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Early Detection

Hello, my 13 year old daughter has what looks to be Crohns, but seems to be at an early stage of it with mild inflammation and no pain, only the occasional blood in stool. My question is, since it was caught early, is there a better chance of remission and any further damage to her insides...This being of course if the disease is kept under control with the right foods/meds/supplements.?
 
Crohn's is not like cancer - where catching it early increases the chances of a cure. For Crohn's there is no cure. But catching it early is still good, because then you can start therapy sooner and hopefully get your daughter into remission sooner and this prevent some or most of the cumulative damage and permanent scarring the builds up from the years of inflammation.

The goal of course is to keep the gut healthy and thus allow her to grow normally and to reduce or prevent the need for later surgery to remove sections of hopelessly-damaged intestine.
 

my little penguin

Moderator
Staff member
So the statistics for kids
75% will need surgery within 5 years of dx
This was prior to the use of biologics which has brought that rate down to 30-40%.

Ds was caught early -mild inflammation-no ulcers -not much bleeding etc.. at age 7

Even questioned crohns dx more than once over the years but when he was switched from humira to Stelara they found inflammation can show up again while you wait for meds to kick in

5-ASA (pentasa etc..) are lowest on the food chain of drugs -takes up to 30 days - Ds failed this one at age 7 just got worse
Not recommended by Cochran reports as a monotherapy for crohns
It only acts as a cream on the top layer of the intestine -crohns affects the entire thickness sonit leaves simmering inflammation underneath
Some Gi s like to “try “ this one
But it’s sorta like aspirin for a brain tumor not going to help much not going to hurt either

Immunosuppressants (6-mp and methotrexate )
6-mp take 3-4 months to be effective
Lots of bloodwork
Not longer recommended for kids
Significantly Increases risk of lymphoma as does imuran (sister drug)
Ds failed this one -raised liver numbers within three months (and left mild inflammation in TI )

Methotrexate (used in jia kids as young as 2) very mild, no liver issues in kids
Takes 12 weeks to work
By shot or pill - some kids nauseous /flu like symptoms with the shot and some with the pill
Folic acid helps side effects
Ds failed the shot (didn’t stop EIM and made him very ill) currently takes the pills with less side effects for jia

Biologics (remicade /humira ) used to be reserved for severe disease but if used early reduces surgery risk etc...
Remicade takes 6 weeks to work
Humira takes 3-4 months

Both have “scary “ possible side effects
But watching them fix your kid
You remember what they were before they got ill
Watching kids daily you often forget they were ill
These meds work miracles imo
Ds started remicade at age 8 after a year of trying other meds
Didn’t think he was that sick until after remicade kicked in

The key is bridge therapy
Meds (oral steroids -or formula only diet for 6-8 weeks ) until the maintenance med kicks in

Some choose steriods
Some een (exclusive enteral nutrition- formula only )
No solid food
This can be kids boost ,pediasure -polymeric formuls
Peptamen jr or peptide - semi elemental formula
-most Gi try this one since it’s broken down but still tastes bad -can be drank orally
Elecare jr /Neocate jr -are amino acid based /elemental formulas
No intact proteins -only need a few inches of healthy intestine -most kids need an ng tube for this one -they place the tube at night -pull it in the am prior to school -Ds drink Neocate jr orally
As 50% of his calories

Older studies showed biologics remain effective longer with 50% formula
And crohns kids need a lot of extra calories to grow /maintain weight - we have seen kids who did not drink anything extra -very tiny

Ds drank peptamen jr as een for 9 weeks at dx

Each med change requires bridge therapy (keep that in mind )

Diet
There is crohns exclusive diet small studies some promise in kids
Scd diet which causes the majority of kids to lose weight
Ok in some adults


Good luck
 

my little penguin

Moderator
Staff member
Here is the thing with crohns
It’s a life time disease which means for a child 70-80 years of time to do damage to the intestine
Kids disease typically changes over a 10 year period
From inflammatory to stricturing/fistulas etc...

