[Extremely depressed] Help - is it possible to stop the med & reverse autoimmunity?

[asadmom]

Hi, this is my first post to this forum. Thank you for your support in advance.

I will keep this short as I am having a hard time retelling this nightmare. My son (12) was diagnosed with Crohn's in fall last year (2021). His doctor prescribed him the bi-weekly Humira shots and we've done it 9 times so far. He is psychologically scarred from all the experience and I don't think I can hang in there much longer. We are living through a nightmare that we can't wake up from. Humira did not help him gain weight and I believe he is going thru some other random side effects as well.

His doctor strongly believes that meds are essential in controlling Crohn's (if it's not Humira, it will be something else) because the alternative is severe health issues or death.

I have two general questions:
1) I have been looking at diet plans, exercising... Is there a way to just do diet and exercise and not have the med while keeping Crohn's happy? If you have achieved this miracle, could you please share with me?
2) Can we take a step back and find ways to correct or reverse autoimmunity?

Again, thank you for reading me story and I hope you can help me.

A very sad mom

 

[Pangolin]

Crohn's can be a very, very tricky thing to get under control.

The first thing I would recommend for any kid with Crohn's (and most adults, too) is to try out exclusive enteral nutrition (EEN). This is where you drink only formula for a period of time. Often, people see almost immediate results with much lower pain and inflammation. This is usually done for 8 to 12 weeks, but it can be done longer if needed.

At the beginning, I think antibiotics also help. I've seen abdominal pain disappear from amoxicillin and metronidazole (either in combination or individually). This is only a temporary measure, but it can help some.

I don't like anti-TNFs (eg Humira), and I believe their efficacy is overstated and their side effects are underrated. However, they seem to work for some people.

I had a situation where my 11 year old kid was on Remicade (another anti-TNF), and not only was it not working but also it was making the problem worse. However, the doctor believed it was helping. It was very difficult to figure out how to navigate getting him off Remicade and moving toward better options. (What's working currently? Surgery (probably nothing would have really worked without the surgery) and then Stelara, with EEN used previously as necessary.)

What is it that's been so bad about the Humira?

Also, Crohn's is probably not an autoimmune disease, and the causation is still very much unknown.

 

[asadmom]

Hi @Pangolin, thank you for your post!

All 3 of my doctors said it's an autoimmune disease where the body is fighting itself. Could you please enlighten me on why it's probably not?

I looked up EEN (thank you) and I think it will be very hard for him mentally and physically. He is already psychologically scarred from this whole experience and this is one reason why we are going thru a very hard time trying to live a normal life. There is no normal right now...

He is terrified of Humira and he is continuing to lose weight (he's had 9 shots so far so that's about 4.5 months). According to his doctor, you would see a night and day difference in him in terms of weight and energy. Unfortunately his weight is not going in the right direction and he is very tired all the time. There might be other side effects... and I don't even want to think about them. We do blood/stool tests and I am in a state of paranoia I refuse to see the numbers. It's so hard to figure things out and every low or high flag just sent me into a state of despair because I don't know what is wrong... is it due to 1) IBD? 2) Humira? 3) he has other problems? He still has so many problems I don't know where to tackle.

The reason I asked for docs supporting IBD management via diet is because none of our 3 doctors believes in it therefore I won't be able to get a routine blood check to ensure the diet or lifestyle changes can help or need tweaks unless he is on Humira or Remicade. I "assume" if a GI doctor supports diet therapy then we can go off of Humira and go on some type of healthy diet and get blood work like every other week or month to make sure his inflammation does not come back. Or else we know medication is the only way out.

He is terrified of Humira and he is continuing to lose weight (he's had 9 shots so far so that's about 4.5 months). According to his doctor, you would see a night and day difference in him in terms of weight and energy. So unfortunately his weight is not going in the right direction and he is very tired all the time. There might be other side effects... and I don't even want to think about them.

The reason I asked for docs supporting IBD management via diet is because none of our 3 doctors believes in it therefore I won't be able to get a routine blood check to ensure the diet or lifestyle changes can help or need tweaks unless he is on Humira or Remicade. I "assume" if a GI doctor supports diet therapy then we can go off of Humira and go on some type of healthy diet and get blood work like every other week or month to make sure his inflammation does not come back. Or else we know medication is the only way out.

I can't follow SCD closely right now because there are so many rules so the first few things I am tackling is to get rid of 1) gluten, 2) dairy (aged cheese one a week) and 3) refined sugar. I know this is far from perfect but I am also considering his mental health as I am making these huge changes and I am really praying for some help or some guidance so he can thrive and gain weight.

This. is. really. hard.

 

[Scipio]

All 3 of my doctors said it's an autoimmune disease where the body is fighting itself. Could you please enlighten me on why it's probably not?

Your docs are kind of behind the times. Years ago Crohn's was viewed as an autoimmune disease because it does consist of the body damaging itself through an over-active or inappropriate immune response. But it has since become apparent that the damage to the gut is more like collateral or innocent bystander damage. No autoimmune target ever been identified. In Crohn's the body is not directly attacking itself as it does in the case of say RA or lupus. Instead it is attacking something else, probably a bacterium of one sort or another, but its battle with the bacteria is also damaging the nearby bowel and sometimes other tissues. That's why drugs that tamp down the immune system can often reduce or prevent the damage to the bowel and relieve the symptoms. Those drugs are a godsend for many patients - giving them a normal or near-normal life back. But they do not cure the underlying problem.

