What is your IBDer allowed to do

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izzi'smom

izzi'smom

Joined
May 23, 2011
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that you never thought you'd allow?!

Was having a private laugh this afternoon as I bought her a milkshake because she wouldn't eat her lunch. I buy her anything and everything she'd like to eat these days...in desperation!!

I also have a no-ask bathroom policy...obviously no matter what is going on she may use the restroom without asking...always.
 
Oh now THIS is a fun thread...

Make demands for food and get them met asap. Even if I have to get dressed at 8:30 pm and go out to the store like the husband of a pregnant woman. :tongue:
My adult children who were raised on a schedule, three meals a day and one snack, and you ate what you were given and it was all "healthy", are mad at me for this. :voodoo:

Next?
 
Oh man, where do I start! :lol:

I don't sweat the small stuff anymore so it is all pretty much open slather! :eek2: You name it and there is every likelihood I would say yes with gusto!!! :ylol:

Dusty...:soledance:
 
Play Xbox online with his friends for AGES.

Prior to my son getting sick I was anti video game. Once he became sick I realized that he could play online with his friends and they could talk to each other through the console. I was sold. It gave my son contact with his peers when he was not feeling up to social outings or visits. It was a huge benefit at times when he was feeling really bad.
 
Twiggy - that's just what I've ended up doing! My son ends up playing on his Playstation 3 far too often, maily because he isn't able to do much else at the moment.
I remember those self-righteous days - I'll never let my children play on the playstation for more than an hour a day :ylol:
 
Haha, when EJ was newly dxed, we bought him an I-pad and a very nice (too nice for a beginner) guitar! Thank goodness he wasn't nearing getting his driver's license!!

Me too Twiggy!! I don't sweat the hours spent on video games!
 
J-love that..."like the husband of a pregnant woman"...exactly how I feel some days! Especially since she ate organic, homemade baby food, wasn't introduced to cookies/ice cream until 2 and 3 years old, etc, etc! Now it is whatever, whenever (glad we live close to Wendy's and subway!)

I let Izz watch a TON of TV also...can't believe I *haven't* gotten her an iPad yet (although maybe it is because *I* don't have one yet lol)... maybe that's a good post-op prize to help keep her occupied!

Mark-so true!! No shiny new cars here for her...yet loL!

Good thing they don't sell diamond studded ostomy bags...we'd have one if she wanted it! ;)
 
Oh my gosh, you guys all put me to shame :( I'm feeling like I haven't done nearly enough for Stephen! :lol: No new ipad, no new xbox and no new car! I'd better get going on this stuff for my baby :Karl:

Although I do make LOTS of exceptions when it comes to everyday stresses - forgets things at home (drive back to get them), forgets tutoring (pay for no show!), forgets lunch at home, etc., etc.,... is this just a 'guy' thing???? :lol: (sorry Dexky, Don, other dads :blush:) Also, I pretty much let him 'skip' class when he wants... he gets good marks so, if he wants to sleep in one day, I don't worry about him missing a class here and there.
 
OOOH, I forgot TV...She's watched entire seasons of Project Runway in like two days :eek:
The adult kids are mad at this too. They were sent outside after school, told to come home at dusk, (we lived in a gated community), had dinner, did homework and THEN had ONE hour of TV before bed. :lol2:

And right after DX, still hovering near death's door, carryig formula around in a backpack, we went to the pet store at her request and got two parakeets and a cage meant for a macaw, 5x4 feet.
We still have them and she says the noise they make is annoying :yfaint:

Tess, Stephen is old enough for the car of his choosing :yfaint:
 
Let me preface this by saying, my son has just been recently diagnosed, we still don't have his CD under control, and he's currently doing EN.

Sooooo, at this point pretty much the sky is the limit. Can I have a friend over? Absolutely, invite 2 or 3. Can we rent a video? Yep, let me grab my keys. Can we go to the library? Yep Can I stay up an extra 5 minutes? Sure make it 10. Can I download a new app on my ipad? Sure He recently got an Xbox which we promised him if he would do the EN and now has 4 games to go with it. If he asked for a car I might be willing to get that too and let it sit for 5 years until he gets his license :ylol:.

I think as parents we feel so bad for our kids and what they are having to deal with at such a young age. You look for opportunites to encourage happiness in their lives.
 
My husband always keeps the downstairs bedroom bathroom open for me. He normally lets me know if he is going to use it. He lets me watch TV when I am exhausted and when I go to bed before him, he comes down and talks with me and tucks me in. (I sleep at least 10 hours a night)

@Twiggy, I think it is great that you realized that your son can have fun and talk to friends while being at home. It is important that he stays in contact with the "outside" world!

