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Success Stories

Just wanted to add an update here-Izzi is still doing great after 16 months on Tacrolimus. She has very few symptoms and gets monthly labs. Wishing you could all post here as well...(((HUGS)))
 
Not really a success story, more of a snippet...

DS came home upset because his gym teacher made him go back in the locker room and put sunscreen on since they were going outside today. I did a happy dance! It means the gym teacher read his 504 plan AND didn't take any whining from DS.

Also found out he got pulled out of science class to go see where they are going to keep his special "germ free" keyboard for use in the computer lab and the library. The librarian said she'll spray it down for him every day.

And then, at the football game I sat next to his geography teacher. She said all of DS's teachers were called for a meeting to specifically go over his 504 plan and to consider ways to make his last year of middle school a positive experience since the last two years have pretty much sucked because he'd been so sick. I just about cried.

It takes a village, right?
 

Jmrogers4

Moderator
I think I must have something in my eyes (they are a little misty). That is awesome Mehita. I hope he has a fabulous year!
 
Just an update. My daughter is doing very good on remicade, once in a while she gets one loose stool and once in a while in the morning gets nausea and gas. But I guess is due to eating everything she wants. Her vitamind D went up from 27 to 51. Her magnesium is 1.80 with a reference of 1.70 -2.20. Will talk to GI about it. Unfortunately I can't say the same about my son. He is getting more joint pain in other places, Finally after 30 days I got insurance approval for celebrex, I hope it works. His allergies are getting worse. He will be starting meds for that this week and going to pain clinic in one month. One day he is constipated and the other with loose stools. But on the positive side, we are getting closer to find medical treatment for him. His Vit D went up from 17 to 32.
 
Mehita - that is AWESOME news!!!

Araceli - glad you daughter is doing better - sorry your son isn't doing as well. Makes me crazy when people have to jump through so many hoops to get a med. My stepdad just went through the same this with Celebrex - he finally gave up and got a prescript for something else... grr! I pray they figure out what's best for him! Yeah for the Vit D increase!
 

DustyKat

Super Moderator
@Mehita - Thanks for the fab update! and it sounds mighty successful to me! :):):)

@araceli - So good to hear your daughter is well! :dusty: But so sorry to hear that your boy isn't. :( Good luck with the Celebrex, I so hope it helps with the pain, bless him. :ghug:

Dusty. xxx
 

CarolinAlaska

Holding It Together
Not really a success story, more of a snippet...

DS came home upset because his gym teacher made him go back in the locker room and put sunscreen on since they were going outside today. I did a happy dance! It means the gym teacher read his 504 plan AND didn't take any whining from DS.

Also found out he got pulled out of science class to go see where they are going to keep his special "germ free" keyboard for use in the computer lab and the library. The librarian said she'll spray it down for him every day.

And then, at the football game I sat next to his geography teacher. She said all of DS's teachers were called for a meeting to specifically go over his 504 plan and to consider ways to make his last year of middle school a positive experience since the last two years have pretty much sucked because he'd been so sick. I just about cried.

It takes a village, right?
It brings tears to my eyes to see people going out of their way to help. That is an awesome school.
 
Mehita,
So great to hear this good news!!!!!!
Araceli,
Wishing you guys luck with the Celebrex. Glad your daughter is doing well!
 
Hey all...

I'm sorry I've not been around much these last few months. I believe I mentioned we found a mass in my youngest right humorous bone when he fell and broke it. Best news was the mass is benign, diagnosed with fibrous dysplasia, unfortunate news is that it keeps breaking. We are on our 4th break this year :( (THAT's not my success story!! laughs... just one of the many things occupying my time.)

Success story: My Champ, Alex, is being inducted into the National Honor Society at his school tonight! I am so proud of him. He is currently ranks 10th in his class out of 337 :)

I am grateful every day that he tries as hard as he does. We were talking recently about what he considers his motto and how does he keep going - and it came down to two sayings. First is from Joshua 1:9 - "Have not I commanded thee? Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee whithersoever thou goest." (He had it hanging in his hospital room the whole time he was in the hospital, it was our Youth's theme the year he was diagnosed with Crohn's - http://www.youtube.com/watch?v=LVHC0vsIeeA) and the second from Kelly Clarkson, "What doesn't kill you makes you stronger!" :)

So very proud of him... Praying for all of your children...

