newbie kit from the oldies to the newbies

[Katrina]

newbie kit from the oldies to the newbies

--------------------------------------------------------------------------------

Once upon we made this list as the best newbie advise. It is collective list from some of the old timers here. Please feel free to post your great advise!


• Sit on an IC Chair Cushion - http://www.icnshop.com
• Change your multi vitamin to a kid vitamin (everything free) and beware of vitamins hurting
Where looser clothing http://www.ic-network.com/handbook/slfhlp.html#clothing
• Its best to use plain white, unscented toilet tissue and to wear cotton underpants
• Bath only in water and be careful about what soap you use IC friendly soap
• Bring an IC pain relief kit with you wherever you go IC kit
• Always use lubrication! There is some available at ICN store. Lube
• http://www.ic-network.com/forum/sho...ed=1#post183302 Jen's thread of great tips to avoid pain during/after sex http://www.roadtoslainte.blogspot.com/ more sex help
• Drink lots of water bottled water…avoid mineral water esp. w potassium
• Spending reasonable amounts of time here at ICN...don't replace the real living for the cyber life...but check in often for advice and support.
• Always keep your sense of humor!!!!
• Dr. Moldwin's book The IC Survival Guide
• patient handbook http://www.ic-network.com/handbook/
• Keep trying - if one medicine or treatment doesn't work so well, just move on to the next. If one doctor won't let you try this medicine or that one, go to another doctor if you can.
• Plan bathroom breaks in when times are real busy or traveling. (The idea is don’t force yourself to hold it that can harm you)
• Ask Doctor for a disability parking sticker so you can get to those bathrooms faster.
• Check out the ICN store for IC safe foods, relaxation tapes, alternative treatments….and so more! http://www.icnshop.com/
• Get the best doctor you can ICN AMA the leader of support group in your area may be able to help you with this as well. Support ICA also has a list you can ask for
https://www.ichelp.com/AskTheDoctor...anregistry.html ICA ask sign up for their physician list
http://www.ic-network.com/md/doctorlistings.html ICN's physican listing
http://www.orthoelmiron.com/html/el...finddoctor.jspf find a doctor
• Flares may be because of: stress, food, food allergies, certain vitamins, nasal allergies, fumes, over working yourself, exercising wrongly or too much, sex, gas, hormones, yeast infections, bacterial infections, smoking, car rides, viruses or being sick, being over tired, treatments affecting you badly, test affecting you badly, surgeries, baths of more than just water (or just the water if your tap water isn’t friendly), temperature or weather changes, diarrhea or constipation, hunger or over eating, and many other things. Some things you can help lesson or prevent…some not. If you are flaring there is a lot you can do Katrina’s collective list of pain treatment ICN ICN’s survey from patients
• IC friendly treatment for colds: Breathe Right Nasal Strips
Breathe Right Vapor Shot cup (you drop a tablet in & inhale the vapors)
Vicks VapoRub, tons of rest, Alavert Allergy, Afrin No Drip Severe Congestion spray, Hot pear juice with honey (soothes cough),
Ricola regular herb drops (no colorants, use sparingly),
Lots of hot showers, Homemade chicken soup,
Johnson's baby vapor bath (has eucalyptus & menthol in it),
Migraine Ice patches to stick on forehead for headache
warm compresses on forehead & cheeks, Colostrum is mothers first milk...It has all the nutrients needed for a healthy and strong immune system. The Colostrum that is sold in the stores is from bovine. You can get it at any health food store. Again, not every one can tolerate it...we are all different,.
Garlic
Also...try some HONEY. It has so many "healing" effects in it and it's so soothing when you have a cold. drink honey (warm) water.
• Biotin is something that can help with hair loss if you had some from Elmiron. Sometimes stopping and restarting Elmiron may also help.
• There are non prescriptions herbs that can helps you sleep….please talk to your doc before adding any herb or vitamin but since many of us struggle with sleeping having some remedies on hand can help. Herb list: catnip, Melontin (avoid ones with B vitamins), Valerian, Chamomile, Hops, Lemon Balm, Peppermint, Self help: warm milk, chamomile tea, Exercise regularly, but not within two hours of going to bed. Sleep in a well-ventilated room. A relaxful warm bath is helpful. Avoid things too stimulating close to bedtime. Sex is always helpful if you can tollerate it. Full body message really helps but in doing to yourself ears and forehead…facial area message is the most efficient. Self hypnosis can help. I enjoy trying to remember a peaceful dream I have had and focus on the picture as I breathe deeply and in rhythm in and out…
• If you take Elmiron and suffer from stomach ach try taking it without the capsule. If you have Hair loss try stopping it for two weeks and starting again. ROSEMARY also called Rosmarinus offiicinalis is an herb that can help with hair loss and upset stomach.
• It's best to use plain white, unscented toilet tissue and to wear cotton underpants
• Also, if prone to infections, it's best to take showers instead of tub bathing.
• If a car ride is bothering you try slowing down. Try sitting on an IC pillow available in the ICN stop ic pillow
• Friendly helpful Coffee: Teeccino: Caffeine-free Herbal Coffee is a blend of herbs, grains, fruits and nuts that are roasted and ground to brew and taste just like coffee. Coffee lovers are attracted to Teeccino's full-bodied, dark roasted flavor and its nutritious health benefits. Available in 7 delicious flavors including Vanilla Nut, Java, Mocha and Hazelnut. With 65 mg of natural potassium in each cup, Teeccino is alkaline and helps reduce acidity.




The Links for Help with IC Situations


http://www.ic-network.com/forum/showthread.php?t=9858 this link has a list of work at home ideas

http://www.remedyfind.com/hc-Interstitial-Cystitis.asp huge list of treatments for IC and some people’s opinion of them

http://www.ic-network.com/lowincome/ the place to go for links to organizations that support people of low income

http://www.painfulbladder.com/
A guide to the best IC resources

http://www.ic-network.com/forum/showthread.php?t=7562
Pain relief

http://www.ic-network.com/handbook/
has essential info on IC

http://www.dmso.org/
info on DMSO

http://www.orthoelmiron.com/ http://ic-network.com/forum/showthread.php?t=10665 Elmiron side effects
info on Elmiron

http://www.ichelp.com/AskTheDoctor/search.html
getting that 2 or 3 opinion from doc right away

http://www.akpharma.com/prelief/preliefindex.html places to get Prelief, acid in food list


http://www.ichelp.com/cafeica/Vol05No02.html Many products to help you live the life with IC…information on the products.

http://www.icnshop.com/ there are IC friendly things such as alternatives, soaps, foods, books, and many other things. It is a good place to take a look at. Also has Julie’s book “Confident Choices” on helping with diet and finding your triggers.


http://www.ic-network.com/icchef/ online cookbook IC

http://www.ichelp.com/AskTheDoctor/search.html you can post questions to IC doctors or look at the already answered questions.

http://www.ic-network.com/forum/showthread.php?t=25908 alternative start thread (written by me

[Cricketmk3]

The greatest comforts for me are:
Heating pad (#1 comfort!)
Using lubrication when necessary
Drinking lots of water
Diet and meds, of course

[Betsie]

Great idea Katrina...