Kit
 
Shelley...laughing aloud for real...yep that's how it rolls here too...thank God V doesn't abuse my lapdog parenting style, she is too good. If it were my oldest or youngest...forget it. :eek:

The latest, from this week: Two outings two days in a row to the same expensive go cart place...(sound of me unzipping wallet) Heck yeah, and here's way more money for food than you need...

Kit, what a sweet fella :thumleft:
 
Julie, S doesn't abuse it either. He's never been one to ask for much. Heck, if he goes too long without wanting something I'll actually offer something up :)

I'm so glad V is feeling better! Let the good times roll!
 
:lol: One of the things I remember when I was in the hospital as a child was that my mom brought me a gift EVERY SINGLE DAY! (At the time, parents didn't stay at the hospital, just 'visited' :eek:). Luckily, there were no ipads, etc. back then... just colouring books, crayons and puzzles!

Guess some things never change :Karl:
 
Oh God, Shelley, I hope what I said re: abusing didn't "read" like I meant S was :eek: God, no...I was thinking of two of my four who would if given the chance, and many of their pals who I know would.

I know what you mean, V isn't a demanding sort either, makes it all the more poignant :smile:
 
Julie, I didn't take it that way AT ALL! No worries! I think when you have kids who don't expect things or ask for a lot (like V and S), it makes it even easier to indulge them. The other day I was even asking him if he wanted a kitty or some other kind of animal. My husband was making the cut throat sign at me from across the room. LOL Even S has better sense than me some days. He says, "Mom, I think we have our hands full with the 3 dogs we have." I need to get myself in check though else I'll have a monster in the making!

And let me clarify the 3 dog situation so no one thinks I'm a hoarder! I had 2 shih tzus when I found out about a dog tied to a tree with no food or water. This poor dog was skin and bones and had no shelter. I "rescued" the dog with the intention of getting her healthy and then finding her a good home. Even pinky sweared with my husband on it :). Well, after months of heart worm treatment and lots of food and love we all fell in love with her. So now I have a 2 shih tzus and a 90lb yellow lab!
 
Shelley - re the dogs, don't blame you at all :) We would have done the same! How could you let her go after nursing her back to health! :)
 
I basically let her do what she wants, eat what she wants when she wants and wait on her hand and foot. she gets away with far more than her sister. I think I am just so happy to see her eating and drinking that I dont care what it is! She watches far to much telly aswell.
 
ditto here. Alex pretty much gets away with murder in our house, gets whatever he wants, whenever. He was spoiled before, being the baby, but it is kind of over the top with the video games and legos. I have a lot more patience and tolerance for his moods too. That said, he is still a good student and well-behaved and deserves it with all he has to put up with. Poor kids! :)
 
Great thread izzi'smom,

Guilty of all of the above...food, tv, gifts, xbox live...haven't bought a dog yet but have given it real consideration in moments of desperation.

A few weeks ago I took my son for a massage, just so he could feel better for an hour. He is a great kid and has suffered so stoically through everything he's gone through.

I wish I could do more and I think I try to compensate (a little?) in monetary or spoiling ways because I can't fix this.
 
One word- Legos. Colonoscopy, Upper GI scan, Humira training were all Lego events. My house is bursting with lego sets. If he felt punky, he could build them for a bit.

Our case manager finally pulled me aside and suggested that I find a way to deal with it better. My son never asked for the gifts- I now realize it was my way of coping
 
I think legos is an awesome way to deal with it! They build good spatial skills and give the kids something to do aside from tv and videogames all the time, when they can't do much else while feeling bad. They do pile up, but they are SO cool. Broken down, they actually store pretty easily. Forget your case manager, your son shouldn't have to ask for them, do they make him happy?!? LOL. There are way worse ways for us to cope too anyway. ;)
 
My son is not diagnosed but I have bought a lego set after every major test. After the bad colonoscopy we got extra. I bribed him to drink the prep with legos (we built a ninjago vehicle as he finished the prep) and in the hospital in a particularly low moment I tried to cheer him with the prospect of legos. I think legos are great! and obviously I think this is a perfectly acceptable way to go! LOL.
 
This thread is so true. I took the girls to our first Crohn's seminar and my oldest acted out and took her out and warned her to knock it off. But Chloe I know I let slide alot more. We try to stay consistent but very hard. We feel so bad for her we do let in. No diamonds but dorothy looking sparkly sneakers. I feel better start to fee guilty sometimes.
 
OMG. I can't let my son see this who knows what he will come up with. :ylol: Life is pretty good overall for my guys as far as things they get to do. I can't say H gets to do anything different or anything different than his brother other than things related to food. We try to serve things that he is more likely to want to eat, which benefits his brother too. With twins, there is constant emphasis on fairness in our house, they will point out every perceived injustice. So much so that N takes all the vitamins/supplements that H does everything except for the medicine., (except now N has his own medicine now, different story). We are also more likely now to let them stay home from school when not feeling well rather than pushing thru. Since H's symptoms have not impacted his day to day life, we feel it is best to treat him no different. As we told him at dx, you are the same great guy today as you were yesterday, nothing has changed about who you are, we just may have to adjust to some new things. Things may change (probably would change) as circumstances change...but for now we are trying to keep his life as much the same as before.
 
