# How are the parents of kids with IBD coping?



## Marni's mom (Feb 11, 2013)

Without taking away from what our children are enduring physically, I'd like to open up a discussion about how we, as parents, cope with having kids with IBD.    As for any parent with any child who has a chronic illness, the stress and exhaustion from sleepless nights can really wear on us.  I know it's wearing me down.  

I'm so happy I found this website and forum because it helps to share my experiences and questions with others who know what I'm dealing with.  But I haven't seen anyone talking about the toll it's taking on them as the parent.  

How are you all holding up?

Please share.


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## CarolinAlaska (Feb 11, 2013)

I think I have become OCD.  I have a hard time doing other things that I used to be able to do and enjoy, such as Bible study.  I can't concentrate on it.  I fall asleep when I try.  I wake up in the morning often very early with some questions about Jae that I can't put aside and I have to get on the computer to look it up.  I find that I have to consciously choose to do stuff with my other kids and take interest in what they are doing, because I am so distracted and freaked out that my Jae has this thing and I worry about her all the time - Do we have the right diagnosis?  Is the treatment going to work?  Is she going to get better?  Is she going to need meds?  Would it be better if I had just ignored it all because she's lived with this for so many years now and never had all the really bad things happen yet?  Is she going to gain weight?  Is she going to grow taller?  I am distracted at work too and am finding it really hard to remember things that I should be remembering.  I don't like being like this, but it is where I am at now... :ack:


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## Niks (Feb 11, 2013)

I really don't know how you guys with little ones cope!

I find it really stressful with a 19 year old and have had to miss a lot of work recently.  Sleeping is hard and constantly trying to research what the problem/solution could be!

This place is a saving grace and answers so many questions, even if it is just eliminating things from the endless list of worries.

:applause::applause::applause::applause:


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## Ams-Qld (Feb 11, 2013)

I find I go up and down, depending on how he's going at the time. Certainly un-diagnosed and then newly diagnosed were the worst and now every time something new is added to the list! At the moment he is going for an MRI on Wednesday and then surgery for perianal abscess and fistulae. I have been really upset about this and going through a stressful time in the rest of my life as well. My hubby is great though and our five children are all troopers and very helpful around the house; but certainly God is keeping me through this, otherwise I don't know how I would go.
I know like you all I would gladly take this disease from my son in a second if I could and it can be heartbreaking. When he is in pain or unable to sleep is the hardest for me; also when thinking about the next step in meds and making decisions that are so difficult to make for someone else. I am certainly a quieter and more reflective person than I was, but also more understanding and less critical (I hope). What I know is that this is hard stuff; and you guys on the forum have been a great source of info and support. Thanks and may God bless you and yours, Ams :ybiggrin:


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## QueenGothel (Feb 11, 2013)

I have been an mess this last 3 months but surprisingly more since I have been home again.  The many hospitalizations and the coming home and adjustment period have been painful. I am very absent minded and just been on auto pilot. Not sleeping much at all. I do what I have to and don't really have any drive to do anything more. My depression has been a thicker fog than usual. I fear I am always missing something or not paying enough attention to my youngest whom has been being taken care of by others. She doesn't respond to me and I am having issues with that, I don't discipline at all or get very short wicked.  My sister thinks I need medication. I think I need time out of survival mode. DH is ready to send Row back to school, whereas I am not ready for that.  Trust issues. Mentally I am drained and exhausted. Everybody keeps telling me God doesn't give us anything we cannot handle, and what a great mom I am and I have lost faith along the way and don't feel like a mom at all... a caregiver and advocate yes but a mom no I don't feel like I am nurturing or teaching my kids anything at this point. I wish spring would just arrive, or that I can find a simple fix.  After being told I needed more sleep many times... finally yesterday I took a sleeping pill during the day trying to catch up on sleep, while DH took the kids to my MIL house.  I slept 5 hours then I was up all night, and when I did sleep it was nightmares that woke me up.  Won't be doing that again.


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## Crohn's Mom (Feb 11, 2013)

I work, and I come on here in between researching like crazy.
When she is "sick" I go into "survival" mode and I feel like a train wreck.  It's so hard to try and keep my emotions in check, and not over think every little sign and symptom she has.  
Then again, sometimes I feel like a desensitized robot because we have been going at trying to get her into remission for 3 1/2 years now and I may just be on permanent auto pilot.
It's such a roller coaster ride, but coming on here and reading others stories, good and bad, really does ease my anxiety a bit.


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## Sascot (Feb 11, 2013)

Love this forum!  Certainly helps with everything so much as I am very concerned about moaning to the other mom's at the school too much and am scared to say too much to my friends since my best friend dumped me a week after the Crohn's diagnosis for "constantly bringing her down!" :ywow:
Luckily I don't mind hospitals, etc unless they are actually causing my child pain - blood tests were horrible until Andrew got used to them and we know where his "good vein" is :ybiggrin:.  Every now and then I go through the denial when he is doing well with the really unrealistic hope niggling that this is all a mistake and he will be fine.  I am happy when he is happy.


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## Niks (Feb 11, 2013)

Sascot said:


> I am very concerned about moaning to the other mom's at the school too much and am scared to say too much to my friends since my best friend dumped me a week after the Crohn's diagnosis for "constantly bringing her down!" :ywow:
> QUOTE]
> 
> OMG!!  Your best friend dumped you, because you were bringing HER down!!!
> ...


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## Tesscorm (Feb 11, 2013)

I have to agree that this forum is what lets me cope.  The knowledge I've gained has alleviated the loss of control and the overwhelming feeling of not knowing what's happening and the accompanying worries; reading others' stories makes me realize that we're not alone, not Stephen nor me; and the support and friendship is probably what's kept me afloat when the worries or frustrations are teetering on 'overwhelming'!

I do think I've changed since Stephen's diagnosis...  as Dusty has often said, it's usually the first thing I think of in the morning and the last before bed, I've lost that security blanket of believing 'it can't happen to me' and I do find that I'm more distracted, less interested in things (almost as if my brain can only fit so much... and a big part is now filled with crohns :redface.  

But, I do appreciate the stress-free, good times much more...  I love to see my kids enjoying normal life, I don't take for granted those evenings when we all happen to be home and watch a show together, or are just fooling around at home, just last night, in bed, I thought 'everyone's home, everyone's safe and everyone's healthy - I can just relax'!


Sascot - :voodoo:  :voodoo:  :voodoo: to your so-called friend!!!  But, you're not alone there either...  while I haven't had a friend 'dump' me, the woman who I thought was my best friend hasn't been there for me at all and, other friends who are 'there', just can't really understand the worries so I usually just keep the crohns conversations fairly simple... 

:ghug:


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## Farmwife (Feb 11, 2013)

Interesting subject.

Survive mode is an excellent term. I can't really say if I'm absent minded, since I've always been this way all my life. BTW, laughter is the way I deal with stress and sadness. Sit next to me in a funeral and I'll cheer ya up. Yes I know it's a mechanism for dealing with the added stress.
On the serious side, I always remind myself of other's who have it worse then her. Each time I hook up her n-g tube I thank God it's not an oxygen tube.:heart:
I too have been dealing with sheer tiredness. I feel like I could sleep for months get up and eat and then sleep some some. Overeating is also a bad problem I have in the way of dealing with stress. It doesn't help when your a farmer's wife and your hubby loves his snacks, desserts and pop. Right now I have no will power to say no.

Still I'm gratefully to this forum and y'all support. Who knows how fat I would truly be with out all of ya!:ybiggrin:


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## Tesscorm (Feb 11, 2013)

I also come for my 'balance', my yin and yang so to speak...  from who else but Farmwife and Crohnsinct!!!  :lol:  

We get men in uniforms and poles along with church potlucks and princess dresses!  (one guess who's who!! )  

And, ALL in ONE thread!!!  :kiss:


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## Clash (Feb 11, 2013)

Sascot, that is awful! It has happened for me more like Tesscorm explained, closest friends with healthy kids just get glazed over eyes if Crohns comes up. The one that does take the time to listen has a son with autism and I think that is why she doesn't get the glazed over look.

When things are good it is so easy to put the CD obsession away but it can jump back to the forefront with the slightest little symptom. This forum has been awesome, a way to come to grips with the fact that I can't control every aspect and the support here is amazing.

Please forgive the typos, I'm on the mobile.


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## Farmwife (Feb 11, 2013)

Tesscorm said:


> I also come for my 'balance', my yin and yang so to speak...  from who else but Farmwife and Crohnsinct!!!  :lol:
> 
> :


Ya sorry about that. Crohn'sinct is sooooooo hard to control.:rosette1:


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## kimmidwife (Feb 11, 2013)

What an awesome thread!
I have to agree with the survival mode when Caitlyn is ill. I also obsess over every little symptom and complaint. Now that she has finally had some good months I am trying to relax a little more. We have had a rough few years between her getting sick six weeks after my youngest was born and then I got sick and injured life has been nonstop. Stress has been nonstop as well!


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## Jmrogers4 (Feb 11, 2013)

Yes, Survival mode.  I have no problem falling asleep as I'm exhausted it's staying asleep that is the problem.  Waking up a 3 am and having to go check on him just like when he was an infant and first slept through the night, then my brain is going a 1000mph What about this? What if that? What will we do when?

Every little thing is it because of Crohn's?  I try and have "date" nights with each of the boys where just the 2 of us go out to dinner and movie or something and talk about anything but the other brother or in Jack's case anything but his younger brother and Crohn's.
Can't even imagine a friend (and I won't say best because they wouldn't do that) who would dump you for having a sick child.  Although I don't talk specifics with my friends about it, that is what you are all for, because really they don't care what his BM looked like it is more generalization. Both of my two best friends are caregivers, one is an RN and the other has her masters in Physical therapy and works at the hospital Jack goes to so they usually ask more questions.


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## Devynnsmom (Feb 11, 2013)

Like so many other I also go into  survival mode. I have also become a bit OCD I think when it comes to Devynn and her signs and symptoms. Every little pain, I worry about. Every time she gets super gassy, if her eyes look dark, if she seems tired or worn out.

 Its hard doing it on your own. I am a single mother and my kids have no contact with their father. Long story, but it is what it is and we are all better off this way, believe me. I worry about her all the time. When things are good like right now, I can breathe a bit. But as soon as she gets a pain, or something it all starts all over. 
I have no real friends in real life I can talk to because as much as I have tried to educate them (the ones who are interested), they just don't get it. I've been told , well atleast its not cancer! Yes, OMG I thank god every day that this is not a terminal illness. But it is a lifelong, illness that makes her (and all our IBD kdis) sick, in pain etc. I have kind of backed away from friends who act like she's faking, or things can't be THAT bad etc. Both my parents have passed and I don't like to put it on my older kids. But they are great when I really need to vent and have nobody. I just don't like to dump on them. 

