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The Worried Mum's/Dad's/Carer's Club!

DustyKat

Super Moderator
I thought I would start this thread as a place where you can put down your worries and fears about your kids. It doesn't have to be IBD related, it can be about any issues you are having with kids no matter how small.

I think at times we stew over things but don't feel they warrant a thread of their own. Also you may have problems with your non IBD children and just need a friendly ear.

Okay, so I will start this off.............

Roo emailed me this morning and said when she was out at a concert last night she had really intense pain in her side. When I questioned her about it she said she hadn't had this sort of pain since she was 14! :eek2:. It is nowhere near as bad this morning and she has no other symptoms, if it persists she will go and have it checked out.

I'm worried!!!

Dusty. :)
 
try not to worry... the fact that it's subsided, and there's no other symptoms, are good signs... she possibly pulled a muscle singing/dancing at the concert, or even sent one into spasm, which can be really painful. or it could be mid-cycle pain, if the pain was more towards the tummy on one side, just inside of the hip bone.

she sounds a sensible girl, and i'm sure she will see the doc if it persists, but i bet it just calms down on its own.


good thread idea, by the way.
 

Crohn's Mom

Moderator
Dusty, try not to worry too much :)
Easier said than done right ?!?
I can't even imagine how I am going to feel when Gab leaves for school and I can't "see" her for myself. It's bad enough when she's standing in front of me and says, mom my "alien baby" hurts and I try to keep that straight face and just simply ask, "what do you need?"
It's nice to know that Roo still lets you know when she's feeling things that aren't quite right tho!
I'm quite sure you live on pins and needles wondering ...what next
Argghh...this damn disease !
 

Crohn's Mom

Moderator
btw...for the record....Gab calls her "mass" her alien baby LOL....

I told her we will have a funeral for the little alien after her surgery :)

Keep laughing ! It's healthy for the soul !
 

DustyKat

Super Moderator
Thanks ding and Tracey......:hug::hug::hug:

I think it helps just putting out there, I know you guys know what I mean.

I have been thinking, shock/horror!, and I wonder if it does settle if it could have been a partial obstruction?? She would have to have some sort of narrowing at the anastomosis. Anyway, thinking happy, non Doomsday thoughts. :ylol:

Ahahaha, love the alien baby! Do we get to give it a name?

Thanks, :)
Dusty
 

Crohn's Mom

Moderator
Did they remove Roo's appendix during her surgery? (I'm sorry, I did read ALL your previous threads...but just can't remember that for some reason) I am assuming they did...but, was just thinking that if they didn't maybe it's just an inflammation there ?
I have chronic appendicitis for 9 years now and they have yet to remove it....it's an awful pain now and then. (esp the last 3 days! ouchy) I think it's about to calm soon tho...I can feel it :)

And, Gab couldn't think of a proper name so she just refers to it as "alien baby". Every single time she says it I can't help but smile a little hehe.
 

DustyKat

Super Moderator
You know Tracey, Dex once said something to me....................

"The worst thing that happened in my life didn't happen to me".

I reckon we can all relate to that and it sums it up nicely. Yeah, we will keep on laughing and cherishing the good times! :):):)

Dusty.
 
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DustyKat

Super Moderator
Oops...........too slow! :lol:

Yeah, they did remove it. They actually thought they going in for a simple appendectomy and look around, hmmmmm didn't quite work out that way!

Good on Gabs, what a wonderful attitude! It will get her a long way in life.

Dusty. :)
 

Astra

Moderator
Hiya Dusty

Roo will be ok, she is so sensible and knows the score.
And the fact that her symptoms have died down indicates that she'll be ok.

I'm a lot worried and concerned about Jessica (19) she's away in Leeds at Uni.
But she's ill, and I can't tell you what with at the mo, I'm too upset, I've confided in Pen tho. I feel so hopeless, cos she's so far away. All I can do is reassure her over the phone that she'll be fine, but I know she won't.
We're getting thro this, our GP has been fantastic. He gave her a few scripts to take back with her should she flare up again.
And no, it's not an IBD
 

AndiGirl

Your Story Forum Monitor
I feel for you parents with sick kids. We are in limbo with Alex. I sincerely hope that he does not have an IBD. If he does, I know it won't be the end of the world. I'll be frequenting the parent section more. It's easier to be the one with the disease than to see your child suffering.
 

DustyKat

Super Moderator
Hey Joan,

Thanks hun. I have been thinking about her pain a lot, back, hip, thigh and right abdominal and the fact that it came on suddenly and severely with no signs of CD flare preceding it. I am strongly leaning toward her having a kidney stone. I know with her ileum involvement and SBS she will be very prone to stone formation. It is early Monday morning here and I haven't heard anything from her since last night so I am assuming she has had a good night. Fingers crossed!

Sending loads of squishy (((HUGS))) to you and Jess and I hope things settle soon hun. :hug::hug::hug:

Hey Andi,

I too hope that Alex doesn't have IBD, I don't want to have to see you hanging around in this forum but it is lovely to see you none the less! :hug:

Dusty. :)
 

AZMOM

Moderator
I'm IN. Count me in!!!

You know Tracey, Dex once said something to me....................

"The worst thing that happened in my life didn't happen to me".

Not sure how to make that look like a quote, Dusty, but I don't know that Dex has ever uttered wiser words. :) :)

My day today? Telling Claire she had to make her "coconuts" in the hat from the doctor so I could take a sample to the lab. Some of you may call that stool, BM, doo-doo, poop, etc. but at our house, periodically Claire changes the words for things that bother her. So, sports fans, today it is "coconuts". We took the coconuts to the lab, had her blood drawn, listened to her tell the phlebotomist to "do it right the first time because I don't want you to dig around". I LOVE that she is so mature but HATE that she is so mature at 7. It broke my heart today for some reason.

The 11 year old's newfound wheezing was terrible this weekend. We spent a lot of time outdoors because the weather was so nice. He got panicked and was looking for the inhaler. Then he went in and sat while his friends were outside tearing around. I could have just cried.

Now is any of this life threatening? Heck no. Am I blessed? Heck yes. But do I worry? Well.....you know the answer to that.....every day!

I love all of you all and am thankful that you are here. Thanks for listening.

J.
 