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I always try to balance things between my two (non-twin) boys too. But really, life isn't fair. They will wail about it, but it is what it is. :) The older one is plenty spoiled as it is anyway, so I don't feel guilty about it. He'll get things the younger won't- already took a school trip the one with Crohn's probably won't be able to manage when it's his turn, for instance.
 
Aaaaaaaah, so there is an advantage to both my children having Crohn's! I don't have to have to worry about one getting something that the other isn't and they can't accuse each other of being my favourite! Schweeeeeet! :rof:

Dusty. :)
 
Oh this is funny Angie ! :ylol:

Hmmm, let's see ... Gab basically turned me into her personal chef, chauffeur, and real life Cinderella !
Mom, I really want some breakfast burritos ~ Oh sure honey, would you like 1 or two? Two please. I make them and she sometimes would take one bite and say her stomach hurt. A few minutes later...mom, I really want a strawberry cheesecake muffin. I grab the keys and go. Another case of a bite or two and its over..MOM I want a milkshake ! Off I go again...
LOL
She would also lay in bed and I would serve her the food like a princess.
She always drinks water from a bottle and while she was really sick she would just take the bottles after they were empty and throw them across the room until there was a pile as big as a mountain, then she would finally "allow" me to clean them up and take them to the recycle bin.
LOL I could go on and on but I won't right now :hallo3:
Of course she has just about every new technological gadget that is out there that she was interested in...
Funny enough....she's pretty healthy now and when she comes home on weekends to visit...she still pulls the "Mom I want a ....." while she sits there perfectly comfortable and I JUMP ! :ylol::ylol:
 
Tracy... poor you! :rof: I can just picture the mountain of water bottles! Stephen's appetite is good now but I often still do as you describe... 'You're hungry?? What would you like? Don't worry hon, of course I don't mind making french toast at 1am!' :wub: My daughter, of course, is rolling her eyes :yrolleyes: saying 'omg, mom, he's not a baby'!... and Stephen's got that 'sibling smirk' :devil: that says 'ha ha, I won this one!'
 
T...I completely get the "make whatever she wants" and then her sstomach hurts...so frustrating but I *hate* to complain!!
 
Dusty - LOL! there's always a silver lining somewhere? :)

When we would whine as kids, my dad would always say 'cause I like [other child] better'. We knew it was never true and always shut us up.

Hardest to say no to Alex is for popcorn, he loves the stuff and it's a no-no. I let him have like 5 kernels and try to remove the crunchy inside bits. sigh.
 
Jenn try the popcorners snack. They are pretty close to the taste and texture of popcorn. They have helped out in our house
 
I let my son buy a $1 app every time he gains a pound. And I weigh him 2x's per day which I am sure is not normal even for a crohn's mom. I also bring him subway to school almost everyday. The other mom's think I am crazy and I spoil him, but I am just glad he is eating. :)
 
I dont want to sound mean or anything, but growing up I was the "sibling" in a similar situation, my brother got really sick, everyone thought it was cancer, it wasnt and after a while he recovered. During his illness my parents were over him all the time. Cooking special meals, bringing him toys having friends over, letting him skip school, watch tv etc etc. They really neglected both me and my other brother. This went on for a loooong time after he was better and finally cured. (He is 35 now, a doctor, married and father of a 3y.o. boy). It really hurt me to see the way my parents treated him (in some way they still do). My mother admited openly to us that he was her favorite a few years ago. After all these years, more than 20, it still hurt that my mother favored my brother more than me. I did a lot of things to gain their approval over the years but deep down I still feel like it was unfair from my parents to do that. I know that this was their way to cherish the moments with him, making him feel better, eat whatever, but still you dont think about that when you are 15 you only see your parents preference over the child and him manipulating them to get to do things unheard for the other two siblings.
 
Hey hun,

You don't sound mean, you are speaking from the heart of a time that hurt you very deeply...:hug:...and it never hurts for us to hear how damaging blatant favouritism can be.

Although I can't speak for the other parent's here, I know in my own case and I have a very strong feeling the other parent's here are the same as me, I have always made it my mission to do my utmost to ensure that one child is never favoured over another. Each is unique in their own special way and although the spoiling may take different forms, as suited to that child, they come out even in the end.

