# Success Stories



## DustyKat

Well it goes without saying that I stole this idea from the Your Story thread. :shifty:

I thought it might be an idea to start this thread as a place to visit when it all seems so overwhelming and you doubt you will ever see that light at the end of the tunnel...
When you find your way here for the very first time and are scared witless and uncertain of what the future holds for your child or when you hit that bump in the road and those feelings come flooding again or when you just what to sit and smile at just how amazing our kids are...their determination, drive, compassion and endurance. 

It doesn't just have to be about time..the length of a remission, it can be about a successful surgery, the Remicade infusions going smoothly, the Humira injections being a breeze, the EN doing the trick...
It's about letting other parent's know that things can and do return to normal, they are new normal but normal just the same. That treatments, procedures and surgeries can be successful and uneventful. That at the end of the darkest days there is indeed love, laughter, light and life. 

Dusty.


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## DustyKat

I guess most of you know my children’s stories by now so I will be brief with them. :yfaint:

*Sarah…*
Went undiagnosed for 18 months. During that time I watched her go through increasingly frequent episodes of upper abdominal pain, vomiting and headaches, until the symptoms eventually became constant. She didn’t have blood in her stool or diarrhoea and her blood and test results returned normal after normal result, IBD wasn’t on the radar so a colonoscopy was never performed. It all culminated in her being admitted to hospital for Pancreatitis, that turned out to be a red herring and within a few days of her discharge she was admitted again. This time blood results showed she was septic so they operated to do an appendectomy and see what was going on. What they found was a perforated and infarcted bowel and she ended up having 68cms of bowel removed. Suffice it to say she came within a whisker of losing her life.  She recovered from her surgery very well, particularly in view of how poor her physical condition was, but unfortunately was left with short bowel syndrome, she was 14 at the time. 

So it is now 5 years down the track and Sarah has been in remission since the surgery she had in July 2006. During that time she has completed high school and moved away to university. She has a part time job and studies full time, she is keenly interested in politics and that occupies most of her free time. She has taken responsibility for her own health and has found ways to manage her bowel issues, that being psyllium husks, and I have to think that her vegan diet may also be playing a part in keeping things in check. 

*Matt…*
Matt was diagnosed last December following only a week of very mild symptoms. Although his diagnosis was very quick, Sarah’s legacy, and his disease was only rated as mild to very mild he experienced setback after setback, two hospital admissions and a drain insitu for 3 months. It all culminated in him having a third admission in April for planned surgery. The surgery went well and his post op recovery was uneventful. He has been in remission since surgery and his health has continued to go from strength to strength.  He pulled back on his studies this year but he was able to finish high school on time and will continue his university studies full time next year. He is back to playing soccer and generally living life to the full.  

Five years ago you could have fitted what I knew about Crohn’s on the back of a postage stamp. My how that has changed but with knowledge comes power, confidence, the ability to take control, to ask and to question. It doesn’t stop the fear, the nagging worry nor the uncertainty but it does put you in a far better place to advocate for your child. 

Dusty. :heart:


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## G's mom

Your family always amazes me.


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## Tesscorm

*Moving on from EN to remicade*

Reading about so many new members’ children being diagnosed lately prompted me to read through our children's Success Stories.  But, it seems that after Dusty's initial post, this thread has been forgotten!   As Dusty expressed in her opening post, it is so scary to find yourself here!  When Stephen was diagnosed, it would have been so comforting to read of success stories of other kids.  At diagnosis, the fears of the unknown were overwhelming; I imagined the worst!  In an instant, my most basic assumption, that my kids would be healthy, disappeared.  I’m not sure I can express my feelings as well as Dusty always does, but I felt disconnected, in a fog and, all the while, being informed of tests and results, medications and risks and expected to make decisions that will affect our child's life! :ywow: But, it does get better and an altered but normal family life does return.  There’s a bit more uncertainty, a bit more worry but Stephen is back to playing hockey and tormenting me with hockey hits, to staying out too late, to watching movies together, to arguing about chores, to planning family vacations! :ysmile:

Stephen was diagnosed when he was 16 years old.  It already seemed a bit unreal that my son was being admitted to the hospital because, whatever he had, our regular Ped couldn't find the cause.  However, to a degree, I was relieved - now they would find the problem and correct it (permanently).  Never did we expect to be told that they found the problem but couldn't fix it.  

Stephen’s most obvious symptoms had been recurring fever accompanied by diarrhea, back and forth for two months.  Lots of tests had been run - blood, barium x-ray, stool samples, ultrasound and, while there were indications that something was wrong, there was nothing definitive.  Meanwhile, he was lethargic, little appetite and lost almost 20 pounds.  On May 16/11, we took him to Toronto’s children’s hospital and he was tentatively diagnosed within a few hours.  After a colonoscopy, doctors confirmed Crohn’s (in his TI and in some areas of his small intestine, duodenum and colon).  He was given two options – enteral nutrition or steroids.  His IBD clinic is a strong supporter of EN and very strongly encouraged Stephen to attempt the EN.   

He was in the hospital for a week on IV-Flagyl, during the last two days he began EN and was taught to insert/remove the NG tube.  He did six weeks of EN with no food (clear fluids only).  He learned the insertion/removal of the tube fairly easily.  Prior to his diagnosis, he was the typical teenage boy – sleeping late, starting homework Sunday night!, forgetting his lunches and chores but always with a smile and a whistle:whistleinnocently: – as long as we got him to hockey, life was good!  Somewhere he found the maturity and determination to go six weeks with no food and barely a complaint!   He talked to all his friends about his Crohns and often inserted the NG tube with an ‘audience’.  There are so many posts of parents sharing their surprise and pride at the strength and resilience of our children – we sometimes don’t realize how awesome they are!:medal1:

His symptoms disappeared almost immediately and back at school the following week.  At the time, he was in two Phys. Ed. Classes (2+ hours per day) and on two hockey teams.  He started PE at a lower pace for a couple of weeks, added back one team and then the other within the six weeks.  Gained 10+ pounds over this time and then reintroduced all foods over the next three weeks.  Once he was again eating all foods, he gained almost another 20 pounds and grew ½ inch. 

His maintenance has continued to be EN at half the dose, 5 nights per week.  Other than eliminating seeds, nuts, popcorn and veggie/fruit skins, he is eating all other foods (I know he’s even had the odd beer, unbelievably with his GI’s approval! …ugghh, another story! :lol:  Then again, his GI’s an Aussie!  Sorry Dusty!:ytongue.  

So, for the most part, other than his nightly NG feed, Stephen is back to his old life – forgetting lunches and chores, his most important issues being the next hockey game or Call of Duty war :tank:!  We’ve had some bumps, some minor symptoms but all quickly resolved (although my worry-metre went off the scale each time!).  His diagnosis has not slowed him down one bit - since his diagnosis, he’s had his best year of hockey (also his worst with a mild shoulder separation, injured knee and a suspension!), he got his drivers’ licenses (what’s one more worry for mom?! ), continued to teach himself guitar and entered a talent competition, applied to universities and will be graduating in June.

Crohn’s is still always on my mind and I’m always learning of something new to worry about in the future (it’s like I need to stockpile my worries in case I actually have a worry-free day!:duh but  I’ve accepted that this will never go away.  I’ve always fixed what’s wrong in my children’s lives; it’s not easy accepting that I can’t fix this…  and I’m not finished trying yet!

I don’t know if he’s in ‘remission’ as he still has lingering inflammation and I don’t know how long EN will continue to be his only treatment.   But, things have not spiraled out of control as I’d feared and compared to how Stephen looked and felt and my emotions at diagnosis, this is a success story! :dog:

I also couldn't have made it through those dark, scary days at the beginning without everyone here!  You have very often become the people I first turn to when I'm, once again, worried and scared! :ghug:  Thanks :rosette1:


Update 2/28/13 - A short update...  all of the above still applies, Stephen is doing well with only sporadic signs of Crohns, however, following his transfer to an adult GI when he turned 18, his new GI feels that remicade is needed.  Stephen's crohns did not worsen over the year and a half, however, once EN induced (clinical) remission, it seems that while EN kept his crohns 'under control' it did not eliminate all inflammation.  MREs showed that 20-30 cm of inflammation continued to be present in his TI.  He had his first remicade infustion on Feb. 27/13 - hopefully, treatment with remicade will eliminate all the inflammation!! 

Update 1/24/14 - S continues to do well! :dusty:  He continues with remicade (was moved to every six weeks - no symptoms but testing showed no remicade left at 8 week intervals) and has had no problems with the remicade and no symptoms.  He's gone away to school , so I only see him every few weeks , but he looks good!  He loves school, likes his roommates, is learning to cook and clean and do laundry!! :lol:  And he's still playing hockey!  He had a couple of mishaps, first separated one shoulder and then a dislocated the other but, neither affected his crohns and neither did the remicade affect his recovery.  He stopped supplementing nightly through the NG tube but now continues with 1 to 2 Boost shakes per day.  So far, so good! 

Update 3/26/15 - All continues well and results from most recent scope show 'no active disease' and 'complete mucosal healing'.  While S has been one of the lucky ones who has not suffered greatly from symptoms, it has taken almost four years to completely eliminate the inflammation!  It seems remicade has done its job!  He's now been on remicade for two years (how quickly time flies! :ack and, knock on wood, so far he's not shown any side effects nor any lessening of its efficacy.  Since being on remicade, he had a roommate who had to leave school due to mono  (S did not get sick), had a bout of strep last year, the flu this year and possibly molloscum but, so far, it doesn't seem that remicade has led to a greater number of illnesses nor affected his ability to recover. :thumright:  Aside from crohns, he's almost done his second year of school, still plays hockey, is planning a vacation with roommates and has a summer job lined up!  Hoping, praying I'll be back next year with a similar update! 

