried until a nurse spotted me and took me to a room. I felt so alone. In the beginning I would even cry myself to sleep with a heating pad between my legs. So YES we do get depressed and totally exhausted. But, we keep going and educate ourselves by reading all about our condition, we find a Urologist who actually LISTENS and we learn more and more about how to calm our sensitive bladders as time goes by. As Kristi said we all have to find the right drugs, etc., for ourselves and we all are different. It took me seeing a second Urologist to get the right treatment. I'm not cured.. none of us are.. but I'm better than I was.. and plan to be better still. Hang in there.. and Use your Spirit!!!! by all means. I pray often that my bladder will stay calm.. and that if it doesn't God will give me the serenity I need to get through the flare. God bless us everyone... Gentle hugs, Barbara (Babsgardens)

[stacey79]

I agree wholeheartedly with you ladies. Anxiety is tough. I read somewhere on this Web site that people who have IC many times have symptoms of Post Traumatic Stress Disorder. Like we are always waiting for something bad to happen. I've had a monster flare off and on for about a year. I know every time I start to feel better, I get anxious, wondering how long I have until I'm feeling bad again. Then I end up doing way too much work, stressing myself out and causing my bladder to rebel, once again. It's a vicious cycle. I'm working hard on breaking it. I've been praying about it.

I also have to agree that finding a good uro is so very important. My uro and his nurse have been very understanding helpful. Some of the other doctors in the office aren't. I've had to deal with them on off hours and I don't like that, but overall, I'm just so thankful to find a doctor who will listen to me and help me find a treatment plan. We're still working on it, but after many months of being discouraged, I have hope that either I will start feeling better or the Lord will continue to help me through.

Sometimes, though, I wish my bladder and I could talk and work out my anger issues with its bad behavior! :)

[gloriabono68]

amen and amen sisters...........i am so mad at my bladder most of the time that i cannot stand myself. I have off and on even been mad at GOD For this horrible illness he has gifted me with. I don't understand why me ya know?? Things i know i am not suppose to think or feel and i am still struggling spiritually with that. Sometimes i feel like GOD and everyone else has deserted me and i know that isn't really true. I Just have so much going on in my life right now with the unexpected pregnancy and IC on top of it that i am just not sure how much more i can really take. RIght now my IC is on the calmer side but like everyone else i too am waiting for the other shoe to drop.
I know all heck is going to break loose i just don't know when and that is enough to drive a sane person crazy.
BUt i try and remember that GOD is always there despite everything else and that maybe this is his way of getting my attention and putting me back on the right track.
Cause if i ever needed him , its now.
gloriabono

[stacey79]

Hi, Gloria. Dealing with everything certainly is a struggle and a MAJOR test of faith. It sounds like you have quite a bit going on right now.

Here's the deal: I love quotes! :) A month or two ago, I was in the middle of going through my first round of DMSO treatments and having a heck of a time. I got an infection at one point and over all was completely zapped of energy. My mom sent me a card during that time with this quote in it. I thought I would share it with you. It touched my heart.

"God has not promised to shield us from trouble, but He has promised to protect us in the midst of trouble." - Billy Graham

I don't know if that will help. If not, there are quite a few others I could post! :lmao: Remember, we're all in this ship together! :grouphug:

[lightheaded1der]

Thanks to everyone for your advice and general kindness. I think that this forum has really helped put into perspective how un-alone I am. I have still never met anyone in person who has IC (I live in North Florida) and sometimes I feel really embarrassed when I have to go to the bathroom twice during a 50 minute class or sometimes 3 times during a movie. I know I shoudn't, but it's hard knowing that NO ONE that I know can sypathize with me really. Luckily, I have made some great friends that I can laugh with about my IC and also complain to when it gets really bad. They all know that when we go somewhere we should sit near the bathroom or at least on an aisle seat so I don't disturb others when I excuse myself. On an exciting note*** I did study abroad this past summer in Costa Rica even though my doctor wasn't sure if I should since I had just recently been diagnosed. I made some great friends in my group though and they understood that I couldn't take the public bus b/c I wasn't sure the driver would stop for a macha (white girl) just because she had to pee. I was worried that IC would ruin my trip, but I found that being honest with people and telling them up front about the problem (instead of being embarrassed about it) helps them be more understanding. Anyway.... my screenname is lightheaded1der also if anyone ever wants to chat!! Hope you guys all have a good weekend!!!