Sometimes we get so comfortable here, we forget how terrified we were with our first post.

My #1 suggestions to newbies:

ACCEPTANCE of IC, makes it far easier to help yourself, fighting it is our first line of defense, but the stress involved, is in my opinion an added component to the discomfort....though I do know this takes time.

Spending reasonable amounts of time here...don't replace the real living for the cyber life...but check in often for advice and support.

Always keep your sense of humor!!!!
************************************************
Something else I would like to see here. As far as helping newbies, I think quick links at the top of the message forum would be so helpful. Jill and I had talked about Dr. Moldwin's book possibly put in an icon link, as it is often the first thing we recommed.

I also think there should be the URL link to the patient handbook as well, as so many of us refer newbies here first...not everyone here, knows the link or how to copy/paste to provide it. :help:

Just some ideas, re: the boards....probably not what you are asking, but an opportunity to throw it out there. :)

[ICLori]

Trying the IC diet is very important, as it may very well lead to significant improvement of symptoms.

Keep trying - if one medicine or treatment doesn't work so well, just move on to the next. If one doctor won't let you try this medicine or that one, go to another doctor if you can.

A heating pad, hot bathtub, and hot water bottle can be your best friends when you are flaring.

Blessings, Lori

[vm]

You guys have pretty well covered it. :)

[work it]

I drink LOTS of water and after my very hot bath I will then use an ice pack. I feel so numb and "froze" for the moment that it gives me a little releif. I sleep with a heating pad or corn pillow and that always feels good.

[Katrina]

Thanks for your ideas. I know I planned bathroombreaks in a lot.....I got a parking sticker so that I could get to that bathroom right away. Keep the ideas coming!

[Katrina]

Baskcially I am also thinking of a list of when this happens do this kind of things. You know we often get a lot of the same questions because it is the same things that newbies often go through.....granted the handbook covers some of that but I know as a newbie the handbook was a lot of info to go through when scared...thank you everybody!

[Katrina]

• Sit on a Pillow ic pillow or http://www.new-pattern.com/
• Change your multi vitamin to a kid vitamin (everything free) and beware of vitamins hurting
Where looser clothing http://www.ic-network.com/handbook/slfhlp.html#clothing
• Its best to use plain white, unscented toilet tissue and to wear cotton underpants
• Bath only in water and be careful about what soap you use IC friendly soap
• Bring an IC pain relief kit with you wherever you go IC kit
• Always use lubrication! There is some available at ICN store. Lube
• Drink lots of water
• Spending reasonable amounts of time here at ICN...don't replace the real living for the cyber life...but check in often for advice and support.
• Always keep your sense of humor!!!!
• Dr. Moldwin's book The IC Survival Guide
• patient handbook http://www.ic-network.com/handbook/
• Keep trying - if one medicine or treatment doesn't work so well, just move on to the next. If one doctor won't let you try this medicine or that one, go to another doctor if you can.
• Plan bathroom breaks in when times are real busy or traveling. (The idea is don’t force yourself to hold it that can harm you)
• Ask Doctor for a disability parking sticker so you can get to those bathrooms faster.
• Check out the ICN store for IC safe foods, relaxation tapes, alternative treatments….and so more!
• Get the best doctor you can ICN AMA the leader of support group in your area may be able to help you with this as well. Support
• Flares may be because of: stress, food, food allergies, certain vitamins, nasal allergies, fumes, over working yourself, exercising wrongly or too much, sex, gas, hormones, yeast infections, bacterial infections, smoking, car rides, viruses or being sick, being over tired, treatments affecting you badly, test affecting you badly, surgeries, baths of more than just water, temperature or weather changes, diarrhea or constipation, hunger or over eating, and many other things. Some things you can help lesson or prevent…some not. If you are flaring there is a lot you can do Katrina’s collective list of pain treatment ICN ICN’s survey from patients
• IC friendly treatment for colds: Breathe Right Nasal Strips
Breathe Right Vapor Shot cup (you drop a tablet in & inhale the vapors)
Vicks VapoRub, tons of rest, Alavert Allergy, Afrin No Drip Severe Congestion spray, Hot pear juice with honey (soothes cough),
Ricola regular herb drops (no colorants, use sparingly),
Lots of hot showers, Homemade chicken soup,
Johnson's baby vapor bath (has eucalyptus & menthol in it),
Migraine Ice patches to stick on forehead for headache
warm compresses on forehead & cheeks, Colostrum is mothers first milk...It has all the nutrients needed for a healthy and strong immune system. The Colostrum that is sold in the stores is from bovine. You can get it at any health food store. Again, not every one can tolerate it...we are all different, I just thank God I didn't flare from it and it helped me.
Garlic
Also...try some HONEY. It has so many "healing" effects in it and it's so soothing when you have a cold. I drink honey (warm) water.
• Biotin is something that can help with hair loss if you had some from Elmiron. Sometimes stopping and restarting Elmiron may also help.
• There are non prescriptions herbs that can helps you sleep….please talk to your doc before adding any herb or vitamin but since many of us struggle with sleeping having some remedies on hand can help. Herb list: catnip, Melontin, Valerian, Chamomile, Hops, Lemon Balm, Peppermint, Self help: warm milk, chamomile tea, Exercise regularly, but not within two hours of going to bed. Sleep in a well-ventilated room. A relaxful warm bath is helpful. Avoid things too stimulating close to bedtime. Sex is always helpful. Full body message really helps but in doing to yourself ears and forehead…facial area message is the most efficient. Self hypnosis can help. I enjoy trying to remember a peaceful dream I have had and focus on the picture as I breathe deeply and in rhythm in and out…
• If you take Elmiron and suffer from stomach ach try taking it without the capsule. If you have Hair loss try stopping it for two weeks and starting again. ROSEMARY also called Rosmarinus offiicinalis is an herb that can help with hair loss and upset stomach.
• It's best to use plain white, unscented toilet tissue and to wear cotton underpants
• Also, if prone to infections, it's best to take showers instead of tub bathing.
• If a car ride is bothering you try slowing down. Try sitting on an IC pillow available in the ICN stop ic pillow
• Friendly helpful Coffee: Teeccino: Caffeine-free Herbal Coffee is a blend of herbs, grains, fruits and nuts that are roasted and ground to brew and taste just like coffee. Coffee lovers are attracted to Teeccino's full-bodied, dark roasted flavor and its nutritious health benefits. Available in 7 delicious flavors including Vanilla Nut, Java, Mocha and Hazelnut. With 65 mg of natural potassium in each cup, Teeccino is alkaline and helps reduce acidity. For more information, please visit www.teeccino.com