I have trouble sleeping most of the time, but ESP if she's not well. My mind just doesn't seem to want to shut down and let me sleep. I am SO happy I found this forum. I don't know what I would do without all of you. I've never felt like I'm asking stupid questions, or that people think she's over acting *huge eyeroll* When I post, I have people replying who actually care, and who are full of experience, and ideas. 

Great thread BTW


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## Devynnsmom (Feb 11, 2013)

Sascot, I have also lost friends. But mainly because I have walked away. I know it hurts, but if she was a real friend she would have never left your side. (((((hugs))))))


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## Crohn's Mom (Feb 11, 2013)

Its like post traumatic stress disorder right ?!?!

When they are feeling "good" we train our brains to relax and try and breath, and we've all learned to appreciate the simple smiles and lack of symptoms for the time being, whether it be a day, a week, a month.  We also take that down time to try and "make it up" to our other loved ones we hold so dear.

But oh my, when our IBD child says "I don't feel good", we find ourselves like a deer in the headlights and the rest of the world fades to black, and it's all we can see...Crohn's , it's Crohn's,...it has to be right ! <sigh>

At least we all seem to be very self aware, and we should all learn to treat ourselves with a gentle hand and heart; just as we do our beloved babies :heart:

(yes, easier said than done...we all know! :ack: )


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## Crohn's Mom (Feb 11, 2013)

Oh ya...and not just a gentle hand and heart ~ let's not forget to treat ourselves to WINE!!
LOL 

:beerchug::applause::beerchug::applause:


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## my little penguin (Feb 11, 2013)

I come here to de stress. After a year and half things are better .
I sleep better.
But each new thing symptom or drug rxn it starts again.
Is it crohn's ? Is it something else.
I switched jobs to a job I love versus a more flexible job I had before that I didn't like so that helps.
I read trashy novels . I try to watch bad tv .
I volunteer for another forum which has nothing to DO with crohn's so that takes my mind off how bad it is.
I pull every technical paper I can find on what's currently going on with DS or another forum member so I can help be in more control at least in what I know so I can have a conversation with the doc when needed.
Friends / work get the glazed look as well so I just shrug and tell them not to ask how DS is doing.

I am out of survival mode longer and longer .
CIC , Tess , clash and FW help by bring ing the wine , firemen and clean jokes.


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## kimmidwife (Feb 11, 2013)

Crohns mom you hit the nail on the head by saying it is PTSD. It Absolutly is! Enough said. Where is that wine?  I could use some about now.


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## Clash (Feb 11, 2013)

Yes, I can honestly say for me CD will always be irrevocably tied to firemen, wine, poles, roots and cow tipping!!! Which is great in a way because it brings a little warmth to the soul when the black dog of CD rears it's ugly head!!!


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## Tesscorm (Feb 11, 2013)

:rof: :rof:  You are so right!!!    Wish I'd remembered all that stuff last night...  drank a decaf green tea which kept me up till 3am!!! :ymad:  Realized I have schizo-gut complex...  

Between 1-2am, my gut was screaming why hasn't the remicade approval come in, OMG, Stephen's been untreated for MONTHS, it's a time bomb waiting to blow! What if fistulas are forming and I don't know?!?  Why oh why can't I just order my own blood tests whenever I want!?!?   

Between 2-3am, my 'other' gut was screaming, NOOOO, he doesn't need remicade, please let the denial come in so I can push for LDN again, he's been stable on EN for 1.5 years, nothings changed!  Of course, we have time to try LDN!!!  He's doing so well, why am I going to allow him to take meds he doesn't need?!?!?   

Yep, I'm sure it was the decaf tea keeping me up!  :ybatty:  Next time, if I'm going to be up half the night, I'm going to think fireman, wine, poles.....  and smores!


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## Clash (Feb 11, 2013)

HA! Tesscorm you sound exactly like me, poor C couldn't for the life of him figure out why I smiled everytime he said the virus was kicking his butt... I was thinking YIPPEEE a virus no CD, of course for about 3 hours now I've been second guessing all that and waffling back and forth!!!

And don't even get me started on the MTX, ok well if it's not working it's gotta go, I'm just going to tell 'em then wait what will they want to move to? How is it possible that I can have a kid that doesn't show one symptoms for weeks then BOOM here we go. He is now saying his tummy feels on edge and off...gonna be a late night for me! I think I will stay away from the green tea!

Maybe a mantra will help...."Firemen, poles wines and roots...firemen, poles, wines and roots.." with a little FW voice chiming in "don't forget the cowtipping!" Yep, I'm losing it!


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## Hope345 (Feb 12, 2013)

I love all of you guys!!!   This is an unexpected surprise to find this thread.
I have to say ditto to EVERYTHING!!!  
All of you have been more comforting than any friend or family member (except my husband and daughters).    I have had to push them all away.
The anxiety and worry a mother has, only another parent going through it really understands.

It has been the longest, hardest year of our lives and I am so glad to have all of you there when needed.
thank-you to all....       you have been a blessing.

The friends I have made on here I will treasure forever: Moms, Dads, teens, sisters and brothers.  My heart goes out to each of you.:heart:

My latest favorite quote:   
"Don't wait for the storm to pass, learn to dance in the rain."

I could not have said that a few months ago


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## Twiggy930 (Feb 12, 2013)

I had a very hard time coping with it all for the first 6 or 7 months.  I took a leave of absence from my job for about 6 months because I couldn't manage the juggle anymore.  I often felt like my mood was dependent on how well my son was feeling, the good days were great but I would come crashing down when he had a bad day.  I felt tremendous frustration when my son was still having chronic pain but the doctors were saying he was better because all his labs looked good.  Most of all I felt incredibly drained by the awfulness of watching my child in pain night after night and having no clear way of fixing it.  

To cope I watched trashy TV and read trashy novels (Hunger Games series was a good one).  I read everything I could get my hands on about Crohn's.  I read about different diets and although none of them helped just trying them made me feel like I was doing something to help ease my son's pain.  When the days were really bleak (mood wise) I would drag myself and my son out to a park bench to get some sunshine whenever possible.  

For the last 4 months things have been a lot better.  My son no longer has so much chronic pain and he is finally able to get through a full day of school.  I have returned to work although I still at times find it hard to juggle work, sick kids and all the appointments.  Now that things have been more normal for awhile I find that when my son has a bad day I no longer crash so hard but I still get that sinking feeling in my chest.  

This forum, and all of you on it, helped me tremendously over the last year.  I love that I can come on here and find a bunch of people who know what I'm going through, it made me feel less alone.  Thanks everyone!!!


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## Catherine (Feb 12, 2013)

The girl at work can't understand why I can past the fact she asked me whether my child was terminal ill and if she that I sick say I should changed specialist.  My boss said I may have given her a reason to try and get back at me.  

This woman is saying that we bully her.


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## crohnsinct (Feb 12, 2013)

I am a control freak and have to know every little detail and have to be 5 steps ahead of the doc at all times.  Enter the forum and MLP!  I came here looking for information.  I never expected to find friends that I now hold so dear and close to my heart that my friends near my home are actually a little jealous.  I too have met with that glazed over look and disinterest.  I love my forum friends.  Where else do you find a friend who is so obsessed about your child that she forgets to call on her own child's test results?!  I love that you all will obsess and research every little thing with me.  You have cried with me and shared in every little and big bit of good news.  So yes, my answer is the forum and my forum friends!  

I also keep turning to my faith.  I read daily, pray daily, and participate in small groups.  It helps to realize that although I try to control everything it is really God who is in control and I have to let go and trust in the Lord.  When I need comfort He is the great comforter.  

WINE!  Yay dat! Nuff said!  

Sorry I didn't realize I was talking about church potlucks and princesses so much.  I will try to find something else to talk about from now on:whistleinnocently:

Last but not least I look at O. So strong and resilient.  She doesn't let Crohns occupy her every thought.  She doesn't let it crush her joy or spirit.  If this is happening to her and she is approaching it with such grace and balance then I feel I should too.  The one true blessing CD has given me is seeing what my child is made of.  I have learned so much for her and am blessed that God put her in my life.


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## Clash (Feb 12, 2013)

CIC, you better keep the humor coming...there can never be too much of that!! If there have been silver linings to this horrible disease, top of the list would be the friends I have gained from the forum!! To always have someone ready to vent, cheer, research and lift me up! I hope I do the same for other members here!


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## jmckinley (Feb 12, 2013)

Same here...many days are autopilot. Foggy-headed days getting my work half done, sleepless nights, and over-controlling everything (Ryan will attest to that one)! My friends here are wonderful except that they just don't understand, especially about the controlling part. I am so thankful for everyone on here! My cheerleaders and counselors!

CIC - yes, I love seeing how strong Ryan has become in all of this. 

Farmwife, you should be raising Ryan! He loves to be funny at the most inappropriate times. My hubs says we are raising Jim Carey!

I volunteer with Miracle League which is a baseball league for people with disabilities. Ryan buddies with many of the players. Spending time with them helps both of us stay grounded and grateful.


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## Jenn (Feb 12, 2013)

Great idea! It's a roller coaster.... 

Frustrating when you cannot be in control to help your child suffer less. stabs to the heart... 

But then such relief when they are doing well. And fear about how long it will last...

It took me a good couple years to get to acceptance, but it's still not easy. We get by day to day.

I mostly have it together, but things will tip you off the cliff again. I was managing Alex having a bout of flu last week and a trip to the ER at 4am for fever and asthma. But then I totally lost it last weekend when we had a local 6 hour power outage. Made me realize that maybe I wasn't really coping well at all. 

My escape is video games. seriously addicted!


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## Marni's mom (Feb 13, 2013)

WOW!  I just checked back to see the responses to my question, but now I can't read them through the tears that I can't seem to control.  I wish I could invite you ALL to my house where I'd serve you margaritas, antidepressants and lots of hugs!  LOL.
It's 5am, and I'm going to try to get some sleep now that Marni has FINALLY fallen asleep.  It's been a bad night for her.  I'm glad I don't have to be at work until the afternoon so I can catch some sleep.  I guess no school for Marni again "tomorrow" (later today).  Sigh.
You are all AMAZING parents.  I'm in GOOD COMPANY, thank you.


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## CarolinAlaska (Feb 13, 2013)

I'm so sorry Marni had a bad night.  I hope you both get good sleep and wake up refreshed.


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## Brian'sMom (Feb 13, 2013)

I feel often that crohn's is my life. I used to pray for a cure...lately I just pray for crohn's to take a back seat.  Its a disease that seems to NEVER LET GO!! My son owns it and he also knows he can completely lean on me. But the last year I think my husband has kinda checked out. He seems to listen with one ear...I think its his coping.  I'm lucky to have such a great son that is so funny and upbeat. He hates having this, but rarely complains. He just does each day and tries to live like he doesn't have it. I think some of that is due to being so vigilant on his health...I get tired of all the...thinking...thinking...and watching...watching...more thinking... etc. Therefore...crohn's is my life............SORRY so Wah Wah Wah...Its one of my weaker days.


