IC and other family diseases?

[melanie626]

I didn't know where to post this, but does anyone have IC and then have others in their family that has IC or an Inflammatory Bowel Disease? I have IC, but both my sister and father have Ulcerative Colitis....just curious as to other peoples histories...
Thanks-
Melanie

[Katrina]

Hi Melanie! IC is not normally in the family...a few people I know seem to have it within their families but this is odd far from the norm like is with Ulcerative Colitis. Now me...I had Ulcerative Colitis previous to my colon being removed and no one in my family did nor has anyone since ....no one in my family has IC either out of everything that I have only allergies, Epilepsy, and Rapid Leg movement (Rapid leg movement in my family almost everyone has) seem to be in our blood.

Personally if there genetic connection to IC I suspect it is something that makes us more subseptable and could possibly cause other things depending on our lifestyle. In some cases maybe both parents gave their child this gene and that made it more definate.

I would like to add that IBD isn't even that common in the IC family even though they are very similar it far from as common as some other diseases amoung us.

[ICNDonna]

Unless it's distant cousins, I don't have anyone in my family with bladder problems. My father lost his battle with bladder cancer many years ago, but he is the only one I know of with any kind of bladder disease.

Donna

[macylynn]

I'm on my own in my family. I have to explain to everyone what IC is and what it means for my eating habits. I never even wet the bed when I was little. My mom still tells me to this day that when I was 9 mos. old, I started staying dry through the night. I never had an accident the whole time I was potty-training. (I'm 27 now, I was diagnosed with IC when I was 25.)

My little brother did wet the bed until he was 10. So did 3 of my 4 cousins on my dad's side. Interesting....

[lorie-belle]

I seem to be on my own in the family also. Nobody has bladder problems. Nobody has fibro. My grandmother did however have colon cancer, and I do have colitis. I think colitis is a hereditary disease or something. My dad has colon problems and numerous cousins have colitis, ulcerative colitits etc. sometimes I think my mom might have had fibro but she obviously handled it better than me. Is anybody out there a premi baby? I have often wondered if all of my problems are because I was premature by 7 weeks! Maybe the bladder never really developed properly?? Anybody else out there a premi?

[K9wife]

Now MY family is an autoimmune disoder nightmare!!! LOL I have IC, my mother is crippled with rheumatoid arthritis, my older sister died from Kartagener's syndrome (immotile cilia syndrome) at age 45, my daughter has Crohns, my first cousin has Lupus.....let's see, did I miss anyone??!!?? My Mom's rheumatologist is convinced there is a common link and would love for our family to be studied, but we live WAY away from any big facilities, and nobody else (Drs) seem particularly interested.

[dolphinfire]

I am the only one in my family too. My mother has problems with going to the bathroom alot but thats cause they have her on waterpills. Most of the problems in my family have been cancer, uterine, ovarian, prostate only to name a few. My mom has high blood pressure and thyroidism, My father has digenetive disc disease(which is hereditary, gram has it too) and high blood pressure and high cholesterol. All my kids are healthy, thank goodness.

[Ginny]

My mother and I were both diagnosed with Ulcerative Colitis years before our diagnosis of celiac. I believe it was celiac all along. I am the only one in my family with IC.

Ginny

[Imustpee]

I am the only one in my whole extended family with I.C. None of my friends or any of their family have it. grrrrrr

[HGC]

I have IC and endo and 2 of my brothers have ulcerative colitis so I think there is some family connection especially since they are all autoimmune disorders.

[emilyrose197377]

I have ic and also Pernicous anemia an autoimmune disorder

[darlene]

I have both IC and Crohn's colitis. They have a lot in common. They are both chronic inflammatory diseases. They both can cause pain and frequency, urination with IC, and diarrhea with IBD. Living with both is a nightmare!

[rachelm]

I was the first diagnosed with IC but my mother has lived with bladder frequency and incontinence for over 12 years. She thought it was normal and that all aging people went through it. She also believed that IC caused debilitating pain for everyone as it did for me. When she had her hydro cysto last year they discovered bleeding and now she's on Elmiron and Detrol and is doing wonderful. As we've discussed IC and heredity she explained that her mother had tremendous pelvic pain and would grab her side often. She also had a leaky bladder so we think she very well might have had IC too. One of my mom's sisters has all the classic IC symptoms but isn't diagnosed. Because of the bladder problem prevelance in my family I think there definitely could be a genetic link for us.