The Links for Help with IC Situations


http://www.ic-network.com/forum/showthread.php?t=9858 this link has a list of work at home ideas

http://www.remedyfind.com/hc-Interstitial-Cystitis.asp huge list of treatments for IC and some people’s opinion of them

http://www.ic-network.com/lowincome/ the place to go for links to organizations that support people of low income

http://www.painfulbladder.com/
A guide to the best IC resources

http://www.ic-network.com/forum/showthread.php?t=7562
Pain relief

http://www.ic-network.com/handbook/
has essential info on IC

http://www.dmso.org/
info on DMSO

http://www.orthoelmiron.com/
info on Elmiron

http://www.ichelp.com/AskTheDoctor/search.html
getting that 2 or 3 opinion from doc right away

http://www.akpharma.com/prelief/preliefindex.html places to get Prelief, acid in food list

http://www.drugstore.com/default.asp?catid=60

http://www.ichelp.com/cafeica/Vol05No02.html Many products to help you live the life with IC…information on the products.

http://www.icnshop.com/ there are IC friendly things such as alternatives, soaps, foods, books, and many other things. It is a good place to take a look at. Also has Julie’s book “Confident Choices” on helping with diet and finding your triggers.


http://www.ic-network.com/icchef/ online cookbook IC

http://www.ichelp.com/AskTheDoctor/search.html you can post questions to IC doctors or look at the already answered questions.

[Katrina]

Repost

The list has been greatly updated...what do you think?

[Katrina]

Repost....greatly updated list. The atachment version has more links within the list.

[ICNDonna]

Should we be telling newbies that it's best to use plain white, unscented toilet tissue and to wear cotton underpants?

Also, if prone to infections, it's best to take showers instead of tub bathing.

Donna

[Dixiefireball]

i think the updated list is great I also think Donna's idea would be good to add too.
Katrina you have done a wonderful job!!!
Rhonda

[Katrina]

Thanks Donna!!!! I get a lot of great advise from watching your posts!
Thanks Rhonda for the compliment....it means a lot to me!

[Katrina]

Repost updated list

[gwynnie]

wonderful job you did there katrina.. love you to bitssssssssssssss

[dawnmarieR]

Thank you everyone!!!!!!!! I have never heard of anyone or met anyone with IC so it is nice to know, and very important to me...........

[Katrina]

I'm thinking important info: decongestants, aspiren, and Ibuprphen are all acidic and may cause flares...watch out! :grouphug:

[SusieQ045]

thanks for all the information from the both of you.......it has been a blessing

[Vampireness]

This is a really great post, Katrina!!!

Awesome!!!

[colourmetwice]

the military would take it into consideration.

*Barracks have showers, not baths.
*Because I live in the barracks, I have to eat at the galley--all processed food. I think I can eat salad, rolls, and Jell-O. I've unhealthily lost 15 lbs.
*Our uniforms are perfect setting for maximum discomfort.
*They tell US when to use the bathroom (i.e. 3-6 hour days standing on the flightline doing waiting for planes).
*We're always in a stressful situation.

How can we make the military more understanding of our situtation? Is there a way to contact someone higher up and make them more aware?

[trinklebell]

thank you so much for this information!!! i just joined this site today. I was diagnosed with ic two weeks ago, w/ endometriosis over 2 years ago, and IBS over 5 years ago. i'm sure all of this info will help me alot with easing my symptoms. thanks again!

-trinklebell

p.s.
if anybody has any advice on how to make following ic dieting rules any easier, i would greatly appreciate the info. (my sis is allergic to pork, chicken, shellfish, and every meat besides beef,duck, and turkey and she has a bunch of other allergies too, so i know my mom would like some help in figuring out how to incorporate these new dieting rules too.)

[Katrina]

http://www.mealsforyou.com/cgi-bin/home recipies search place
http://www.ic-network.com/icchef/ online cookbook IC

Some basic tips that it is probably hardest to tolletate things in liquid form. Calcium, milk, and the white of eggs are natural antacids and may mak it easier for you to tollerate other things. You need to learn your own triggers so test out foods....usually at least 3-5 days a part so that you can better know what bother you and how much something bother you.

[littlemama]

Thanks for sharing...I went to the Dr .Fri.He is treating this as IC (have the symtoms big time..so I need all the info I can get..Thanks again...littlemama
:help:

[DC4ever]

I have recently been diagnosed with IC. They have me on Elmiron and Toradol. Life has never been easy but this by far is the most frustrating. I find myself withdrawing from people because no one understands the pain. There was a month of doctors, all with different opinions on what it is and what to do about it. I have been on vicodin and narco for weeks but the latest doctor says the narcotics will only make it worse but it was the only thing that took the pain away. She put me on the Toradol but it doesn't seem to be helping but for a little while and then the pain is back. She also said she can only keep me on it for a week and so then what??? Deal with it? Any suggestions from anyone would be helpful.

[Katrina]

:welcome: to the ICN!
Are you on the IC diet?
Have you tried anything like pyridium which comes non presciption as AZO standard and Uristat?
Prilosec OTC?
The most highly recommended treatment by experts these days is RESCUE INSTILLATIONS that can help give your Elmiron a head start since Elmiron take quite a while to obsorb enough to help.

I suggest everyone consider that more than IC may be contributing to your pain. Very common illnesses that often make IC pain worse are 1 Irritial Bowel Syndrome (IBS), and Pelvic Floor Dysfunciton...there are others as well but those are the two really big ones.
tients.
http://www.ic-network.com/forum/showthread.php?t=25908 alternative start thread
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.

You are not alone...it is true other people that aren't dealing with what you are going through...can't understand. It isn't their fault that they can't understand....the most we can ask is for them to at least put in a good amount of effort to. Even us (fellow IC patients) don't go through the pain and suffering the same way.....but we are better able to understand than most. We are hear for you when you need a friend to lean on.

:grouphug: Feel free to ask any questions or just PM me to vent...your not alone :grouphug:

[india]

Well i am in the military as while and yes i do undertsand about the eating situtation that is why i put in a request to get BAS and I buy my own food. Show them your diet and they should understand.the military would take it into consideration.

*Barracks have showers, not baths.
*Because I live in the barracks, I have to eat at the galley--all processed food. I think I can eat salad, rolls, and Jell-O. I've unhealthily lost 15 lbs.
*Our uniforms are perfect setting for maximum discomfort.
*They tell US when to use the bathroom (i.e. 3-6 hour days standing on the flightline doing waiting for planes).
*We're always in a stressful situation.

How can we make the military more understanding of our situtation? Is there a way to contact someone higher up and make them more aware?

[Katrina]

:welcome: to ICN India. It is beautiful to see a newbie trying to help others with their first post... is sure hope it works! :grouphug:

[ads]

I was reading the section for cold treatment and noticed "Alavert Allergy" was listed, which is the same as Claritin but in a different pill delivery. (The pill disolves in ones mouth vs. swallowing it.) After getting IC I couldn't take any antihistamine or decongestant without increased pain and urgency. I tried Alavert and didn't find it to be any less easy on the bladder than other antihistamines. Perhaps, I am just a strange one who gets every side effect from allergy pills. Is there something special that allows ICers to take Alavert and not have it affect the bladder?

