# Matts Story



## MattsMum (Jul 3, 2011)

Hi there,
I'm sorry if I'm double posting, but I really am not too sure where Matts story should go. Here or in Your Story?

Briefly, Matt is almost 3 and has Crohns in his Colon and Mouth. He's been in hospital now for almost 2 weeks as they try and get the inflammation in his colon under control. He is currently also having Hydrocortisone Iv's 4 times a day. We hope to be trying Infliximab soon in the hope of preventing his colon from being removed, and with him ending up with an Ileostomy.

Matt's mine and hubbys world. We just want what's best for him, and for him to have a normal childhood. For now though, it just seems impossible. He really is a happy chappy. Never complains nor cries, I think we do enough of that on his behalf. 

Hoping to meet some other parents in a simular situation to ours.
Nicola x


----------



## Dexky (Jul 3, 2011)

Hi Nicola, welcome!!  I hope you posted in both places so you'll be seen by more members.  There are a few members whose children are as young or younger than your Matt.  It's hard for me to imagine what you must be going through.  My son was dxed at 10 so he was old enough to understand at least.  I hope you all get Matt's situation sorted soon so he can grow and have a happy childhood!  Good luck and hope to see you around!!


----------



## MattsMum (Jul 4, 2011)

Thank you Mark. We have been advised this morning that his CRP has again raised. We are now at 156, up from 89 when he was admitted. I must say, all the medical terminology, the blood tests, the meds etc are all so new to us, that we are sometimes just leaving meeting's to go Google. I'm sure we'll spend a few hours today looking through here and just trying to get a handle on what's going on.
We are so ignorant of this disease, and it's impact on Matts life. We must get educated and start to understand what's going on here. 
I hope your son is doing well.


----------



## Dexky (Jul 4, 2011)

There's a lot of very frightening info out there Mum!!  I'm sure with Matt's diagnosis being so new, you are already hurting quite a bit so be careful and don't project other's outcomes on Matt  We have a wiki article that explains blood tests and many very knowledgeable members.  I'm afraid I'm not one of them, haha, but stick around.  You will see!!!


----------



## Crohn's Mom (Jul 4, 2011)

Hi Nicola 
Dex is right, it's good that you posted twice and more people will see your story.

I'm so sorry for your family and your poor lil guy..just breaks my heart to hear that he is so sick and so young.
I don't know of any other parents on this forum, besides myself, who's child has an ileostomy.  I could be mistaken tho.  My (baby) just turned 18 in March this year and woke up from her surgery with a surprise ileostomy.  So even though she is not a toddler any more, I can completely relate to how you must be feeling.  It threw her world in to a total shock and so to comfort her as much as I could, I did absolutely every little thing in the caring for her stoma. (except emptying it), for the first 6 weeks or so.  She slowly started helping with it, and she is now in complete control of doing everything on her own.  I know you won't have this option if this is what happens with Matt just yet, but I am telling you this so you know you have a kindred spirit here and I will help you the best I can, and answer any questions I can   I hope he doesn't end up with the surgery, but if he does just know that it is to help him get as healthy as he possibly can, and allow his system to heal much easier.  Also, there is a stoma subform here that you may want to browse through.  There are some amazing ostomates that will be so friendly and helpful to you, as they were to me.

I sure hope they get your lil guy under control quickly with meds tho!
Hang in there momma...we are all here for you anytime!

big hugs,
~T~


----------



## DustyKat (Jul 4, 2011)

Hi Nicola and :welcome:

Oh my, what a very difficult time for you all...:hug:

We understand your fears and uncertainties hun. What we wouldn't give to trade places with our precious children, ay? I hope you can get onto Infliximab soon and it knocks things on the head for your little 'un. 

tannersmom has a son that has had an ileostomy. I'm pretty sure he had it at a young age,  but not sure how old. I haven't seen tannersmom on here for a while but she may still be popping in. Perhaps you could PM her.

I know this is all new to you and it sure can do your head in! So if you have any questions about anything please don't hesitate to ask and we will do our best to answer. Just remember there is no limit on how many you can ask and there is no such thing as a dumb question! :lol: 

Good luck with Matt and keep us posted on how you are all going. Welcome aboard! 

Oh yeah...love the name Matt, for obvious reasons! :ybiggrin:

Much love, :Karl:
Dusty. xxxxxxxx


----------



## Crohn's Mom (Jul 4, 2011)

You are so right as usual Dusty   It completely slipped my mind about Tanners mom...I was trying to remember who it was that has given me stoma advice, here in the parents section.  Haven't seen her in a while tho.


----------



## MattsMum (Jul 5, 2011)

Thanks both for the welcome. I was told that there would be a wealth of information and support here, and she was right!
Tracy, I'm sorry to hear about your 'baby'. 18 or not, they are always our babies! I hope yours is keeping well and that her surgery was a success.
DustyKat, I see you have your hands full with 2 children with this horrid disease. Does it run in families? Matts not following either hubby or I, and as far as we are aware we have no family history of IBD. I'm sure I've read here somewhere that both of your children are in remission. I hope it continues to be that way for a long time to come.

Matts had a 'strange' night. Seems restless and having flushes. This is all new territory again to us. They have taken more blood this morning and another stool sample, so hoping above all that they return in a better state than yesterday. Our 4 year old has started to complain of tummy ache. We're hoping that its just an attention thing, and that she has started to feel a bit neglected this past 2 weeks. It's hard trying to be here, there and everywhere right now. We try and spend as much time as possible playing with her when Matts sleeping, but I'm sure its having an impact on her. 

Thank you all again for the warm welcome.
Nic x


----------



## dannysmom (Jul 5, 2011)

Welcome Nicola. I hope Matt's numbers improve today. Wow ... a four year old daughter too. Siblings can feel neglected pretty easily. My oldest son had some health issues and was hospitalized twice for 1-2 weeks almost 3 years ago. My husband made sure that one of us was with the other kids almost all the time. If it was up to me, I would have been in the hospital the entire time. It was hard to imagine my healthy kids REALLY needing me as much as my sick son. Danny's illness (was 11 at the time) started during this period and the first few months are just a blur unfortunately. Anyway ... I just wanted to welcome you. What you are going through is so tough emotionally. Early morning crying sessions seem to help.


----------



## MattsMum (Jul 5, 2011)

Hi Jeanne. We're trying hard to give Ella as normal a time as possible right now. I spend 5 nights a week here, on the ward and hubby 2 nights. One of us are always at home for bed time. We're also still trying to have family time after school, where all 4 of us sit and play and have dinner together. Its a juggling act, but we're trying to make it work.
Early morning, afternoon and evening crying sessions are all happening right now lol
Thank you for the welcome.

Matts CRP has returned at 167 today, again we're still on the up. He does seem brighter in himself though, and this morning was eager for some breakfast. Didn't take too long to be right through him, and then he went back for more! These kids are as hard as nails!

Nic x


----------



## DustyKat (Jul 5, 2011)

It's great to hear that Matt is brighter and hungry! I hope the bloods can soon reflect that hun...:hug: 

You are sure right there Nic! Hard as nails and any tougher they'd rust! :lol: 



> DustyKat, I see you have your hands full with 2 children with this horrid disease. Does it run in families? Matts not following either hubby or I, and as far as we are aware we have no family history of IBD. I'm sure I've read here somewhere that both of your children are in remission. I hope it continues to be that way for a long time to come.


It must be so hard for you Nic juggling hospital and home life. My children did not develop CD until their teens so time spent away from Matt when Sarah was hospitalised did not impact near as much as what you would be facing...:hug:
It can and does run in families and I have no doubt in our case it is hereditary. The only relative that we know of that has CD in the family is my husbands first cousin...I think both of my children developing it is a little too coincidental for it not to have a genetic link. 

Thanks for the well wishes hun. My daughter has been in remission for 5 years on the 10th July, not that I am counting! :lol: Matt is only early days yet but all clinical signs point to him being in remission since his surgery nearly 3 months ago. 

Thinking of you, :ghug:
Dusty. xxx


----------



## MattsMum (Jul 6, 2011)

Thanks so much for you kind words Dusty.

This morning Matt again seems to be rather active and hungry, its just a pity his blood work isn't quite corresponding to show the same. His CRP is stable in the 150's, but last night we had some blood in his stool. Nothing there this morning, so hoping it was just a blip. Well I seem to live my life in hope these days!
To all you other mums and dads out there going through this right now with your 'babies', my heart goes out to you all, and Wishing you all the very best.
Nic x


----------



## MattsMum (Jul 8, 2011)

Hi,
Matts been really unwell now for the past few days. His CRP has raised to 180+ and the bleeding is heavier.  Later today he has his first Infliximab infusion.
Praying hard that this will halt the progress of this horrid disease and get my angel into remission.
Living on my nerves, feeling sick at the thought of all of this.
Nic x


----------



## dannysmom (Jul 8, 2011)

Praying the Infliximab works!!!


----------



## gypsigirl28 (Jul 8, 2011)

hoping the infliximab works so there can be some relief.  your in my thoughts and prayers..


----------



## jordan29 (Jul 8, 2011)

Poor little matt hope he feels better soon x


----------



## DustyKat (Jul 8, 2011)

Oh man Nic...

I hope more than anything the Infliximab gives Matt some much needed relief...

:goodluck:

Thinking of you both, :hug:
Dusty. xxxxxxxx


----------



## Crohn's Mom (Jul 8, 2011)

:ghug::ghug::ghug:

Hoping the treatment works wonders for him!!

fingers, toes, and everything crossed ! 

Hang in there...we're all here for you!


----------



## MattsMum (Jul 9, 2011)

Thank you all so much for the kind words and wishes.
Matts infusion went well yesterday, all the better for them giving him some Calpol and Phenergan in advance and knocking him out.!!
The lil man has woken somewhat sullen this morning. Not interested at all in food and seriously grizzly. Oh well, lets see what this afternoon brings.
On another note, hubbys has phoned to say Ella has again woken with belly ache. Not sure how real this is, or if its an attention thing. Decided that I should be at home with her tonight, and have some girly time on the sofa with dvd's.  Hope this does the trick.

Right now, all I want to do is crawl into the bed with Matt and sleep. I am so tired, but seem to spend every waking moment just looking at him, hoping, praying. What I would do right now to simply have me suffer this disease rather than my baby. It's all so unfair...! Can you tell how p'd off I am? lol

Thank you again, Nic xx


----------



## Dexky (Jul 9, 2011)

I don't know anything about Inflix/Remi Nicola.  Have the docs given any time frame as to how long before you see results?


----------



## MattsMum (Jul 9, 2011)

Hoping that we should see some change by Monday at the least Mark.


----------



## DustyKat (Jul 9, 2011)

Ah Nic, unfortunately we know the feeling all too well! 

I hope this works for Matt hun. Fingers, toes and everything else crossed else mate! 

I'm sorry to hear about Ella. Do you think it might be an idea to keep a diary on her? Might just help you keep a track of her symptoms and give you a better idea if it is something more or in a response Matt's illness. We have a diary in our wiki that may give you some ideas of what to keep an eye on...Diary.

Dusty. xxx


----------



## MattsMum (Jul 9, 2011)

I hadn't thought of it Dusty. I'm honestly hoping its an attention thing, but if this does indeed run in families then maybe I should start one. Will try and talk with her about this tonight, just how with a 4 year old is hard.
Beam me up Scotty!
Nic x


----------



## DustyKat (Jul 9, 2011)

I hear ya Nic and I hope more than anything it's not either! 

I was thinking maybe you could just start one anyway, if talking with Ella doesn't help solve things, and then you will be able to easier track when it happens. If it's only when Matt has something going on then I think you could safely say it is attention seeking. Just pick out what you want, maybe just start with the pain side of things and go from there if need be. 

Dusty. xxx


----------



## MattsMum (Jul 9, 2011)

I'll get one started tonight Dusty. She didn't see Matt yesterday, didn't want her upset whilst he was having his infusion and we weren't too sure if he'd have a reaction. She'll be in with dad in a bit, so will try and talk with her.
Thank you so much for all your help.
Nic and Matt x


----------



## MattsMum (Jul 9, 2011)

Well this evening/tonight I have a fractious 4 year old Ella. Even with undivided attention, loads of hugs etc she's gone to bed complaining of tummy ache. Hers is under her rib cage (?), rather than abdo pain that Matt has. Running a slight temp. Not sure what to make of this. 
Please someone just take it all away....
Nic x


----------



## DustyKat (Jul 9, 2011)

Oh Nic......:hug:

Deep breaths...have you given Ella some Panadol (not sure what you call it there)? If not, give her something like that, it may settle her pain and temperature. 

Start writing everything down now hun. 

:hang:  Mum, you are doing a fab job! 

Much love, :wub:
Dusty. xxxxxxxx


----------



## MattsMum (Jul 9, 2011)

Dusty she had a dose of Calpol at 6pm and another at 11. Really thought that I would get some sleep at home tonight before heading back to Matt tomorrow. No such luck!
Nic x


----------



## Crohn's Mom (Jul 9, 2011)

Awe Nic, so sorry everything is going wrong at once for you hun!

Does she have any other symptoms besides pain and fever?  Maybe it's just a little bug she picked up going in and out of the hospital to visit ? 