Another club member. We're in a good spot right now but I have to do the renewal for Humira through insurance company. Dreading the process

Thanks for the new thread. We refer to crohn's as the little brother.
 

DustyKat

Super Moderator
Hi Julie,

Godammit J, Claire is such a little trooper! Even through all the crap she must make your heart sing, :).

I think watching what your kids can't do, the simple things like running in the yard, is one of the most heartbreaking things a parent experiences. I hope your boy's meds kick in real soon and he can soon be out there tearing around with this mates.


Hey Zoodles!

Welcome to the club, :biggrin:

So great to hear that all is going well, YAY!!! Hoping all goes smoothly with the renewal, I will be keeping my fingers and toes crossed...........

:goodluck: hun!

Dusty. :hug:
 

DustyKat

Super Moderator
Well Roo woke up with pain yesterday, about a 5/6, and it didn't abate all day, so she took herself off to emergency yesterday evening. This is the first time she has been unwell like this since moving to Sydney and being 600kms away was really doing my head in. Talk about being torn, wanting to jump on a plane and be there with her but then I have Matt at home, doing okay but far from out of the woods and needing flushes and dressings done twice a day, @#%*!!!

Of course Roo handled everything just fine and she was kept in the ER until early this morning. Her inflammatory markers are normal, she has no kidney stones (ultrasound), no palpable abdominal masses, no urinary infection and still no other Crohns symptoms. Strangely enough I am clinging to the fact that her bloods are grossly normal, those of you that know Roo's story will see the irony in that! :ylol:

They don't know why she developed the pain but she responded well to Endone in the ER so they released her with a script for the same and orders to return in 48hrs if the pain doesn't settle. She has just emailed me and said she took a tablet at 11am and now she feels drunk, hmmmm, I think 1/2 a tablet might be enough for a slip of a thing like Roo! :biggrin:

Hoping, hoping, hoping that the whole episode settles and becomes a bad but faded memory! :voodoo:

Dusty. :)
 

AZMOM

Moderator
Me too, Dusty, me too..........

If not, fly over the pond, come see me and we'll just do this :ybatty: :ybatty: :ybatty: until we can't remember our own names. LOL

J.
 

DustyKat

Super Moderator
Hey T!

When I spoke with her yesterday morning she said it was a 3 and she was feeling better. I haven't had the chance to speak with her today, I don't want to ring and chance waking her up, but either she will be coming home today to do some election stuff or heading back to the hospital! I so hope it's the former. Keeping my fingers and toes crossed!

Lots a love, :hug:
Dusty
 

DustyKat

Super Moderator
Thanks Rachel! Must have worked 'cause she has just emailed me and said she is a little sore but will be heading home about lunchtime! YAY! :):):)

Now all that's left for me to do is worry until I know she is home safe and sound!:eek: And then let the spoiling begin! :ybiggrin:

Dusty. :hug:
 
Dusty, Hope Roo is feeling better today.

Julie, The thought of "coconuts" made me smile. Sounds like something my 6 yr old would come up with. One day she told me hers were pickles lol.

Things are going pretty well for us here. K goes for her bloodwork tomorrow. Hopefully what she is on has been working otherwise she is going to be put on a new med. Polllen season is starting here so chances are the next couple weeks we will all be sneezing and my youngest will go around with her asthma/allergy cough.
 
:ghug:Group Hugs to ALL the Wonderful Parents!!!! Seeing our Kids go through so much just to be a Kid.... then add to that this Hideous disease! WE WILL WORRY!!! It lurks in my mind all the time.....every little ache & pain he brings to me!

Dusty thanks for starting this Topic! I so hope Roo is feeling better & nothing much comes of all this.
 

DustyKat

Super Moderator
@ Jen. Keeping my fingers and toes crossed that K's blood work is normal! Keep us posted! Hayfever season......blah. :hug;

@ Mom. Hope all is well in your camp! Worry, worry, worry, worry.....................it's sure what I do best! :ylol:

It's so good to see Roo in person! I don't think there is anything better than being able to eyeball your kids so you have a better idea of what is going on. She had a bit of a sore back yesterday from the long drive but has woken up this morning in no pain! YAY!

I asked her last night if she was going to take an Endone before bed and she said she didn't bring them with her. When I asked her why she said "I'd feel a bit strange carrying that sort of stuff around!" :lol:

Dusty. :)
 
Dusty....It's funny you should mention "CAMP" that's exactly what I am worrying about! In our public school district in the US where I live. The 6th graders go to camp for 4 nights & 5 days. It's educational with lots of fun! Daniel is doing a lot better but is finding that he can only eat certain things like a bland meat, rice, potato diet. But no milk or cheese. A tiny bit of lactose free milk added for cooking is ok but that's about it. It is helping keeping his frequent flyer miles down to 2-5 times a day. About every other week he is catching what ever is going around resulting in missing more school because of high fever for a day here & there. I think he has missed over 30 days this year. Well the tricky part to camp is that they hold it at a Jewish camp (only one big enough to hold all the kids at once & very very nice)! They will work with the kids diets too but one day is milk meals & one day is meat meals! Not sure what to have them feed my child? We are still feeling our way through all this diet stuff!
We are off to the GI Dr. today (more school missed, a day & 1/2 this week missed)!
My 21 year old son is off at College, he had emergency surgery & DX with IBS 2 years ago. I totally understand that whole seeing your kid in person....I always get the "MOM I am fine....everythings OK....BLAH BLAH BLAH...."! But when I see him I know he is not taking care of himself like he should.....Sighhhhh but he is an adult!

:bigwave:
Waving to ALL & Hoping what ever is going on in your neck of the woods is gently passing bye!
Julie, MOM, Rachel, Jen, Mark, Joan, AndiGirl, & Angel:bigwave:
 
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DustyKat

Super Moderator
Hey Mom!

The whole camp thing is a bit of an obstacle course ay? I don't imagine there will be too much R&R for Mom while Daniel is away! :eek2: You'll have to visit the Worry Club instead!

When is the camp?

Dusty. :)
 

Astra

Moderator
:bigwave: back atcha Mom!
hope all's well with you and your happy brood!

Dusty, so glad to hear that Sarah is on the mend, and I'm happy to report, so is Jess!
She's coming home 1st April for a month, and yes it's so good to 'see our kids in person!!'