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## Kimberly27 (Feb 14, 2013)

My 17 year old son, Reed, was diagnosed three months ago, so I am new to this.  I finally had the time to catch up on paperwork.  I found myself recycling papers, receipts, and ticket stubs with the thought, "Oh, that was before the Crohn's diagnosis".  I feel like the diagnosis has been the dividing point between "the old life" and "the new normal".  (Sort of like BC and AD on a timeline!)  

I'm pretty tough.  I'm a martial artist, climber, (sixth grade teacher- LOL for listing that under "tough"), etc.  But this?  This really took me out! It was hard for me to relate to the "depressed me" and hard for my friends as well.  I had to go on antidepressants to make it through the day without crying.  I also take Trazadone at night as an anti-depressant booster and sleeping aid.  Without sleep, I'm useless. I saw a counselor. I had to give in to all of this and have faith that the dots in life would somehow connect.  

I'm back at the martial arts studio.  Sometimes it feels great to hit something!  I mediate, talk to friends, cry with friends, and try to have a little fun.  (My son and I are playing the Walking Dead and Lego Lord of the Rings video games together when he has bad days.)  I try to be silly whenever possible.  I force myself to wear colors other than black.  I listen to a great mediation (hypnosis piece) every night when I go to sleep.  It's the best one I've ever found.  It's called Deep Relaxation by Doreen Blumenfeld (Itunes).  That and a great eye mask help me sleep when all else fails.

Oh yeah, red wine, dark chocolate, and foot rubs help too!   

It's been great meeting all of you.  I'm so glad I found this forum.  You are helping to heal the hurt.

Happy Valentine's Day.  

Kimberly


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## Devynnsmom (Feb 15, 2013)

Kimberly,
I'm so glad I found this forum too. We went through years before diagnosis and 3 years after with nobody to talk to. My family and friends just don't get it. They think IBD is IBS and that Devynn just has a sensitive stomach. If only it were that easy.


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## chefmommaof6 (Feb 15, 2013)

This is a great thread.  And am I the only one who feels like I am really hugging people when I press the hug button on here? Lol It's the most powerful feeling I have all week! lol   HOw awesome is it that just by hitting a button I can throw support someone's way? Seriously.  Anyway, I am probably too new to all this to add much to the actual discussion.  Two months in, I mostly am still trying to translate all the medspeak and such, still pretty overwhelmed but trying to just take it moment by moment.  I am a bit OCD already, not sure a dx like CD helps anything with that. Lately, I have just felt really tired.  I have really been rethinking alot of our time commitments lately with regards to kids activities; I mean, how great is it for them to be involved in more stuff if their mom is tired and overwhelmed?  NOt so great, actually.  I am following through on our commitments for this school year as I can, but I will definitely be taking a really hard look at what we say yes to come next school year, as well as this summer.  And I have not had a vacation since before we moved a couple years ago.  I am well overdue, but it looks like we may be traveling to the hospital in Cincinatti, adding a day or two to sightsee and calling it a vacation this year, due to financial constraints.  What I really want is to go to the beach or some all inclusive resort in the Bahamas. lol


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## Devynnsmom (Feb 15, 2013)

Chefmommaof6, I feel the same way about the hug button. I use it and feel like I've sent out a cyber hug. When I receive one, I feel like I've been hugged


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## chefmommaof6 (Feb 15, 2013)

Rofl I am a touchy feely, huggy person as it is. lol Hopefully, I won't become too overly obnoxious with it.  But Having a hug button is probably dangerous for me. I am too empathic to not want to hug someone.  If my family ever finds out, they might have to have to have an intervention. lol I wish FB had a hug button....it's like 10,000 times better than just "Liking" something.  If only all of life were that easy, huh?


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## Henrietta78 (Feb 15, 2013)

I try to remind myself that everyone on this earth has trials, and their cross to bear.  I try to look at my son's IBD as a condition to be managed because "disease" is too scary of a word.  I try to focus on the good changes it has brought about for our whole family as far as being more healthful in our food choices.  I look at my son, and how brave he is in the face of blood draws, and his sense of humor when we get to "play scientist" (i.e. stool sample collection), I am thankful for the days he feels good, eats well and has "perfect poop".  I try not to borrow trouble and let the "what if's" crowd my mind.  I try not to let IBD define who my son is...it is a part of him, but it is not all of him.


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## Farmwife (Feb 15, 2013)

Henrietta78 said:


> _* I try not to borrow trouble and let the "what if's" crowd my mind.  I try not to let IBD define who my son is...it is a part of him, but it is not all of him*_.


:heart:Thank you, we would ALL do well to remeber these words.:heart:


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## Devynnsmom (Feb 15, 2013)

lol chefmomma!


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## Jmrogers4 (Feb 15, 2013)

chefmommaof6 said:


> Rofl I am a touchy feely, huggy person as it is. lol Hopefully, I won't become too overly obnoxious with it.  But Having a hug button is probably dangerous for me. I am too empathic to not want to hug someone.  If my family ever finds out, they might have to have to have an intervention. lol I wish FB had a hug button....it's like 10,000 times better than just "Liking" something.  If only all of life were that easy, huh?


Have you found the hug emoticon :hug: or :ghug:


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## CDJ (Feb 16, 2013)

Devynnsmom said:


> Like so many other I also go into  survival mode. I have also become a bit OCD I think when it comes to Devynn and her signs and symptoms. Every little pain, I worry about. Every time she gets super gassy, if her eyes look dark, if she seems tired or worn out.
> 
> Its hard doing it on your own. I am a single mother and my kids have no contact with their father. Long story, but it is what it is and we are all better off this way, believe me. I worry about her all the time. When things are good like right now, I can breathe a bit. But as soon as she gets a pain, or something it all starts all over.
> I have no real friends in real life I can talk to because as much as I have tried to educate them (the ones who are interested), they just don't get it. I've been told , well atleast its not cancer! Yes, OMG I thank god every day that this is not a terminal illness. But it is a lifelong, illness that makes her (and all our IBD kdis) sick, in pain etc. I have kind of backed away from friends who act like she's faking, or things can't be THAT bad etc. Both my parents have passed and I don't like to put it on my older kids. But they are great when I really need to vent and have nobody. I just don't like to dump on them.
> ...


You could be writing my story!   What you have said is so much the same, I am a single parent too, who feels very much on my own with this.  I have been questioned by "so called friends [ and my sister ]" as to whether my son is faking some of the symptoms. :yrolleyes:  Few people have an understanding of this disease and think that they will grow out of it, or it is caused by what they eat!
Like you I notice every little thing my son has and wonder if this time the flare up is starting.  I know I drive my son mad sometimes asking him if he is okay :boring:

His dad lives 300 miles away and has a new family and has no understanding of what we go through, and doesn't seem to want to.

I often feel I am fighting a brick wall trying to get help for my son and wish sometimes I had someone here to just be on my side and give me a hug.

It has been really good for me to find this site and to find parents going through the same thing and understanding everything.

Devynnsmom, on a slightly different subject, I see you are from Toronto, I have an older son who lives in Toronto too, and will be coming your way in the summer.:canada_flag:


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## Devynnsmom (Feb 16, 2013)

CDJ, I'm sorry you are going through this alone as well. I'm also sorry we have crappy (no pun intended) people in our lives and our kids lives who are ignorant to learning what IBD really is. 
This site really has been amazing for me. I really felt so alone and lonely before when it came to Devynn's disease. I also have older kids (18,22,23) but I don't like to lean on them. They are great, but it just doesn't feel right. They ARE my biggest support off these boards. They are eager and willing to learn everything there is. They often come to me and say Mom did you hear.. or did you see ... on the news? 
I am from Toronto! What part of Toronto is your son in? How old is your IBD son? Devynn is 11.


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## CDJ (Feb 16, 2013)

Thanks Devynnsmom, it is nice to know I am not alone dealing with this, and as I said good that there are others to talk to who understand.
My elder sons are 37, 35 and 33, all long flown the nest, but all a great help when need be.

My son with IBD is just 12, he was 8 1/2 when diagnosed, so he is a similar age to your daughter

My elder son, Scott, lives in Western Battery Road, it isn't too far from the lake. He married a Canadian from Winnipeg and has been in Canada for 10 years this year.  They lived there for the first few years of their marriage, then moved to Toronto 5 years ago.    I love Toronto, and can't wait to come over in the summer.  My youngest won't be with me this time though as he is going away with his dad.


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## pipmom (Feb 16, 2013)

So glad to see myself in all of these parents. Feel so isolated sometimes trying to do this as a single parent. Even being a nurse for 35 years doesn't matter when your own child is chronically sick and you can't fix her.Also have a grown daughter with Crohns. I'm about OCD'd out. Our problem has been dealing with doctors who think they know all of the answers, but fail miserably when it comes to complex problems with IBD. Parents please seek second opinions at larger hospitals who specialize in IBD. Doctor egos need to go out the window when it comes to the health of your child. There is so much trial and error, and every patient responds differently to therapies. We need a breakthrough with IBD and soon ! Thank you all for venting your pain. I feel you.


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## Devynnsmom (Feb 16, 2013)

CDJ ok, thats not too far from me.


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## Brian'sMom (Feb 18, 2013)

Devynnsmom said:


> CDJ ok, thats not too far from me.


Wouldn't it be so neat to have a Forum Get Together? We'd all get to meet after talking by forum for so long! This forum joins us all over the world!:heart:


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## Mehita (Feb 19, 2013)

I just came across this thread. How appropriate considering I'm in that woozy, hazy, been-up-all-night daze. 

I don't cope well. 

I hate to say it, but I think Crohn's pretty much runs our life. I try really hard not to let it, but sometimes it just does. Even on good days, it feels like we're all waiting for the shoe to drop. Then the dog will puke and I'll think, "Great, the dog has Crohns too!"

Physically, I tend to stop eating when my son is sick. I get this pit in my stomach that has become all too familiar lately and I have to consciously force myself to eat, take vitamins, and drink water. Mentally, I just hold it all in until everyone's asleep and then cry my eyes out. I hate this disease.

And no one seems to understand except for you guys. It wasn't until one ER visit, two hospital stays, and one surgery all in one month before people around me realized that I'm not making this all up.

Sorry for the negativity... just feeling the stress this morning and wishing the nurse would hurry up and call back.


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## Devynnsmom (Feb 19, 2013)

Brain's mom.. That would be SO cool!


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## kiik (Feb 19, 2013)

This may come across as a little cheesy and I don't mean to intrude, but I just want to say that you are all FANTASTIC parents. I am 19 and as much as I love my parents, they aren't really involved and don't like to hear new things I am reading about or really discuss Crohn's in detail, which is frustrating. I'm sure your support is helping your kids through this and they are all lucky to have such great parents looking after them!