Try to relax and breath mom ! 
Hang in there...
xoxoxox
~T~


----------



## MattsMum (Jul 10, 2011)

Thanks Tracy, she didn't have anything but for a sore tummy on/off for a few days, then last night running a temp and this morning she's been sick. I'm hoping above anything that it is a tummy bug. She can't go in to see Matt today.
Matts symptoms were so different. He never complained, just woke one morning with blood in his stool quickly followed by mouth ulcers. Ella on the other hand seems to be getting different symptoms daily. I must say they do seem real. Last night we had 'real' tears not the tantrum kind. I think we may well find ourselves at the gp's in the morning.
Nic x


----------



## DustyKat (Jul 10, 2011)

Go with your gut Nic, you know Ella better than anyone. 

Take her to the GP and have her checked and hopefully it will turn out to be just a bug. 

I know it's hard not to over think things and then start second guessing yourself. But I always figure it's best to go and have it checked and be told "she is fine" than to sit on and wonder and find it was something after all. If that turns out to be the case you then waste energy kicking yourself for not doing something sooner. 

Any doctor worth a pinch of salt would understand your concerns, fears and worries for Ella when you have the issues you do with Matt. 

Much love, :hug:
Dusty. xxxxxxxx


----------



## Dexky (Jul 10, 2011)

Is Ella having any nausea, diarrhea or constipation?  Has she any appetite?  Sorry, if I missed it somewhere.


----------



## MattsMum (Jul 10, 2011)

No diarrhea at all Mark. Occasional constipation and vomiting this morning. It's hard to get it out of her, or understand her for that mater, but the pain she's describing seems to be a stomach ulcer type pain- how does a 4 year old have stomach ulcers?
GP in the morning for us. She's hardly moved off the sofa all afternoon. No interest in food at all. 
I feel awful that I have to leave her now to go back to the ward to be with Matt. Hubby will have to get time off work in the morning to relieve me there so I can then take Ella to the GP. 1 poorly child's enough, but 2 right now is killing me!! Just how do I cut myself in half? Both need me equaly as much!!
Frustrated...Nic x


----------



## dannysmom (Jul 10, 2011)

So sorry Nicola. I really hope things settle soon .... and the new infusions help Matt.


----------



## Dexky (Jul 11, 2011)

Nicola, you're an amazing mom!  You'll get through it all somehow and both your kids will realize the sacrifices you made for them someday!  I'd like to tell you to take a break, but I know you can't.  I know your love for them is endless, but your time creates a problem. You're doing the best you can mom!!  Take comfort in that!

I believe I saw your hub's name is Dan??  Are either of your parent's nearby or any other close family?


----------



## DustyKat (Jul 11, 2011)

How did Ella go Nic? 

Dusty. xxx


----------



## MattsMum (Jul 11, 2011)

I'm sure my Gp thinks I'm neurotic. Ella has been vomiting since yesterday afternoon, still complaining of tummy ache, and still running a temp. Gp checked her over, said she had some bad ulcers going down her throat and gave her antibiotics. Nothing for the tummy ache, just swept it aside as an attention thing! Maybe I am reading too much into this now. But why has she got throat ulcers- would account for her not wanting to eat, but she's not complaining about her throat. 

Mark, we've recently moved here, just as Matt was diagnosed. Nearest family are about 2 hours away. I have sent out an SOS this morning. Hoping my in laws will be down tomorrow. Ella is unable to go to school whilst vomiting and for 24 hours after. Dan had this morning off but has had to go back to work this afternoon. It's not ideal, but Ella is now here on the ward with Matt and I. 
Can't see this nightmare coming to an end soon.!!
Nic x


----------



## DustyKat (Jul 11, 2011)

Ulcers down her throat!...go to another doc and have it checked it out. I would also want to know what the ulcers are and why! 

Dusty. xxx


----------



## MattsMum (Jul 11, 2011)

I'm tempted to just get Matts IBD nurse to have a look at her when she calls in later.
For now, they're both fast asleep in Matts bed. I'm thinking of going to go  and find one for myself somewhere!
Thanks for all your help
Nic x


----------



## Tesscorm (Jul 11, 2011)

Hi Nic,

OMG, I am so sorry you are having to deal with all this!!!  There is nothing more stressful than being worried about your children!

I would definitely have the nurse have a look at Ella - even after asking the nurse, I would ask the doctor to look at her next time he/she is in to see Matt!!  You already have Ella at the hospital with you, it certainly can't hurt!  They won't refuse to just have a look and if they agree with what you've already been told, it will be a huge relief for you!

YOU WILL GET THROUGH THIS!!  I know it's hard but just take a deep breath and try to focus on one issue at a time, hour by hour (or, sometimes, minute by minute when necessary!).  When my son was in the hospital, in the midst of being test/diagnosed, my daughter was preparing for her grade 12 prom/grad (altho not 'serious' as my son's issues, nonetheless very important to her!).  I felt like I was spinning :ywow: - needing to be with both of them, discuss ultrasound results, alterations for prom dress not going well, prep for colonoscopy, final university acceptance due, nausea/diarrhea (can't even remember if it was his or mine! LOL), prom 'get together' at our house, etc.  All in the same week!!!  I was leaving the hospital, rushing home to pick her up, going to the dress shop, yelling at the saleswomen bcz they, for some unknown reason(???, stupidity perhaps), were not getting the alterations done (explained that my son was in the hospital and I couldn't keep coming back, the saleswoman said 'we all have problems'!!!:voodoo, my daughter's in tears bcz her dress won't be ready, OMG!!!  Had to take the dress without alterations, find another seamstress who could do it in 1.5 days, my husband's trying to tell me not to stress (how could I not?!!!)...   My kids are much older than yours and their understanding of the situation was much greater so that certainly helped!  But, I felt like my life was suddenly and completely 'out of control"!!  But, I kept telling myself it was temporary and I just had to resolve this 'one issue', get through this 'one day', this one week, etc.   I got through truly by just focussing on one issue at a time...  As much as we all wish we could sometimes, there is no way to split in two!

Hopefully, more help is on its way and you will have a chance to catch your breath.   Just keep remembering that this crazy time will pass.  Right now, you're probably feeling that life is 'out of control!', but you WILL get things under control, just stay strong until then!!

Thinking of you!!!...


----------



## christopher's mom (Jul 11, 2011)

HI there I am new to all of this. My son was diagnosed with mild crohns in 2008. He is on pentasa. I get so worried about him. can anyone tell me what happens next. This this disease is scary.


----------



## troydanielbecker (Jul 11, 2011)

Nicola, my goodness, god speed to the best of health for your little ones and some solace to you!

I am curious to hear more of your story.  I'm going to look now to see if you posted more details elsewhere!

@christopher's mom, hello and welcome!  Please start a new thread and tell us more about you and your son.  Crohns varies widely from patient to patient.


----------



## MattsMum (Jul 11, 2011)

Thank you all for taking the time to reply and offer advice and support.

Ella is now at home with dad. We did get see see the IBD nurse today and explained her current symptoms. She said in view of what Matts going through it raises alarm bells and will notify Matts consultant when she sees him, or for us to mention it if we see him first. 
On a brighter note- the cavalry are arriving tomorrow. The in laws are descending for a week to help out. Thank the lord for small miracles!

Hope all is well out there
Nic x


----------



## dannysmom (Jul 11, 2011)

I am very happy to hear your inlaws are coming in to help. What a relief it will be to have extra help. I agree with Tesscorm regarding focusing attention to small units of time (minutes/hours or day by day). It reminds me of 'baby steps' in the movie "What About Bob?".  It is a very useful stress strategy.

 I hope Ella has 'just' a virus or something but really glad the IBD nurse looked and will talk to the consultant. Siblings should get extra investigating when they present with similar GI problems.


----------



## MattsMum (Jul 11, 2011)

Thank you Jeanne, I will breath easier once Matts Gastro has taken a look at her. Hope he confirms I am just being neurotic!
Nic x


----------



## MattsMum (Jul 11, 2011)

Just had some of Matts blood results back (late I know). His CRP is going down!!!
Big smiles...deep breaths!
Nic x


----------



## Dexky (Jul 12, 2011)

Finally some good news for you guys Nic!  I hope things continue to improve for both of them!  I'm glad you've got help on the way


----------



## Crohn's Mom (Jul 12, 2011)

Checking in and wondering how Matt is doing today?
and ...is Ella feeling any better ? 

Hope all is well and your relatives have come in to save the day! 

hugs,
~T~


----------



## MattsMum (Jul 13, 2011)

Hi Tracy, Matt continues to be going from strength to strength thanks. Certainly seems more comfortable and his bloods are reflecting this. His appetites back with a vengence, and his bowel movements are decreasing daily. His mouth seems to be slower in responding, but it's heading in the right direction.
Ella continues to be poorly. Still complaining of a sore belly, but not mentioning her ulcers or sore throat at all. Matts gastro has said that he will see her, but we need a referal from our GP. Hoping to get that done sometime today.

Mark, the in laws are here. Its a relief and lifts a huge weight. She did manage to get a dig in the other night and reduced me to tears. I'm sure it wasn't meant as I took it, BUT asking what I had done to both their diets since we moved and that living in a building site (renovating our new home) wasn't good for either of them, implied that I had caused both Ella and Matts problems. Dan put her right and since she's been nothing short of supportive.

Hope everyones well out there.
Nic x


----------



## Dexky (Jul 13, 2011)

It's certainly forgivable Nicola.  Don't we all ask ourselves the same questions at first?  She just needs to get educated!!  Glad things are continuing to go well with Matt and continuing to pray that Ella's problems are not serious.


----------



## jordan29 (Jul 13, 2011)

I am pleased things are starting to go in the right direction for matt nic and little Ella starts to feel better Jordan keeps asking about matt every day we are sending all our love down to yous from up hear in Newcastle xxx


----------



## Tesscorm (Jul 13, 2011)

So happy for you that Matt is improving!:ybiggrin:  and that his Gastro will be seeing Ella soon (hopefully, she'll be feeling better before she even sees the Gastro!)


----------



## MattsMum (Jul 16, 2011)

Hi all, just checking in.
Things are going well here at the hospital. Matt contiues to improve, so much that we hope to be allowed home on Monday!
Ellas still much the same, but is seeing Matts Gastro in 2 weeks time. So hoping for some answers then. Her throat ulcers don't seem to have cleared- would the antibiotics have helped if this is Crohns?
Hope everyones well out there.
Nic xx


----------



## Dexky (Jul 16, 2011)

That's great news about Matt Nicola!  Did the antibiotics help at all in your opinion?  Is Ella still sick?  Two weeks is going to seem a lifetime if she's sick all that time.


----------



## DustyKat (Jul 16, 2011)

Hey Nic,

Fab news about Matt! Good luck, I hope all continues to go well and full steam ahead for discharge on Monday! 

	
	
		
		
	


	













It depends on the severity of the disease as to whether antibiotics are effective or not. They can be useful in mild to moderate disease but I think this is generally if disease is present further down in the GI tract. Don't quote me on that though! :eek2:

Good luck with the GI's appointment and I hope things are fairly settled in the lead up! Keep us posted! 

Much love, :hug:
Dusty. xxxxxxxx


----------



## MattsMum (Jul 16, 2011)

Mark, she never complained of a sore throat. She is still occasionaly vomiting and still going on about her tummy. She's having frequent bowel movements now, no blood just loose, and running an ad hoc temp! Took her back to our GP yesterday, who just thinks Im still neurotic.!! Two weeks can't come quickly enough!!


----------



## MattsMum (Jul 16, 2011)

Thanks Dusty. Good to have Matt back to something resembling normality. Now just to get Ella sorted.

Hope all the other kiddos out there are doing as well as or better than Matt
Nic x


----------



## dannysmom (Jul 16, 2011)

Glad to hear about Matt.  Ella's symptoms need to be considered seriously. Two weeks is a long time for a 'normal' illness to be still causing symptoms. I am glad you have your GI appointment. Two weeks is not that bad (sometimes it is months here). Your comments about your GP thinking you are neurotic frustrate me so mcuh. (I have been in that situation before many times, once time the doctor thought my older son was suffering from anxiety rather than the CSF leak that his friend caused!) I want to say find another GP ... but that is only if he is really making too light of Ella's symptoms. If he thinks you are over-reacting or something, I could accept that (but I am sure you are not. We parents know how to put up a good front in front of our kids!) . Or I wonder if perhaps he is just trying to focus on the positive to help calm you meanwhile he is taking this very seriously.


----------



## MattsMum (Jul 17, 2011)

Jeanne, Im hoping to that I am just being over cautious!
Its just hard as you know to not worry about everything when it comes to your children. They are so precious and at this age still very demanding and reliant on us.

Matts stools have started to deteriorate again this morning. Back to being watery and frequent. Hoping its just a passing issue and wont prevent us from going home tomorrow.:yfrown:

Nic x


----------



## Dexky (Jul 17, 2011)

Oh no Nicola!  Fingers crossed you guys can get outta there!


----------



## MattsMum (Jul 17, 2011)

Well it would seem we are destined to remain here for a few more days.
Matts CRP has started to rise again, and his frequent loose stools are now showing blood. The lil man is back to being fractious and sleepy, much like when he was admitted. Praying its a blip, hoping more than anything that tomorrow brings better news.:yfrown:
Nic x


----------



## Dexky (Jul 17, 2011)

Sorry Nic!!  There's an answer somewhere, just a little more time!  Good luck!