Dusty. xxx
 
Point well taken, scifimom! I have a two year old that doesn't yet know the difference, but at some point he will-now it sort of evens out as he needs more care than my 5 year old.
Growing up my brother had a learning disability-my mom worked with him nonstop. He was applauded for his c's while I was ignored for my a's and b's. While I understand where you are coming from, I now (in my thirties, but even in my twenties) know that my. Mom was doing what was best for my brother. I quit trying in school- got my own c's, still got ignored, and got crappy grades.
I will surely keep it in mind as they grow, though. Often I allow her brother extras that she is allowed, only because I feel that it isn't fair to him.
I appreciate you sharing you perspective...and am sorry for the pain it causes you-hugs!
 
You guys are better mommies than I for sure.
V being so close to death really messed with me. Esp since it was a wasting away, weakening by the day process over weeks.

Whenever Arden (younger sib age 12) dares to complain about ANYthing in her pretty perfect, full and happy life, I have NO sympathy and tell her, don't even, you have nothing wrong in your life and you'd better correct that attitude fast.
See, she is not a stoic sort as V is, she is the type to complain over minor issues, and that's a trait I detest in anyone and trained out of my kids as best I could. They were taught to deal, not whine, and Arden's the only one who does.

It's impossible for me to hear her complain about school projects, or other silliness, and not think of V literally dying and apologizing for not being able to finish food I'd fixed, and for unintentionally waking me at night (she would try to stay quiet as she writhed in pain and sometimes I'd hear her moan) *sob*

Is this truth or dare...:redface:
 
Scifimom, thanks for sharing and for the 'reminder'! Growing up, I was the 'sick' one who got the attention (my brother was only 3 to 6 years old). My mom and I have talked about this and I know she struggled with this (broke my mom’s heart when he once asked her if she loved me more:cry:). My mom did not have favourites, so there is no doubt that any 'neglect' my brother felt was truly due to her worries and time constraints but so hard for a young child to understand. It's a tough juggling act. :(

Like everyone else here, I love my kids equally and try to be fair to both and to give them 100% of what they need. But, as Dusty said, their needs are individual and will vary at different times. I try to teach them to realize this and to understand that I respond to their individual needs (and that they can count on this)

But, I've always believed it's really important to verbalize this and not assume that they are seeing what I see; even at 17 and 18, I don't expect that they see things from my 'parental' perspective. Since they were young, I have talked with them about this, sometimes casually or sometimes at a specific time/event, about why I'm doing something, why the other needs something (even if that 'need' is just a material thing to boost spirits), etc. Similar to Julie, I certainly won’t give in to an unnecessary ‘poor little me’ attitude but, I’ve found that the discussions can often circumvent a ‘poor little me’ attitude (if it still comes, then it’s just ‘too bad’)! I hope that by talking with them, they will appreciate that loved ones will have different needs at different times and, most important!, that neither will never feel that they are loved any differently.

Also, I think it’s important that we remember something that’s in our favour!… Scifimom’s mother, Angie’s mom and my mother did not have the support system or the resources that we now have available. Just this thread alone has made us all more aware, reminded us of our non-IBDer’s needs and provided us with so many other perspectives (I know I will give Emily an extra kiss tonight :kiss:). Our children will benefit from the advantages we now have and that many of the unintentional ‘shortcomings’ or ‘mistakes’ our own parents made, we will be able to minimize or avoid. :rosette1:
 
^^^ yeah that!!!!
consider this a thank you to EVERY parent here that has raised my awareness in one way or another...I am grateful to all of you- where would I be without such a wonderful support system!!
 
good perspective of course! It's not right. Even in families without any serious illness, there is favoritism. My brother is still babied over my sister and I, 40+ years later. life truly isn't fair! I try not to play favorites too. I do find my relationship alternates easy/hard with each of them as they grow and change and frustrate me. :)
 
Good point Jenn, I also find that my relationships with my children do go through easy/hard stages... even tho I don't believe I ever 'favour' one, no doubt the stage of our relationship has effected my own behaviour. :blush:
 
Awh a lot of this sounds familiar. My husband who used to be pretty strict, now cannot set any boundaries for our teenage daughter anymore. He either lets me take the decision (and I am only slightly worse than him) or just says yes. Phones, clothes, parties you name it.
And the one with driving her anywhere, making waffles at 1 am, of yeah been there.

I noticed a milkshake mentioned, our doctor said never ever milk again, even though she is not lactose intolerant. Opinions?:confused2:
 
From what I understand the enzymes used to digest lactose are located in the inner lining of the intestine. When it is inflamed, the enzymes are not able to work properly to break down the lactose adding to the diarrhea.
We removed all dairy twice, along with a bunch of other possible/probable IBD irritants. The first time it seemed to decrease her symptoms; the second time around it didn't help at all.
I don't withold any foods these days, really. Popcorn, seeds, nuts and fruit peels are on our do not eat list, but otherwise if she wants it/has an appetite for it, I let her have it. :)
 

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