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## Devynnsmom (Feb 19, 2013)

kiik, 
You are not intruding! I am so sorry your parents are not supportive  They probably feel helpless. We will support you here. We will be here for you to talk to, vent, ask questions and be a shoulder to you if you need one (actually several shoulders). We (I know I speak for others) are interested in hearing things from your point of view, and welcome you. (((((hugs)))))


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## Crohn's Mom (Feb 19, 2013)

Ditto to what DM said ! ^^^


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## Clash (Feb 19, 2013)

Kiik...ditto for me too. Also there are plenty of young people on here to interact with and bounce symptoms, treatments or vents off of, please take a look around the forum!


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## Tesscorm (Feb 19, 2013)

Couldn't agree more as well...  

kiik, I also agree with DM re the helplessness your parents may feel; it may be their way of coping.  Unfortunately, it may leave you a bit stranded at times.   Please feel free to come here to ask questions, advice, etc.  There's always someone with experience and lots of support!

Also, as was said above, your insight will also be appreciated! :ghug:


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## Jmrogers4 (Feb 19, 2013)

Mehita, Hope you hear from the nurse soon.  I hate waiting!  I hear you on the Crohn's running your life.  Even when life is good there is still that nagging, watching and waiting in the back of your head and for every little bug, virus, rash,  etc. you think does this have something to do with Crohn's is it a flare coming on? What can I do to stop it?  I have to tell myself all the time that not everything has to do with Crohns


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## CarolinAlaska (Feb 19, 2013)

Mehita, sorry you're having a bad day.  I hope the nurse can give you good direction that really helps.  I'm sorry you feel alone among your friends.

Kiik, I second what everyone else has said.  Parents respond differently, but it may be their way of coping, or of trying not to get confused.  Some like the denial route or perhaps the "ignorance is bliss" track.  My poor daughter gets the opposite - I have to know about each day - how was her tummy, her joints, how many stools and what kind - and then I share it sometimes on the worldwide web (here).  Poor girl.  I'm sorry your parents seem disinterested.  I hope that you can find the answers to your questions and the support you need here.


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## Brian'sMom (Feb 19, 2013)

Kiik, You're always welcome here!! And I agree that some people can't handle the pain of diving in and really 'living' the disease with their loved one. Have you mentioned it to either of your parents? Maybe they think they are doing you a favor by 'not bringing it up'.  My husband and I lost a baby when I was only 18 weeks pregnant. My husband's parents never mentioned him...while my parents celebrated him and pray to him...(They all had held him). Then after we asked, My husband's parents told us it was too painful for them to see us cry and they were 'protecting us'...they didn't realize we wanted to talk about him...even tho it made us cry. Just an example. I originally thought they didn't care and it was not the case at all.


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## Hope345 (Feb 19, 2013)

Brians Mom:   I would love to meet all of you someday    I am like you, I like to talk about the loved ones we have lost.  I talk to way to many people I meet about Baylee's Crohns.  I am getting better.  I do not tell everyone I meet anymore   I am sorry you lost your little baby

Kiik: You are going to have more support than you can imagine here 
        We are all like Carolinalaska, we want to know everything!!!

Mehita:  I get that  feeling too, when our daughter is sick.  Please feel free to vent,  I am still in awe how we all have so many of the same feelings, concerns, and day to day similarities to our lives as parents of children with this disease.


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## Clash (Feb 19, 2013)

Coping skills aren't at their top level right now. I have no idea what is going on with C and I have this test tomorrow that has my anxiety levels up!

I can cope with fighting this disease even if it seems we are losing rounds but the "waiting for test results" just about pushes me over the edge, its when I feel the most vulnerable! When I know the results it is like having the ground to stand on and fight.

So ready to get the next few days behind C and me.


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## my little penguin (Feb 19, 2013)

Hugs
I don't do well with unknown either - too hard to research
Hopefully they will come up with a plan quickly for C 
So you can breathe  a least a little


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## Jmrogers4 (Feb 19, 2013)

yes, that is my problem as well - need to take action and can't take action if I don't know.  Hope you get answers soon Clash and hope your tests give you the results you are looking for as well


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## Clash (Feb 19, 2013)

Thanks guys, luckily I will get my results tomorrow and hopefully it will be quick with C. But I just wanted to say that draw strength from the relationships we have all formed here. I'm normally not one to suggest or ask or demand things but all of you advocate for your children with such compassion and determination. So I always draw strength from each of you!!! Thanks for all of it guys!


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## Tesscorm (Feb 20, 2013)

Waiting and not knowing really are the worst!!! :ymad:   Clash, I hope you get solid answers today!  Lots of luck and hugs!!! :ghug: :ghug:

And, yes, totally agree that we all give each other strength!  I'm not usually pushy (then again, until Stephen was diagnosed, perhaps I never needed to be??) and, when I do feel 'weaker' in advocating for Stephen, you're absolutely right that it's all of you and your determination that sets the bar for me.  

If I know you all are pushing, suggesting, advocating then I don't feel like I'm 'wrong' for doing so for Stephen.  Also, the knowledge we've shared gives me more confidence in speaking with the GI...  I'm not easily sloughed off (nor are my questions) because I now know enough to either understand the answer or know what questions I need to ask to further clarify.  And, I'm okay pushing for my understanding because I know all of you do the same! :hug:


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## kimmidwife (Feb 20, 2013)

Yes clash thinking of you guys today!


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## CarolinAlaska (Feb 20, 2013)

Clash, praying for you and your son today.  I hope all is going well.


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## Brian'sMom (Feb 20, 2013)

julie345 said:


> Brians Mom:   I would love to meet all of you someday    I am like you, I like to talk about the loved ones we have lost.  I talk to way to many people I meet about Baylee's Crohns.  I am getting better.  I do not tell everyone I meet anymore   I am sorry you lost your little baby


Julie, I'm also trying not to talk about crohn's as much to people outside this forum, another reason we need each other here.

And thanks for your comment about our baby. It was 19 years ago...so its easier of course. I only mentioned it for the reason that some people don't bring up what they think is 'negative topics' all for good reasons. Not cause they don't care.

I also am amazed how similar all of us are in our feelings and how we deal with this crohn's disease. Again feel so fortunate we have this forum.


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## Mehita (Feb 20, 2013)

You guys are all awesome 

Hope you're doing ok, Clash. Been thinking of you all day.


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## kiik (Feb 20, 2013)

Thanks everyone for your support, you are all too kind! I know my parents love me and they are really great, so don't think I'm totally on my own! I think you are all right that it's probably more of a coping mechanism than anything else. They are away right now but when they are back I think I will probably try and talk to them


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## Niks (Feb 20, 2013)

Slightly anxious too..  Been talking to IBD nurse over last  week, she has been talking to GI, and has assured me that he now does believe that there is more going on than Coeliacs!!

So will let us know his plans for her tomorrow..  J not really holding anything down, pain seems worse too.. getting pretty scary..

Fingers crossed he will finally schedule an MRE!!

x


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## Jmrogers4 (Feb 20, 2013)

Hope they keep moving forward and you get answers soon


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## Catherine (Feb 20, 2013)

Wishing you all the best for tomorrow.


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## RunningDownIBD (Feb 20, 2013)

I had to start from the beginning and read all these posts...so powerful and touching.  I feel like I cope ok sometimes, but at this particular time, I'm just wiped out.  I'm a single mom, too.  My son has been sick almost without a break for 2 years plus now.  We are in a frustrating place where Dylan's been in a flare that resulted in adding some prednisone which is tough for him, lots of side effects, and then methotrexate.  He spent the next month vomiting every day and with a fever.  Doc and ped GI agreed he had a virus but with remicade, mtx and pred apparently his horrifically immunosuppressed body just couldn't fight it off.  He weaned all the way off the pred and had about 2 days of feeling decent before experiencing Crohn's symptoms again.  Don't know what to do right now.

In the meantime, my own Crohns is beginning to flare but the worst has been a really nasty bout with arthritis that has been going for about 6 months.  I run to cope but lately running is rough - with hip, knee and ankle pain; work is tough with terrible hand pain.  Fatigue is through the roof with being up with Dylan and trying to deal with side effects of having started mtx injections myself 10 weeks ago.  I have no vacation or sick leave left and already took 8 weeks family leave when Dylan was doing worse less than a year ago. 

I'm just really struggling...feeling overwhelmed and tired and unable to do anything well.  At work I'm thinking I should be home.  At home, I'm fearful of losing my job and insurance.  I don't even have the energy to cry.

I am so grateful to have a wonderful relationship with Dylan and also my daughter who is at college for her freshman year.  I have friends who drag me to the gym for yoga and other good things. I'm grateful to have found this site and look forward to getting to know everyone.  Thanks for listening!


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## CarolinAlaska (Feb 21, 2013)

Jodie, I'm so sorry your life is so rough right now.  I can't imagine dealing with such a sick son when you are so sick too, and doing it on your own.  I'll be praying for some healing all around in your home and family.  I'm so glad you have a good support system around you!


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## Marni's mom (Feb 23, 2013)

I'm back!  If you look at how many posts I have compared to the rest of you, I'm a "new kid on the block", but I already feel like this has become a community of friends, and I missed you!  When I started this discussion/thread, I feared I might come off as sounding selfish for wanting to have a place to cope and vent instead of discussing my daughter's Crohn's symptoms and treatment, but clearly this has been a blessing and an eye opener.  A blessing because of all the friends I feel like I've found here, and an eye opener to learn that I and we are not alone in our experiences.  So many of you have commented that you could have written a certain post because of the vast similarities.  I couldn't agree more.

Marni had not been doing well for the past few weeks.  When I say that, I mean she's been worse, because she's never really been "well" since her diagnosis five years ago.  So, we put her back in the hospital Friday a week ago for another MRI.  I was hesitant to go along with it because none of the other internal tests have every shown anything, including the MRI done last summer.  Then, on Sunday, when we were being discharged, the doctor in service from our peds GI group told me that the MRI was negative.  I was pissed off because I told our doctor when he suggested it, that I didn't understand why we were doing this again when no scope, MRI, upper GI, pill cam, etc has ever shown anything significant before and I had no reason to expect it to be any different this time.  Getting in IV started in Marni these days is almost impossible, and sometimes she has to be sedated just to get it going because they hurt her so much digging around for a vein.  So, I put her through all that torture for nothing.  BUT.....

Then, on Wednesday, when we went for her every-other-week visit with her GI, he told me the MRI was NOT negative, but rather showed inflammation in the descending and sigmoid colon. He talked about how the pain she's been having and the phantom poops were because that part of the colon was working hard to get what it "thought" was poop out, when it was really inflammation.  Then he told me about the new drug he was starting.....the steroid foam.  I have no idea how I managed to go through this forum without learning about the foam.  

All I could do was laugh when he told me.  I went from crying from the frustration of her constant pain with no relief to laughing when he told me how to administer the foam.  I didn't laugh because rectum discussions are funny.  I laughed because I had a very vivid image in my mind of how that was going to go at our house.  I asked him if the foam came with a crowbar because i know first hand how tightly my little 10 year old pricess can clench when she is in protection mode, if you know what I mean.  

