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03-21-2011, 08:45 PM   #61
Dexky
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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!
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03-22-2011, 12:53 AM   #62
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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..........



All my love to you and Gabs,

Dusty.

We will talk later. xxxxxx
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03-22-2011, 06:12 AM   #63
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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.
03-22-2011, 10:33 AM   #64
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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.
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03-22-2011, 02:40 PM   #65
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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)))))))))
03-22-2011, 03:23 PM   #66
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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
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Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery




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03-22-2011, 04:06 PM   #67
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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.
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03-23-2011, 01:47 AM   #68
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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
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03-23-2011, 06:38 PM   #69
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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.
03-23-2011, 09:20 PM   #70
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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!!
03-24-2011, 10:54 AM   #71
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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.
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03-24-2011, 03:20 PM   #72
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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.

Last edited by DustyKat; 03-24-2011 at 04:33 PM.
03-24-2011, 03:32 PM   #73
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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.
03-24-2011, 09:59 PM   #74
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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!
03-26-2011, 07:46 AM   #75
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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 passť.

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.
03-26-2011, 03:02 PM   #76
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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.........

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

Dusty.
03-26-2011, 03:10 PM   #77
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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! . It is so great to hear the issue has resolved. Keep us posted on how things are going!

Dusty.
03-26-2011, 04:13 PM   #78
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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.
03-26-2011, 07:12 PM   #79
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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 passť.
LOVE THIS !!
03-27-2011, 07:52 AM   #80
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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!


Sometimes I wish "CROHN'S" had a brain! Then it could understand when I tell it to ..... !!!!
03-28-2011, 09:16 PM   #81
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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!!!!!!!!
03-29-2011, 05:59 AM   #82
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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,
Dusty
03-29-2011, 06:19 AM   #83
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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
03-29-2011, 08:30 AM   #84
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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!!!
03-29-2011, 10:28 AM   #85
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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.
03-29-2011, 01:05 PM   #86
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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.
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03-29-2011, 01:19 PM   #87
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@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!......

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

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

Dusty.
03-29-2011, 03:37 PM   #88
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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!
03-30-2011, 05:13 AM   #89
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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!!
03-30-2011, 01:28 PM   #90
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This is a question off the posting by Shell. At what point is it a good idea to get a 504 put into place?
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