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How I feel about Crohn's. A parent's perspective

DustyKat

DustyKat

Super Moderator
Just need to put my thoughts down, I hope no one minds.

I have such mixed emotions about my daughter. I worry and think about her every single day, not all the time, when you are busy the thoughts are pushed to the back of your mind, it's the quiet times that are the hardest.

At these times I am both angry and sad; why did this happen to my baby, why did it strike her at such a young age, it's so unfair that she has not had the opportunity to enjoy her teenage years, why does she have to suffer this burden for the rest of her life, when will she get sick again. Then there is the overwhelming despair that comes at night - what I wouldn't give for me to have this disease and not her.

And yet I am bursting with pride and awe at the incredible young woman she has become. So independent, so confident, so in control and with a wonderfully keen and earthy sense of humour. This humour always comes to the fore when I chat with her over the phone and she tells me she isn't feeling well. Try as I might, the first thing that pops into my mind is - I hope it's not Crohns. I don't say it, just think it. We will talk some more and she will laugh and say, "Oh Mum, I'm fine , I just need to eat some concrete and harden the F*** up".

Thanks for listening. It's so good to have a place where I can say these things and know that the people reading will understand.:)
 
D Bergy

D Bergy

I know how you feel. Two of my three children have autoimmune diseases, and the third one has some slight symptoms that make me think he will also be dealing with possible Crohn's later on in life.

I am responsible for the genetic predisposition, so that does not make me feel too good either.

They get along, just as I did. It is just one of those things in life that have to be dealt with, and children seem pretty good at that most of the time. That does not make us feel good about it though.

Dan
 
ameslouise

ameslouise

Moderator
Hi Dusty -

As parents, we just want our kid's life to be easy and perfect. My mom always said, "When you hurt, I hurt." Now that I am a parent, I know what she means.

As hard as this disease is on the patient, I think it's harder still on the family. There is a feeling of helplessnes I know my husband and parents have as they have watched me suffer over the years. I am sure if you could take your daughter's pain and illness for yourself you would do it in a heartbeat.

The best thing you can do is to be strong and understanding for her.

-Amy
 
HospitalPatient

HospitalPatient

May 27, 2010

DustyKat:

Greetings. I think it is wonderful that you are so thoughtful about your daughter and her health and the Challenges that lie ahead for her but, and I am sure you know this, I want to caution you about asking those very difficult “Why?” questions as I have leaned that nothing good comes out of those inquiries and it only adds to the frustration of Crohn’s Disease by letting your mind go there.

While I would have preferred a life without Crohn’s Disease, I have learned SO MUCH from being a Patient that if I could do it all over again – I don’t think I would change it. This may sound crazy but here’s why: Like your daughter, I grew up with MANY needs once I was diagnosed and I grew up FAST and most importantly – I developed Friendships that are GENUINE and LIFE-LASTING. These Friendships taught ME how to be such a Good Friend to Others so in a strange way – I’ve benefited from having Crohn’s Disease for 25 years. Having said that, it sounds like your daughter is one tough cookie and that’s because YOU must have set an excellent example for her.

I am not a parent so I can’t relate on that level but as someone who has a Mom I can tell you that my Mom marvels at the things my friends do to help me – much the same way I suspect you feel when you see the Unbreakable Bonds your Daughter has with her friends.

Hang in there.
 
karim

karim

Ohh eMum- do hope you are not feeling so down today! It absolutely breaks my heart but makes me so happy at the same time to know there are mums out there who care as much as you do. I can understand the pain you are feeling to a certain extent. Chloe, my daughter, had to have a heart operation a year ago this month when she was 3 years old and will always be considered a heart patient the rest of her life. It is so scary not knowing what will happen next or when the need may arise for another surgical intervention. The feeling of helplessness becomes so overwhelming. Do pm me and we can chat. You have already helped me so much through this rough time and I want to be able to return the favor. Thank you so much for your kind words and sweet and thoughtful messages. They truly do add light to some dark days.

You are an AMAZING woman!!

Much love and super big HUGS!!!

Kari xxxx
 
DustyKat

DustyKat

Super Moderator
D Bergy said:
I know how you feel. Two of my three children have autoimmune diseases, and the third one has some slight symptoms that make me think he will also be dealing with possible Crohn's later on in life.

I am responsible for the genetic predisposition, so that does not make me feel too good either.

They get along, just as I did. It is just one of those things in life that have to be dealt with, and children seem pretty good at that most of the time. That does not make us feel good about it though.
Dan
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Oh Dan, I can only begin to imagine what you are going through. You are right, children have an innate ability to cope with and overcome adversity. My thoughts are with you.

