I have what??

[mlch]

Hi all,
It's time I introduced myself after lurking for a week. My name is Laura. I'm 38, married and have two adorable kids ages 6 and 4. My wonderful hubby is a firefigher and I am a stay at home mom, ebayer seller and mystery shopper.

I was dx 2 weeks ago with IC. I'd been having symptoms for at least 6 mos. Actually years of being told I must have yet another UTI even though the urinalisys was neg. My family Dr was clueless and prescribed antibiotics one after the other. Even after my hubby carried me into her office without an appointment because I couldn't walk from the pain, the Dr merely gave some lortabs and detrol and sent me home.

I decided to try my ob-gyn who as luck would have it was on vacation so I saw the nurse practioner. It ended being a blessing within 5 minutes of telling her my story she said thought it could be IC. We did an ultrasound to rule out other causes and then she set me up for a postassium test. (painful!) Now here I am a couple of weeks later still in shock.

As happy as I was to find this board I became depressed with the reality as I read the messages here. It seemed far worse then I was led to believe from the Dr. The thought now I have this and it is here for life is unimaginable. I've had many tears and one really bad night.

I do have some initial questions if I may.
1. I am trying very hard to understand this diet and follow it. It seems so limiting to me as I was a fast food and prepared meal junkie. If I eat something that doesn't agree with me how long before I feel it? 1-2hours? a day or two? and how long will it affect me?

2. I was put on the following drugs for IC. Elmiron 2pills 2x a day, elavil 25mg, OTC benadryl 25mg. Are these the normal first try prescriptions? Any thing else I should be taking?

3. The elmiron and elavil seem to be doing a number on my bowels. Loose and watery. I already had pain in one area down there, now these pills are making a second area burn a bit and very uncomfortable too (Sorry for the grossness) What can I eat to firm things up? I hate to take yet another pill for that too. Will that side effect lessen with time?

4. I am so tired all the time. I used to take a multi-vitamin but quit when I read in my initial literature from the Dr not to take one. Is there one out there that will work? I feel like with no vitamin and such a limited food intake my body will never have energy again.

5. Is there a list of brand name foods that work? I saw the chef cookbook but I'm looking for what i can go in the grocery and actually buy. The labels are so confusing.

6. Does the prelief really work? Can I take a couple and eat cheetos or have a diet coke and feel no extra pain?

7. As time goes on will this disease get worse with time? I read here of so many on all types of strong pain meds and things they do. It scares me that I will never have a normal life again.

I have at least 20 more questions but that will do for now. I know that was long and I grateful to anyone who got this far.

Is there hope?
~Laura

[Pernie]

I am newly diagnosed as well, March 10th. (40 Years old) For the twenty questions you have I have twenty more. I almost started crying in the grocery store reading all the labels and finding that everything has either BHT, vinegar, or onions. Is onion powder ok? And what the hell is soy lecithin?

This so lame :rant:

[rosesitty]

Hi Laura - There's always hope. This is just the start of the journey for you. I've had medication-induced IC for three years. 2 1/2 of those years I had really mild symptoms with periodic rescue instills where they put the medicine (heparin, lidocaine and sodium bicarb) right into your bladder about once every two months with great success and as needed Urelle (an antiseptic) and Sanctura (an antispasmodic). I could eat whatever I wanted, just had to watch the diet soda and carbonated water...and I couldn't drink any alcohol, this was my biggest trigger. In November I developed a flare that escalated my symptoms. I was having an instill once a week and taking my meds regularly. I just couldn't get things to settle down. In January, I developed the mother of all flares on top of the flare I already have and here I am today, taking Elmiron, Urelle or Pyridium, Valium, Sanctura and fighting a yeast infection that won't go away. I've tried some alternative meds like Marshmallow Root tea and Calcium Citrate with little success. Here's some answers to the questions I can answer...
1) You may not have a problem with food. Some do, some don't. It's that way with a lot of things - everyone's symptoms seem to be a bit different, some meds work for some and not for others, and food may or may not affect you. I went on the IC Diet in November because I was trying to get back to baseline and if there happened to be any particular food irritants I'd just eliminate them. The IC Handbook is a great place to start by looking at the ok, sometimes ok and most times not ok foods. It's not as limiting as it looks. I try and eat healthy, protein, lots of veggies, some kind of carb, with safe seasoning. I also try and purchase food that doesn't have a lot of preservatives in it - especially soy (which seems to be in everything these days!) Caffeine in the forms of beverages and chocolate seem to be big triggers, as do acidic foods like tomatoes, apples, etc. and alcohol. A lot of people try the elimination diet - culling it down to the "safe" foods and adding things back in to see what bothers them or not. There are people who have found that even the "safe" foods are irritants, but they can eat other things that you'd think would cause a problem. If you eat a problematic food, it can affect you right away or have a cumulative effect. It may last a few hours or weeks. It's how your particular body reacts.
2) Elmiron can take from 3 -6 months before you actually see if it works. It's usually the first med the uros will try. There are three side effects to look for - a) GI problems, b) hair loss, c) elevated liver enzymes. Whoever prescribed your meds did a pretty good job at putting together a multi-modal approach. The Elavil usually is prescribed for pain and the OTC Benadryl to counteract mast cells. Docs usually prescribe hydroxizine (Atarax or Vistaril) instead of Benedryl. I can't take Atarax, it causes severe urine and water retention. So, I take Benedryl but don't notice much improvement. There's also instillations you could try.
3) Actually Calcium Citrate causes me constipation so that may help with the watery stools and the burning. You might try some kind of fiber supplement as well.
4) Someone else may be able to address the vitamin issue. I can't and don't take anything, although I probably should. I'm just trying to eat as healthy as possible.
6) Prelief gives me constipation and since I am religiously on the IC Diet, I don't take it, even though it's in my cupboard. ICers have varying success with Prelief. Some can eat "trigger" foods if they take Prelief, some can't.
7) I've always been told that IC wasn't supposed to be progressive...that's what most uros will tell you. However bad you are at the beginning is the worst you'll get. You'll find a broad range here online. There are some that get better with medication and instillation therapy, some go into long remissions, and unfortunately some who get worse. As I mentioned, I had mild symptoms for 2 1/2 years, now I'm afraid this is my baseline and I'm not going to be able to get back to where I was before. But...what's the alternative? It's just taking one day at a time. Controlling the IC and not letting the IC control you. You'll have a normal life again...it just may be a little different than you thought it was going to be.
There's always hope Laura. There's lots of med combos to try, the IC diet, instillations,
new treatments on the horizon. Just make sure you have a strong support system in place. It's hard for family and friends to understand what you're going through, and that's why the ic-network is such a great place. We ALL understand and can sympathize. Hope this helps. You can private message me any time you'd like.
Stephanie

