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Crohn's Disease Forum » Parents of Kids with IBD » Will I fall apart each time there is a flare?


01-18-2012, 03:53 AM   #1
LilyRose
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Will I fall apart each time there is a flare?

A strange question -

I am feeling OK emotionally at the moment. My son (6 yo)has currently 'minor' issues with his crohns. But I don't feel I've really got my head around it, and if/when he has a major flare up I wonder if I will just fall apart. I bit like an emotional wound being opened up again. I wonder if I will be get better at coping with flare ups and the uncertainities and the decisions on treatment etc as time goes by.

I wonder if others feel that grief each time their child goes through tough times? I guess we always will - because we love them and it hurts us to see them in pain.

Sorry - I don't know what my question is, I just worry that I won't have the strength to keep it together if he gets really sick - and I know that would be what he would need from me. He doesn't need my worries adding to his burden.

Any thoughts??

Sorry for the rambling.

LilyRose
01-18-2012, 06:28 AM   #2
Dexky
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Yes, you will! But we'll be here. I guess moms are more inclined to worry but I think I'm an exception to that rule. I don't think I will ever get my head around my son's crohns if that means I won't be devastated every time I see him in pain. He hasn't had any serious complications since treatment began over two years ago so I can't say exactly how I would react. I don't imagine it would be much different than when he first got sick.

You'll never get used to it Lily but you will settle into this. You really have no other choice. Good luck!
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01-18-2012, 09:11 AM   #3
Tesscorm
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Agree totally with Dexky. My son has also not had any real setbacks since his diagnosis last year but, as you read, being faced with the prospect that my daughter would be diagnosed with another auto-immune disease (RA) together with my son's higher inflammation levels and upcoming appointment were just overwhelming ... I did feel like I was reliving all the emotions of his diagnosis. But, only for a few days, until I got my head around it and, again as Dexky said, until I felt everyone's support/understanding. We're parents and, as much as it hurts us, scares us, angers us, when push comes to shove, our kids will come first and we will find the strength to do what we need to do.

I hate the thought that the worry will always be simmering, just ready to go at the slightest issue... but, I believe (hope!) as time goes on, as a new flare passes, we will also gain confidence that the 'bad spell' will pass.
01-18-2012, 11:05 AM   #4
Jackman
 
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I can't tell you how nice it is to read these posts. My 11 year old was recently diagnosed and you all share the same fears and worries that I do. I initially felt that no one could ever know how sad I am for him. Now I know better.
01-18-2012, 11:13 AM   #5
Sascot
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Strange, I was just thinking the same thing the last few nights. I don't know if I will ever get over the worry! It's only been 6 months roughly and I have good days and bad days. Keep wishing the docs would tell me they made a mistake.
I suppose that's normal - I just try to worry/cry when he can't see me and pretend everything is ok when I speak to him.
Hope everything stays good for as long as possible!
01-18-2012, 11:20 AM   #6
mizgarnet
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I am in my late 40s and my mom still "falls apart" if I have a major flare. The mini-flares now just upset her. I have been dx'd for 20 years. I think it is natural. You do get better at understanding and decision making.

Wendy
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01-18-2012, 11:47 AM   #7
Brian'sMom
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This is also one of my worries cause I had a really hard time last year when he flared badly for the first time. We've had times of seeing blood recently, but it has resolved itself quickly with diet, so far, so i never had chance to worry! I just pray remission lasts and lasts...maybe we'll be blessed with that request.

I think knowlege helps. When I had a lot of anxiety it was because I didn't know about the disease and the medications. I also felt an untrust of our doctor. (We just didn't 'gel' good!) Once we switched within our practice to our current GI, things began to improve. I guess we just lean on each other is the answer too...cause only a cure will make it completely better.
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symptoms 2005, official dx 6/2010

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Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
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Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.

Last edited by Brian'sMom; 01-18-2012 at 02:03 PM. Reason: Added more
01-18-2012, 01:57 PM   #8
Devynnsmom
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I always get emotional and wound up when my daughter flares. She is 10 and was *unofficially* diagnosed in Dec 09 at 8 years old. She is flaring right now, she is very gassy, loose stool and the worst symptom is the skin on the bottom of her feet coming off. It started just her toes, but now it is about half of the bottom of her foot as well. I am an emotional wreck. I try not to let her see that it bothers me, because it upsets her. But sometimes we can't hold it all in. I reassure her that it hurts me to see her hurting, and thats why I am upset. ((((hugs))))) I just found this forum, but I can feel the love and support from the members here. I will def be hanging around. I hope your son is feeling better real soon.
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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)
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01-18-2012, 03:17 PM   #9
imwood
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My younger bro is 25, and my Mom is 55... she still "falls apart" when he has to go to the hospital (He has both crohns & AS, and both are pretty severe, so he's in & out a few times a year), or she learns of new damage found on his x-rays from his ankylosing spondylitis, or she sees him moving slowly or wincing from some pain. He is kind of a sucker for pain & was having everyone feel the lesions on his collarbones (yes, lesions on his actual bones) from the AS, and she touched one, shivered, then walked away joking about it but I could see tears in her eyes. And he's been dealing with this stuff since he was 14, so she should be "used to it" by now.