Everyone stay well
xxx
 

Crohn's Mom

Moderator
I definitely feel part of this "worry club" today...:angry-banghead: <<that's how I feel !

Our morning of pre-op started out to be good. All of Gab's blood work came back looking good with no signs of infection. And then....her urinalysis came back showing she has a UTI, then we had to go back to the lab for a repeat collection to see if there's anything growing. So they have added an additional antibiotic to her long list of meds for that. It does explain all of her extra lower back pain this last couple of weeks tho.

Meanwhile, we met with the urological team that will be assisting in her surgery. I knew there may be "something" going on with her kidney, but really didn't know the extent. They are about 90% sure they will be inserting a permanent stint into her uretra; and she possibly has some kidney damage due to swelling of the kidney (hydroureteronephrosis). (THIS DAMNED DISEASE ! :ymad:) He said he's doesn't think there is according to her blood work, but they won't be sure until they get in there and see for themselves. There are 3 urological surgeons that will be in the operating room with her ! 3??? What's with that ????

Then to top things off I requested a copy of her MR enterography report from January....I shouldn't have read it. I wish I hadn't.

I'm just going to write one sentence out of it here and I'm sure you can get an idea of just how bad my poor girl has this disease....

"The terminal ileum, ileocecal valve, cecum, and proximal ascending colon are unrecognizable, caught up in an inflammatory mass of clumped bowel, inflamed fat, and lymph nodes in the lower right quadrant."...

And then the topper....we had to go for an ostomy consult. They taught her all about the illestomy that supposedly she won't need. If that's the case then why did they "mark" her so the surgeon knows exactly where to put it and then insist that if those marks come off before Monday to make damned sure they know it so they can put them back before the surgery ?!!!???

I just want to cry....I'm sorry...I probably should have put this on the "vent" away thread huh :duh:

Im sure I'll jump right off my pity me horse quickly and get back to little ms positive shortly :ywow::ywow:
It's just been one of those days.....I am so thankful that her surgery is on Monday though! Can't come a second too soon !!
 

Astra

Moderator
Aw Tracy!
I've just posted in another thread about Gab's good news, I'm so sorry this has happened since.
It's ok to vent, cry or whatever hun
We're all here for you.
Fingers crossed for Monday, hope it's a good outcome.
Have a stress free peaceful weekend
xxx
 

DustyKat

Super Moderator
Oh T, :(:(:( . I wish I could be there with you now. :hug:

I reckon it's a good thing they will have 3 urological surgeons in the OT. I think maybe they are doing that because of Gab's age and in their own words......we won't know for sure until we get in there. They won't want to make any definite decisions about treatment without consulting with someone else (3 heads are better than one), they want the best possible outcomes for Gab's. I can't say for sure T but I know Roo's problems with her kidney were long standing and she certainly had Hydroureteronephrosis and the renal ultrasound 3 months post op showed everything was back to normal. I just hope this may give some glimmer of hope to you.

"The terminal ileum, ileocecal valve, cecum, and proximal ascending colon are unrecognizable, caught up in an inflammatory mass of clumped bowel, inflamed fat, and lymph nodes in the lower right quadrant."...
This is where Sarah's disease was located. Perhaps Gab's has a little more ascending colon affected but I think Sarah had a more ileum. I know it's bloody hard T but try to focus on the word proximal ascending colon, to me that indicates it affects only the first part.

I just don't know about the ileostomy T. Are they preparing for the fact that there may be too much inflammation present? I know that if this is the case they will do it so they can preserve as much bowel as possible. Godammit T this is my biggest fear with Matt as well, they still haven't ruled it out with him. :(

I would be crying T, hell everyday I do Matt's flush and dressing and look at his tummy I just about cry at the thought of them cutting into my baby!!!

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

It's so bloody hard and unfair but we are all here for you and Gab's T.

Sending you mega loads of (((HUGS))).....:hug::hug::hug:
Dusty xxxxxxxx
 

Crohn's Mom

Moderator
..."Inflammation extends cephalad from here to contact the proximal transverse colon, probably a fistula. There is also extension to at least one, but probably two more proximal ileal segments."
(that's more of the "findings")

Are the transverse and ascending colon the same thing ?


and btw...that "alien baby" is what is obstructing the ureter and causing the hydoureteronephrosis. It does ease my mind a tad bit to know that Roo's kidney was involved as well and she is ok. Maybe there's hope? I know Roo went undiagnosed for a long time; Gab may as well have seeing as how none of the treatments have fazed this damn thing yet !

What a mess !! :grumpy:

Dusty..I can not even imagine what you are going through with Matt ! You have been through hell and back with Roo and now watching a second child go through this...and still...not knowing !!

Sending the hugs right back for you !! (all of you! ):hug::hug::hug:
 
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Oh MOM.G....Gentle Hugs Girl! You have every right to Worry, Vent & let your feelings free here! Dusty is right 3 Urologists are better than 1!

In answer to your ?. The TRANSVERSE colon is the part above the belly button that goes across your abdomen. If you follow that from your left side to your right side & continue down the right side towards your appendix this is the ASCENDING colon. At the end of the ASCENDING colon is the cecum, appendix, & where the small intestine or ILEUM meets up with the colon. I hope this helps.

Dusty yes I will worry ..... but not as much as my DH will get to see him twice during the week. My husband is a DJ on the side & they will have a dance for the kids during the week. Also they have country line dancing another time & he will help out that DJ. So he will be able to see for himself how he is. As for the Dr.s appt. today....(minor grumble) I felt like I was at a fast food drive through. Daniel is doing good & the Dr. was rushed so in & out we were. Minor are his issues compared to so many here. But he all in all he is pleased with how he is doing. He wants us to keep a close eye on him as the C-Diff could have caused progression & that 70% of kids his age end up on Imuran in the first year of DX. His problems with C-Diff, Strep, Stomach Bug, & other sicknesses has masked how his Crohn's is really doing. At least the blood levels are good. We don't go back till the end of June.

Joan....The Brood is good. BTW I love your name! It was my mom's & my middle name!

Gotta cut this short I am off to work. Work nights & it's my weekend!

Many Hugs to you ALL! Night Night!
 

