Newly diagnosed - looking for help for my mom

[ingrid]

My mother has been recently diagnosed with IC (3 months ago), after a long history of misdiagnosis and pain. She has had a hard time with this. She lives in Houston but is visiting me in Los angeles for the holidays and so i can help take care of her for a bit while she adjusts. She has flare ups about every 4 days that last for a couple of days. During the flare ups she becomes anxious and depressed, and spends most of that time in bed. Is that the normal frequency for the flare-ups ...it seems like they are happening too often - she barely gets a break. Also- they have prescribed her Pyridium Plus but won't give her anything for the anxiety etc. Is anxiety and depression common with this as well when experiencing the flare ups? I want to help her and feel lost..i don't always trust the doctors to guide us in the right direction. Any insight would be a godsend. I am looking for good doctors in both La and Houston for this condition also! Thanks alot

[kelly McC]

Welcome,
First how wonderful of you to be helping your mom. IC can be hard for some to get diagnosed and or treatments. Support from friends and family is a essential part of therapy. Here is a link to the handbook http://www.ic-network.com/handbook/
there is a wealth of information. If your mom has not tried the diet it can help there's information in the handbook.There are many treatment options available and they are listed in the handbook too. Things that can help are diet,ice packs, heat pads,pyridium plus or pyridium,heating patches for just a few. There is a doctor locator in the handbook too you can search for doctors in your area or your mom's area.
http://www.ic-network.com/handbook/mdlocate.html . Anxiety and or depression can happen from chronic pain as well as other things. I would suggest a second opinion unless they had a reason for not helping her ? I suggest keeping a journal of he rpain, voids, symptoms and printing up some of the info from handbook so she can take it along to her next appointment.. Good luck and let us know how shes doing ?
Kelly

[Dixiefireball]

:hi: and :welcome: to the icn family.
to try to answer some of your question yes depression is normal with i.c until she gets a handle on it.
is she taking anything for pain?
a heating pad or ice may help she really needs to get on the I.C diet you can find that at www.ic-network.com/handbook this may help a lot of flare ups also drinking a one tsp of baking soda to a eight oz glass of water may take some the acid off her bladder if she has ateing anything or dranked anything full of acid also a tums or prelief could help.
has her doctor talked about elimron or cocktail treamtents dmso treatments? these help coat the bladder.
you can read about that and other treatments at the same website.
I hope some if not all this information helps your mom its hard to see our loves ones in so much pain.
these flare ups she is getting is normal :( when she gets on the right meds to control it and controls her diet things should get better.
sending you both hugs and prayers
Rhonda

[Deana]

I've recently been diagnosed with IC too, and know how your mom feels. I just found this web site yesterday and am relieved that there are others who I can turn to for support. I don't understand how this IC is going to affect my life long term and thus I like your mom feel depressed. I am considering taking an antidrepressent soon if I can't cope with this on my own. I am hoping this web site will help me cope as I read what others go thru and say. I encourage you to have your mom do the same.. The best thing for her right now is emotional support by you and others like the people who have and understand IC. Then of course we need to find MD's that can help us cope with the physical aspect of IC...the pain, treatments Etc. I'm still learning how to get the help I need. But I know through others that It's out there and to not give up... So plz encourage your mom to be part of this IC support group.
I know I am so grateful that I found this web site.

[VickiB]

Welcome ingrid, glad to have you join us! Your Mom is one lucky person to have you in her corner, looking for answers to help her deal with her IC.

Depression & anxiety seem to come with the territory of IC diagnosis. Especially when there's lots of pain involved. Hopefully with good treatments your Mom can find her way back to a full, happy life.

I wanted to add that there are also some over the counter medicines available which may ease her pain. Azo and Uristat are two brands that I can think of. When I just plain can't take the pain anymore, I resort to their use. I don't believe they're intended for long time use though.

Big hugs for you & your Mom,

Vicki

[ICNDonna]

I'd also like to commend you for being supportive for your mother. That alone can mean a lot.

I agree that helping her with diet is a good first move. It can be a real challenge at first. I also agree about antidepressants --- they help in two ways: there is usually at least some depression associated with an IC diagnosis, and second, antidepressants are frequently given for pain control because they interfere with the pain receptors in the body's nerve system.

There are two books I recommend for both you and your mother to read. The first is titled "The Interstitial Cystitis Survival Guide." Written by urologist Robert Moldwin, this book is written so it can be easily understood without going to medical school. I think every IC patient should have a copy. The second book is a tremendous help with diet. "A Taste of The Good Life" was written by IC patient Bev Laumann and not only gives some insight into why the diet works, it has some excellent recipes.

My IC was diagnosed thirty years ago and I would like to assure you that there is life with IC. It may take a while to find which treatment options work best and which foods and drinks are a problem, but most of us do get there --- and your mother will too.

Sending warm encouraging hugs,
Donna

[SharonA]

Hello and :welcome: to the ICN...

I am going to agree with all the others here and tell you how wonderful you are to be so supportive of your mother and all that she is experiencing.

Depression is normal for someone who is newly diagnosed with this disease. IC pain is terrible and, until we find the right treatments, can be totally debiliating for some. It is so important to have supportive, understanding people around you, especially in the beginning.

In time, it is very possible to live a normal life and do the thing you enjoy doing. I am one of the fortunate ones who is able to do this despite having IC. It may take some time to find the right treatments and meds that help, but many of us do. It is very important that your mother understands that her life is not necessarily going to be the way it is right now. There is help out there. There is hope... :)

[edie]

Ingrid,
Tell your Mom to hang in there. There are three books that you need to order from your bookstore for your Mom. They saved my life!!! The best one and my urologist loved it is "You don't have to live with Cystitis" by Larrian Gillespie, M.D.---"To Wake in Tears" by Catherine M. Siimone"------- and "The Interstitial Cystitis Survival Guide" by Robert M. Moldwin, M.D.
Knowledge is Power with this disease! The diet worked best for me. If I stay close to the diet, I do great! If I eat anything with acid, I burn and pee!!!
There are different degrees of this disease. Thank God I had the mild form. but I almost lost my mind when, first, diagnosised! Yes depression is terrible, but being calm will help alot, so get her to ask for anything to help to stay calm. I use valium on occasion, not often. There is hope around the corner! I haven't had a flare in about 2 years!
God Be Blessed.
Good Luck and God Bless you and your MOM
Edie