[Baba Yaga]

Laura, in all probability, your IC symptoms will improve. But be prepared for a long journey as far as figuring out what meds work for you and what foods work for you. Tell your husband too that this is going to require patience.

The best thing for you, as far as cheetos and diet coke, will be to eliminate them altogether -- the IC can be a blessing in disguise as far as forcing you to eliminate or greatly limit certain things that were bad for you anyway: alcohol, caffeine, sugar, artificial foods. Stick with Evian water and pear juice and mint tea for the time being until you are stabilized.

And spend what time you can reading through the threads on the various boards here -- you will learn a lot. Anything you are curious about, you can do a "search" and post questions, like you did in this thread.

You are on your way to eventual relief, and you are in the hands of a good, caring NP (the one who dxed you) -- you will probably be spared a lot of the grief some others have known from years of ignorant or inflexible or obnoxious doctors -- and remember that according to statistics, you are eventually going to feel better.

[mlch]

ok so there is hope. Thanks Baba for letting me that. I had the feeling things would get progressively worse. I do think my poor diet has alot to do with my symptoms.

rosesitty thanks for answering all my questions. Your a dear! Calcium Citrate is that OTC. If it helps bulk things up I might try it. Do I need to ask my NP first before adding it?

Pernie, Lame is right!

~Laura

[creatingkarma]

Hi Laura! :welcome: to the ICN! Glad that you found us! When I was 1st diagnosed, I was just like you. I was reading all the posts & getting really scared. I would break down & cry in the grocery store looking for something that I could eat. I promise that it will get better! Many people's IC is controlled through diet & medication. Elmiron & Elavil are staples for many IC patients, so I think you're on the right path. I wish you the best on your IC journey. I recommend this website as a treatment also! Being able to talk to others who are going through the same thing has helped me more than anything.

[SharonA]

Hi Laura... :welcome:

What I can add to the other posts is to let you know that there is a very good chance that you will be able to live your life dispite having IC. There are so many good meds/treatments out there. You are on some of the best.

I started taking Elavil in Dec. 2001. I have been on 25mg since then. Most days are good. I feel good and have very little discomfort. I am able to do the things I want to do. I do have an occasional bad day, but it is nothing compared to when I first came down with IC symptoms. I had horrible pain every day and was pretty much house bound. That lasted several months. Then I found a doctor who wrote a perscription for Elavil. From the very first day, my symptoms began to get less and less, until I began to feel pretty normal.

Yes, I do have some symptoms, still. Every once in a while, my bladder will decide to remind me that it is still there and will fuss at me. I experience some slight burning, but I have learned what to do when that happens. I drink water, take two Prelief and take it easy. It usually goes away in an hour or two.

I am not sure if Prelief works like that for anyone else. (It is meant to be taken with the food.) I do use it if I think a food or drink will cause me problems before I ingest those things. Prelief does not allow me to go wild with the no-no foods and liquids. I pretty much stay away from those things just out of self-preservation. I don't think there is a food or drink in the world that is worth risking having a bad flare.

I am so glad you decided to post and introduce yourself. Please spend time here and learn everything you can about this disease. That will enable you to become an important part of your own health care team.

:) :) :)

[ICNDonna]

I'm very glad you found us. There's a lot of information and support here. You'll want to read the information in the Patient Handbook (link at the top of this page).