Crohn's Mom

Moderator
Thank you so much for that explanation! I was literally putting my finger on my tummy and tracing the Transverse around to the Ascending, etc..LOL . Makes perfect sense to me now...Trans = across; Ascend = down; whoopie ! :)
At least this nasty disease hasn't gone around the full loop yet !
Trying to stay positive ...trying...tryi...tr...:yfaint:
 

Dexky

To save time...Ask Dusty!
T, I'm glad to see you in such good hands! I know how frightening those medical reports can be. They sound so cold and indifferent like they are describing some inanimate object. Hey, that's your baby they're talking about!!! Come Monday, it'll be alright....
 

Crohn's Mom

Moderator
Thank you Mark :)
Sometimes those black and white words can get ya where it hurts. I guess it was really no surprise when I read it; It just makes it more real.
Having the urologist show us the scans of her kidney, and how swollen it is...and then telling us, uh OH, there's a UTI here's some more medicine...it scared me into thinking that not only has the bowel trouble been getting worse since the scan, but also the kidney?
I will keep busy getting things ready for our stay on Monday, try and spend a little quality time with my 2 sons before I don't see them for a week, and try and breath ! (just a little)

Everythings going to work out....I just have to keep that in mind ! Afterall, I'm of no use to her if I go completely insane right ??:ylol:
 

DustyKat

Super Moderator
@T,

How are you today hun? Well aside from worried as hell! :lol:

Are you far from the hospital?

I'm sitting here today thinking this will be me in two weeks! Yikes!

Thinking about you guys and sending loads of healing (((THOUGHTS))) and (((HUGS)))......:wub::wub::wub:

@Mom,

It is so great to hear that Daniel is doing well, nothing better than good news! YAY! And even better that DH will be able to see Daniel at the camp! I so hope all continues to go well with your brood..........:ghug::ghug::ghug:...........hugs for all the brood. :):):)

Dusty.
 

Crohn's Mom

Moderator
I'm doing ok today...thanks Dusty !!

Just been busy trying to keep my mind busy....I recently bought a new computer so I have been busy trying to clean out the old one and reset it to factory setting so I can pass it along to my brother who doesn't have one :tongue:

I have been thinking about Matt's surgery as well and how close it is to Gab's :ghug: April 7th right ?

I can't believe it's time for her surgery already ! Tomorrow should go by quickly, I hope. We are about an hour away from the hospital. I reserved a nice suite for us to hang in tomorrow so she can have a little privacy; Im sure the prep will be YUCK !! Then we are only about 5 mins away from the hospital the next morning.

I was going to pack everything today but I just couldn't wrap my mind around it. I should write a list, but my brain isn't functioning long enough to do that ! haha...I will forget quite a bit I am sure and regret not having things :lol: At least I know I will have my handy dandy lap top and charger ! Most important ! :lol:

I will be sure and update as soon as I know anything on Monday...or before if needed :tongue:

Thanks to everyone for your thoughts, and kind words and consideration !!
I know my girl's gonna pull through this with flying colors ... and then it's Matt's turn and so will he !! They are FIGHTERS !! :voodoo::voodoo:
 

DustyKat

Super Moderator
Awww, that will be so lovely to spend time alone with Gabs before her surgery. :wub:

Haha I'm anal, I have started putting things aside now 'cause I know in 2 weeks time I will be useless!! Airline tickets booked....check, X-Rays.....check, paperwork.....check, magazines......check.....:rof: Bet I still forget something though! :ybatty:

Yep, Matt's surgery is the 7th of April. We fly down to Sydney on the 4th for Matt to attend all his pre-op work up on the 5th.

Sending you and Gabs all the luck in the world for a wonderful outcome and very uneventful and speedy recovery.....................

:goodluck::goodluck::goodluck:

Loads of love, :hug::hug::hug:
Dusty

PS. I'll be like a cat on a hot tin roof waiting to hear how things go but of course there will be far more important things on your mind!!! :wink:
 
Oh T. I am so sorry for all of this. That is some scary stuff when they go as far as putting the marks on. That is my battle right now, trying to prevent an ostomy. Lucas, poor kid, can't even touch his stomach without me jumping all over him.lol Wishing you and Gab the best of luck tomorrow. Hopefully, this will all be a distant memory soon and Gab has many years of good health. Sending healing prayers to Gab and strength prayers to Mom. FINGERS CROSSED( hey it worked for Dusty).
 

AZMOM

Moderator
T - Gab's gonna do GREAT. I just know it. We'll be waiting for the update!!!!

Love you all -

J.
 
Tuesday we repeat blood work and find out how well things are going. It's amazing how a little piece of paper can burst your bubble.

Hugs to Dusty and T who need them.
 
Mom.....I've been thinking of You & Gab all day! Sending lots of positive thoughts your way! It's good to know you got the most important things ready to go! That there PUTER! :biggrin: All kidding aside Know their are Many Across the WORLD Thinking & Sending Positive Thoughts for a very boring Surgery!
 

Crohn's Mom

Moderator
Thanks everyone ! :Karl:

just a little update :

We had a pretty rough day today, but she has made it through and is now sleeping. The poor girl had so many medications to put in her little body, I don't know how she did it ! She managed to keep everything down until about an hour a go...then she vomited a bit. (thankfully, it was just a little acidy stuff and not the meds).
She is resting peacefully now.

It's so funny how our children can become "adults" and yet they will never stop being our babies. I just honestly wanted to swaddle her in a blanky tonight and rock her and hold her and tell her it's all going to be ok :ghug:
Or maybe I just wanted my mommy to do that for me .... :eek:

I am so happy to have found this forum, and just in time ! I can't tell you all what it means to me to have such support, and love and kindness in my life right now.

Hopefully, after Gab's surgery, when she is COMPLETELY HEALTHY, I too can give some advice, and support, and love right back to everyone. I have tried where I can, and don't feel as if I am "intruding". I am sure I will get more comfortable as I go along and then you all will be telling me to SHUT IT! :yrolleyes::lol2:

I have found myself logging on here today for words of comfort...not just for me...for anyone...just to read someone else's stories. Reading these brings a strange calm over me and my anxiety about the surgery tomorrow...so thank you for that !

I will be sure to update ASAP tomorrow! I can't wait to tell everyone the great news !!!
(see...lil ms positive is creeping back):hug:

Much love and respect to you all !!
 

