I'm looking for a friend

[mom2kk2006]

I have just been removed from the hospital Wednesday, my gyne blew up my bladder and held it for a few minutes and when I awoke I was told that I have stage 2 IC. Does anyone else have this stage? I have always always always had to go pee frequently but never thought anything of it, now all of a sudden I had a huge flare up and I go every 10 minutes and still feel the urge to go. I don't have a great deal of pain, I do have constipation but nothing major, my only thing is constant peeing. My question is, is there anyone in the same boat as me and will there be light at the end of the tunnel and when. I have now got myself into a state of depression because I can't possiblylive my life like this. I don't have any clue what I can or can't eat, can someone help me there? I started on Elmiron on Wednesday, is this going to help with the frequency and any sooner than like 3 months.

[Cheries]

Welcome to the board! It can be very overwhelming when you are first diagnosed. You are probably in a flare from having the distention and this should get somewhat better. there are lots and lots of treatments out there. Have you tried elmiron? I wasn't able to take it, but some have done quite well with it. Antihistamines, elavil, just to name a few. Do you have a good urologist? I know the depression can hit big-time and I went through that also. The best thing I did was get a counselor to help work through it all as I tended to go from A to Z quite quickly mentally. I must say that after 13 years I am a little better, but have pain treatment. Mentally I have come a long way I think. I no longer let it control me, but it is a challenge during flares and everyday in someway or another. I refuse to let it rule my life. Have you heard about the research into the toxin APF? This is looking like a MAJOR breakthrough in finding a cause and treatment. We are not far away from it. Good luck and IM anytime you need a friend.

[BigFig]

Hi Mom2, :welcome: to the ICN. You have found a wonderful place to find friends! Sorry that you have IC.

I saw a previous post that you said you are diagnosed with a stage 2 IC. That must be a Canadian term? Not sure, but there are alot of others that post that are from Canada and I'm sure they would know.

Are you currently only taking Elmiron for your IC? There are alot of other meds available for IC and other related conditions that are associated with IC.

I fortunately do not have the urgency or frequency related with IC so I cannot help you there, but others will post and offer their knowledge.

Be sure to check out the patient handbook, there is a link at the top of this page, were you will find information that will be very helpful.

[Sher E]

Mom2~

I wish I could welcome you with open arms, but my arms are too busy pulling my own hair out! I have yet to be diagnosed, but feel your pain. I keep hoping that it will be endo in my bladder causing this, but some how I know better. I thought I was havng a decent day today until I was sitting on the couch eating a sandwich and the thought of everything I can't have just made me break down and cry. Not just for the food, but for the aggravation IC causes for so many, not knowing what to do for it, not having your life as it was before this reared it's ugly head.

Hopefully you can find a good Uro, try some Ditropan for the frequency and urgency, and hope that it will come together for you in a relatively short time.

My thoughts are with you.

[mom2kk2006]

Welcome to the board! It can be very overwhelming when you are first diagnosed. You are probably in a flare from having the distention and this should get somewhat better. there are lots and lots of treatments out there. Have you tried elmiron? I wasn't able to take it, but some have done quite well with it. Antihistamines, elavil, just to name a few. Do you have a good urologist? I know the depression can hit big-time and I went through that also. The best thing I did was get a counselor to help work through it all as I tended to go from A to Z quite quickly mentally. I must say that after 13 years I am a little better, but have pain treatment. Mentally I have come a long way I think. I no longer let it control me, but it is a challenge during flares and everyday in someway or another. I refuse to let it rule my life. Have you heard about the research into the toxin APF? This is looking like a MAJOR breakthrough in finding a cause and treatment. We are not far away from it. Good luck and IM anytime you need a friend.

Hey back, thanks so much for the encouragement. do you have any suggesstions on how i can start to live my live human, what I am alloud to eat and approx how long a flare lasts.

[mom2kk2006]

Mom2~

I wish I could welcome you with open arms, but my arms are too busy pulling my own hair out! I have yet to be diagnosed, but feel your pain. I keep hoping that it will be endo in my bladder causing this, but some how I know better. I thought I was havng a decent day today until I was sitting on the couch eating a sandwich and the thought of everything I can't have just made me break down and cry. Not just for the food, but for the aggravation IC causes for so many, not knowing what to do for it, not having your life as it was before this reared it's ugly head.

Hopefully you can find a good Uro, try some Ditropan for the frequency and urgency, and hope that it will come together for you in a relatively short time.

My thoughts are with you.


I so know exactly how you feel, I've cried every single dayl Is this Ditropan for IC that may help with frequency? Doe it work with. IC. I know the feeling of wanting your life back, I've dwelled on that for days.