(((hugs))) to all..
 

DustyKat

Super Moderator
Well done Alex! You are an absolute champion! :award2:

So wonderful to also hear that your youngest lads tumour is benign! Phew, what a relief iy must have been for you all. :ghug: I hope he is holding up okay and things soon settle for him and the breaks become a thing of the past! bless him. :heart:

Dusty. xxx
 
So this is the first time I have tried uploading a picture like this - but here's me and my crew :) (please ignore the extra pounds I've put on!!)... Little fella in his new cast and Champ with his NHS Certificate :)

Thanks for letting me brag on him...
 

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DustyKat

Super Moderator
What a gorgeous pic! :):):) Thanks so much for sharing.

Extra pounds where?! You look fab! If someone can pull off horizontal stripes like you do then there isn’t anything to spare! :thumleft:

Dusty. xxx
 

Jmrogers4

Moderator
That's great MLP, Jack switched to snowboarding about the same age and has never looked back. He loves snowboarding.
 
It's the little things, right?

DS hasn't been on (or needed) pred in almost five months now. That's a record for him. Aside from the minor bug New Years Eve, hasn't had a single stomach ache. He needed to get new shoes and pants this weekend... he's growing.

Thank you, Remicade!
 

DustyKat

Super Moderator
So good to hear both your boys are in positive territory mlp and Mehita. :):):)

It must be a joy for you both to see them kicking Crohn’s in the butt!
 
Violet, on dual therapy 8mos:

-has missed just 2 days of school thus far
-has a 4.0 GPA (lowest grade she has in a class is 96)
-is in FOUR clubs (Interact, SADD, HOSA and multicultural club) and is active in all
-looks and feels amazing
-has lost all 20+lb pred weight (d/c end of Nov)
-is always happy and upbeat
-is going to CAMP OASIS this year (last went in 2009) as an LIT (junior counselor)

I hate and fear the drugs and dual therapy BUT listed above are the results thereof. :eek:
 
We saw the GI on Monday and I just got a copy of his notes in the mail. Under "Current Health Status" is THE word we've been waiting two years for.

R.E.M.I.S.S.I.O.N.

This is the first time it's ever been in writing. That makes is official, right? Just like everything you read on the Internet is true. I'm not counting my chickens before they're hatched... he has two more weeks until his next infusion... but I am getting the nest ready :)
 
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We saw the GI on Monday and I just got a copy of his notes in the mail. Under "Current Health Status" is THE word we've been waiting two years for.

R.E.M.I.S.S.I.O.N.

This is the first time it's ever been in writing. That makes is official, right? Just like everything you read on the Internet is true. I'm not counting my chickens before they're hatched... he has two more weeks until his next infusion... but I am getting the nest ready :)
Congratulations! Enjoy it all!
 
Thought it would be fitting to share that Gus has just passed the ONE YEAR mark on Stelara! He had his eighth injection last week and is feeling great. He is looking forward to a pain free 14th birthday!!
 

Catherine

Moderator
Sarah begins University next week.

She has two part time jobs and is about to start a modelling course.

Her weight appears to have settled. She eating much better.
 

DustyKat

Super Moderator
My kids stories are at the start of this thread…so update…

Sarah continues to do well. She completed her undergraduate degree last year and remains at university in the first year of her Masters degree in Primary Teaching. Come the 10th of July she will be 8 years in remission.

Matt also completed his undergraduate degree last year and is now doing his Honours in Mathematics. He had his 3 year remission anniversary on the 7th April.

Feeling lucky and blessed and hoping it lasts a lifetime or until there is cure!

Dusty.
 
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Well honestly, Dusty, it couldn't happen to a better mama!!! You are so selfless with your continuous support, incredibly brilliant with your advice and inspiring with your stories.

Here's to the cure that will happen:cheerss:
 
No remission here, but thought I would post something positive.

My little man had a great day today, no pain :) A pain free day is a great day in our house, so I will take the little gifts when they come our way.

