Did you/Do you cry?

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farmerswifey

farmerswifey

Joined
Aug 10, 2012
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137
When your child was first diagnosed, did you cry? I mean really really cry? I've know officially for a week that my 9 yr old has Crohn's and it's only really just hitting me now. I've cried every day, 3 times today, and I'm in tears now..full on body shaking, sorrowful sad tears.

As we are having issues with him drinking his milk on EEN and he just wants to go back to normal and "use his teeth to eat", and he looks at me with these big eyes, and I can't trade places with him, I'm sitting here like the world is going to end.....

Tomorrow is another day, another reason to see the sunshine, but man, I feel heartbroken tonight. I'll wake up positive tomorrow knowing that things could be worse, but this is our reality, and that is that this was not expected, and now it's our life..

Thanks for reading..x
 
Just saying hi, and I'm thinking of you and hoping life gets better soon..
We Aussies have to look after each other :)
Hope your little one is feeling happier and healthier very soon!


HD
 
I found that the toughest time was at the beginning. You're suddenly thrown into a new world, dealing with issues you've never even considered! :eek: You don't know what to expect and you're fearful of how your child's life will be affected. You've done everything to make your child's life as perfect as it can be and, suddenly, it seems you have no control over something that will have a lifelong impact. It's heartbreaking and it's certainly okay to cry and mourn for the way your life was before this all happened! :( BUT, it really does get easier!!!

Hopefully, the EEN will take him into remission - it did for my son! :) And, if not, there are other treatment options. There are many people with crohn's who are able to control the symptoms and lead full, active, happy lives. I won't say that your life hasn't changed and, even now, more than a year after my son's diagnosis, the first sign of 'anything' creates all sorts of concern for me. But, I don't panic as I once did. :heart:

Sadly, I think most of us live expecting that there will be setbacks and new worries, challenges and wondering when the next shoe will drop! :( But, learning and researching has been key to helping me deal with this - I feel it has given me 'some' control over this disease and the impact on his life, whatever comes our way, I am now aware of it and I won't feel that horrible sense of helplessness I felt when he was diagnosed. EN has been my son's maintenance treatment but we may have to add medication soon - I have no doubt that it will be heartbreaking for me and I will be here crying with fear and frustration! :eek: But, as much as I hate having had to learn this, I have learned that we all (my son, me, my family) have the strength to deal with whatever comes our way. :heart: And, as you said, "Tomorrow is another day, another reason to see the sunshine". I am hopeful and confident that, if not a cure, at least newer and better treatments are always coming along that will help everyone with this illness.

The members and parents on this forum have been great, I can't imagine how much more difficult the first few months would have been without their support and knowledge - don't ever hesitate to reach out for help, advice or even a laugh when you're feeling better. :ghug:
 
I cried like that for about 2 weeks. The first time I gave him his meds I thought "yesterday was the last day of his life he won't have to take medication". My husband thought I was focusing on the negative and I was but I needed to do that. I had to go to the worst case scenario in my head, wallow in it for a bit and then I was able to move. on. It really does get so much easier. It has been 10 months now and life is good again. I still get pangs of fear or jealousy of parents whose kids are well but they pass quickly. I count my blessings. The most important reason to do this is for your child. I realized that I wanted him to be confident, to push himself and to have a positive attitude. We have strong faith and I think I came to terms with that fact that this is our sons path and that God still has great things in store for him. That was just how we dealt with it personally. I also googled famous people with crohn's and read about professional athletes and Presidents with IBD and realized it didn't have to change his life as dramatically as I thought. I also know that meds are improving so quickly that what this disease was just 20 years ago is dramatically different and what it will be in 20 years will be dramatically different too. I am convinced our boys will have an easier adulthood because of all of the new meds that will be coming our way.

Give yourself sometime Momma, you need to grieve a bit and that is okay.