My IC was diagnosed in 1975. At first I, like you, was very upset, but I have since learned that there is life with IC. It may take a while for you to learn which foods and drinks are a problem for you and which treatment options work best, but most of us do get there --- and most of us feel good most of the time.

I think it may be the Elmiron that is causing your digestive problems. Some have found that if they empty the capsule into water and chug it down (discard the empty capsule) it's not a problem. If you try it that way and it still is a problem, you might talk with your doctor about starting at a lower dose, then gradually increasing to get back to the four a day.

Elmiron can take up to six months or more to become effective; hopefully the elavil and benadryl will give you some relief in the meantime.

The diet can be a challenge at first, but once you get used to it, it's not bad at all. And once you begin to feel better, you can begin to try some of the foods on the "bad" list --- not all ICers have a problem with all of the foods listed as potential problems. I wouldn't try sodas though. They are a problem for most of us.

The way I use Prelief is mostly when we eat away from home. It seems to work very well for me.

Another thing to keep in mind is that only a very tiny percentage of IC patients worsen with time --- and for every individual posting here that they are in pain, there are literally hundreds out there with IC who are not posting because they feel good and are busy getting on with their lives.

Sending warm, welcoming hugs,
Donna

[Kara Isabel]

HI Laura and :welcome:

I was just diagnosed a few months ago and was completely overwhelmed when I first started reading about IC, and the boards.....and became VERY uspet to read that some cases of IC qualify for disability. That REALLY scared me, still does actually. I'm a 36 year old mom, and its tough sometimes but I try to remain optimistic.

1. I am trying very hard to understand this diet and follow it. It seems so limiting to me as I was a fast food and prepared meal junkie. If I eat something that doesn't agree with me how long before I feel it? 1-2hours? a day or two? and how long will it affect me?

The diet is a bit overwhelming! I had already lost 20 lbs prior to diagnosis, just because I was in so much pain! :( You really do have to start watching what you eat and how it effects you. There are alot of bladder irritants in fast food and prepackaged food. Many of us react to preservatives and chemicals that are used in these products. Traceanne wrote a great post about diet, here's a link that may be helpful to you...

http://www.ic-network.com/forum/showthread.php?t=25218

For me, it can take 15 minutes up to 2 days to flare from foods or beverages, we are all so different and the bladders/IC just has a mind of it's own sometimes!!

2. I was put on the following drugs for IC. Elmiron 2pills 2x a day, elavil 25mg, OTC benadryl 25mg. Are these the normal first try prescriptions? Any thing else I should be taking?

Your plan sounds like a great place to start! Many people have success with Elavil in regards to helping with pain, without having to take narcotics. Some of us see improvements with Elmiron, but that could take several months. I've been on it for 2 and haven't noticed any improvements, but I am hopeful! I wasn't able to take Elavil due to terrible side effects, so I started the Atarax/hydroxyzine a month ago and it is helping with my allergies, and is beneficial to some IC'rs.

3. The elmiron and elavil seem to be doing a number on my bowels. Loose and watery. I already had pain in one area down there, now these pills are making a second area burn a bit and very uncomfortable too (Sorry for the grossness) What can I eat to firm things up? I hate to take yet another pill for that too. Will that side effect lessen with time?

I relate with you! Actually, the Elavil made me constipated, but the Elmiron has given me diarrhea! :( And it hasn't let up at all! :( I plan on talking to my doctor about in a few weeks. It is making it difficult for me to gain some weight back.

4. I am so tired all the time. I used to take a multi-vitamin but quit when I read in my initial literature from the Dr not to take one. Is there one out there that will work? I feel like with no vitamin and such a limited food intake my body will never have energy again.

I don't know! :hmm: I was taking a children's chewable vitamin, but realized it was flaring me.......so I've quit taking them. Hopefully, someone else can give you some advice on that, or you could run a search on the boards and see what turns up.

5. Is there a list of brand name foods that work? I saw the chef cookbook but I'm looking for what i can go in the grocery and actually buy. The labels are so confusing.

It varies. Your best bet is to start w/ as much organic and preservative/chemical free food as possible, and build your diet up from there. What one of us can eat without a problem, someone else may flare from it. I've noticed I can eat oatmeal, boil in a bag rice, pasta w/ a little olive oil and parmesan. Prepackaged foods hurt me! So I have been staying away from those.


6. Does the prelief really work? Can I take a couple and eat cheetos or have a diet coke and feel no extra pain?

Prelief does enable me to have a cup of coffee here or there, if I use the Starbucks breakfast blend and add a generous dose of half and half and crush a prelief to mix in it....I can drink it. I've tried taking prelief before diet coke and wine and it didn't help ONE BIT. :cussing: I think it may work for some things, but not everything.

7. As time goes on will this disease get worse with time? I read here of so many on all types of strong pain meds and things they do. It scares me that I will never have a normal life again.

I feel my IC has gotten worse over the last few years, but mainly because it went untreated and undiagnosed. Sometimes, I think I have gotten worse over the last few months because of all the exams and procedures :( I sometimes wonder if Elmiron is causing me more pain? Or maybe one of the painkillers I'm on?? Just don't know....

