Skip to main content

I was diagnosed with UC at age 29, I'm 31 right now and had ny takedow October 2012. Dr had told me that I probably had UC since highschool, but I never saw the symptoms bad enough to have told anyone. I do remember always being gassy and bloated and passing blood throughout highschool, but I never said anything.

My worry is that my 5 and 2 year old are at Rusk for this. How likely is this true and anyone diagnosed have their kids diagnosed too?
Original Post

Replies sorted oldest to newest

If one parent has UC the LIFETIME risk is about 10%, meaning a 90% chance they will never get it. If both parents have it, the risk goes way up to 30-50%, depending on which study you read. There is more of a familial link with Crohn's.

Both my husband and Ihave UC. One of our two sons developed UC when he was about 20, a roaring case of pancolitis. Our personal history helped him get immediate treatment (colonoscopy and IV steroids within a few days). There was no screwing around wondering what this was. Plus, we taught our sons to besure to let us know if they ever had any rectal bleeding, and they knew of our diagnosis.

He's fine now, in full remission since that first flare, and that was about five years ago.

Jan Smiler
Yeah, we keep it light. It is a running joke around the house, who gets to have the CCF "I gotta go NOW" card. We never rent a vacation house with only one bathroom, etc, etc.

My son was a champ about it, and I was amazed how quickly his initial flare was reversed with IV steroids and antibiotics. I spent a month in the hospital when I was first diagnosed, but that was after about six weeks of screwing around with "maybe you just have a bug, or a fly landed on your salad" type nonsense. My weight went down to 89 pounds. They didn't even have colonoscopy back then, just barium enema and rigid sigmoidoscopy. My son only lost a few pounds before he was back on his feet, and was able to go to Hawaii with us a couple weeks later.

But, I think he was lucky, because that isn't always the case, even with today's treatment protocols.

Jan Smiler
Isn't it the biggest fear a parent can get is when they find out that their child is diagnosed with the same illness. I had a hard time with it because when she started getting sick I was in the hospital going through my dilemmas. As I explained when I first joined the forum. I had gone in er in Nov. 2011 started with complications to my kidney, then the ovary they forgot to remove with my hysterectomy a year before. That's when things got ugly my body rejected the Jackson Pratt and well infection and all my abdominal stitches opened and my bowels surfaced all up to the opening with a fissure so all stools were coming out from my abdomen. Pretty scary for your kid to witness and well me being stuck there waiting to repair this delemma more complications occurred and lead us into the new year 2012 she starts complaining of cramping and diarrhea. Fortunately for me my husband took care of it. We definitely did not want her treated at the hospital I was at so drove across town to see another dr. Knowing my history ordered all kinds of tests and diagnosed herr with crohns. The scare this poor girl was feeling, had no words all she remembers of me is a sick mom
That's gone to hell and back surgery after surgeries with one complication after another one . Being in the hospital not being able to hold her hand when she went through those horrible tests we all know of broke my heart, and this guilt that I feel about her inheriting it from me.I'm scared that she feels or thinks that she's gonna end up like me kills me even more. We are very close and well shes seen everything that's happened with me and is well aware of the medical terms and percedures and that helps but also makes her nervouse because she knows what they consist of. My story has been and is a little complexed and had medical errors done , makes it a little scary for her,shes had to witness to much at a very early age, this doesnt helpher,but with our support and the support of her GI we try to be supportive and informative to help ease her mind.Her GI put her on mezavant 2capsuls morning and night.I just hope that she stays in remission for the longest time . If only we could take the illness from our children and take it for our self, how wonderful would that be. Unfortunately life doesn't work that way. The love we feel for our children is so unexplainable! Anyway for all the parents living with illness and having sick children my heart goes out to all of you. Your all in my prayers may God be with all of us through these difficult times in our lives. Let's keep strong and positive Love doesn't cure but it sure helps to have it in our lives!!
So true LDL... I too good age stays in remission... I can't imagine what you all were going through and its a big fear of mine. My daughter about a week ago complained of severe pain while going poop and was crying but wasn't constipated. She said her stomach hurt, it looked big and I was so nervous as she has occasionally had blood on the toilet paper.

God bless you and your daughter, this crud is the worst.
I was diagnosed with UC at age 40 (though I may have had it for 15 years!). My daughter is 40 years old this year, she has inherited my psoriasis, my depression, but not (as yet) my UC. She is very tall (unlike me)and has huge feet (but not me!!)

My granddaughter has no sign of anything untoward, is not very tall - but her feet are even bigger than her mother's !!

What will be, will be, I don't think we have anything to feel guilty about
Glad to hear the risk is low for one parent with UC. It has always been my biggest fear and, for a period, I considered not having children so UC would die with me.

Now I quietly pray and carefully watch. My child is also aware of my history, though I try to keep it relatively light. I make sure we keep close tabs on any digestive oddities, as well.

It is very important for our children to have good knowledge of our condition so, if they or their own children are faced with it, treatment is not so delayed.

It was 5 years before the severity of my UC was properly diagnosed. By then the docs couldn't believe I was still carrying on a relatively "normal" existence....at least as it appeared to the outside world. Like Jan, by the end, I was down to 89 pounds. Scary stuff.
I don't think you have too much to worry about. The odds are in your kids' favor. Although in respect to full disclosure I have seen %s between 10% and 25% if one parent has UC. Depends on what survey you look at. Having a 10 year old who was diagnosed with UC when she was 6 I like to think it's 25% so I can feel like she didn't just end up with that much dumb luck Smiler
Looking back and my childrens eating habits - the one who had UC and later a J-pouch = had spastic colon when she was a little one - I had to use vaseline - her diet thru the years was NOT variable - she was never one to venture into foods - I do not remember her being a fruit or vegetable person - and I have always thought about what if she had eaten better - none of her sisters or brothers have any problem - well one leans to white bread and peanut butter with chicken noodle soup
Foods have minimal connection, at best unless there is a known disorder (celiac disease, for ex.). Many people have tried to make a connection and perhaps there is one... but you an drive yourself crazy trying to diagnose / treat with diet. The underlying problem is auto-immune, and there are so many triggers for IBD. Most point to bacteria, which diet can affect. But again, until they understand diet w/ bacterial growth w/ individual genetics w/ a multitude of other things, we will not get to the combined root cause.
I know for my family eating habits from youth has a lot to do with it One adult child did not like vegetables or fruits. Stuck to white bread and peanut butter thru college.Always constipated since baby. I ate pretty good foods but never enough liquids. Ended up with diverticulitis. So I always wonder if it is the family's eating habits that provoke?

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×