((((((Hugs)))))))
 
:hug: Hugs to you. Diagnosis really is the hardest time. Yes, I cried...alot. I hurt for the normal life Ryan wouldn't have and the days of no medication, no worries, the foods he'd miss...But, it has gotten much easier. We have been dealing with Crohn's for 3 years now. Read, read, read! The more you learn ,the more at peace you'll be. I am a control freak! Being able to recognize symptoms and discuss things with the Dr helps alot. There are some great meds. You're in the right place for support. When friends around you don't understand what you're going through, you'll find understanding here.

You will find a new sense of normal and things will get better. We can't take it away, but we can be there and be active in treatment. That's the best thing to do. My son is 15. He is in high school, marches in the band and plays in a local blues band, and is learning to drive. He's the happiest he has ever been and he really appreciates things, even in the shadow of the looming flare.

It will get better!
 
Yes, lots of crying! I still have a little sniffle every now and again now, mostly it's just a feeling of sadness that my son will never have a life away from hospitals, tests and medications for any great length of time. However, I now truly appreciate the times when he is doing well and we have no immediate hospital visits. This forum has been a blessing - having people understand what it's like. My friends are supportive but can never really understand what it's like to live through.
 
When my daughter was first diagnosed i couldn't and didn't eat for days and the crying was never ending. But slowly i realized this disease was here to stay and i didn't have a choice but to deal what life had thrown at us. There are still times when i get angry and upset but i try to stay positive. Believe me things will slowly get better . Please take care your son needs you.
 
I don't know if my parents cried. They never did in front of me. I was 9 too and hospitalized for over two months. I had my own room and my parents slept in the other hospital bed in my room (I think every night). My sisters and brother stayed with our grandparents and my parents would leave for hours each day to go see them. They never showed their feelings to me but my mom said that she always slept with one eye open. One of them would see me getting up to use the bathroom in the middle of the night and would help me cart my IV back and forth.

Don't really know where I was going with that, just sharing a child's perspective I guess. :p
 
Oh yes! I cried when he was dx w/ epilepsy, when he was first diagnosed w/ Crohn's (although that is not not definitive), but most when he was dx w/ Cystic Fibrosis. It is a normal process ... and I kept the tears away from Danny. I was also almost obsessed with he need to research. This link may be useful too ... to know you are not alone:
http://www.crohnsforum.com/showthread.php?t=22520
 
Oh my goodness I cried and cried ( of course being six weeks postpartum with her baby sister did not help). I still get sad for my beauty but I know she will be okay. I will tell you when she had her surgery in December 2010 she actually was the one that got me through it. She never cried the whole time. I cried nonstop. These kids are amazing they have so much strength. It is just incredible. It does get better with time.
 
I cried but it was some time after diagnosis, I was almost relieved at diagnosis to just finally have an answer. C's pain got even more severe shortly after dx and one night he was just curled up in a ball rocking and tears were just rolling down his face. He wasn't saying much and that is when it all hit me....chronic lifelong illness, helplessness, carefree days of childhood, I was completely overwhelmed. After he was finally able to go to sleep I broke completely down. I don't think I have ever cried so much in my life or felt as helpless as I did that night. It does get better, they start to feel better and resume their schedules and life becomes the normal school/sports/social chaos that it always is but there is always that sense of tho other shoe dropping that everyone has spoken of.
 
I cried... weeks of crying. I think it's pretty normal to think about all the things our children have to go through and will go through with this disease and how it's going to affect their life.

I remember looking at pictures of post-surgery Crohn's patients on Facebook, seeing their scars, their j-pouches... and I'd highly recommend you not do that! While you need to be educated and do your research on Crohn's, stick to what applies to your child today and take things one day at a time. Knowledge is power, but don't overwhelm yourself either because some of the things you see or read about will never apply to you. Even within this forum, our stories and symptoms are all so different.

On a positive note, my relationship with my son has become so wonderful I can't even put it into words. He's had Crohn's for 4 years now and we are closer than ever because of it. He knows I'll always be there for him because I have been. He knows I'd give the world to trade places with him because I've told him. He knows he can call me at anytime when he's not feeling well and I'll come get him. He knows what to expect from the disease because I keep him up to date on research and share other kid's stories from this forum.

