IC can be passed on

[darlene]

Those who know me on this board, know that I have always believed IC is a genetic disease. I have been away for a while, grieving about the day I had hoped would never come. My 32 year old daughter has developed IC. I would have loved to be wrong about the genetic factor. To say I am heartsick about this development is an understatement. I feel so guilty, for giving her this horrible disease. All I can do at this time, is hope researchers speed up their work for better treatment and finally a cure. I have had IC since 1969, crohn's disease since 1986, and diabetes since 2003. It has been decades since I have had a painfree day. It has been so long, that I no longer remember what being painfree feels like. It has been a tough life, but nothing has been tougher than knowing I passed it on to my daughter! For me, the question , can IC be passed on, has been answered!

[charmedx3]

Hi Darlene, I am sorry to read of your daughter having IC. I have a 9 yr old daughter and worry about her possibly also going thru the same pain as myself. My younger sister has just started showing signs of IC also. The only thing that helps is to know that they may not have to go thru the years of being misdiagnosed or having un-necessary surgeries because of us being able to give them advice or direction as to what treatment to seek.

[angelaharrell]

I know that researchers are working on trying to prove a genetic link. Some IC'ers have children that have no sign of IC trouble, but my own daughter at the age of 17 is showing symptoms. Why some and not others? I've racked my brain over this and can't seem to find a logical answer.

Please don't carry the guilt of passing this on. There was absolutely no way for you to know this would happen. You guys will battle this together and grow stronger as a result of supporting each other.

Is she on our message board? I'm sending you both hugs and praying that you'll both be okay. :grouphug:

[tigger_gal]

(((darlene))) so sorry your daughter has IC, I too believe it is gentic. My mom, her sister and I have it. we also have 2 cousins on moms side that have IC.. I hope your daughter joins us for support.

[ICNDonna]

I know there are some studies going on to study cases where there is more than one family member with IC. Hopefully one day soon they will have some statistics. Fortunately I'm the only one in my huge family with IC. Both of my parents came from large families and most of their siblings had at least five children so I have a fairly large family group --- and I am the chosen one to have IC.

Donna

[creatingkarma]

Darlene, it is not your fault! Please don't blame yourself! That just breaks my heart & it is too much guilt for one person to carry. My dad is diabetic & if I end up with it, I would never blame him for it in anyway. I'm sure that your daughter is not blaming you, so please don't blame yourself. We cannot control our genetics or pick & choose which genes get passed on & which ones don't. I'm not glad that your daughter has IC, but I'm glad that your daughter has a caring mom like you to battle this disease with. You will be understanding & compassionate, which is a lot more than a lot of us here get from our families. I wish you both the best of luck. By the way, I have a cousin with IC.

[poetgirl]

I'm so sorry to hear your daughter has IC. Fortunately, she has you to help her understand and cope with the disease! And please, send her to the ICN boards! She'll get plenty of information and support here. It's really hard to have this disease and not know anyone to talk to about symptoms or lean on for support. And given the advances in treatment, your daughter may have a much better chance of living a pain-free life. I wish you both much luck as you go through this journey together.

Don't feel guilty about passing this on to her; be grateful in the knowledge that you can help her cope with and find treatment options for IC that you didn't have access to when you were diagnosed. Moms can't always make the pain go away but they can help make a bad situation better just by being there and sharing their love and wisdom! :)

:grouphug:

[dancemomof2]

Darlene hugs, I agree somewhere it may be genetic, but not your fault at all. My grandmother had IC, my aunt (her daughter) then mine started roughly 10 years ago diagnosised though in 2002, and just a couple months ago my mom was diagnosis and never had a hint of IC trouble until 2 weeks beofre her diagnosis. So to say it was passed down is kinda hard to say, you would think my mom would have had trouble sooner then I did. Nothing you can blame yourself for, just luck of the drawl. Sending hugs from one daughter & mom with IC to another.

[Silverfox]

I'm so sorry that your daughter also has IC. I agree with you in thinking that IC can be very genetic. In my family it has turned out that my Mother, and both my older and younger sister have symptoms. We all came down with the symptoms at different times of our lives. My symptoms began as a little child. My Mother and sisters started later but all have the same symptoms.

For several years they would not tell me or my husband that they also had the same bladder symptoms, they were very scared, as they saw what I was going through. Finally, they confessed, and boy was my husband mad, :cussing: as he thought, that I would not have had to go through so many unnesscessary treatments and surgeries had we known the truth.

I just hope that you both will consider contacting the U of Maryland who are doing the genetic study on IC. They will pay the cost but are asking for families that have more than one close blood relative to participate. Please call them and ask to speak with Amy. They are hoping to study families from the US and Canada to study the DNA and they hope to find a gene or gene's that may be the cause.

They have a few questions to ask, and you will receive a kit that you take to a blood lab near you and they will send the blood samples back to the researchers. They also would like a sample of urine that is prelabled and Fed Ex will pick up an deliver for study.