----------



## AZMOM (Jul 17, 2011)

Nic I'm late weighing in here but just wanted to say hang in there.....  I'll be thinking of you and your little ones and hoping for good things for you all. 

Just so you know - you are NOT the only one with the barb throwing m-I-l either. We'll make that another thread. 

Hugs,

Julie


----------



## DustyKat (Jul 18, 2011)

Oh man Nic, that sucks! 

Hells bells it was bad with a 17 year old in hospital and being told you can't go home let alone a little 'un! Yikes! I reckon you need one of these...:ghug:

So what are the docs saying/planning? 

Much love mate, :Karl:
Dusty. xxxxxxxx


----------



## MattsMum (Jul 18, 2011)

Well we have just been told we are to remain here. No discharge today. 
Matthews CRP is up again. Just waiting on his gastro now to call and advise as to the plan of action.
For me, I just wish my poor baby didnt have this damn disease. Why couldn't I have been the one to have it? He's been through so much more in his 3 years  than I have ever been through. It's grossly unfair!!!!:voodoo:
Nic xx


----------



## Dexky (Jul 18, 2011)

Sorry Nic!!  We've all been there^^^, in fact, that's where we live isn't it!!??


----------



## MattsMum (Jul 18, 2011)

Well Matts gastro has been. Matts CRP is up to 187 today. His next Infliximab infusion is due Friday but we are hoping to have it brough forward to Weds. He responded really well to the 1st infusion, so praying this will do the same.
Must say though, it is worrying that 10 days after Infliximab it all seems to be going haywire. I hope this isn't the pattern we will follow this time round.

My in laws are due to leave tomorrow. Im greatful for what they've done, but she cant help herself but give the occasional dig! Will be removing the knives from my back for weeks to come!
 Ella still hasnt returned to school, so for the next few days, she will be spending her days here with us. 
This has to end soon!!
Nic xx


----------



## Tesscorm (Jul 18, 2011)

Hey Nic,

So sorry to hear about Matt's setback.  I'm really hoping he responds well to his second infusion!!

So sorry to hear about the 'knives' as well...  it's hard enough to deal with all of our worries when our children are sick, no one needs extra 'digs'.  And I very much doubt you deserve them, you sound like a great mom who's doing everything possible (and beyond)!  Deep down, I'm sure you KNOW this - remember it and just ignore the rest!

Will be thinking of all of you!


----------



## Max's Mom (Jul 18, 2011)

Hi, Nic! I hope things will turn around soon for all of you.I wouldn't wish this disease on my worst enemy.It is the disease from hell. But my son (11 now and on Remicade) is living proof that you can get better and live a normal life. Stay strong and keep fighting! My mother blamed me a lot in the beginning. "It's because you gave him those colored popsicles or yoghurt that was super purple". That is the last thing us Crohn's parents need to hear.I'll be here along with these other concerned parents waiting for some good news.


----------



## MattsMum (Jul 19, 2011)

Thank you both, your support is appreciated.
Today we had a long chat with Matts gastro about the merits of further Infliximab over a resection. Tomorrow he'll have an MRI and if its still showing considerable inflammtion then as much as I dont want to do it, maybe surgery will be the best option. Once the diseased area has been removed, maybe we can start to build him up again.
Ella, also continues to be going downhill. Returned to our gp this morning. Advised him I may be protective and anxious given Matts current condition BUT I am certainly not neurotic. I know her, and I know she is not well. He took some blood and we should have the results in the morning.
The in laws have returned home, so for now we're back to shifts here at the hospital. Ella has only this week in school before the Summer hols. She wont be attending. This 6 week holiday is destined to be the longest ever...

(Just hoping Andrea's well enough soon so that I can go sit with her and have an adult conversation)

Hope everyone out there is keeping well.
Nic xx


----------



## Dexky (Jul 19, 2011)

Is this only his second Infl. injection?  Do you or the docs think it should have had an effect on the inflammation this quickly?  I don't know much about it, just curious.  I'm sure it's a tough decision especially for one so young.  You're doing everything possible mom!!  Hang in there!


----------



## vness1208 (Jul 19, 2011)

aww sorry to hear that, this must be so hard for you at such a young age.. best wishes go out to you and your family. good luck.


----------



## MattsMum (Jul 20, 2011)

Thank you Vness.

Mark, I think they're main concern is that he did improve after his first infusion but went downhill quickly again. 2nd one's due Friday and the 3rd one a month later. Should we have the same reaction this time, then we've compromised his immune system even more before surgery.
I hate to say it, but maybe removing the diseased section will be for the best. Will know more after his MRI later. Just hoping it wont lead to an Ileostomy. 

Just waiting on Gp's to open to get Ellas results. The angels sat here with us doodling away. She seems quite comfortable right now. Hope its a good sign!!
Nic xx


----------



## Dexky (Jul 20, 2011)

You've got a lot to think about!  I hope the MRI is good news, let us know Nic!


----------



## MattsMum (Jul 20, 2011)

Ellas CRP has come back at 78 (not sure if this is high?). The receptionist told us the gp didnt want to see her as she has a Gastro apt on Aug 3rd. Hope we can hang on until then.

I really have had enough now. I hate this darn disease, and we've only known it for 7 months !!
An emotional but not neurotic Nic x


----------



## Dexky (Jul 20, 2011)

Well, we've only known it for 1.5 years but EJ's never had to be in hospital even one night!!  You have every right to be sick of it Nic!!  

You can check her blood values in the forum wiki.  Dr. Dusty...who else!


----------



## MattsMum (Jul 20, 2011)

Thank you Mark. Just one of those days I think. Will feel better once the MRI has been done.
Off to check out Wiki....
Nic x


----------



## DustyKat (Jul 20, 2011)

Hey Nic,

Oh man, you sure have your hands full at present...

Good luck with Matt's MRI hun. I hope all goes well, I will be thinking about you! 

I guess you have been onto the wiki so you know that the CRP is a high reading. 

Oh boy, so know the way you are feeling mate. Sending loads of hugs and healing thoughts your way......:hug::hug::hug:

Much love, :Karl:
Dusty. xxxxxxxx


----------



## dannysmom (Jul 20, 2011)

Hi Nic - 
Good luck with your tough decisions. Did the receptionist give you the CRP number? (Usually only doctors or nurses can give you any results so they can tell you right then if it is high or low.) Now that Ella supposedly has a high CRP, waiting the 2 weeks for the GI while you are right in the hospital with Ella is sooooo frustrating. Can you ask a nurse or the GI if you could take Ella through emergency so she can be admitted into the same room as Matt and tested?


----------



## Crohn's Mom (Jul 20, 2011)

Hey Nic,

Just thinking about you all 
Hoping that the MRI was done successfully and uneventfully.  It's probably hard on the little guy to lay still that long.  Do they sedate him before hand ?

Hang in there...I know it's hard ! 
big hugs !
~T~


----------



## Dexky (Jul 20, 2011)

Wow, good question T!  I hadn't really thought of that!


----------



## MattsMum (Jul 21, 2011)

Thanks all. We are meeting with our Gastro and Colorectal surgeon later. No decision has been made yet. 2nd infusion due tomorrow.

Tracy- they gave him some Phenergan and Calpol. Slept through it all!
Nic x


----------



## MattsMum (Jul 22, 2011)

Hi all. We came to the decision to try a 2nd dose of Infliximab. I feel relieved to know that they won't be chopping up my baby, but do realsie that should this not work, then surgery is our only option.
Matt will have his infusion later this afternoon.
Ella continues to be spending all day everyday here with us, but goes home with dad at night. She seems to be holding her own, and is not complaining of so much tummy ache. So maybe things are heading in the right direction for her- hope so anyway.

Hope everyones well out there in the real world- think I've become institutionalised now. 4 weeks here is 4 too long !! lol
Nic x


----------



## jordan29 (Jul 22, 2011)

Hope this one works for little matt nic fingers crossed xx


----------



## dannysmom (Jul 22, 2011)

I hope this goes well for Matt. Sounds like you are in a very good hospital with a good plan. 4 weeks is looooong! I am glad Ella may be feeling a bit better and she is accepting her routine (as she gets to be with you all day


----------



## troydanielbecker (Jul 22, 2011)

Our thoughts and prayers are with you!


----------



## Max's Mom (Jul 22, 2011)

Hi, Nic! I hope things are going ok at the hospital. I'm glad the docs are giving Remi another go. I hope it will work. It sounds like your doctors know what they're doing. I really feel for your little guy having to go through all this.


----------



## DustyKat (Jul 22, 2011)

Oh Nic, everything, and I mean everything is crossed for Matt! I so hope all went well with the infusion. 

Sending MEGA loads of love and healing thoughts to Matt, Ella and Mum! :ghug:

Thinking of you guys, :Karl:
Dusty. xxxxxxxx


----------



## Dexky (Jul 22, 2011)

I'm sure it's all over now Nic, but I hope it brings good news!


----------



## jordan29 (Jul 23, 2011)

Hi nic hope everything went ok with little matt on Friday xx


----------



## MattsMum (Jul 24, 2011)

Thanks all for the well wishes.
Matt had his second infusion on Friday afternoon, by the evening he was almost covered head to toe in a rash. No more Infliximab for him. Surgery now is our option. Second guessing if we should have just gone this route rather than taking another infusion? The lil guy just seems so sorry for himself. His  rash is improving and his temperature coming down, but for a few hours- well they were the scariest ever. I never want to go through that again, made worse that Ella was here when he started to deteriorate. Thankfully a nurse took her away to play for a while.
Now its just a mater of deciding when to operate.
Sorry I havent updated before now. Mind really has been elsewhere.
Hope all is good out in the real world.
Nic xx


----------



## Dexky (Jul 24, 2011)

Ugh, sorry Nic!!  Did they use benadryl?  I hope he's still improving.  I know, no one wants to think about surgery on a 3 yr old but it will give him his childhood back!

How is Ella doing now?


----------



## MattsMum (Jul 24, 2011)

Hi Mark. They used Phenergan another antihistamine. He had no problems during the infusion, they started not long after it finished. His breathing was eratic, sweating, and alarms just went crazy. Ella became distressed and all hell broke out.
Ella sees the Gastro this week. Having her bloods done tomorrow to check on her CRP again. She seems much the same, no better or no worse, thankfully.

Dan's taken a weeks leave now to help out. I never thought I would say I'm so tired of this place, the worry and bloody Crohns. Sorry:voodoo:
Nic x


----------



## Dexky (Jul 24, 2011)

MattsMum said:


> I never thought I would say I'm so tired of this place, the worry and bloody Crohns. Sorry:voodoo:
> Nic x


I'd have been saying that after an hour!!  You're my hero...and Matt's and Ella's too, I have no doubt


----------



## Grumbletum (Jul 24, 2011)

:hug: Poor you, what a horrible scare. Must have been so frightening for you all. So sorry about the reaction to the infusion. I think I would have gone for it too to try to avoid surgery for the wee one.
Hope he's feeling a bit better now. Hang on in there.


----------



## Crohn's Mom (Jul 24, 2011)

So sorry to hear this Nic, but I agree with Mark, it will give him his childhood back and you your family back! 
Hang in there, it's going to be ok! 

xoxoxox
~T~


----------



## dannysmom (Jul 24, 2011)

Too scarey. Glad the reaction is better now. (I wonder why Remicade is still used if it causes more allergic reactions than Humira?) I pray this surgery will be the last hurdle for you and Matt (for a very long time at least) Hang in there!!!!


----------



## Max's Mom (Jul 24, 2011)

I'm so sorry to hear all this horrible stuff. My other son had a bad case of hives a while back,also head to toe,from what,we don't know,so I know that can be scary.And Max had a seizure 2 years ago where we thougt we were going to lose him,so I know what you are going through. I can tell you are are a great mom.You"ll see,things will work out. We're thinking about you all.Cecilia


----------



## DustyKat (Jul 24, 2011)

Oh Nic...(((HUGS)))

How awful for Matt, Ella and yourself. I hear you about the second guessing but I would have tried the less invasive route too if given the choice. If I didn't I would be left wondering after surgery what if I tried Remicade! Argh, damned if you, damned if you don't! Sending Matt mega loads of (((hugs))) and (((healing thoughts))).

I hope all goes well with Ella's appointment...good luck hun. :goodluck:

:hang:   Mum! You are doing a fab job! 

Thinking of you and your little 'uns, :ghug:
Dusty. xxxxxxxx


----------



## troydanielbecker (Jul 24, 2011)

Nicola, same sentiments as above.  

Best,


----------



## Max's Mom (Jul 24, 2011)

Nic,did your doctor ever consider the enteral,or liquid diet or tube feeding to let the intestines relax?


----------



## Tesscorm (Jul 24, 2011)

Ni Nic, I'm so sorry to hear Matt's infusion did not go well.  But, don't go second guessing yourself!  As you did, without a doubt I would have tried the less invasive Infliximab once more before moving deciding on surgery.

For what's it's worth, my son did the enteral therapy and responded quite well, however, his symptoms were different from Matt's.  But certainly can't hurt to ask Matt's doctor...???

Hoping that Matt begins to feel a bit better, as well as Ella!!

I'll be thinking of you!