DustyKat

Super Moderator
Hey T and Gabs, :bigwave:

You probably won't see this before Gabs op and I will most likely be asleep when the op is happening.

I just wanted to wish you both one final good luck and tell you that I am wishing, hoping and praying for the best possible outcome for your baby. I feel your pain and worry T and I want you to know that this will be a turning point in Gabs life, a turning point for the better. These times are the most difficult, your thoughts and emotions are like a roller coaster. One minute you know that this is the best thing for her and the next thing you know you are doubting yourself all over again.

Roo has only gone from strength to strength after her surgery and I am hoping and do believe that it will be the same for Matt. I also believe it will be the same for Gabs. So here's to good health and joyful times ahead for you both as you rejoice in her new found vigour, strength and happiness.

:goodluck::goodluck::goodluck:

Lots of love, :wub:
Dusty
 

Dexky

To save time...Ask Dusty!
Hey Tracy, we've not experienced any surgeries but I've marveled at the success stories on here. Tomorrow's gonna be a brighter day for Gabs! I can't wait to see your happy update!! I hope you have someone there today to hold your hand, if not, imagine we're all there with you:).
 

DustyKat

Super Moderator
Dusty, so glad to hear that Sarah is on the mend, and I'm happy to report, so is Jess!
She's coming home 1st April for a month, and yes it's so good to 'see our kids in person!!'
I am so happy to hear this Joan! :banana::banana::banana:
Bet you're counting down the days............not long now! YAY! I know you will have a fab time together........:hug:


Tuesday we repeat blood work and find out how well things are going. It's amazing how a little piece of paper can burst your bubble.
I hope the blood work is all good Zoodles! Fingers and toes crossed! How did the Humira renewal go?

Thanks for the hugs! Sending loads of luck your way for positive results and easy renewals............:goodluck:


Dusty. :ghug:
 
First of all happy vibes out to everyone.

Quick question. How many parents in the US have a 504 on file (at school) for their child? My son's teachers are all working with us but the band director is being an irrational jerk. My son is crying himself to sleep over his first year in band. I think the director has found somebody that he thinks is an "motivational example" for other students and this nonsense will stop. Have requested conference. Just dumbfounded that something that is supposed to be fun and enriching is a source of extreme stress.

Renewal going as expected- still trying to find the correct phone number for preapproval. Dealing with the inner rings of insurance hell right now.
 
Waving to You ALL!

((((((Gab & MOM))))))) Just a quick note to let you know the first time you see her after surgery will be tough because of the tubes & stuff. But as the days go by & her strength returns & the tubes are removed. All will be a distant memory! We are in your back pocket today & as the days to come pass Cheering you all on with Warm Hearts of Healing!!!

ZOODLES......... I am seeing steam on your behalf!!!! :mad2: What a _ _ _ !!! It just makes me so mad. I wonder how he would feel taking the strongest laxative 24/7 for a few weeks & sit in class turning green with pain & what not!!! :voodoo: This stress is so not good for him at all! Go to that conference loaded for Bear...but do it with class & sweetness gets you farther ! We don't have a 504 as we have a group a teachers & school administrators that are very understanding. That's not to say we won't ever need it though. Daniel has missed over 30 days this school year. We did however get medical assistance through the state. I carry the insurance for the family & it's good but the deductible is through the roof. The state insurance is great & covers all the deductibles, copay's with meds & office visits. It has been a god send. There is no way we could take him to the Dr's or do all the meds he has had to go to & take! The DX in my state at least is I believe an automatic reason to get the Medical Assistance. Not sure to what degree of MA you get with what ever your income might be though? Look into it though! It's a lot of red tape but for us it's worth it! I hope this helps!

Dusty Counting down the days with you too! I guess it doesn't matter whether it's the first time or child....we still worry! It's our middle name! LOL!

Off to sleep .... only to wake & hear some news!:ghug:

:moon: This guy is sleeping with me for the afternoon! Enjoy your day Everyone!
 
I never thought we would need a 504. His core teachers have been amazing and this is still mind boggling. 5th grade band?? I am on the board that awards teachers grants so this should be an interesting meeting.

We're working through the state disability insurance- it's currently under review. I hope to hear something about it's status within next month or so. How long did it take to get it processed in PA?
 

DustyKat

Super Moderator
@Zoodles, That is so awful! What the hell is wrong with that guy! Good luck with the conference and let us know how things go. :hug:

I feel for you guys and the insurance system. Still keeping my fingers and toes crossed that it is all sorted soon.

@Mom, ahahaha.......counting, worry, counting, worry. Sure helps having you guys along for the ride! Thanks so much.......:hug:

Have a good day sleep!

Dusty. :wub:
 
Zoodles I can't remember exactly but he was DX the last days of September & by the middle of November we had access cards. The insurance cards arrived in the very beginning of December & activated the middle of December. I know they went back retroactive for 3 months on unpaid bills. They started to pay for copays for everything as soon as we got the access cards. I am thinking a little over a month. Our 14 year old son the only one that doesn't have an IBD or IBS has ADHD. We applied for him at the same time & he also got it too. Wish we had done it years ago for him! keep plugging & I hope it comes through real soon. As for being on the board....mmmm Poetic Justice as the Band needs a lot of Grants. I am not so sure how things will go when we get in the High School. We may need one then. We had some issues in past with an older son who had another health issue in High School.

Dusty a Super Dooper Loop ride or Sudden Drop ride? Lol!!! It 'twas a good sleep. Now it's off to to be a "mom" & then to work!!! BTW has anyone heard anything on Gab? I will go read for a few & see!
 

Crohn's Mom

Moderator
Update: surgeon just called down and said "going good. Another 1-2 more hours."
Anticipation is killing me... Were going on 6 hours now!

Will update more soon :)
 

DustyKat

Super Moderator
Hi T!

We're all hanging in there with you! So great to hear that everything is "going good". Thinking of you and Gabs. :hug:

Dusty. :wub:
 

Crohn's Mom

Moderator
I'm so sorry I'm not goin to write much. She pulled through and is in recovery.
She has an illeostomy (6 mos min. W a 50% chance of reversal)
Doctor said he's never seen anything like what he saw in there!
Over 100cm of intestine removed.