[Babsgardens]

Stacey, Neat quote. Gloria.. (((gentle hug))). You know.. I don't think God causes these bad things in our lives.. but has promised to never leave or forsake us. To me that is what faith is.. knowing whatever we go through we are never alone. Gloria have you research IC and pregnancy? Maybe you'll get lucky and the change in hormones will also help your bladder somehow. We can only hope! We're here for you Gloria! God is with you.. and in a way... so are we :)
Barbara (Babsgardens)

[gloriabono68]

Thanks stacey,
I do appreciate that. And deep in my heart i know all of that......sometimes its just hard to see the forest for the trees so to speak. I am just feeling so overwhelemed and things seem to be so out of my control right now..I should be so happy about having this baby and i am not. Nothing is going as it should. I feel like crap. And i am getting married at the end of jan. I don't know where or when yet i just know that i am. I cannot relax. I feel like i can't breathe and my heart is pounding out of control. I don't know how much of it is anxiety or if something is really wrong . My blood pressure has been being up a bit so it could be from that. BUT i don't go back to the doctor until the 10th.
I just want to crawl in a whole and not come out for a long long long long time.
gloriabono

[stacey79]

Gloria, many hugs to you! :grouphug: :grouphug: :grouphug: :grouphug:

Bless your heart! You are dealing with so much right now - a baby, a wedding, your health, the holidays. I will keep you in my prayers. Please remember you have all of us here on the boards to vent to.

Because I can't control myself, I have another quote/verse to share with you. This is one I learned as a child that I have repeated over and over when I feel so alone and afraid of the future:

"So, do not fear, for I am with you; do not be dismayed, for I am your God. I will strenghten you and help you; I will uphold you with My righteous right hand." - Isaiah 41:10 (NIV)

:grouphug: :grouphug:

[gloriabono68]

Thank you stacey.......that is very sweet and i appreciate your prayers and your concern. I hope that you and your family will have a very blessed and happy holiday season as well. Yes i do have alot going on right now , i am overwhelmed but i imagine sooner or later it will start feeling better and looking better.....its just getting to that place is the hard part. Thank you for the quotes, i need all the reminders i can get.
Take care,
kristi ( gloriabono)

[lbcharel]

hi I have the dmso at the hosp every 3 months can you do something at home as well to handle the pain ,its a real bad flare up Im having

[stacey79]

Talk with your doctor about it. I know some ICers do instillations at home, if you're interested in that. I've not done that before, but hear it helps for those who need it.

You might also talk with your doctor about taking oral medicines if you aren't already - like Elmiron, Elavil and/or Ditropan/Detrol, etc. Those can make a big difference. I'd also talk with him about whether the DMSO is helping. DMSO never helped me and only made me feel worse for the weeks I did it. However, it has been a major help to some.

THe other suggestions are self-help like watching what you eat, not standing for long periods of time without a break, taking a warm (plain) soothing bath, trying a heating pad or cold pack, etc.

No matter what, I hope you find something that works for you and start feeling better soon. SEnding some warm, gentle hugs your way! :grouphug: :grouphug: :grouphug:

[gloriabono68]

i have had several different kinds of installations , however none of them worked of for me at all........elmiron only made me worse and i took that for a year.....
i take enablex, ditrapan, urelle , bladderq , zyrtec , tranzene, zoloft , prevasaid ...it just never ends.......
thanks for the suggestions
kristi

[OrlandoP]

