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Crohn's Disease Forum » Parents of Kids with IBD » Any insight about crohn's when our kiddos reach adulthood?


04-08-2013, 09:21 AM   #1
Brian'sMom
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Any insight about crohn's when our kiddos reach adulthood?

It seems that young kids with crohn's have trouble with meds working...or keeping them working, etc. We're all constantly posting having to add meds or strenthen meds. And these little kids are taking what most adults take in strength. My husband thinks its because their bodies are constantly changing; puberty, weight, height...etc. Adults seem to get on something that works and go on with life. This is a crystal ball question...but will our kids crohn's ease up from 20's on? I HOPE the answer is YES!! I've heard that if you get it as a kid, it'll be severe always...but why?? That's got to be a guess. I hope some of you have examples of older kids that started with this at a younger age and can add some insight to what's ahead.
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Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
04-08-2013, 10:15 AM   #2
Tesscorm
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Great thread topic! I don't have any insight to offer as Stephen was only diagnosed less than two years ago and was almost 17 already.

But, I agree with your husband's comment... when Stephen was diagnosed, I asked the GI what I could expect going forward, if the flare he'd had would be typical of any future flare, etc. He was very noncommittal but said that the disease tends to change more the younger the child, that as the child develops, so does the disease. Not necessarily 'worse' but that it may 'change'. I didn't know enough about anything to do with Crohns to question any further. But, I think this would imply that once in their 20s, it wouldn't be unreasonable to assume all will stabilize.
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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
04-08-2013, 03:28 PM   #3
upsetmom
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A while ago my GP was on holidays so i saw another DR . She said to me she has seen this disease "BURN OUT" in kids that get it young. I hope shes right.
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Dx Premature Ovarian Failure 2014



04-08-2013, 03:32 PM   #4
Lisa
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Sorry to say I'm one of those who had the disease progress, and get worse as I got older. I'm sure part of it was me not taking proper care of myself, but I did also experience shorter and shorter periods of remission, and eventually developed fistulas.

I've never heard of someone outgrowing the disease - not to say it can't happen - would be great if it did!

I'm at an age where medications were prescribed from the bottom up - started sith sulfa drugs, up through 6-MP and finally on to Remicade after developing the fistuals which didn't heal on their own. Thankfully the Remicade has continued to work with few side effects, going on 8 years and over 50 infusions now.....
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30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
04-08-2013, 03:34 PM   #5
DustyKat
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I don't have time to answer right now Kathy...work beckons, ugh! But I will tag Jennifer and KW into this as they are two that spring to mind just now that have had Crohn's from childhood.

Dusty. xxx
04-08-2013, 03:48 PM   #6
Jennifer
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I was 9 when I was diagnosed and had some pretty severe symptoms. My medications changed every few years and I was in and out of remission until I was 17 when I had a partial blockage from scar tissue and inflammation that my meds (high doses of Asacol, 6MP, Prednisone and Entocort) weren't getting under control. I had my resection at 17. That resection put me into remission and I've been in remission ever since.

My meds have still changed though because 6MP was affecting my liver after 15 years. So now I'm on Remicade to try and stay in remission. I never went off meds after my resection because I don't want to have another one anytime soon or at all for that matter.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
04-08-2013, 03:59 PM   #7
upsetmom
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Come to think of it when my daughter was first diagnosed by a colorectal surgeon i asked him if this disease would get worse as she gets older...he said we'll talk next time but next time never came.
04-08-2013, 08:33 PM   #8
Brian'sMom
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Thankfully the Remicade has continued to work with few side effects, going on 8 years and over 50 infusions now.....
However, even tho you say the disease got worse as you got older, its also an example of a drug lasting a LONG time! 8 Years...that's great. I'm happy its working so great for you May it keep on keeping on!!
04-08-2013, 08:46 PM   #9
rollinstone
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Im not sure, kwalker was diagnosed as a baby and if you asked him he's probably gotten better as times progressed, he was treating with diet recently so that's a positive sign... I can't really give 100% clarity on the matter but I was really sick when I was 18 months old, and had to spend a lengthy time in hospital, fed through IV etc, they never found out what "it" was, but I reckon it coulda been crohns they just didnt give me a colonoscopy... Point being if it was crohns I went into a 20 year remission after a short course of flagyl, but theres no way of knowing... I think theres gonna be some major breakthroughs in medication in the next few years though, specifically SSI amongst others.
04-09-2013, 01:09 AM   #10
CarolinAlaska
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Ssi??
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
04-09-2013, 05:51 AM   #11
rollinstone
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Site specific immunomodulation vaccines, there's a few threads on it if you search on here, I'd link but I'm just out on my phone ATM
04-09-2013, 06:08 AM   #12
DustyKat
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Matt was also 17 when diagnosed so past what you would asking Kathy.

Sarah was younger but not as young as many here. She would have had symptoms at 12 with her diagnosis at 14, she had not started puberty at that point. By the time she was diagnosed her disease was as severe as it could get. She never did get to use medication as she was diagnosed on the operating table. When I first came to this forum it started me thinking about how things may have been different for her if she had gone down the more traditional path. Little did I realise that I would soon have insight into what the outcome may have been via Matt. He did get the chance and for him it made no difference, he still ended up with the same outcome as Sarah.

