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10-14-2011, 02:15 PM   #1
DustyKat
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Success Stories

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

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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10-16-2011, 06:11 AM   #2
DustyKat
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I guess most of you know my children’s stories by now so I will be brief with them.

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.
10-26-2011, 10:10 AM   #3
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Your family always amazes me.
03-13-2012, 03:53 PM   #4
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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! 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!

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 – 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!

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! Then again, his GI’s an Aussie! Sorry Dusty!).

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 ! 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!) 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!

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! Thanks


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! 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!! 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! ) 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. 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!
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil

Last edited by Tesscorm; 03-26-2015 at 10:07 PM. Reason: Update
03-18-2012, 08:06 PM   #5
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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.
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!
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!!
03-26-2012, 08:44 PM   #6
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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.
03-29-2012, 05:17 PM   #7
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Yeah! Yeah! Yeah! That's awesome news!!
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Dx: CD April 2010
Meds: 04/25/13 switched back to Pentasa 3,500mg/day - Lialda brought lower abdominal cramps & exhaustion); 04/05/13 switched to Lialda 1.2GM 3 pills/day verse Pentasa 3,500mg/day, prevasaid 15 mg x 1/day, elemental iron, daily vitamin, calcium w/mag D, 50,000 mg Vitamin D/week, B12, B6 supplements, Cetrizine (for sinus issues)
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03-29-2012, 05:29 PM   #8
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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!

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.
03-29-2012, 09:31 PM   #9
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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.
04-26-2012, 04:50 PM   #10
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Bump
06-07-2012, 07:55 PM   #11
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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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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
09-06-2012, 09:23 AM   #12
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There are a few new parents here... thought it might be time to 'bump' this one up
09-06-2012, 10:36 AM   #13
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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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09-08-2012, 06:54 PM   #14
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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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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013

Last edited by Mehita; 07-09-2013 at 10:39 PM.
09-10-2012, 02:36 AM   #15
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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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Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.
09-10-2012, 08:14 AM   #16
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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!!
09-10-2012, 08:41 AM   #17
Tesscorm
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So great to hear that these kids are doing well!!!
09-10-2012, 10:59 PM   #18
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This thread means so much to me. I keep going back over the posts to help keep me positive for the future. Thanks all!
10-10-2012, 03:13 AM   #19
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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 !
11-03-2012, 07:49 PM   #20
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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.
11-03-2012, 07:57 PM   #21
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Oh man Angie that is so fab to hear! Long may it continue!



Dusty. xxx
11-03-2012, 08:37 PM   #22
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Wonderful news!!!!
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11-04-2012, 04:15 AM   #23
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That's great news! So nice to hear Izzi is doing well after suffering so much
11-04-2012, 04:20 AM   #24
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So glad she's doing well....
11-04-2012, 06:09 AM   #25
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Great th hear!
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
Azathioprine
11-04-2012, 11:03 AM   #26
Tesscorm
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Great news!!! She (and you) so deserve these good times!!! I hope they continue forever and ever!!!!
11-04-2012, 11:22 AM   #27
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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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Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
11-04-2012, 01:40 PM   #28
DustyKat
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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!

Dusty. xxx
01-24-2013, 08:21 AM   #29
crohnsinct
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I think we all need a little pick me up so bumping this thread!
01-30-2013, 07:59 AM   #30
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Join Date: Aug 2011
Location: Belfast, United Kingdom
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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