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MattsMum

Joined
Jul 3, 2011
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Hey all, hope all is well out there.
I know it's been a long while since I last posted here or stopped by. I am sorry. I feel awful now for coming here asking for more help, when I haven't been around to reciprocate the fantastic support we had last time round.

It's been a long and hard few months, which sadly ended when Matt passed away 3 weeks ago after a long hospital stay. Would rather not go into here right now, its all still far too raw, but may go some way in explaining what's happening with Ella right now.
I should say that she's never been a bleeder. Her CD is mainly in her mouth and TI/Upper Colon. For the past few days she's been spiking a temp, complaining of tummy pain (again), and then this evening screamed 'mummy' from the bathroom. Ran as quick as I could to get there, and she was stood over the toilet pointing to the red water! My heart sank, I cried and am now praying, please God not another seriously ill child. Now I'm on pins, Ellas on the sofa having been dosed up on Calpol and I've left a message for her IBD nurse.
I just need to ask for some advice. How do you know when a bleeds not just the 'norm', meaning do we rush asap to A&E or do we sit this out? I know I may now sound neurotic (more so than the usual), but I am honestly scared stupid. Could this just be a 'stress' induced flare? Up until Matts passing, Ella was doing really well and seemed to be symptom free.
Any thoughts most helpful right now.

Thanks, Nic xxx
 
I'm so sorry to hear of your loss. But if Ella's never been a bleeder and she is having bleeding all of a sudden, I would say A and E. Itmay be stress induced but better to nip it in the bud now!
 
Nicola,
I am so saddened about Matt. I wish I had a good answer about Ella. I always get worried when there is blood and speak with the doctor. I know blood can happen with crohn a disease but I would speak to her doctor anyway. Please let us know how else we can help you. Just know we Re here for you
 
Thanks both. Think I just needed a bit of validation for taking her there. Don't want to be seen as a mum panicing, and being OTT.
Throwing caution to the wind and heading to A&E. Just wish it wasn't the same hospital where we lost Matt.
I hate this damn disease!!
Nic xx
 
I am so very, very sorry to hear about the loss of your son. This truly breaks my heart.

I wouldn't waste anytime with a toilet full of blood, especially if it is uncommon for your daughter. Take Ella to the hospital. Even if it isn't serious (which I certainly hope it's not) - it's better safe than sorry. And I agree, Ella's flare could be induced by the stress caused by the loss of her brother.

I really hope everything will be okay with Ella! I will be thinking of you and your family. Please keep us posted.
 
Hi Nic...(((MEGA MEGA HUGS)))...:hug::hug::hug:

Please don't apologise for not being here Nic. You had far, far more important things to do and places to be. We all understand that and wouldn't expect it any other way.

I was so saddened and shocked to hear about Matt. I wish I could have been there then and now to help you, to support you, to hold your hand. :heart:

Oh my goodness, it's no wonder you are beside yourself with Ella. I agree, this is a new symptom and so should be checked out ASAP.
To be honest Nic, after what you have been through with Matt, I think for your own peace of mind you should have it checked out regardless. And I also think you may well be right in what you are thinking about Ella flaring after losing her brother. It is such a difficult and dark time for you all.

I so hope this settles for Ella soon, bless her. We are here Nic anytime you feel the need to pop by but just know you are like an old and dear friend, the silence is never awkward and you will never be judged by your absence. :)

Thinking of you all hun, now and always, :hug:
Dusty. xxxxxxxx
 
Nicola, my heart breaks for you. I can't imagine what you are going through right now and so close to the holidays. We are always here for you , no matter what, when you want to share your feelings please do so. As for your daughter, tragic things , moving, are some of the stresses that bring on the disease. I know it sounds gross but take a picture of it. That way you could send it to the IBD nurse or doctor. Either way, she needs to see a doctor and soon.

I am so sorry I am at a loss for words... hugs to you and your family at this trying time. :ghug:
 
Nicola, I am so sorry for your loss. As is Pen, I am lost for words, but I couldn't read and not post. I hope they get Ella's bleeding under control, and she goes back to being well, so you can start to heal. :hug:
 
Oh Nic, I too am at a loss for words! I am heartbroken for you and your family for the loss you have suffered. You will be in my thoughts and prayers!

In no way are you being neurotic! Have Ella checked out and be sure that all is taken care of! Praying that it is quickly treated.