He got this "Well YOU ARE the parent" vibe going, and I just said.....I know her, and I know that ain't gonna happen.  LOL  Then I asked him if we could get a home health nurse to come to our house to administer it the first couple of times and if not, could he give me a Rx for a sedative for ME for when I had to do this.  LOL

I obsessed about it for two days, but finally sucked it up and decided to "git her done" last night.  She fought a bit, but once I got the message to her that this was going to happen no matter what, and even if it wasn't last night, it would be the next day, she relented and let me.

Now comes the "am I crazy" part.......Am I crazy, or is it possible that this stuff is so good it actually started helping after ONE half-assed (no pun intended) application?  I wasn't really even sure I had done it right, although she assured me, it felt right!  LOL

Wow, I sure have rambled on, haven't I?  i'm sorry.  

So, my point was that I missed you guys.  I read all the posts that were written while I was away from the forum and I wanted to answer each one separately....you all have had such wonderful things to say to each other.  I loved the idea of someday having a real meeting....fun stuff.  But, before then, if any of you head down to Texas, Houston, specifically, I hope you'll let me know before then.  

To kiik specifically, there are many of us who are old enough to be your parents, so consider us your "foster" Crohn's parents and lean on us.  Maybe you could show your parents this thread and ask them to read all the comments so they can see they are not alone in watching their child suffer as they have.

Well, gotta go....Marni just came out of the bedroom saying she's hurting and wants to lay on the couch next to me for a while.  night night all.

Stacey


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## Marni's mom (Feb 24, 2013)

Oh, and a nutter thing....if I sound "upbeat" tonight, I'm making up for being a teary puddle of nerves the past week.  The school principal didn't know what to do with me yesterday when I stopped in to talk to him about Marni's grades and how much school she's missed.  She's missed 50 days so far this academic year.  I cried the whole time and kept apologizing and assuring him it wasn't anything he said or was doing, but rather pure exhaustion from lack of sleep and dealing with Marni's pain and spending her days in the bathroom.  From some of the posts I've read about some of you losing friends over this, I'm so lucky that no one ran away from me screaming after the past week of dealing with "mentally unstable Stacey".  LOL.


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## Ann27 (Feb 24, 2013)

Sooo happy I found this group!  12 yo daughter diagnosed with crohn's about 1 month ago.  I feel as though my world has been turned upside-down.  My kids were healthy..especially my daughter.  And the medicines!!! I rarely even take an advil myself, now I'm giving my daughter 6 different meds!  I think I am ever-so-slowly coming to terms with everything.  I HAVE to accept what has been dealt...I tried to ignore the signs that something could be wrong for about a year.  Now I just have to accept it all, but it is SOOOO hard!  My daughter doesn't want anyone to know about her condition, so even my closest (?) friends haven't asked too much.  In a way, I wish they would.  I know they've noticed her puffy face, weight gain, but I feel they are waiting for me to bring it up to them.  I just can't.  But if they did ask, I would totally break down like I did to the pharmacy worker 

Like I said, I'm barely starting to come to terms with this all.  I have to be strong for her, but it's soooo hard!  Life has to go on....


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## my little penguin (Feb 24, 2013)

Welcome Ann!!!
Glad you found us...


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## Clash (Feb 24, 2013)

Marni's Mom, I hope that the new med is working fast and she if feeling alot better soon!!

Ann27, so glad you found us, it is a lot to come to terms with. Dusty posted a great read that really helped me in the beginning and I still go back to it from time to time, click here to read it. I hope your daughter is feeling her best soon!


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## Jmrogers4 (Feb 24, 2013)

Marni's Mom, I was right there with you sobbing in the school counselors office when I went in to tweak his 504 based on all the school he has missed this semester and found out he hadn't been drinking his EN at school.  I lost it, here we are trying to do everything to make him feel better and he wasn't following along and had been lying to me for 2 weeks. I apologized all week for losing it.


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## CarolinAlaska (Feb 24, 2013)

I'm sick today and I'm pretty sure it is 90% stress over the fact that the EEN isn't working so far like I was hoping.  I was stressing to the point of voimiting my guts out last night, and today I have diarrhea.  It doesn't feel like the flu.  My right side is hurting again too.


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## Marni's mom (Feb 24, 2013)

Hi Ann, Welcome to "the club".  I have found this thread to be very valuable in connecting with other parents on a level that doesn't discuss specific therapies or symptoms for their kids, but rather a place where we can support each other emotionally.  There a lot of threads in this forum that are about the medical aspects of CD, but I wanted to start one where we could blow off steam and "confess" when we're feeling weak and tired.

Jmrogers, I totally know how you felt when you found out your son wasn't taking his EN.  Our kids don't get to control many things relating to their illness, so when the find something they can try to control, the do it, even when it's to their detriment.  There are times when I want to strangle Marni for refusing to do her part.  I try to explain to her that when she's feeling bad, it doesn't just affect her.  It affects everyone else in the family from not being able to go somewhere her sister wants to go, to me not sleeping for nights on end and being very stressed out while trying to hold together the household and my dental practice (neither of which I feel like I'm doing a good job of, by the way).  They can be very selfish and not realize that impact on everyone else when they refuse to take their EN, meds, or whatever else they're supposed to be doing.  

I'm posting a series of 8 links below.  I thought some of you might be interested in seeing how our local ABC affilate brought awareness about IBD thought two half-hour programs done in 2011 and 2012 leading up to our local CCFA fundraising gala.  
By chance, the producer of the shows met Marni at Camp Oasis summer of 2011 and fell in love with her.  So, they featured her in the program and then followed up the next year.  

Keep in mind that there was editing done which included cutting and pasting together parts of interviews to stress some facts that, to those of us who know, won't sound completely accurate.  

I might post these links to a separate thread of its own, too.
Each program is only 30 minutes long, so really each segment is only about 5 minutes.  I hope these links work from here.  If not, I'll figure it out.

Stacey

"You Are Not Alone"
Segment 1     http://abclocal.go.com/ktrk/video?id=8439986
Segment 2     http://abclocal.go.com/ktrk/video?id=8439989
Segment 3     http://abclocal.go.com/ktrk/video?id=8439990
Segment 4     http://abclocal.go.com/ktrk/video?id=8439991

"Breaking The Silence"
Segment 1     http://abclocal.go.com/ktrk/video?id=8882705
Segment 2     http://abclocal.go.com/ktrk/video?id=8882706
Segment 3     http://abclocal.go.com/ktrk/video?id=8882704
Segment 4     http://abclocal.go.com/ktrk/video?id=8882707


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## Kimberly27 (Feb 24, 2013)

@ Marni's family.  There is so much love...  Sweet. 

Kimberly


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## Hope345 (Feb 24, 2013)

Marnis mom, 

*thank you so much* for sharing the links to the videos.  Marni is adorable and so is your whole family.   My heart ached for you as I watched all that Marni has gone through.  she is a remarkable young girl.         

I think all of us moms/dads can relate to those videos.  I sent copies to some family members ...

yes, make sure you have tissue...


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## CarolinAlaska (Feb 24, 2013)

Those videos are awesome.  Thanks for posting them.  Of course I cried through out them all.  My dd watched over my shoulder, but hasn't commented yet.


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## Jmrogers4 (Feb 24, 2013)

Thank you for sharing! Marni is adorable and very well spoken.  Love the "Mom, here is my fish" and she wouldn't touch it.


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## Devynnsmom (Feb 24, 2013)

Marni's mom thank you for sharing.


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## Marni's mom (Feb 25, 2013)

Just got out of my bedroom where I've been laying with Marni for two hours trying to help her push through her pain and go to sleep.  She seemed to have a better weekend, but then tonight the pain was bad again.  While we laid in bed together, I checked my email from my cell phone and saw the alerts that there were comments on the thread after I'd posted the links to the videos.  I read them to Marni there in the dark...all those nice things people who don't know her had to say about her.  She liked it.

I have to tell you that yes, I do think my child is remarkable and brave and all the things that were said, but so are ALL of YOUR children, too.  They ALL endure similar experiences in the overall picture.  They all face unimaginable pain, unending diarrhea, bleeding, lack of growth, icky formula as their main source of nutrition, etc, in different combinations and degrees. They are ALL brave and remarkable.  The only thing that makes Marni a little different is that she was lucky enough to have been given a chance to be a spokeschild for Crohn's and help get the word out so d*&#_@ss people will stop saying things like, "If your son cuts out spicy food, he'll be okay."

I wanted to give hugs and support to those of you who have written that you are single parents trying to work and take care of not only your sick child, but others, too.  YOU are remarkable.  

I know how hard it must be because my husband, Jeff, works in Dallas.  He started that job only three days after Marni went into the hospital for the colonoscopy that ended up with the perforation that required surgery to repair that triggered all the post-op complications that kept her in the hospital for three weeks.  He didn't want to go, and his new employer was nice enough to tell him he could postpone starting the job, but I made him go because we needed the income since I was going to have to take time off from my practice to be with her in the hospital.  

That was two and a half years ago and he still works in Dallas.  He comes home on Friday night and drives back up on Sunday night every week.  It's a four hour drive each way.  He's gone all week, every week.  I'm lucky enough to have my mother living only two miles from my house, and she helps me immensley.  She's like a third parent to both of my kids.  So, when I'm feeling stressed out and like I'm doing this alone, I feel ashamed for feeling that way.  My husband comes home every weekend and during the week I have my mom helping.....and I know how hard it is like that.  But to think that some of you have NO help makes feel awful for complaining.  And then to be taking care of a child with Crohn's AND have it yourself....that's mindblowing.  I admire you all for your strength and tenacity.


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## QueenGothel (Feb 25, 2013)

I just watched all the videos.  You must be so proud of her. I think it is great that she talks about it.  Rowan doesn't talk about it.  I wish they let younger kids go to Oasis.  I recently did a interview with Michigan Alumni magazine whilst we were at the hospital. It is so important to raise awareness!  Great job!  :medal1:


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## Jmrogers4 (Feb 25, 2013)

Jack was the honored hero at last years walk here, he did a good job but I don't think he was as near as eloquent as Marni.  Here is the youtube link if anybody wants to watch him  http://www.youtube.com/watch?v=NmzJJyVBiwk


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## Marni's mom (Feb 25, 2013)

What a handsome young man!  We haven't done the Take Steps.  I should know how it all works, but I don't.  We have a big one here in Houston each year.  Can you tell me what's involved?

Queen, if you are the queen, does that mean Rowan is Prince Poopalot?   
That's what we call Marni when she's on her throne, lol.


