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Crohn's Disease Forum » Parents of Kids with IBD » How are the parents of kids with IBD coping?


 
02-11-2013, 02:19 AM   #1
Marni's mom
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How are the parents of kids with IBD coping?

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.
02-11-2013, 02:37 AM   #2
CarolinAlaska
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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...
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Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
02-11-2013, 02:45 AM   #3
Niks
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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.

02-11-2013, 03:01 AM   #4
Ams-Qld
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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
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Son with Crohn's, Dx at age 10 - 4 years ago. Anaemia of chronic disease (first iron infusion Dec 2013) Peri-anal abscesses (Aug 2012) that formed fistulae (early 2013). Began 8 weeks of EEN in Dec 2013 via ng tube.
Current Meds: Imuran (25mg) morning and night. Previous Meds: Pred, Flagyl, Cipro. Allopurinol.
Please take my thoughts and experiences as mine alone; I am not a medical professional and my humble opinions are not to be taken as advice! Blessings to you and yours!

Last edited by Ams-Qld; 02-11-2013 at 03:04 AM. Reason: spelling
02-11-2013, 09:07 AM   #5
QueenGothel
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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.
02-11-2013, 10:26 AM   #6
Crohn's Mom
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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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~T~
Mom to Gab (20)
DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
02-11-2013, 11:10 AM   #7
Sascot
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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!"
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 . 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.
02-11-2013, 11:17 AM   #8
Niks
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[QUOTE=Sascot;593060]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!"
QUOTE]

OMG!! Your best friend dumped you, because you were bringing HER down!!!



You are SOOOO much better off without her!
02-11-2013, 12:02 PM   #9
Tesscorm
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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 ).

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 - 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...

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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
02-11-2013, 12:04 PM   #10
Farmwife
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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.
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!
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine

Last edited by Farmwife; 02-11-2013 at 12:20 PM.
02-11-2013, 12:14 PM   #11
Tesscorm
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I also come for my 'balance', my yin and yang so to speak... from who else but Farmwife and Crohnsinct!!!

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

And, ALL in ONE thread!!!
02-11-2013, 12:17 PM   #12
Clash
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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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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
02-11-2013, 12:22 PM   #13
Farmwife
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I also come for my 'balance', my yin and yang so to speak... from who else but Farmwife and Crohnsinct!!!

:
Ya sorry about that. Crohn'sinct is sooooooo hard to control.
02-11-2013, 01:06 PM   #14
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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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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
02-11-2013, 01:52 PM   #15
Jmrogers4
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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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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
02-11-2013, 02:25 PM   #16
Devynnsmom
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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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Samantha, AKA Devynn's mom


Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
02-11-2013, 02:27 PM   #17
Devynnsmom
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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))))))
02-11-2013, 06:46 PM   #18
Crohn's Mom
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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

(yes, easier said than done...we all know! )
02-11-2013, 06:51 PM   #19
Crohn's Mom
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Oh ya...and not just a gentle hand and heart ~ let's not forget to treat ourselves to WINE!!
LOL

02-11-2013, 06:53 PM   #20
my little penguin
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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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02-11-2013, 08:01 PM   #21
kimmidwife
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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.
02-11-2013, 08:20 PM   #22
Clash
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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!!!
02-11-2013, 08:36 PM   #23
Tesscorm
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You are so right!!! Wish I'd remembered all that stuff last night... drank a decaf green tea which kept me up till 3am!!! 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! Next time, if I'm going to be up half the night, I'm going to think fireman, wine, poles..... and smores!
02-11-2013, 09:30 PM   #24
Clash
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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!
02-12-2013, 12:03 AM   #25
Hope345
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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.

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

Last edited by Hope345; 02-16-2013 at 03:10 PM.
02-12-2013, 12:27 AM   #26
Twiggy930
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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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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
02-12-2013, 06:36 AM   #27
Catherine
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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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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
02-12-2013, 12:09 PM   #28
crohnsinct
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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

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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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
02-12-2013, 12:18 PM   #29
Clash
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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!
02-12-2013, 02:38 PM   #30
jmckinley
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Join Date: May 2012
Location: Alabama
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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Crohn's Disease Forum » Parents of Kids with IBD » How are the parents of kids with IBD coping?
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