Do you ever feel that your kids take advantage of their Crohn's?

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izzi'smom

izzi'smom

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Often, dd will get up from bed three times to use the bathroom. She goes each time, but I often wonder if she is abusing the "If you have to go, you can always go" rule. She can usually hold it during car trips but often has to go during meals. Occasionally we have to find a bathroom while we are out, but this generally happens at home (although it may be that she is just more comfortable here...she has expressed fear at public restrooms in the past)
Anyone else experience this?
It's not as if I'll tell her she can't go...I'm just wondering.
 
I find i go to the toilet more at home. Mainly if i need to pass gas and not quite sure if any D will come out (whereas a lot of times when im out i dont get that choice), or if ive got a bit of stomach pain or bloating i try to go to the toilet to see if it goes away.
 
Hi Angie! I was dx as a kid (age 8), and I can vividly remember having to go like every 20mins when I was sick at home, but making it for a 45min car-ride to the hospital - even when I was "better" I would have to go a lot more at home then when I was out and about... I have no idea why. It's still like this with I get d/loose stools with my Crohn's flares (not that often, as I tend to c), which I think is strange... since it's "safe" to go at home and I always have access to the toliet, wouldn't I have to go less since I'm not stressed out about making it????

Anyway, just wanted to let you know that what you described with your daughter sounds "normal" to me.
 
I only poop at home. I could have entirely full bowels in public, and not go. But when I get home, even a little corn niblet in my colon, and I've gotta go!
 
I always felt better going at home. I was also diagnosed at age 8, but had symptoms from when I started walking.

At home I'd be up at all hours of the night to use the loo.

I also spent serious bathroom time in the morning before school so I wouldn't have to go while there. I'd sooner call home sick so I could use my own bathroom before using the ones at school. But that rarely happened as by high school I had my body trained to eliminate as much as possible in the morning.

While I'd like to say she might be playing you a bit (she's young, I have a 7 y/o who also has some digestive issues and uses that to be out of bed), but I also clearly remember lining up for the bathroom in the middle of the night because my mother was in there - she also has Crohn's.
 
Awww...thanks to you all...good point that I feel more comfortable at home also, so why wouldn't she be. I'll leave her alone, then. :)
 
Yeah Angie, I've noticed EJ going 2-3 times a day when home and asked if he's been going often at school but he said no. I'm glad you started this, now I know he's not the only one:)
 
Claire goes anywhere, everywhere, except....in her words "stinky gas stations". :). See we can't even follow this rule of thumb over here. :)
 
Hey Angie,

Until Sarah came upon psyllium husks for her chronic diarrhoea she spent a good four years planning her eating around her day so she wouldn't have to use the toilet when she was out. I notice when she is home for the day she doesn't take the psyllium and just lets nature take it's course.

I think home is the comfort zone for many things, it's where we feel safe, comfortable and unhindered. The place we do things we wouldn't dream of doing in other places, whether it be going to the toilet to have a session or slamming your bag down and stomping around at the end of a frustrating day. It just feels right. :)

Dusty. xxx
 
Brian even has a bathroom in our house that seems to be 'his'. He likes that one for some reason and will even come down during the night (if need be) to use that one even tho there is one right outside his bedroom.

Julie, Also, when he has to go...he never holds it- so we are right there with you- goes anywhere, anyplace when we are not at home.

Since the humira...he's down to one a day usually, sometimes 2. So if we go somewhere right after school...we'll be using a public restroom. (And the Ladies with me!! :) He's still short for his age and looks so young that no one looks at us wierdly!! No way am I letting him in those dirty men's restrooms...sorry Mark!! :))

I read this thread, taking advantage of their crohn's, because the title struck a cord with me- I've noticed that my son, who's in middle school this year, kinda takes advantage of the; "lets not 'stress' Brian out", when it comes to school assignments and deadlines. Its hard to push him because he then does get stessed out...but we can't let him slide at school either. I know stress is a known problem with crohn's. Izzi is very young, but have you noticed her taking advantage in other areas too? Or anyone else here?
 
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I haven't found my son takes advantage (other than claiming he CAN'T eat veggies because of his crohns :ywow: - he's never liked them!) but what I have been wondering about lately is if we are beginning to make exceptions for him, ie being a little more flexible with rules or chores, giving him a bit more spending money, not really pushing to get a job, etc. because we feel sorry that he has to deal with Crohns. :redface: Its all good and fine right now but I can't help thinking we're not doing him any favours long term...

