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Need advice from parents with ulcerative colitis

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Ulcerative Colitis
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Posted 10/6/2013 11:55 PM (GMT 0)
Hi everyone,

Just some background on who I am. My name is Julie and I have had UC for over 10 years, starting when I was in college. Overall, I have been lucky - never super sick and mostly manageable disease, especially after the birth of my daughter, who just turned two. However, over the past month, I have been having my first flare-like symptoms since she has been born, and I just am not emotionally or mentally prepared for how to deal with being a mom who is sick. She is becoming more and more aware of what is going on around her, and I am just not sure what to tell her. I want her to have the peaceful childhood that I was blessed to have, where worries were little and taken care of by adults, but I also am aware that I need to tell her something about me being sick. So I am looking for personal stories, hopefully from moms with children of all ages - from babies to adults. How do you tell your child about your condition? How much do you involve them vs letting them just be worry-free kids?

Thanks!
Julie
Posted 10/7/2013 12:13 AM (GMT 0)
Well, I'm not a mom. Does a dad count? I have 8 and 6 year old girls and have had UC for 3 years. So far neither my wife nor I have told them and try to manage around the disease as best as we can. They do notice that daddy seems to have to go to the bathroom a lot. We won't keep it from them forever but so far there hasn't been a need to tell them yet. Hopefully I will go into remission before the need to tell them. At some future point I will tell them anyway, even if I am in remission. They need to know in order to take precautions that it doesn't happen to them, like not taking broad spectrum antibiotics willy nilly unless really needed and making sure to take probiotics while on antibiotics.
Posted 10/7/2013 12:42 AM (GMT 0)
My boys were 3 and 4 when I was diagnosed. We didn't say too much to them about it in the beginning but as they got older it was harder to hide from them. My UC was severe and I had many hospitalizations because of it. Plus there were many days I couldn't get out of bed. I explained it to them the best I could (I remember drawing them a diagram!) Finally my condition got so bad I had to have surgery. That was scary for them but they always took everything in stride. They were 8 and 9 at the time of my surgeries. That was 3 years ago. Now that they are older I always tell them to make sure they tell me if they ever have any stomach discomfort or diarreah, blood, ect. because UC runs in our family. I worry about that a lot for them.
Posted 10/7/2013 12:53 AM (GMT 0)
My daughter was about the same age when I was first flaring and diagnosed. I was lucky enough to not have much pain so it never really stopped me from doing what needed to be done. I just would have to run to the bathroom a lot but she never really knew the difference so it wasn't a big deal. At that age, I don't know that she would understand anything about it or even what it really means to not feel good. My girl is now almost 6 and I don't go into any great detail about it. Just some days Mommy's tummy is upset and I have to go potty a lot. She just thinks its a bug in my tummy from when we told her she probably got some kind of bug and that is why she was going potty a lot one day. Keep things simple and easy to understand.

I have older kids who are 18 and 20. They know what I have and that things could get bad and they know what is involved and that I can't eat certain things and I am on a bunch of meds but I don't tell them more than that. They can google it if they want to and probably have at some point. Hubby is the one who seems to not have a clue sometimes. LOL
Posted 10/7/2013 1:28 AM (GMT 0)
My son is a senior this year. I actually didn't have a diagnosis until my first hospitalization, which was during a State competition of his. I am not sure what they told him at that time, but he bravely kept up the competition without me there.

We do joke about going to the bathroom a lot, he knows my body is attacking itself, he knows I get infusions and a lot of blood draws. He hasn't asked a lot of questions, but I do my best to answer the ones he does ask honestly.
Posted 10/7/2013 2:05 AM (GMT 0)
I like the bug idea. At least until she can understand what an immune system is. Take this as an opportunity to familiarize her with the fact that everybody's different. I don't think it's a good idea to hide the fact that something is out of the ordinary. There's no doubt babies learn behaviors at an early age. But what do I know; I don't want kids for another decade or so. Best of hopes for you!
Posted 10/7/2013 2:20 AM (GMT 0)
I concur with what the others have said. I have a 4 and 6 year old. My symptoms first started when my oldest was less than a year old. I've told them I go to the hospital every once in a while (8 wks) for medicine for my belly. They may notice that I take longer bathroom visits but have never said anything. It doesn't really affect them too much so I don't think they really care. Unless it has talking animals or songs, they won't have a clue what I'm talking about, so at this age, I wouldn't waste my or their time.
Posted 10/7/2013 2:21 AM (GMT 0)
It's hard and different for every age. My daughter is 14 and I found out two years ago. I just told her then that I have tummy trouble sometimes. But now the meds have made it impossible and she now knows I have uc. It breaks my heart because she also knows she has a 13 % chance of getting it! That last piece of info came from her pedi last week during a visit. I don't know how it came up but it did and he shared he has crohns and both his sons go UC.

I was a bit miffed, but it is what it is and I told her people deal.