I am spent. :(

Thank you all for your prayers! It means so much!
I will update more when the flood stops....
 

Dexky

To save time...Ask Dusty!
Sorry for Gabs T!! I know it isn't the result you were hoping for but she should at least have a long break from the pain. I hope she doesn't have much trouble adjusting to the bag. I know it'll be hard for someone so young to accept. Bless both of your hearts!! Hang in there!
 

DustyKat

Super Moderator
Oh Tracy, my heart goes out to you and Gabs. I so wish we weren't so far apart. :(:(:(

I know well the feeling of not wanting to talk, when the emotion is so overwhelming and raw. Just know that we are all here for you both, that we understand and you don't need to say anything.

You are both in our thoughts and prayers and we will be here waiting for you when you are ready. You are not alone T..........

:hug::hug::hug::hug::hug::hug::hug::hug:

:hang: All my love to you and Gabs, :wub:

Dusty.

We will talk later. xxxxxx
 
I'm so sorry I'm not goin to write much. She pulled through and is in recovery.
She has an illeostomy (6 mos min. W a 50% chance of reversal)
Doctor said he's never seen anything like what he saw in there!
Over 100cm of intestine removed.

I am spent. :(

Thank you all for your prayers! It means so much!
I will update more when the flood stops....

hi Crohn's Mom... i've just spent a few minutes updating on everything leading up to Gab's surgery. my apologies for not popping in here before now, there seems to be just so many new threads and posts to get through every day!

i just wanted to offer some words of encouragement and support... i'm glad that your daughter has finally had the surgery, by the sounds of it, all that nasty stuff had to come out, and her body now has the chance to recover and give her a good quality of life back, and you a lot less worry..

i know you & Gabs weren't really expecting the ileostomy, and in this kind of situation it is hard to accept at first, but speaking from experience, it can be the most amazingly positive step when someone has been so ill previously. you'll both be on a learning curve for a little while, so if there's anything you need to know, either shout out in the stoma subforum, or if you like you can pm me privately - if i can help, i will.

try not to dwell on the amount of intestine she's had removed - i lost all my colon in one operation, and i'm still here to tell the tale.

wishing Gabs a complete and speedy recovery, and i hope you can calm down a little now and relax. it's a been a bumpy ride for you too.
 

AZMOM

Moderator
OH Tracey!!!!!!!! What a day!!!!!!!!!!! My goodness...............

I know this isn't what you were hoping for and you can grieve for the lost centimeters all you need to! You can deal with anything when you know what it is.......I usually like to add to that.......you can deal with it but you do NOT have to like it. No one wants a day like that for their child and I'm so sorry you have been through it.

Like you, I'm always looking for the silver lining. So here's a little of the one I see.........that ol' nasty, jacked up, made your baby feel bad, piece of bowel is GONE. This could be the best thing that has happened to her even though it doesn't feel like it at the moment. I mean it!!

I have a dear friend in AZ who's son was NEVER in remission. From the age of 10 until he was 18, they fought having surgery. He finally had it and that kid is SO happy. He has never felt so good. And you would NEVER know unless he chose to tell you.

Okay, enough sunshine, you go love your baby. Try to take care of yourself. She's gonna need you big time. And I'm gonna take some time to pray for you both - specifically, that today is the first day of Gab's new start with healthy insides and for the strength you need to be the great Mom we know you are!

Big hugs - wish I could give them to you in person.

J.
 
Oh dearest MOM!!!!! I can't say it any better than what everyone else has said it!!!
Extra Special Hugs of Healing & Suport!!! Go ahead & let it all out!!! We are here!!!
(((((((MOM))))))) (((((((((GAB)))))))))
 

Astra

Moderator
From one Mum to another, I can't imagine what you're thinking, or feeling but I think I know!
I wish Gab a speedy recovery, and a happy, very long, healthy life without the diseased
piece of crap that has kept you both so distressed for far too long!
Oh happy day!
Lotsa hugs!
xxxx
 
Oh Tracey. There are really no words to describe what you are both going through. But rest assured there are many who have gone down this road before and they are a wealth of knowledge and support for the both of you. Sending big hugs and strength to you. Stay strong, you are doing an amazing job for your daughter.
 

Crohn's Mom

Moderator
Thank you everyone ! :)

I posted a "new thread" because I wrote a long one LOL.

It's "Our Surgery Journey", in the Parent's section

I figured I should probably stop hijacking Dustys worry thread....other peeps need some space to worry too ! hehe
 
Well my issue is resolved. I felt a bit like Cartman "respect mah authoritah" but they are backing down and doing positive reinforcement for all students.

Worried that my son is a little type A and need to teach him when to not sweat the little stuff.
 

Dexky

To save time...Ask Dusty!
Worried that my son is a little type A and need to teach him when to not sweat the little stuff.
When you finish with him, could you teach me too Z??

Glad the insurance and school worked out for you!!
 
So anyone want to take a guess on how long it takes to get bloodwork results? K had hers done last Thurs afternoon and I haven't heard anything back yet. I am anxious to know what her levels are and if the meds are working for her. I hate the waiting game.
 

DustyKat

Super Moderator
We get all the run of the mill tests back the next day at the latest. Matt had bloods done yesterday morning (Thursday) and I will get the results this morning.

Don't wait, give 'em a ring!

Dusty. :)
 
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AZMOM

Moderator
Jen - They are done. Most the same day they are drawn. If you can, just go to the hospital and pick up a copy! That's what I do every time! (I'm more than a little crazy though - lol)

J.
 
Jen The waiting is so annoying! A lot of times we have to wait for the Dr. to review them before WE get the results. Not just with the GI Dr.s but with any of the Dr.s ....mine, my DH's, EVERYONES! It's very frustrating! One thing that I have had to do is get a Back Bone a few years ago when going through some testing for something for myself a few years ago. I find calm & level headed gets me farther....even when you don't feel any way near that!

Zoodles I am glad you got things smoothed over! The other is easier said than done!
 

AZMOM

Moderator
Well today I'm officially glad the scopes are scheduled. I had my "weekend viewing" of Claires stool. By the way, it is no longer "coconuts", we've moved on to "guava". "coconuts" is so passé.

It is completely unformed and plenty of bright red bleeding and mucus. Not enough to make the water red but enough that had we not already been scheduled for something, I would have been making the phone call!