Thanks for sharing the positive side of this disease, it makes the battle a bit easier :)
 
Wow, reading all of your stories and can relate to so much! Love all the encouragement and support you all give. Em was diagnosed 1/2012 a couple days before her 11 birthday, in fact she got out of the hospital the day before her bday and that was a wonderful gift. She struggled for over a year after that diagnosis (it took 3 long years for her to be diagnosed), she was steroid dependent, on azathioprine, remicade every 6 weeks, tried the pic line- got a blood clot just above her heart. By April 2013 all her usable veins were collapsing and still no real changes. Sure, she was puffy-from the steroids, but still having pain and bleeding along with all the frequent bathroom visits. With much prayer and research I made an executive decision, I say executive b/c her doctor did/does not agree with me, I took her off the steroids (slowly) and stopped remicade and azathioprine. We've been treating her with diet, her doctor put the thought in my head when he first put her on a restrictive diet- chicken and potatoes, and told me in Europe they often will treat Crohn's patients with dietary changes and little to no medication. She's done wonderful! A few set backs here and there finding the foods she can/cannot eat. She's going through a slight issue right now, bleeding and back to the bathroom a lot, but I think it was the stress of (almost) going to her very 1st youth camp. Unfortunately she did not get to go due to the bleeding, but I put her back to the basics- chicken and potatoes, and she's slowly coming out of it. I'm in contact with her doctor and as long as she's improving he, reluctantly, gives me the green light. Food treatment isn't for everyone, just like medication treatment isn't for everyone. This is what I abhor about this disease: there is NO one size fits all treatment. I guess what I want to say is, I hope you all find something that will work for your situation and will give your families Peace and Hope! If need be, we will return to medication but for now we are doing the best we can. Going through this with ALL of you is by far the best help of all. We may never meet in person, but so many of you have encouraged me along this path as you are finding your way down it too. God Bless you all
 
Jschneider,
Your daughter sounds a lot like mine, mine was also diagnosed a few days before her 11th birthday. It took us a long time to find something that worked. Our daughter is currently on a lot of vitamins and alternative medications including Low Dose Naltrexone which was the miracle for us. Keep us posted on how your girl is doing.
 
It's amazing how many of us have the same story, I often think there's more to it than just fate. Why, all of a sudden, are all these children-some the same age- getting sick with the same thing?! I need to look into some vitamins for her as well, with the limited diet she has at times and they are at a crucial growing stage, it would be beneficial.
Yesterday was a better day, praying today will be even better!
 

Tesscorm

Moderator
Staff member
JSchneider - there are lots of kids here using supplemental EN as a boost to their nutritional intake. Supplemental EN (using an elemental formula) was my son's only treatment for two years. While it wasn't enough to eliminate all inflammation, it did keep things under control. When he started remicade, we gradually reduced the amount of EN but he now continues to drink one to two Boost shakes per day. No hard data to prove it but I do believe that keeping him at a good nutritional base has helped him stay healthy.

Perhaps you can add a nutritional formula she can tolerate and likes to drink to supplement her diet - both for nutrition and calories.
 
Tesscorm, we tried some of those protein drinks and they did not work w/ her unfortunately, she'd suffer worse. Thankfully she's pulled out of this flare before it went too far- so thankful for that!
 

Jmrogers4

Moderator
We're here getting Jack's infusion just a couple of weeks before his year on remicade anniversary. This last year had been incredible even with a MRSA infection the crohn's has not reared its ugly head. Jack continues to grow at the 100th% for height velocity. He had grown 5 1/2" and gained 30 pounds this last year. It took a few years to find the right medicine that worked for him. He had not missed a day of school for crohn's or sickness this year and for the first time in a long time crohn's is the last thing on his mind
 

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Tesscorm

Moderator
Staff member
Yes, amazing change!! So great to hear (and see) how well he's doing! Hoping and praying it stays that way forever!! :dance:
 

DustyKat

Super Moderator
This is just the most brilliant update Jm! :dusty::dusty::dusty:

The change is astounding and doesn’t he look fab! May the Remicade be his miracle drug until we have a cure!

Onwards and Upwards Jack. :mademyday:

Dusty. xxx

PS. I resized the pic. :)
 
Just wanted to share our latest update. Been waiting for awhile because we had scopes scheduled but for some reason they kept getting postponed...oh yeah...because they kept getting n the way of O's busy athletic life.