:ghug:
 
My heartfelt condolences, the loss of a child, there can be no worse heartbreak in all the world.

Please take Ella in with the bleeding. The stress in the household and the grief have taken their toll. This is understandable.

Please do not forget to take care of yourself during this time. You need to my luv. Is there anything we can do for you?
:ghug:
 
Nicola, it breaks my heart to hear about Matt. I pray that all will be well with Ella, and that we can try to support you through this. Much love and condolences to you all xxx
 
Ugh, I am so sorry :(

What terrible news.

*sigh*

I don't have any advice other than what was said earlier in the thread regarding your daughter, but wanted to offer my most heartfelt condolences. If there's ANYTHING I or crohnsforum.com can do for you or your family, please don't hesitate to ask.

*hugs*
 
I started at this thread a while not really knowing that what to post. I don't know what else to say but I'm sorry.

I too would take her down. I don't think there is any need for feeling over protective ever. I'm 20 and my mom still talks to my GI regularly.
 
I don't even know what to say. I am so sorry for everything, and my deepest thoughts go out to you. I will keep and your family in my prayers and I know you will find the strength to pull through this. I too will do anything I can do to help out in a time like this.
 
Oh Nic, I'm so sorry. I agree with all said. Under the circumstances, no one could fault you for any precaution you take. I can't imagine Nic, so sorry for you.
 
Thank you all so much for the messages left here. Cue more tears!
We did go to A&E last night, and yes they thought I was being an over anxious mum. Tried hard to explain that bleeding isn't usual for her, but the tummy ache always presents when she's ill. They checked her over and sent us on our way with the advice to keep dosing on Calpol through the night, and to call her gastro in the morning- like I wasn't going to anyway!! They did take bloods, and we got those reults this morning when I rang the secretary. Her CRP is up to 73, so I guess I can safely say, here we go again! They've increased her pred, and we're to see the consultant on Weds. Should we have any further episodes of bleeding, we're to head back to A&E.
We're now keeping her from school until the new year. To be honest, I would keep her home forever right now. I hate having her out of my eye sight.
I wonder how much this episode could well be contributed to Dan and I? She's obviously more than aware of how difficult this is for us right now, and I'm in no way dismissing her grief here, BUT I do wonder if her seeing us distressed has caused her to become more anxious? We have tried hard to keep it away from her, but sometimes the tears just flow. Just thinking out loud ....
Again, thank you all so much.
Neurotic Nic xx
 
Oh Nic...I started reading this yesterday and couldn't get myself to reply without tearing up (and here I am at it again!).....so sorry for your loss - and don't EVER feel like you are being over neurotic - YOU know your child and what is and isn't normal...sometimes it is a struggle to get the doctors to see that.

As for he grief- I am sure that could be part of it - I hope she doesn't try to hold it in - although she might thinking it will make you feel better (kids are like that - my own daughter is!).....have you all sat down and had a good cry together? Maybe to show her it is ok to grieve.....
 
To be honest, No. We've tried being stoic, and probably been over eager for her not to see us in our worst moments. We've sat down and tried to talk with her and explain as much as we could. She knows she's free at anytime to come to us and cry, we've told her we won't be angry, but may well be sad with her. As of yet, she's been rather unresponsive to the offer.
Maybe we've handled this all wrong, but its all still raw. Funeral was only last Thurs.
I just want my lil angel well again.
 
Do not call yourself Neurotic. You did the right thing, and like you said, take her to the A&E again if she bleeds more. Who cares what the nurses think. Guess what? If it was their child, they'd do the same exact thing.

I really hope Ella response quickly to the pred and feels better soon.
 
:ghug::ghug::ghug:

We are all here to wrap our virtual arms around you, anytime.
I am so saddened for your loss.
Little Matt was one of us, a part of us.
And Ella is as well.
That will never change.
Come and go as you please, you don't have to explain; we will never judge, we will only try and help.
Just please know that we feel a sense of loss with you, but can't begin to imagine your pain.
Nic, my heart, and deepest sympathies are with you. :heart:
 
MattsMum said:
To be honest, No. We've tried being stoic, and probably been over eager for her not to see us in our worst moments. We've sat down and tried to talk with her and explain as much as we could. She knows she's free at anytime to come to us and cry, we've told her we won't be angry, but may well be sad with her. As of yet, she's been rather unresponsive to the offer.
Maybe we've handled this all wrong, but its all still raw. Funeral was only last Thurs.
I just want my lil angel well again.
Click to expand...