[mom2kk2006]

Welcome to the board! It can be very overwhelming when you are first diagnosed. You are probably in a flare from having the distention and this should get somewhat better. there are lots and lots of treatments out there. Have you tried elmiron? I wasn't able to take it, but some have done quite well with it. Antihistamines, elavil, just to name a few. Do you have a good urologist? I know the depression can hit big-time and I went through that also. The best thing I did was get a counselor to help work through it all as I tended to go from A to Z quite quickly mentally. I must say that after 13 years I am a little better, but have pain treatment. Mentally I have come a long way I think. I no longer let it control me, but it is a challenge during flares and everyday in someway or another. I refuse to let it rule my life. Have you heard about the research into the toxin APF? This is looking like a MAJOR breakthrough in finding a cause and treatment. We are not far away from it. Good luck and IM anytime you need a friend.

Thanks for the nice thoughts. What is APF? Is there a way you can help me with what kind of diet to start with? Even a little big. I don't have an appt with opsterition until next week and i literally don't know what incredients, if you may have time could you email me some suggesstions to eat and feel ok.

[delie]

hi, I'm on tofranil an old style anti depressant it has helped me with the frequency and the pain, did"nt what to go on elmiron was worried about the side effects, it also helped with the depression I think most of has have been through at some stage, good luck it will get better

[mom2kk2006]

Welcome to the board! It can be very overwhelming when you are first diagnosed. You are probably in a flare from having the distention and this should get somewhat better. there are lots and lots of treatments out there. Have you tried elmiron? I wasn't able to take it, but some have done quite well with it. Antihistamines, elavil, just to name a few. Do you have a good urologist? I know the depression can hit big-time and I went through that also. The best thing I did was get a counselor to help work through it all as I tended to go from A to Z quite quickly mentally. I must say that after 13 years I am a little better, but have pain treatment. Mentally I have come a long way I think. I no longer let it control me, but it is a challenge during flares and everyday in someway or another. I refuse to let it rule my life. Have you heard about the research into the toxin APF? This is looking like a MAJOR breakthrough in finding a cause and treatment. We are not far away from it. Good luck and IM anytime you need a friend.

Thank you for the kind words. I'am so glad I found this site. What is APF? Do you have any suggessions or recommedations of things I can do to ease the flare. Someone told me an Aspiran a day, she was actually a dietician who has it, needs no meds, just diet, but she didn't help at all with that.

[Annie2]

Hi and :welcome: to the ICN!

I've noticed in several posts you are looking for help with the diet. You will find a copy of the diet in the Patient Handbook at http://www.ic-network.com/handbook/diet.html For the majority of us, carefully following the diet helps tremendously. One way to start this diet is to begin by eating only foods in the "Usually Ok" column. For many of us, it took a few weeks of following this before our bladders calmed down and we noticed the benefits. Once that happens, you can begin trying foods from the "May Be Ok" column. When adding foods, be sure to add only one at a time so that you can tell if your bladder is irritated by that food or not. Also, wait a couple of days before you try adding another "May Be Ok" food. It is a slow process, but really worth the effort. You will learn what foods your bladder does tolerate and which ones irritate it and must be avoided. It is difficult to give up many favorite foods, but most of us do it because it works.

You mentioned taking aspirin. For many of us, aspirin can cause an increase in our symptoms because it is acidic. Ouch!!! Some of us do ok with Tylenol and use that instead of aspirin.

Learning all you can about IC is another thing you can do to help yourself. A good place to start reading is with the Patient Handbook on this website. Near the top of the page you will find the words "Patient Handbook". Just click on those words. That is a link to the Patient Handbook and will take you right to it.

Again, welcome to the ICN Family. Glad you found us!

[emily1]

Mom2kk2006-
Your symptoms sound very similar to mine. I was diagnosed about six weeks ago and started the diet that day. It took about two full weeks before I noticed ANY change, and my symptoms continued to improve over the next couple of weeks and now the frequency and urgency is gone! Hopefully it will stay that way and I hope you have good luck with the diet also! Hang in there and give the diet time to work! :)

[mom2kk2006]

Hi and :welcome: to the ICN!

I've noticed in several posts you are looking for help with the diet. You will find a copy of the diet in the Patient Handbook at http://www.ic-network.com/handbook/diet.html For the majority of us, carefully following the diet helps tremendously. One way to start this diet is to begin by eating only foods in the "Usually Ok" column. For many of us, it took a few weeks of following this before our bladders calmed down and we noticed the benefits. Once that happens, you can begin trying foods from the "May Be Ok" column. When adding foods, be sure to add only one at a time so that you can tell if your bladder is irritated by that food or not. Also, wait a couple of days before you try adding another "May Be Ok" food. It is a slow process, but really worth the effort. You will learn what foods your bladder does tolerate and which ones irritate it and must be avoided. It is difficult to give up many favorite foods, but most of us do it because it works.

You mentioned taking aspirin. For many of us, aspirin can cause an increase in our symptoms because it is acidic. Ouch!!! Some of us do ok with Tylenol and use that instead of aspirin.

Learning all you can about IC is another thing you can do to help yourself. A good place to start reading is with the Patient Handbook on this website. Near the top of the page you will find the words "Patient Handbook". Just click on those words. That is a link to the Patient Handbook and will take you right to it.

Again, welcome to the ICN Family. Glad you found us!