Finally had scopes today (first since dx 3 years ago) and no sign of inflammation anywhere. Yes, we still have to wait for the biopsies to come back but I fully expect those to be fine also.

O has been very well. She continues to run on the track team every day, never misses school because of Crohn's issues, is on the Headmaster's List, and is now down to swimming 3-4 days a week. Mostly to preserve her running times but also for weight and menstrual issues.

She has gained 39 pounds and 7 1/2". BMI is 16.7 which puts her in the 6th percentile so we will keep working on that but since she is doing so well the GI isn't really concerned and I was even worse than her as a kid and didn't have Crohn's so it looks like it is just in the genes.

We have extended Remicade out to every 7 weeks and she is down to 6mg/kg. Still taking the mtx for her psoriatic arthritis and the psoriasis which to look at her you wouldn't be able to tell. She is a flaking mess but will take that any day to have the GI success she is having.

We pray every day that all of the families here will soon blow up the site with the same kind of good news. Hugs to you all! Thanks for always being there!
 
5 foot 6 1/2 or 7 inches...she bounces up and down depending on who measures her and how straight she stand:ylol2: Weighs 104 or 105 pounds depending on if she eats breakfast before her appointment:rof:
 

CarolinAlaska

Holding It Together
5 foot 6 1/2 or 7 inches...she bounces up and down depending on who measures her and how straight she stand:ylol2: Weighs 104 or 105 pounds depending on if she eats breakfast before her appointment:rof:
It's great that she's broke that 100lb barrier, Jaedyn was back down to 94 last visit. She's 5'7 1/2".
 
Oh no Carol! I really do think J's issue is ongoing inflammation and hope this new doc can get her healed up nicely. But I have to admit once healed o's gain was slow going but when we cleaned up the diet she really took off. It could have been coincidence also but I really think her body was just finally being given the stuff it could use.
 
At last GI visit something amazing happened! Gus is now on the 10% line for both height and weight!!!! He's been at 5% or under for so many years, this feels like a gift!:dance::dance::dance::dance:
 

Jmrogers4

Moderator
This thread might need a bump for our newbies.

We're going on 2 and 1/2 years of remission and fairly normal life with just a few minor bumps along the way. Spent most of that time on remicade every 8 weeks just recently we have dropped to every 6 weeks.
He is looking forward to senior year of high school, was just elected Senior class vice president, just finished baseball season after not making the team last year. It took him a year of working out and catching up on development. He works a part time job, is doing well in school.
He is now 6', we were hoping to hit 5'6"-5'7" prior to Remicade. Still really thin but so is his brother so that just may be natural. He is busy planning his future with barely a thought towards Crohn's.
I hope if you have reached this stage you stay there for a long time and if you're still struggling you get there soon
 
What a great update! Sounds like he has a great senior year ahead of him. Is he going to Camp Oasis this summer? E is going again and is looking forward to it.
 

Jmrogers4

Moderator
Yes he is pdx, this will be his last year :( or at least he won't be able to go next year since as a volunteer as you need to be 18 and he will not turn 18 until after camp but is definitely looking forward to volunteering as a counselor during college. He is so excited!
 

smt

Banned
This thread might need a bump for our newbies.

We're going on 2 and 1/2 years of remission and fairly normal life with just a few minor bumps along the way. Spent most of that time on remicade every 8 weeks just recently we have dropped to every 6 weeks.
He is looking forward to senior year of high school, was just elected Senior class vice president, just finished baseball season after not making the team last year. It took him a year of working out and catching up on development. He works a part time job, is doing well in school.
He is now 6', we were hoping to hit 5'6"-5'7" prior to Remicade. Still really thin but so is his brother so that just may be natural. He is busy planning his future with barely a thought towards Crohn's.
I hope if you have reached this stage you stay there for a long time and if you're still struggling you get there soon

JM Rogers, very good news :)
 

DustyKat

Super Moderator
Update re: Sarah.