How does everyone else deal with this? I can imagine with younger children :wub: (my son's 17), the temptation to spoil them would be even greater! Its not easy finding that balance between acknowledging that they were given an unfair deal and helping them regain some advantage but not at the expense of teaching them the necessary life lessons??
 
She gets NO slack for poor behavior. She's probably had a super stressful time the last 2 years...a new baby brother, her dad and I separated, we moved, and she started school.
Life happens, and sometimes life sucks, but I think teaching our children to be kind and respectful regardless of how they feel is an important skill that will be resourceful as an adult also.
She's had an attitude problem lately that I think is partially age related and partially sleep deprivation due to starting school...still not acceptable.
She IS, however, in therapy. We started her to be sure she was adjusting well to the separation and the Crohn's, but I think we will keep her in it so that she has an outlet if she ever needs it.
I *do* stress about all of the toys/attention she gets...Monday she brought home 4 new toys, markers/coloring supplies, stickers, and a new hat. I am *so* appreciative for the wonderful staff...but some days I think it is overboard. (This is more than she would normally get but she was stuck in her room for her infusion Monday due to a fever).
 
Tesscorm said:
I haven't found my son takes advantage (other than claiming he CAN'T eat veggies because of his crohns :ywow: - he's never liked them!) but what I have been wondering about lately is if we are beginning to make exceptions for him, ie being a little more flexible with rules or chores, giving him a bit more spending money, not really pushing to get a job, etc. because we feel sorry that he has to deal with Crohns. :redface: Its all good and fine right now but I can't help thinking we're not doing him any favours long term...

How does everyone else deal with this? I can imagine with younger children :wub: (my son's 17), the temptation to spoil them would be even greater! Its not easy finding that balance between acknowledging that they were given an unfair deal and helping them regain some advantage but not at the expense of teaching them the necessary life lessons??
Click to expand...

As you know, my children didn't develop Crohn's at a younger age but I know I have made exceptions and accommodations for them and I wouldn't change a thing.

They certainly aren't exceptions to the way they behave or conduct themselves at home or outside the home but they are to things you are talking about Tess...chores, jobs, money etc.

Matt is new to this but I have made exceptions for him a very long time, probably since he was about 8, for reasons other than his health, so nothing has changed now that he has Crohn's. If anything it is me telling him to back off a bit and slow down.

Sarah has had Crohn's since she was 14 and the leeway I have given her hasn't caused her to take advantage of her disease, in fact it is quite the opposite. I truly do believe she is more driven and determined because of it. She still went out and found an after school job on her own. I sent her off to uni in the city with the expectation of fulling supporting her financially and I do but she has still found herself a part time job and is burning the candle at both ends pursuing politics extracurricularly.

I hear you about not wanting to put added stress into the mix and I feel the same way and I stopped stressing about the small stuff a long time ago.
I don't know, but I think it will always boil down to their personality and the values you instil into them as to how they are later in life. From my observations my excesses haven't had a detrimental effect in any way what so ever and my aim in life at this point is to support them, both financially and psychologically, to the best of my ability to achieve what they wish and go on to be functional and independent adults.

Dusty. :)
 
What great points, Dusty, for older kiddos.
PLUS maybe I should let go of some small stuff. Darn bull-headedness is a family trait.
You always have something great to add.
I need to make it to Australia just to meet you IRL someday :)
(You know, when dd can make it through a flight, I feel comfortable traveling with the tornado...I mean ds (in about 30 years) and I am independently wealthy. :))
 
I never went at school. Its a comfort thing. However I did use it to my advantage...got out of many tests i wasn't prepared for lol.
 
Ziggy,
HA HA You're Funny!! No teacher ever caught on?!! If they didn't you must've had the sweet good boy face going for ya :)

Brian's a good boy...just has always been a little laid back in school (before crohn's diagnosis too) but he still does good, just needs a push from us the past few years to stay on task. My 2 older kids are over achievers by far, and shy. Brian has always been our social funny kid with lots of friends. (Despite his slow growth...go figure!) Lately I've taken the road of staying on him in a firm but non stressful way.(most of the time!!)

Tesscorm,
In the VERY beginning when I knew nothing about this disease I made a statement, "If you get stuck, we go to Toys R Us". Then I found out about crohn's!!!!! Boy was that stupid! I'd have been bankrupt in the first 6 months!! Brian told me it wasn't necessary to get something...gotta love him :)
 
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I always used to go home from school to use the toilet at home. Luckily it was only a 2min walk from my house. Then when I temped I used to drive home from work at lunch time to use the toilet at home. I definitely agree with the safe toilet theory!
 