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## Jmrogers4 (Feb 25, 2013)

I'm sure it is much bigger then the one here but he signs up on line as team captain and invites people to come walk with him and of course asks for donations, I figure some of that money goes toward Camp Oasis which he has benefited greatly from so I'm willing to support it. Nobody has to make a donation in order to walk and he has had quite a few of his friends come and just walk with him and support him.  There are generally games/activities for kids prior to the walk and the walk is about 2 miles (although if you are Jack you add another mile because you pass the bridge you are supposed to walk back over and go to the next one).  
Think I will have to steal the Prince Poopalot   I guess dad would have to be King since he has Crohn's as well.  Can I be Queen of Insanity then?


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## Hope345 (Feb 25, 2013)

Jack is  handsome young man and  a great inspiration!!!  Go Jack.
thanks for sharing.    Hugs and well wishes to him in his journey through life


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## QueenGothel (Feb 25, 2013)

Marni, she does poopalot! She prefers princess Ropunzel though.  No jokes about her princess status are allowed for she is a full on princess through and through. Other jokes are allowed though.

What do you call a fairy that has IBD? Stinkerbell!


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## Marni's mom (Feb 25, 2013)

I'm so sorry, Queen, I didn't realize that Rowan was a girl.  So, yes, IF she would allow it, she would be Princess Poopalot.  But apparently that's off the table! LOL

And Queen of Insanity, I feel like a subject in your kingdom, however, and would kiss your ring if I was to be invited into your court.  I am definitely teetering on the edge of insanity.

Would you bonk me on the head with your sceptre?


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## Niks (Feb 25, 2013)

Amazing clips of Marni and Jack!!  Both such brave kids xx


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## Kimberly27 (Feb 25, 2013)

Good job, Jack!  

Kimberly


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## CarolinAlaska (Feb 26, 2013)

Stars and Smileys all around!


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## Marni's mom (Mar 1, 2013)

Oh man!  I think I'm going to lose it.  I do not think I'm doing a very good job of coping at all right now.  So, I'm here to vent, if you all don't mind, and to reach out to those of you who understand for some clarity.  

Marni hasn't been to school in three weeks.  While she hasn't ever had a pain-free day since she got sick over five years ago, I think aside from when she first got sick, this has been the longest period of time that she has endured constant and severe pain to this extent.  

We were in the hospital two weeks ago for two nights for an MRI, and she was discharged with the plan of steroid enemas and staying on her EN 24/7 rather than overnights only.

We may need more time to see if the steroid foam is going to work to get the current area of inflammation under control.  But in the meantime I can't stand watching her in such constant pain day after day, and all those hours in the bathroom, too!  We've decided to put her back in the hospital, which she absolutely hates, for the following reasons: they'll be able to monitor and help manage her pain;  we'll do the camera pill again (did that a year ago without any findings); we'll do another endoscopy; another colonoscopy; we'll have a consultation with pain management docs and possibly psych; and we'll have a consult with the surgeons to determine if there is anything they can or want to do with what is found in the first part of this list.

Marni has done all of the above many times with very little to show for it.  There have been findings along the way, but never badly inflammed or ulcerated  areas that could be visualized.  I always felt like the visual evidence never really supported the level of pain she has had all these years, although her labs have explained it.  That's why I've grown weary and wary anytime there is talk of more upper GIs, MRIs, endoscopes, colonocospies, ect.  I get all hopeful that THIS TIME something will show up so we'll know what we can do to fix it, and then we are told that it looked "pretty good". The last MRI showed more than I think they've ever been able to see on any test, so maybe this time something WILL show up, but who knows.

I'm feeling very depressed, crying at the slightest thing, and very anxious about watching her be in this constant pain, about all the school she has missed at once this time, about how much she hates being in the hospital and how upset it makes her, and about when this will end.  It keeps me from sleeping (and her), and that of course makes it hard to function fully at work the next day. Pain meds at doses meant for very large adults don't last very long when they do work, but mostly they don't.

(It's almost 2:30am, and she just got up to go to the bathroom again as I'm writing this)

How do you all cope when your kids are in flares, or it just keeps piling on with no end in sight?  This affects me, which then affects my other daugther and my mother who helps me take care of my kids because my husband works out of town and is only home on weekends.  I'm sure it affects him too, but not to the extent it does us, because he just isn't around to see it with his own eyes on a daily basis.  

The last time I felt this way, I went on anti-anxiety meds to help me through the worst of it. I took them for about three weeks, and they helped.  I haven't taken them this time, but i suppose I should.  

What do you all do when you feel this way?

(She just came back from the bathroom.  She's moaning and whimpering and looks sad and exhausted.  She needs more pain meds again. Gotta go.)


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## upsetmom (Mar 1, 2013)

:hug:..I'm sorry your finding it hard to cope. It's not easy having a sick child.
You might need to go back on the anxiety meds for awhile.
I find the best thing is a good cry...Please take care and remember we're always here for you.


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## Hope345 (Mar 1, 2013)

I am so sorry to hear about Marni.  I know your heart just aches.
One thing you dont have to worry about is school.  I was the same way, but even the principal kept telling me, its just middle school.  I am going to tell you, its just elementary school and she is going to make that up just fine.  You can get a lot done when she is feeling well again. 

You take whatever you need to help.  We do understand!!  Looking back, I wish I would have taken something.  IF you want something more natural you can try St. Johns Wort and Camomile tea.  
sending lots of hugs to both of you and grandma too.


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## Marni's mom (Mar 1, 2013)

Thanks upsemom and julie.  I posted that at 3:30am.  She never did sleep. In the bathroom all night.  An hour or to on, five minut, then two hours on, five minutes off. I finally dozed off at about 6am and was awakened at 7 by her calling me for help to get off the toilet because she was so weak. She fell asleeo until 8:30 and just ran back to the bathroom.  I'm so tired that I have a dull headache.  I would try to take a nap before I go to work. But I feel guilty sleeping when she's alone in the bathroom. I'm taking her to the hospital this afternoon.  No one gets any sleep there.  !!!!!!


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## Devynnsmom (Mar 1, 2013)

(((((hugs))))) Im so so sorry she's in so much pain and feeling so awful  The worst feeling in the world is watching your child suffer and not being able to do a thing to help them. I hope you guys get some answers soon.


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## Brian'sMom (Mar 1, 2013)

Marni's Mom, Just a guess, but if she's in the bathroom that often could the pain meds not even be absorbing? Can you crush them? I'm so sorry you're going thru this. When you don't sleep the anxiety becomes a beast! I also worried about school during Brian's worst flare. He missed over a month all at once. Our school worked with me to do his work at home. That relieved some stress for me and my son. But if your daughter is feeling so horrible...then just put the school worry aside. She'll catch up sooo quickly when she's feeling better. What meds does your doctor have planned for you guys? (If it was posted, sorry I can't remember)


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## Jmrogers4 (Mar 1, 2013)

Yes, school is the last thing to worry about although I know that is hard because all these thing just keep running through your mind.  Hospital is probably the best place for her right now and she will get constant monitoring.
It is so hard when the tests do not reflect what your are seeing, but obviously there are things going on especially if she is getting up all night and spending it in the bathroom.
Keep us posted, try and get some rest (I know better said than done).
Once you get Marni through this maybe plan some special time with your other daughter but for now just acknowledge that you understand this is difficult for her as well.
We are here thinking and praying for you and sending lots of ((Hugs)) and just think of us all standing right behind you supporting you.


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## CarolinAlaska (Mar 1, 2013)

I'd be right like you - a basketcase.  My daughter isn't even that sick and it is hard on all of us.  I use Serenity and other essential oils to help me sleep and be able to function, and I come here or try to do other enjoyable things.  When things improve, then so do I.  I feel for you going back to the hospital.  I hate it there.  It will help by getting all those tests done in a timely manner, though and will allow others around you to see that they need to kick into their support Marni and Stacy mode .  I hope she starts feeling better soon and that the tests show everyone what is going on so that it can be fixed. <<<Hugs>>>


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## Niks (Mar 1, 2013)

Marni's Mom, you poor thing!

Think you should take what ever you need to get you by and be strong for your girls.  

I really hope she feels better soon.

:ghug:


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## Marni's mom (Mar 2, 2013)

Thanks everyone, for the encouraging words.  We're at the hospital now, and she is on Morphine.   She's actually laying quietly in bed, ready to finally get some sleep.  We have plans for tests, scopes, etc in the coming days, but right now, the focus is on pain control.  I already feel more peaceful because she does.

Our doctor even told the nurses to NOT come in at all during the night to take vitals or give meds.  It's all about rest right now.   

Kathy, I do actually crush her pain meds at home and mix them with a little water and give it to her via her mickey button.  Usually, she feels better within about 15 minutes and gets sleepy, and sleeps so deeply that I can't wake her up in the morning.  The past couple of nights, the med (Tylenol #3) hasn't even touched the pain.  The feeling of having to go to the bathroom all the time is because the most distal part of her colon (rectum) is so inflammed.  The inflammation is making her rectum think there's stuff in there that needs to be pushed out.  So, she runs to the bathroom.   And, of course, that feeling doesn't go away even if she does go some because the inflammation hasn't gone away.  The steroid enemas are supposed to help with that, and she will be getting them three times a day while here starting tomorrow morning.  Tonight...she just rests.  Oh, look!  She's asleep.  So that's what that looks like.  Aaaah.

Thanks again for the hugs and support.  You are all awesome.


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## DustyKat (Mar 2, 2013)

Hey Marni's mom...:hug:...you know yourself better than anyone so do whatever you need to get through this hun. :heart: 

Having been through the acute times and the remissions I think I have realised I no longer stress the small anymore and instead my priorities have shifted. In many ways I have found coping just as difficult in the good times as the bad. When my children were ill I found I was actually able to focus better as the fears and worries were tangible but when they achieved remission I started to fear at how fleeting the good times may actually be and that was harder to deal with because I was battling my own demons. However the plus side of remission is that it buys you breathing space and with breathing space comes time and that in turn leaves you realising that you haven't thought about Crohn's for a few minutes and then a few hours and then half a day and then almost a full day! I can't say I ever go a whole day without thinking of it because I know I won't and I don't think that will change for the rest of my life but that is okay.  

I hear you all and your fears and worries...:ghug: Thinking back on how I coped I know I dealt with it in two very different ways. Firstly I threw myself into researching everything I could about Crohn's and more specifically the aspects of the disease that affected my children and secondly there was the wind down. To do that I came here to the forum and spent a fair bit of time posting in the members section where there was plenty of chat and laughs. The other wind down was rediscovering what I found relaxing, it's not hard to lose that when you start a family! For me it was and still is my iPod. In my mind there is nothing better than putting those earphones in, blocking out the world and listening to your favourite artists...pure bliss!  I know it can be hard to achieve these things at times but sometimes just knowing they are there can be a comfort.

Living this disease day in and out when our kids are flaring is a bloody hard slog. If there are any words of advice and comfort I can give it would be to take each day as it comes, there will be good days and bad days for our kids and good days and bad days for us. Above all else be kind to yourselves, we are only human and as far as I am concerned there is nothing harder in this world than watching your child suffer and knowing you can't take it away. Not to mention the heartbreaking decisions we have to make on their behalf. 