Update 6/18/18 - It's been quite a while since I updated S's story.  And, as he's certainly no longer a kid, I thought I would update with a closing update to his 'kid's' story.  He had his graduation ceremony from university last week (very proud mama here! ::rosette2 (he actually finished school in December though).  He's working, still playing hockey and computer war games :facepalm: and doing all the things he should be doing (and, maybe some he shouldn't!  :lol  Crohns-wise, he continues in remission.  He has been one of the lucky ones who has responded to treatment and has had no long lasting or serious issues since dx (knock on wood, throwing salt over my shoulder, and whatever else I need to not jinx this!!).   While it's been 8 years eek since his dx, and my daily worries re crohns are next to nothing, periodically, I do still worry about when the next shoe will drop.  I'm grateful it didn't happen through university or when he was starting work but, the reality is that it will never be a good time to happen. :frown:  But, for new parents, know that things will settle and, as I said in my first post, the news and your fears will bring the worst to mind but, it doesn't have to happen that way.  It may take time to find the right treatment but things will settle and your fears will lessen.  S has been lucky (and I never forget this!) and he was able to continue on since dx with only a few adjustments to his lifestyle.  He has scopes scheduled for November but I'm expecting/hoping that all will be good.  Again, for new parents, know that you've found a great place to meet and share your worries.  The other parents here will give you strength and knowledge to deal with your emotions and be the best advocate you can be for your child!  :ghug:

Update Nov. 13/18:  S had scopes last week and all good.  No inflammation seen!  This scope was booked almost a year ago as a follow-up but I was relieved that he had it scheduled now!  I'm always soooo worried when infusions are delayed and the last two infusions have had to be delayed by over a week due to the jaw surgery/infections that he's had! So it was timely that the scopes were done now!  Made me even more relieved to hear that all was good.


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## S mom

When my son was diagnosed in September of last year, he had been having a full raging flare for months.  He was under 100 pounds (44 kilos) at just under 6 feet tall, he was anemic and was running to the washroom at least 10 to 15 times a night and then during the day as well.  It had been going on for so long, we all forgot what "normal" was like.
I will never forget what the doctor said to him... she said that he "would get his life back".  She said that he must feel like he had no life right now, but that he shouldn't worry, he would have a life again soon.  What a great thing to say... it gave all of us hope. :heart: 
The GI doctor also said that when he was so weak it was not possible to have "courage".  He told him that as he got stronger, he would get his courage back and when that happened, he would be able to see that everything would be ok.  Wow, another great message! :ysmile:
Anyway, he did 12 weeks of exclusive enteral nutrition, a course of Flagy and Cipro, steroid enemas for a couple of weeks and a topical steroid for sores on his tongue and he started weekly subcutaneous injections of methotrexate and by mid December 2011, he was essentially in remission.  
He's continuing to do fantastic now.  He's gained over 35 pounds, eats everything, has lots of energy and is back to life.  He continues to give himself the methotrexate shot weekly but other than that, things are really great right now.  
Hopefully this success story will give others out there hope too!!


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## Shansmom

*Remicade Remission*

:cheers: Shan has had two Remicade infusions.  Her doctors today, while not likeing to use the word "remission", basically said as much!  We get to start cutting back on Asacol.  She is growing, gaining weight, and looks amazing!  So happy.  So relieved that Remicade was the right choice and the solution.:ybiggrin:


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## ChampsMom

:dance:   Yeah! Yeah! Yeah!  :emot-dance: That's awesome news!!


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## ChampsMom

As I post this I have to admit, as excited as I am about Alex' news my heartbreaks when I read stories that other kids are not doing as well... I hesitated in posting, but then I realized when I read other's successes it gives me hope that Alex will pull through...

So to the Mums and Dads out there who's children are not doing as well - my prayers are with you (I cry to think of the hard times we've seen...) and I *pray* you're day in the sun is just around the corner!!

Here's Alex good news today:  He's gained almost 6 more lbs., and grew another inch... Poor kid is still not hitting the 50% marker - but WHO CARES, he's porportionate  !?!  He's doing well enough that for the first time in 2 years instead of heading back to the GI every 3 months, she said... (drum roll....) see you in 6 months!! SIX months!  I almost wet myself - I did tear up!

:emot-dance:  The dance to dance when they find a cure to this awful disease... today I dance for all our kids and my love for Alex... my Champ.


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## Shansmom

Hey Champs Mom -- Shan, though she is gaining weight and growing and in "remission" also is not hitting the 50 percent mark yet in height and is almost to the 25% in weight.  Still -- it is a huge improvement and all improvements are good.   Hang in there.


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## DustyKat

Bump


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## crohnsinct

This thread hides and it is so good to hear the successes...keeps us all keeping on so I thought I would bore everyone with O's success again just to bump this up there. 

O was diagnosed 2/1/12.  She was in the hospital for 6 days with pretty sudden onset.  TPN, blood transfusions, malnourished etc.  She was put on Prednisone and Remicade before she even left.  

Stayed on prednisone with Remicade and over the next 3-4 months every time we tried to taper the prednisone she got worse.  The doc finally told us we had to add something to support the Remicade and suggested Methotrexate. We asked about Enteral Nutrition and the doc agreed to try it for 6 weeks.  

Tonight we got the word that after 5 weeks of EN, her numbers are finally improving.  It has been 4 months and we finally have encouraging news.  It has taken a few tries but finally I feel like I can truly rest knowing my daughter is going to be better.  

I pray every day for the parents and kids of this forum and beyond.  

Good luck to everyone reading this and keep fighting to find what works for you and your children!


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## Tesscorm

There are a few new parents here...  thought it might be time to 'bump' this one up


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## Zoodles

We have been almost one year without a flare.  This is always a dicey time of year and not sure if it is back to school or another issue.

Two years of Humira and Brendan is now over 5' tall and over 100 pounds and still growing.  The days of paying him $5 to drink his protein shake are a thing of the past.

Three years plus after diagnosis, we are getting the hang of the new normal.  The first six months is brutal but it does get better.


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## Mehita

I don't know about you, but once my kids were potty trained and started managing BM's themselves, I really didn't check on them too much. Big mistake on my part! Had I been checking I would have realized that DS had been having diarrhea for almost 3 years. He thought diarrhea was normal! I had to take him out to the yard and show him a pile of dog poo and tell him THIS is what normal little boy poo should look like. He said he'd couldn't remember ever having poo like that... and that locked me in for the "Worst Mommy Ever" award.

At age 8, after an uncontrollable BM in public and falling off the growth charts, he had an endoscopy and colonoscopy and was dx with Celiac and Crohn's diseases. Based on research, I was expecting the Celiac, but the Crohn's blew me out of the water. We were told the Crohn's was mild and didn't need to be treated right away, but we did have to start a gluten free diet immediately. Within three days we had a brand new little boy and couldn't have been happier. Being gluten free kept the Crohn's in check for a good two years. Then the vomiting started. Every day, sometimes for 12 hours a day... all due to a stricture. He was finally put on medications for Crohn's.

*Side note:* Our old gastro didn't want to treat the Crohn's because it was so mild and our new gastro believes the lack of treatment contributed to the stricture forming. Grrrr!

While DS is still not 100%, he's pretty darn close. In the last year he's gained 11 pounds and an inch and a half. He's back on the growth charts (5% for height, 12% for weight) and I can physically see muscles building on his arms and legs. He used to be skin and bones. He laughs more, he's more confident, he earned his black belt in karate, he loves school and gets straight A's. While the flares haven't been fun, he knows they are fairly short lived and do not scare him anymore. That in itself is a success!

And, using the Bristol Stool Chart as a reference, everyone is required to report to Mom any major changes in their poo!!


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## izzi'smom

Izzi has been doing super since May on Tacrolimus. She was refractory for 18 months prior and fairly resistant to treatment. 
Izz was diagnosed 1/2011 with Crohn's colitis after  having bloody diarrhea. She was receptive to steroids but became dependant. We tried many different meds/alternative therapies, none of which worked. She lost a ton of weight at one point, when we used enteral nutrition to supplement her nutrition. She was put on Tacrolimus to prepare her for a subtotal colectomy/permanent ileostomy, which we were able to cancel after seeing how well she responded. Her scope still shows chronic mild inflammation, so she isn''t technically in remission, but her CRP is normal-I'll take it!!
Just wanted to share some love...I am cautiously optimistic at this point-we all know that we wish for them to get better and then we hope against hope that they won't flare-but it is possible to hear about healthy -ish (lol) IBD kids!


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## Tink572

I've been a lurker here for a while and thought this thread is a good one to jump in on!

My son just turned 14 two days ago!  He was diagnosed with Crohn's just after his 9th birthday.  He's had a mostly uneventful Crohn's history--really not a lot of pain or diarrhea.  His main issue had been his lack of growth and absolutely no appetite, until about a year ago.  We had him re-scoped at that time and found severe disease in his terminal ileum.  He was started on Remicade and has been getting that every 8 weeks since about October 2011.

About a month ago he was admitted through the emergency room with severe narrowing in his terminal ileum--the same spot that was seen on his prior scope.  He ended up having surgery to remove about 11 cm of the terminal ileum and has been doing amazing since then!!  He is eating so much now!  The biggest change I've noticed??  He is actually going outside and playing so much!  He is riding his bike, going to see friends, and having so much fun!  I don't think any of us realized how bad he was feeling before having the surgery, but now we are amazed by his energy level and how much he is doing now!  I feel like we have our little boy back!!


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## Tesscorm

So great to hear that these kids are doing well!!!  :banana:


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## NMMom

This thread means so much to me.  I keep going back over the posts to help keep me positive for the future.  Thanks all!


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## Robs a

My 14 year old son has just been diagnosed with Crohn's and I am struggling to come to terms with so many unknowns.  To be a mom and not able to "fix" it or sort it out is devastating.  This link gives me hope !


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## izzi'smom

Just popping in to refer to threads for a sec, but wanted to post that Izz has been on Tacro for 6 months this month, and is still doing fantastic. Her labs have been up and down a bit, but last weeks labs show great stabilization and normal CRP. Thinking of all of you and wishing you could all post in this thread! <3 I will pop in again to catch up at some point this month.


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## DustyKat

Oh man Angie that is so fab to hear! Long may it continue!  

:mademyday:

Dusty. xxx


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## my little penguin

Wonderful news!!!!