----------



## jordan29 (Jul 25, 2011)

Hi nic so sorry things didn't go well with little matts infusion stay strong Hun and never doubt what way you are going to get little matt better again nic I would of done the same as you hope every thing goes ok with Ella xxx


----------



## MattsMum (Jul 27, 2011)

Hi all, so sorry for not having been on to update these past few days. Just feeling very down and anxious right now. Thank god for Dan being off this week.

Matts CRP has continued to raise, all be it slowly, since his second infusion. It has been decided that he will undergo surgery on Friday. They will do what they need in order to get the little man back to good health. Praying he comes out of it without an Ileoostomy, but no guarantees.

Ella's CRP has also raised to +100. We saw the gastro yesterday in outpatients to discuss her condition. He seems to think that she too may have some form of IBD. She will have both an upper and lower scope under GA next Monday. I'll spend the weekend at home (Dan here) to help with the prep. Poor love. I'm even thinking of taking some myself just to be with her and feel her pain!

I feel so damn guilty for inflicting 2 children with this bloody disease. We're still trying to figure out a trigger point and all we can come up with is that we went to Egypt on holiday last November- we ALL had a bad tummy on return. Neither of them have ever properly recovered. They've been tested for C Diff, and any other bacterial infections, and they have all come back clear. Could they have been carrying this all along and that the tummy bug just set it off? Gastro is non commitant to give any definitive answers with regards this.
I cant sleep for worrying. Its never out of my head that my children have to be burdened with this damn disease for the rest of their lives. Both Dan and I had good/normal childhoods- will this be robbed from my kids? So many questions and no proper answers.

I'm sorry for complaining away. This is probably why I've resisted posting in a few days.I just want to wake up one morning to find this has been a BIG bloody nightmare!
Nic xx


----------



## Dexky (Jul 27, 2011)

Nic!!  You can't inflict your children with IBD!!  We all have gone through the self blame game...trust me!  Nothing you did or fed your children caused this!  The docs will get them sorted soon and their childhoods, though forever altered, will be good.  You'll see!

I know this weekend is going to be especially hard on you!  Having to leave Matt so soon after his surgery and convincing a toddler to drink that nasty prep...ughhhh!!  We're all here for you mom!  Hang in there!  There's light at the end of this tunnel!!


----------



## MattsMum (Jul 27, 2011)

Thanks Mark, its hard not to second guess EVERYTHING we've done/eaten differently in the past 7-8 months.
Nic xx


----------



## dannysmom (Jul 27, 2011)

Oh Nic. You can't blame your self, but I know the feeling. My son became ill after getting his stainless steel orthodontal braces. His teeth weren't even that bad at all. But it seems that every kid in US gets braces. We removed them after a few months and he started to improve. After another few months he was even totally symptom free for 10 days (August 2009) ... then we had titanium braces put on. The very next morning he started to complain. He also caught a cold. Went downhill quickly and has not recovered yet. I still feel guilty about the braces.  My teeth are crooked as are my husbands. The braces definitely helped trigger something, somehow. (I also beat myself up over the other potential 'triggers' like the prophylactic antibiotic he took when his brother had meningitis, or the Boy Scout camping he went on where he came home sick) I think you just have to accept that you cannot simply keep your kids in a bubble their whole lives, and as parents you always try to make the best decisions you can make at the time.

Doctor's do not really understand how every case unfolds, but there is a genetic tendency and there could be so many different triggers.

I am sure that Matt's surgery will help him. I am glad that Ella is seeing the same doctor. Praying for you all. (I do not recommend the fast with Ella, you need your energy, and you are suffering as much as you children are)


----------



## Tesscorm (Jul 27, 2011)

Oh Nic, I am so sorry that you are going through such a very tough time!  Just a little longer and things WILL start to improve!  Just keeping reminding yourself that Matt and Ella are on the road to treatment and recovery.

As everyone has said, you can't blame yourself.  My son was diagnosed this spring and I am sure that his trigger was all the ibuprofens (on doctor's advise) he took over the winter to relieve back pain from hockey.  I think back and wonder why didn't I ever think that it was too many ibuprofens, why didn't I send him for more back massages, why didn't I just keep him from a few games or hockey altogether???  But, his GI has said that if it wasn't the ibuprofen, eventually, it would have been something else...  

I just want to share something that may help the parents of young children here...   when I was between 5 and 7 years old, I was diagnosed with juvenile osteoporosis.  Its very rare (at the time, the children's hospital in Toronto had only had 9 cases in its history) and it took a long time before the diagnosis was made.  During those years, I was in the hospital for weeks, if not months and, at that time, parents were only allowed to 'visit', no 24/7 attendance.  Often on my own, I was poked and prodded by countless doctors from countless departments and some of the pokes and prods were painful.  Prior to the accurate diagnosis, errors were made in treatment - 'it's all in her head, she wants attention' was one diagnosis - off to the psychiatrist I went (no help), another treatment worsened the condition (or allowed the condition to worsen) to the point that I could no longer walk at all, one nurse decided to take matters into her own hands and, after an excursion with some patients to the hospital's yard, declared that I could 'walk on my own if I really wanted' and left me outside alone.  I suppose she forgot about me and it wasn't until my mom arrived hours later that I was found, terribly thirsty and sunburnt.  I was eventually diagnosed and treated, altho it did take a few years for my body to completely rebuild the bone density and muscle lost over the years.  BUT, with all that, my memories of my childhood are only HAPPY ones!!!   I've never remembered the the painful pokes and prods as being any more 'traumatic' than when I fell and required stitches as a teen.  I may not have the same memories of being 5-7 years as the typical person, however, I remember attending shows and events at the hospital that my friends at home couldn't attend, my memories include hospital playrooms filled with every toy imaginable and doctor's visits being no more than 'interruptions' to my time in the playroom.  I remember feeling special because so many people always came to visit (and brought gifts! LOL).  I remember numerous follow-up visits to the hospital as an outpatient but I remember that each time we went into the city for an apptmt, my parents would take me for an ice cream or just a walk downtown (exciting for a 7 year old!).  Even after spending two years seeing doctors, not being able to walk, not being able to attend school very regularly, taking medications or treatments I didn't like, these memories did not replace HAPPY memories, they are just part of my childhood just like losing a childhood pet (certainly an unhappy memory but not overshadowing all the happy ones).

I hope this alleviates a little of your concern that your child will not have a 'good' childhood.  I was fortunate that my condition eventually led to a full recovery, however, my childhood was filled with hospitals, doctors, needles and, as far as I'm concerned, it was still all good!


----------



## Welsh-bird (Jul 27, 2011)

Hi Nic, Glad to see you made your way here!
I'm stuck on MDU right now, but will try and pop in on my way outta here!
Hang on in there hun- your doing a fab job.
And xx


----------



## DustyKat (Jul 27, 2011)

I'm so sorry to hear about Matt hun but hopefully this will be the turning point for him, as it was for my children, and you will have your happy little boy back! It is Friday here now and I will be thinking of you all as the day progresses and holding very special thoughts and wishes in my heart for a wonderful outcome. 

And little Ella...I so hope all goes well for her too. What a very, very difficult time for you Nic and Dan. My heart goes out to you both, I know it's the last thing you are thinking of but your little 'uns are so very blessed to have such a wonderful, caring and compassionate Mum and Dad...:hug:

I know our circumstances are very different but I have spent many years now trying to find sensibility in all that has happened to my children. My husband has a first cousin with CD but that it is it, no other link. I looked to their upbringing and to outside factors. Neither had antibiotics until diagnosed, one had braces one didn't, one was mad about sport one wasn't, one had Asthma one didn't, one loved fruit one didn't...on and on it went until I couldn't find any more similarities or differences and still I had no answers, no common denominator apart from the most obvious, they are brother and sister, related. 
In our case I have had to accept that it is genetic and nothing I or anyone else did or didn't do could have prevented it, it was that or lose my sanity. Trigger or no trigger they are predisposed to developing it. I have had time on my side though Nic and it did take me quite a while to reach the place I am now. It doesn't make it easier knowing it and I still have my black dog days but they do get fewer and farther apart. I guess I will have them for the rest of my life but that's okay, there's a good reason and why shouldn't I get thoroughly pissed off the world every now and then for the hand they been have dealt. :lol:

It is early days hun, don't be hard on yourself for the emotions you feel. They are raw, normal and natural. Just know we are here for you every step of the way and that we understand. 

Lots of love, :wub:
Dusty. xxxxxxxx


----------



## vness1208 (Jul 27, 2011)

I think we probably all have drove ourselves crazy trying to figure out why this had to happen to our kids but it doesnt help the situation because there are still no answers. my daughter is the only one in our family to have crohns & Ive beaten myself up trying to figure out what I did wrong, but now I realize that doing that wont fix anything. I know this is hard for you but you are doing a great job holding it together & matt is lucky to have you as his mom. we are all here for support so dont worry if you need to complain then go right ahead and let it out, I feel your pain and weve all been there. Best of luck, stay strong & positive.


----------



## Max's Mom (Jul 27, 2011)

Tesscorm,thank you for sharing your story.It was very inspiring.Cecilia.


----------



## Max's Mom (Jul 27, 2011)

Mattsmum.Yes,we have all been there,blaming ourselves and trying to figure it all out. Time will heal all wounds,physical and mental.After a while you just come to accept it.I would change place with my son in a second if I only could,as I know all the other parents out there would too.You just keep going,that's all. Good luck on Friday and we'll be thinking about you all.


----------



## AZMOM (Jul 28, 2011)

Well said, Dusty, as usual.

Hang in there dear.......These feelings are definitely normal and Definitely shared!!!!

J.


----------



## MattsMum (Jul 28, 2011)

Thank you all so much- it's good to know I'm not the only one who feels like this. I was starting to think that there was something wrong with me. Dan is so level headed and more composed than I. Just wish I had his strength.

Matt has started his prep for tomorrow. He's first on the list and is heading to surgery at around 8.30am. We're still unsure of what will be done, but have confidence in his surgeon that he will try as much as possible to avoid an Ileostomy. If needs be, and it means Matt gets his quality of life back, then we will deal with it. We have to for his sake!!
Ella's sore tummy still appears to be giving her a few issues. She's still not complaining of a sore throat or mouth, so thats good news. For the past hour she's been sat on Andrea's bed reading to her (thanks And x). It's given Dan and I a bit of a break to concentrate on Matt and his prep, while she has someone else's undivided attention and seems to be thriving on it..Ella that is, Andrea looks exhausted!!!

Can't wait to get this weekend and Monday over and done with. I'm sure it's going to be long, and I have a feeling I'll be checking in loads whilst waiting for Matt to come out of surgery. Isn't the waiting just the bloody pits! I'm sat here wishing mine and my childrens lives away- seems wrong somehow!
Thank you again for your support.
Nic, Dan, Matt and Ella xxx


----------



## Crohn's Mom (Jul 28, 2011)

Nic I wish you all nothing but the very best in his surgery !:Karl:

I know how hard the waiting and not knowing the outcome is all too well.  My thoughts and heart will be with you tomorrow !
And how very sweet of And to hang out with Ella ! I bet they're both enjoying it so much, and what a nice distraction for them both! Send some big squishy hugs to Andrea from me (and yourself as well)

Hang in there and don't forget to breath!!  We're here ! 
I will be watching in anticipation for your updates 

much love and strength !
xoxooxox
~T~


----------



## DustyKat (Jul 28, 2011)

Hey Nic,

Hoping so much that all goes well for your little 'uns over the next few days. 

I have wished so many days away with my two that I have lost count! and yes! the waiting sucks big time! 

Sending mega loads of (((HUGS))) and (((HEALING THOUGHTS))) to all...

:hug::ghug::hug::ghug::hug::ghug::hug::ghug::hug:

Much love, :wub:
Dusty. xxxxxxxx


----------



## Tesscorm (Jul 28, 2011)

Thinking of you all and praying for the best outcome!!


----------



## Dexky (Jul 29, 2011)

Bless your heart Nic!!  I'll be thinking about you all today!  I'm looking forward to good news


----------



## MattsMum (Jul 29, 2011)

Gosh, is it me, or is today the longest ever...?
Matt went down for surgery at 8.20, no news yet. Waiting, hoping, praying.
Nic xx


----------



## DustyKat (Jul 29, 2011)

No it's not you hun, the waiting is so hard...:hug:

When my Matt had surgery it took about 4 hours and it seemed like it was forever, I could have sworn the clock had stopped! Waiting here with you mate with everything crossed. 

Loads of love and hugs...:wub:
Dusty. xxxxxxxx


----------



## MattsMum (Jul 29, 2011)

Thanks Dusty. Roll on next week!!
Nic xx


----------



## DustyKat (Jul 29, 2011)

Amen to that Nic! 

Dusty. xxx


----------



## dannysmom (Jul 29, 2011)

Praying for Matt right now.


