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Success Stories

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

Holding It Together
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

Moderator
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

Moderator
Staff member
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:
 
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. :/
 
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:
 
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.
 
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

Moderator
Staff member
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:
 
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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!💜💙❤
 
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.
 
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:eek:, 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?! :eek:), 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!! :D

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 :eek:, so I only see him every few weeks :cry:, 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! :D

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 :eek: (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:
 

Jmrogers4

Moderator
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
 

Tesscorm

Moderator
Staff member
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 :eek: 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! :D

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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*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.
 

Tesscorm

Moderator
Staff member
17!!! :eek: 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!! :D
 
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.
 
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!
 
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.
 
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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