Remicade /humira are given for as long as they continue to work or until the person develops antibodies
These are anti-tnf drugs
They are antibodies to tnf alpha part of the immune system.
The body then tries to produce antibodies to the antibodies drug

The reaction rate is higher for remicade (murine protein based )
Ds reacted after 8 months
But he is a super allergic kid who has multiple drug allergies so they were expected it
Humira worked for him for over 5 years till it stopped working

So yes for “life “
But more for now

If you stop biologics then odds are the body will produce antibodies in large amounts and that biologic won’t work later

Also the body will flare again
You continue to use whatever drug achieves remission (daily ,weekly ,monthly etc..) until it no longer works

Second ,third flares etc are harder to treat than the first one Typically

It’s a lot to take in at first
 
I second what Scipio said. The earlier you catch the disease the better in terms of it doing damage from the start. Unfortunately, most people don't find out they have the disease until they are really, really sick and need hospitalization and/or surgery. So yes, catching it early is very good! Catching it early and treating it and getting into remission is also key to changing the disease course. However, just because you may be mild at diagnosis, does not mean you will always stay mild. Or just because you respond to a certain drug doesn't mean you will always respond to that drug.

The thing with Crohn's disease is it waxes and wanes. Even with meds. Sometimes the body just decides to kick it up a notch and flares up. You can treat a flare with steroids or EEN (as explained by My little penguin) to get back into remission and then go about your happy way for years until the next flare.

As MLP explained, sometimes a drug works like a charm and then one day just starts to lose it's effectiveness. It could be months later or years and years later. There is no way of knowing how long it will take. My one daughter with very severe disease was put on Remicade right away and did great for 4 years. She hobbled along for another 3 years until we eventually had to decide to change meds. As her doctor explained, we were suppressing her body's ability to make tnf but it eventually decided to up regulate other inflammatory pathways so now we had to attack the disease from that standpoint. There is no way of knowing what the primary driving force is with your disease. You just have to pick a drug and go for it.

I know from your other posts that your daughter has primarily rectal disease. So does my older daughter. Just a fair warning, rectal disease does tend to be difficult to get under control so it is also good that you are catching it early before it gets a strong hold.

My younger daughter had mild disease at dx. We started with methotrexate (an immunomodulator). It helped a bit but it did't get her fully to remission. At the year mark we added Remicade and she has been in remission ever since. She was diagnosed 4 1/2 years ago and been on Remicade for 3 1/2 and still doing great. All of her disease is in her terminal ileum.

The disease is for life right now but the thing with being dx'd so young is I like to think that medical advances will outpace our kids' disease and that this just means that in their life time they will find a cure.

Crohn's is a chronic disease but the outlook is very bright. Once in remission our kids are able to have very normal lives and achieve and do anything they set their minds to (well except maybe join the army although that might have changed by now...my older daughter was denied ROTC due to Crohn's). Sure they may get sick once in a while and get side lined but honestly people are sidelined from life for a variety of reasons...torn ACL's or any number of injuries/surgeries, mono or any other illnesses, death in the family etc...our kids just happened to get side lined for Crohn's...but they get right back in the game.

My older daughter was able to be a three sport varsity athlete in High School, was a USA swimmer competing at a high level, was an honor student, volunteered many hours a week for a local organization and did all the other normal kid things even though her last two years of high school she was in a bit of a flare. She is now in college, clear across the country, swimming for the club team and still an honor student again in a flare the past two years. She served on mission all of last summer. Just this summer, she had to medically withdraw from school because her Crohn's flare got a strong hold but we are hoping to get her back for the fall semester.

If you want some encouraging news read the Success Story thread in the Parents section. The first year is hard but it gets easier, I promise. I would be lost without this forum. The parents and adults here are a wealth of knowledge. I would not have survived this long without their support and guidance. It really helps to have people to turn to who "get it". However, be warned, most are here or post (especially the parent's section) when things aren't going well so you get a skewed view of the disease. When things are well, most are off living their health, happy lives as well they should. So don't take the thread posts here as indicative of the probability of difficulty. It is just a small sample of the IBD community.

Good luck at the appointment tomorrow. Check in and let us know how it goes. I have a neat little reference for you when trying to decide on meds. I will look for it and post it.
 