But don't lose hope that you will have a normal life again. It's hard, with all of the diet restrictions and medication schedule, but you grow accustomed to it and know your limits. I know physical exertion causes me flares and bladder spasms.....simple things like carrying the groceries in can lay me out on the couch for hours. So try not to push yourself! Just give yourself some time to heal.

We'll get through this all together! :grouphug:

Ask all the questions you want! Heck, I still need more answers too! lol

[mlch]

Kara, Thanks for taking the time to answer all my questions. One of my hang ups with IC is there are no set rules that are the same for everyone. I realize now I am asking for black and white answers to my ?s but darn IC isn't going to give me that. My pragmatic mind needs to let go of that. I've lost 7 lbs in last two weeks. That ok but I can't keep up that rate of weight loss. Another month like that I won't be seen behind a telephone pole. Let's see today so far I've managed to eat some lettuce sprinkled with mozerella cheese and cucumbers. That might of been a whole 100 calories and it's almost 2pm.

I tasted a diet coke the other day and I couldn't even stand the taste of it. Weird. I had been off of sodas for about a month as I had already suspected well before my dx that sodas were affecting me negatively. I used to live on diet sodas.

One thing I just read on the ICN was about cranberries. Since I thought for the last 6 mos I was having repeat UTIs I was downing cranberry tablets 5-6 at a time several times a day. Ding- the bell goes off in my head as I realize the use of cranberry tablets made my bladder go bonkers. That was the worse pain and I unknowingly did it to myself.

ICNDonna, I am going to try your sugestion to empty the elmiron in a glass of water. So it possibly the plastic capsule? But does that make the elmiron still work as it should?
Thanks very much reminding me that many of the people who are living well with IC aren't here posting. It's easy to focus on the negative stories. I definately needed to hear that!

SharonA, So elavil is for pain? I thought it was an antidepressant just to help me deal with this dx? I had no idea it would help with pain. I had been breaking it in half (hard to do with those little buggers). I didn't want to be on antidepressants as I just weaned my self of zoloft 2 years ago, after being on it for 10 years. I was put on zoloft for IBS.

Karma, It is a good thing to know that you aren't alone and reading the stories does let me know there are many options out there.

Thanks to all of you!

one more question for now: I am so very tired all the time. I can barely walk from the bedroom to the living room. What is causing my body to be so run down? Is it the IC? What can I do about it? Thanks

[Katrina]

:welcome: to the ICN!! Yes there is hope....many people improve a lot and there is always hope of remission.

1. It can vary a lot on how long it takes. Drinks are faster than solids...Some things can take over a day or two.

2. Yes. Are there other good meds, yes and some good alternatives too. Choices can depend on your symptoms...with all those antibiotics I question if burning is a problem you may want to try a probiotic. If frequency is the big thing many times an antispasmodic helps. Big things to look into is if IBS and PFD are going on too. (IBS: Irritable Bowel Syndrome, PFD: Pelvic Floor Dysfunction)
http://www.remedyfind.com/newsletter_archives/Jan_06_InterstitialCystitis.html alternative start for IC
http://www.ichelp.com/TreatmentAndSelfHelp/medsguide.html ICA treatments and Meds
http://www.remedyfind.com/hc-Interstitial-Cystitis.asp This is a link to a site with IC treatments rated by patients.

3. Elmiron's capsul is the main problem with the bowels....take it out and drink it. Also, I realize it says to take a way from food but if you still have a problem talk to your doctor...many of us do take with food and still get the help.

4. Kid vitamins help...there is a brand called "everything free" it is a good choice.

6. Yes Prelief works but how much is kind of iffy depending on how bad your doing and what it is your eating or drinking with it. I don't like risking it with drinks since to most of drinks are the hardest thing to tollerate. Prelief does add a lot of foods into my diet though. I recommend the book "Confident Choices" on diet it is in the ICN store.

7. No in most cases IC is not progressive and people improve. I have found that there are some things that can risk your bladder getting worse such as abdomenal surgeries and a lot or bad urinary infections. In most cases though things continue to improve.

20 more questions ok...np. :)

am going to try your sugestion to empty the elmiron in a glass of water. So it possibly the plastic capsule? But does that make the elmiron still work as it should?
Yes, many people do this...Elmiron (the company) knows of this problem.

So elavil is for pain? I thought it was an antidepressant just to help me deal with this dx? It is an antidepressant but it does help with pain and calms the nerves so can help the frequency too if that is the problem. There should be more info on it on the link I gave you in question 2 that is ICA's treatment guide.

What is causing my body to be so run down? Is it the IC? What can I do about it? Your good with the hard questions :) It is very likely multiple things...pain, discomfort, stress of a diagnosis like IC are all big problems that cause fatigue. Are you sleeping well? Many of us don't I gave you some sleep helps in the newbie kit I added below. Many with IC suffer from other things as well....at some point you may want to make sure your not suffering from some vitamin difficiency or chronic fatigue syndrome. Right now it is likel it is IC. Our alternative board may have more info on natural means of fighting fatigue...I know I started a thread on the subject recently.
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=11535 This is newbie kit from the oldies to the newbies

[SharonA]

Hi, again...Yes, Elavil is used to block pain. The way I understand how it works is that, in low doses, it blocks the pain receptors in the brain. I take 25mg once a day in the evening.