Amy, thanks for your thoughts. I do my utmost to be strong and understanding and I hope that I am achieving it. I think I am.

Michael, thank you for your kind words. I know what you mean about the why questions and it isn't something I dwell on but try as I might the little buggers still manage to penetrate! You have given me something to think about with Crohn's and the way it is shaping my daughters life. At the back of my mind I know it has had some positive effects but it is something I haven't given enough thought to. Thanks for that.

Kari, you say you are happy to know there are mums out there that care as much as I do. Don't sell yourself short as I am sure you are one of those mums yourself.

Again, thank you everyone.
 
crohnicaly stinky

crohnicaly stinky

DustyKat,

I'm sacred for my kids now and scared for my sister also. Anything that hurts children is so heart breaking and while I can't know exactly how you feel I can sure imagine that it hurts and that you must really be frustrated not to be able to make it go away for her.

I haven't expressed much of my religious views on here but as a Christian faith does help. They are learning things everyday and developing new treatments. Forums like this will help spread knowledge quickly.

I noticed this morning in church that the prayer focus for the month of June is Hebrews 11:1 "Now faith is being sure of what we hope for and certain of what we do not see." I have this kind of faith that in the coming years the lives of people with autoimmune diseases of all kinds are going to be better off.
 
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kello82

kello82

from the daughters perspective?
it breaks MY heart that my parents worry so much over me. no parent should EVER have to watch their kid in pain like that, i think that pain is even worse than the physical experience i feel.

but i think emotional pain worry and sadness are the inverse of love and care. the more of one you have, the more of the other.

you are a good mom =]
 
J

Jeff D.

Another from a child's perspective. I was in the ER last night and as I was writhing in pain I looked at my mother's face and I could see the pain in her eyes. I would much have the disease yet my mom not know I was in pain then to see that look again. It was a face of such agony every time I so much as grimmaced. It was as if she was bearing the pain just as much as I was and it hurt so much for me to know how much pain my pain caused her.

I pray my parents nor any parent would ever have to see their child suffer. I don't know what it's like as I'm not a parent but that look told me it was probably much worse than what I was going through.

I'm praying for all you parents of suffering children.
 
DustyKat

DustyKat

Super Moderator
Thanks crohnicaly stinky.

Kello & Jeff, well now I'm crying! but they are good tears. What wonderful, warm and caring children you are, your parents must be so proud of you. Thank you so much for your personal thoughts. (((HUGS))) to you both.
 
belle1999

belle1999

Reading what you wrote, gave me a better perspective on what my own mother must be feeling. Granted I am well past being a teenager, but I know my mom had some of those same thoughts and feelings. Thanks for sharing and big HUGS!
 
P

peakey 1553

I am a mum with crohns who is still confused and in lot's of pain,but it is nothing to what my daughter faces everyday with a 6 year old that has just been diagnosed with asperges and everyday day is a nightmare,not only for the parents but for him aswell,to me that pain is greater and more heartbreaking.
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
Dusty, thanks for starting this thread. I know exactly how you feel. I know the far too fleeting moments when the disease is not the most prevalent thing on your mind. I know the heartbreaking hours at work when EJ is having a bad day and the last thing I see is his pain when I leave. I also know the joy of seeing a ten year old getting to be a ten yr old with no ill effects. God bless you and Roo.

Mark
 
DustyKat

DustyKat

Super Moderator
Belle - thanks for the hugs and it's my privilege to be able to share my feelings with you.

peakey & Dexky - I don't know what to say. Perhaps I don't need say anything as I know, as you do, we are experiencing, living, feeling, breathing the same pain and emotion. It is comforting to have found you. Thank you.
 
Vivvian's Mommy

Vivvian's Mommy

kello82 said:
from the daughters perspective?
it breaks MY heart that my parents worry so much over me. no parent should EVER have to watch their kid in pain like that, i think that pain is even worse than the physical experience i feel.

but i think emotional pain worry and sadness are the inverse of love and care. the more of one you have, the more of the other.

you are a good mom =]
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Also from another daughter's perspective...I use to sit and listen to my mom cry at night and always question GOD.It was so hard when they first diagnose me because we never heard of it for one and for two my mom always questioned how I got it.She would blame herself and the thing is for my family all the way to my great grandparents there is no digestive problems.I always wonder what i could do to make her feel better.i think the teenage years were the toughest for her because she was a single mom with 2 children to take care of when I ended up in the hospital all the time she had a hard time being there as she worked and had to takecare of my brother.I just want you to know that if it wasn't for the strength she had/has I don't think I would have made it this far.I think I would have given up a long time ago if it wasn't for her support and caring for me.She did everything she could from learning how to change an ostomy to dialating.We never had a at home nurse like the doctors wanted.She worked so hard to help me through it all.I know one of my concerns has always been what if my child ends up with it will I be able to handle it as well as my mom did.But I was lucky to adopt and what I had to deal with thus far is the fact that our daughter had nicotine withdrawals.That was hard all its own with her twitching and purple because of no circulation.But we didn't have to stay in the hospital for days.My mom still helps out even now when my husband can't.
you couldn't be a better Mom then what you are.From the sounds of it you handle it quite well.
 
