Adults that were diagnosed as young children

[Biggidybates]

Hello... are there any adults on this forum that have been dealing with crohns since they were young children? If so, what medications have worked for you and what has your life been like dealing with this disease? My 5 year old was recently diagnosed with mild crohns colitis and as you can imagine I am worried sick. Thank you,
Chris

 

[Maya142]

Remember that the meds used about 20 years ago are very different from the ones used now. Right now, for kids, biologics and immunomodulators are used. Sometimes just a biologic (like Remicade or Humira), sometimes just an immunomodulator (like 6MP or Methotrexate) and sometimes both are needed (especially with Remicade).

The treatment 20 years ago consisted of a lot more steroids and definitely more surgery...

 

[Biggidybates]

I figured... Just curious as to what has worked for others and how they have handled and managed crohns into adulthood. I know every crohns patient is different. I have been researching all of the drugs, diets, wholistic approaches, MAP and am just wanting to know what has worked for those adults who have been battening crohns since childhood. Thanks for your input Maya!

 

[Maya142]

I'll tag Jennifer...can't think of any other adults diagnosed as children right now. Hopefully others will chime in soon.

According to our GI, prednisone was used a LOT and kids had all sorts of complications from it - weight gain, osteoporosis, cataracts, glaucoma, diabetes, growth delays etc. And surgery was pretty much a given.

 

[emmaaaargh]

Hiya. I'm admittedly a very young adult, but I'm almost 20 and have had Crohn's since just before my 9th birthday (my 11th Crohn's-iversary is this month!). Honestly, I think it's better to have the disease surface in childhood than any other time of life. I learned to deal with it just as I was learning to deal with all the other 'growing up' things - school, friends, puberty, trying to find my place in the world - and it's very much a part of me, one that I think has made me more resilient, considerate, and more determined to do some good in the world.

In terms of treatment, I've followed the standard treatment regimen pretty much - 5-ASAs first, which worked for a few years, until I had surgery to remove a stricture before it became a problem. This was when I was 11, and it was actually a fantastic decision, because it put me in remission at a critical time, so I was able to put weight on, grow, and go through puberty without any of it being delayed. This didn't last, though, and I ended up flaring again on and off for most of my teenagerhood (thiopurines worked, but not well enough), and I'm still flaring now.

The rate at which companies are competing with each other and developing new drugs for IBD is much more promising today than it was even 10 years ago. So don't be afraid of escalating treatment if it seems like a more aggressive approach is needed, because the alternative is letting a flare progress and that's never ideal! I fell into that trap in my teenhood, and now I'm suffering for it, when I should be having the time of my life at university and not thinking about my Crohn's constantly.

In short: don't panic, and try not to think too far ahead. The future is so vast and unpredictable - when I was diagnosed, I never would have believed the scale of drug development and research that's going on currently. Take each day as it comes because trying to account for every possible future will leave you sick with anxiety. I hope for the best for you and your son, and do let me know if you have any specific questions!

 

[Biggidybates]

Thank you for your response emmaaaargh. I am sorry you are having to deal with this disease. This is all new to me. My son appears to be a happy and healthy child. However, I worry that at any moment things could change, based on what others have posted. I just want to be prepared to ensure my son gets exactly what he needs. I appreciate your time and most likely will have questions in the future. Thanks!

 

[Echodog]

I was diagnosed when I was 6 and I’m 48 now. As a kid in the 70’s, the meds used were very different. I was on some ancient med called Gantrisen and then prednisone. Drugs are much much better today as are diagnosing procedures.
I’m sorry for having to watch your child go through this but it’s a treatable disease that can be in remission for years. I hope that’s the case for your child and glad you found this forum

 

[awoenker12]

I was diagnosed when I was 10, and what worked really well for six years was pentasa. I was on it for six years with absolutely no symptoms whatsoever. Earlier this year, I had a flare up, so I had to switch to something stronger, so my doctor put me on 6mp and I think I can now safely say that it is working for me and I am back in remission. Every person is different, and you may have to try several times to find the right medication.

 

[Lisa]

I was diagnosed at about age 7, going on 40 years later....as has been said earlier - medications were different in the 1970-80's than now.....I have been on sulfa drugs, prednisone, moved up the ladder to stronger and stronger drugs.....been on Remicade for about 12 years now with good results....

 

[theflightless]

You should look at the SCD for the kid. It seems to have been particularly good for juveniles. ( the EEN formula used in the following study fits the SCD. )

12. Sustained modulation of intestinal bacteria by exclusive enteral nutrition used to treat children with Crohn’s disease.

Leach, ST.