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## Sascot

That's great news!  So nice to hear Izzi is doing well after suffering so much


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## upsetmom

So glad she's doing well....:dance:


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## Farmwife

Great th hear!


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## Tesscorm

Great news!!! :banana:  :banana:  She (and you) so deserve these good times!!!  I hope they continue forever and ever!!!!


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## Clash

I forget about this thread it seems to hide from me. But just wanted to thank everyone for posting here. I can imagine this is a bright spot for some who are going through dark days. 

C is doing good, I guess we're still technically in wait and see mode. But yesterday in a flurry of conversation about his weekend plans he throws in at the end and Oh yeah Mom I don't have Crohns anymore...I just laughed because this is something he says when he wants to eat something that won't agree with him or go to his girlfriends house with fever and fatigue but he says no really 3 perfectly average, everyday, normal teenage boy poops so alls good no Crohns. Then he bounced out of the room to get ready to meet some friends for the evening.

We aren't there yet and he knows CD doesn't go away but he's feeling good, hanging out with friends and joking about something he at one time wouldn't willingly bring up in a convo so we may still be in wait and see mode but things are so much brighter now than the dark times of dx. I know that black dog may rear its ugly head again but we are enjoying some perfectly average, everyday normal teenage boy life so for now all is good!


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## DustyKat

This is a joy to read Clash!  

What an amazing lad you have and there is nothing that brings a bigger face splitting grin to my face than to hear that someones child is bouncing around and doing normal stuff. I love it! :ybiggrin: 

Dusty. xxx


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## crohnsinct

I think we all need a little pick me up so bumping this thread!


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## Mumof4

My son Matt is 13. He was diagnosed at 11 and was very very ill at that time, he was in hospital for a long time unable to walk and came out in a wheelchair, before they worked out what was wrong.  when he was eventually diagnosed I was lucky enough to find this forum and gained a lot of support from the good people on here. I haunted the forum day and night In floods of tears, grieving for the life which I felt Matt should have had and terrified for the future.  I read what other kids were going through which in many cases was even worse than Matt, with kids who were much younger.  I was in the depths of despair thinking that Matt was only going to get worse and those awfully sad tales were what lay ahead for him.  Once diagnosed Matt was put on a meal replacement called Modulen and then after four months he was put on azathioprine (and yes I agonised over that as we all have) and omeprazole.  He was still unwell and very up and down suffering what appeared to be flares but which the tests did not verify.  So what is the good news?  Since around November Matt has been getting better and better.  The turning point came when he started to worry about his height.  He had read that having crohns can affect growth and his friends were getting their growth spurts and he was terrified of being left behind.  He decided that he would supplement his food with two drinks of Modulen a day in the hope that the extra nutrients his body would get would help him grow.  This was a big decision for a boy who hated the stuff and had twice lived on it for months instead of food.  Well, The outcome has been dramatic.  He has grown around 4 centimetres and has gained around 5kilos.  But the really good news is he feels like he no longer has crohns (his words).  No pain, no joint pain, no problems with his bowels at all just regular bowel movements.  His energy is through the roof.  He is now back at gymnastics, he is doing archery and parkour (similar to free running), he is a volunteer for St John Ambulance and his life is good.  He was even picked to be part of a team demonstrating parkour at his open night at school.  He has signed up to do his bronze Duke of Edinburgh award.

I am sharing this as I never thought I would see this day.  He is clearly in remission (for how long I don't know).  Whether it is the meds finally kicking in or the Modulen supplements which have caused it I cant be certain, but I am convinced the Modulen has played a part.

So to all you parents out there whose child has been recently diagnosed and you are grieving for what they have lost I would like to say there is hope.  Matts life is good, long may that last and I hope all your kids get there too xxx


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## emillerstudio

It's good to read that a normal life is possible, I feel so bad for my 17 year old son that he has not had a real high school experience and had to quit playing soccer. One day at a time and I try not to predict the future too much.


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## Jenn

Hesitant to post good news (knock on wood), but we are having great success with Alex on Humira and 6mp. It's been one year now on Humira and 6 months with 6mp and it was the boost he needed to get his protein levels back up. His energy and appetite are great, he's gained a bunch of weight and is growing again. whew, for the moment.


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## Tesscorm

Great news!!!! :banana:


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## Jmrogers4

Fantastic News, long may it continue (I always feel like Star Trek when I say that but it is truly what I mean)


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## upsetmom

That's so good to hear...:ybiggrin:


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## my little penguin

Woohoo party !!!
Long may it continue


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## Twiggy930

Such fantastic news!!!!


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## DustyKat

Wow! That is so fab Jenn! 

I so hope all continues to go well for your boy, bless him. :heart: 

Dusty. xxx


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## Twiggy930

It has been a little over a year since my son's diagnosis and although it took a while (like the better part of a whole year) to get him feeling mostly better he is finally there.  This time last year he was ramping up his azathioprine dose, weaning pred, starting EN and just beginning a battle with Crohn's related arthritis, which left him unable to walk without crutches for 3 months.  It was not a happy time.  One thing he really wanted to do last spring was play lacrosse, something he had never done.  At the time I remember thinking that he was so frail he would never be able to do it.  Well, fast forward a year and the lacrosse season has just started and he is playing!  The first practice was this past week and I had the biggest smile on my face when he went out the door decked out with all the gear.  This week was a good week!  :ybiggrin::ybiggrin::ybiggrin::ybiggrin:


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## DustyKat

That is fabulous Twiggy! What an absolute joy to read and such a deserved reward for you both after all you have had to endure. 

Onwards and upwards to your lad and I hope he had a thoroughly good time!  

:mademyday: 

Dusty. xxx


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## Niks

That is amazing news!!!  :dance::dance::dance::dance:


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## Tesscorm

Great to read Twiggy!!   So happy for him! :banana:


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## DustyKat

Well it is two years today since Matt had his resection. 

	
	
		
		
	


	





Whilst I remain forever vigilant and eagle eyed, :lol:, all seems to be going well, touch wood! :ybiggrin: 

I can't thank you all enough for the support, love, advice and laughs! You're the best! :heart: 

Onwards and Upwards!

Dusty. xxx


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## CarolinAlaska

Congratulations!


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## Tesscorm

Great news that he's done so well, Dusty!!!!  :banana: :banana:


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## araceli

That's great. I am so happy to hear that.


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## Jmrogers4

I posted in Jack's thread but it was suggested I post here as well.
We had a GI appt./check up on and GI was so impressed he kept saying WOW!
We are in our 10th month on LDN and blood work from February is normal; upper and lower scopes from February are normal - no signs of active disease.  

Added supplemental EN at that point as Jack was still not growing or gaining weight, he was in 1st percentile for BMI.  8 weeks later he is at 50% percentile for weight, he is still 15th percentile for height but I fully believe that will change over the next year or so (He was always 75th before crohns).  He has grown an inch in that 8 weeks and gained 23 pounds!

At this point all labs are normal (touch wood), he feels great, has color in his face, no joint pains, no eczema, normal bowel movements (1-2 a day), no stomach pain, maintaining weight, doesn't wake up as tired as he went to bed.  Dare I say we may even be seeing early signs of puberty (He has his first 2 zits on his face, we had a talk about making sure we are washing his face everyday, especially after baseball when he is sweating a lot).

We go back to GI in 3 months for labs to check progress and make sure he is still moving in the right direction.  3 years form diagnosis, he is feeling and acting 100%

Thank you all for your advice and support for the past year I'm so glad I found this forum and it has certainly helped me ask the right questions and I think through that get Jack to this point


----------



## Farmwife

What a blessing all the way around.
You've also have been a great help to this forum.

HUGS


----------



## ChampsMom

Hip-hip-hooray!!  :banana:  GREAT news!!

Thanks for sharing!!


----------



## crohnsinct

Ha!  Read this on his thread but like a great book it was just as exciting to read it again!!!!!


----------



## Niks

Fabulous news Jacqui !!  

xx


----------



## AZMOM

Jacqui! Love your post and so glad to see someone on a successful path!

J.


----------



## my little penguin

WOOHOOO!!!
Love IT!!!


----------



## Dexky

Awesome post Jacqui!  And your new profile pic…I wonder if Jack could teach my kids how to use a cell phone?  All they do is stare at them and punch them with their thumbs!!  If they ring, it startles them so much they may drop it!


----------



## Jmrogers4

Yeah, that is only because he is talking to me and I told him to call me not text me after school.


----------



## Tesscorm

Okay, off subject but just an idea for parents with tweens/teens...  I told my kids NO TEXTING (at their current age, 18 & 19, it's now allowed! :lol but, when they were younger, I wanted to hear their voices...  _anyone _could be responding if it was text only and, once parties, etc. started, I also wanted to hear that they were coherent :lol:


----------



## Jmrogers4

Yes that is why I tell him he must call me not text, he can text his friends but I have to hear voices.  I'm glad I'm not the only one Tess.  He can only text me like if I'm picking up dinner what is his order, very simple questions but must have phone calls when a change of location for him happens.  If he has told me he is going to one place and either goes somewhere else or changes plan he has to do it with a phone call not a text.  And he better ANSWER the phone if I'm calling


----------



## Mehita

Heck, I'd be happy if I woke up one morning and DIDN'T see DS's phone still sitting on the kitchen counter. I get more texts and calls from his friends than I do him.


----------



## Dexky

Jmrogers4 said:


> And he better ANSWER the phone if I'm calling


I hear ya!!  It's not like they haven't got it nearby!


----------



## Catherine

They can only answer it they take it with and turned it on

Still angry over mobile phone issues with number 3 child on Thursday.


----------



## incik

Hi!

We just found this forum and here is my daughter's story.
She was 2 years when Crohn was diagnosed, pain and bleeding every day. We had one bad flare up, 7weeks in hospital with feeding through neck.

She was taking prednisolon and after that Imuran. We started to use SCD diet when she was 3 years old, soon we could skip Imuran. It took 1year, then symptoms were gone and we continued with SCD diet one more year. When she was 5 years old, we slowly introtuced foods, which were prohibited during diet.
Now, when she is 7 years, we avoid wheat, lactose and white sugar.