One of the most debilitating aspects of this condition is Anxiety for me.
I feel like the anxiety is almost the worst part of it. When I am feeling better I worry about when Im going to feel worse again. So in a way, I never find relief. It only takes a twinge of a bad feeling in my bladder to get me started on a panic streak!! I am tring to cope spiritually with this in my life bc I feel like that is the only thing that can bring me comfort. I think we all get frustrated with our disease and feel like jumping off that bridge. I often tell my husband I wish I could just pull out my bladder and get a new one. I often times feel mad at my bladder , like it isnt a part of me. Ha now isnt that crazy. Ha Hang in there and remember tommorow is a different day.
:loco: :loco: :loco: :loco: :loco: :loco: :loco: :loco: :loco:

MRich, you hit the nail on the head! As my yoga teacher says, when you feel good, remind yourself "Things are as they should be." Anxiety is a HUGE contributor to exacerbation of symptoms. When I am engaged in work I like, I almost always can deal with the pain and flare if I am in one. Case in point: just came back from a two week job overseas. I was so scared that I wasn't going to be able to travel. Well guess what? I didn't feel 100%, but darn close. And I had lots of hours where I didn't think about my problem at all!

[amanda8]

i am also a victim of horrible frequency/urges, i dont have pain i go every 10 mins little at a time, i have had this horrible flare for 4 months non stop peeing and have tried every medication nothing helps, yesturday had 1st heparin/dsmo and its has agrivated it even more, i know its really frustrating i just pray that i can get back to normal soon i am already going crazy!!!

[Katrina]

http://icandme.9.forumer.com/index.php?showtopic=53
1 think it helps to figure out the cause? Do you have a shrunken bladder? Do You have any retention?? Are you having bladder Contractions?? Stress Incontinence or Over Active Bladder??? Pelvic Floor Disfunction?? (You may have more than one cause) Is your freuquency because of the pain in your bladder or is there more to it?

[gloriabono68]

:pray: I so feel u girl.........I am taking bladderq and it seems to be helping some......i dont know if you have tried any of the alternative herbal treatments?
I rarely ever have pain but like u i pee all the time........its very debilatating at times.....
email me privately if you ever wanna talk..........
kristi

[amanda8]

my bladder is 3 times smaller then what it should be when i had the hydro the uro had told me this, so it may be the cause of the flare ups but i rarely have any pain just urges/frequency. she did try me on over active bladder medicine but nothing helped. gloria i am looking in to herbal meds since precribed do not help, i ordered some cystaq and i was looking in to aloe vera caps, have you tried any of these? i will look in to the bladderq since you said it helps with your frequency, how long have you been on it?

[gloriabono68]

HEy,
I have been taking the bladderq for a little over a month, i take two in the morning and two at night. I have not tried the aloe vera caps i hear you have to be careful which ones you purchase , so i havent tried that......everything works differently on everyone so what works for one may not work for another.....Just curious as to what medications that you have taken and for how long........have you been put on elmiron?
This is what i take now
enablex 15mg twice a day
ditrapan xl 15mg once a day
urelle 4 a day
bladderq 4 a day
zoloft 25mg once a day
tranzene 7.5 mg one at night
prilosec once a day
zyrtec once a day
dicylomine ( as need for IBS)
I know its weird but a lot of times its the combination that works......
also have u tried the installations and all that stuff??
theres also other meds for your bladder that i have tried that didnt work......vesicare and sanctura.....
like i said everyone is different it may be that you didnt take it long enough or just havent tried enough different once........IC is not an over night fix when it comes to any relief , also your diet plays a huge role too..........did u know to cut out alot of stuff that you eat and drink??
i too have a small bladder but i was born that way so they tell me its half the size of a normal bladder.......so either way i am screwed .......
just wondering......sorry if its too many questions.......
kristi ( gloriabono):smile tee

[lbcharel]

Hi never too many question Im always interested in any inf about IC ,I take Elmiron,apo-imipramine and opuirm for spasums and yes I have treatments for the bladder evry 3 months at the hosptial been in a bad way for so long hopeing to turna corner,yes I dont drink pop at all now and cut out spicy things I do have problems trying to find what I can eat for dinners and lunches I find that a job,there is a book called Taste of the good life might try to get that take care talk soon

[Berkshire Road]

I also have these nighttime flare-ups, where I have to go every fifteen minutes. A friend suggested that some of that urgency could be coming from my urethra rather than the bladder itself. So, I tried lidocaine jelly, you kind of squirt it on your urethra and up into it. And some of the time it does help. Not always. So I think sometimes my urethra is in spasm or I have some feeling of pressure there, but I really can't tell if it's that or the bladder. I try the lidocaine every time and sometimes it helps a lot. Just thought I'd pass that on.