I dont know what to say, as nothing is going to take the pain away. But children are very sensitive. They are much more in tune with energies and the unspoken things than adults. They understand things differently than we do, but sometimes I think they are so much more authentic and understanding, in their own way. Be real around her, and invite her to be the same, and let that be ok for her, and for you. This is raw for you, and likely to be for some time, well, a very long time. She is a part of that, and sadly that stress and emotion is going to impact on her disease. The fact that you are worried and taking care of that at the time of this raw emotion, speaks volumes to me of your character. You are amazing. I think you need to give yourself alot of credit for not falling down a hole, but rather looking around you in order to help your daughter.
I only wish I had a magic wand to take your pain, and your families pain away.
:ghug:
 
Oh Nic, you haven't handled anything poorly...:hug:

Young children, more often than not, see death differently. At Ella's age they often don't recognise it as final and so don't have the emotions we expect them to, she may not cry because she thinks at some point he will come back. They also have difficulty expressing their emotion so may act out in play instead. I know you are being honest with her so continue to do that but show the emotion openly also. If she asks why you are crying tell her you are sad because you miss Matt and this may be what prompts her to ask questions. I guess what I am trying to say is, be yourselves in front of her and if that means crying then that is fine. By the same token if Ella doesn't cry or seems indifferent that is normal too given her age.

I think when you feel up to it go online and buy a book about dying for young children that one day you can sit and read together. It may not be needed for a while yet but when the questions do start it can be very helpful to have it there on hand.

I'm less than impressed with the staff at A&E, particularly when this is the same hospital you always use. They should be ashamed of themselves and know far better than to behave like that after what you have already had to endure. :hug:

I don't like raising this Nic but I don't want to pass it by either. One of the things that Ella may be feeling at times is fear BUT this is only a maybe and i only raise it because she has CD too. Just keep it in mind, particularly if she goes to the hospital, I know I don't need to say anything more about why.

I hope more than anything Nic that the Pred settles things for Ella again. If there is anything I can do for you Nic please don't hesitate to ask. I'm here.

Much love, :Karl:
Dusty. xxxxxxxx
 
Nic,
You are sooo not being neurotic and don't let the nurses tell you anything different. You have every reason to be worried. Your whole family has been through so much already. We are thinking of you guys and wishing there is more we can do to help. Remember we are here for you if you need anything.
 
Hi all, just wanted to stop by to wish you all a Mery Christmas and a Happy and Healthy 2012. Thank you all so much for the support offered to us during Matt's hospitalisations and more recently. It really has been appreciated. Hoping to be around much more come the new year.
As for Ella, well she's flaring good and proper. It will certainly be a low key Christmas in our house this year. The bleeding's a bit hit and miss. We think we're over it, and then it comes back. Having seen her consultant on Weds, we are looking at stepping up her regime come January. For now, we'll just sit out Christmas and hope for a better 2012. Let's be honest, it couldn't possibly be any worse than this year!

Hope you're all doing good out there, and the kiddos too.
Thinking of you and sending loads of love,
Nic, Dan and Ella xxxx
 
Hey Nic...:hug:

Thinking of you guys. i hope things settle for Ella, bless her, and that 2012 does indeed bring much better times for you all.

My wish for you is peace, strength, good health for Ella and nothing but good times ahead. Merry Christmas my friend.

Always in my thoughts, :heart:
Dusty. xxxxxxxx
 
Nic, I wish you and your family health! I wish you peace. May 2012 bring you and your family both.
 
All the best in the new year Nic, I know you have been through so much, as your family has too. Low key is expected. Just know that I am sending you an extra prayer. Hugs to all of you!
 
Nic,
I too am wishing you guys all good things in this new year and for Ella to improve quickly and get into remission. My thoughts are with you and your family wishing you all the best.

Kim
 
Oh, I do hope Ella's flare can get under control soon. I hope you and your family have a wonderful Christmas, and I am praying 2012 will be a wonderful, healthy year for you all.
 
Hello Nic,

I am fairly new to the forum, but I just wanted to say I am thinking of you. I am so so sad to hear of your loss. I can only imagine the pain you and your family are going through. I hopre you have lots of love and support surrounding you to comfort you now and in the future.

I hope Ella is soon feeling better again.

Take care,
LilyRose
 

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