That is our story. (sorry for my english, it isn't my mother language)


----------



## CarolinAlaska

incik said:


> Hi!
> 
> We just found this forum and here is my daughter's story.
> She was 2 years when Crohn was diagnosed, pain and bleeding every day. We had one bad flare up, 7weeks in hospital with feeding through neck.
> 
> She was taking prednisolon and after that Imuran. We started to use SCD diet when she was 3 years old, soon we could skip Imuran. It took 1year, then symptoms were gone and we continued with SCD diet one more year. When she was 5 years old, we slowly introtuced foods, which were prohibited during diet.
> Now, when she is 7 years, we avoid wheat, lactose and white sugar.
> 
> That is our story. (sorry for my english, it isn't my mother language)


I'm glad to hear of your daughter's good story.  I assume she is doing well now with her foods too?  May she long stay in remission!


----------



## DustyKat

Hey incik, 

It is so wonderful to read that your daughter is doing so well on diet.  I hope all continues this way and your daughter has many, many years of good health! 

:goodluck: 

Dusty. xxx


----------



## ChampsMom

Hi incik,

Welcome to the forum and thank you for sharing your daughter's story!  What a great blessing that she is doing so well!!

Love hearing good news!


----------



## DustyKat

Well today is the day, 10th July, 7 years ago that Sarah had her emergency surgery and also received her diagnosis. 
Surgery put her into remission and she has remained that way since.  She tells me she is still taking her Imuran, she is on various supplements, as my signature states, as I don't know exactly what she takes! :lol: 

She feels well and looks well, is living life to full at university and beyond, is very happy with the relationship she is in and well hey...it can't get better than that! Except for a cure! 

Sometimes the last 7 years seem a lifetime ago but again they often feel as if it was only yesterday I was sitting outside the operating theatre. 

Onward and Upwards! 

Happy Dusty. :dusty:


----------



## my little penguin

Woo hoo for seven years 
Long may it continue !!!!!


----------



## ChampsMom

Praise the Lord!  Hoot!  Hoot!!


----------



## ChampsMom

Okay - here's 2 totally different success stories... 

First:  Today Alex (IBDer) threw a 102 mph pitch (baseball)!  I almost fell over.  

Second:  My youngest son (age 4) who is on the Autism Spectrum PDD-NOS conquered potty training!!  I had really worried about this, as he's number 3 boy and the other two were trained MUCH earlier...  But as he has done with everything else to date - all in his own time.  Once he decided it was a 4 day change over and we now he is 2 weeks dry and said we can get rid of the pull-ups he doesn't need them any more 

Gotta go now because I can hear him beating up the 13 and 16 year olds...:rof:


----------



## Jmrogers4

Wow! Fabulous Dusty.  Long may it continue


----------



## Dexky

ChampsMom said:


> First:  Today Alex (IBDer) threw a 102 mph pitch (baseball)!  I almost fell over.


He's 16??  Tell him to save his arm!!!  Do not continue to throw that hard through high school!!  How is his accuracy?  You do realize how special that is, don't you??


----------



## ChampsMom

Dexky said:


> He's 16??  Tell him to save his arm!!!  Do not continue to throw that hard through high school!!  How is his accuracy?  You do realize how special that is, don't you??


He turned 16 in December, yes.  He has always been very athletic and has phenomenal (not a Mom blowing smoke, I mean eerie phenomenal) eye-hand coordination (could throw a ball in the air and knock it across the yard at 18 months)... He played baseball until 5 years ago (pitcher/catcher most of the time), but quit to play ice hockey (much to my HUGE disappointment, I played softball through college)... But then he was really good in hockey - this past year he led his team in points (tied for goals with another player but led in assists - which interestingly enough was his goal - he wanted to get every kid on the team a goal this year and got everyone but one.) 

He's *just* got back into baseball this year playing shortstop, pitcher most of the time and is batting 400-500 (*love* watching him get up to bat - he's a lean kid so his first up they tend to move in, and *slam*!!!  the rest of the game the outfield is sitting on the  fence - :rof:...)

I know the High School is working hard to get approval for him to play (he's on Home & Hospital Instruction so receives his education through the county at home and they want him on the field - so we are working on getting the doctor to write up why he should not be in school all day, but can show up and play games - it isn't too much of a stretch - missing 2 days of school when you don't feel well has huge consequences, missing a game or practice, not so much).  

I think he needs a pitching coach - I played 3rd base, so I'm not much help there - so I'll talk to him about it.  He needs to work on his accuracy as he manages to hit at least one kid every other game, but otherwise he's the number 2 pitcher on his Club team right now.


----------



## Tesscorm

I know little about baseball, but it all sounds GREAT!  Good for him, I hope they can manage to get him on the team!  Being a player yourself, you must be very happy!


----------



## Tesscorm

Dusty - kept meaning to come back to this thread!!  Amazing how well Sarah has done!  Not only crohns-wise directly; she really is an inspiration for all parents who fear future limitations!  Sarah certainly overcame challenges and has only forged ahead!!  Way to go Sarah!!! (If I were you, I'd put away that rocking chair! )


----------



## Jmrogers4

ChampsMom said:


> Okay -
> 
> First:  Today Alex (IBDer) threw a 102 mph pitch (baseball)!  I almost fell over.


Jack says DAAAANG!!!!, was it a fast ball? He loves baseball, hates to pitch though, he likes to play catcher.


----------



## Clash

Awesome success for Sarah with CD and life in general!

Way to go Alex! I know you are a proud Mama!


----------



## Dexky

ChampsMom said:


> he manages to hit at least one kid every other game


I wouldn't want to be that kid!!


----------



## DustyKat

Ugh! That was like reading another language! :lol: 

Well done and bravo to your lad Shell! :award2: 

Foreign language and all even I could could tell it was brilliant! :ybiggrin: 

Dusty. :thumleft:


----------



## QueenGothel

Rowan is officially over the 1 year hump from takedown.  The short story of it all is she was diagnosed UC, never responded to any medications including Remi. Her bleeding was so bad she needed frequent blood transfusions.  She had her proctocolectomy, j-pouch, Mucosectomy, ileostomy surgery April 2012, takedown 2 months later.  A few more very scary bumps along the way which put her back in the operating room twice for lysis of adhesions and an omemtumectomy. Fast forward now 7 months she is doing very well. They told me to worry about dehydration and frequent bathroom trips and she only uses the bathroom on average 3 times a day has no incontience issues and is living her life to the fullest now as a five year old should.  It has been a rough road and I am certain we are going to have more bumps in the road but for now I live in the moment and that moment is full of hope for the first time since our journey began back in Oct 2011 when I met all of you.  

<3


----------



## ChampsMom

Yeah Mary!!  What a blessing... I pray for long, long, LONG roads with NO bumps!!


----------



## Tesscorm

Mary, what a great post!!!  I am so happy to hear all is going well! :banana:  You two certainly deserve a smooth sailing from now on!!!  NO more bumps!

:sun:


----------



## DustyKat

Wow Mary! Where does the time go! :ghug: 

It is so brilliant to read that Rowan is doing wonderfully well. Lord knows she deserves it, as you all do.  My wish for you is that the road ahead is the smoothest and straightest without even the teeniest bump in sight! Good luck! :heart:

:mademyday: 

Dusty. xxx


----------



## Dexky

May she have all her -omies behind her Mary.  She has been through enough!!!


----------



## Mehita

Yeah for Rowan! Is she off to Kindergarten in the fall?


----------



## Jmrogers4

That is great Mary, hope there are no more bumps for Rowan.


----------



## crohnsinct

I shy away from posting our success because so many are struggling but I guess I feel I should to give encouragement. 

Had our every 3 month appointment with the GI yesterday.  O has now grown 4 1/2 inches and gained 22 pounds since diagnosis.  She is doing great.  She just moved out of the anorexic category with a 15.7 BMI!  We are still working on weight. 

Doc has approved her training for a half marathon (to benefit the IBD clinic) in October.  But we are to weigh weekly and if she drops pull training.  

Since we added the Mtx in April he is now ready to entertain moving out her infusion schedule out.  We will do our next at 5 weeks and after that see if we can make it to 6.  

We go back mid November so pushed out to 4 months!  Probably because he knows he can count on me to call if anything transpires:ylol2:

Her swimming and running are going fab and she got straight A's all school year. 

I was so happy about the moving of Remicade I forgot to ask about dropping Prevacid:duh: Oh well, simple email to the nurse...wouldn't want her to miss me:ylol2:

Oh and P.S. Scopes will be done in 2014.  He said he really thinks all is well but he has to do the responsible thing and go in and look.  He will work with us so she misses minimal school and it doesn't interfere with her sports and championships etc.


----------



## Tesscorm

That's great news!!  Wow, 22 pounds is huge!  Especially given her swimming and track activities!

Way to go O!!  (And mama too... for keeping her on track! )


----------



## Jmrogers4

Wow! That is fabulous!  Way to go O!  Now go have a glass of wine, CIC and celebrate a little.


----------



## upsetmom

Great news!!!!

I'm glad everything's going well.:dusty:


----------



## ChampsMom

Woo hoo CIC!!  That's awesome news all around!!  

Thanks for sharing!!


----------



## my little penguin

:dance::dance::dance::dance::dance:

Wonderful News!!!


----------



## Tink572

My son is now almost 1 year out from surgery (August of 2012).  He had checkups with the GI and the endocrinologist in the last week.  Since surgery he has grown 5 inches and gained 30 pounds!!  He's at 5% for height and 26% for weight on the growth chart.  He will start high school next month just over 5 feet tall!  This time last year he was certain he would be the only 9th grader under 5 feet tall!  He's on Remicade and Lialda and hasn't had any symptoms of Crohn's since surgery.  :dance:


----------



## Jmrogers4

That is great Tink! Here's to 9th graders just over 5 feet tall.  Jack is the same.
:dance::dance::dance::dusty::dusty: Yeah for growth and weight gain!