Just have tummy trouble until they understand. Goog luck mom!
Posted 10/7/2013 2:39 AM (GMT 0)
Can't shield your kids from life. Mine are teens but if they were not I would tell them what is age appropriate. Obviously it's over your childs head at this point to really understand it. At 2 I'd say telling her nothing is appropriate but as she gets older(many years) she should know more. I'd never try to hide it. Kids are tough. Just think of all the much worse things kids deal with like cancer in a mom or dad, death of a parent, divorce, having an illness themselves. They can handle it. I know several friend of my kids who have lost parents either through auto accidents or cancer and they came through it just fine. My nephew had finals while his mom was in the hospital with Breast cancer. He still aced them. In my opinion you can't shelter older kids. If you do how are they going to deal with real life when they are grown ups.

And to DMC2011 I'd get another pediatrician. He could have shared he shared he has crohns but the 13% deal was uncalled for
Posted 10/7/2013 4:13 AM (GMT 0)
Scum, I agree!
Posted 10/7/2013 11:57 AM (GMT 0)
My boys are 3 and 6, (almost 4&7) and I told them my large intestine is sick and sometimes I need to go to the bathroom a lot and right away. They know I am taking medicine to help things get better and that there are foods I can't eat any more. We also told them to tell us if their poop looks strange or has blood in it. With my little guy this is easy for us to check because he still needs some help wiping and my older son has always given us a"poop report" for some reason. I am hoping he outgrows this habit!
Posted 10/7/2013 1:04 PM (GMT 0)
Interesting discussion.

I am a mom, and my kids are 7 and 9. When I was first diagnosed, I think my younger son was 4 and he wanted to me with me all the time so he was in the bathroom with me quite often. I remember once he looked at my poop and said "mom, your poop is red!" I think both my kids knew pretty much from the get-go (I was diagnosed about 3 years ago) because I had a whole bunch of doctor appointments and told them there was something wrong with my intestines. We're pretty straight forward around here, and we homeschool, so I was drawing pictures on the dry-erase board explaining in kid-friendly terms what I knew was going on. They both took it in, said "oh, okay," and went back to playing. :)

Then I asked my (then 8 year old) older son if he would let me have some of his poop. I drew more pictures and explained that I wanted his healthy poop to try to make mine healthy. He thought it was kind of funny and happily agreed. So both of my kids are pretty aware.

I don't see the point in NOT telling my kids what's going on. If they understand, in a matter-of-fact sort of way, that my body may not function normally, it'll just be the way it is. Not too dramatic, not a big hush-hush secret, just life. We all have our imperfections, and this is now one of mine.

From the other standpoint: my dad was diagnosed with UC when I was about 10. I knew he always rushed to the bathroom every morning and had a super stinky bout of D. I just thought it was a gross thing my dad did. I didn't know he had a disease. I didn't know anything about it actually until AFTER I was diagnosed. I told him about it and he said, very casually, "oh, that's what I have." Well, gee, if I had known about it earlier, I might not have been so shocked when I was diagnosed. And I wonder if, as a kid, I would have been more forgiving of my dad's stinky bathroom habits. (mindset of 10 year old kid: "my dad has a very unfortunate disease that causes him to do this" rather than "that's really gross")

My 2-cents
Posted 10/7/2013 5:15 PM (GMT 0)
You grew up with UC and are used to it! I had no idea it exhisted so its been hard for me to understand let alone try to explain it. Esp at first without crying, you are fortunate.
Posted 10/7/2013 6:47 PM (GMT 0)
Whoops, read your post to fast! But i do think if a parent feels his or her kid can handle it, great! I think I am the wuss in my situation! ;-( lol
Posted 10/7/2013 9:05 PM (GMT 0)
I had never heard of UC until a few years ago when I was diagnosed. Seriously. My dad never mentioned it to me until I was 37 years old and told him I had just been diagnosed. I couldn't believe I'd grown up in the same house with him and had no clue that he had anything other than morning diarrhea. He blamed it on drinking coffee. Get up, have a cup of coffee, dash off to go poo... I just figured he couldn't handle coffee, though he continues to drink it.

Anyway, I guess it depends a lot on the kids and the parents. We talk pretty openly about health issues in my family (now in my immediate family with my own kids, obviously not when I was growing up), so if someone gets sick, everyone knows the details. Because of that, the details aren't so hard to handle, because it's just information, if that makes any sense.

Whatever you decide to do, good luck, I'm sure you'll make the right decision for you and your family.
Posted 10/7/2013 9:46 PM (GMT 0)
Yes i am sure the op will as there R a lot of opinions here and she knows her kid(s) best! ;-)
Posted 10/7/2013 11:44 PM (GMT 0)
Thank you so much for all this feedback - this has been so helpful!
Posted 10/8/2013 12:22 PM (GMT 0)
Just thought I would jump in here. I was dx before I had kids, so they have grown up with me knowing of my disease and dealing with it. I tell my kids what I think they should know, and I answer all their questions honestly. It is a real bummer for a kid to plan a day to the zoo, only to be told that I can't take them. They know I am sick and they are more compassionate kids for it. They get disappointed, but they understand. With that said, I try VERY hard to make sure that my disease does not interfere with their activities (even if that means waking at 4 am so my bowels are ready to go when we have an 8am game). I don't think my kids worry about it, but they do help out more and are very compassionate when I am not feeling well. YOu are their mom, you will know what they can handle and what they can't. Whatever you decide to tell them will be the right thing.
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