I think she's not feeling as good as she normally does but her answer is always "fine" because....well.....she's Claire.

I hate Crohn's but love you all-

J.
 

DustyKat

Super Moderator
Dammit J, :(. I guess you're feeling mighty [email protected]#$%* at the moment!!! I hate the whole lookin' and feelin' good one minute and then BAM!

It's good to know the scopes are already booked and I will be waiting right along with you! Do you think they will move them forward?

Awww Claire is such a trooper, I wish I was there to give her a big squishy hug.........:hug:

:hang: in there J, you're doing a brilliant job!

Dusty. :wub:
 

DustyKat

Super Moderator
Well my issue is resolved. I felt a bit like Cartman "respect mah authoritah" but they are backing down and doing positive reinforcement for all students.

Worried that my son is a little type A and need to teach him when to not sweat the little stuff.
Sorry I missed this Zoodles!

Go Cartman! :ylol:. It is so great to hear the issue has resolved. Keep us posted on how things are going!

Dusty. :)
 
Has anybody's child has stress fractures? We are suspecting another foot stress fracture- I don't know if it is related to my son being on steroids (no significant calcium sources or supplements at the time) Humira or bum genetics.

Well- bum genetics covers so many things in this forum never really thought about it.
 
Julie...I love Claire's descriptions! Guava & she is "6"!!! I didn't know what the stuff was till a few years ago! LOL! She's got the Brains!!! As for feeling good one moment then beyond YUK the next! Well we all know this disease SUCKS!!!! But it feels good to repeat it!!!!

Zoodles....mmmmm now that I think about it. My oldest son John was DX in college about 4 years before in High School he had a stress fracture in his foot from playing on the Soccer team. But now that I think about it. He was having stomach problems then but wasn't saying much to us as he just thought he had the "Family" stomach problem (eat something & then end up in the bathroom within an hour). I think he was learning to cut some foods then that bugged his stomach one being milk & he never was a milk drinker. It makes me wonder just how long he had it. He was DX 5 days after his emergency surgery for 2 abscesses where they removed 7 in. of colon, the appendix area, ileum-cecum valve, & 7 inches of the ileum. That's were a lot of nutrients are absorbed & coupled with his lack of milk! It could be. Dare I say "FOOD" for thought! :study:


Sometimes I wish "CROHN'S" had a brain! Then it could understand when I tell it to ..... :kissgrits:!!!! :D :D :D :D :D :D :D
 
As well as having 2 son's with CD. My oldest son with CD his wife was DX with UC a month after their son was born. That was 2 1/2 years ago & it looks like she is gonna have her colon removed. The remicade is not working but they are doubling her dose & giving it to her every month now as a last ditch effort. Today she had a sigmiodoscopy (sp) & the surgeon told her "Your colon looks like some one picked it up and pulled it across the parking lot."! Yep that's how bad it was! Dr's sure have a way with words! The surgeon also told her that they will have to do 3 surgeries to get the job done. Because she has been on too many steriods & there is so much damage! I worry all the time but know they will get through it!
Needed to vent & let the worry out!!!!!!!!
 

DustyKat

Super Moderator
Hey Mom!

Whoa, that sure is a lot to deal with both for you and your son and DIL! I hope all goes well with the surgeries. Keep us posted Mom, do you know when all this is going to happen?

Sending loads of love, :hug:
Dusty
 
Ok what's on my mind today fits in this thread. Kailynn has a sore throat and for the last two days her temp is 96.2. She's just feeling crummy and I'm not sure what to do with her. Any suggestions? I just find it odd that her temp is so low
 
Jen there can be many causes to the low temp like anemia, hypothyroidism, & infection. Since she has a sore throat I would get her checked out. Recently Daniel had strep throat but his symptoms showed up like CD, major diarrhea & nausea. No sore red throat or swollen glands. We thought it was a flare & almost missed the strep. I'm not sure what your daughter is taking for her CD but my son seems to get a nasty bug every few weeks. Better to be safe & get things checked. The meds our kids take are powerful drugs & many have major effects on their immune systems. Good luck & let us know how things go.

Dusty there is no set date yet. She had her first dose of the max you can have of Remicade yesterday. The Dr's want to see how long it helps & go from there. She will get it every month if it works good. The sad & frustrating part is she just graduated from nursing school & can't get a job cuz she is too sick! Besides this always at the back of my mind is the grandson having both parents with IBD! He already has eczema.... Since he was a few months old. Some days the head spins with it all!

Hugs to all the other worry warts out there!!! Sending a smile in hopes it will get rid of few of the warts to All!!!
 
Thanks for the thoughts MomofIBD. I set up an appt this afternoon for her. The pollen is really bad here so it could just be allergies but I'd rather be safe. I'm going to take her and her younger sister who's asthma is acting up thanks to the pollen....poor baby coughs all night long.
 
First of all happy vibes out to everyone.

Quick question. How many parents in the US have a 504 on file (at school) for their child? My son's teachers are all working with us but the band director is being an irrational jerk. My son is crying himself to sleep over his first year in band. I think the director has found somebody that he thinks is an "motivational example" for other students and this nonsense will stop. Have requested conference. Just dumbfounded that something that is supposed to be fun and enriching is a source of extreme stress.
Hey Zoodles,

I did a 504 plan with my son's school this year. I downloaded what they had at the ccfa website, deleted what didn't apply to my son, add what did and took it in to the schools guidance office. He was not in school for the 3rd and 4th quarter last year, missed over 6 weeks of work due to a guidance counselor who didn't know how to do his job and heading into 8th grade (with the same guidance counselor) I knew if I didn't do something no one would. Funny when I walked in with it he asked who put it together. I told him it was put together by my attornies, some doctors and psychologists. He said, "Well, you might need to bring your attorney with you if you want a 504 meeting." I told him, "I'll bring mine, if you'll bring yours. Then we can swap notes about how well you've been handling my son's education." Needless to say, I got the meeting and the plan approved - as is without any changes.