LOL, I don't think my son has tried using his Crohn's to get out of school work YET but, gotta admit, if push came to shove, in his shoes, I might be tempted! :whistleinnocently: I had osteoporosis when I was a child (5-7 years old) and I most definitely remember trying to use it to my advantage ('mom, it's soooo cold out, do you think it's good for my bones to walk ALL the way to school in this weather?' Maybe you should drive me?? LOL) :devil: My poor mom, being the ultimate worrier, I can imagine how much I stressed her!

I never actually commented on the original question in this thread but, with the experience of having had a serious illness as a child (with hospital stays, needles, meds, etc.), I know children most definitely realize that they do hold that sympathy card and will try to use it. Not in any way saying it's wrong, as parents, to give in sometimes, (our kids are dealing with more than the average kid! :heart:) but I suppose we have to find that balance. Having both perspectives of having been a sick child and now having a sick child, I think the child does deserve some exceptions and spoiling. But, as was said above, I agree that I/we just have to stay firm on the 'big' stuff and let the 'little' stuff go...

Dusty, (always appreciate your comments as another 'teen' mom) its nice to have that reassurance that other parents also make exceptions and accommodations. You got me thinking that perhaps because you made those exceptions, you removed some of Sarah's stresses which then allowed her to focus on her own 'bigger' issues in order to succeed! Hoping I can find that balance! :biggrin:
 
I have to say I have been one of those overprotective indulgent Moms. I am so worried about stressing Caitlyn out. I try so hard not to put any pressure on her. I also spoil her with treats and stuff when she asks or if she doesn't ask as well. I feel so bad making her go to school if she tells me she is not feeling up to it that I give in to her pretty easily.
 
Have you ever had a busy week, end up rushing some lunches/dinners...not eat as you should and pay for it when it all catches up to you with bad abdominal cramps right before dinner. You don't want to add a meal on top of how you're feeling? I have- and those times make me totally feel for Brian because I only have to deal with that maybe once or twice a year at most. I remember LOTS of times before he was in remission that he wouldn't be feeling good and didn't want to eat. He needed to gain weight so he'd eat anyways. His last flare lasted a year...I can't even begin to imagine how that would be, I'd be the biggest grouch! These kids of ours are not...they try to not be bad and keep their grumbling at a minimum. And I can see why they'd want to use their own bathroom. I think these kids that have already endured soooo much and are already ahead of the pack of children their ages. They have compassion beyond belief and appreciate the moments they are feeling good. They easily accept things other kids don't even have to spend one minute contemplating. IE: Foods they love but can't have, meds they have to take, pain they have to endure...fear that 'feeling good' will come to an end...etc. And they appreciate all the love and understanding they get at home. I think a good balance is what we strive for...that's why this forum is good that we have each other to bounce things off of.
 
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I am writing from the perspective of being a mom of an 18 yr old who was very ill for three years when he was much younger with nodular lymphoid hyperplasia ( an auto-immune inflammation in the bowel), but who is now very healthy.

I would sometimes get concerned that my son was being 'lazy' and 'unsociable' when he would lay around doing nothing. His dad and I would be nagging at him to do something, and friends and family would have all kinds of unhelpful advice for him and us about how he should live. It took me a long time to understand that he was having pain and feeling very fatigued, and not complaining about it when he was behaving like this. Soon after, I learned to leave him alone, to let him trust his signals from his own body as to what he needed, and to support his decisions.

Now that I have experienced my own bowel disease, I know what it is like to want to be left alone without explaining myself when I am experiencing pain and fatigue. And, I realize the magnitude of the difficulties that my son has overcome in becoming well, successful and happy. He is a role model for me. I am sorry now that I ever suspected that he was 'taking advantage' of his illness. For him, the only advantage is what he has made from it--his strength of character and his drive for success.
 
I have been thinking about why we *indulge* our kids and I guess we look at it from the perspective that I dare say we all grew up with...the spoilt child. But are our kids spoilt in that sense? I don't think they are because one very important factor has been removed from that equation, their health.

They say the simple things in life are free and they are but that also means many of the simple pleasures are taken away from our children...eating a favourite meal, going out with friends, going to the park, going camping, playing sport and on it goes. Often these things involve money as well but aren't seen as indulgences by the wider community. Because our children very often are denied these things when they are unwell, or well for that matter, as parents we turn elsewhere. We want our children derive some pleasure in life because lord knows they certainly have more than their fair share of pain and suffering and of course more often than not that pleasure means a monetary outlay but in the sense of a *gift*. We don't see playing sport as a gift to our children, or going to the park and then perhaps having an ice cream, or sending them off with their friends to the movies, they all involve money but I bet if you asked most parents they would say that isn't spoiling their child.

