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Crohn's Disease Forum » General IBD Discussion » Question on Progression of Crohn's


05-02-2016, 06:13 PM   #1
KB24
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Question on Progression of Crohn's

Hi, So i was diagnosed a while ago. when I was 18. From your experience/information is being diagnosed young worse than later? for example, compared to being diagnosed 50+ in terms of progression? What do I need to worry about to help maintain a slow progression.
Thanks.
05-02-2016, 06:16 PM   #2
ronroush7
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Are you asking if it worse being diagnosed when you are young than it is when you are older?
05-02-2016, 06:33 PM   #3
KB24
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Are you asking if it worse being diagnosed when you are young than it is when you are older?
Yes, but my question is specifically if the progression of Crohn's is slower/faster/same when younger versus older.
05-02-2016, 07:02 PM   #4
ronroush7
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I have no one to compare with. When I was 33, I was operated on for both a fistula and hemorrhoids. I had not been diagnosed yet until the following year. I had an abscess at 36. Within the next five years, I had two more fistulas. I went into remission from 1997-2005. I then had an obstruction in 2010. The disease is currently active.

05-02-2016, 07:14 PM   #5
Clash
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Pediatric CD is generally more aggressive/progressive.

I'll tag my little penguin as she can give you statistics for ages. Not sure where 18 falls in there.
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
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PAST MEDS: remicade, oral mtx, humira
05-02-2016, 08:45 PM   #6
my little penguin
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Typically crohns in kids progresses over 10 years from dx and can spread
It also tends to start as inflammatory and progress to fistulas /strictures /abscesses
Adults tend to not have disease type change or spread

That said these statement were before biologics
Ds has been dx for 5 years but so far based on his latest scope things still look good visually at least
He has been on biologics for 4 years
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05-02-2016, 08:50 PM   #7
my little penguin
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Background: Although Crohn's disease (CD) is usually diagnosed at a younger age, a growing population of patients with inflammatory bowel disease is diagnosed above age 60 (elderly). The aim of this study was to compare disease phenotype, behavior, and therapy in elderly patients with CD to young patients diagnosed between 18 to 25 years.

Methods: This retrospective case–control study identified patients diagnosed with CD at age 60 or above (elderly) and matched them by gender and disease duration with 2 “young” controls diagnosed between 18 and 25 years. Demographic data, disease information, and medical and surgical history were collected from the University of Chicago Medicine inflammatory bowel disease database.

Results: Thirty-two patients were identified in the “elderly” group and matched to 64 “young” patients. Crohn's colitis was more common in older patients (37.5% versus 15.6%, P = 0.02) who were also less likely to have ileocolonic, perianal, or penetrating disease with less extraintestinal manifestations. After 1998, there was no difference in the use of steroids, 5-aminosalicylates, immunomodulators, biologics, or immunomodulators + biologics. No difference was found in the rates of bowel surgery between the 2 groups. Elderly patients developed fewer therapy-related noninfectious complications and Crohn's-related abscesses. Three serious infections (staphylococcal septicemia, pneumonia, and cryptococcal meningitis) were identified in 3 elderly patients on combination immunomodulators + biologics.

Conclusions: Elderly CD is more likely to present with Crohn's colitis and less likely to present with ileocolonic, perianal, or penetrating disease with less extraintestinal manifestations. Elderly are more likely to develop serious therapy-related infectious complications. Larger prospective trials are needed to evaluate the risks of CD immunosuppressive therapy in elderly patients.

From

http://mobile.journals.lww.com/ibdjo...&article=00001
05-02-2016, 08:51 PM   #8
my little penguin
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http://www.sciencedirect.com/science...73994614001482
05-02-2016, 09:07 PM   #9
KB24
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Typically crohns in kids progresses over 10 years from dx and can spread
It also tends to start as inflammatory and progress to fistulas /strictures /abscesses
Adults tend to not have disease type change or spread

That said these statement were before biologics
Ds has been dx for 5 years but so far based on his latest scope things still look good visually at least
He has been on biologics for 4 years
That being said how do I know that I'm on the right medication at the moment. I'm on imuran and possibly asacol soon, neither biologics. I do feel better but was wondering should I try to get biologics or settle since this works?
05-02-2016, 09:12 PM   #10
my little penguin
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You always go with what works
Since what works for one may not work for someone else
And what your currently on
May stop working

My kiddo follows non of the rules at all including his presentation of crohns
So as one Gi told us there is no right or wrong med
You just use what works for you at the time

Good luck
05-02-2016, 09:13 PM   #11
ronroush7
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What is your doctor saying?