Thanks so much you've been a great help.

[stacey79]

Hey, there. Welcome to the ICN boards. You'll find plenty of helpful people here who can completely relate to what you're going through - physically and emotionally!

You are probably flaring from your hyrdrodistension, so it should get better over time. Some of us start feeling better pretty quickly. Others take a little longer after them, but at least within a month you should feel better, I think.

Urgency and frequency are my biggest IC symptoms. I've found that Ditropan XL works very well for me. It's more immediate than Elmiron, but the Elmiron seems to work for me, too. Just takes longer. Ditropan XL, Detrol LA and Vesicare are all bladder-relaxer drugs. They don't cure IC or anything, but they can help relax your bladder so you don't feel that urgency all the time. Talk with your doctor. you might just need to experiment. For example, Ditropan XL works great for me, but Detrol didn't work at all.

There are some self-help things that can help with frequency/urgency as well. I think heat is one of my biggest reliefs. I have a love affair with my heating pad when I'm not feeling well. The heat patches work OK, too, but they often don't get hot enough for me. Warm baths are also good. Beware of adding bubbles or anything other than baking soda, though. Those things make some of us feel worse.

Pyridium is another medicine that can help with the urgency. You can buy it over the counter as Uristat as well. You might ask your doctor about it. It helps me a lot when I'm flaring from traveling or from an infection. It does turn your urine orange, though. Just a heads up so that doesn't throw you off!

And the diet is also helpful. There is a diet message board on down that has TONS of helpful resources. The patient handbook does as well. One of the best things to do is an elimination diet. It kind of stinks at first. You basically eliminate everything that could be problematic (there's a food list in the handbook that tells you) and then slowly add things back in to see what bothers you. Some of us are super sensitive to things like preservatives and stuff. While others aren't as sensitive. There are a few who diet doesn't impact their IC. For me, I'm bothered my caffeine, vinegar and citrus fruit.

I hope this helps some. Know that you've found a caring community here. Feel free to PM or e-mail me. I know others are the same way. We've all been there done that or are still doing it and trying to figure it out. The neat thing is that we all understand each other and try to share tips we pick up along the way. :)

[mom2kk2006]

Thanks so much Stacey that was so sweet of you, maybe I will email you later to chat, my kids up right now and I'm quickly looking around. What's your take on eggs? Can you check out my diet forum and let me know your opinion?

Hey, there. Welcome to the ICN boards. You'll find plenty of helpful people here who can completely relate to what you're going through - physically and emotionally!

You are probably flaring from your hyrdrodistension, so it should get better over time. Some of us start feeling better pretty quickly. Others take a little longer after them, but at least within a month you should feel better, I think.

Urgency and frequency are my biggest IC symptoms. I've found that Ditropan XL works very well for me. It's more immediate than Elmiron, but the Elmiron seems to work for me, too. Just takes longer. Ditropan XL, Detrol LA and Vesicare are all bladder-relaxer drugs. They don't cure IC or anything, but they can help relax your bladder so you don't feel that urgency all the time. Talk with your doctor. you might just need to experiment. For example, Ditropan XL works great for me, but Detrol didn't work at all.

There are some self-help things that can help with frequency/urgency as well. I think heat is one of my biggest reliefs. I have a love affair with my heating pad when I'm not feeling well. The heat patches work OK, too, but they often don't get hot enough for me. Warm baths are also good. Beware of adding bubbles or anything other than baking soda, though. Those things make some of us feel worse.

Pyridium is another medicine that can help with the urgency. You can buy it over the counter as Uristat as well. You might ask your doctor about it. It helps me a lot when I'm flaring from traveling or from an infection. It does turn your urine orange, though. Just a heads up so that doesn't throw you off!

And the diet is also helpful. There is a diet message board on down that has TONS of helpful resources. The patient handbook does as well. One of the best things to do is an elimination diet. It kind of stinks at first. You basically eliminate everything that could be problematic (there's a food list in the handbook that tells you) and then slowly add things back in to see what bothers you. Some of us are super sensitive to things like preservatives and stuff. While others aren't as sensitive. There are a few who diet doesn't impact their IC. For me, I'm bothered my caffeine, vinegar and citrus fruit.

I hope this helps some. Know that you've found a caring community here. Feel free to PM or e-mail me. I know others are the same way. We've all been there done that or are still doing it and trying to figure it out. The neat thing is that we all understand each other and try to share tips we pick up along the way. :)

[stacey79]

Eggs are one of the safe foods. I actually left them in when I did my elimination diet. Had lots of eggs and toast with butter! I don't know about egg substitutes, but eggs themselves are OK. What you do to them can be bothersome. For example, deviled eggs have mayo and mustard - both of which have vinegar. Vinegar bothers me, but it doesn't bother everyone by any means.

I hope that helps. Feel free to e-mail any time! :)

[Sandrouchka]

Hi,

Sorry for you but you'll see all the people here are very kind et you'll find good advices and a lot of encouragements

A lot of courage

Sandra