So what do we do? We provide them with things in their lives that give them the pleasure that is otherwise denied them and I that is how I have always thought of it. Perhaps I am making excuses for my own behaviour...:lol:...well so be it. But when the other children are out playing sport and enjoying the good times why shouldn't my child have an Ipod so they can listen to music on the 3 hour drive to the doctors. When we reach our destination in a beautiful coastal town and the other children are down on the beach why shouldn't my child have the latest Harry Potter book to read while sitting in the apartment waiting for the prep to work. When the other children are at the pictures and then going to have a meal afterwards why shouldn't my child have an Ipad to pass the time away.

I think as parents it is normal to want your child to have fun and I don't see what we do or buy for them as indulgent. Let's face it, if they didn't have IBD we would be spending our money on something else. It's society that makes us feel the way we do but let society walk a mile on our shoes and that of our children. Our children's disease is a constant in their and our lives, we don't have the comfort of knowing that if we just get through 5 years they will tell us it is cured. I work with a lady whose son (8) is profoundly deaf following meningitis as a baby, he has cochlear implants and we were talking about his deficits and how it affects him now and how it will affect him in the future. She said to me, my son had an acute illness and he has been left deaf but that is it, he is well now and like any other child, I don't know how you cope knowing that your children could get sick again at any time and having to take medication every single day of their lives.

That's the difference and that's why we do what we do.

Dusty. :heart:
 
:applause:
Wow. Well put, Dusty. You just made me want to go buy my kid something ;)
Fantastic point, though...I wonder how many hours dd has spent in the last year taking meds and supplements, or in the bathroom, or traveling to/at the docs office/in the hospital. I know it feels like I'm preparing her meds every time I turn around. I think especially as they get older it matters more...obviously my 4 year old doesn't have the social expectations of a teenager. Oh dear. I just realized that it's only going to get harder as she gets older. :( Poor kids. Off to research iPads lol!
 
That's funny about the Ipads. We promised Caitlyn if she follows through with the EN properly we will buy her an Ipad. If we can afford one (hopefully)
 
:lol:, yeah, Ipads are popular here!

Your promise got me thinking kimmidwife...I think our kids often miss out on those awards that reward a job well done. You know, that special trophy at the end of a sporting season that will never be theirs...they couldn't play that year because they were in hospital or that special award at the end of the school year...it was impossible for them to go a whole year without an absence.

Our kids do a great job with so many things, they inspire and amaze us, they endure procedures that make many an adult wince, they take their meds day in and day out, they suffer pain and indignity and above all they rarely complain. If we don't recognise and acknowledge all that who will?

Dusty. xxx
 
DustyKat said:
:lol:, yeah, Ipads are popular here!

Your promise got me thinking kimmidwife...I think our kids often miss out on those awards that reward a job well done. You know, that special trophy at the end of a sporting season that will never be theirs...they couldn't play that year because they were in hospital or that special award at the end of the school year...it was impossible for them to go a whole year without an absence.

Our kids do a great job with so many things, they inspire and amaze us, they endure procedures that make many an adult wince, they take their meds day in and day out, they suffer pain and indignity and above all they rarely complain. If we don't recognise and acknowledge all that who will?

Dusty. xxx
Click to expand...

We have a section 504 plan here as Crohn's is considered a disability...if they only miss days due to their disease they are eligible for perfect attendance. I wonder if you have anything similar? ETA...just realized your kiddos are too old...duh...sorry!
That being said I agree that rewards for positive things are wonderful...and I guess sitting though a 5 hour infusion with minimal fussing deserves recognition also :)
 
Dusty, You always say it soooo perfectly!! :)

Talking about how our kiddos live differently: We have a 504 in place too...it made me think...unfortunatley since Brian missed so much school last year, his teacher felt it was necessary to explain to his class what was going on. (And he did need to; his friends were upset he was gone and without any reason, parents were starting to call me worried), but think about it...My child has always been so private, and his flare caused it to be public. Its all ok now, but I wonder sometimes how parents, who don't know what this disease is, will react in the future. (Like do they know its not contagious, or if they know it is hereditary will they not want their daughters to date him when he's older? Silly worries I know) Hopefully he'll stay in remission and they'll all forget!
 
As a Crohn's pt. who was diagnosed at age 12, I got through 6th - 8th grade on prednisone with a hospitalization or 2 in 8th grade and did ok in school. High school was tough because by 11th grade the illness got worse and I did my best to stay on top of everything.

