Weight and why does everyone's Grandmother have Crohn's

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Charleigh

Charleigh

Joined
Nov 16, 2012
Messages
588
Location
Southern USA
I am about to vent...

How do you NOT worry about weight? E was 90 pounds 8 months ago and now he is 76 :( That is over 15% of his body weight.


My other peeve is that everyone's G.Ma has Crohn's. I have had sooooo many people tell me that their G.ma or G.pa has Crohn's and it really is no big deal, they just stopped eating raw veggies or drinking coffee and they were okay.

Does anyone else hear this and find it completely frustrating?

Ok, so sorry that I vented.
You may now return to your regular programming :)
 
I have never heard the "Oh I know so and so with Crohn's and they just {....} and they're fine now" but apparently this is very common. Everybody tells me they hear this, I just never have.

In my family my second cousin once removed (or something) died of her Crohn's, so nobody tells me mine is no big deal (then again, my family is so dysfunctional that I doubt they really care either way.)

Such is life.
 
Oh yes, so many dumb people say dumb thing, I know this because I was once those dumb people.
My MIL's best friend has crohn's and my ex-SIL( THANK GOD) had crohn's. Both said it was no big deal and never talked about it. So I thought the same.


How's your kid holding up today?
 
It is scary to see them melt away. I would keep to the liquid formula until his weight has returned to within normal limits if it were me.


You may enjoy - or not enjoy - this thread I started about the dumb, stupid and insulting things people have said. I have had some amazing things said to me by perfectly smart people and I just wanted to smack them. But then I had amazingly smart people argue with me about whether my boy/girl twins could be identical or not...

http://www.crohnsforum.com/showthread.php?t=39364

I pass on to you three gifts: inner strength and hope for the sorrow you now bear; metal for a hard shell to repel hurtful advice and judgments of all kinds; and patience for the simpletons you will encounter along the way ...

Please understand that you are not required to be excessively polite or explain yourself or educate anyone about anything. You are in fact allowed to call people on their intrusive, inappropriate and uneducated advice, questions or judgments if you care to do so. Otherwise a raised eyebrow and a Mmm or thank you for your concern followed by your back is sufficient.

Just my humble opinion.
 
Wow! You have been here how long and you managed to find my sore spot!

First, who says they don't worry about weight and who told you not to? I obsessed over weight until O started sailing a long. Heck I know perfectly healthy people who constantly worry abouot weight! If someone in the know is telling you that then they must mean lets watch all symptoms and bloods etc and if everything is going in the right direction the weight will come. I have to say that while O was making great strides weight followed by energy were the last things to show improvement.

Now my sore spot. Yes, I have had numerous people say their uncle has Crohns and you just have to control it with diet. I don't know why it is Uncles here. Anyway, I used to try to educate them but gave up and for the number of people who fluff off Crohns I now get an equal amount who have family members, co workers etc who truly suffered with the disease and they are truly sorry for O's dx.
 
It's such a massive change for me that anybody even knows what Crohn's even IS. When I was diagnosed in the 80s, nobody knew what I was talking about. It's only in the last 10 years or so that that's changed.
 
Well this is the place to rant. That is one of the frustrating things about this is people seem to think - oh so you just go to the bathroom more often and can't eat nuts, seeds and veggies, no problem. It makes me want to scream sometimes :voodoo:
Even though Jack is feeling great I still worry about his weight. I think I drive him nuts! "What do you weigh?" What did you eat today? Are you hungry? You need to eat more?
 
Jmrogers4 said:
Well this is the place to rant. That is one of the frustrating things about this is people seem to think - oh so you just go to the bathroom more often and can't eat nuts, seeds and veggies, no problem. It makes me want to scream sometimes :voodoo:
Even though Jack is feeling great I still worry about his weight. I think I drive him nuts! "What do you weigh?" What did you eat today? Are you hungry? You need to eat more?
Click to expand...


I am driving my son nuts, so your reply made me smile. I am always asking him about his poop. I told him that I am going to be "all up in his poop" until this gets better.
 
Yep I too get the grandma/grandpa has/had Crohn's. I've even had someone tell me that they know what I'm going through because their cat has IBD!!! They were serious!!! I also get frustrated by the people who think it just means we have to watch what my son eats, hmmm... Or people who think that he just has to take a pill and all will be fine, except that pill is a known carcinogen!!!
 
A friend of mine is forever telling me it has to be something shes eating that's feeding the bug.....:ybatty:....i've given up trying to explain what crohns is.
 
Last edited:
upsetmom said:
A friend of mine is forever telling me it's has to be something shes eating that's feeding the bug.....:ybatty:....i've given up trying to explain what crohns is.
Click to expand...


Give you friend a bite of you food and say...this is the exact same thing I feed my kid.....how do you feel?:rof:
 
About the grandmother thing. I think a lot of people in older times were told they had "colitis" which they think is the same as crohns when the colitis they were talking about was a gastritis or something similar. THis happened to several people I know.
Secondly weight loss is concerning! especially that amount. PUsh your doctor on this ask him about supplements either prescription or over the counter. Soemtimes I want to throttle these doctors!
 
Have to say I've never had the granny/grandpa thing - I tend to get that blank stare and the "is that a bad thing?" ;).
 
I've yet to hear anyone who has a child with Crohn's NOT worry if their child is losing weight. Loss of weight in a non-Crohnie would be of a concern to me. I weigh my son every single night! Yes, my name is Shelley and I tend to be a little on the OCD side, especially when it comes to my kid :).

A lot of people I talk to have heard of Crohn's but don't really know what it is. When I give them the cliff notes version I frequently hear, "You know, my aunt, grandma, etc. had bowel problems. My Aunt Susie could never eat corn else it would send her straight to the bathroom." At that point, I usually just listen and nod. In general, I think people mean well but really don't know what to say. Thank goodness we have this forum where there are people who truly understand what we are all going through.

