Newbie to group and to IC

[magmouth]

Another newbie here, with furstrations and questions. I just found out I have IC and have ordered some books from Amazon, I'm not sure if it is the same books I've read mentioned here but I'll get these and get boned up and then order more. I feel lucky that I either have a high threshold for pain or mine hasn't gotten to that extreme point yet. I have had pain but couldn't identify it with anything, but now I'm beginning to see when it happens what it is related to, mostly eating the wrong things.

My major complaint is all the bathroom trips and no sleep at night and feeling like a walking zombie. I've started making changes in my diet, got rid of the coffee and soda pop. Got rid of some bad food, but still learning what I can eat and can't and then how to live within that range. It really killed me to give up my soy milk and other soy products. I don't understand why soy is a problem, but if it is, then it is. I understand about eggs, but dont' know if egg beaters are ok. I'm hoping that the books I've ordered will help me and get me over this hurdle for the food issues.

So hello to everybody, and I'm looking forward to hearing what changes you've made to help you deal with this and getting some ideas that will help me deal with it also.

[SharonA]

:welcome: to the gang. So glad you are here.

You are taking the right steps in learning about IC. Read everything you can. The more you understand, the better you can help your doctor help you. :) :) :)

[magmouth]

thanks Sharon, I know I will need to do a lot of reading. Right now, my biggiest issue is in hoping one of the three books I ordered will have a good list of foods. I have one little sheet from my doctor and it is not very precise in vegtables. Now that I know what I have, I don't want to eat the wrong thing but basically I want to find out what all the right foods are and plan a diet from that.

[ICNDonna]

:welcome: to the IC Network family.

The Patient Handbook at http://www.ic-network.com/handbook has some excellent diet information, including food lists. There's also a lot of other information there.

The best book I know of for a new ICer is Dr. Moldwin's, "The Interstitial Cystitis Survival Guide." It's written so it's very easy to understand. I've had IC for 31+ years and I still learned more from this book.

If you go to the ICN Shop (link at the end of this message) you'll find some excellent books on diet as well.

Donna

[armslee]

Hello and welcome aboard!

Finding out what your food triggers are can be very frustrating. Also it took me about 4 months to really be able to tell that my medications were working. The beginning is a very isolating time and this is really a great place to come for answers and support.

What medications has your doctor placed you on?

[jjt001]

You can also check out the diet listed on this site, that's where I started. You can find it on the home page in the "ICN Patient Handbook" in the upper left corner. You'll find not only diet information but lots of other great information too, it was really a lifesaver for me when I was diagnosed a few months ago (and you won't have to wait for your books to arrive to get started!).

You will find that even with a list of foods there will be some trial and error. Everyone's body (and bladder) is so different that you have to figure out what affects you and what doesn't. I've found, for example, that I can eat some foods that bother many others, but can't eat things that many others can. When you see the list don't get too discouraged, from what I've seen on these boards most people can eat much more than what is listed on the "okay" list, they've just had to figure it out for their own bodies. You've definitely gone in the right direction giving up coffee and soda -- they appear to be prime offenders for most. It was hard for me to give up soda and lemonade (I love lemonade!) but you learn what works for you. Sometimes something will cause a flare and you have no idea what, then you have to do some detective work to see what might have triggered it. The diet is a great tool when that happens, because you can compare what you've eaten with the list and see what the problem might have been.

This site has really helped me, you've come to the right place. Welcome!

[magmouth]

The doctor has not put me on any as of yet. He has me doing bladder holding for as long as I can to help stretch out the bladder. I assume the medication will come after the procedure he is doing on the 29th. We have discussed the medication that rebuilts your bladder lining, sorry I know I'm a bit ignorant right now on all the names, he told me some people can't take it, and it doesn't work for many people as well. The books I've ordered so far are:

A taste of the good Life: A cookbook for an Interstitial Cystitis Diet, B.Laumann
Along the Healting Path, Catherine ******
To Wake in Tears, same author as above
Awakening through the Tears, same author again.

My hubs and I are going out this afternoon, I've had a nap so I'm close to human, and I'm going to hit a big book store and see what they have.

I've wondered why the doctor hasn't already started me on the medication myself. Considering it takes 3 months before you even begin to get any relief and up to 6 months longer to grow the bladder back. I've come to the conclusion that he wants to do the next procedure before the medication. So in the mean time, I wasn't going to lose any ground with my own discovery of foods and things I could do to help myself. The holding my bladder for as long as possible before voiding, seems to have helped a little. I still get the mini urges but by holding them off, it seems I've cut down on a few of my "supposed to be sleeping" wake ups.

[Sarojini]

The book Donna mentioned, "The Interstitial Cystitis Survival Guide" is absolutely the best book on IC ever written... you really should check it out, as it is not expensive. The cookbook you ordered by Bev Laumann is also excellent.