Thank you so much crohnsinct and my little penguin and to all of the other that have helped. This is so new to us and we are expecting to hear she has crohns tomorrow. I’m not gonna lie. I’ve been losing sleep and depressed since we have got the news that it looks like crohns. I’ve been doing extensive research and reading many, many stories on here and in other places. I just feel so bad for my daughter. Me being her dad I feel like I should be able to protect her from this and I can’t do anything about it. My wife and I will sure be here for her. But the unknown is so scary since we have not experienced anything like this before in our family. It’s nice to hear encouraging stories, makes my stress a little better. I’m constantly thinking about the future and where we will be and what she will be like with this disease. It didn’t take to long until I noticed the tremendous support this forum has. Such great and knowledgeable people. Thank you so much.
 

my little penguin

Moderator
Staff member
Knowing you will hear the news and hearing the news are two different things
It’s hard
But after you grieve (kids grieve differently)
You will move forward
You got this
With the right meds and docs your dd can do almost anything she wants
Occasionally crohns will flare or she will have blips
But otherwise all good
Dx at age 7 now 15
Competitive swimmer here till things got serious (ages6-14)
Orchestra/baseball / hanging out with friends etc...

Crohns is there but it’s not everything
Good disease control (full mucosal healing ) are key
Nice pink healthy intestines
These are goals which can be achieved
Fecal cal below 50 and normal bloodwork

There are also local ccfa groups for parents and teens
Camp oasis for kids with crohns in the summer

Chronic illness is tough
Teen years are tough
Combo is craziness

It’s a lot of learning for both kid and parent
Thankfully my kiddo was too little
He doesn’t remember before crohns
He always had to drink “shakes “
Get bloodwork etc
These are his norm

You will find a normal too
 
Here is the link to the Parent's section success stories. It is sort of hidden somewhere and hard to find.


Best advice we could give you right now is don't get ahead of yourself. Just deal with the here and now. Life and the disease and treatments etc change so much it is just wasted energy worrying about the future. Definitely read up so you are an educated advocate for your child but try not to go down too many rabbit holes.

Good luck tomorrow. You are at a great hospital. I happen to follow a few of the ped GI's from there on twitter so know you are in good hands!
 

Tesscorm

Moderator
Staff member
Good luck tomorrow! This forum is a fantastic place to learn and find support.

My son was diagnosed at 16, he's now 24. He responded well to treatment and hasn't had a flare since being diagnosed. He's had some minor blips, some infections which may or may not have been related to having a suppressed immune system (meds' side effect) or may just have come from living at a dorm! ;) Since diagnosis, he's graduated high school and university, he played competitive hockey until 18 and continues to play on men's leagues, he's now working, has travelled, goes out with friends, dates, etc.

Crohns is part of his life - remicade infusions every six weeks and possibly the infections he's had but it hasn't stopped him from much.

Keep in mind, most of the people on forums are those that are looking for help. Most that are in remission and living life, either only drop in sporadically or are living their lives and not on forums. :)
 
Hey all, got back from seeing the Dr. and he still does not have an official dx but there is defiantly IBD in there. She has severe inflammation in the rectum part and is being put on a steroid anima for 7 days and a regular anti-inflammatory anima for 30 days and will reevaluate with stool sample and blood work. Also is taking an anti-inflammatory for the mild inflammation around the same location but above the severe part and also mild inflammation were the large intestine meets the small intestine. Also we have an MRI and a visit with an IBD specialist nurse in about 3 weeks. So not knowing what she officially has is kinda frustrating, The Doc said there is an indication of UC with the rectal inflation but also the mild inflammation that is in 2 different spots is a sign of CD. I am not sure if we should push for the Biologic drugs yet or not...I guess we can ask the IBD specialist nurse about that. Thanks again for all of your help and support. Its nice reading all of the success stories as well. It gives hope for a normal life.
 

my little penguin

Moderator
Staff member
What anti inflammatory did they give her ?
Assume it’s a 5-ASA drug which is not recommended as monotherapy for crohns
UC has to be continuous from the rectum on up
Crohns is patchy

Please get a second opinion
At cincy chop Boston childrens etc....
 

my little penguin

Moderator
Staff member
FWIW Ds has a lot of rectal inflammation and definitely has crohns not UC
Granulomas were found thankfully on his biopsy reports otherwise he would be in limbo land as well
 
How frustrating for you. Sorry things weren't a little more clear cut. Generally speaking, it doesn't really much matter if she has CD or UC right now. That really becomes an issue down the road if you have to consider colectomy or when choosing one or the other drug after failing the other usual IBD drugs.