Hope your guy is feeling better soon!
 
We get a lot of info on "bowel issues" others have....
" is it like the flu??"
Weight loss well our "old" ped told us he was just a skinny kid.
Don't worry. We did three boost kids a day prior to dx . He would then gain a pound a week.
Drop to two a day an lose weight. Eventually even those didn't help.
I recommend peptamen junior it is lactose free and the most drinkable ( no tube needed) semi elemental formula . There is also peptide from Abbott .
Our insurance covers ours . DS went from the 23% for weight back up to the 75%
Which is where he was from birth to age 4/5.
His height is aslo slowly coming up now that he weighs more.
 
Charleigh said:
I am about to vent...

How do you NOT worry about weight? E was 90 pounds 8 months ago and now he is 76 :( That is over 15% of his body weight.


My other peeve is that everyone's G.Ma has Crohn's. I have had sooooo many people tell me that their G.ma or G.pa has Crohn's and it really is no big deal, they just stopped eating raw veggies or drinking coffee and they were okay.

Does anyone else hear this and find it completely frustrating?

Ok, so sorry that I vented.
You may now return to your regular programming :)
Click to expand...

Oh boy! I wish I had the answer to the weight worry! :eek2: My kids are older so past the age of me asking what their weight is without getting the death stare or that grunty sound that means...I dunno know. :lol: Instead i spend my life looking at them sideways, or using that look you develop to look at your kids without really looking at them :shifty-t: (<yeah, that one), to see how their clothes sit on them!
I reckon, well in my case anyway, is the worry I have stems from the fact that the way I gauge how my children are travelling is their growth and weight. It wouldn't matter whether they were Crohnie's or not. In many ways it goes to the root of who I am. Without getting into gender stereotypes :lol: I am a Mother and a nurturer and I have a need to see my children growing and maintaining a healthy weight. I don't look on it as a failure on my part if that doesn't happen but it does make me fret about it. I don't think I have any greater pleasure in life than seeing my kids chowing down! :)

As to the Crohnie old folk, oh yeah...one minute you have never heard of Crohn's and the next minute every man and his dog has it! As to what you do or say? Patricia summed it up beautifully. :ybiggrin:

Dusty. xxx
 
I get this too (even though Danny is officially undiagnosed, the original Crohn's dx is still used on school forms, etc.). Some people know somebody that does really well with Crohn's, but many others seem to know somebody with Crohn's and gets the gravity of it. Even when people say stupid things (doctors included)... I always try to tell myself that they mean well. I find it helps me to think that.
 
I love it when people say "Just plan to be near a restroom when she has to go. You know, like after meals".

Grrr.

People don't understand. And as we all know here, each case is remarkably different.
 
Worryingly when I mentioned IBD to my MIL who even more worryingly is a practice nurse at a GP surgery she said 'Oh is that different to IBS then?' - scary - very very scary!
 
Apparently, the PE coach at my son's school has a son with CD. So when C was diagnosed some staff were always comparing them. "Hmmm...if he doesny have D all the time then are you sure it is cd because J had severe D and he had cd." Or "He should be feeling better by now because J felt better after he was dx'ed and meds were px'ed and he never had fevers." Ughh.. drove me a little bonkers!
 
I worry about my youngest son's weight (he's undiagnosed) and he's on the "chunky" side ~ so whereas a few pounds lost wouldn't be harmful, when it's unwarranted I worry like a mad woman! :ack:

Oh and don't even get me started on the unbelievable things that people say! When they are truly interested in "what Crohn's is" then I tend to be much more patient with trying to explain. When they're just seemingly ignorant and already think they know the answer, before they ask...Well, lets just say my response depends on what mood I am in ! LOL

Vent away ~ Its so healthy now and then!:rof:
 
Yes, I worry about weight all the time...not just losing, but staying the same during the "growing years" too. I would be concerned. I am always asking about weight/poop...it never ends. Ryan is always asking how we can talk about stuff while we're eating or whatever. Honestly, I have totally forgotten about manners when it comes to talking about it. It never crosses my mind somebody might want table conversation! :ylol2:

As for the comments..oh dear. Yes, I've heard it all. Should he have that sugar? :eek: (What?) I know someone who used to have it, but she did "blah" and now she's cured. :eek2: (Really?) There's no cure for Crohn's. It's just a tummy problem... :yfaint: (Huh?) Shut up! What they don't know might get them a rolling pin on the head one day :highfive:
 
jmckinley said:
Yes, I worry about weight all the time...not just losing, but staying the same during the "growing years" too. I would be concerned. I am always asking about weight/poop...it never ends. Ryan is always asking how we can talk about stuff while we're eating or whatever. Honestly, I have totally forgotten about manners when it comes to talking about it. It never crosses my mind somebody might want table conversation! :ylol2::
Click to expand...

:ylol2: Jack just had a friend stay the night over the weekend and per normal dinner conversation at our house.... He was you guys have the grossest conversations, good thing they have been friends for a long time and he has come to know what to expect at our house
 
I used to be one of those people that said "Oh, my dad has Crohn's and he's fine." Now that I've had a taste of it I feel so bad that I ever said anything like that. I think it's because when people's relatives have a disease (if it isn't their child or spouse) they tend to not know the severity. I have a bunch of people between my dad, aunts, cousin, grandmother that all have Crohn's but I didn't hear any of them complain so I didn't really get it. My dad has been sick my whole life but I still saw him going snowboarding, mountain biking, hunting etc so I thought it couldn't be bad, but I was wrong.
 

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