Dallies

Dallies

Dragonfly
DustyKat said:
At these times I am both angry and sad; why did this happen to my baby, why did it strike her at such a young age, it's so unfair that she has not had the opportunity to enjoy her teenage years, why does she have to suffer this burden for the rest of her life, when will she get sick again. Then there is the overwhelming despair that comes at night - what I wouldn't give for me to have this disease and not her.
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Ahhhhh Dusty I have only just read this. This is exactly what goes through my head. To all the beautiful children with IBD you are all amazing. To all the parents we are all here for each other. :hug: We are all here together.
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
Just a bump so some special people on here can see this old thread and maybe add their thoughts as well. Hopefully, we will all look upon these kids someday with the same awe that Dusty has found for Sarah!!
 
Crohn's Mom

Crohn's Mom

Moderator
Well this entire thread just touches my soul :rosette2:

As soon as I dry my weepy lil tears maybe I can share my feelings a bit....thanks for bumping Dex!
:Karl:
 
R

radchic

Oh Dusty,
I know this feeling. I am struggling with this right now. It effects every aspect of my life and is always in the back of my head. This past month have been very trying for me. I hate the quiet, to easy to think. I am trying to shake myself out of this funk, but no luck so far. I feel guilty for being so weak, but I know this is temporary and I will come out of it sooner or later. I guess we just hold on tight and go along for the ride. Thanks for sharing Dusty
 
R

Runninglady

It just seems so unfair that our precious children have to go through so much at a young age!!! How all of us would swap places in a second. Thanks Dusty. X
 
DustyKat

DustyKat

Super Moderator
Oh man you guys, I am sure reliving all this with vengeance right now. Rachel, you and I are probably in a very similar place emotionally, same diagnosis time and luc and Matt are very close in age...:hug:

I am wishing more than anything that Matt has the outcome Sarah has had BUT I find myself thinking, thinking, thinking...can I be that lucky...Ugh, this sucks!

You are not alone, :ghug:
Dusty. xxx
 
M

MomofIBD's

It's always there lurking.....I have 1 child that doesn't have either CD or IBS. (Although the Dr's want to test him because of the history of his brothers) My grandson has 2 parents with....one CD & the other UC. In fact I was shell shocked when Daniel was DX last fall....I got the news just after they brought him out from the endo & colon oscopies! It was surreal....but yet he was there to see if he had something!?! Some how I just wasn't prepared or didn't have my mind wrapped around having almost all my children having this awful disease! I just want one child that isn't effected with something! But I guess that wasn't to be! All I could do was cry in the recovery room when I got the news.....Oh how I remember the look on all nurses & dr's faces there....in the quiet of the night I still cry when I am at my weakest so no one else sees.

As parents of our children with this awful disease we mourn so much even though they are with us.....who ever said it....Yes I would trade places in a heart beat!

Special Hugs to ALL The Wonderful Parents here! :ghug:
 
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DustyKat

DustyKat

Super Moderator
A bump up for the newbies. :ghug:

(Silver’s letters included :))

A Letter To My child:

My Darling child:
Today the doctor told me you have a bowel disease.
What does this mean, you ask?
Well I am not sure if I can describe it very well, but let me try...:

It means that your body's immune system, you know, the thing that is supposed to keep you from getting sick, has a glitch in it. They are not sure how or why it has happened...they just know that it has happened.

No, Sweety, you didn't get it from chewing on the wood in your crib, or holding on to your BM too long on that last trip we made to see grama...

No, you didn't get it from kissing Susie from down the street....

You didn't get it because you didn't eat all your broccoli for supper last week...

Yes, My Love, you may have to take pills for the rest of your life, but so do lots of other people. The medicine will hopefully keep you feeling a bit better until someone out there can find a cure....

It means that I am going to nag you to take your pills on time, and every day, and I am going to nag you to eat all the food the dietitions tell you to so you can stay healthy....

It means I am going to nag you to go to bed early and rest as much as you can, because getting tired will add to the problems of this illness. I know it's not fair that you have to be in bed earlier than the other children, but sometimes life sucks....