I am guessing they are waiting for the MRE so they have a complete picture of what they are dealing with. This way, if they find inflammation in the small bowel then she definitely has Crohn's. If not, she may still have Crohn's but it is helpful in terms of monitoring disease progress and like I said for more info down the road. If she has Crohn's then a 5 ASA would not be a good therapy for her (agree with MLP here).

Also, helps them see how severe the disease might be. They already know it is mild in the colon/rectum but there is a chance it could be severe in the small bowel so getting this information will help you all with choosing the appropriate drugs. Sorry you have to wait though. You are learning the hard way, a lot of this disease is hurry up and wait...and wait...and watch...and wait.

I wouldn't push just yet for the biologic. Let the docs do their thing and then you can make an educated decision.

As to rectal inflammation and enemas....for some they work really well, for others like my daughter the enema just shoots past the rectum and never really addresses the inflammation. Same with the foam. The only thing that worked for my daughter was steroid suppositories as those got right to and stayed in the rectum. The problem with those is they never reached the sigmoid colon. Always a balancing act with this disease.

Good luck with the enemas! They sound a lot worse then they really are. My daughter was loathe to try them and then when she did, she wondered what all the drama was about.
 
What anti inflammatory did they give her ?
Assume it’s a 5-ASA drug which is not recommended as monotherapy for crohns
UC has to be continuous from the rectum on up
Crohns is patchy

Please get a second opinion
At cincy chop Boston childrens etc....
The name of the dug is Mesalamine
 
That is a 5 ASA. O.K. for UC. Not advised in Crohn's. Especially pediatric Crohn's as pediatric disease by nature tends to be more aggressive.

I would say play nicely for now and wait and see what the results of the MRE are. That might give you the definitive answers you need. If MRE shows inflammation, drop the 5 ASA and move up the pyramid. If not, she could still have Crohn's and likely could have. There are many, many cases of people who thought they had UC and actually have had their colons removed thinking it would fix things only to find they actually had Crohn's all a long. So if they insist on treating her as UC, you can go along with it BUT watch things VERY carefully and make a move (med wise) if things don't improve or get worse. Also, would pursue a second opinion if they say UC and insist on keeping her on Mesalamine. FWIW - there are also many UC patients for whom Mesalamine is too mild a drug and they need stronger.

I know we are hitting you with a lot. Take it a day at a time. First order of business...figure out how to get your kid to do nightly enemas;)
 

my little penguin

Moderator
Staff member
Mesamalmine is a 5-ASA
It can not reduce inflammation on its own
It’s needs a steriod first (oral ) to drop the inflammation down .
It take up to 30 days to work
Only touch the surface and not recommended as a sole drug for crohns

They may not want to reduce inflammation prior to the MRE (make sure it’s an MRE not mri )
MRe is needed as well as a capsule endoscopy (pill cam ) to view the entire system
 
Ahhh a reprieve! Good luck. Insurance should approve it. They are pretty inexpensive as IBD drugs go. Good luck and keep us posted.
 
I have had a hard time dealing with this news. I suffer from anxiety and am a constant worrier. My wife always tells me not to worry so much but I can’t help it. It’s just something that is in my head. I’m always thinking of the worst and makes the present day miserable. I just keep worrying about what if this happens, or that happens, or this doesn’t work or that won’t work. What will we do!!

I know this isn’t a support forum for people with anxiety and constant worry but just thought I would post since this is connected to this disease now.😟
 
Aww. You are NOT the first person to come here with anxiety and worry. Paging Jo-mom, she may have some helpful hints for you. Be gentle with yourself. You JUST got the news. Take some time to process it all. I don't have anxiety or worry but I am a planner so am at one with you on the what if's. I could what if with the best of them and create quite an impressive flowchart or decision tree;)

What I can tell you is, you will all be o.k.. Generally speaking IBD is at it's worst at diagnosis and that is simply because mots people have no idea that they even have it so it goes about it's business silently doing damage and only then rears it's head with a big, ugly, nasty flare. MY older daughter was like that. Received a diagnosis in ICU because her intestines were shot, she was malnourished, septic and her organs were shutting down. Even faced with such a terrible start I wasn't to worried about the future because now we knew she had Crohn's, she was on meds andwe knew the signs to look for so chances are she would never get that bad again.