Go up to the top of this page and click on the link to the "Patient Handbook". Inside, you will find all kinds of information about IC and the meds/treatments that help us. I just looked there and you can find some information about Elavil in the "Living with IC - Treatments" section.

You can also do a search on Elavil or Amitryptyline on these boards to find posts about this med. Just find the dark blue box where you see all the links at the top of this page and click on "Search" and type in what you want to do a search on.

Hope this helps... :)

[rosesitty]

Here here to Sharon - yes Elavil is an antidepressant, but for IC treatment it's primary function in low dosages is a pain blocker. I've been reading it increases appetite, weight gain for many, so that may help you. Hope this helps.
Stephanie

[Shehorst]

Laura,

Thanks for posting this thread! You have received some good information that has also helped me - I am also newly diagnosed 3/3/06. I didn't know there was a newbie kit! Thanks again to everyone.

Sherry
:cat:

[Baba Yaga]

I think that elavil actually acts on IC through its anticholinergic "side effects" which relax certain involuntary muscle activities, and its pain receptor effect is secondary -- but I am open to correction.

[Pernie]

Thanks for starting the thread Laura and thanks to everyone for all your advice and encouragement (did I spell that right?). I have been crying a lot and feeling very alone even though there are people who love me and care.

Being able to communicate with others and ask questions has been very helpful and I don't feel quite so alone anymore. :bunny:

[Sher E]

I could not echo your thoughts more... Tonight my Uro called me back and suggested IC. We are going to try Ditropan XL first and see how that goes. If no improvement he mentioned Elmiron and DMSO (how do I use that?).

I sit here and wonder how this could be my life with this disease. How will I manage, why can't it go away? I don't know how it goes dormant at times and I am praying that it will this time.

The stories here are scary. The list of drugs everyone is on can make your head spin. But with that said they are all seemingly managing to live their life and enjoy it as well.

I have had a lot of support here and I'm not even diagnosed officially yet. But I do think hormones play a part as well. I just turned 41 and my hormones have been whacked out for several months now (although the tests show normal). I also had a laparoscopy last April and wonder if removing the endo on my bladder started the ball rolling. So many what ifs.

Sometimes I would love to talk to someone in person or by phone, this seems sort of like a lonely illness.

Onions seem to be ok for me. But one day I had a coke, some champagne and an orange jiuce and that did me in and set me back 4 days of feeling good. Who knows which one was the culprit or if they all were. Now I don't want to eat anything that might set it off. So far I've lost 2lbs in 4 days.

This is definitely a show for Oprah.

[BigFig]

Hi Laura and :welcome: to the ICN. Don't worry about "lurking", I did the same thing, but for longer than a week. I consider myself still a "newbie" even though I was diagnosed in late December. "Is that all? Seems like a life time..." Sorry, got lost there for a minute. I know how you feel, as does all of these wonderful people that you have found.

Looks like you have gotten alot of great info to start with. The only thing I would suggest is being careful drinking tea. I can't tolerate even the organic mint kind. Oh, and be sure to keep a diary of EVERYTHING you eat, drink or take. This will help you with finding your "trigger" foods, etc...

I also lost alot of weight in the beginning, but since my uro increased my elaval from 25mg to 50mg I have put a few back on. I also have vulvodynia, the elaval has helped with that as well as getting my HRT therapy in balance.

I know IC is overwhelming, but believe me there is light at the end of the tunnel, it just might take you awhile to see it. Believe me I still have a hard time believing that I have IC and still ask "why me"? Don't give up hope and try to get your friends and family involved. Lord knows we need their support to help us through this.

Good luck and hang in there. You have two little ones depending on you! ;)

[hurtsobad]

hi laura, I too am very angry about ic. My doctor didnt tell me any of the things that Ive found out here. I was diagnosed on 2-27-06 and I didnt know anything about ic. The more I read on here the madder and more scared I get. I have been in so much pain that I cant focus on anything else so I know how you feel right now. Every time I go to the dr. I ask questions and I hear I dont know and my Dr. is not doing any of the things that others on here are doing such as med combos, answering my questions, and knowing what hes doing. Im very mad. Im finding out today that I cant eat apples and lots of other things that I didnt know about before but the network will help you. I just look around and read everything I can because my doc is too stupid. I hope that you can find all the answers to all of your questions and good luck!!!!!!

[Nicoledenise]

I am trying very hard to understand this diet and follow it. It seems so limiting to me as I was a fast food and prepared meal junkie. If I eat something that doesn't agree with me how long before I feel it? 1-2hours? a day or two? and how long will it affect me?

From my own experience with I.C., I have noticed pain with in 1-2 hours after eating to anywhere from one to two days after eating something my bladder did not welcome. The flare can last a few minutes to a few hours to a few days. We are all different and I think it depends on what stage our I.C. is in.

2. I was put on the following drugs for IC. Elmiron 2pills 2x a day, elavil 25mg, OTC benadryl 25mg. Are these the normal first try prescriptions? Any thing else I should be taking?