----------



## Crohn's Mom (Jul 29, 2011)

just stopping in and letting you know I am thinking of you and your lil Matt. 
I know this is probably the hardest day of your life...my heart is with you!
I know I will come back here later and see all the best news ever !!

much love!! and gentle hugs!
~T~


----------



## DustyKat (Jul 29, 2011)

Thinking of you and Matt...:hug: 

Much love, :Karl:
Dusty. xxxxxxxx


----------



## jordan29 (Jul 29, 2011)

Just to let you no noc we are thinking of you's been praying every thing has gone ok for little matt love Linda Mick and Jordan xx


----------



## MattsMum (Jul 29, 2011)

Hi all. Thanks so much for the thoughts.
Matts back on the ward... With an Ileostomy. 
Sorry for my poor language, but this fucking stinks!!!
He spent a  few hours just 2 beds away from Andrea, heart breaking for us to come back to the ward and leave her there!
I dont know how we cope- just know we have no choice!!
I hope this isnt Ella's future.
I feel broken...
Nic xxx


----------



## dannysmom (Jul 29, 2011)

(((Hugs)))


----------



## vness1208 (Jul 29, 2011)

when you feel like giving up, just remember the reason you held on so long in the first place. so stick to the fight when your hardest hit, its when things seem the worst that you must not quit. my thoughts and prayers are with you


----------



## DustyKat (Jul 29, 2011)

Oh my Nic, my heart goes out to you and Dan...:hug: 

I felt when you hadn't posted sooner that this would be the outcome and yes, it does fucking stink. I hope and pray that despite what seems such an awful outcome now that you now find yourself with a little boy that will be able to enjoy life to fullest. One that will be able to go outside and play without a worry, eat like you haven't seen in quite a while no doubt and most of all you won't see the pain in his eyes. I know it is too early and too raw to think of these things, that you are only takings things hour by hour...:hug:

I feel your fear your Ella Nic, we are here beside you hun, every step of the way.

Sending all my love and healing thoughts to you all, :Karl:
Dusty. xxxxxxxx


----------



## MattsMum (Jul 29, 2011)

Dusty this whole f'ing disease stinks!
Matthews still asleep, Ellas at home with Dan, starting her prep tomorrow. We've gone from being an average 2.4 children family to this in 8 months.
I wish I could take this all away from them both. I dont know how we cope tomorrow, let alone Monday when Ellas scoped?
I cant see another baby go through this crap!!!
Nic xx


----------



## DustyKat (Jul 29, 2011)

I hear you hun, on all counts. 

You *will* cope Nic, they are your babies and you would lay down your life for them. I know the next few days are insurmountable to you now but you will make it, you don't know how you will but your unrelenting love, your need to protect them and the place they forever have in your heart will see you through, it truly will. 

I know you can't be in two places at once but your love, thoughts, prayers and wishes can be. You carry them in your heart and soul Nic and physical separation can't change that. 

I'm right beside you Nic, as we all are, holding your hand and holding your heart. 
Dusty. xxxxxxxx


----------



## Dexky (Jul 29, 2011)

Oh Nic, I'm so sorry!!  I know it's very raw right now but do they think it's temporary?


----------



## Tesscorm (Jul 29, 2011)

Nic, I'm heartbroken hearing that your family is going through such tough, tough times.   I know it seems surreal and you don't know how you will cope and accept but, you will!  You will do it for Matt and Ella; you and Dan will be there for them and we are all here for you.  Know that you are all in my thoughts and prayers.


----------



## MattsMum (Jul 30, 2011)

What a long night!! To say I'm tired would be the biggest understatement.
Matt had what they would call a 'comfortable' night. I saw NO comfort in it at all. He would wake and pull at any/every tube attached to him. He hates them. Dont think he's noticed the Ileo as much as the drain and catheter. He looks so sad and sorry for himself, and I cant for one bloody second say I blame him.
My parents arrive this morning to lighten our load. Ella's prep starts at 8am tomorrow. Dan will be there for the 1st dose and then I will head home tomorrow afternoon for the 2nd and Dan will have to be here for Matt. Dan says she's asking after Matty, but I really dont want her in here seeing him like this, this weekend. We'll keep her away. 

Right now I feel so damn angry and p'd off at the world. I can hear Andrea saying 'I must get a bloody grip' and I'm thinking the same. My babies need me to be strong. It's the very least I can do.
I'm sorry for becoming a miserable cow. I'm just finding it hard to see light at the end of this tunnel after 6 weeks here...and counting!
Nic xx


----------



## DustyKat (Jul 30, 2011)

You will be strong when you need to be Nic...:hug:

I'm glad to read that your Mum and Dad are coming to help, it is such an awful time for you all. 

I think you are making the right decision with Ella hun. Sarah had already been through the same procedure Matt had in April but I still think in many ways it upset and scared her to see him like that and she is 19 and no wus! 

:hang:  Nic. You are doing an amazing job! 

Thinking of you, always, :Karl:
Dusty. xxxxxxxx


----------



## Dexky (Jul 30, 2011)

Nic, I recently spoke with Tannersmom(Marsha) about her son Tanner.  He's a few years older than Matt but also recently got a stoma.  He was in a bad way last fall but Marsha was all smiles with how well he's doing now.  He'll be attending public school this fall.  I know it's going to take some time but you and Matt will get this down to routine and he's going to feel so much better.  It's easy for me to say, we haven't dealt with anything of this magnitude.  You're an amazing mother Nic!  With your help, Matt and Ella can only thrive!


----------



## dannysmom (Jul 30, 2011)

So happy to hear your mom and dad are coming. I think they will really help you ... a real shoulder to cry upon. Hospital 'comfortable' is so different than real comfortable!


----------



## MattsMum (Jul 31, 2011)

Why do I feel we are no further forward today than we were Friday?
Matts really not well at all. Running a temp and has really high output. Just hoping it's not down to infection.
Ella's had her 1st dose of prep today, and Dan said it's cost a bloody fortune in bribes to get it down her! The last one was a trip to Euro Disney when they're both well- Dads obviously softer than mum!!
I have a suspicion that tomorrow Ella will be diagnosed with this horrid disease too. I'm not wishing it upon her- but I just cant allow myself to think good right now. Its all too raw. 
Thanks for letting me rant away here.
Love to all, 
Nic xx


----------



## DustyKat (Jul 31, 2011)

Oh Nic...(((HUGS :hug))

I so hope things settle for Matt and soon! Poor little love. 

I know those feelings of fear and dread all too well hun. I am thinking of you Nic and wishing nothing but the best for your babies. 

Sending loads of luck to Ella for her scope tomorrow. She will be in my thoughts hun. 

All my love, :ghug:
Dusty. xxxxxxxx


----------



## Crohn's Mom (Jul 31, 2011)

Nic I am so sorry to hear all of this...I have wanted to get back to you sooner, but I was out of commission for a day or so.
Honey, I know it seems like the end of the world right now and things won't get better... but they will!  I remember what it was like when Gab came out of surgery with an ileostomy.  No, she's not 3 years old and can now take care of it herself, but I believe the emotions and the grieving at the loss of our babies innocence and childhood is the same none the less.
It is frightening and scary and you probably feel like there's no way you can handle this; and then add Ella's illness on top of it and you're going to explode.  Do you have someone you can call and just scream to ??  I didn't think I did, and then directly after her surgery, I called a friend whom I hadn't spoken to in years. She has CD and I knew somehow she would just understand the emotions I was feeling.  I screamed (literally), cried and cried, said how f'ing unfair this all is.. for Gab as well as me!  I felt so selfish while it was all coming out of my mouth...but you know what...it helped! It helped more than I ever could have dreamed it would.  And she listened, and listened, and listened...to me...for probably an hour straight.  I was able to pick my pathetic self up after that phone call and take a deep breath and dive in head first to now take care of my little girl.  It was pretty rough the first month, I won't lie..but we got through it through much trial and experimentation.  
Yes, it will be a bit harder for you with him being only 3.  Or maybe it won't.  He doesn't have the "body image" issues to go along with all of this right now. He, once he is feeling better...and he WILL FEEL BETTER, will probably think it's really neat, and so will Ella.  These kids are amazingly resilient, you will see, I promise.  It's usually us, the mommies, that carry the burden of worry long after they are off living their lives, unaffected it seems.

I so hope that Ella doesn't have this nightmare of a disease either, but if she does, you can handle it.  Just think of it as getting it all out of the way at once??  Two birds with one stone right.  Then when they are both running and playing and laughing, you can have some relief.
I am glad your parents are coming to help. You really do need all the support and love around you that is possible right now.  Don't fight it and try to play super-mom..it won't work.  Accept all and any help that is offered up to you while the getting is good.  Take it from a pro who had none and no one!

If there is anything I can do please let me know.  PM me anytime.  I can try my best to help you with the ileo.  It's a bit different trying to change it on another person, then it is on yourself, and I have learned a few tricks along the way trying and learning  not to mess it up (which I did that a few times too).  We made it through, and I know you will too!!

much love and hugs,
~T~
:ghug::ghug::ghug:


----------



## MattsMum (Jul 31, 2011)

Thanks both so much.
I'm sure this would be so much easier if I didn't feel so bloody tired. Im in my own bed tonight, but doubt it wont be a restful night, with Ella preping and my mind in a spin for tomorrow.
It's Matts 3rd birthday this week too. I had been hoping we would have been home having a nice family day...we'll make it up to them at Disney, but its not the same!
He's still hating all the drains etc. It's easier to keep him lightly sedated right now to avoid him pulling on them. I hate it...I hate this disease more than anything. Wouldn't wish it on my worse enemy!
Nic x


----------



## DustyKat (Jul 31, 2011)

We understand Nic and we're here whenever you need us...:hug::hug::hug:

Thinking of you, always,
Dusty. xxxxxxxx


----------



## Dexky (Jul 31, 2011)

Right there with you Nic!!  I hope Matt's starting to come around and the prep is going well for Ella.  I'm sure you're near passing out from exhaustion!!


----------



## DustyKat (Jul 31, 2011)

:hang:  Nic. It will all be okay, it truly will...:hug: 

Dusty. xxxxxxxx


----------



## dannysmom (Jul 31, 2011)

Thinking of you too Nic. I hope each day gets better. Disney will be wonderful! I am so glad we have this parent forum. Dusty, Tracy and Mark are so helpful!!


----------



## Max's Mom (Jul 31, 2011)

Nic! We're thinking about you here,too. You are at the bottom right now ,so things can only get better.Kids are so tough and maybe it's good that Matt is young and he won't remember all this.I know you just want him to feel good if only for a day. That day will come, and then another day and another day.And you have a right to feel angry about all this,don't feel bad about that.Good luck tomorrow.Cecilia


----------



## Brian'sMom (Jul 31, 2011)

Nic, I'm praying hard for Matt and Ella...and you and Dan. It's hard to be strong when you are so tired and scared out of your wits. The doctors are going to get to a point where their treatment is helping Matt. Try to keep that in your heart. Everyone is so individual and what works for one kid doesn't for the next kid. They will figure it out. 

I came in late of the triggers blame thing...I think every parent tries to think back on what caused their baby to get this. My son had bronchitis (spelling?) our local small town doc (not our pediatrician- cause I didn't have time to drive in town that day) prescribed him an antibiotic. It was told to me later by our pediatrician that it was a harsh one. That antibiotic tasted horrible...he was only 5 and would cry and cry..."NOOOO I don't want it". We'd make him... even hold him still and squirt it in his mouth. He had diarrhea for 9 mos before we finally had him scoped. I have nightmares about that. We thought we were helping him 'get well'. I never dreamed or had even heard of crohns.

Hang in there and Keep venting here...it helps to get it out amoungst parents on this forum that have experienced all different degrees of crohn's hell...it helps keep me sane! I wish I could meet all of you, I frequently refer to you all as my friends. No one...not even extended family or GI docs...can really know what our hearts and brains feel...only you guys. Love to you all


----------



## MattsMum (Jul 31, 2011)

Well Dan and I have changed roles, he's on the ward with Matt and I'm at home with Ella and my parents. Was so nice to walk in this evening to Ella shouting 'mummy', big smiles and bigger hug. Her prep seems to be going well. Dan managed to get the 2nd one down her before I came home, so right now he's the baddie and mummys come home to save the day!
Good also to have my parents here. Mum had cooked a roast and then not long after run me a bath. It was good to just have that half hour time out, knowing that both kids were being looked after and I could at least try and zone out. Doesn't take much for the mind to come back to reality with a little voice shouting 'mummy', but it felt so good for as long as it lasted!
Now just to get tomorrow over and done...
Thanks all for your continued support
Nic xx


----------



## DustyKat (Jul 31, 2011)

Good luck tomorrow Nic...we're all here right beside you. 

Much love and healing thoughts to you and your babies, :ghug:
Dusty. xxxxxxxx


----------



## Crohn's Mom (Jul 31, 2011)

Right here with you Nic xoxox
Best of luck for Ella tomorrow!!
Try and get a little rest now that your parents are there...let them help you, that's why they came.
big big hugs and lots of luv to you!
~T~


----------



## AZMOM (Jul 31, 2011)

Prayers........keep us posted!!!!

J.


----------



## jordan29 (Aug 1, 2011)

Saying our prayers for little Ella today nic stay strong xx


----------



## DustyKat (Aug 1, 2011)

Thinking of you all...:hug:

Much love, :Karl:
Dusty. xxxxxxxx


----------



## Dexky (Aug 1, 2011)

Any news Nic?  Hope it went well!!


----------



## Tesscorm (Aug 1, 2011)

Thinking of you and your family.  Hope all went well today.


----------



## dannysmom (Aug 1, 2011)

Thinking of you too.