Here is the number if you choose to be in the genetic study. Toll-free: 1-877-STUDY IC

[green_the_fish]

Yeah, I've read the preliminary results of some studies that indicate that IC has a genetic component. I believe it's definetely true.

From what I've heard, my grandmother on my mother's side has had undiagnosed bladder pain for decades. I've never actually met her, because she lives in South America. From what I know of her symptoms, I think she probably has IC. I also think I inherited it from her.
I also think that my bipolar disorder was inherited. From what I've heard of my father's side of the family, many of them have severe mental disorders. For example, my uncle spent months in an a mental hospital due to severe mood swings, inablility to sleep, frequent panic attacks, and a suicide attempt. Although he's still undaignosed, those sound like the symptoms of bipolar disorder. I've heard that my father also has mental illness symptoms.

You know what, though? I'm not angry at my mother's side of the family for "passing on" IC to me, or to my father's side for the bipolar. I know that I also inherited many good things from them. My mother has a good metabolism, strong hair, and strong nails, as I do. My father could always score quite high on IQ tests and similar things, and I can too.
No one has perfect genes. Sometimes we are very hard on ourselves, much harder than those around us are on us. I don't think your daughter blames you for her IC.
Maybe you should look at all the good things your daughter inherited from you. Does she have your bright eyes? What about an even temprament or clear skin? I know its easier said than done, but please try to focus on all the genetic gifts you've given her. I'm sure there are many.

Good luck to you and your daughter!

[massagedoula]

Green,
I wanted to say how much I appreciated your post. I have been struggling with the idea that I may pass IC on to my children, when I have them. I don't know why it took reading your words to make me realize, but now I know that I should not worry about it. You are wise beyond your years. (Maybe you hate when people say that...When I was 16 people used to say it to me and I hated it....)

I see that you had to stop hydroxyzine...What happened? How do you feel now compared to when you took it...Do you see a difference in your symptoms? You are doing very well from what I remember, right?

[Babs RN]

I have to agree with green and my favorite midwife in training. If I had only gotten pregnant later. Rats. I have a child so my perspective is this--she is beautiful not only aesthectically but is a loving, caring child who gives and receives love openly. I don't know if I passed the IC, I did pass a clotting disorder but by the time it would likely effect her I am hoping gene therapy has improved to the point it can be arrested. Do I feel guilty, kinda, but had no idea because I didn't know I had it until I had a stroke 3 years ago at the age of 32. Green, M.D. I was always told I was smart beyond my years and both of you are as well. You will both make awesome parents and awesome choices.

Hugs,
Barb :grouphug:

[bigred]

My son has been a bed water and other problems. My husband wanted him to tell the doc. when he had urethral stricture surger this summer that his mom has IC. His doc. would have known that because my doc. assisted with surgery. I told my husband not to lable him. All we can do as parents is pray it doesn't happen to any of our families.

[Dixiefireball]

I honestly believe my mother had it and it went un. DX. before her dealth (cancer) I had never heard of IC until i was dx with it, but my Dr. honestly believes my son has IC also, but he can't see him because he is on medicaid and his patrice want let him see medicaid patients unless they have some type of second inc. method.
My son tonight is having systom of IC. I'm making him drink lots of water and use my heating pad. If he isn't better by tomorrow I will have to take him to the E.R for treatment. I pray it isn't another kidney stone.
but to me i really think its an ic flare i know boys (men) have different systom then us woman but i've read a lot about it.
brandon ate pizza at school today then he has been stressed out majorly today.
I pray my other children never have to live threw this I wish he wasn't having to either, but i honestly believe he has it also.

[massagedoula]

Babs,
Thank you...your words were so sweet and touching....
To the others:
I pray that your children do not have IC. Perhaps we who have IC are so hypervigilant about it that we may be overcautious. Everytime I have a friend who had bladder pain/frequency and takes antis w/o getting a culture...I wonder "what if she is developing IC?" I have one friend who is a quadrapelegic and has an indwelling catheter. He always has UTIs but leaves them untreated for the mosr part, mainly because he can't feel them the way you and I can, though he can still feel the deep pressure that we all hate. It makes me get so frantic with worry that he will weaken his bladder and develop IC...

[Babs RN]

I have to agree with my buddy to the north. I have a friend who since I have been diagnosed that if she goes one extra time she is sure she has IC too. I think you can become hypervigilant not to include the fact that something maybe wrong other than IC but have the same symptoms.

Hugs,
Barb :grouphug:

[sleepyangel30]

Sometimes I wonder if my older brother have IC, he have problems with his bladder, he have frequent urination but no pain. he been to doctors they said they can't find anything wrong and so forth.

[green_the_fish]

Hi everyone! Thanks to Barb and Massagedoula! :)

Yeah, when I first found out about the genetic component of IC and my family history of it, my first reaction was, "hm, maybe I shouldn't have kids when I grow up" :(
But then, when I thought about it, I figured out that I had been looking at the situation in an overly negative way.