Cry as much as you need too, but look for the silver lining too!
 
Yes I cried, really really cried. The thing is, Chloe didn't and somehow that made me cry more. It's hard to believe that it gets better but it does. This forum was absolutely the best thing we found. Chloe was diagnosed a year ago and while I wouldn't want to live that year again, we have come such a long way in understanding what she needs to be well. You too will find what you need and your little boy will get back to a much more normal life. Very best wishes to you, and welcome.
 
I have cried BUCKETS and BUCKETS. Heck, this thread has made me cry... I do for the most part feel better about it all now. By better I mean that it is not devastating to me every time I think about it anymore. It has become normal. I still get sad and a bit down but it takes less time for me to come out of it than it did just after diagnosis.

It was so hard for me to watch my son do the 6 weeks of EN but in the end I was so proud of the strength he showed by sticking it out. We found that distraction was the best tool for those times when he really wanted to eat something, video games were most convenient. My son also enjoyed counting down the days on a calendar in bright red marker, only problem with that was when they added a week at the end...

:hang: it does get better.
 
I cried in the doctors office when he gave the diagnosis and didnt stop for a full year. I cried when I spoke about it, when I thought about it, when I met somebody and was telling them for the first time, when I heard about another child with crhons, when I thought about the potential implications of 6 mp, when she cries going to the loo, when she tells her Crohn's to stay asleep. I Cry and imagine I will continue to do so for a long time yet, however I have to say 15 months in the crying is less frequent.
 
Aww thank you everyone, so I'm not the only one who cries then!!!!!

Someone said to me "you will find a new normal" and I really like that saying.....

Hugs to you x
 
I dont know if this will help or not but I'm a 14 year old girl and I was diagnosed with Crohn's last year, my mam was most probably upset by it but she never showed it much in front of me. From a child's point of view it does get easier and just becomes another part of life really. Sometimes if I really, really think about it it starts to upset me but I try not to do that. If its any constellation, although it may seem mad from a parents point of view, when I was first diagnosed I wasnt too bothered, it was just another thing to tell my friends. Obviously thats just my point of view and it may not have helped but I hope it gives you some insight on what your child is feeling, I hope he feels better soon!
 
I did cry and I still do cry. :cry:

When my daughter was diagnosed it was some time before reality struck. Her diagnosis was hard, brutal and fast. I think I was in shock but the reality soon set in and so did the tears.

Then my son was diagnosed. For me I think the second time round was harder than the first. Perhaps in the first instance ignorance, on my part, was bliss. I didn't know how the hell I was going to cope with two children with this disease. I stayed strong in the waking hours but come night time I curled up in ball and sobbed and sobbed and sobbed.

Time marched on and hours became days and days became weeks. The crying lessened, as it does and indeed a new normal, but normal just the same, settles over your life. As your precious child responds to treatment you see glimpse of normality returning and soon those glimpses becomes full on hours and days of blessed 'normality'. Normal takes on a whole new meaning and the things you once looked upon as mundane and boring you now grasp with both hands and appreciate in a whole light. I have said it before and I will say it again...people say when you have a life altering experience it changes the way you see things...and it does and it did for me. Boring, mundane and normal are now blissful to me because it means my babies are well. :)

I am quite a way down the track since our first diagnosis but I still have my black dog days. I think I always will but that's okay, it's okay to mourn the fact that my children will never have a truly normal life, that the surgeries they have endured have left a lasting legacy but that's what being a loving and devoted Mum is all about and that is what you are hun.

The feelings you have are normal, natural and just, don't fight them or feel that there is something wrong with you because there isn't. The crying will make you stronger and better able to cope with the days lay ahead. :hug:

As DevonM has said, from her perspective it was something that had to be dealt with and got on with and that is how my children viewed it too. They both essentially said to me...I'm fine Mum. I have this disease, there is nothing I can do about that so I just have to get on with it. Our children are so strong and determined that I think we do some of the crying for them as well. We feel their pain and suffering, both physically and psychologically, so acutely.