----------



## Crohn's Mom (Aug 2, 2011)

Hoping everything went well and you're getting some rest.

hugs and love,
~T~


----------



## MattsMum (Aug 2, 2011)

Hi all. Well Im sorry that I didn't post yesterday, just didn't have the heart.
Ellas scopes went well, and she's recovered really quickly. Our Gastro has confirmed he believes Ella too has Crohns. Hers unlike Matts is in her throat and upper colon going into her small intestine. She also has some areas of erosion in her tummy. We're now just waiting on her biopsies to confirm, but she's began treatment regardless. I think based on Matts histrory, they're not prepared to wait any longer.

Matt's brighter this morning. Hoping that his drains etc will be removed later today. Just one BIG issue with him right now, and its that he keeps trying to pull his bag off. He hates anything being attached to him. Well this will be fun, trying to get him to leave it alone. Our stoma nurse will be in later to give Dan and I a lesson in learning to care for it, change him etc. Reality hitting home hard now.

Yesterday was a horrid day. If I could have rung our GP and told him I'm not f'ing neurotic and was just concerned (with good reasson it seems) I would have. This just all seems so bloody unfair. I thought I was mentaly prepared for this diagnosis, but it still felt like I'd been kicked in the guts...even Dan sat and wept.
Ella's currently at home being spoilt rotten by my parents. She 'loves' having to take her new medicine, but I'm sure that novelty will soon wear off. The bribes continue...and soon we will be bankrupt lol

Wish I had something more positive to post. Will be back later when we've had our lessons in stoma care, and to let you know how Ellas 1st meeting with Matt since his surgery went. He's always asking after her, I think he misses her greatly. Will be good to see them back together. 
Thanks for all your kind words and good wishes.
Love to all,
Nic and gang xx


----------



## DustyKat (Aug 2, 2011)

Hey Nic...(((HUGS...:hug))

I am so, so sorry to hear about Ella hun. What a difficult and distressing time for you all and it is bloody unfair mate. 

I know the pain and injustice is overwhelming right now and will be that way for a while yet but ever so slowly it will recede and the joy and laughter will return. It's an insidious sort of thing Nic, one of those things that creeps up on you and then you will look back and say...was it really that long ago all this happened. Right now it will feel like time is standing still, each minute seems like an hour and each hour a day, you wonder how the hell you are ever going to get through this, will there ever be a time without doctors, without hospitals, without fear, without heartache, without helplessness, without despair and without the black dog. The answer to that is yes Nic, there will be a time without all those things, they will never fully go away, there will always be good and bad days and the black dog will occasionally coming calling but the times in between are so very precious. Your priorities will change and you will savour your time with your children, it will be more intense, more fulfilling and more loving. 

It's fab to hear Ella and Matt are doing well and hopefully the stoma nurse will have some good tips to keep Matt from trying to pull off the bag! :eek2: 

Thinking of you all and sending loads of love and healing thoughts your way...:wub:
Dusty. xxxxxxxx


----------



## Dexky (Aug 2, 2011)

Amen Dusty!!

Sorry Nic!  I hope the pred rights little Ella's ship and then the other meds keep her going strong.  I won't pretend to know anything about stomas, especially with a 3 yr old,  that's gotta be tough!!  I bet Matt'll come round to it quickly and be a stoma pro in no time!  I wish he didn't have to be  This will all be so much better when you guys are all HOME together again!!!


----------



## dannysmom (Aug 2, 2011)

Hi Nic. I am not sure how long ago Matt was diagnosed, or how long he had his symptoms before treatment with prednisone, etc ... but I am really hoping that the medication will set Ella into remission and perhaps in a way Matt was able to help his sister get prompt treatment. Hope those tubes come off of Matt today. ... and really think/hope this week has been your rock bottom and things will only improve from here on in.


----------



## gypsigirl28 (Aug 2, 2011)

Hi Nic, just read your story.. Sorry you are all going through this and know how hard it can be. Even when you think you are mentally ready for the news, it still hits you like a boulder falling from a cliff. I hope the pred helps Ella and I pray Matt is able to cope with the stoma.  You all are in my thoughts and prayers!!!


----------



## vness1208 (Aug 2, 2011)

the fact that you are able to post after all you and your family have been through is amazing to me. you give people like me the strength to keep going and never give up. you've been let down so much that theres only one way to go from here and thats up hope that the little ones are doing better & praying for you all.


----------



## AZMOM (Aug 2, 2011)

Nic........ I'm speechless.  Love your heart......and your babies' hearts.  Feel free to unload on the GP, it's deserved and hopefully he/she would learn something.  I did that to a pediatric orthopedist (who shall remain nameless) who thought Claire's 3 year old limp & refusal to use a hand was to get attention and wanted to know *how are things at home*.  Two weeks later, she was diagnosed with JRA and was really really ill.  The Pediatric Rheumatologist who diagnosed her was horrified at the 6 month delay.  If nothing else, put your thoughts on paper and ponder sending them at some point.........

I remember the feelings of sadness mixed with almost relief to know that you aren't crazy.  Well you are not and you're a great Mom.  Let us know what we can do to support you all.  

And by the way, I think the good cry was a healthy healthy healthy thing to do.  I mean that!

Big Hug and lots of prayers for your whole family, 

J.


----------



## MattsMum (Aug 3, 2011)

Thanks all for your continued support.
It's Matts 3rd birthday today, and as hard as we tried to make this morning a happy one, neither of them are up to celebrating! 
Matts running a temp, and has sore skin under his flange. We tried hard yesterday with the stoma nurse, but boy was it trying! He hates it, keeps trying to peel it away and is almost constantly pulling at his bag. On a brighter note, NO more tubes, he's free to go wondering and playing again, but really has barely moved from bed or my lap since last night.
Ellas seems to be doing ok. She's having some 'moments' of temper tantrums and being 'hyper', and I'm not sure if its pred related? Was not like this before Monday!

Hoping that we may be allowed home later this week. Its been 7 weeks now, and we desperately need to get out of here! lol
Hope everyone out in the real world is keeping well
Nic and gang xx


----------



## dannysmom (Aug 3, 2011)

So glad the tubes are out for Matt.  Pred made my kids so hyper when they took it. I am sure that is what is causing Ella to be more hyper and have her moments. So hope you can go home soon!!!!!


----------



## DustyKat (Aug 3, 2011)

Happy Birthday To A Very Special Little Boy...Matt!!!





​Have a super day darling and I hope you are home very soon...
​Lots of Love, :wub:
Dusty. xxxxxxxx​


----------



## DustyKat (Aug 3, 2011)

Oh yeah Nic, it's the Pred! It never did anything to or for Matt but I know full that the other Mum's and Dad's here will be able to tell you some doozies! 

:hang:  Mum. You are doing an amazing job! 

Much love, :Karl:
Dusty. xxx


----------



## jordan29 (Aug 3, 2011)

Happy birthday matt pleased all the tubes are out nic the pred is making Jordan very stroppey and moody at times and hyper like Jordan got out of bed at 2am in the morning and asked us to go to mcdonalds for him to get a dairy milk mc flurry and when we said no he sat on the landing window ledge for about 20 min in a mood and he is 15 hang in there Hun and I hope little matt gets out of hospital soon so yous can get back to a normal family life all together in your own home xx


----------



## Crohn's Mom (Aug 3, 2011)

:bdayparty::bdayparty::bdayparty:
Happy Birthday Matt !!


Awe Nic, I'm just catching up and I'm so sorry to hear about Ella as well. This must be the hardest time in your life. Bless your hearts.
Dusty is right, and yes it's most definitely the prednisone making her act out!  That is one of the many reasons why we love to hate that amazing little drug!

I had an idea when I was thinking about Matt the other day, and now it may be nice for Ella as well.  It's simple, but could mean a lot to them; and it's probably cheaper than most of your bribes! 
How about getting two relatively small stuffed animal bears (or whatever kind they may prefer), and having the bears go through everything with the two of them.  Mostly my idea began for Matt, and I thought it may be neat to have an "ostomy bear", that also has an incision like his.  Then maybe you could put a pediatric size two piece flange on his bear and Matt can help change mr. bears bag and bandages.  Ella's could also have one if she insisted, or you wanted, and then she could also participate ( and save your hair from them fighting over who's turn it is! LOL).  YOu could put a bandage on the belly for the incision, or get creative however you like with it.  Then they could always bring them with them to the doctors and hospitals and their bears can go through everything they go through with them.  Sometimes the littlest things can make a big difference in the mind of a child, so this was just a thought.  I hope how I have described what I am thinking makes sense, as I don't have any pictures to show what I mean LOL.

Hang in there hun and hopefully you all get to go home soon!
much love and hugs !
~T~


----------



## Dexky (Aug 3, 2011)

Awe, I guess I missed the birthday boat!!  I hope you all have a proper birthday party when you are home sweet home!!  Soon, I hope!


----------



## Tesscorm (Aug 3, 2011)

Oh Nic, I'm so sorry that you all have so much to deal with right now.     I can only imagine how overwhelming it must feel right now!   But, Matt and Ella are on the road to recovery, and as Dusty said, better days are ahead for all of you.

You'll be home soon and, that in itself, will be a huge improvement!   I'm sure Matt and Ella will begin to recover so much quicker once they're home amoungst their toys, friends and family.

I'm thinking of you and wishing happier days are just around the corner for you!


----------



## AZMOM (Aug 3, 2011)

Hey Nic - T's idea is AWESOME if you are up for it.  "Medical play" was a big thing at Phoenix Children's Hospital.  They didn't force them but provided all the materials and a doll to act things out.  Maybe Matt can pull on the bears bag and leave his alone.  :ylol:

thinking of you all today......

J.


----------



## MattsMum (Aug 5, 2011)

:dance: Happy news!!
We have just been advised, that if Matts condition remains like this we can go home tomorrow!!
To say I'm elated would be an  understatement.:ybiggrin: 

Thank you all so much for your support since I was directed here. It really has helped knowing that others out there have been here, and reading some of these posts, that thing's can indeed get better.
Nic xx


----------



## Dexky (Aug 5, 2011)

Oh man, it's so hard to drive with everything crossed but I'm gonna try today just for you guys Nic!!  I can't imagine how good the thought of all of you home must be!!!  Here's hoping


----------



## DustyKat (Aug 5, 2011)

Oh Nic this is just the most fab news! I am so happy for you all! anda:anda:anda:anda:anda:anda:

Good luck hun, I hope all goes according plan and you are dashing out the doors tomorrow! There really is no place like home...:Flower:

Sending loads of gentle squishy hugs your way, :ghug:
Dusty. xxxxxxxx


----------



## dannysmom (Aug 5, 2011)

Happy for you here too. There's no place like home!


----------



## DustyKat (Aug 5, 2011)

Everything crossed that you wake up to discharge papers today!!! Good luck guys...

:goodluck::goodluck::goodluck: 

Loads of love, :wub:
Dusty. xxxxxxxx


----------



## vness1208 (Aug 5, 2011)

good news  sounds like things are looking up  good luck


----------



## izzi'smom (Aug 5, 2011)

Hoping you are able to get home soon...and keep that bag on! Poor kiddo!


----------



## MattsMum (Aug 6, 2011)

We're on our way home!!!
Will be back to update later. Thanks again all for your support and advice. Its been invaluable.:ghug:
Nic and gang xx


----------



## Dexky (Aug 6, 2011)

Free at last, free at last!  Woohoo!!


----------



## MattsMum (Aug 6, 2011)

Thanks Mark. Just waiting on supplies and then we're out of here!!
Nic x


----------



## MattsMum (Aug 6, 2011)

:yoshijumpjoy: We are Home!!!
Its been a long 8 weeks, but we're throught it. Tonight all 4 of us will sleep under the same roof - small thing but never realised how much it meant until now.
Ella continues to be a little madam, tantrums galore and forever on the go. Crohns wise, she seems stable for now. Not sure if I should love or hate the bloody Pred? 
Matt seems more himself since coming home, he too is running around like a fool. His Ileo is still a bug bear for him, still pulling at the bag, but he does seem to be doing this less frequent. 
I love just watching them be kids again, but their energy is zapping Dan and I. Wish we had half of it, maybe we should all be on Pred? Lol
Hope you're all having a good weekend
Nic xx


----------



## Tesscorm (Aug 6, 2011)

Great to hear Nic!!!   Enjoy your weekend at home with your family!! :ghug:


----------



## dannysmom (Aug 6, 2011)

So glad you are home now ... and this week seems so much better than last week. Thanks for keeping us informed


----------



## Crohn's Mom (Aug 6, 2011)

Congrats on being home! 
That in itself will make all the difference in the world! 

:ghug::ghug:
~T~


----------



## Brian'sMom (Aug 6, 2011)

Nic,
So glad you are all home. That helps things feel normal and safe for the kids.
I'm sure you mentioned this somewhere and I missed it. But did they not ever try Humira after the Remicade(infliximab) didn't work?


----------



## izzi'smom (Aug 6, 2011)

So glad you are home...at least you can be comfortably exhausted chasing after those toddlers


----------



## DustyKat (Aug 6, 2011)

Oh Nic, this is just the best news ever!!! :yoshijumpjoy::yoshijumpjoy::yoshijumpjoy:

I am so, so, so happy for you all! Are your Mum & Dad still there? 

:mademyday:  Big time! 

Dusty. xxxxxxxx


----------



## Max's Mom (Aug 7, 2011)

Nic,wow!I was so happy to hear that you guys are home and doing so much better,have been thinking about you a lot.Will Matt be using any meds now after the surgery?Wish you all the best.Cecilia.