It means I get to hug you whenever and where ever I can, because I love you and you are so very special to me....soon enough you will be leaving to be on your own, so for now let me have my hugs....

It means there may not be thing you can do that other people your age will be doing, especially as you get older....like going out drinking all night, or taking up smoking. After you leave my house, you will have to make these choices on your own, but they are bad choices for everyone... just a little bit worse you you.....

It means I get to smother you because you are my child, and I love you.

It means you may have to be careful what you eat, because it may upset your tummy.... so no more pizza every Friday night.... maybe once in awhile, but not all the time.....

It doesn't mean that you can't go to school and off to univeristy and be whatever you want to be... a fireman....a paramedic...or even a doctor. It may mean you have to adjust your schedule a bit, but you can still be whoever you want to be.

It doesn't mean that you will never have a girlfriend or boyfriend....it may mean you have to wait a bit for that special someone to come along who understands better than most.

As you grow older, things will change. Some times you will feel really good, and be able to do all the things you want to do. But sometimes you will feel really bad, and just want to lay in bed all day because you are too tired to move. That is OK...I will still love you anyway.....

Eventually you will move out on your own, and I won't be there to nag you to get to bed on time, or eat your veggies when you can, or take all the pills you need to, but I will be only a phone call away.... and I WILL be calling you....

This is something we are going to have to work out together...and we will get through this together.... because I am your mommy, and I love you.....

If I could take your pain for myself I would. No mommy want to see her child in pain. But I can't. All I can do for now is love you and support you....and let you know I will always be here for you....

I will always worry about you; that is what mommies do... let me do my worring.... I know that you will be fine on your own.... but for now, just let me hold on to you and snuggle you and hold that feeling of never letting you go for awhile.... cause I am your mommy...and I am allowed to.

I have to go to bed now. We have to get up early to go see the doctor again. Just remember that no matter what happens along this journey, I will always be here for you...even if there are times you don't want me to.... We will get through this together. Try to be patient with me, and I will try to be patient with you.... and above all else, just remember that I love you....

always,
Your Mommy
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Dear Mom and Dad;

Well, we made it! I graduated! And I just wanted to say, "Thank you". When I was diagnosed, what seems like, so many years ago, I had no idea really what to expect, so I really wasn't all that scared. But the last 10+ years have dragged us through hell and back... so I just wanted to say thanks:

Thanks, Dad, for being there in the bathroom with me when I was 12, rubbing my back and trying to comfort me as I screamed in pain cause my butt was on fire from all the fissures......

Thanks, Mom, for constantly hounding me to take all my pills so I wouldn't "get sick" even though half of them made me puke anyway... lol...

Thank you both for cancelling so many holidays so you could take me to the doctor. Thank you for travelling 8 - 10 hours to make those appointments, and setting up the back seat of the vehicle as my own little space with a bed and a portapotty so I could be as comfortable as I could be on those long drives, after work, through the night, to get to the doctor and get home again so you only had to miss two days of work instead of three......

Thanks, Mom, for getting up every night at 2am to fill my feed bag when I was on a feeding tube for 6 months. (Oh, and I am sorry you stumbled over my shoes that one night and fell down the stairs and broke your toe.... ... if it makes you feel any better, I have never forgotten, and now I am the one always complaining about shoes being left in the way and picking them up after everyone.... )

Thanks, Dad, for going to the school everyday the year I was in Grade 12 to pick up my school work cause I was in bed in pain for half the year.... I never could have graduated high school with out you.....

Thanks to both of you for letting me rebel and "do my own thing" and letting me make my own mistakes in my teens.... I really wish I would have listened to you and not started smoking, and hadn't drank so much...but I figured I was going to die anyway, so I was going to enjoy life...even if it hurt the next day.....

Thank you for being there for me through university, sending me money when I was broke and couldn't afford food cause I had spent my money on new clothes (AGAIN!!)... for letting me phone you at 5am in hysterics cause my car wouldn't start and I needed to get to the school early to finish my term paper.... I have no idea what you could have done for me 600 miles away... but thanks for not yellin' at me anyway....

I have so much more to thank you for, but I just can't remember it all right now. And now that I have met (my hubby), I have someone else to care for me, clean up after me, drag me to the doctor's when I feel like I am going to die, and rub my back when I am sitting on the toilet screaming in pain cause my butt hurts.....

I know you will always be my parents, and you will never totally "let go", but I am going to be OK now. I will have my good days, and my bad days, and my in between days. But you got me through the worst part...and now, I will be able to make it on my own.....

I love you both, so very much.

As always,
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