I was prescribed 400mg of Elmiron daily (200mg in the morning and 200mg in the evening) and neurontin (I could not tolerate Elavil due to side effects). Neurontin is an anti-convulsant medication that is used to decrease pain levels in those who have chronic pain conditions, such as I.C.; 25mg of Atarax (hydroxyzine) I am sure benadryl will work fine, since it is an antihystamine, but you may want to discuss with your doc about switching over to atarax. Elmirone and hydroxyzine are the gold standards of treatment (in terms of medications) for I.C. You might also consider bladder instillation treatment.

3. The elmiron and elavil seem to be doing a number on my bowels. Loose and watery. I already had pain in one area down there, now these pills are making a second area burn a bit and very uncomfortable too (Sorry for the grossness) What can I eat to firm things up? I hate to take yet another pill for that too. Will that side effect lessen with time?

I would consult with your doc about this. They do have stool hardening medication out there. If push comes to shove, you can discontinue both elmiron and elavil if it becomes too bothersome, but talk to your doc.

4. I am so tired all the time. I used to take a multi-vitamin but quit when I read in my initial literature from the Dr not to take one. Is there one out there that will work? I feel like with no vitamin and such a limited food intake my body will never have energy again.

Well, there are a number of reasons why you could be so tired. Pain in and of itself can fatigue a person. Have you had other tests done to rule out other conditions like chronic fatigue syndrome or fibromyalgia? Many people with I.C. also have co-existing conditions, such as endometriosis, irritable bowel syndrome, fibromyalgia, chronic fatigue syndrome or Lupus. I.C. sdoesn't cause these above conditons, but for some reason, many people also present one of the above conditions while also presenting with I.C. I was just diagnosed with fibromyalga and I also have endometriosis.
Yes, there is a lot of controversy over whether ICers should take multivitamins or not. The research that I have done has basically said that many multi-vs have a lot of vitamin C of ascorbic acid, which can irritate the bladder and cause flare-ups. I actually see a homeopathic doctor and take homeopathic multivitamins and seem to have no problem with the ones I take. Talk to your doctor about your concerns and about maybe being referred to a nutrionist. Do you have a homeopathic doctor? If not, then this is a great time in your life to find one. And, don't get bombarded by the labels in the grocery stores. Do the elimination diet. For me it comes down to this: stay away from spicy and acidic foods. Those are my two worse enemies. Try certain things you think you can tolerate and if you learn you can't than put that food item on your elimination list and move onto the next item. It may work or it may not. Go ORGANIC whenever you can and try to eliminate PROCESSED foods. Being tired right now is normal for you. Don't worry. :)

5. Is there a list of brand name foods that work? I saw the chef cookbook but I'm looking for what i can go in the grocery and actually buy. The labels are so confusing.

See above answer as I touch upon this. Try and go for anything organic and try to stay away from processed foods as much as you can. Remember the 5 worst foods for ICers and keep that in mind when you go shopping. It's so hard for me because I love chocolate and everytime I set foot in a grocery store, it is hard for me not to buy chocolate, but I do have will power!! I love RiceDream for milkproducts (get the enriched kind vanilla flavored); Kashi makes wonderful oatmeal and cereals like Heart2Heart cereal; I pretty much stay away from anything that is heavily seasoned (I know blah blah blah) spicy or acidic. I make sure to eat fruit like blueberries, bananas (some ICers can or cannot handle) blackberries, pears and veggies.

6. Does the prelief really work? Can I take a couple and eat cheetos or have a diet coke and feel no extra pain?

Yes it does, but I have to say, not all the time, at least for me. I do have to say though that the times that I do want coffee, it works for when I want coffee. And, Kara Isabel's idea for crushing it in your coffee is an AWESOME idea. It doesn't work for cola sodas, but it works for non-cola sodas. It works for some foods, but not for all foods.

7. As time goes on will this disease get worse with time? I read here of so many on all types of strong pain meds and things they do. It scares me that I will never have a normal life again.

I.C. is a progressive disease in the sense that if left untreated, it will get worse. From my knowledge, there are three stages of IC: mild, moderate and severe. However, once treated properly, the bladder lining heals and strengthens. I.C. is a chronic disease but people can find ways to go into remissions and lead pain-free lives. I.C. is one of those conditions that wax and wanes over time. It all depends on diet, the time of the month and I even think it also depends on things like environmental conditions and allergies and other external factors.
Also, it isn't just the bladder by itself for many women that is causing the pain cycles. For many women, they have hyper-sensitized nerves in the pelvic region. I think it is known as visceral nerves. My OBGYN who has done a couple of my laparoscopies and both of my cystoscopies with hydro discussed with me that my nerves in my pelvic region (visceral nerves) are so sensitive and the pain I have is not just due to my I.C. or my endo. Viseral nerve pain can lead to crying spells, too.
I am having a rough time now with my fibromyalgia because I am having overall body aches and pains and horrible fatigue. I often find myself thinking the same thought that you do: " It scares me that I will never have a normal life again." We we will get through this. We will get through all of it, TOGETHER. I hope this information helps some.