A group of researchers collected stool data from six juvenile Crohn’s patients at the time of diagnosis, during a short course of EEN therapy, and 4 months after therapy. The microbes in the stool were cultured and quantified and it was shown that the Bacteroides species was significantly impacted by the the EEN therapy in a way that caused it to remain lower in number than it had been upon presentation to the researchers.

from
https://crohnsforyouandme.wordpress.com/

I wouldn't worry too much, science is going to destroy Crohn's pretty soon.
Additionally, each of the anti-TNF-alpha medications work really well(until immunity sets in) for upwards of half of all patients, and the market is on course to be providing more than 10 within the next five years.

 

[my little penguin]

The y do not recommend SCD for kids with Crohns
There was only a small study done at Seattle children’s
On SCD
But the kids were already taking immunosuppressants and or biologics
At the time while doing SCD

In addition most big places (Boston Children’s/ChildrensOf Philadelphia/Cincinnati Children’s)
Found that kids with ibd need a ton of calories so placing them on SCD causes them to lose weight and not grow

Scd works well in some adults but is not recommended at all for kids

The diet recommended for kids is EEN woth partial een with meds
These have proven mucosal healing similar to steroids
Aslo allow for growth catch up and weight gain similar to peers

The window for growth in kids is very short

 

[theflightless]

The SCD doesn't restrict calories at all, and in fact offers a far higher fraction of highly nutritious foods for consumption than the American diet, that is high in empty carbohydrates.

It has specifically been shown in clinics to be effective for kids.
Some studies to look up and review(It takes some education but chemically and biologically, the EEN formula used with only the addition of indigestible carbohydrates(fiber) is equivalent to the SCD. We don't care about indigestible carbohydrates, because very few bacteria can eat them and the bacteria associated with Crohn's are not these kind. All these studies strongly support the SCD for children.)

Exclusive enteral feeding as primary therapy for Crohn's disease in Australian children and adolescents: a feasible and effective approach.
Day AS.

Exclusive enteral nutrition in children with Crohn’s disease
Day AS. Lopez, Robert.

Enteral Nutrition in Crohn’s Disease: An Underused Therapy
Kansal S.

Nutritional Therapy in Pediatric Crohn Disease: The Specific Carbohydrate Diet
Suskind, David.

Specific carbohydrate diet for pediatric inflammatory bowel disease in clinical practice within an academic IBD center
Obih, C.

Response to strict and liberalized specific carbohydrate diet in pediatric Crohn’s disease
Burgis, J.

Perhaps penguin is thinking of something else?

 

[my little penguin]

To clarify I didn’t say scd doesn’t work it does
I stated the top three big pediatric ibd centers in the US (Boston children /children’s of Philadelphia and Cincinnati children’s ) do NOT recommend SCD for kids
They recommend een for 6-8 weeks
And 80% een 20% food for maintenance

Unlike study kids who try it
The kids in clinical practice were losing too much weight and not growing
Only one parent on the parents woth ibd group was able to use SCD in the past 8 years
And the scd was used woth semi elemental formula which was not scd legal to keep weight up

 

[Maya142]

We go to one of the top children's hospitals, which has one of the largest pediatric IBD center. They do not encourage or recommend the SCD diet. Current studies have been iffy on whether it actually helps control the disease or whether it just helps symptoms. Studies have been tiny - the Seattle Children's one had 26 kids! So it is hard to say if it works in PEDIATRIC IBD.

Adult IBD is different from pediatric IBD - there are additional concerns like growth and weight gain with pediatric IBD, as well as puberty to worry about. Pediatric IBD tends to be more aggressive in general.

But anyway, as my little penguin said, they found that children on the SCD tended to lose weight on it. Since IBD kids tend to struggle with weight and growth, they really need to be getting enough calories for them to grow and gain. If they aren't, they won't ever catch up with their peers since the window for growth is small.

No one is debating the efficacy of Enteral Nutrition, exclusive or supplemental. That is used by our GI dept. as a first line treatment to induce remission, and then for weight gain and growth.

I am sure the SCD works for some kids, as it works for some adults and not everybody. But in general, pediatric GIs don't push it.

 

[Nosebag]

Chris

I have crohns since I was ten and I'm 35 now. The disease is different for everyone and what meds work for one person might not work for another. My crohns was managed with steroids,pentasa and Imuran when I was younger and my doctor tried to avoid surgery at all costs. He used Een a lot for bowel rest and for nutrition because I was growing. My disease is severe so I have failed a number of meds and had a few operations. I would not recommend SCD because I think it actually made my disease worse but like I said everyone's different. I would advise that if you are trying any diets or meds and your child feels they are not working then stop them as soon as possible. Don't try and convince yourself the diet is working because you are trying to avoid side effects of medication. Also make sure your child understands the importance of taking there medication even when they are feeling well. I stopped meds a number of times because I didn't want to accept I had to take meds for the rest of my life. Hopefully the cure will be found soon and your child will not have to deal with crohns for long.