05-03-2016, 01:17 AM   #12
Bunty
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KB, that's a really interesting question and something I've been wondering about myself, being in the 'elderly' age group (according to the study my little penguin has posted)having been diagnosed two years ago aged 61.
I've wondered about the impact of the disease, the progression, the treatment, and the general toll all this is taking on my body.
I fit the picture almost exactly..at the moment..of someone my age in the study, the latest thing being diagnosed with infliximab related psoriasis two weeks ago.
Bunty x
05-03-2016, 06:04 PM   #13
KB24
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What is your doctor saying?
If you mean in terms of bloodwork as of now ron, that levels are where they need to be, and inflammatory markers are decreased. I'm really grateful that this is under control, just curious on terms of progression. MLP's information gave me some clarity.
05-03-2016, 06:11 PM   #14
ronroush7
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OK

05-04-2016, 08:49 AM   #15
Tesscorm
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I've often wondered about this as well. And, I wish there was an answer!!

My son had his first flare at 16 1/2, diagnosed just before his 17th birthday. But, while it's accepted that pediatric crohns can extend and develop complications, I don't think '18' is a magic number. When you get to 17, 18, 19, I think it becomes a bit more 'grey' in determining pediatric or adult crohns. I think the reference to '18 & under' is a reflection of the average stage of developement of the entire population. While my son has certainly shown developmental/physical changes since then, at diagnosis he was already fairly mature - 5'10", full beard, emotionally mature, etc. While he was still clearly developing, he at the tail end of puberty/development, I think he would fall more closely as being diagnosed/presenting as an adult (when compared to 12, 13, 14 year olds).

Biologics are a great med (my son is on remicade) but, other meds, such as imuran, can be just as great if they're working. If you and your GI have found a med that is working, I wouldn't change just for the sake of changing. There are many people who successfully maintain remission on imuran for years (and there are people who find that biologics fail them).

My son has not had a flare since diagnosis and, for the first two years, my son maintained clinical remission with his only treatment being exclusive and then supplemental enteral nutrition (no meds). So, age does not always determine early progression. We eventually added remicade (3 years ago) because the supplemental EN wasn't clearing up all inflammation and GI worried about future complications if we allowed inflammation to simmer.

But, i do worry about progression and worry about his next flare - when, how will it present, etc. Unfortunately, while I'd still love to find that crystal ball!, I think I've accepted there is no 'norm' that can be anticipated. Crohns is such an individual disease, how it presents, what it affects, how it changes, how you respond to meds, etc. that no one will be able to tell you what will happen in the future. I've thought to ask my son's GI this question but haven't because, in a nutshell, if he tells us he's unlikely to flare again given his history, my son (and me) may become complacent with diet/supplements/meds, if GI tells us its only a matter of time, it'll be a constant cloud of worry, taking away today's pleasures... so, I just don't ask and try not to wonder about it too much.

I know I haven't exactly answered your question but maybe it helps to have a different way to consider this question??
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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
05-09-2016, 03:22 PM   #16
fernando3
 
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I was diagnosed with Crohns in 1970, 20 years old. From 1970-2000 there were hardly any biologics (the beginnings of Remicade). So for 30 years I had drugs that did not work for me: Azulfidine, Asacol, Pentasa.

The disease progressed to my colon, had my descending colon removed and four feet of intestine. The progression went on to my rectum in which I had a fissure which needed to be operated. Also had 3 fistulas that led to another surgery. I started on Remicade and Imuran which I am currently on. I was previously on Humira for 5 years until it stopped working. Then I was on Entyvio for 8 months (did not work at all).

If you are fortunate to start on Crohns in the last 16 years, you have plenty of biologics to try. I am 67 now and have seen a lot of advances in medicine in these last 16 years. There is hope now.
05-12-2016, 08:51 AM   #17
scl
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I started having symptoms of Crohn's disease when I was 20. Was not diagnosed until age 53 with a blockage. A few months after diagnosis I had a bowel resection (9 cm) and no other damaged was noted in my small bowel at the time of surgery. Since I had managed my disease on my own for 30 years, both my surgeon and GI doc decided not to put me on medication.

I continued having diarrhea, but felt healthy and pain free. Switched to a high fiber vegan diet a year ago and have been symptom free since. All blood work and colonoscopies are normal.

Crohn's presents in many different ways. Some people suffer greatly, others, like myself do not. I wish you success in dealing with your symptoms.
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Diagnosed: 2011 (age 53, 30 years of chronic diarrhea)
Surgery: bowel resection 11/2011
Previous meds: none
Currently on: No medication
Supplements: probiotic, bone health supplement, Vitamin K2, Vitamin D
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