On the 10th of this month it will be 10 years since Sarah’s surgery and she continues to be remission. :dusty:

BUT the other big news is she is now living in Japan, and is married! :ywow:

It was a rather whirlwind romance but she insists that when ya know ya know. :lol: Anyway the fact of the matter is I now will have to curtail my bagging on you Yanks! Yes, she has married an American serviceman! They will be coming out to Oz for a visit in August so I will meet the son in law then, plenty of time to modify my behaviour. :eek2: :lol:

Dusty. :)
 
Nooooo, modified Dusty behavior?!?! No way! There is only one Dusty...you can't improve upon perfection! Haha

Congrats on gaining a son-in-law and the continued remission!
 

Tesscorm

Moderator
Staff member
Wow, that is quite the 'success' update! Congratulations to you and to her! (And, to he, he's not only gained a wonderful wife but a one-of-a-kind MIL! :rof:) That is just GREAT news, I bet you can't wait to get a look at him! :D

And, a modified Dusty??? NEVER! :lol:

Just so very happy for all of you!! :kiss:
 
Wow that is amazing news! Very excited for her as she begging on this new adventure! Long may her remission continue! I am retired Air Force, what service is he?
 

Trysha

Moderator
Staff member
That must have been a whirlwind surprise for you Dusty...amazing news.
You are a wonderful mother bringing your children through such an awful condition but allowing the freedom to grow up to independence.
Congratulations.....to you and the happy couple...may it be a lifelong success.
Trysha
 
That must have been a whirlwind surprise for you Dusty...amazing news.
You are a wonderful mother bringing your children through such an awful condition but allowing the freedom to grow up to independence.
Congratulations.....to you and the happy couple...may it be a lifelong success.
Trysha
Amen
 
:lol::rof::lol:
She married an American
:rof:
That's as bad as if Grace married a city slicker.

I'm glad she's feeling well and enjoy your visit when they come.:hug:
 

Jmrogers4

Moderator
Seems like it's been too long since anyone has posted in this thread so I thought I would give it a "bump"
Jack is one month shy from hitting his 3rd anniversary of starting remicade and continues to do better than we could have hoped. He is 3 months away from 7 years since diagnosis and I honestly thought we would not be at this point.
He is in his senior (final) year of high school and halfway through it at that. He is more concerned about world and local issues than his disease, mostly because he barely thinks about it at all anymore usually only the day of an infusion. He did write his college essay with a nod to crohn's but only in that it has given him the opportunity to discover his leadership skills through mentoring others with crohn's and acting as a leader at camp.
We are no longer worried about his growth he is just a hair over 6 foot tall, I think we were all hoping he would get to 5'9 since he was just a smidge over 5' at the start.
Jack is looking forward to going to college next year and hopes to someday be a pediatric GI.
We had discussed switching to humira for college since it would most likely be easier to do in college and not have to find someplace to do infusions (our insurance wants them done at Walgreens/Option Care infusion centers of which both colleges he is considering there is not one near) but I think we'll just figure out and continue on with the Remicade as long as we can.
 
Seems like it's been too long since anyone has posted in this thread so I thought I would give it a "bump"
Jack is one month shy from hitting his 3rd anniversary of starting remicade and continues to do better than we could have hoped. He is 3 months away from 7 years since diagnosis and I honestly thought we would not be at this point.
He is in his senior (final) year of high school and halfway through it at that. He is more concerned about world and local issues than his disease, mostly because he barely thinks about it at all anymore usually only the day of an infusion. He did write his college essay with a nod to crohn's but only in that it has given him the opportunity to discover his leadership skills through mentoring others with crohn's and acting as a leader at camp.
We are no longer worried about his growth he is just a hair over 6 foot tall, I think we were all hoping he would get to 5'9 since he was just a smidge over 5' at the start.
Jack is looking forward to going to college next year and hopes to someday be a pediatric GI.
We had discussed switching to humira for college since it would most likely be easier to do in college and not have to find someplace to do infusions (our insurance wants them done at Walgreens/Option Care infusion centers of which both colleges he is considering there is not one near) but I think we'll just figure out and continue on with the Remicade as long as we can.
Great news. Thanks for sharing.
 
That is so great that Jack wants to be a pediatric GI! Hope you can figure out a way to continue with Remicade in college--it seems to be working so well for him.
 

Maya142

Moderator
Staff member
That is wonderful - I think it's great that he wants to be a pediatric GI! I hope you're able to get the infusions sorted out - it makes sense to stick with Remicade since he's doing great on it.
 
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