----------



## MattsMum (Aug 8, 2011)

Well we've been home a few days now, and its been good to have us all under the same roof at bed time and in the morning.
Now you will think I'm going crazy (No doubt I am), but I'm missing the security of the hospital. We are having BIG problems with Matt and him constantly pulling at his bag, trying to change it, empty it, keep his skin healthy...its endless. I know this is all so new, and appreciate its a big change for him too, but its getting us down. We were just about getting it together with potty training before he was admitted, now for some strange reason he refuses to use the potty or toilet. He seems to be back to wetting himself....
Ella is the child of the devil. She sure has 666 somewhere on her head. I cant wait to get her off the bloody pred. No sleep, playing at 1, 3, 5am. Hungry at 2am.
It never ends...

I know I should be greatful that we are home, and believe me I am so much. I just never imagined this would be how it would turn out. If one of them sneezes or coughs we worry about the 6MP, if Ella goes to the bathroom a few times in the hour, we worry that she's going downhill, if Matt sleeps longer than usual we worry...We bloody worry about EVERYTHING!
I sat and spoke with And for over an hour last night trying to make sense of this. And I'm sorry to have bothered you- but I just didnt know where to turn. I sobbed, just didn't know how to stop the tears. This morning, I've woken up angry at the world, and thinking why my babies? I'm sat here, while they both run rings round my parents. Boy, they look as exhausted as I feel. Thank god they're here until the weekend.

Please someone tell me this does get better!!
Nic xx


----------



## Dexky (Aug 8, 2011)

Hey Nic, I won't pretend to know what you're going through.  I do remember EJ was a hellion on pred but he was 11 at the time so probably a little more reasonable than a 4 yr old.  

Does it not hurt Matt's stoma to pull on the bag.  I don't know anything about it, but it seems it would and that would teach him to leave it alone.  I wish I had some magic advice for you.  I suspect you're dealing with more in short order than most of us have had to over the long haul.  I hope things start improving soon!!


----------



## MattsMum (Aug 8, 2011)

Mark I would assume its not hurting him at all, or else he may well have learnt that pulling = pain!


----------



## Dexky (Aug 8, 2011)

Is there anything like a velcro strap belt you could cover it with that would help.  Again, I know nothing about stomas so if that is absurd feel free to call me a dumbass


----------



## MattsMum (Aug 8, 2011)

Our next option is tying his hands behind his back!! lol
We've covered it, tried pulling his bottoms up over it...endless. He hates it!


----------



## Dexky (Aug 8, 2011)

Have you tried the pros in the stoma forum?  They may have some practical advice for you.  I hope you all can figure something out soon!


----------



## Dexky (Aug 8, 2011)

Look at this that Vonfunk had made for his...right on cue!!

http://www.crohnsforum.com/showthread.php?t=20906


----------



## DustyKat (Aug 8, 2011)

Oh Nic........(((((((((((((HUGS)))))))))))))

You aren't crazy for missing the hospital hun, not by a long shot. All this is so new, so unexpected and so scary. Is it any wonder that you wish to have the security of knowledge, expertise and reassurance around you, there would be something wrong if you didn't! 

It is a time of adjustment for all of you. You and Dan dealing with your children's diagnoses and learning to deal with Matt's stoma with confidence and ease. Matt coming to accept his new "attachment" and settling into home and familiar routines. Toilet training can probably take a back seat for a little while, he has just had a traumatic 8 weeks in hospital so it is only natural that he will regress a little when it comes to these sort of things. And Ella, she is also adjusting to having her little brother back and taking a medication that makes her behave in a way that she most likely can make little sense of herself. 

Is it possible to dress Matt in bib overalls during the day and all in one pyjamas until he gets use to the bag?  

The worry, anger, frustration, questions, fear and bewilderment are natural and normal emotions Nic and they will lessen over time. I would be lying to say they will go away altogether but they do over time fade further into the background.So yes Nic, it will get better! 

:hang:  Mate. You can and will make it! 

Much love, :Karl:
Dusty. xxxxxxxx


----------



## Tesscorm (Aug 8, 2011)

Hi Nic,

I can certainly understand 'missing' the hospital!  I felt the same way when my son and I came home.  It's scary and stressful when you're worried about your children and so worried that you might make a mistake.  When I first had to make my son's formula, set up the pump, check if his ng tube was in the right position, etc. - everything seemed scary!  Doesn't it remind you of when you first brought them home as newborns?  I realized that I was feeling the same way as when I brought my first child home - worried about 'caring' for a newborn, how to bathe, caring for the cord, sterilizing bottles, afraid I wouldn't hear something while I was sleeping, etc.  It became easier with time and I told myself that this wasn't any different - I was learning, would learn and would trust my instincts re 'worries'.

And, I know the the worry and anger is so difficult...  I felt the same way last week over so much less than you are dealing with right now.  You have so much being thrown at you right now, how can you not be worried and angry??!!  All I can say is we all feel your pain and frustration.  You have to believe it will get better; you are closer to happier days than you were a month ago, and tomorrow you will be closer yet!  

Going 'bit-by-bit' helps me - try to focus on one issue at a time, try to not let your mind race to the next hurdle.  You know what happens then..., you start to worry about 'B' while doing 'A', lose focus and begin to mess up 'A' and then feel overwhelmed because 'how are you ever going to tackle 'C' when you can't even manage 'A'?!!'

Wish I could suggest something re Matt's tugging on his bag or Ella's energy...  Hopefully, someone on the stoma forum can help you...

Praying for you and your family to come through this as quickly as possible!!!


----------



## Brian'sMom (Aug 8, 2011)

Nic,
This may also be dumb advise, but how much prednisone is Ella on? My son is 11 and has trouble dealing with 30 mg. After he had his allergic reaction to Remicade and just before his Humira induction they wanted him on prednisone while we waited. She prescribed 40 mg, I told her what he was like on 30 so she decided to start him on 25mg. Maybe she's on too high a dose? My son would wake up during the night too and be hungry and want to talk. It ended up getting myself into a pattern of not being able to sleep past 3am even after he was sleeping again. Took awhile to break that cycle for me and I wasn't on anything!! Like Mark said tho, our kids are at the age we can reason with them, my heart goes out to you. You're kids are so young.


----------



## Crohn's Mom (Aug 8, 2011)

Awe Nic.. I'm so sorry hun!

As far as missing the hospital goes...I was the exact same way when Gab came home after her surgery...and she's 18 years old! I was so scared, I couldn't sleep, every little move she made I cringed that something was wrong. I hid in my room and the bathroom and cried and cried and cried...for days on end.  I was just so sure I was going to screw it all up and hurt her even worse..I knew she was going to end up with a massive staph infection in her wound; I would rip the flange off and cause sores; I would hurt her some how, some way.  I just knew it!
But you know what....I didn't, and she was fine.
It took a lot of trial and error, and a river of tears, on both of our parts, but we got there.  I did "hurt" her now and then learning to change the appliance, cleaning the stoma site, etc.  I took care of it 100% (except for emptying) for a little over the first 2 months.  She wanted to punch me out a few times because it did hurt at first.  It is tender until it heals more, and when your doing it for them, you can't feel what they are...It takes time.
Do you have any home health care nurses available to you?
We were assigned 2 nurses to come out a few times a week for the first 2 months afterwards to help with the learning process, ordering supplies, etc. 
Is this an option for you? 
Also, I think Dusty's idea of overhaul bibs for a while is great.  And you can also search online for Pediatric Covers for the bag as well...there are a lot that come in fun patterns for the kiddos too.

It's probably the last thing on your mind right now...but have you tried the "Ostomy Bear" idea yet ? It really may help to teach him to be involved in his own care, and maybe if he can take care of the bears appliance then you can convince him to leave his alone.  Maybe put some candy pieces in the bag as fake poo even so he can realistically empty it as well??

My favorite saying in life, and it's much easier said than done, is "Don't sweat the small stuff".  His retreating back to wetting himself, in this particular case, is really the "small stuff" here.  Put him back in a diaper and leave that be for now until you can find time to deal with it later..when things are more settled. 

And last...have you tried splitting up Ella's dose of prednisone ?? Do you give it to  her at night ?  Maybe just during the day is an option as well?
I know that stuff is horrendous on the little ones!

Go ahead and allow yourself to grieve, and be angry for a bit.  Just don't let those feelings take you over !  Use it to your advantage to find a system that works for you and your family!

Hang in there sweetie! We're all here for you!!
Take full advantage of your parents while they're still with you...don't feel bad...they can rest in a few days when they go home! 

lots of luv and hugs !!
~T~


----------



## AZMOM (Aug 8, 2011)

Ok - first of all - IT WILL GET BETTER.  I'm sure it seems like total hell right now though!  Love your heart..........

I can't give ostomy advice :-( so I'll leave that to the experts.  But, prednisone......that I know something about.  

*First, are you giving it in the morning?  If not, DO!  
*Second, when do you start to taper?  
*Third, we've done a couple of strategies to combat the "always hungry" thing.  We had a "Claire shelf" where I put lots of low calorie snacks (and a few with plenty o' calories - lol) on a shelf where I would just let Claire choose what she wanted.  Repeat that for the fridge (small containers of yogurt, applesauce, mandarin oranges, grapes), even half a shelf with a post-it with her name.  The other thing that worked well is that when Claire would eat a meal (this was the first time around at a younger age), as soon as she would finish we would set the time for snack time.  Depending on just how damn manic things were, sometimes I would only set it for 90 minutes.  Sometimes 2 hours.  So, when she would ask to eat, I'd say "Check the timer......" and that way she would know.  Okay fourth, smoothies are a great filler.  Claire's fav is one banana + about 1/2 C skim milk + crushed ice.  She thinks she's had a major treat, it's good for the belly and the calories are good.  Might be one of the snack choices?????

Fourth of all, prednisone is NOT forever and there will be weight gain regardless.  And, yes, it goes away.  So just do the best you can and girl........cut yourself some slack!!!!  You need one less thing to worry about.  

I hope some of this helps.  I promise I get it.  Claire is hell on wheels with prednisone and the younger they are, the harder it is.  

Please keep us posted......big hug!

J.


----------



## Brian'sMom (Aug 8, 2011)

Fantastic advice Julie (as always!! ) XO


----------



## MattsMum (Aug 9, 2011)

Thank you all so much for just listening...really does help to just be able to come here, rant away and have people understand!!

@ Dusty. Yes, we're out later to Mothercare to try and get as many all in ones as possible. Hoping this will prevent the lil man from constantly tugging at his bag. He is making his skin raw, but it deosn't seem to bother him at all! As for the toilet training, he needs to be trained to start nursery in Sept, and time is creeping up on us quickly now. He starts in 3 weeks. Giving him some grace this week, then next week I'll be following him around with a bucket!! Wish we didn't have to push this, but its just not an option.

@ Brian's Mom and Julie- Ellas currently taking 35mg of pred and we're giving it as early as possible and all in one dose. We're reducing by 5 mg per week to 20mg and then she's seeing the gastro to re-evaluate. Great suggestion about a food shelf, really hadn't thought of it, but I'm sure it would work in this instance. She took up and apple and a banana to bed last night. I don't know where she's putting it, but she sure can pack it by in that little belly of hers.

@Tracy. Thanks for the suggestion of the bear. We tried something simular in hospital. To say he wasn't interested would be an understatement. We are open to trying again though, anything to help him out. I hear you with regards the tears, when they start they are impossible to stop. I'm always fearful of hurting him, doing something wrong...
We have a great stoma nurse who's visiting daily. She has given us loads of confidence, and it lasts as long as she's here, but seem's to leave with her too!

Well both rugrats are running around like fools. If the weather stays good we're off to the park later then Dans taking Ella swimming tonight. We will find this girls 'drop off point' and exploit it to the full!! So glad the pred doesn't seem to be having this effect on Matt, I'm sure he's just running around because she is! Tomorrow his stiches come out, and we have a follow up with the Gastro. All signs right now are pointing to him looking/being well. Maybe there is a glimmer of light after all.

Thank you all so so much.
Hope everyones having a good day out there
Nic xx


----------



## Dexky (Aug 9, 2011)

You sound more hopeful this morning Nic!  Still the problems with Matt's stoma and potty training are disturbing I know.  I hope he learns to leave the stoma alone before he causes any serious skin issues.  If there is any problem that seems to plague the ostomates on here, it's the skin under the flange.  Will Matt have to be able to empty the bag at the nursery??


----------



## MattsMum (Aug 9, 2011)

In theory Mark yes. We're hoping to just put him in for 3-4 hours a day to begin. We should just be able to go that long without the need to empty, but we have been told it should slow down as time goes on. Nursery won't deal with any of this, they'll clean him up should the bag burst, but nothing beyond that.
His skin looks rather well right now (I am surprised), long may that continue!!


----------



## DustyKat (Aug 9, 2011)

Hey Nic,

So great to hear from you Nic! I have been thinking about you all and hoping more than anything that things are settling...:ghug:

It's a shame that under the circumstances the nursery school can't be a little more flexible. 

Ahhh...but it is oh so good to hear that Ella and Matt are running around and enjoying life! May it last a very, very, very long time hun. Fingers, toes and everything crossed! 

:mademyday:!!!!!!!!