This is an interesting subject because my allergies have turned into allergic asthma because I can't take the allergy pills any longer. Inhalers are no fun!

ads

[colourmetwice]

Well i am in the military as while and yes i do undertsand about the eating situtation that is why i put in a request to get BAS and I buy my own food. Show them your diet and they should understand.


My command said no way at first, then I got my doctor to write a note pleading my case saying flat-out that I cannot eat the food there...my command approved it...waiting for base CO to approve...

[Kherstin]

I am new to the site, but one thing that helps me a LOT is I drink a Neutralizer every day. You can pick it up at any health food store, and it basically neutralizes the acids in your bladder (if I have pop, I will drink a glass of water with neutralizer in it right after, and don't get as may flares).

[GoldSeraph]

Hi,
I'm very happy to have found your support site. Because I really need it. It's really hard to be your own advocate when you feel so sick and weak. So I thank you all for sharing your personal experiences so that I might learn more and help myself.

It's been a very long road for me to find out what is wrong. Along the way, I've found out that I have fibromyalgia, GERD, sleep apnea, Hepatitis C, Hypothyroidism, nerve pain, chronic constipation and now more than likely IC. All in a seven year period. I've just had a test to see if there were any abnormalities with the way my bladder functions and they said it was normal. I show no bacteria just some blood and I have lots of pain. Not pain while urinating or after....just chronic pain in the bladder area. It seems to have gotten worse during the last year. I wasn't really aware of the extent of it because they have me on Tramadol for the fibromyalgia. Until recently I ran out and it was the weekend with no refill. I developed such pain there with chills that I had to go to the ER. Right now, I'm proceeding further from that incident.

All my other aliments are under control and this is the last thing that I am left with and I can tell you it has left me almost nonfunctioning. No one seems to understand what I'm going through, but I know that you all will. Which brings me some much needed comfort.

So I'm be around, going through everything and getting ideas. Also sharing with you all anything that works for me.

Thanks for having me!

[tulipgirl]

Hello there,
First of all thanks for having this web site, I have been reading all kinds of info and reading everyones ideas and stories and it is so nice to know that there are others that have what I have. I was starting to feel it was all in my head because I would go to this doctor and that doctor and they would either say the Urinalisis came back negative and I would insist on the pyriduim to help the pain and then take the macrobid also. I have had to have a hysterectomy because back in 1996 I had endometriosis so they took everything including my appendix. I have been to so many doctors over the years and on so many differnt medications and all they did was make me have nausea. My what I thought were bladder infections were getting more and more often, I would just get over one and then bam here would be another. I have had several tests over the years, they filled me up with fluid and made me pee and stop and pee , they filled my bladder with some dye , they snipped a sample, they did a balloon test on me they also took a flat scan xray, they did a ultrasound and all of this is very expensive because I don't have insurance. Anyway the last time I had a bad flare up was 2 weeks ago on a Saturday I was just thinking I was going crazy in pain, sweating and nausea, urethra felt like someone had a blow torch in it constant, peeing all the time if I would have had insurance I would have had my husband take me to Hospital. Instead I toughed it out and used my emergency supply of pyriduim but that did not even help this time. So I made my mind up that I would get to the bottom of this pain once and for all I HAD HAD IT !! I was sick of being sick. I went to 3 more doctors in a week and 1/2 and non of them could find anything fianally I went to a 4th doctor and she was another urologist in Seattle Virginia Mason Hospital, but she was not like all the others I had seen over the last 28 yrs . She really took her time and took all my history and asked so many questions and finally she examined me and told me I have IC and told me it was a uncureable diesese and that scared the heck out of me but she told me that alot of it had to do with diet and I would get to feeling better, maybe not all the way back to my old self but I would be better than what I was. I was so happy she knew what I was discribing to her all my symptoms as she asked questions and I was excited because she was asking me stuff that I thought hey she knows what I have been feeling like and where I was having pain and that it was real and not in my head. So I started to cry of course because that is what I do when I am happy and I gave her the BIGGEST HUG because for once I felt someone GOT IT ! So she put me on elmiron 3 x a day, and oxybutynin 3 times a day and , lidocaine when needed for pain down there, and also estrace hormone because I was so low on estrogen. She also told me about your web site and told me to go on line and read everything I could read and she hooked me up with a support group that meets once a month so I will start that next month. I got on line and found several good books I ordered to help me understand this IC even better. I have totally changed my diet, I thought all these years I was a pretty healthy eater but I have found out that I was eating so much fast food and out of the box food that is laced in chemicals. Now I am just starting my second week on the IC diet of just the stuff that definitely will not upset your bladder, I don't want to add any thing that might cause a flare yet. I have been feeling alittle better and atleast I am off the couch. I still get really tired and have that stabbing pain constant on my lower left side and the constant peeing even 2 times a nite and my urethera has small flares even on the very strictest diet but I am not going to add anything that might make it worse. I will experiment in a few weeks to see what makes me flare and what doesn't. I do have a question what type of vitamins can we take I went to the health food store today and ended up not getting any vitamins because I wanted a multipal and there are non without vitamin B and C does anyone have any brand name that they use that does not cause flares? Well thank you for letting me join in on your website. I hope some of you other girls were diagnosed sooner than I was that is crazy to suffer all those years and all the differnt doctors that do not even no about IC. It is just so unfair, they make you feel like you are crazy. Well I am glad I now have others I can talk to and they can relate. Please excuse my spelling.
Thanks for letting me tell my long wind bag story.
God Bless you all
Connie

[GoldSeraph]

Hi y'll,
Just stopped by to tell you that it's official...after years of dr.s ignoring my complaints and a host of other medical problems in addition, I have found a GYN that understood my symptoms and diagnosed me within three weeks. We skipped the cystoscope and went right to the filling of the bladder with two different liquids. One being saline and the other potassium that would induce a feeling of what I have. I immediately reacted to the potassium, which he greatfully did not put much in and he reversed the symptomology immediately. I was put on Elimon 2, 2x a day and given a starter kit to study with diet tips, etc. That was just two days ago...and already, believe it or not, today was not a very bad day. Mind you, I am still exhausted and do wake up at night to pee and have some discomfort with back pain and also...leg and feet pain. It seems if the bladder is flaring badly, I get the leg pain and feet pain, as well as all the areas of the pelvic region and lower back. So right now I am on tramadol 2, 2x day, elimon and synthroid. I'll keep in touch with any updates or ideas...as well as checking what y'll are suggesting too.

Thanks for being here!

[GoldSeraph]

Hi there,

Gosh, you are such a strong lady! My situation is not nearly as bad as yours but for the short time I had the actual bladder pain...it was horrible. I have fibromyalgia, which seems to be one of the common threads to Interstitial cystitis. After being on Elmron for one month, mostly all of the pain, etc is gone. But I tell you something very curious, which is why I am responding to you, is that two days ago my fibro was killing me and I took 1,200 mgs of ibprofen. Something I never take because the tramadol does the trick. Well, my bladder went into such a tither! Wow, talk about pain and all the old symptoms came back. I told my gyn about it and he said it would make sense that the ibprofen would do that because it destroys the stomach's mucus membrane, why not the bladder's? What I am trying to get across to you is to be aware of all the meds you are taking. And I'd try to get off of all of them eventually. I was on a total of 10 or 12 different meds during the course of my saga....now I am only on three. Also, I stick with the recommended diet. Thanks for all your tips! And good luck to you. I hope that others will respond with some helpful things for you. I'm wondering if removing your bladder is an option? Just a thought. And if it would get rid of all your pain, etc.