[Sharon]

I have a brother and an Aunt with IC like symptoms, but no official dx. My brother's symptoms increase when he has certain foods. Both my brother and I have IBS also.

[SurferGirl]

my grandmother is still having bladder infections to this day.
my other grandmother has kidney problems.
my mom had a meningioma (brain tumor). new research shows a link between that and hormone levels. they're starting to use hormonal drugs to treat meningiomas. (they say IC may be caused by hormone imbalance too). i wish i were a dr. so i could do research on it.

p.s. -Elmiron's side effects: 1) it can cause brain hemmorhage and 2) make it so your blood can't form a clot to stop bleeding. (pray i don't have that b/c i've been getting the worst migraines, all of a sudden, (after being on it for 3 years), and vertigo, nausea, diarrhea, weight gain, sweating, dry mouth). they say those side effects are "uncommon". (not true w/ me!) they also say to see your dr. if you have nosebleeds & high blood pressure (which i have), and if you have bleeding problems, and to have your liver checked. i get insurance in Aug., so i'll be able to go - finally!

[mhwatters]

I had a double cousin who had IC as well, before see was found overdosed in her bed back in September. See had a very bad case of IC, as I do. Our symptoms were pretty much identical before she had her bladder removed. Her dad and my dad are brothers and her mom and my mom are sisters. As closely related as you can be without being brothers and/or sisters. It makes it hard to tell which side of the family the disorder comes from. I am convinced that there is at least a predisposition of getting IC that is hereditary. Because of this, it took me a long time before I decided to have children. It was a hard choice and I still hope and pray my children do not wined-up with the disorder.

Mike

[Silverfox]

For any here that have IC or painful bladder syndrome you may be eligible for this study! go to this web site http://icresearch.umaryland.edu

or e-mail: studyic@medicine.umaryland.edu

To be iligible you must also have a first-degree blood relative (parent, sibling, or child) with IC painful bladder syndrome, or urinary symptoms similar to yours. You must be in the USA or Canada.

In my case I have had painful bladder syndrome since I was a little child...
As time went on and my older sister began having bladder symptoms. And then I learned that my younger sister was having the same bladder symptoms. Finally, my Mother was diagnosed with overactive bladder and they have her on Detrol.

At first, when I was so severe no one in my family would admit that they were having bladder problems. They saw what I was going through and it terrified them. My husband called them to find out if they had a bladder problem, they first told him that they had no problem. They lied because they were so scared.

Today, and ever since my husband found out that they lied he will not forgive them and so he will only communicate now when we are visiting our Mother in a nursing home. This disease has caused our family to be very disfucntional for many many decades. I am so tired of living like this. My husband is always stewing about what liars they all were and he feels anger and bitterness. :mad: He says had they told the truth, I would never had gone through all those surgeries and painful expensive treatments.

Family secrets are not good, try to share this with your family and especially the kids.

Always treat others the same as you would like to be treated! :angel:

We have 4 women in my immediate family who are affected with painful bladder syndrome, I just want to end my family secrets! My Mother, older sister, me and my younger sister all have bladder symptoms and I was at first the most severe but my younger sister is getting worse daily.

When I visit my poor dear Mother in the nursing home, I sometimes find her sitting in front of the television set, and under her wheel chair there is often a big pool of urine, as they don't care and just leave her to sit in it. It's too much trouble to help her get to the bathroom. They call me the mean daughter when I complain. Just makes me so mad. :headbang:

Also, wanted to mention that our other family disease is Hypothyroidism, that in addition to the bladder we all 4 of us are being treated for. I believe there might be a strong connection. I refuse to keep it a secret!

My family is in the U of Maryland IC study to search for a gene(s) (Magic for short) If this fits your case please contact them and get involved.

:woohoo:

[FibroMummy]

My Father has Lupus & Diverticulitis, my maternal aunt has CFS, my maternal cousin has Crohns, I have CFS, FMS & now it looks like I have IC as well :(

Lisa