Nicole :grouphug:

[Katrina]

I didn't notice this earlier but you may want to make sure your benedryl does not have a decongestant in it. Some do and decongestants are not considered to be IC friendly...they make me have bad flares....I sure wish that weren't true especially this time of year. :grouphug:

[rosesitty]

Nicole - no disrespect intended, but it's a disservice to say IC is not progressive. That's not entirely true for everyone. It is not usually progressive, but there are those of us who have gotten worse after our initial diagnosis. I had mild IC for 2 1/2 years, as needed Urelle, Sanctura and an occasional instill would be enough to keep me living a normal life. I had to watch the diet pop, caffeine and alcohol, but I could pretty much eat whatever I wanted. Since November that is not the case. I'm on a regular regime of instillations, taking Valium, Elmiron, Benadryl, Pyridium, Sanctura, Oxycodone...with minimal reduction of symptoms. My symptoms are SO much worse than they've ever been. It used to be just some bladder discomfort. Now it's urethral/bladder spasming and burning, urgency, frequency... I thought it was a flare, then a flare on top of a flare, now I'm beginning to think it's progressed to where I am today. I'm AFRAID that's what's happened. I'm so far away from my baseline, and I don't know how to get back there. So, I think IC CAN be progressive, not for everyone, but for some.
Stephanie

[Nicoledenise]

rosesitty,

You must have read my post before I made changes. I re-read my post after I posted it and I knew I made an error saying it is "not progressive" so I made changes. You should go back and read what changes I made to it.

Yeah, it is progressive, especially when left without proper treatment. With proper treatment, it can go into remission and people can lead healthy lives and it may not progress and get worse. But, boy if it is just left without a combination of healthy and successful treatments, yeah it can get worse. And basically, what I have said here to you in this post are the changes I made to my post.

Sorry I upset you. Didn't mean to. :)

Nicole

[Mrs. Burschman]

In my case, nortriptyline (it's like the second coming of amitriptyline) works on my nerve pain. Nothing else works like it. And nothing else makes my gain five pounds in one month. And nortriptyline doesn't have as many side effects as amitriptyline.

When I decide that I won't mind being obese, I'll go back on it. For now, I'll live with the burning urethra.

Amy (Mrs. Burschman)

[rosesitty]

Nicole - I wasn't offended :-) Even with proper treatment, sometimes it progresses. It's just a very undefinable disease. Some things work for, some things don't. For some, not for others. It's incredibly frustrating, especially when you're doing everything in your power to get better and there's no change or you get worse.
Be well!
Stephanie

[Nicoledenise]

Rosesitty,

Yes, I know how frustrating it can be. I am so sorry that it has gotten worse for you even after treatment. Yes, it can manifest itself so differently for some people. That is why I think the medical field needs to do more extensive research on I.C. However, I thank you for bringing your thoughts up to my attention. I actually appreciated that. :) It is so funny though because last night after I posted that and re-read it, I knew I had to change it. I don't know why I posted it that way in the first place. Geez and the amount of suffering I have gone through from the disease, too. Oh well, but I appreciate you bringing it up to my attention. Have a good night.

Nicole

[sandramac]

:welcome: jUST WANTED TO WELCOME THE NEWBIES, HUGS SANDRA :grouphug:

[sandramac]

:welcome: jUST WANTED TO WELCOME THE NEWBIES, HUGS SANDRA :grouphug:

[Eloise]

Katrina ~
You mentioned a kid's multiple vitamin - "Everything Free" - do you know where it can be purchased and who makes it? I would like to try it as any children's vitamins that I've tried in the past have really cause me pain.
Thank you,
Eloise

[Katrina]

Julie B http://64.62.181.133/forum/member.php?u=6 is the person that originally recommended that.....you could ask her.

[Eloise]

Thank you Katrina. I emailed Julie B.

Eloise

[BigFig]

In my case, nortriptyline (it's like the second coming of amitriptyline) works on my nerve pain. Nothing else works like it. And nothing else makes my gain five pounds in one month. And nortriptyline doesn't have as many side effects as amitriptyline.

When I decide that I won't mind being obese, I'll go back on it. For now, I'll live with the burning urethra.

Amy (Mrs. Burschman)

Hey, Mrs. B (Amy), so are you still on nortriptyline? I have been taking Elavil and have started gaining weight from it. I was on 25mg at night and then increased to 50mg and the weight starting coming on, which I don't like at all. I tried dropping the Elavil to 25mg and my pain ( I would say it's nerve pain) got worse so I had it increased again. I am seeing my GP in May and we are going to dicuss other meds, so I wanted to get your feed back, if you don't mind. You can PM me, please and thanks.

BigFig (Carol)

[curlycue]

All of you ladies are the BOMB. I am so glad I belong to this group, all this information is so valuable and its becouse of this message board that I am were I am.
THANK YOU LADIES I dont know what I would have done with out you. You are in great hands here.