[severa marandus]

hi everyone
I am Severa two weeks after my wedding i started having symptoms you can only imagine the fastruation. I am seeing my uro in a week to discuss cysto results I am really nervous but i trust God. I had alot of flares because I had several back to back uti's and the antibiotics gave me yeast infections. My hubby and I want a baby but I wonder if I can be a good mom with this. I just want to talk to some who can relate literally

[tizib]

Hi there Severa,
Hang in there. I am the proud mom of a now 3 year old and I have to say being a mom helps me a lot. Just focusing on somebody else makes me feel better. Yes, right now I am in pain all the time but I know this will pass as I have experienced remission before. And strangely enough one of the flare-free times was during my pregnancy. So, yes there is HOPE for the mommies!

[asclerk]

Hi Katrina,

I just found this site and have just started reading. My story sounds alot like some people on here. I was just diagnosed with IC. I have no pain at all...just a feeling that I'm going to pee at any moment. Now this feeling doesn't last all day, mostly in the morning. I'm just not convinced that this is what I have. They did the bladder distention procedure and a cystoscopy. The dr. said the findings are consistent with IC. But I have NO PAIN, no burning, it's not even an urgency feeling, more like pee will fall out if I don't sit on the toilet. Does that make any sense? I also wanted to know if anyone has this symptom: I feel an ache in my vaginal area, like up inside of me. If this is normal, why pain in the vagina? It sort of feels like the first time you've had sex after not having it for awhile, but the feeling might last all day then again not have that feeling for several days. HELP!!

[tizib]

hi there,
your symptoms are very typical and you are lucky not to have pain. You might have also vulvodynia, a condition that is often seen in IC patients and gives you more suprapubic and vaginal pain. Treatments for vulvodynia are similar to those for IC and the diet for vulvodynia focuses on eliminating all the foods with high oxalates in addition to the standard irritants. You can read about it and learn how the diet can be helpful!

I hope you get better soon
tizi

[asclerk]

Thanks for responding so quickly. Where can I find the diet that seems so helpful to everyone? I'm almost afraid to look at it.......probably everything on it is a favorite of mine!!

[ads]

You also might consider pelvic floor dysfunction (PFD) on the vaginal pain. I have it exactly as you described. PFD can cause frequency urgency as you described. Dr. Modwin's book (sold in the ICN shop and in some book stores) has a lot of information on IC as well as pelvic floor dysfunction. You can have PFD and not IC or even VV and PFD without IC. Not all doctors know how to diagnosis pelvic floor dysfunction, so you might take a look at the ICN's doc list and call the support group nearest you to find the best doc.

ads

Hi Katrina,

I just found this site and have just started reading. My story sounds alot like some people on here. I was just diagnosed with IC. I have no pain at all...just a feeling that I'm going to pee at any moment. Now this feeling doesn't last all day, mostly in the morning. I'm just not convinced that this is what I have. They did the bladder distention procedure and a cystoscopy. The dr. said the findings are consistent with IC. But I have NO PAIN, no burning, it's not even an urgency feeling, more like pee will fall out if I don't sit on the toilet. Does that make any sense? I also wanted to know if anyone has this symptom: I feel an ache in my vaginal area, like up inside of me. If this is normal, why pain in the vagina? It sort of feels like the first time you've had sex after not having it for awhile, but the feeling might last all day then again not have that feeling for several days. HELP!!

[ads]

Here is a good place to start on the ICN's website.

http://www.ic-network.com/handbook/

There are also many books. I am not up on the diet info, but others will probably post more on the topic. If you don't get a response, just repost it under another section.

ads

Thanks for responding so quickly. Where can I find the diet that seems so helpful to everyone? I'm almost afraid to look at it.......probably everything on it is a favorite of mine!!

[asclerk]

Interesting that you should say PFD. Back in Jan. of this year, I had a weakening of my pelvic wall and my small bowel and rectum prolapsed into my vagina. They did a surgical repair and after all that is when this frequency and all these other symptoms appeared. Although I like my dr., I did mention this to him and he seemed to dismiss that. Now I'm thinking that I should investigate this further.

[Katrina]

Hi Katrina,

I just found this site and have just started reading. My story sounds alot like some people on here. I was just diagnosed with IC. I have no pain at all...just a feeling that I'm going to pee at any moment. Now this feeling doesn't last all day, mostly in the morning. I'm just not convinced that this is what I have. They did the bladder distention procedure and a cystoscopy. The dr. said the findings are consistent with IC. But I have NO PAIN, no burning, it's not even an urgency feeling, more like pee will fall out if I don't sit on the toilet. Does that make any sense? I also wanted to know if anyone has this symptom: I feel an ache in my vaginal area, like up inside of me. If this is normal, why pain in the vagina? It sort of feels like the first time you've had sex after not having it for awhile, but the feeling might last all day then again not have that feeling for several days. HELP!! Way before I had any pain I had symptoms like your...with the exception of the ache in my vagina which has come later...and may be Pelvic Floor dysfunction related.

http://icandme.9.forumer.com/index.php?showtopic=6 pelvic floor dysfunction (PFD) learning to relax the muscles treatment options symptoms of PFD and more
I agree with what Ads said about Dr. Moldwin's book....he is a great resrouce for IC and PFD.

Basically your current symptoms are what mine are...my PFD is usually worse than my IC now but my IC is not gone.
http://icandme.9.forumer.com/index.php?showtopic=12 diagnosis struggles


If you google Pelvic Floor Dysfunction you can get some info on how it interacts with IC http://bio-medical.com/news_display.cfm?mode=INC&newsid=47

I also agree with tizi about looking into vulvodynia...something that Dr. Moldwin's book the IC survival guide will talk about too.

Not everyone with IC has pain and sometimes that feeling like you have to pee when nothing is in your bladder can be pain in its mild form. Sort of like your bladder is trying to tell you something is wrong but doesn't know what else to say.
There is a yahoo group called happy pelvis that is great on pelvic floor dysfunction as well http://health.groups.yahoo.com/group/happypelvis/messages

I definatly think you should look into PFD furthrer!! :grouphug:

[asclerk]

Thanks so much for all the info.