So here's to all of you and the wonderful job you are doing. Well done! :cheerss:

Dusty. :heart:


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## Hope345 (Mar 2, 2013)

So glad to hear Marni is resting.  Hope mama can sleep a little bit too.


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## Farmwife (Mar 2, 2013)

Sleep can only be truly appreciated by parents of the chronically ill.

Hugs to you. Your doing a great job.

Update when you can.


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## Devynnsmom (Mar 2, 2013)

I'm so glad she's resting comfortably. I hope you can get a few hours of good sleep too. (((((hugs))))))


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## Crohn's Mom (Mar 2, 2013)

Hugs Marni !

I'm happy to hear she is resting finally.
I hope you've taken it upon yourself to rest when she does :hug:


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## CarolinAlaska (Mar 2, 2013)

Peaceful dreams to both of you.  I hope the hospital staff will respect that need for your rest and recuperation (both of you!)  Is there a bed in the room for you too?  Hugs!


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## Twiggy930 (Mar 2, 2013)

So sorry to hear that Marni is in so much pain.  It is such a hard and devastating thing to watch your child in pain and not be able to make it stop.  I understand the desire to have the tests find something tangible.  My son had chronic pain for many months which was not supported by test results.  All I wanted was for them to find something that they could fix.  I hope that they are able to help her at the hospital and that you both get some relief.  

As for school my advice would be to not worry about it.  My son missed well over 50% of his grade 5 year.  I worried myself silly over it.  Now that he is more stable I can see that my worries about school were silly as it is just school and it can be stopped and started as needed and the far more important thing is getting our kids better.  However, I think school, and not going to school, became my daily reminder that things weren't good.  I was desperate for my son to be able to go to school.  But looking back I think that desperation was not so much about missed school work as it was a desire to see my son better and subconsciously I was using his ability to go to school as my benchmark for that.  From what I have seen on the videos you have posted you have a very bright and vibrant daughter.  When she is feeling better she will catch up in no time.  

:ghug:  Hang in there and get some rest when you can.


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## Mehita (Mar 2, 2013)

I agree with everyone else re: school. Do not worry about it. Even in 7th grade, my son's teachers would send him emails telling him to take care of himself first and not think about school. He was exempted from many assignments except the ones required by the state in order to move on to 8th grade. The only thing we did do was pick up homework from teachers simply because it was a boredom buster while in the hospital.

Does your daughter have a 504 plan in place? If not, that is something you will want to do when things settle down. I think quite a few off us here have them for our kids if you need help or advice.

I hope you're doing ok and getting some answers... and sleep! Remember when they were babies and we were always told to "sleep when they sleep"? Great advice for times like this as well.


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## Sascot (Mar 3, 2013)

So sorry to hear about your poor girl! And you trying to cope!  I hope they manage to get somewhere with this hospital stay.
Just wondering (might be completely wrong) but have they ever done a laparoscopy - gone in through the belly button with the camera to see if there is anything showing on the outside of the intestines, etc.  It's just with the level of pain she is experiencing, you would think there would be a little more to show for it - although maybe there will be this time.  Maybe she has some ulcers/irritation on the outside that isn't being touched by the enema.
Good luck!! Hope they get to the bottom of all this.


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## AZMOM (Mar 3, 2013)

You all have been through it!  Lack of sleep when thing are terrific (when was that again?  ) is trying much less with what you all have going on.  

I hope that sweet girl and her momma can get some relief!!!!!!

J.


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## Dutch941 (Mar 3, 2013)

Man, can I relate to all your comments.    When Matt is even slightly uncomfortable, sleep is not a possibility for me.   The stress?  Immense.  I have to be honest, I dont know how some of you do it.  I feel like I am barely managing sometimes and not to minimize but Matts concerns seem so minor compared to what some of your children go through.  I find myself feeling sick to my stomach that he's UC, but so thankful that, for now, it isn't Crohns. 
  It's helpful to know that we're all not alone...and despite the fact that it seems that 99 % of you are moms..I feel right at home here as a Dad.  Thanks for welcoming me last year. Keep your heads up!


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## Brian'sMom (Mar 3, 2013)

Don (Dutch),
It's nice to see Dad's on here too. Hearing a Dad's perspective is helpful


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## upsetmom (Mar 4, 2013)

Hi just checking to see how you and Marni are....:hug:


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## Marni's mom (Mar 4, 2013)

You are all SO amazing!  I can't tell you how much I appreciate everyone checking in on me.  Wow.  And you all have so many good suggestions and questions.  

I think I'm going to start a new thread just to update on Marni right now, because I don't want to hijack this thread for Marni's status, but rather keep it for us to talk about own coping issues.  I have found this thread to be a great comfort.  

Thank you everyone.


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## Kimberly27 (Mar 4, 2013)

As a sixth grade teacher, I agree- don't worry about the school work.  

Are you taking anything at night to help you sleep?  Even something over the counter might help.  I take Trazadone at night.  It's a mild anti-depressant with the side effect of drowsiness.  I feel less drugged on Trazadone than Tylenol PM.  Also, I don't mind feeling a little happier falling asleep.  I do think the first hour of sleep is very deep, so I don't know if you'd feel comfortable with that.  If you need to be up during that first hour, it might be too difficult.

Hugs!

Kimberly


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## Gingermom (Mar 4, 2013)

All of your stories are so familiar! I am beyond exhausted, can't stay asleep and when i do have the weirdest dreams, ugh. My son is 12 and has Crohns and EGE, we can't find a solution to make him feel better and it's so frustrating! I'm on the internet all the time, or in the kitchen cooking food he can hopefully eat, trying to find a holistic way to heal him. He's on pentasa now and it's not working, and neither is diet. I just want to cry and scream. I just want to hear the words "i feel good today mom" and I don't. I have my sister and some freinds who ask and care so I'm lucky but I'm truly shocked at the people who I thought were friends that don't ask. WTH? It makes me mad. DS is now home schooled and it's like no one noticed he's gone. GRRR. Thanks for listening and being there time and time again! I feel better


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## Gingermom (Mar 4, 2013)

I'm so happy you said don't' worry about school because that is another thing. I put DS on K12 and I thought it would help but I swear it's worse!! There is way more work than regular school! And he is too sick to do school on many days. I think we need to switch. Plus I'm in school and work f/t. Any suggestions on online school?


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## my little penguin (Mar 4, 2013)

Gingermom
Has he ever been seen by cchmc, chop, or Bch ?
Is there a reason he is only on pentasa ? That is a very mild med which does typically not induce remission in CD patients.
Most kids need an immunosuppresant such as 6-mp or Imuran .
Hugs


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## Gingermom (Mar 4, 2013)

I really wanted to try using the diet to put him into remission and the doc is on board but i don't think it's working   I really didn't want him on 6-mp but that's next step because he just has to feel better. Have not been to cchmc, chop or bch. I took him to Stanford before putting him on the diet. But I think I have to put him on the 6-mp.
Hugs back


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## my little penguin (Mar 4, 2013)

One thing to keep in mind 6-mp takes at least 4 months sometimes 6 months before you can see results .
Typically you would know if pentasa was working after a month.
Most Gi will meat giving pentasa for crohn's is like taking aspirin for a brain tumor .
Not going to hurt but most likely not going to help alot either.
Do not be surprised if he needs pred again while waiting for the 6-mp to take over this is pretty standard . One other option to ask about trying EEN ( formula only ) with an elemental ( neocate or elecare) until the 6-mp takes over .
EEN is used to treat egid and Ibd .

It's never easy


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## Brian'sMom (Mar 4, 2013)

Gingermom, When my son first showed signs and we were told it was crohns I fought that DX with everything in me. I tried all kinds of diets. He was only 6 at the time. I put him on a gluten free diet and he seemed to get better. He had 'logs' (I thought that meant better!). He seemed to be cured and my husband and I celebrated that. We didn't return to the GI and they never called (of course). I'm embarrassed about this now. He didn't grow much. And then the Diarrhea returned at age 10. We are SO LUCKY he didn't have any serious damage. (Strictures)
I guess my point is...I don't think diet alone cures this beast of a disease. I OFTEN wonder how big he'd be if I had listened to the doctors when he was 6. He obviously wasn't absorbing nutrients. And would his disease be this advanced if we had had it under control all those years? 
I'm not preaching...just want to help if I can. I also know every case of crohn's is individual and I can only speak about my experience.


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## Dutch941 (Mar 4, 2013)

My two cents:
I agree with MLP about the Pentesa...we have been advised by our GI who I find to be very knowledgeable and trustworthy...that Pentesa is NOT enough medication for Crohns.   Also, he explained that when IBD presents in a child it is generally a much more severe version than when it presents at adulthood.    He is very skeptical of controlling the issue with diet and denies having seen any children patients where this has been successful.
  We used 6 mp for a period of time for my sons UC....that seemed very effective and he suffered no uncomfortable side effects...unfortunately it did affect his liver...this effect was easily detected in his Bloodwork and we had to stop using it...the liver enzymes returned to normal and we are told this causes no long term damage.    If you use 6mp you can also do testing that will show how your child is processing the 6mp and will reveal its effectiveness and the potential likelihood of antagonistic side effects.
You should also research LDN as a possible option, however, LDN, is alleged to be slow working as well......


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## Jmrogers4 (Mar 4, 2013)

Took us about 12 weeks for LDN to really work well.


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## Dutch941 (Mar 4, 2013)

I should add that our son was  12 at diagnosis and our biggest concern other than his immediate health was preventing any delay in his development...puberty, growth, etc.....
We hated the idea of 6mp but we also didn't want to goof around and lose any more ground than we already had in the year leading up to diagnosis.....we ultimately gave in to 6mp with the belief that we were picking the lesser of two evils.


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## Gingermom (Mar 6, 2013)

Thanks everyone! The plan is one more week on the diet then adding in 6-MP. Will he still need the Pentasa? Doc says yes but wondering how you all feel about it.

I started crying at the doc office yesterday when we made this plan. I must have felt a big load off my shoulders...wish i didn't cry right then but it happened and it's ok.


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## Jmrogers4 (Mar 6, 2013)

Wouldn't hurt to keep on Pentasa for the time being - 6MP takes a while to work and Pentasa can help with surface inflammation.  IMHO I'd continue it for the next couple of months and then decide.


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## Dutch941 (Mar 6, 2013)

Yes..continue the pentasa...it's quite mild when compared to other medications...the pentasa works simply by releasing within the colon and coating the interior inflammation...we used both and when the 6 mp failed we simply continued with pentasa.  Aside from unique circumstances I believe pentasa is unlikely to cause any harm....