[mom2kk2006]

I am new too. Welcome. It looks as though you've already been given soooo much great advise, everyone has been so wonderful to me too. I feel the same way as you as well, like the worlds come to an end etc. I am actually going to a Neurologist Monday to make sure everything is ok because stress has taken a huge toll on my body over this. I agree with everyone about the diet.. the advise I was given is to follow column one of the diet for at least 6 weeks, pop and cheetos are bad but Lays potatoe chips plain were recommended to me and are fine because the only ingredients are potatoes, oil and salt. I have really taken a liking to Tapioca pudding for a treat as well as Breyers French Vanilla Icecream seems to have no bad ingredients either. I have also spoke with a dietician and said to avoid anything with Benzoates in it and Citric acid. I felt the same for the first few weeks, didn't know what was flaring and not because I never felt any different, I then tried toast that I shouldn't have and I was peeing every 15 minutes again so I knew that was bad. I was also told vitamins are bad so I'm at a standstill there too. I am on Elmiron as well and it apparently takes weeks so just keep plugging along. I am on Perideum as well but that's it. The big key everyone says is diet and I was the same as you, didn't have a clue where to start and then you just kinda figure stuff out. I've bought buckwheat pancakes for breakfast and have them with brown sugar and organic rice pasta noodles etc. I feel much better with the diet and it's been 3 weeks+. I don't know about the prelief because I am trying to get some but having a problem because I live in Canada. I am having exceptionally soft bowel movements as well, I have gone to the doctor about it because it's not at all what I am used to and he told me that it was good and to keep them soft like that. He said it was healthy. Good luck with everything and I know where you are coming from believe me. I am a walking wreck right now. Take Care. :welcome:

[kadi]

Hi Laura,
The others have given you great answers - all the things I would have said myself!
Just wanted to give you another word of assurance though, that it is possible to be very sick with IC, and then get better. I was and I did.

When I first got IC, I was in the bathroom 50+ times a day, completely unable to sleep more than 15-20 minutes at a time, lost a pound a day for two weeks straight (due to nausea caused by pain), could not wear pants, could not exercise, barely made it to work, could not drive more than 20 min...

I want to offer you hope. IC is a devastating illness, but not an untreatable one. It takes patience and perseverance to make it through the "trial and error" process of finding your own personal "IC diet" and treatment combination, but it IS worth it.

Since then, I have found my personal combination of treatments (see below my signature) and have returned to most of my prior life. I work full time, take classes, can exercise, can do moderate travel (I stay in places with kitchens so I can continue the diet away from home), drive several hours if I want to, wear jeans, go on short hikes, and sleep through the night most days. I have had IC for almost 3 years, it has not gotten worse. I still have occasional flares, but most of my days are good!

It sounds like you were very fortunate to find your nurse practitioner. The Elavil, Benadryl, and Elmiron are what most doctors familiar with IC start their patients on.
The Elavil helps with nerve pain, nocturia (frequent urination at night), and overall frequency. The Benadryl (or Atarax, another antihistamine) reduces the irritating chemicals (histamines) that the "mast cells" in the bladder release. The Elmiron is believed to re-line the damaged bladder lining. These are the 3 first-line oral meds for IC. Hang in there with the diet, it often takes a month or so for symptoms to calm down.

The "new patient kit" for sale in the ICN store is very helpful & includes a cookbook, IC treatment manual, and a book written by an IC patient on self help strategies.
You might find it useful, in addition to the web resources Donna mentioned.

Sending a hug & wishing you better days very soon!

[kadi]

Do you have a Trader Joe's near you? (West Coast chain of grocery stores)
If you do, I can send you a list of "usually safe" for us foods that you can buy there:)

Other grocery stores that people like are: (depending on where you live)
Fresh Market
Whole Foods
Bread & Circus
In Vancouver, BC, I liked "Capers" - an organic store

Unfortunately, these stores are all rather expensive, but hey, I figure I'm saving $ by not eating fast food, and the better my diet, the less meds & doctors visits. (And I'm all for that!)

[curlycue]

Hi Kadi,
Hey how much heparin do you use!

[kadi]

10,000 units, mixed with 10cc Marcaine, 5cc Sodium Bicarbonate, 30cc Sterile water.
Hold for 50min to 1 hour.
About 4x a week, when doing well. Lately, almost daily. Grr.
Spring allergies? Stress?

How are you doing? PM me, ok?

[pabbey]

Since you all seem to know what you're talking about, I have a question that I can't seem to find the answer to by searching through the endless amount of information on the subjects of IC and Endometriosis. My urologist told me (after a cystoscopy and hydrodistention) that I have IC about 5 months ago. The only symptom I have is (sometimes horrible) urethral pain and pain during urination. I recently went to a gynocologist for my annual and he said that I could have endometriosis because I have IC pain at times. He wants to do a laproscopy but my urologist isn't sure I need it since the hydrodistention seemed to work pretty well and I've been having lots of good days lately. I do not have pain with my period. Can someone help? Should I get a laproscopy? I don't want to be infertile!!!!!!!!!

[curlycue]

pabbey,
I am such a chicken when it comes to doing any kind of follow up stuff if you had the cysto,hydro and you are doing well Dont mess with anything for right know.