[clmorris]

I was just officially diagnosed after months of treatment with my urologist.
I have been reading all of the information given and still have questions.
What is RIMSO-50, is it the same as DSMO.
Are the DSMO instillations suppose to hurt so bad. It didn't hurt right away just about 60 seconds later. The doctor seemed shocked I could not hold the little 50cc's she just gave me. Is it that abnormal? Is the pain normal?
How does everyone handle abscense from work without being fired. I just started my job and am still on 90 day. I am really getting worried about it.
Also how do you get the bathroom pass.
Oh thank you so so much. Just reading these notes back and forth has really given me alot of comfort.
Thanks
Connie:pray:

[asclerk]

Although I am newly diagnosed, I am really not the one to answer any of your questions. I have very minor symptoms right now and am not familiar with what you are asking. Katrina has been very helpful to me......make sure to talk with her. She has a wealth of info. Take care and good luck.

[CarolH63]

gOD BLESS YOU KATRINA FOR GIVING SUCH WONDERFUL ADVICE TO US NEWBIES.

CAROLH63

[CarolH63]

Ps

Katrina,

What Type Of Pain Releif Do You Use? I Am Having So Much Trouble Getting Anything For My Pain.

Carolh63

[RunningAmok]

Hello...

I'm either still unsure of whether or not I have IC, or I'm in denial, I haven't figured it out yet, lol. Been in pain for over a year and a half, finally went to the doctor this past June. Since then, it's been multiple tests and doctor visits and phone calls and now, short-term disability due to pain and inability to think straight from the pain meds (I work for a pharmacy, so thinking straight is rather crucial there, as at any job I would think). Anyway, I saw my gyno yesterday, and while he hasn't yet ruled out endometriosis, he really thinks I have IC.

I was put on doxycycline on the off chance I have urethritis, which he said also would not show up on any tests. I've been on Tramadol for the pain, and while it helped some, it didn't help a lot. I think the kicker that made him think IC was when I mentioned the frequency/urgency/pain of urination and afterwards. It wasn't constant, but I noticed it after drinking cola shortly after my last appointment (just under three weeks ago) so he didn't hear about it until now. However, this was not the first time I'd had the urination problem. And all of my urinalyses have been negative over the last two months. Another thing - I have often had bouts of incontinence (not being able to make it to the bathroom is NOT fun).

I'm 30 years old. I'm already on medications for epilepsy, asthma and GERD. Have seasonal allergies that I generally treat with Benadryl (which appears to be on the no-no list for IC). I'm still waiting on medical records from my gall bladder removal surgery from 15 years ago to see if any endometriosis was found then (he'd know for sure then about that).

One of my major concerns has been that of potassium being a major culprit it seems. I ended up passing out last year because my potassium had gotten too low (along with being kept overnight for a prolonged QT on my EKG). Does the IC diet actually have less potassium than a "normal" diet? I do not want to go through that sort of thing again.

I think that is it. Sorry if this is in the wrong place, or too long, or anything else.

[Katrina]

:welcome: Amok
Everyone is different with the IC diet so if you can tollerate foods high in potassium you can eat them....this diet is only to help you feel better. YOU DO NOT WANT TO BE LOW IN POTASSIUM. NOt only because of the symptoms that you have had but also because potassium is one of the minerals that makes things that are acidic become alkaline in our bodies...believe me want things to become alkaline.

I think the problem is that high in potassium foods are often not tollerated well but if you look in the book "confident choices" it is helpful for the diet. I can tollerate Apples at this time, milk, rice, basically the way you get your potassium may be harder and you should definatly talk to your doctor about this to make sure you get enough.

I think Benadryl Dye -free allergy is ok....decongestants are not they are acidic. So Benadryl D wouldn't be friendly.

not that I want you to have a load as heavy as mine but it is possible to have both endo and IC. :grouphug:




Carol, I use alterantives and vicodin, and Neurontin for pain. My family doc treats my pain. I don't see my uro very often these days. If my bladder is killing me I do a rescue instillation with heparin and lidocaine.....if I have a PFD flare I have a muscle relaxant cyclobenzapr that makes me tired and I would prefer to not need to take but I have just incase. I had a lot of trouble getting pain treatment in the beggining too...but once I started and proved that I didn't abuse it and so on it got a lot easier. I guess in some ways it was a matter of getting a relationship with the doctor. If your doctor won't treat your pain....give him a copy of the pain rights and ask if he is uncomfortable to refer you to a pain specialist.

[CarolH63]

Isn't Tramadol an anti-inflamatory which is not IC friendly. I finally found a uro who actually knows about IC and so does her staff. She has me on diazapam, oxycodone, oxybutrine, and amitryptiline. Along with all my meds for diabetes, gerd, ulcerative colitis, and anxiety/depression. The combo my new uro has given me helped so much with my pain. Doesn't hurt as much and not so much pain when I pee. But I still go up to 80 times a day. And I am so tired!

[CarolH63]

My uro tried to give me a treatment but my bladder was spasming too bad.

[RunningAmok]

Carol - I'm not sure about Tramadol and IC, but I was originally taking it for ovarian cysts (which is what they thought was they main culprit of my pain, but apparently is not) and while I don't get much relief, at this point, some is better than none. Although it's the pain that is the reason I'm up now :/

Katrina - thank you for your advice. I really appreciate it. I thought for some reason pseudoephedrine was the main ingredient in Benadryl, but it's diphenhydramine. My bad. I will definitely talk to my doctor about the potassium issue. I think I'm dreading the possibility of yet another referral (I'm so so so tired of doctors, lol). I certainly hope I don't have endo as well, because odds are I'll need surgery if that's the case. I hope he has my records by the time I see him, next Tuesday. We're gonna discuss Elmiron and bladder instillation, pros and cons, etc.

I think my biggest question - which I doubt anyone could answer - is why now? I'm probably eating healthier now than I was a few years back, and drinking more water, and I rarely drink pop just because it doesn't appeal anymore.

Anyway, thanks for all the advice. I appreciate it more than you know.

[CarolH63]

Running Amok,

I agree with you. I am sick of all the doctors too. I think I finally found a winner. Hope you do too.

Katrina- You really are a big help and give great advice.

Carol

[boscoe777]

Thanks ladies! This is also good for a refresher. I've had it for 4 years and I'm still learning new things.

[LynnInDC]

Katrina - I found an old post from you referring to IC docs in Green Bay. I live in Door County and desperately need a referral to a competent IC doc. Hope you are still there and in remission!
Thanks,
Lynn

[Katrina]

Lynn, :welcome: to ICN!
Yes still around....live in between Green Bay and Manitowoc now. I have a list of doctors in the WI area .....it is sort of a evaluation by patients sort of list though. It is in the files in the yahoo group ICinWI which I hope you will join. Feel free to email me.
http://health.groups.yahoo.com/group/ICinWI/

Oh ya, YES! I do consider myself in remission...or bascially at a point where treatment has my symptom free! I still get PFD flares occassionally but since starting Lyrica I cheat on the diet and as long as I have prelief with my cheats I don't notice it...and I am telling you I am cheating in ways that would have given me nightmires at one time...and it took real guts to start trying this stuff again!

If there is anything I can help you with I am willing to try so let me know! :grouphug:

[LynnInDC]

It was so, so great to get your email. I am very anxious to get the listing of IC docs in our area. I did join the ICInWis group and went through all the monthly postings and couldn't find the list you mentioned.
It's too late to call you now but I certainly will.
I am happy that you are in remission!
That, too, gives me hope.
Very sincerely!
L.