Dusty. xxxxxxxx


----------



## Tesscorm (Aug 9, 2011)

Hi Nic,

Just a couple of ideas that may help with Matt with his toilet training...  but, it's been a _long _time since I had a 3 and 4 year old, so Matt and Ella may still be a little young for this...

Idea is simple enough, I'm sure all parents have used some variation at some point...  When my children were much younger, I made up a 'Reward' poster.  :medal1:  At the top of the poster, together with my kids, we pasted/drew pictures of things they liked (ice cream, a tree representing a trip to the park, pool/swimming, a book, etc.) and I put 'values' for each reward. Beneath this section of rewards, I drew a grid.  Each time a 'reward' was earned (i.e. they behaved while out somewhere 'boring' or ate a new veggie, etc.), they got to put a sticker in one of their boxes.  They could eventually 'buy' one of the rewards.  The build-up of stickers seemed to help 'excite' them to get a reward!  And, as my son was a picky eater, sometimes I would give him a sticker for EACH bite of a new veggie so that he could earn a reward quickly and encourage him to do it again!  :luigi:  For Matt, perhaps a sticker for each use of the toilet??? (I just don't remember if 3 years old is quite old enough to understand the concept of adding/saving for a reward).


An even simpler one was the 'Treasure Chest' I had for my kids...  I filled a box with small treats/rewards (pencils, erasers, little toys, etc.) and when they earned a reward, they were allowed to pick one item from the Treasure Chest.  This tactic didn't work as well and sort of backfired on me  - they eventually got bored with the 'small' rewards I'd chosen :boring: and started making demands as to what I should be filling the chest with!    Started to 'negotiate' that if I wanted them to do something, I'd have to fill the box with 'better' rewards!  LOL   At this point, I 'buried' the Treasure Chest permanently! :arghmatey_ani:


I hope today is going a bit better for you and everyone at home!


----------



## Welsh-bird (Aug 10, 2011)

Thinking of you all. Hope last night was a better one.
Let me know how you got on at out patients today.
And xx:hug:


----------



## MattsMum (Aug 10, 2011)

Thanks all, for the well wishes and thoughts.

Matts outpatients apt went rather well today. His surgeon and Gastro both seem please with his current state and his progress this far. His CRP is still high at 109 but it's coming down so we are heading in the right direction. For now, they want to continue on 30mg of pred until he's more stable. The only concern they have (same as Matts neurotic mum) is his unease with his bag, and the need to be constantly pulling at it. The skin is becoming sore, but doesn't seem to be bothering him too much. Finding it so much easier to remove the bag at night and bath him- its the ONLY time he doesn't play with his Ileo. 
Been thinking of this since we came home, but is it possible for the bag to be causing an itch thats getting to him? Could he possibly be alergic to the material? Not enough to cause major discomfort, but enough to be driving him mad?

Ellas still being, well a little madame. I shouldn't complain, I would rather her play up then watch her laying on the sofa poorly as she was weeks ago. Just hoping that they WILL reduce her pred when she sees them in 2 weeks time. For now, she seems rather well too. Just hope her bloods reflect this.

Was a huge relief being able to walk in AND out of that hospital today, with Matthew. Was relieved when they said he was well enough to be at home.
Slowly we are adapting to our new 'normal'. Its as much a learning curve for us as it is the children, but we will get there.

Hope your all well out there
Nic xx


----------



## Carrie630 (Aug 10, 2011)

I can't remember if you ever said, but can he get a j-pouch?  I know there is still the crohn's risk, but then he wouldn't have the bag.  Is he using a two piece bag? would a 1 piece be less irritating?


----------



## Crohn's Mom (Aug 10, 2011)

Yes! Absolutely that is probably the reason he is pulling at it so much!
Yikes! I'm sorry that didn't even cross my mind to tell you ... You can call the major companies like Hollister, Coloplast, Convatec and ask them to send you samples...those three all make pediatric supplies I know.  I'm not quite sure how it works there, but I'm sure if you post or just look around in the Stoma Subforum they will be able to help you and and direct you to exactly who you can call. 
I'll bet that's it and if you get the right one that's not irritating him it helps!
Best of luck!


----------



## Dexky (Aug 10, 2011)

Awesome update Nic!!  Things sound a little better every time


----------



## DustyKat (Aug 11, 2011)

Oh Nic, it's so fab to hear that the kids are picking up. At last ay!

You certainly are sounding better and that is music to my ears. I know it's still new and that learning curve can be pretty bloody steep at times but you are doing an amazing job Mum, kudos to you!

Onwards and Upwards! :heart:
Dusty. xxxxxxxx


----------



## Crohn's Mom (Aug 11, 2011)

http://nursing.uchc.edu/unit_manuals/nicu_nursery/brochures_handouts/docs/Colostomy,Ileostomy%20Handout.pdf

Hey Nic,
I was trying to research some stuff on stoma's for Gab's problem and came across this website for neonatal care for them.  It has a wealth of information on it.  Hope it helps a little.


----------



## MattsMum (Aug 16, 2011)

Hello all!
I'm sorry for not having checked in for the past week, we've been back in hospital (still here), and to be honest it's just all got too much now, and I feel so down.
Matt's continued to have problems with his Ileo- not just the constant pulling at it, but it's been so active that he became severly dehydrated, and then developed an infection, and it all escalated from there.

Just HATING that both my babies are suffering right now- what I would give to take it all away or at least have Dan or I take their place.
Hope everyone else is doing well.
Nic xx


----------



## Dexky (Aug 16, 2011)

Oh Nic, I was hoping you were off because there was nothing to tell.  I'm so sorry that isn't the case!  I hope they get it sorted soon!!


----------



## dannysmom (Aug 16, 2011)

Oh Nic I am so sorry for this. Praying for Matt. Is Ella still doing better? Thinking of you whole family here. It does SUCK!


----------



## Tesscorm (Aug 16, 2011)

Am very sorry to hear that you're back at the hospital!  Hope Matt's beginning to recover and you can get back home quickly!


----------



## Brian'sMom (Aug 16, 2011)

MattsMum said:


> what I would give to take it all away or at least have Dan or I take their place.
> Nic xx


Oh how I have wished that same wish millions and millions of times. It just doesn't work that way, does it  So sorry to hear about Matt. Try and stay strong.


----------



## DustyKat (Aug 17, 2011)

Oh hell Nic, I am gutted to hear that Matt is back in hospital...

I hope they can get things sorted quick smart hun and you are both back home ASAP. 

Thinking of you mate and sending loads of love and hugs...:hug::hug::hug:
Dusty. xxxxxxxx


----------



## Max's Mom (Aug 17, 2011)

I can't believe all this trouble you guys have to go through.When is it going to end already?I wish I could do something to help you. I keep pushing my son to become a doctor so he can figure this Crohn's "thing" out and find a cure already.I hope everything gets better soon. You guys deserve it.


----------



## MattsMum (Aug 21, 2011)

We are home again!
This time around, thing's do seem much easier. Matt did have a problem with the adhesive on his flange, we spent a few days trying various different ones, and seem to have found one that isn't causing any irritation at all, and better still, he's no longer playing with it! Makes life so much easier. His infections way better, still there but not to the extent of 2 weeks ago. In all he seems to be doing really well.

Ellas now on her pred taper. Can't come off them quickly enough for my liking. I really don't think they're having much of an effect on her condition. Is it unusual to not respond to Pred? We saw her Gastro last week, and he's not too convinced either that its been of much help. I understand that it will take some time for her 6mp to kick in, just hope that when it does she too will be feeling much better. Still getting the occasional vomiting, sore belly, really bad mouth ulcers, but early days still with her right now. Trying to remain optimistic- am I the only one that finds that hard to do all the time?lol
Hope all the kiddos are well out there.
Much love, Nic xx


----------



## DustyKat (Aug 21, 2011)

Oh man Nic, this is just the sort of update I love! anda:anda:anda: 

I am so happy to hear that things are settling for Matt, YAY! What a relief for you both...:hug:

I hope things keep settling for Ella hun, everything crossed! I don't know how unusual it is not to respond to Pred, but I don't think it much for my Matt. I imagine it did help to keep things settled but it wasn't a wonder drug for him that I could see, he suffered none of the side effects either so perhaps that skewed my perception as well. 



> Trying to remain optimistic- am I the only one that finds that hard to do all the time?lol


Hell no!!! :lol: I reckon we are all sailing in that boat together and commiserating along the way, just like this...:ghug: 

Loads of love, :heart:
Dusty. xxxxxxxx


----------



## Dexky (Aug 21, 2011)

Hey Nic, I'm glad things are improving for Matt  Did the doc consider upping Ella's pred dosage?  I hope they get her straightened out before things go any further!  Don't let them discount the severity of her bro's Crohns!!


----------



## MattsMum (Aug 21, 2011)

We started on 40mg of pred, could we have gone higher?
The thought of anything higher and her behaviour I'm sure would finish Dan and I off!! lol
Nic x


----------



## Dexky (Aug 21, 2011)

I certainly wouldn't know Nic.  But if it isn't helping and with her bro's history!!  Just keep thoughts of Ella fresh on their minds if you catch my drift


----------



## no : (Aug 21, 2011)

Nic,
I've just read through all of this from the beginning! WOW! Sounds like you guys are really having a time of it! 
Where abouts in the UK do you live? I'm from Manchester (though i was treated in Alderhey) and we have a group that meets up for activities and such. It's called diversions family support network. You'll find us on facebook and google. But it's basically for young children and their families who have a bladder or bowel diversion. We also have stoma reps who come round with their supplies and products which is always insightful. There are a few kids with crohns also 
I've had crohns since i was 11. I can quite honestly admit i drove mum and dad to dispare. When I ended  up having emergency surgery and an ileostomy at 15 I thought mum would have a nervous breakdown! 
Things do get easier I promise. 
Feel free to add me on facebook (Jenny Shimmin) i'm more than happy to chat on the phone also  
chin up! There are people thinking about you!


----------



## dannysmom (Aug 21, 2011)

Great news about Matt. (Tracy you are so smart!!!!)
I think 40 sounds pretty high enough for a 4 year old. Prednisone actually made Danny worse (Danny is not diagnosed though!) - by day 3, every symptom he ever had with this came back as bad as ever with diarrhea >14 times daily. As he tapered off the pred, he went back to baseline symptoms. I never came across anybody with this reaction. I heard stories of it not helping, but not worsening things (other than normal pred side effects).  Has your doctor mentioned Humira?  It is a biologic like Remicade but has fewer allergic reactions. 
Re: optimistic ..... just take one day at a time!


----------



## Brian'sMom (Aug 21, 2011)

Nic,
Prednisone did not help my son. His SED and CRP numbers continued to climb while taking high doses of it. All the while also taking Azathioprine and Pentasa too. At some point they have to start tapering the prednisone...and then things got even worse. That's why we went the biologic med route. There was no where else to go for us. He was soooo sick and he then caught every illness that came our way. (Flu, strep throat, etc).  With the help of our school,I home schooled while we started Remicade (Which started to help him but then he had allergic reaction to the mouse part in it) and then Humira at the end of Jan. After that, everything started turning upwards and onward to healthy days. I initially fought the biologic stuff...our doctor wanted to do it in July...because I was scared of all the scary 'side effects' printed, but our GI dr pointed out to me; "Why aren't you scared of the side effects of steroids? They have permanent side effects, especially when given to young children." She had a point I thought.


----------



## MattsMum (Sep 9, 2011)

Well it's been a while since I was last here!
We are at last hovering with our heads above water level. Matt continues to go from strength to strength, and is back to being the bolshy little toddler he was months ago. Life with his Ileo is getting better daily, and for now, he continues to be leaving it well alone. I hope, and everything crossed here, but he may well be heading into remission. Things are plodding along nicely at nursery too.

Ella continues to be the devils child, but she too is back at school full time and burning off her pred energy there! Her Cd seems to be improving, although not as quickly as Matt. Complaints of tummy pain is decreasing weekly.

Both little ones are due check ups next week, but for now, we are doing better than I could have thought possible all those weeks ago.

Hope all of you and your kiddos are doing well out there.
Thank you so much for the support offered to me. It won't be forgotten.
Nic, Ella and Matt xxxxx


----------



## DustyKat (Sep 9, 2011)

Hey Nic,

It's so fab to hear from you!!! I have been wondering how are you getting on and it's great to hear that your dear little ones are going so well. What a relief! phew! 

I hope they both continue to go from strength to strength. Good luck with the check ups and keep us posted, I will be waiting! :goodluck:

Much love, :heart:
Dusty. xxxxxxxx


----------



## Dexky (Sep 10, 2011)

Nic, I hope the fear that sent you searching for answers becomes a distant memory, but please drop in from time to time to let us know how things are going.  It's good to read  the relief in your post!!  May it long continue!!


----------



## Welsh-bird (Sep 10, 2011)

Hey Nic- so pleased to hear thing's have taken a turn for the better. It's been ages since I've heard you sound so positive!! 
Glad Matts settled into nursery, and it must be a huge relief having Ella back at school full time..:ylol:
I have an o/p apt on Weds morning with Neil, so may well bump into you all then.
Loads a love xx


----------



## DustyKat (Oct 11, 2011)

Hey Nic,

We haven't heard from you for a while. I hope, wish and pray that means all is well.

Thinking of you, :ghug:
Dusty. xxxxxxxx


----------