However for them surgery has proved successful. Looking to Sarah, she will have been in remission for 7 years come July. She has gone from a girl to young woman and her maintenance medication since surgery has remained unchanged, Imuran 50mg daily.
Again, Matt was older but he has continued to grow in both height and weight since surgery and the obvious hormonal changes became more apparent so I do believe he also had developmental delay. He too has been in remission since surgery and his maintenance medication has not changed post op to what it was pre op, Imuran 100mg.

Dusty. xxx
04-09-2013, 08:28 AM   #13
Brian'sMom
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Dusty, It makes me smile to hear your kids' long remission years! And no change to their meds. I know of a girl in my town that had surgery...then everything better since. For us, its not in just one place so we have to keep praying the meds work. Before dx I used to be happy my son was so 'strong' in not getting illnesses...now I'm like; 'C'mon little body...ease up and quit fighting the drugs and let these medicines do their job!!'
04-09-2013, 08:30 AM   #14
KWalker
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I was diagnosed when I was two years (second youngest in Ontario at the time) and I am now 23 years old. I've never had any major surgery but I have had two surgeries for abscesses. Not a big deal really. I've been on almost every medicine available at the time and for me it was a trial and error because not much seemed to work. I've lived a completely normal life as a child/teen and I now live with my fiancee who I'll be celebrating 9 years with on July 5th, I am a full time University student and have a full time job that I go to when I'm not busy with school, and I live a completely normal life now.

I stopped medicine in 2010 and now treat my crohns through diet and psyllium and although my old doctor (currently don't have one) claims I'm not in remission you would never know that I have crohns. I go to the bathroom anywhere from 1-3 times a day (usually only twice) and have a normal BM. I dont know, I'm healthy. Anything anybody else can do, I can do it too.

I've said this a few times on the forum, but I actually consider myself thankful that I was diagnosed at such a young age because this is normal for me now. I know what I have, what to watch out for, and I don't let that get in the way of my life. I couldn't imagine being living a normal life then getting diagnosed in my 30's. I wouldn't want to know what it's like to not have crohns because to me this is a normal life.
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Diagnosed:
Age 2 (1992)

Previous Meds:
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Remicade
Humira
Methotrexate (oral)
Methotrexate (injections)
Cipro
Flagyl

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200mg Simponi, Psyllium
04-09-2013, 08:33 AM   #15
Brian'sMom
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Site specific immunomodulation vaccines, there's a few threads on it if you search on here, I'd link but I'm just out on my phone ATM
Thanks so much! I've never heard of this.

http://www.crohnsforum.com/showthread.php?t=43965
04-09-2013, 08:43 AM   #16
rollinstone
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Don't thank me thank David ;p but you're very welcome! I have high hopes for it, I like the way it thinks of crohns, and attempts to treat it in a completely different manner to the way biologics and immunosuppressants work. Its still early days so it's too soon to tell, but iv just got this feeling they're headed in the right direction, getting warmer and warmer so to speak, until they find a potential cure. (there's actually a guy called Tyler something, whos been in remission since the small trial they did years ago - it was an 8 person trial so nothing big, but 6/8 had sustained remission even after discontinuing the treatment)
04-09-2013, 08:45 PM   #17
Dexky
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Thanks Kathy! I recently considered asking a similar question on a psc forum but I'm too scared!!
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04-10-2013, 09:32 AM   #18
Brian'sMom
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Thanks Kathy! I recently considered asking a similar question on a psc forum but I'm too scared!!
Me too (the scared part), but I'm my own worst enemy! An annoying part of my personality is the desire to KNOW WHAT"S NEXT. Actually the responses I've gotten have made me feel better. I think things will be better once his body stabilizes out.
04-10-2013, 02:18 PM   #19
ProspectorsQuartet
 
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I'll encourage adults to continue to contribute at the support group:

http://www.crohnsforum.com/showthrea...180#post632180

And I'll add that I personally cannot say much about treatment as a child as doctors in my area did not believe it was okay to treat the GI system of a child. Perhaps for the same reason as your child. But I think that philosophy would get your license revoked as a pediatrician in today's world.

Thank goodness.

Since then, I've been able to get all the diagnostics and treatments possible as an adult and it has made a difference.
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Crohn's DX 2012 (False UC 2011) - Symptoms since 1997
Current: 6 -MP 75 mg, Budesonide, 6 mg, Dr. Ohirra pro-B
Past: Flagyl, all Mesolamines (Asacol, Lialda etc...), Levsin, Donnatal(sneak one in here and there...)
Considering surgery
04-10-2013, 06:53 PM   #20
kimmidwife
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This is an awesome thread thanks for starting it. I have been very scared of what the future holds for our children.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
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Crohn's Disease Forum » Parents of Kids with IBD » Any insight about crohn's when our kiddos reach adulthood?
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