So yes, no matter how long we have to adjust to the situation, I think on some level we'll always cry for our children when things get bad, and have a constant ache knowing that we can't "make them like everyone else." I know I sure do.
01-18-2012, 03:32 PM   #10
DustyKat
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Ditto to all of the above!

Yes LilyRose, you will fall apart at every flare for the rest of your life because he will always be your baby......sometimes you will curl up in a ball and cry and other times you will be strong on the outside and crumbling on the inside. I am sure for all of us our children having IBD is the last thought we have at night and our first on waking each morning.

I guess the important thing is that it is so imperative that we feel this way because it means we have empathy for our children, we are one with them. We feel every ache, every disappointment, every hurt, every breath, every success. We would lay our lives down for our children and I truly do believe the feelings that we have for our children are just as important as any treatment in their healing process.

You will have the strength LilyRose, I have no doubt about that. You will find strength within yourself that you didn't know existed until the time comes to draw on it. When my daughter was diagnosed with Crohn's I was in shock, then when my son was diagnosed my world fell apart. How the hell was I going to cope with 2 children having this disease? Would I have the strength and capacity to do it? I didn't know how I was going to get through the day let alone the week, month or year but I had to, as Dex said...what choice did I have? I had no choice and of course the love and empathy came surging to the fore. Once again I managed when times became hard, it broke my heart and soul at times to watch him, to tend to him, to hear him but we got through it together and we always will.

I now find myself with two children in remission and I still go through bloody hard days but that's okay. In many ways I find this time harder than when they were sick and I think it is because when they were ill I only had time to focus on the here and now, live minute by minute. Once well my thoughts drift to the future, what it will hold and the knowledge of just how fleeting the good times can be. I don't dwell on it and as time passes so the dark days, what I call my black dog days, become fewer and farther between. I know someday I will go back to square once again but I also know that it won't always be like that.

Dusty.
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01-19-2012, 01:22 AM   #11
LilyRose
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Thank you, thank you SO SO much to each of you for those wonderful words.
I thank each and every one of you.

I can't tell you how I felt to read them. And I feel a weight lifted off me - to just accept that I will 'fall apart' when my little one has flare-ups and is suffering, and that is normal. But then I guess then the trick is to then get it back together and support my little boy.

Perhaps I will have to be mindful to allow myself some time and space to be sad and cry in privacy and then I can gather strength so when I am back with my boy I show him how to be positive and resilient.

It really helps so much to read your replies - being in touch with other parents makes a huge difference to me.

LilyRose
01-19-2012, 08:32 AM   #12
Devynnsmom
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((((((LilyRose)))))) I wish I would have found this place when my daughter was first diagnosed. I do belong to a forum (parenting) on another site. But nobody there has a child with IBD, so there was nobody to talk to. A few adults on my forums have IBD, but its not the same. They can give advice etc. But this place is so informative, helpful and supportive.
01-19-2012, 10:08 AM   #13
imwood
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Aww, LilyRose, yes I think it's SO important to have those moments where you can fall apart. I've done it two or three times so far, and quite honestly felt better each time afterwards. The first time was when I said outloud that I could see the baby fat in her cheeks had disappeared bc she was losing weight. I'd been strong all week while she was in the hospital, but coming home, decompressing, having someone to talk to & saying that aloud was the "breaking point" and I had a little meltdown. It was really relieving.

I've done it twice more, just little mini-cries that only had a few tears, but each time they not only startled me a bit, but also made me feel better afterwards. (Rosalyn was not around when they happened). A good, hot bath with your partner & a long discussion seems to be a trigger for me lol. We spend so much time cooped up, just dealing and being strong, that we forget the need to process our own pain & emotions. Remember, these children are literally made from us, made OF us. Of course we will hurt when they hurt.

Go ahead and fall apart

((now realizing how lucky I am to have my mother to lean on, who knows exactly what it's like to parent a child with Crohns.... that is pretty special... now trying not to cry at work... thanks a lot, stupid forum... haha))
01-19-2012, 11:14 PM   #14
kimmidwife
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Lilyrose,
thanks for posting this. I was thinking I was the only one!
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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.
01-23-2012, 02:33 AM   #15
LilyRose
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Thank you again for your posts. It means so much to talk to others that understand. And i have felt so much better in the past week since posting this. I think I had unrealistic expectations of myself - of course I would hurt every time my child is unwell and suffering. So I have given myself permission to cry if I ever need to. But then be there for my son to support him.

Thank you,
LilyRose
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