BUT, we had a teacher who was a jerk... Made NO sense whatsoever why she did what she did... Alex' sat next to the door in every class and no longer needed a bathroom pass (most of the teachers hand out 2-3 passes and once you use your passes for that class, you CAN NOT go to the loo in the class for the remainder of the quarter - crazy eh??)... though not required Alex would still raise his hand to let the teachers know he was leaving. The stinker teacher - has a visual impairment where she can't see peripheral - when Alex would raise his hand to let her know he was leaving, she'd give this huge sigh... and a "sigh... geez yes Alex" or "whatever Alex" or something equally unnecessary.

Finally, I said to her... "You shared with my son and the class that you have a visual impairment yes?" (Yes, she said.) I said, "Well how would you feel if every time you tripped, dropped something and couldn't find it, bumped into a door, missed a handshake or someone waving to you I said to you.. 'Geez... didn't you see that.' 'Man... you're kidding, trip again??' 'Whoa, can't you do something about that??'" She cried.

Now I wasn't trying to make her cry... but I was sick and tired of her making my son cry, which makes me cry.

In the end, I've had enough with the schools and their inability to be kind, caring, edifying and educational... So in talking to our pediatrician (whom I LOVE!!), she wrote a letter asking him to be home schooled. The county is still required to educate him, so they provide the tutors. We are out for the remainder of the year (hopefully) and then High School... will see then.

Mean people suck.
 

DustyKat

Super Moderator
@Mom, I sure hope the Remicade helps for a long time! It would be hard not to think about your grandson and what the future holds. Huggin' ya and smilin' all at the same time Mom!......:hug:

@Jen, Good luck with the appointment and keep us posted!......:hug:

@Shell, Way to go Mum!!! Just a bugger that you have to go through all that shit in the first place!......:hug:

Dusty. :)
 

AZMOM

Moderator
3 CHEERS FOR SHELL! :)

Zoodles - I have a 504 in place for Claire. It is a GREAT way to keep everyone on the same page. I say do it, do it, do it. The first time you have a less than empathetic teacher, you'll be so glad.

Hugs,

J.

PS I'm late on this conversation and trying to catch up so if this is a stupid response, just ignore it! :ywow:
 

Dexky

To save time...Ask Dusty!
Haha Shell!! The only thing that could have made that better is if you'd punched the %^&* in the face!! OK, not really but still there was a glimmer of hope:)!!
 

AZMOM

Moderator
Jen - We got ours in place at diagnosis. This was the recommendation from the parents in the pediatric support group. I was a little lost at the time. But just a couple of short months later, I was glad I had done it!

J.
 

Crohn's Mom

Moderator
In my opinion...I would say as soon as you start thinking you may need a 504 plan...then just start the process then. Better sooner than too late :)
 
My son's physician gave us the 504 template from the CCFA after he was diagnosed. I never filed it. Just couldn't emotionally handle that this was a permanent life changing event.

Talked to the principal, nurse and teachers. I know we need to make a change for next year and get it filed.
 

AZMOM

Moderator
Yes, and Zoodles, it doesn't have to be as long as the CCFA one!!! Ours is a single page. :)

Hugs, J.
 
Great, right now all I have in place with the school is a statement from the doctor about missing days and reporting unusual infectious diseases.

Got results of bloodwork last night and this was the first normal panel in a year and half. I'm feeling great. Hope my good luck spreads throughout the thread
 
I AM MAD!!!!!! Worried too! It looks like I spoke too soon about being on good grounds with the school! Daniel missed a day of school 2 weeks ago because of a sinus infection. The Peds put him on bactrum & 2 pills caused vomiting & 30 trips to the Loo! Took him off the med & within a day he was almost back to normal! Crohn's normal! Well we just found out that day was unexcused because school/state policy/law/rule says he has missed 22 days of non consecutive days & thus now has to have a Dr's written excuse stating WHY & FROM WHEN to WHEN..... And must have indication of debilitating need for! This is for EVERY absence & also tardy!!!!! So if Daniel is on the Loo & he can't get off I gotta take him Loo & all to school!!! Or get charged $300 per Day or Tardy!!!!!! So will the 504 cover my "Rear Bumper" for this????? If it does......I almost have a meaning to download the WHOLE CCFA's 504 & whistle dixy as they play my tune!!! Sorry but can you tell I am peeved. It's just that I have asked several times & have given many Dr's excuses to cover that BUMPER only to be told all is ok not to worry & now WHAM!!! It just smarts & I have been on the up & up with them! In 6 previous school years
he has only ever missed maybe 10 days total in all those years put together!
Also if it weren't for his imune system being shot to HE?? from the steroids he
wouldn't have missed 1/2 those days or been as many late! Sorry I just had
to vent...I knew the other shoe was gonna drop I just didn't imagine that the
sucker could end up being worth $300!!!

I will keep my cool & be the utmost of politeness ........ But would so love to turn around & show them the BUMPER & tell them.....
:kissgrits:

:hug: To All as I am gonna try & sleep so I can work tonight!
 

DustyKat

Super Moderator
@Zoodles, Woohoo, great news!!! May it keep on keeping on!!! :banana::banana::banana:

@Mom, Holy cow, I'm gobsmacked!!! Sending (((HUGE))) hugs your way.......:ghug::ghug::ghug:

@Carol, I'm with you hun, get that 504 underway! :eek2:

Sorry guys I can't offer any advice on this one but by the sounds of it I reckon all you Mum's and Dad's in the US should get one of those 504's and shove it down the school's throat or up their a***!

Dusty. :)
 

AZMOM

Moderator
Carol - It is fluid. You have to have "formal" review and revision at least annually. In Claire's it says "or more often as needed". They welcome me to call and change things anytime!!!

Let me know if I can help you. It is a good thing to have in place just to ensure everyone is on the same page.

Hugs,
 
glad to join you all

Been reading some of the thread. This is like free psychotherapy for me. My son was diagnosed last July. He usa 16yo junior in high school. The year has gone ok and he is only on pentasa right now. A recent flu made him drop 5 lbs but doctor doesn't want to start anything new. That's ok with me because I am majorly into nutritional management. I don't believe a low residue diet can be good for anyone. I cook a bunch of stuff with almond and coconut flour that tastes pretty decent. That and "naked fruit" drinks seem to do as much or more than the pentasa. My constant worry is the ridiculous work load today's high school junior has. He has worked so hard for so long. Without this problem he could probably go to an Ivy league college if he wanted to but now we question will he be able to go away from home at all. I would love to here about anyone's college experiences.
 
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