Luckily your daughter is mild right now and you are getting her dx'd and getting treatments. Points in your parenting bank for that! I think I am still working out of my deficit for missing all the signs early on for my daughter;)

Anytime you feel yourself spiraling jump on here. That's what we are here for! Not just our non expert medical opinions;)
 
Aww. You are NOT the first person to come here with anxiety and worry. Paging Jo-mom, she may have some helpful hints for you. Be gentle with yourself. You JUST got the news. Take some time to process it all. I don't have anxiety or worry but I am a planner so am at one with you on the what if's. I could what if with the best of them and create quite an impressive flowchart or decision tree;)

What I can tell you is, you will all be o.k.. Generally speaking IBD is at it's worst at diagnosis and that is simply because mots people have no idea that they even have it so it goes about it's business silently doing damage and only then rears it's head with a big, ugly, nasty flare. MY older daughter was like that. Received a diagnosis in ICU because her intestines were shot, she was malnourished, septic and her organs were shutting down. Even faced with such a terrible start I wasn't to worried about the future because now we knew she had Crohn's, she was on meds andwe knew the signs to look for so chances are she would never get that bad again.

Luckily your daughter is mild right now and you are getting her dx'd and getting treatments. Points in your parenting bank for that! I think I am still working out of my deficit for missing all the signs early on for my daughter;)

Anytime you feel yourself spiraling jump on here. That's what we are here for! Not just our non expert medical opinions;)
Thank you so much, your kind words and info always helps. It is a lot to take in. I’m just really nervous and anxious about this new thing in our lives called crohns. I always think a lot as why us? Why my daughter? What is the changes and she got it ? But it’s here now and we have to deal with it.
 
Hi Nolan11, I see I was paged! My son is older and was diagnosed last year with moderate to severe crohn's and also has arthirtis due to the crohn's. He was 19 when diagnosed although he probably had it for about 5 years - simmering slowly in his intestines. He started showing signs probably in his mid teens but nothing too obvious. It is really good that you caught this early. I started to blame myself for not doing something sooner, as all parents do. I was blown away when I heard first of his arthritis (which was more apparent a couple years ago and took awhile to be diagnosed). The rheumatologist was actually the one who referred my son to a GI specialist and within a short time, we found out about the crohn's. I cried often - and then worried often. It does get better. I can say that for sure. Last year, he couldn't walk, bathe himself, and it was so painful to see. Then finding about the crohn's was the topping on the cake. And then came the treatment. Before treatment, he was getting a bit better in terms of his arthiritis as he had been doing physio 3 x a week, but after his first remicade infusion, he immediately felt better with both the arthritis and the crohn's. Adjustments to treatment had to be made a few times, but now he is at a higher dose and is doing well.

He is a young adult and I do still worry, but it's so much better now that I understand treatment now, and with the help of this site and these amazing parents (mostly moms), I found sanity. I read up everyday and am still learning. You will feel better. Your daughter is getting the care way earlier than my son did and this will prevent or delay worse things from happening.

Sometimes I worry and create a scene that isn't even reality. I used to think my son would never have a normal life but now he is working part-time for the summer (couldn't last year), driving (couldn't last year) - socializing (couldn't really last year), able to walk around campus to his classes ( couldn't last year) and much more.

Your daughter is so lucky to have you advocating for her. You will worry less and things will get better. I did cry more often for the first couple months and now I don't cry at all!

Share your thoughts or worries or anything at anytime. You've come to the best forum around. :)
 
Hi Nolan11, I see I was paged! My son is older and was diagnosed last year with moderate to severe crohn's and also has arthirtis due to the crohn's. He was 19 when diagnosed although he probably had it for about 5 years - simmering slowly in his intestines. He started showing signs probably in his mid teens but nothing too obvious. It is really good that you caught this early. I started to blame myself for not doing something sooner, as all parents do. I was blown away when I heard first of his arthritis (which was more apparent a couple years ago and took awhile to be diagnosed). The rheumatologist was actually the one who referred my son to a GI specialist and within a short time, we found out about the crohn's. I cried often - and then worried often. It does get better. I can say that for sure. Last year, he couldn't walk, bathe himself, and it was so painful to see. Then finding about the crohn's was the topping on the cake. And then came the treatment. Before treatment, he was getting a bit better in terms of his arthiritis as he had been doing physio 3 x a week, but after his first remicade infusion, he immediately felt better with both the arthritis and the crohn's. Adjustments to treatment had to be made a few times, but now he is at a higher dose and is doing well.