You are doing just fine Mum and things will indeed get better. We are here for you anytime you feel the need hun...:hug:...and the true advantage of a world wide forum, it's always 5 o'clock somewhere! :lol:

:hang:

Dusty. xxx
 
Hey Dusty (and all the other seasoned veterans),

I know your kids are well on their way and that you are on the other side now but I just wanted to thank-you and all the others for sticking around and sharing your experience and advice with all of us newbies (well maybe I am not so new anymore but definitely still a rookie).
 
Awww thanks crohnsinct...:hug:

I actually only hang out here 'cause I don't have any real life friends!...:ylol:...only it's not a joke...:shifty-t:

Dusty. :Karl:
 
crohnsinct said:
Hey Dusty (and all the other seasoned veterans),

I know your kids are well on their way and that you are on the other side now but I just wanted to thank-you and all the others for sticking around and sharing your experience and advice with all of us newbies (well maybe I am not so new anymore but definitely still a rookie).
Click to expand...



crohnsinct that was so sweet to say and I completely agree.:rosette2:

:shifty-t:Hold on.................you haven't been drinking again.:yfrown:


:ybiggrin:
 
Praying for you and your baby. It has been a little over 6 yrs now since my son was diagnosed. I cried after the doctor told me and left the room and cried several times a day every day for a long time. I still get upset and cry as someone else said over the childhood he was robbed of, and the worry over how his future will be. But you do find a new normal, you appreciate the little things more and truly are thankful for the days of good health. Hang in there, it does get better, just remember be strong for your baby, they need you. Hoping things improve for you all soon.
 
I really feel for you writing this. My little girl hasn't got a diagnosis, but I already feel like clash wrote. Lifelong illness- crohnic- no cure- no great length of time without meds, pain, it's depressing to say the least. And crabby- one of my main fears is jas flaring when I am. If I need to go to hosp with an abscess or what ever, and she does too. I don't really have a reliable person to look after her, except my sister a half hour drive away. And it terrifies me, that she could be in as much pain as I have had with this horrid disease. And I think the hopelessness! Like its ongoing your entire life once diagnosed. Cry as much as you need to! I'm afraid I'll completely break down in sobs in front of jas if she gets diagnosed. And I can't even imagine her needing a bowel recsections.
Dusty- you bought tears to my eyes with your comment! And as far as friends, it's amazing how life changes when your dealing with crohnic illness. I'm so happy for normal moments too. If jas is happy and isn't in pain, and my crohns isn't too bad, it's so much better then anyones idea of normal, that has never had to deal with crohns.

Hope your feeling better soon, and that your child can be in remission ASAP. Hugs to you! Xoxo
 
I can't even begin to imagine what it must be like to be in your position Irene or any of you that have IBD and a child with it also. :hug:

You are all in such a unique and yet bittersweet position. On the one hand what could be better for a child than to have someone that loves them so dearly and unconditionally, that has insight to their feelings and experiences and as a result someone that will be an exceptional advocate for them. But then on the other hand with that insight comes the additional pain and fear of knowing exactly what they are experiencing. My heart goes out to you all.

Dusty. :heart:
 
I cried so hard when Amy was in the hospital and GI told me he was absolutely positive she had the most severe kind of Crohn's. Had to tell my kid I had something in my eye then rushed to the bathroom for a private cry. Unfortunately two minutes later nutrition lady was in trying to teach me how to put an ng tube in her. I think the poor woman probably wasn't expecting to deal with that. I also felt pretty depressed a week later as we were supposed to be taking a nice holiday to Mexico, I guess we swapped a hotel room for a hospital room. Luckily for us things did turn out to have a much better ending than I could ever have hoped for. I think taking things day by day and not trying to look too far into the future or reading too many scary things on the internet, just trying to control the worrying thoughts, (yeah I know easier said than done) are some of the things that may help you through this tough time.
 

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