About the hydroxyzine...
I decided to try Levbid a little while ago, because I was told that it might help my severe menstrual cramps as well as my bladder. Although my bladder symptoms are still only at around a 2 or 3 on a scale to ten, there's always room for inprovement. Apparently, hydroxyzine is known to interact with Levbid, so I had to go off hydroxyzine to try Levbid.
Well, Levbid is in the same class as Ditropan XL, and I did not have a good experience with Ditropan XL. I had to stop it after a few months because I developed severe side effects. I didn't mind the dry mouth at first, but then it evolved into a dry throat. After a while, my throat hurt constantly and I had difficulty eating and swallowing. I went to my GP for what I thought was strep throat, and that's when I figured out that I was actually reacting to Ditropan.
So, needless to say, I was wary of Levbid. After being on it for about a week, I already felt some throat pain. This concerned me so much that I stopped immediately. It wasn't intolerable or anything, I just didn't want it to snowball back into the side effects I had on Ditropan.
The thing is, after a little over a week of being off of hydroxyzine, I haven't really felt too different from when I was on it. I think what I'm going to do now is wait and see if I flare. If I do, then I'll go back and get more. But, if I can get away with not taking it, then that's one less med to remember.

Well, I hope everyone and everyone's kids are doing okay!

[A.J.]

I have wondered for a long time if IC is genetic. No one in my family has had any problems whatsoever with that sort of thing, except myself, of course. My brother has a very, well, active bladder, and urinates quite frequently, but never has pain or discomfort. He just drinks a lot of water and liquids and is always using the bathroom! He tells us he goes a lot, but no doctors have ever brought any problems to his attention. From what I have read, it seems that there are some similarities in families. I find that strange and hard to understand. But the whole thing is hard to understand, isn't it? One area that plagues me is why it's much more common in women. I'm not sure if we've talked about that, but if someone could direct me to a thread or something, I would really appreciate it.

Anyway, Darlene, I'm so sorry. Please do not feel like it is your fault. You gave your daughter life which was the most beautiful thing you could possibly do. You just have to get through this together.

[Janie Miranda]

I think my mom has IC - she has all the symptoms but has been diagnosed with "overactive bladder", my aunt (mom's sister) is diagnosed with IC, my sister also has symptoms and my grandmother (mom's mother) did too but she has passed on now. I'm participating in the University of maryland's genetics study and I would like to also encourage anyone who has other family members with IC to join it too. They believe that if they find the gene that predisposes people to IC they may be able to figure out how to treat it more effectively.

I am so sorry that your daughter has been diagnosed with IC. I hope she quickly finds effective treatments that help her.
hugs,
janie

[marsi4]

No one that I know about in my family has IC. I think in some families there is a genetic component, but in most there isn't. Why does it affect more women then men? That's a good question. Wish I had the answer.

Marsi4

[Debgail]

((((((Darlene and daughter)))))))

I am so sorry your daughter has ic too. I feel bad for you that you think it is someway your fault that she got your genes. I know how you are feeling, my mother is 62, and I am 43 and I have had ic for years. My mom just got dx wth it too, and Im the one feeling bad for her! Like I gave it to her because I got it first LOL!!!!!

I very strongly agree that ic is genetic and or related to and auto- immune disfuction that happens when our bodies have had enough, then ic presents. Muy own opinion of course.

I hope you and your daughter are doing well and had a good christmas.
Hugs, Debbie

[massagedoula]

No-one else in my family nor no-one else that I have ever met (outside of these boards) has IC, to my knowledge.

[hiphuray4peas]

Right after I was diagnosed (same office visit!) my uro started questioning my mothers bathroom habits. She didn't think anything was up.... the more I look at it, she atleast has some huge bladder issue whether it's IC or not I dunno. I'm worried because she's had so much crap happen to her lately that the last thing in the world she needs is IC. She's having a hysterectomy within the month because of issues w/ PFD and my uro said that if she has IC the procedure could cause a massive flare. I guess I'm just scared to begin with. I love my mommy...
In the end, no matter what I love her so much that I don't care if she passed some minor genetic imperfections. She gave me so many wonderful things that have nothing to do with genetics that totally make everything else worth it. She taught me to value myself, how to be compassionate, how to treat people how you want to be treated, how to express my self, THAT I CAN DO ANYTHING I TRY, and how to go about daily life.
As I see it (I'm not a mother myself) Motherhood isn't just about passing on a gene but teaching your child how to create themselves, discover how to live life throught thick and thin, and the occasional lesson on how to tie your shoe.
Yea, okay so sometimes you get the short end of the stick for emotional or physical things.... but thats why we learn coping mechanisms and branch out beyond ourselves to form bonds with other human beings.
Bottem line my mom and I may have something that sucks in common but the more important thing is that we have our lives in common and that we, no matter what, are still each other's support.

[bigred]

good attitude. My mom is one of my friends. We talk a couple of times aday. My mom and dad are in much better health than I am. I have two married children, and thats all I have. If I gave them anything in life it would be to love life. Be compassioned to people around them. Sounds like your on the right track. Just love that mom they can be great friends.