He is a young adult and I do still worry, but it's so much better now that I understand treatment now, and with the help of this site and these amazing parents (mostly moms), I found sanity. I read up everyday and am still learning. You will feel better. Your daughter is getting the care way earlier than my son did and this will prevent or delay worse things from happening.

Sometimes I worry and create a scene that isn't even reality. I used to think my son would never have a normal life but now he is working part-time for the summer (couldn't last year), driving (couldn't last year) - socializing (couldn't really last year), able to walk around campus to his classes ( couldn't last year) and much more.

Your daughter is so lucky to have you advocating for her. You will worry less and things will get better. I did cry more often for the first couple months and now I don't cry at all!

Share your thoughts or worries or anything at anytime. You've come to the best forum around. :)
Hello Jo-mom, thanks so much for your story and the kind and encouraging words. Its much appreciated and you are right, this forum has been so much help already. A lot of kind and knowledgeable people here. :)
 
Hey Nolan11,

Just checking in on you. Hoping the fact that you haven't been around means you are relaxing and not stressing too much.
How are the enemas going? Should be getting the MRE next week right? How is your daughter feeling?
 
Hey Nolan11,

Just checking in on you. Hoping the fact that you haven't been around means you are relaxing and not stressing too much.
How are the enemas going? Should be getting the MRE next week right? How is your daughter feeling?
Thank you so much for following up with me. We have been really busy lately with vacation and now the Dr apps. We are currently sitting in the room waiting for her to drink the funny tasting liquid before here MRE. Here enemas have been going fine. She has not complained one bit and no side affects at all. She has also been feeling just fine, still has had no other symptoms other then the occasional blood in stool. She had trouble swallowing the 5- ASA pills so we got the gel capsules approved and can take them apart and put all the little balls on a spoon of applesauce, yogurt, or pudding. We also meet with the IBD nurse specialist today after her MRE, she got blood work already as they were putting in the IV. And we have a separate app tomorrow with Dr. Rudolph who we hear is one of the best at Children’s Pittsburgh. We also found out while on vacation visiting my wife’s family, that her cousin who is now 30 years old was diagnosed with Crohns about 3 years ago...so looks like it does run in the family.
 

my little penguin

Moderator
Staff member
Ds was dx at age 7 and could not swallow pills
But with crohns it is a necessary skill
5-asa are absorbed better (further down the Gi tract ) if they are still in the capsule


This should help
We emptied the capsules in applesauce
Then put the capsules back together for practice
Also used mini m&m
Tic tacs
Rice
Worked out way up
Showed him meat that while chewed was much bigger than the tiny capsule
It floats so the head toss is needed
Candy to swallow that melts is great
Less pressure and helps them learn
She can do this

Of all else fails
Oroflo cup
But given her age
Pills will be a necessary evil

Good luck woth the MRE

 
Ds was dx at age 7 and could not swallow pills
But with crohns it is a necessary skill
5-asa are absorbed better (further down the Gi tract ) if they are still in the capsule


This should help
We emptied the capsules in applesauce
Then put the capsules back together for practice
Also used mini m&m
Tic tacs
Rice
Worked out way up
Showed him meat that while chewed was much bigger than the tiny capsule
It floats so the head toss is needed
Candy to swallow that melts is great
Less pressure and helps them learn
She can do this

Of all else fails
Oroflo cup
But given her age
Pills will be a necessary evil

Good luck woth the MRE

Thank you 😁👍🏻
 

my little penguin

Moderator
Staff member
Wait what ???
They don’t do cte (cat scan ) on kids woth crohns anymore too much radiation
They use MRE instead .
If she ever has to have another scan
Insist on an MRE
I had to put my foot down after the first cte when I didn’t know any better

Good luck
 

my little penguin

Moderator
Staff member
Also check
May have been an insurance thing
If she doesn’t have a crohns dx
Or your insurance doesn’t like to cover MRE
Ct scan is much cheaper than mri
So worth checking
May only be covered for certain dx codes
 
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