On my good days, I went to school and on the days I missed, I concentrated on getting well. I never abused my illness for fear of not being able to graduate with my class. My teachers were very understanding and gave me enough time to make up the work. Senior year I needed ileostomy surgery to save my life so I missed half the year. When I came back to school, it was time for exams but the principal was worried I'd relapse so she told me that they'd pass me on what I had already done and count what work I was doing as extra credit. As for taking the exams, I was told to stay home and just show up for graduation practice. Turns out that from all of my hard work and determination beforehand, I had a very high B+ average & enough credits to graduate with my class PLUS I got the "I Dare You Award" that I didn't even know about. The reason I got it was because I had determination and courage in facing adversity & didn't let it get to me.

In college, I got an Associate Degree but had to take a semester off due to surgery. I worked very hard and made the Dean's List.

Over the years when I started to counsel teens with CD, a few of them would drop out of high school and start to smoke/drink & just give up letting the illness get the best of them. Their parents would attend the local CCFA support chapter meetings but not enforce their child to stay in school or even stay on their medications and then they'd wonder why their kid was still very ill. I'd tell them that they'd get into remission if they'd listen to their doctor and stay on their treatments. They could achieve anything if they put their minds to it. It CAN BE DONE! If I could do it, so could they. Children need boundaries. I had boundaries when I was diagnosed. I was taught to listen to my doctors, respect them, respect my teachers unless there's a problem then I'd go to my folks for help. I had to grow up at a very early age. Crohn's taught me patience, tolerance, when to question authority, and empathy.

Oh yeah, and if there's something on my plate that I see that looks like it may cause a blockage, I avoid it. If I can't chew it, then I don't eat it or swallow it.

:D:D:D ~GW
 
I find myself being really lenient with my 9 year old too! I feel bad for all he has to go through for treatment of his Crohn's. Seems natural to spoil kids when they are sick with something simple like a cold anyway, and a chronic illness falls along that line. But clearly only to some limit, if he stopped behaving, like skipping school or treatment, he wouldn't get so many privileges. It's a good thought to be aware that they might use it as an excuse too much.

Jennifer
 
LOL, I will never again question myself if giving my son some slack is the right thing! LOL I so totally agree that our kids got a bum deal (so to speak!) and show so much strength in dealing with so much more than the average kid. They so deserve the recognition, the rewards... and those 'somethings' to try to make up for what they should never have had to deal with!

Any deals on 'bulk' i-pad orders? LOL :thumleft:
 
I like that idea of a bulk ipad order. Maybe we really could do that. I will look into it. In the meantime has anyone been granted a wish for their child by Make A Wish or one of those other rganizations? We tried but Caitlyn's doctor did not approve us. I am going to speak with him again and see if I can get her a wish.
 
I'm not sure what you're dd has, but is IBD considered a terminal illness? I thought that MAW was for kiddos with life threatening illnesses like cancer...
 
According to their guideline it is for any kids with serious illnesses that requires continued care and medication on a long term basis and frequent hospitalizations.
 
I don't think IBD would fit the criteria of MAW. It isn't a terminal illness and when diagnosed and under the supervision of health professionals it shouldn't be life threatening.

Dusty. xxx
 
From their website:
What illnesses qualify for a child for a wish?

Conditions that generally qualify children for our services include, but are not limited to, various forms of cancer, heart disease, Cystic Fibrosis, Duchenne’s muscular dystrophy and organ transplants. Children with more chronic conditions like cerebral palsy, diabetes, developmental delays, epilepsy, Crohn’s disease or Spina Bifida may qualify if their conditions are coupled with other complications and the combination is considered life-threatening.

Does a child's condition have to be terminal to qualify for a wish?

No. Many of the children who qualify for a wish go on to lead healthy lives. We grant the wishes of medically eligible children (i.e. those diagnosed with life-threatening medical conditions - i.e., a progressive, degenerative or malignant condition that has placed the child's life in jeopardy.)

Please don't think that I am splitting hairs with you...I was curious, though.

We visited Boston Childrens this summer for a second opinion and I am thankful that dd "only" has Crohn's. It put things into perspective for me. I cried just thinking about all of the children that are sicker than her.

It sucks that our kids have to endure *anything*, I know. Her is an excerpt from a piece I wrote to raise money for our walk:

"...if I could end her pain, I would. I wish I could have the disease for her. I wish *I* was in the bathroom all day, instead of my spirited, willful, loving 4 year old that tells me "one poke" each time she needs another IV or more bloodwork. I wish *I* was the one that took 13 medications and supplements a day, instead of my sweet, innocent girl. She is incredible and amazing, and if I could find a way to make her disease easier for her to manage, I would."
 

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