[mlasorsa]

:smile tee Thank you for the advise! I had not heard of several of them. Especially the car sticker. What a great idea! I have had several "accidents" and I worry so much when I go out that it might happen in an inappropriate place. I keep extra clothes in the trunk of the car, but how embarrassing it would be! Mary:smile tee

[ericajones80]

great tips....the heating pad is the best invention in the world as far as I'm concerned

[bluepaint82]

Hi everyone my name is Joy. I was just diagnosed with IC a week ago. I must say that I am happy to find a place where I can come and talk to people that know what I am going through. I am so greatful to know the info in this thread. It has been a really rough few years and its seems nice to know that its not all in my head. Thanks for being here!:hi:

[jameson77]

Hi everyone! I was diagnosed just this week and thankfully found the site and forum. I am so impressed with all of the information that is available here to those of us with IC. I have already printed tons of information to show my family. Thank you for having me and I am looking forward to connecting with you all in the future!

[Cathy Bradley]

Hi. I am Cathy. I have not really been diagnosed yet but saw the Uro for the 1st time today and from everything i have read on this site and some other sites it is a strong possibility that I do have IC.
I will be having an ultrasound and the scope-thing (which sounds really pleasant!) in the next couple of weeks.

I want to say thanks for all the diet info!!! I was in pretty bad pain-hurt to walk- and couldn't sleep last week. I cut out everything that was listed as a possible trigger (even my much loved Coffee). No food or drink was worth enduring that pain and discomfort! I found relief very quickly and only have a slight amount of pressure now. I used Tylenonl PM (just 1/4 of the usual dose) just to sleep at night. Because I also have Chrosnic Fatigue Syndrome (have mostly good days with it) I am always suseptable to relapse if I don't get enough sleep so I was really worried about that!

I have a question...is lemon a no-no? I definitely see that although I ate very nutrisiosly my diet was very acidic.

I am hoping that maintaining the diet helps me stay symptom-free. I did have the Flare-ups when I got my period the last two months so we'll see if that remains to be a trigger.
I found out (the hard way) that Nyquil and Sudafed are a neal no-no! What is a good cold med that doesn't produce IC symptoms?

Thanks again for all your info-I read countless threads!!!

[tratra1964]

I was just wondering if there was anyone or anyway to get help on getting the Newbie kit? Right now $63 is like $200 to us. I have been unable to work ever since my bladder surg in April. So we surrive right now on my husbands $654.00 month. I am very interested in that kit. If not can someone recomend the most important read I need to get? Thank you for all your help. Now that I know whats wrong with me. In a way I feel better. I was starting to feel people were not taking me serious about what I was feeling
Thank you again.

Trieste

[ICNDonna]

You can explore the IC Network site and print out information from anywhere on the site. That should be a huge help to you.

Warm hugs,
Donna

[tratra1964]

Thank you Donna.

Trieste

[Cathy Bradley]

That's a good point.

I, a new IC patient, ordered the informational book (the Interstitial Cystitus survival guide) that is sold on this site and it was good but honestly did not provide much additional information than the site does. This site and the ICA site are very comprehensive!! The only thing I learned was that the doctor (who wrote the book and has IC) recommends drinking 75 ozs of water if you weigh 150 lbs - you may have different restrictions due to your surgery and that there is a website that you can post questions to Urologists and get answers-www.mediconsult.com. I also ordered the prelief but did not try it yet.

What type of surgery did you have? Did it help?:hi:

I was just wondering if there was anyone or anyway to get help on getting the Newbie kit? Right now $63 is like $200 to us. I have been unable to work ever since my bladder surg in April. So we surrive right now on my husbands $654.00 month. I am very interested in that kit. If not can someone recomend the most important read I need to get? Thank you for all your help. Now that I know whats wrong with me. In a way I feel better. I was starting to feel people were not taking me serious about what I was feeling
Thank you again.

Trieste

[tratra1964]

For about a year I was having leakage when I laughed, sneezed or coughed. The last straw was when my husband and I where on our honeymoon in Feb. this year. I was so embarrased. I am older than him by 5 years so this is hard to handle. It makes me feel even more older than him. But he says not to worry he is not going anywhere. We were out downtown Branson and he had made me laugh to hard and had an accident that showed thru my jeans. So when we got back went to Dr. and he said that my bladder had fell. So he made a hamock to keep it in. But I still had pain like I was kicked down there it hurt so bad. He said that it would get better over time. So I got a second. And she did an exam and said that the mucels (Oh by the way not the best speller) down that were not expanding like they should so I start PT monday. And she had a feeling that I also had that IC. She was right on target. So onward I go. I always wanted to lose weight now is my chance:) . Thank you for your reply.

Trieste

[tratra1964]

Oh it helped for the leakage but I still go and go at night and sometimes it takes forever to even begin to go. My husband has asked on several times was I okay. Just couldn't get it going. I can go before bed and 5 min after I lay down I'm up again.

[panzarella]

As a newbie, the information posted was VERY HELPFUL!!!

I am confused about one thing...

I have read on varies sites that it is recommended that you get a MEDICAL ID bracelet to not only list meds you are taking but also to state the requirement of needing a restroom immediately. Is this necessary? Can it be useful? Does anyone have one for IC?

Thanks for your help.

[Katrina]

I have a medical ID bracelet but it doesn't ask for rest room access it has other things needed to know if I were unable to speak for myself....and encourages them to look for more information lol Anyway, I think yes that helps but what I have is a card that says I have IC that you can buy here at ICN that says that it can be painful to hold it. I have used that and I do think having an ID bracelet and the ICN card makes it hard for most people to not allow you restroom access. It has helped me in the past. It is totally up to you how important this is. If you struggle to get a restroom at times or can't handle waiting in a line than it is probably worth it to have these options as ways to help people believe you when you say your circumstances of holding it are different.

[nkier]

I love your quote. It seems the options I have tried to reduce bladder pain never work and then I'm on to the next medication. I need to think of this quote as I continue to try and get my bladder pain under control. I am switching from full time to part time and am on total disability right now. I think it will be easier to work 4 hours a day instead of 8. Thanks!!!

[Glenda2]

I have a silly question , can someone please explain to me HOW food effects your Bladder ?

I can see it affecting your Bowels and even Acid Reflux.

And I can see beverages of all kinds affecting your Bladder.

I don't see how food affects your bladder , unless it is too acidy.
Yes I know Booze etc would do that. (I don't drink)

I need an explination of how food trigger IC flares >:help:

Sorry to sound uneducated here. (But I am with IC):bonk:

[purpletomorrow]

My IC survival Guide! Just my two cents!