----------



## my little penguin

Woo hoo
Love when growth kicks in!!!!


----------



## Crohn's Mom

Thats so great to hear Tink ! I hope his success continues for many, many years ! :hug:


----------



## DustyKat

@cic - Wow! What a fab update! 

I am so happy for you cic that things are going so well for O.  

And what a champion O is! Well done O! :medal1: 

Onwards and Upwards. :dusty: 

Dusty. xxx


----------



## DustyKat

@Tink - It so wonderful to read that your son is doing fab after surgery!  

I so hope all continues to go well for a very, very long time to come. :ghug: 

So very happy for you both! :dusty: 

Dusty. xxx


----------



## upsetmom

Tink so good to hear that your son's doing well...:dance::dance::dance:


----------



## QueenGothel

Great News!


----------



## Jmrogers4

Bump - just thinking with new members we could use a reminder of the successes


----------



## Mj1gaynor

Tesscorm said:


> Reading about so many new members’ children being diagnosed lately prompted me to read through our children's Success Stories.  But, it seems that after Dusty's initial post, this thread has been forgotten!   As Dusty expressed in her opening post, it is so scary to find yourself here!  When Stephen was diagnosed, it would have been so comforting to read of success stories of other kids.  At diagnosis, the fears of the unknown were overwhelming; I imagined the worst!  In an instant, my most basic assumption, that my kids would be healthy, disappeared.  I’m not sure I can express my feelings as well as Dusty always does, but I felt disconnected, in a fog and, all the while, being informed of tests and results, medications and risks and expected to make decisions that will affect our child's life! :ywow: But, it does get better and an altered but normal family life does return.  There’s a bit more uncertainty, a bit more worry but Stephen is back to playing hockey and tormenting me with hockey hits, to staying out too late, to watching movies together, to arguing about chores, to planning family vacations! :ysmile:
> 
> Stephen was diagnosed when he was 16 years old.  It already seemed a bit unreal that my son was being admitted to the hospital because, whatever he had, our regular Ped couldn't find the cause.  However, to a degree, I was relieved - now they would find the problem and correct it (permanently).  Never did we expect to be told that they found the problem but couldn't fix it.
> 
> Stephen’s most obvious symptoms had been recurring fever accompanied by diarrhea, back and forth for two months.  Lots of tests had been run - blood, barium x-ray, stool samples, ultrasound and, while there were indications that something was wrong, there was nothing definitive.  Meanwhile, he was lethargic, little appetite and lost almost 20 pounds.  On May 16/11, we took him to Toronto’s children’s hospital and he was tentatively diagnosed within a few hours.  After a colonoscopy, doctors confirmed Crohn’s (in his TI and in some areas of his small intestine, duodenum and colon).  He was given two options – enteral nutrition or steroids.  His IBD clinic is a strong supporter of EN and very strongly encouraged Stephen to attempt the EN.
> 
> He was in the hospital for a week on IV-Flagyl, during the last two days he began EN and was taught to insert/remove the NG tube.  He did six weeks of EN with no food (clear fluids only).  He learned the insert ion/removal of the tube fairly easily.  Prior to his diagnosis, he was the typical teenage boy – sleeping late, starting homework Sunday night!, forgetting his lunches and chores but always with a smile and a whistle:whistleinnocently: – as long as we got him to hockey, life was good!  Somewhere he found the maturity and determination to go six weeks with no food and barely a complaint!   He talked to all his friends about his Crohns and often inserted the NG tube with an ‘audience’.  There are so many posts of parents sharing their surprise and pride at the strength and resilience of our children – we sometimes don’t realize how awesome they are!:medal1:
> 
> His symptoms disappeared almost immediately and back at school the following week.  At the time, he was in two Phys. Ed. Classes (2+ hours per day) and on two hockey teams.  He started PE at a lower pace for a couple of weeks, added back one team and then the other within the six weeks.  Gained 10+ pounds over this time and then reintroduced all foods over the next three weeks.  Once he was again eating all foods, he gained almost another 20 pounds and grew ½ inch.
> 
> His maintenance has continued to be EN at half the dose, 5 nights per week.  Other than eliminating seeds, nuts, popcorn and veggie/fruit skins, he is eating all other foods (I know he’s even had the odd beer, unbelievably with his GI’s approval! …ugghh, another story! :lol:  Then again, his GI’s an Aussie!  Sorry Dusty!:ytongue.
> 
> So, for the most part, other than his nightly NG feed, Stephen is back to his old life – forgetting lunches and chores, his most important issues being the next hockey game or Call of Duty war :tank:!  We’ve had some bumps, some minor symptoms but all quickly resolved (although my worry-metre went off the scale each time!).  His diagnosis has not slowed him down one bit - since his diagnosis, he’s had his best year of hockey (also his worst with a mild shoulder separation, injured knee and a suspension!), he got his drivers’ licenses (what’s one more worry for mom?! ), continued to teach himself guitar and entered a talent competition, applied to universities and will be graduating in June.
> 
> Crohn’s is still always on my mind and I’m always learning of something new to worry about in the future (it’s like I need to stockpile my worries in case I actually have a worry-free day!:duh but  I’ve accepted that this will never go away.  I’ve always fixed what’s wrong in my children’s lives; it’s not easy accepting that I can’t fix this…  and I’m not finished trying yet!
> 
> I don’t know if he’s in ‘remission’ as he still has lingering inflammation and I don’t know how long EN will continue to be his only treatment.   But, things have not spiraled out of control as I’d feared and compared to how Stephen looked and felt and my emotions at diagnosis, this is a success story! :dog:
> 
> I also couldn't have made it through those dark, scary days at the beginning without everyone here!  You have very often become the people I first turn to when I'm, once again, worried and scared! :ghug:  Thanks :rosette1:
> 
> 
> Update 2/28/13 - A short update...  all of the above still applies, Stephen is doing well with only sporadic signs of Crohns, however, following his transfer to an adult GI when he turned 18, his new GI feels that remicade is needed.  Stephen's crohns did not worsen over the year and a half, however, once EN induced (clinical) remission, it seems that while EN kept his crohns 'under control' it did not eliminate all inflammation.  MREs showed that 20-30 cm of inflammation continued to be present in his TI.  He had his first remicade infustion on Feb. 27/13 - hopefully, treatment with remicade will eliminate all the inflammation!!


I just want you to know that the encouraging positive stories are the best medicine for a worried mom!  Thanks so much for all the positive thoughts!


----------



## izzi'smom

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)))


----------



## DustyKat

^^^^ Woohoo Izzi! :dusty::dusty::dusty:


----------



## Clash

WTG Izzi!! Long may it last!!


----------



## araceli

:dance::dance::dance::dance:Great.


----------



## Mehita

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

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!


----------



## araceli

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.


----------



## ChampsMom

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

@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

Mehita said:


> 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.


----------



## kimmidwife

Mehita,
So great to hear this good news!!!!!!
Araceli,
Wishing you guys luck with the Celebrex. Glad your daughter is doing well!


----------



## ChampsMom

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..


----------



## Jmrogers4

Way to Go Alex!  Champ in athletics and in academics.


----------



## Clash

:dance:Way to go Alex!!


----------



## crohnsinct

What an awesome update!  Way to go Alex!  LOVE the motto!


----------



## DustyKat

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


----------



## kimmidwife

Good job Alex!!!!
Also happy to hear the tumor was benign. That is such a relief. Only good things from here on out!!!!


----------



## ChampsMom

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...


----------



## DustyKat

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

Fantastic picture and your youngest is really styling that green cast!  You look fabulous!


----------



## araceli

Very handsome Kids. Beautiful Mom.


----------



## Jmrogers4

Bump


----------



## my little penguin

Ibd kiddo spent the day learning to snowboard falls and all. He normally skis.
He has not been on skis since dx . 
So a good day


----------



## Jmrogers4

That's great MLP, Jack switched to snowboarding about the same age and has never looked back.  He loves snowboarding.


----------



## Mehita

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

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!


----------



## imaboveitall

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.


----------



## DustyKat

That is amazing! Well done Violet and mum! :dusty::dusty::dusty: 

:mademyday:

Dusty. xxx


----------



## Mehita

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


----------



## Tesscorm

What a great post!!! :dance:


----------



## Jmrogers4

:dusty::dusty:
Fabulous news.  Hoping for many boring reports in the future that say the same. :boring:


----------



## DustyKat

That is brilliant Mehita! You sure have :mademyday: 

Onwards and Upwards! 

Dusty. :dusty:


----------



## crohnsinct

Fun reading about some amazing kids with IBD. 

http://www.crohnsandme.com/crohns-scholarship/recipients/#Samantha G.


----------



## vtfamily

Mehita said:


> 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!


----------



## vtfamily

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

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

Bumping up for the newbies.


----------



## DustyKat

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.


----------



## greypup

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:


----------



## Daltonsmom

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


----------



## JSchneider

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


----------



## kimmidwife

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.


----------



## JSchneider

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

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.


----------



## Imerald

Love reading all the success stories.  I can't wait until we can post ours as well!


----------



## JSchneider

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

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


----------



## Mj1gaynor

It is so inspiring to hear stories like this.  That you for sharing and spreading some joy!


----------



## DanceMom

The change in Jack is amazing!! Happy for you all!!


----------



## Tesscorm

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


----------



## kimmidwife

Always happy to hear great news like this! Long may it continue!!!


----------



## Maya142

He looks so grown up! Hope it lasts forever!


----------



## Jmrogers4

Sorry, I did this on my phone and the picture didn't look so huge on there.


----------



## Farmwife

What a blessing to read this. He sure is a handsome guy. Merry Christmas.


----------



## crohnsinct

Wow!  I can remember when Jack first started getting cheeks!  Great post!  Long may it continue! This deserves some dancing poo


----------



## DustyKat

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.


----------



## AZMOM

What a BEAUTIFUL sight!:dance::dance::dance::dance::dance:


----------



## crohnsinct

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!


----------



## Jmrogers4

Woot Woot!  Fabulous update CIC


----------



## CarolinAlaska

That is really awesome!  39 lbs?  How tall is she now?