I am not going to comment on the other books; they are not sanctioned by this website, and you will note that the author's name has been censored out of your post -- the books contain very questionable information, and I would rather see you read the Survival Guide and the other books that we have here on the ICN (you don't have to buy them here, you can get them wherever you want) because they contain the most accurate, scientifically proven information.

Anyway, it sounds like your doc talked to you about Elmiron... the med helps a lot of people and it is always worth a shot in the beginning, I believe :)

[magmouth]

I honestly didn't pay attention to them taking the name out. I figured I had to start some where in learning so I jumped on Amazon and order. I will order the book, but since I'll be out today, I'll see if it is something that will be available today.

Have any of ya'll been on the drug elmiron? Has it helped. What side effects if any did you feel

[Babs RN]

Welcome to the ICN:welcome: You've been given some awesome suggestions and guidance. The best place to start is the diet, and where I found out that one of my favorite drinks--Pepsi--is one of my biggest triggers. The diet here in the handbook is wonderful. Please let us know how we can help as you begin this journey, and BTW I am in Florida too!

Hugs,
Barb:smile tee

[magmouth]

I was able to pick the book up yesterday at Barnes and Noble. It was good, but I couldn't say I would rate it as a survival guide. I think because now, there is so much stuff available to me on the internet. The book did give good information on the procedures and test. The doctor has been putting me through all of them for the past 4 months. So that helps to better understand those. I liked the book and I think it will help my hubs understand a lot about this. He's been great during all of this, but he was great before it started too.

I think changing my diet has been the biggest thing. Yep understand about the sodas, my biggest kicker was the coffee, I would drink 2 to 3 cups in the morning. It was decaf, but still gave me problems, I still want my coffee so I've cut it down to one cup and one cup only, and I suspect I will end up giving that up too.

Just figuring out the food and trying to work around that and plan meals, and watch foods with cholesterol issues is a real pain. I've always tried to avoid high risk diabetes food, we have a strong strain of it in my family, and I would rather avoid having that. And more so now than ever, IC will keep me busy enough. Man, what a life! Big changes and major challenges in learning to cope.

[Amanda 2006]

:welcome: this is agreat place to share stories and learn about your illness.

[Lisa_S]

Diet has been the biggest help for me too, but I'm still doing some trial and error to figure out things that cause me pain. About a week ago I started keeping a log of what I eat, when I urinate, exercise, etc, and what my pain levels are. It makes it easier to figure out what might be causing the pain when you have it written down.

Also, you may want to try a supplement called Prelief (there is a forum for it here). If you take it before food, it can reduce the amount of acid in the food. I find that it helps me with things that are only a little bothersome, but I still have to stay away from the bigger things. Make sure to talk to your doctor about anything you are taking.

[glassd18]

Welcome aboard Mag!! This is the best place to be if you've got IC!!! Ha, I'm a poet!!

Di

[wintersnow]

I am a newbie to this site but not to IC. I was diagnosed 8 years ago and up until the past two weeks I have been able to keep it under control with medications and baking soda whenever I got a flare up. I am having a flare up now that I can't seem to get under control. Tuesday I went to the doctor and had heparin insterted into my bladder. It has worked before but didn't help this time. I am getting so discouraged that it is not going to get better. I am in panic mode. I really need assurance that it is not unusal to have a falre up that won't get under control and that I have to be patient and it will get better. Is there anything I should do that would help. I am presently on Elmiron, Levbid, pyridium (that doesnt' seem to be helping at all),
prozac, hydroxyzine, and I just started taking the Quercetin that I got at the vitamin shop and it has helped the pain a little. Has anyone else had the Heparin inserted in their bladder and how long does it take to work. I am thinking about calling the doctor and going back this week for more. Please help I am in such a panic. Thank you,

[kuntrygurl78]

Welcome to the family! You will love it here. When I was first diagnosed I was on this website 24/7. It made me feel that I wasnt so alone.

I tried the Elmiron, but it gave me digestive problems. The biggest help for me has been Elavil. It has made it so that I only go to the bathroom once or twice at night, vs 6-7 times at night. Im on 25mg.

I am glad to see that you are trying the diet. There is a cookbook on this website and it has a lot of good recipes and other food information in it. I think I am the one in a million that have IC where diet doesnt really affect me. I have the most trouble around my period. I think my IC problems are hormone induced. I did cut out caffein when I first found out I had IC. I was wanting to do that anyway so that just gave me a good excuse to do so.

I bid you good luck on your IC journey. Once you get started on meds and get your diet figured out, you should do well!:welcome:

[magmouth]

Well I'm hanging in there, I got two more books in the mail that I ordered. and I've been experinmenting with some foods, I sure know what not to eat now from it all. Put me right back into a mini flare up. I'm going to work today to get it down.

What have ya'll done about vitamins and other minerals your body needs. I was never a big lover of OJ, but your body needs some vitamine c.