••••• Find a good IC specialist.

http://www.ichelp.org/LivingwithIC/M...5/Default.aspx

http://www.ic-network.com/md/#search

••••• Get on the IC diet and STAY ON IT

http://www.ic-network.com/diet/2009icdietlist.pdf

••••• Drink Teeccino all day, it alkalinizes the urine

http://www.teeccino.com/ProductGroup...oductGroupID=5

••••• SUPPLEMENTS --

1. Take Prelief with every meal.

http://www.icnsales.com/PRELIEF-p-1-c-105.html

2. Take CystoProtek, which coats the bladder, lessens the irritation, and lets your poor bladder heal itself.

http://www.cysto-protek.com/

http://www.icnsales.com/CYSTOPROTEK-p-1-c-100.html

3. Take Desert Harvest Aloe Vera, which works WITH the CystoProtek to sooth and coat the bladder and speed the healing

https://www.desertharvest.com/shop/i...on=show_detail

••••• Use Emu Oil to soothe external uro-genital vulvar pain and inflammation

••••• Avoid swimming pools; the chorine in them will make a tender bladder scream in pain

••••• Avoid NSAIDs, My IC specialist insists that all non-steroidal anti-inflammatory drugs damage the lining of the bladder. This means no aspirin, no naproxin, and no ibuprofin.

••••• Avoid vitamin pills, especially vitamin C. Get your vitamins from food, mostly veggies. Try to eat foods with a very high nutrient to calorie ratio, think leafy greens and broccoli.

••••• Tramadol (50 mg) is an excellent prescription pain pill for IC pain.

••••• You don't want chlorine in your drinking water - When water sits out overnight, the chlorine in it off-gasses, and leaves the water. Leave a pitcher sitting out overnight for drinking water the next day.

••••• Use vaginal estrogen. The whole female uro-genital tract depends on estrogen to function well.

••••• Use prescription Hydroxyzine-- an anti-histamine that stops histamine from assaulting the bladder.

http://en.wikipedia.org/wiki/Hydroxyzine

••••• Use a tri-cyclic antidepressant like Elavil or Remeron to lessen the pain messages that reach the brain, and make you drowsy, so you sleep.

http://en.wikipedia.org/wiki/Elavil

••••• Elmiron. I achieved tremendous relief from just the IC diet and CystoProtek before I later added Elmiron into the mix.

[Melissa66]

Is it okay for me to ask my Dr. for a disability sticker if I'm not suffering from a severe case of IC? Currently, I'm urinating about 8 times a day and my pain/pressure is under control, not great, but under control. I just don't want to abuse the priviledge if I'm not in dire straits.

[purpletomorrow]

Eight times a day? Wow! I"m down to 15 or 16 and thought I was doing great!

[tulipgirl]

Hello Melissa,
I don't think I would use that , I would let others that are in worse shape, you can get a card from IC network that will help you get in the front of the line to go potty it says you have IC and need to go to the bathroom fast, If you have a problem where you have to pee alot and can't wait I have heard from friends that have IC that they can get a parking pass for handicap space so they can park and go inside to pee if they need to quickly but I would not abuse that unless nessisary because there are so many people that can hardly walk that could use those parking spaces, But it is up to you, I would only use the help if you truely need it but that is just my opinion.

[statesboro]

I just wanna add something else. If I was down to urinating only 8 times in a day, then I would not be thinking about disability. If I was down to 16 like the other person stated, then I would be happier now. I just don't have pain with mine. Ok. I could see if you had stated 50 like some IC patients still are. By the way, I don't try to keep a count for me. I still think it was ok to ask that. Yep!

[chickie]

I am very new to this site. I have been diagnosed with IC. I can deal with it during the day, but at night when I lay down I cannot find relief. I lay down, get up go to the bathroom, lay down, cover up, get up go to the bathroom. And this goes on until I am so tired I cannot get up again. Is this normal? Is there anything that will help. I am taking Elavil 20mg. I have been on it for 5 weeks now with no change at all. My Dr is the only urologist in town and he doesn't provide me with much information.

[maryla]

What else have you tried? Atarax, instills, diet? I know I'm right there too last night was bad. And I get so mad because, I'm so tired. Which it really doesn't help the situation at all.

Can you go outside of your city for a uro? Mine is about a 2 hour drive. We don't really have a big choice in my city either.

Hope you find some relief soon!!

hugs and blessings

[chickie]

My Dr just put me on a new med called Gelnique. My symptoms have almost completely went away! I am actually getting rest at night now. The only drawback is that this med is VERY expensive.

[statesboro]

I had never heard of Gelnique before. Oh! I just looked it up. It is actually a cream that is rubbed on and designed for people with overactive bladders. Of course, you should know that by now. It is working for you. How does rubbing some gel on your body actually help a messed up bladder? Oh, yeah! I don't know many things actually do a specific task. Oh, well!

[chickie]

I couldn't believe it. The Dr told me it may take 2 weeks to start working, I actually had results the first night. It does make you sleepy tho. So i use it a bed time. I have only been diagnosed for a few months but I have had symptoms for years not knowing what was wrong.
Do any of you guys have success with diet. I gained weight. I am a diabetic but I had to give up splenda. I have went back to using splenda since this new med, with no bad reaction. So hopefully???????

Chickie

[maryla]

How awesome for you. I hope you continued success!!


hugs and blessings

[CathyKi]

Are you still on the gelnique and how is it going? I just started.

[chickie]

Yes I am still taking Gelnique. It is still working well for me. I still go to the bathroom more than the average person during the day, but nothing like before Gelnique. But I am actually sleeping at night. I was getting up anywhere between 10-40 times a night now I get up 2 or 3 times. (Unless I eat something spicy or tomato based) It has really help. Its just expensive. That and sleepiness are the only drawbacks. So how is it working for you so far?

Chickie

[CathyKi]

So far so good. It lasts longer than the Enablex I was on and of course it doesn't have the side effects. Just hope it keeps working. I take it at 7am. and it lasts until 9pm. I take Ambien to sleep but maybe eventually I won't need it. :)

[Kristine30]

I love this list!!!

Thank you:)

[stacym92316]

I was recently diagnosed and a bit overwhelmed with the information out there. I'm on elmiron 4 times a day and my hair is thinning. Not a good thing for a hairstylist. Has anyone tried an NAET test or allergy test?

[angeladarden]

Hello My IC Family,

My name is Angela Darden and I was dx officially on 8-25-2011 With IC. I had never heard of it until then... It truly changed every area of my Life...

I have read some amazing stories and the Forum has helped answer a lot of questions for me.

To all the who put this Great Network together I want to Say God Bless you for your Compassion and Zeal and to all the people on this Network Forum. I want to encoruage you and know that I am praying for you and Believe that " You Can Begin Again" know matter where you are and what you are feeling and experiencing at this time.
God has a plan for your Life, He has not forgotten about you.No matter where you are He wants to Love on you Today and everyday of your Life.He can Love you throught this time in your Life right now and forever.
Know that your stories have made a impact in my life and others.. God Loves you amd I Love you all

[tierney]

There should be a newbie IC app or something! It would be very helpful even just for explaining IC. I would love to be able to just whip out this info on my phone...especially the stuff about what can cause a flare because everyone thinks I am cuckoo when I say fumes can make me sick.