----------



## Mj1gaynor

Great news!


----------



## crohnsinct

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

crohnsinct said:


> 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".


----------



## Farmwife

Great and happy news. I pray it continues...forever!


----------



## Maya142

What wonderful news :dance: :dance:! Hope it lasts forever!!


----------



## crohnsinct

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.


----------



## Tesscorm

Great update!!!


----------



## kimmidwife

Woohoo!!!! I love great updates!!!!


----------



## Tesscorm

bump


----------



## vtfamily

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:


----------



## kimmidwife

Vtfamily,
That is wonderful news!!!!!


----------



## CarolinAlaska

I know the feeling!


----------



## Jenn

4 year anniversary of my son on Humira. Yay! (*bump *knockwood)


----------



## pdx

That's so great to hear, Jenn!  Thanks for the update.


----------



## CarolinAlaska

Congratulations.  I hope he is doing great!


----------



## Jmrogers4

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


----------



## pdx

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

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

Jmrogers4 said:


> 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


----------



## vtfamily

Great update!


----------



## CarolinAlaska

Glad to know he is still doing well.


----------



## DustyKat

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.


----------



## Clash

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

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!  

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

Just so very happy for all of you!! :kiss:


----------



## my little penguin

Wow !!! Such great news 
Congratulations


----------



## kimmidwife

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?


----------



## Sascot

Great news, doing well and married!! Congrats to her!


----------



## ronroush7

Congratulations


----------



## Jmrogers4

Wow, congratulations to Sarah


----------



## DustyKat

He is army, Kim.


----------



## 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


----------



## ronroush7

Trysha said:


> 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


----------



## Farmwife

: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:


----------



## DustyKat

Ugh! Tell me about Fw! :lol:


----------



## CrohnsKidMom

Such exciting new!  Congratulations!


----------



## kimmidwife

Dusty,
That is awesome! Go Army!!!! I was Air Force!


----------



## Jmrogers4

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.


----------



## ronroush7

Jmrogers4 said:


> 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.


----------



## pdx

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

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.


----------



## kimmidwife

That is so great to hear!!!


----------



## Farmwife

I remembered it all about Jack.  
Wasn't he worried he wouldn't get taller than his little brother?
How time flies. 
So great to hear some good news.


----------



## CarolinAlaska

I remember when Jaedyn and Jack had so much in common.  Your doctor switched him to Remicade and my daughter's doctors are still not making the move.  Your son is doing great.  My daughter is still suffering.  I wish we had the same success story...  I'm really glad for your son's success.  Thanks for the update.


----------



## Jmrogers4

My Christmas Hannukah, Kwanza, Ramadan, whatever you celebrate wish for all these kids is of course to find a cure but in the meantime long and lasting remission.  I know I haven't been super active on here lately but do know even when I'm not posting I try and check in to see how everyone is.
I'm so thankful for my son's doctor who looked beyond labs and didn't just brush my concerns off.


----------



## Tesscorm

What a great update!!!  It's so nice to read it!

And, my wish is also that all the parents will soon be posting their own success stories!  There are too many who have not yet reached lasting remission.   Whether it's a matter of still being in the 'trial and error' stage, or slow moving GIs, or a flare in the middle of remission, I am praying that all is resolved very soon! :ghug:


----------



## Jenn

We are at 5 years success on Humira! 

Still knocking on wood.... and shocked to reflect that's a third of my son's life. :/


----------



## ronroush7

Jenn said:


> We are at 5 years success on Humira!
> 
> Still knocking on wood.... and shocked to reflect that's a third of my son's life. :/


That is great news


----------



## pdx

Jenn said:


> We are at 5 years success on Humira!
> 
> Still knocking on wood.... and shocked to reflect that's a third of my son's life. :/


So glad to hear this, Jenn.  Thanks for the update.


----------



## vtfamily

Farmwife said:


> I remembered it all about Jack.
> Wasn't he worried he wouldn't get taller than his little brother?
> How time flies.
> So great to hear some good news.


I know the feeling.  When his younger siblings surpassed him in height and abilities, he tried to hide it, but it did take an emotional toll on Gus.

Coming up on four years on Stelara, and Gus is now making measurable progress on his growth chart.  It is amazing to see the physical changes, but also a relief to see it on the chart...real, measurable, growth.  He has jumped from the 5th percentile to the 15th percentile!

Even his GI doc noticed his body is maturing and he has the appearance of a young man, not a large boy.

:ghug:


----------



## Chrohn's stresser

Thank you for this place of success. It does help to read about happy, and happier endings, and livings.  Especially just starting out on this long, excruciating, and harrowing road.  There are many unknowns, and I can't believe how very diverse each and everyones story is.  How many different medications, each one taken uniquely.  It seems I cannot see the top of the mountain.  But this does help, this thread.


----------



## vtfamily

True, the journey can be long and difficult.  Happy to finally be in a place where we can encourage others.  :hug:


----------



## D Bergy

Been symptom free for around six years now.  Only medication is Cholysteramine since I no longer have Ileocecale valve.  I only use that when I am working.

I also quit my job of 26 years as I was tired of working shift work, so now I am a rural mail carrier.  Not usually the best job for a person with Crohn's and missing important parts concerning bowel control, but it is working out well for me.  Four years or so and I will probably retire and I hope to do that without Crohn's getting in the way.

I hope everyone else can have similar results however you go about managing the disease.

Dan


----------



## Tesscorm

I just updated S's story in this thread and thought I would bump the thread.

I haven't been around as much as I once was and, maybe because of my absence, it seems there are a few newer parents here.  I don't think any parent ever forgets the heartache and fear that comes with the diagnosis and, as has been said so many times in this thread, it helps to read about success stories.

I realize that not everyone can post their success story here yet but I do pray that one day soon all my friends, every parent, will have their child's story here.  And, hope that some will post their success stories and lengthen the list!

This isn't a 'goodbye', I do still come here fairly often but, now that S is truly an adult, I usually leave the 'kid' related conversations to those who still have kids (I miss that!).  But, I will try to respond to tags, even if a bit delayed.

Lots of hugs to everyone who is still struggling...  I truly hope and pray the struggles end quickly!!  :ghug:


----------



## Jelly loves Peanut butter

Thank you for sharing.  I see remicade was started in 2013 so it makes me hopeful for my son too.  He is on remicade and methotrexate started in sept 2017.  Best wishes and thanks again for the positive post!


----------



## pdx

Thanks for the update! And congrats to your son on finishing university! It makes sense that you won't be around this forum as much now, but please do keep checking in every now and then--your advice has been so valuable to me over the years. And of course we'd love to hear how S is doing, even as an adult.


----------



## SoccerMom47

Tesscorm said:


> Reading about so many new members’ children being diagnosed lately prompted me to read through our children's Success Stories.  But, it seems that after Dusty's initial post, this thread has been forgotten!   As Dusty expressed in her opening post, it is so scary to find yourself here!  When Stephen was diagnosed, it would have been so comforting to read of success stories of other kids.  At diagnosis, the fears of the unknown were overwhelming; I imagined the worst!  In an instant, my most basic assumption, that my kids would be healthy, disappeared.  I’m not sure I can express my feelings as well as Dusty always does, but I felt disconnected, in a fog and, all the while, being informed of tests and results, medications and risks and expected to make decisions that will affect our child's life! :ywow: But, it does get better and an altered but normal family life does return.  There’s a bit more uncertainty, a bit more worry but Stephen is back to playing hockey and tormenting me with hockey hits, to staying out too late, to watching movies together, to arguing about chores, to planning family vacations! :ysmile:
> 
> Stephen was diagnosed when he was 16 years old.  It already seemed a bit unreal that my son was being admitted to the hospital because, whatever he had, our regular Ped couldn't find the cause.  However, to a degree, I was relieved - now they would find the problem and correct it (permanently).  Never did we expect to be told that they found the problem but couldn't fix it.
> 
> Stephen’s most obvious symptoms had been recurring fever accompanied by diarrhea, back and forth for two months.  Lots of tests had been run - blood, barium x-ray, stool samples, ultrasound and, while there were indications that something was wrong, there was nothing definitive.  Meanwhile, he was lethargic, little appetite and lost almost 20 pounds.  On May 16/11, we took him to Toronto’s children’s hospital and he was tentatively diagnosed within a few hours.  After a colonoscopy, doctors confirmed Crohn’s (in his TI and in some areas of his small intestine, duodenum and colon).  He was given two options – enteral nutrition or steroids.  His IBD clinic is a strong supporter of EN and very strongly encouraged Stephen to attempt the EN.
> 
> He was in the hospital for a week on IV-Flagyl, during the last two days he began EN and was taught to insert/remove the NG tube.  He did six weeks of EN with no food (clear fluids only).  He learned the insertion/removal of the tube fairly easily.  Prior to his diagnosis, he was the typical teenage boy – sleeping late, starting homework Sunday night!, forgetting his lunches and chores but always with a smile and a whistle:whistleinnocently: – as long as we got him to hockey, life was good!  Somewhere he found the maturity and determination to go six weeks with no food and barely a complaint!   He talked to all his friends about his Crohns and often inserted the NG tube with an ‘audience’.  There are so many posts of parents sharing their surprise and pride at the strength and resilience of our children – we sometimes don’t realize how awesome they are!:medal1:
> 
> His symptoms disappeared almost immediately and back at school the following week.  At the time, he was in two Phys. Ed. Classes (2+ hours per day) and on two hockey teams.  He started PE at a lower pace for a couple of weeks, added back one team and then the other within the six weeks.  Gained 10+ pounds over this time and then reintroduced all foods over the next three weeks.  Once he was again eating all foods, he gained almost another 20 pounds and grew ½ inch.
> 
> His maintenance has continued to be EN at half the dose, 5 nights per week.  Other than eliminating seeds, nuts, popcorn and veggie/fruit skins, he is eating all other foods (I know he’s even had the odd beer, unbelievably with his GI’s approval! …ugghh, another story! :lol:  Then again, his GI’s an Aussie!  Sorry Dusty!:ytongue.
> 
> So, for the most part, other than his nightly NG feed, Stephen is back to his old life – forgetting lunches and chores, his most important issues being the next hockey game or Call of Duty war :tank:!  We’ve had some bumps, some minor symptoms but all quickly resolved (although my worry-metre went off the scale each time!).  His diagnosis has not slowed him down one bit - since his diagnosis, he’s had his best year of hockey (also his worst with a mild shoulder separation, injured knee and a suspension!), he got his drivers’ licenses (what’s one more worry for mom?! ), continued to teach himself guitar and entered a talent competition, applied to universities and will be graduating in June.
> 
> Crohn’s is still always on my mind and I’m always learning of something new to worry about in the future (it’s like I need to stockpile my worries in case I actually have a worry-free day!:duh but  I’ve accepted that this will never go away.  I’ve always fixed what’s wrong in my children’s lives; it’s not easy accepting that I can’t fix this…  and I’m not finished trying yet!
> 
> I don’t know if he’s in ‘remission’ as he still has lingering inflammation and I don’t know how long EN will continue to be his only treatment.   But, things have not spiraled out of control as I’d feared and compared to how Stephen looked and felt and my emotions at diagnosis, this is a success story! :dog:
> 
> I also couldn't have made it through those dark, scary days at the beginning without everyone here!  You have very often become the people I first turn to when I'm, once again, worried and scared! :ghug:  Thanks :rosette1:
> 
> 
> Update 2/28/13 - A short update...  all of the above still applies, Stephen is doing well with only sporadic signs of Crohns, however, following his transfer to an adult GI when he turned 18, his new GI feels that remicade is needed.  Stephen's crohns did not worsen over the year and a half, however, once EN induced (clinical) remission, it seems that while EN kept his crohns 'under control' it did not eliminate all inflammation.  MREs showed that 20-30 cm of inflammation continued to be present in his TI.  He had his first remicade infustion on Feb. 27/13 - hopefully, treatment with remicade will eliminate all the inflammation!!
> 
> Update 1/24/14 - S continues to do well! :dusty:  He continues with remicade (was moved to every six weeks - no symptoms but testing showed no remicade left at 8 week intervals) and has had no problems with the remicade and no symptoms.  He's gone away to school , so I only see him every few weeks , but he looks good!  He loves school, likes his roommates, is learning to cook and clean and do laundry!! :lol:  And he's still playing hockey!  He had a couple of mishaps, first separated one shoulder and then a dislocated the other but, neither affected his crohns and neither did the remicade affect his recovery.  He stopped supplementing nightly through the NG tube but now continues with 1 to 2 Boost shakes per day.  So far, so good!
> 
> Update 3/26/15 - All continues well and results from most recent scope show 'no active disease' and 'complete mucosal healing'.  While S has been one of the lucky ones who has not suffered greatly from symptoms, it has taken almost four years to completely eliminate the inflammation!  It seems remicade has done its job!  He's now been on remicade for two years (how quickly time flies! :ack and, knock on wood, so far he's not shown any side effects nor any lessening of its efficacy.  Since being on remicade, he had a roommate who had to leave school due to mono  (S did not get sick), had a bout of strep last year, the flu this year and possibly molloscum but, so far, it doesn't seem that remicade has led to a greater number of illnesses nor affected his ability to recover. :thumright:  Aside from crohns, he's almost done his second year of school, still plays hockey, is planning a vacation with roommates and has a summer job lined up!  Hoping, praying I'll be back next year with a similar update!
> 
> Update 6/18/18 - It's been quite a while since I updated S's story.  And, as he's certainly no longer a kid, I thought I would update with a closing update to his 'kid's' story.  He had his graduation ceremony from university last week (very proud mama here! ::rosette2 (he actually finished school in December though).  He's working, still playing hockey and computer war games :facepalm: and doing all the things he should be doing (and, maybe some he shouldn't!  :lol  Crohns-wise, he continues in remission.  He has been one of the lucky ones who has responded to treatment and has had no long lasting or serious issues since dx (knock on wood, throwing salt over my shoulder, and whatever else I need to not jinx this!!).   While it's been 8 years eek since his dx, and my daily worries re crohns are next to nothing, periodically, I do still worry about when the next shoe will drop.  I'm grateful it didn't happen through university or when he was starting work but, the reality is that it will never be a good time to happen. :frown:  But, for new parents, know that things will settle and, as I said in my first post, the news and your fears will bring the worst to mind but, it doesn't have to happen that way.  It may take time to find the right treatment but things will settle and your fears will lessen.  S has been lucky (and I never forget this!) and he was able to continue on since dx with only a few adjustments to his lifestyle.  He has scopes scheduled for November but I'm expecting/hoping that all will be good.  Again, for new parents, know that you've found a great place to meet and share your worries.  The other parents here will give you strength and knowledge to deal with your emotions and be the best advocate you can be for your child!  :ghug:


Thank you Tesscorm - as a new warrior mom, I needed this :heart:


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## Lynda Lynda

Tesscorm :
Your son is an amazing young man.
And you are a fantastic mom.
Wishing your son many more years of good health.


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## Jmrogers4

Thanks for bumping this thread Tesscorm. It's good for us veterans to remember how it was in the beginning to help new parents and sometimes its hard to remember to come back here and post because things are so good and these diseases don't consume your life. 
J is close to 5 years of remission made it through high school and first year of college so far. 
I'm getting ready to drop him off at Camp Oasis this afternoon (not because he needs me to but because I get a vacation by bringing him). I think back to that first year of camp 9 years ago and being so worried about what his life was going to be like now and how terrified I was to be doing him off at a camp for kids with a disease, would he always be defined by it.  Camp was such a wonderful thing for him that he wanted to give back and this will be his second year as a counselor. 
I still hope and pray every day that they will find a cure


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## Tesscorm

For all the veterans out there, if you have some free time to fill sometime, go back and read 'Much Ado about Nothing' thread...  I did a few weeks ago (although I don't think I read it all! ::yrolleyes and had some really good laughs the second time around :ylol: (once again laughing by myself at the computer screen!)...  Farmwife's thank you speach, fair dinghum and roots in boots, bubblers, and so much more!  Considering how active that thread was, I'm surprised I found time to get work done and keep my job!  :lol:

Newbies, when I first joined, I found it a bit odd  that the moms could make jokes and laugh on a site that was meant to learn about and discuss your child's illness. 
But, it was through the jokes and laughs that the friendships and incredible support came.  Take some time and skim through the thread, you may it amusing and then keep it going!  

Because part of the success is also how we, as parents, get through these times! :hug:

https://crohnsforum.com/showthread.php?t=39150&page=2


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## Jenn

*bump
7 years success on Humira for my son, and he's now 17, the time has really flown. Time to start thinking about transition to adult doctors (waaah!). 

There's a 'Citrate-Free', less painful version of Humira available now! Having delays in getting Insurance to switch to it tho, hopefully soon... 

Also still on 25mg MTX which worked to bring the Humira levels back up, curious if he can take a break on it soon or not. The board seems quiet, but it's hard to find time to check in frequently. Hope everyone is doing well.


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## my little penguin

Love it Jenn 
That’s great he is still doing so well !!!


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## pdx

That's great to hear--thanks for the update!


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## Tesscorm

17!!!    What happened to all our little kids?!? 

And, great news that he's doing so well!  Lots of wishes it continues for a long, long time!!


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## Jo-mom

I read all your success stories and want to thank you for sharing them.  It is encouraging to see all these kids do so well.  I hope that one day soon I can add one on as well.


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## crohnsinct

Hey ya'll!  I like to see this not as bragging but sharing what these kids are capable of even when they are flaring!  O has been in a bit of a flare for the past three years. 

She just finished her second semester sophomore year.  She took 18 credits and so far her grades in five classes are A and her sixth class the lowest she can get is a B+.  She is a double major and has a foreign language minor.  She swims on the club swim team and made it to nationals. She went to Ohio to compete for her team.  

She applied to one of her majors and was accepted.  She will start that this summer and compete on a masters swim team locally and volunteer at a resource center for families who have young adult children with special needs.  

O.K. so maybe a bit of bragging but IBD doesn't define our kids.  They define IBD!


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## Lizzyg

crohnsinct said:


> Hey ya'll!  I like to see this not as bragging but sharing what these kids are capable of even when they are flaring!  O has been in a bit of a flare for the past three years.
> 
> She just finished her second semester sophomore year.  She took 18 credits and so far her grades in five classes are A and her sixth class the lowest she can get is a B+.  She is a double major and has a foreign language minor.  She swims on the club swim team and made it to nationals. She went to Ohio to compete for her team.
> 
> She applied to one of her majors and was accepted.  She will start that this summer and compete on a masters swim team locally and volunteer at a resource center for families who have young adult children with special needs.
> 
> O.K. so maybe a bit of bragging but IBD doesn't define our kids.  They define IBD!


I don't see that as bragging at all, I see it as giving us parents hope that our kids can go on to have a normal life and achieve so much. What a great daughter you have you must be so proud.  Good for you, it' a such a tough journey for you too!!

Thank you for sharing your story.


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## my little penguin

Love it


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## Jo-mom

Wow, you should be bragging!  It is unbelievable for anyone to achieve so much let alone someone who has had a flare for 3 years.  Bravo!!!!   Way to go O!  Way to go mama for being such a loving and supportive mom.


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## pdx

That is so great to hear, CIC! Thanks for the update.


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## Maya142

I wanted to bump this thread, so new parents can read some success stories.

I'll add my daughter's - she was diagnosed at 16 with Crohn's which affected all of her colon. She had many aphthous ulcers through her colon, including in her rectum. Her terminal ileum was friable (bled easily) and red and inflamed. Every single biopsy taken showed both acute and chronic inflammation and the biopsies from her TI showed granulomas. She was already on a biologic for her juvenile idiopathic arthritis but it was one that did not treat Crohn's, so she was put on Remicade and Methotrexate. 8 months later, she was scoped again and her colon looked "beautiful" according to the doctor. All the ulcers had healed and it looked great - like she didn't have Crohn's! Biopsies were clean, except for her in her terminal ileum, where they showed mild inflammation. 