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## Dutch941 (Mar 6, 2013)

Ginger....I see your dealing with Crohns so I want to repeat that my son who has seen good things with pentasa is suffering from only UC....I believe pentasa has not had much success with Crohns.....I'm assuming this is because it releases when it gets to a certain PH and likely only helps the colon....that's my understanding at least, so I would assume the pentasa would only help you if your dealing with inflammation within the colon....


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## my little penguin (Mar 6, 2013)

Pentasa coats but releases higher up in the Gi track.
Asacol different ph does colon only.


> Both Pentasa and Asacol are prescription forms of mesalamine. The difference between Asacol and Pentasa is in the outer chemical coating. Oral Pentasa has a unique formulation. The active ingredient is contained in coated microgranules, which enables a prolonged release of the active substance throughout the intestinal tract, from duodenum to the rectum. Therefore the Pentasa preparation is more useful for Crohn's patients who often have inflammation of the small intestine. The average small bowel transit time is approximately 3-4 hours in healthy volunteers.
> 
> Asacol is a delayed release enteric-coated tablets which generally releases the active ingredient only in the colon. While there are always clinical exceptions, Asacol is generally suitable for patients with colitis only (ulcerative colitis or Crohn's colitis), but not disease involving the small intestine.


From
http://www.gihealth.com/html/education/drugs/pentasa.html


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## Dutch941 (Mar 6, 2013)

That's interesting...I wonder why we weren't prescribed asacol?   Since his inflammation was all in the large intestine.   I'll ask tomorrow.  Thanks MLP


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## my little penguin (Mar 6, 2013)

Dutch

it may be an insurance thing???
Ds was on both but once the second scope showed rectal inflammation GI switched to asacol in addition to other maintenance meds.


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## Sascot (Mar 7, 2013)

Gingermom - I have been where you are!  I put off the 6mp as long as possible as my son wasn't having many symptoms.  We are now on week 4 and so far no side effects apart from a bit of tiredness.


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## Johnnysmom (Mar 21, 2013)

This is how I feel right now-

www.youtube.com/watch?v=zulKcYltKIA-Tenth Avenue North-Worn
Just worn..

If the link doesn't work, you may have to type in the address.  Sorry


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## Hope345 (Mar 21, 2013)

Johnys mom,
thank you.  I found a link that works   http://www.youtube.com/watch?v=-METBrlP3xU

I hope Johnny gets feeling better....
prayers for you and your son
julie


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## Farmwife (Mar 21, 2013)

Johnnysmom
That was a beautiful song
I hope your burdens gets lifted soon.

HUGS:ghug:


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## positivemum (Mar 21, 2013)

I am so glad I found this forum. It is 2 years since my son(m=now 14) was diagnosed and it was a huge shock. I only found this forum a few weeks ago and it is such a help. My son was diagnosed as I career changed and was training to be a primary school teacher so time off was not an option. I managed to qualify, did my NQT year and am now in the next year from that teaching 10-11 year olds full time. My parents are amazing! My job helps me keep some normality and we have had some tough times but talking about it and crying about it together has helped. I have a close relationship with my son as he is our only one. His ability to cope has made us cope even in the really really tough times. I don't get any me time so I could do with less wine and more exercise etc but hey ho that's life!

We are in the Uk and going to Florida in May for our 2nd family trip. The first was the year before he was diagnosed. this time we will do it all at his pace and enjoy the good times. We try to be positive but honest and are now in acceptance mode. It is all so hard and none of our kids deserve this. Wishing you all well x


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## Johnnysmom (Mar 21, 2013)

Johnny is actually doing pretty well.  They are checking his fecal cal next month and if it is still high we will know the 6mp isn't quite doing it's job.  But otherwise he is feeling well.

Now my daughter Brooke is showing signs of crohn's.  She had a staph infection in her mouth and the Dr. found healed ulcers.  Thinking about having my other child having this disease is just so depressing.  Most of the time I can be up beat and count my blessings but lately I am just weary.  The thought of dealing with this disease over an entire lifetime with all the endless possibilities will drive you mad.  I try not to go there.  But lately I have been living there.  It helps just to talk about it, and to have all of you.:heart:


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## Marni's mom (Apr 1, 2013)

Okay, I admit it.  I'm NOT coping right now.  I'm worn thin and feel like I'm almost at my limit.  I feel anxious and depressed because I can't do much other than watch my child suffer in pain and feel like I'm failing her for not being able to make it stop hurting and failing my older child because she feels neglected, failing at my profession, letting my house fall apart, etc.  Feeling sorry for my baby, who is always hurting. And, I'm embarrassed to say, but I'm feeling sorry for myself tonight.  I thought venting would help.  It didn't.  Anyone else feel this way?


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## Farmwife (Apr 1, 2013)

YES! I did the first two years of her life. Night after night of crying and being in pain. Day after day of having people say she'll grow out of it. Now I live with the guilt of knowing I should have pushed harder.
 I know Marni is a different case than most (sorry) but your coping the best you can, even when you feel like your not. Hang in there mom, we're here for ya. Pm anytime. HUGS


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## izzi'smom (Apr 1, 2013)

Been there, hon...it's a tough road, for sure, but hang in there, mama!!! I spent many a night in front of my PC sobbing, for Izz AND for me, depending on the night. Therapy, wine, working out...it all helps. It's so hard when they aren't doing well to be positive and strong. (((HUGS))). I'll be thinking of you today :heart:


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## Devynnsmom (Apr 1, 2013)

(((((hugs)))))) Marnismom. We are here any time you need to vent. I know the feeling. I have felt that way plenty of times with Devynn. When she was diagnosed, I felt incredibly guilty for NOT pushing harder. Her symptoms started when she was approx 18 mos and she wasn't diagnosed until she was 8. I'm so sorry Marni is feeling bad  Its the most awful feeling. I used to wish and pray that whatever was wrong with her, I could take it and make her better. (((((hugs)))))) hang in there mama.


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## QueenGothel (Apr 1, 2013)

Fears we cannot climb become our walls. You are in full on survival mode.  This mode happens to me as well... You put on your poker face taking her to the hospital, remained strong through all the poking and prodding, comforted her when the pain was unbearable.  You are not failing her, you are probably very tired.  When I come home from a big hospital stay, my house is a mess and for days maybe weeks I am not a mother but a nurse just doing her job.  It happens.  People tell me all the time at that I am a great mother and how strong I am. We do what we do because it needs to be done, we love our kids and we want them to be their best.  Unfortunately sometimes we fall on the trail and forget how to dust ourselves off and this is where you are I think. These moments are when I pray the most.  I don't pray because it makes sense to do so, I pray because my life doesn't make sense most of the time. Take care!  You are not alone!


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## Niks (Apr 1, 2013)

Marni's Mom

I think we've all been there, use your friends, family, anyone who will listen!  You need to be able to take some time for yourself, even if it is a hot bubble bath with a large glass of wine.

Sending you big ((((HUGS))))

Chin up hunny, stay strong xx


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## Twiggy930 (Apr 1, 2013)

YES, I have definitely felt this way.  There is nothing worse than seeing your child in pain and having no clear way to make it better.  I get a sinking feeling just thinking back to that time.  Nothing I did helped tremendously but an occasional run with a friend (really an excuse to go out for coffee/breakfast) and trashy tv or books were my go to activities when things were really bad.  For a long while I felt like my mood was entirely dependant on how my son was feeling.  If he was feeling good I was ELATED and if he was feeling bad I was DEPRESSED, the swings between the two where frequent.  

:hang: you are doing the best you can!


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## Mehita (Apr 1, 2013)

Lately I feel like I'm just obsessing over Crohn's. My son is doing really well right now and seems to be in a pretty good state of remission. Yet... I can't stop thinking and planning for the next flare. Am I crazy??


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## my little penguin (Apr 1, 2013)

Nope not crazy
Same here every time I think I can relax
Bammmm
He cycles through something again
No one can explain it
Take some time for your self and older child even if its a hour this week
Ask friend family to clean or grocery shop
Just to give you the break 
It's hard to ASk for help
But you need it


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## Sascot (Apr 1, 2013)

Just wanted to send a hug. Been there! It is so difficult to watch kids in pain! Went through that for both - suppose they both got extra attention at some point last year. Just give your other kiddie lots of hugs whenever you can. They will understand. Housework always comes low on my list when kids sick. So long as my bathrooms and kitchen are disinfected/clean I am happy enough


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## DustyKat (Apr 1, 2013)

Mehita said:


> Lately I feel like I'm just obsessing over Crohn's. My son is doing really well right now and seems to be in a pretty good state of remission. Yet... I can't stop thinking and planning for the next flare. Am I crazy??


If you are then I am too! :lol: 

Have a read of my and T's posts on the first page of this thread: 

http://www.crohnsforum.com/showthread.php?t=22520

Dusty. :ghug:


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## jmckinley (Apr 1, 2013)

Not strange at all Mehita! Ryan is also at a pretty good state, yet I seem to stay on pins and needles waiting like "this won't last"!It's hard to live your life and allow Crohn's to be an occasional visitor and not take up residence in your head! Hugs to everyone!!


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## RunningDownIBD (Apr 2, 2013)

One day at a time is sometimes too long...it is one hour or one minute.  <3  I finally learned to give myself time to throw a pitty party, cry, yell, hit things (i actually have a punching bag), sulk...whatever it takes. I just set a limit on it.  Today or this weekend.  I've helped my son do this too and it seems to have helped a little with his anger, too.  The fact is we are human and sometimes life sucks.  I say this as someone who has incredible faith and it is usually after an hour or two of full out feeling sorry for myself that my faith comes through strongest.  The truth is that we DO have reasons to hurt and be afraid and worried.  I don't know if there is anything worse than seeing a child suffer.  We aren't stone.  WE have feelings and if we keep them in and always act invincible most of us will eventually completely come apart.  If we can let ourselves be human a little more often, its seems the crash isn't as bad.  My Dylan has had such a frustrating year, but is finally seeing some light.  I have, unfortunately also been in a nasty flare.  We learned that there are very few balls that actually have to stay in the air; most can bounce and will be there for you to pick up later...or they just aren't important.  We are still living day to day, but my heart is more at peace when I let myself have my emotions.  I'm very blessed to be a glass half full person at heart, so I understand that it is a gift, but generally if I give my negativity and heartache and sadness its time, I can get back to being me.  I keep all of you firmly in my prayers.  All my best today and every day.:ghug:


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## CarolinAlaska (Apr 4, 2013)

Hugs to all who aren't sleeping for the thoughts that are constantly churning trying to figure out how to make your child better, to avoid the upcoming tests/meds/other unhappy scenario...  Take some time to just be a family some day.  Don't be afraid to take time off for things other than Crohn's related problems.  This is important too.  Go on a field trip with another child's class.  Go out with friends or your family and see a movie.  Take a date with your spouse and eat spicy, greasy foods!  You need to take care of you too!  Oh and one more thing.  Set at least one day aside to not log onto this board.  When you have some down time, it's okay to make it a nonIBD evening or moment too.


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