[lbcharel]

Hi hope your feeling better ,great pics ,I have been in a flare up for 2 months crazy with IC ,had a great weekend got away to the Island which was a change just rested,how was your weekend

[Claredale]

I also have these nighttime flare-ups, where I have to go every fifteen minutes. A friend suggested that some of that urgency could be coming from my urethra rather than the bladder itself. So, I tried lidocaine jelly, you kind of squirt it on your urethra and up into it. And some of the time it does help. Not always. So I think sometimes my urethra is in spasm or I have some feeling of pressure there, but I really can't tell if it's that or the bladder. I try the lidocaine every time and sometimes it helps a lot. Just thought I'd pass that on.


Are you talking about the lidocaine that comes in the syringes? That is definitely my problem most nights and I can't find the "jet gels" anywhere...

thanks, T83

[bahhumbug941]

OH, Frequency is my worst enemy. When I'm at my worst, it's every ten to fifteen minutes. I get to the potty, and hardly anything comes out.

I go for my DMSO thinking I'm dying to go, and he put's the catheter in, and there's hardly any urine.

Right now, I'm good. I'm lasting for about two hours. Today is my 6th DMSO, and I feel great, along with my diet. We are going to go on monthly maintenance. I had wonderful results with DMSO before, but after the treatments, all my symtoms came back. THis time, we are going to go this route, and see if it's an improvement.

I wish you luck!

Blue: Has your doctor mentioned anything to you about WHY nothing comes out when he caths and you feel as if your bladder is completely full? I have been self-cathing since Jan of 2007, and recently I began (AGAIN) getting horrible frequency with slim to no liquid even in my bladder. THANKS!

[bahhumbug941]

Oh Katie, You are so young to being dealing with this. Hang in there. Maybe your family doesn't understand but we do here. So come back and vent as often as you need. I'm gald you are seeing a psychiatrist to help you cope with this. I bet it will help you a great deal! IC can play on your nerves big time! Take care Sweetie. And, know you are not alone.
Barbara

I feel your pain/horror as well. I was 16 too when my IC starting flaring, was diagnosed when I was 21. I'm 23 now. Never been to sleep overs, never been on vacations, couldn't even leave the house most of the time. Trying to explain it to male professors in college was a problem until I wrote a note explaining my IC flares (I'm a professional and technical writing BA) and had my doctor sign it. If you want a copy, just PM me here or IM me on aim at officehermit1984. Hang in there. Anytime you need to vent, please feel free to contact me. I know what is like to be young, in the prime of your life, and feel like no one understands. I'm here for you!

[lbcharel]

Hi I know what its like when you cant go anywhere ,I have missed a few trips this year because of pain hope you feel better

[lbcharel]

I have dmso treatmentes every 3 months and have had them for at least 10 years sometimes I think its going to help other time I dont think so Iv been in great pain for 2 months now and have my next treatment sept 11 hope for the best thats all you can do ,hope you feeling better

[amanda8]

i am also one with sever frequency/urgency i recently had a 4 month flare, during that time i had hydro/cyst/biopsy, tried medications and went through hell, from the surgery my uro said my bladder is very small which contributes to the frequency the last OAB she tried me on is enablex which actually helps, it calms the frqeuency down and i stick to my diet. i know how bad it feels it totally takes over your life and daily activities, it does eventually calm down with the right medication and diet, i hope you feel better soon but dont give up hope it does get better and through it all you can learn what helps you to help keep it better.