We chose to treat her Crohn's aggressively because we had not treated her arthritis aggressively enough when she was diagnosed (and in the years after) and she ended up with refractory, severe arthritis, requiring multiple surgeries due to joint damage from uncontrolled inflammation. We didn't want her Crohn's to become difficult to control or to cause damage, so treating aggressively was the right choice for her.

A few years (and many med changes) later, she is now in college. While she has still been dealing with hard to control, severe arthritis, her Crohn's has been relatively mild. She's had no major complications - no strictures, abscesses or fistulae. She was very, very underweight for several years due to the Crohn's (and Gastroparesis) leading to multiple hospitalizations, Refeeding syndrome and several different feeding tubes. She used tube feeds for several years to get to a healthy weight and to maintain it and now she can eat and really only uses her tubes for medications! We're hoping she will be able to get rid of them soon.

She completed her spring semester despite having C.Diff for the entire semester and then some - 6 months! We tried several courses of Vancomycin, and then another antibiotic but neither got rid of the C.Diff. She had a Fecal Microbiota Transplant (FMT) in May, right after final exams, and that worked! The FMT was done by colonoscopy and the scope showed that her colon looked great and that her Crohn's was in remission on Cimzia. Her Fecal Calprotectin confirmed that - I think her last FCP was 20 something! In terms of her IBD, she is doing well and is excited for her classes to start!


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## pdx

Great to hear this! So glad that the FMT worked and that she was able to finish spring semester. And that she might be able to get rid of the tubes! Hope that this is the year that her arthritis comes under control as well.


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## Jo-mom

Thanks for bumping this up and for your sharing you daugher's success story!   The disease may change the path a bit, perhaps make it longer, but it does not have to stop anyone from reaching their goals/destination.  I applaud all the children and young adults that succeed while having this obstacle, and for the parents that advocate for them as well.


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## Jmrogers4

I'll update - Jack continues to be in remission I think he started Remicade in January 2015 (how's that for a success story, he's been in remission for so long I can't even remember the exact date)  He was 14 1/2 and is now 20 1/2, diagnosed at 10.  He is away at college a junior studying secondary education to be a high school science teacher and coach.  He played baseball for the college the last 2 years but is not playing this year as it takes up a tremendous amount of time and he feels he needs to concentrate on his education as he says "baseball is great but I'll never play at the next level"
He is living the college life and enjoying himself and I think the less I know the better about somethings.  I'm barely involved in his medical care, he takes care of all his appointments dealing with infusions (I still pay any co-pays unfortunately).  He is in the process of switching from his Ped GI to Adult GI and will have an appointment with new GI when he comes home for Christmas, saw his Ped GI for the last time in August before heading off to school.  He has asked me to go with him to make sure he doesn't miss telling him something (Yeah! he still needs me sometimes).


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## pdx

That is a great update, and it's so cool that Jack wants to be a teacher and coach! I really appreciate hearing all the details about college and young adults who are starting to take over responsibility for their health care--I've got all this coming up soon.


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## Tesscorm

Such a great update to read!!  Sounds like everything is going well and he's on top of it all!!  You've done a great job, mom!!   Just really good to hear he's been in remission and moving forward so well!  So glad you posted. 

Where did all the 'kids' go from when I joined??  Unbelievable they're all grown up and young adults!  (And, MLP, yes, you too will soon have a 'grown up' LP !  LOL)

Wishing Jack all the best!!


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## my little penguin

Lp is not quite an adult @Tesscorm 
But almost 16 and 5’10” so definitely much bigger than age 7

@Jmrogers4 glad he is doing so well and enjoying life


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## Jmrogers4

Of course, I post about how well he is doing taking care of his own medical stuff only to find out days later cleaning under the sink in the boys' bathroom he never did the FCP he was supposed to over the summer and the infusion center he gets infusions at near school closed over the summer so by the time he got it figured out he was 2 weeks overdue (he didn't call to tell me until he was in the middle of having his infusion). 
He says he feels great and no issues so I'm going to pretend like he just had it on time.


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## my little penguin

Anyone have directions to NEVERLAND ?


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## Kaviravani

Jmrogers4 said:


> Of course, I post about how well he is doing taking care of his own medical stuff only to find out days later cleaning under the sink in the boys' bathroom he never did the FCP he was supposed to over the summer and the infusion center he gets infusions at near school closed over the summer so by the time he got it figured out he was 2 weeks overdue (he didn't call to tell me until he was in the middle of having his infusion).
> He says he feels great and no issues so I'm going to pretend like he just had it on time.


Is he still taking LDN? Any difference with it?


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## Jmrogers4

He is not,  has been off it for 6 1/2 years.  Had a flare and couldn't get him out of it until he started remicade and has been in remission ever since.   He will be 21 in just a couple of months so pretty much deals with his Healthcare himself now although he does still ask me for advice.  He doesn't want to change anything up now since he hardly thinks about having crumbs except when he's getting his infusion


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## crohnsinct

Bumping this thread because we have had a lot of recent new parents.


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## Jo-mom

Hi everyone, my son graduated from university in May studying in the field of Atmospheric Sciences.  He had applied to a job in his field with the government and was hired in September.  He is now in another province on a training program.  He is doing so well on his own - a young man doing what a young man should do.  Let me remind you that 2 1/2 years ago, I had to drive him as close as possible to his classes because he had mobility issues. He was 109 lbs at 5'8", and I remember before being diagnosed when he said he only felt the best sitting by his computer in his room because it was the easiest thing for him to do - it was a struggle to walk the stairs, or to eat a meal.  Remicade was a game changer.  He is now 150 lbs, and works out and a different person.  For years he was deteriorating slowly and it is just amazing to see the difference.  He is a 22 year old young man who appreciates what most young people take for granted.  He will often say "life is good" because he knows the difference.  I also want to thank this forum for being there for me.  You guys really rock.


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## Lizzyg

You must be so proud of your son and so you should be. It sounds like he has grown into a very independent young man.  

Well done for getting him there. X


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## Tesscorm

What a great update!!  So glad I logged in today and saw your success story!  Amazing to read stories like this!


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## Jmrogers4

That makes me so happy! Love seeing these kids (not kids anymore) out living their best life


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## pdx

Wow--what an amazing change. Thanks for sharing!


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## Lizzyg

I guess really I should post my dauguters story. 
It has been just over three years since my daughters diagnosis of crohns disease.  She was very poorly on diagnosis with all the usual symptoms. She was put on a course of steroids and then onto Humira.  She has had no symptoms of crohns what so ever and no side effects from the Humira. My daughter has had three fantastic years of being a normal active teenager. There has been nothing that crohns has stopped her doing.  She has been on every school trip skiing, France etc.  Has also achieved many fundraising events. 
Not forgetting also getting through having covid with no symptoms other than a very slight tickle in her throat. 

So all in all and fingers crossed she is having a great time.


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## pdx

Thanks for posting, Lizzyg. I love all these stories!


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## pdx

I should add a story too. My daughter graduated from high school in June as one of her class valedictorians and is now a college freshman studying engineering (at home for now, but hopefully she can be on campus in the fall). 

She was really sick when she was diagnosed with Crohn's at age 12. She ended up in the hospital multiple times between December to February that year and had her first Remicade infusion on Christmas Eve--not our best Christmas. She was sick enough that she missed the rest of 7th grade; we home-schooled through June. It took 6 months, but by summer she was in remission and had gone from 70 to 90 pounds. She also finally started getting taller. She was above the 97th percentile for height when younger but at 12 had dropped to the 50th percentile. She's now back at the 95th percentile. 

She missed a few weeks of school now and then in high school due to Crohn's and had a few accommodations: she took one less class each term so that she could sleep in, took online PE, and skipped the marching part of band class. Otherwise she was a normal student and did well in her classes. 

Besides doing well in school, she's grown amazingly in her ability to handle her medical treatments. She has sensory integration issues and never liked going to see the doctor when she was young. Then suddenly she had to deal with blood draws, injections, infusions, and ng-tubes. Needless to say, she didn't handle any of it well at first and was a difficult patient. But she slowly got better with all of it, and now she is so mature about it all. I'm very proud of her!


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## crohnsinct

YAY! Awesome update PDX!  Brought tears to my eyes!  I am also very proud of her  (and you) as we have travelled this path along with you and know all to well what she has faced through the years.  

VALEDICTORIAN?! Can I get a Woot woot!


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## my little penguin

love it !!!!


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## Maya142

Valedictorian??! That made my day!! Love that she has accomplished this considering all she has been through.

I am SURE she will thrive in college! I hope things are better in the fall so she can be on-campus - she deserves that!


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## Tesscorm

What great stories!!  (CIC, great idea to bump the thread!!)

Lizzyg - so great when kids are able to get back on their feet and get back to being a regular teen! Lots of wishes it continues forever!

pdx - what a great update!  I hadn't realized that she had already graduated... and so successfully!!  (maybe I missed earlier conversations)   And, you're right, successes also come in overcoming fears and obstacles!  Something so many of our kids struggle with and, somehow, must overcome all the while dealing with their medical challenges!  Good for her!!!


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## Tesscorm

Seems this thread has gotten lost within the 'Must Read Resources' thread...  thought I'd bump it up so new parents can be encouraged and for old parents to update and add their own successes.


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## Jmrogers4

What a great day to get a notification on this thread. I have so much to be thankful for. Jack continues to be in remission on remicade I think we're coming up on 8 years in January.  He has about another year in college after taking off a year and several degree changes but it's doing well living his best life. He has a wonderful girlfriend we adore. He travels,  works, goes to school. He is just out the adulting, couldn't ask for more.  Hope you're kids stay in remission if they are there or get there soon of they're not.


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## pdx

Thanks for the update! Always love to read them.


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## Tesscorm

Aww, such great news to hear!  I feel like there are some kids here who travelled their crohns' path together with S and, after so many years of discussions, questions, support and laughs, it's great to hear they're all grown up and doing well!  Love it!!


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