Several different bacteria have been identified as candidates for the Crohn's-causing bug. The candidates come and go like fashion fads, but none have so far been proven to be THE one cause of Crohn's. It seems likely to me that multiple different germs, combined with the right environmental exposures (including diet) and genetic susceptibilities, can be involved in triggering Crohn's. There is no one great answer that explains all the mysteries of Crohn's.

 

[Pangolin]

You can always try tweaking diet, but I doubt you will get very noticeable results unless you go to something as extreme as EEN. I wouldn't expect too much from SCD.

My advice to you would be to talk to your doctor about the continued weight loss, etc. The Humira should have stopped weight loss by now if it were sufficient, so clearly something else or something additional needs to be done. Maybe that means adding methotrexate, maybe adding more Humira, or maybe something else entirely. A complete evaluation including MRI and colonoscopy can help you figure out what the current status is, exactly, and then you can use that to compare with the status in the future after you change something. Also, if the doctor sees substantial inflammation in the MRI or colonoscopy then it will be obvious that something else needs to be done (if that isn't obvious enough already).

In general, the right treatments will make things a lot better, and it can take a while to figure out what's needed. Keep pushing and eventually you should find something that works.

 

[Delta_hippo]

Crohn’s is horrible when it is not under control and I am sorry your little one is suffering. I agree with pangolin without knowing numbers (crp from blood test and FCP from poo test) it doesn’t sound like humira by itself is working well. Whether that means try something else or add something else is a conversation to have with doc. If the injections are freaking him out ask about stelara- don’t have to inject so often.
Diet is worth looking at but you are in “as well as” rather than “instead of” meds territory. At age 12 you want to throw everything at this disease to get him through puberty and growth. EEN has an evidence base for kids and you can then transition into CDED diet, I think I read a paper that some kids did part EEN and part CDED and still saw benefit. You could also look at IBD-AID which is a little gentler than SCD.
I would suggest monitoring his calorie intake (maybe an app) as it is very easy to under eat when you feel rubbish but malnutrition adds to the problems. He needs energy for healing. Try smoothies for extra calories and nutrients (fruit, veg, plant milk, nut butter in a blender with a little honey).
Ask them to check iron level on next blood test anaemia is very common with Crohn’s and adds to the no energy/ feeling crap.
This must be so awful for you. Maybe try and distract yourself with figuring out some healthy recipes- if you go the ibd-aid route there is a great Facebook support group.
Also is it worth asking doc for a therapy referral for some emotional support for him - such a lot to go through poor mite
Things will get a lot better when you have the right drugs and diet combo figured out but it can be trial and error getting there
There are also new treatments on the horizon so even if things look bleak now there are many reasons to hope for a brighter future
Some people also benefit from adding supplements like vitamin d, probiotics (eg vsl3) maybe worth discussing with your doc
No doctor is going to say go diet only for a 12 year old losing weight on humira and if they did they would be reckless. Priority one is get the inflammation under control. Whether he can wean off down the line is another matter.
Best wishes with it all

 

[Delta_hippo]

Also check he is on the humira that doesn’t sting like crap I think it’s the citrate free one

 

[asadmom]

Our leading GI doc is from Stanford Children hospital and with her 25 years of experience I guess I do need to believe her when she said "he will be on Humira for life", "Crohn's is an autoimmune problem" and "no diet will fix Crohn's". She along with other physicians have been handing me what feels like a death sentence for a while now. If I am being rational (and I have to be) I just cry and nod.

He gets the 40mg needle every two weeks and has skin reaction (where the injection site swells) every time. I have his stool results and I don't have the stomach to look at them right now because I know they will be flagged all over.

Question on EEN... why is it EEN can fix Crohn's? Is it because we are starving the bacteria?

Thank you all for replying. I really appreciate thoughts and experiences from people other than physicians, at this time.

 

[asadmom]

BTW, he is anemic (low iron) but high in ferritin so his doctor thinks something is wrong, ie some inflammation somewhere because iron and ferritin should go hand in hand and not in opposite of each other. All in all, I can't look at his test results. It's too harsh.

 

[my little penguin]

Look at the test results
You need to understand what is your kids normal - not the lab range normal
You need to be an expert in your child
Stanford isn’t big on een
Most other large university pediatric centers are
Children’s of Philadelphia (chop )
Boston childrens.
Cincinnati childrens (cchmc )
All use een (exclusive enteral nutrition)

injection site reactions (swelling at the injection site but not anywhere else ) are very normal
Especially with humira
We found arms gave reactions but thighs not so much
Icing afterwards helps
Localized reactions such as injection site are not indicative of future systemic reactions (anaphylaxis)
Ds has had anaphylaxis to kineret but never humira


do you use the pen or the syringe ?
Pen makes a loud click - we avoided it
Syringe lets the kiddo be in charge more
They put their hand over yours and tell you when to stop and start
At 12 he can be taught to give his own shots
If the shots are upsetting him
See a medical psychologist
They can teach him to cope better
Yes crohns is for life
But in no way a death sentence at all
Your child will follow your lead
Teach them to look at labs
You will blink and he will be in college handling all meds on his own

mine was dx at age 7
Now 18
He knows his stats for bloodwork and fecal cal
What meds are needed and what can happen
He saw a psychologist at 9 for humira shots specifically (they had citrate then ) due to burn
Went from screaming /crying to no big deal
Only took two sessions
You need to cope and so do they

11 years almost
Crohns for the most part is not a big deal
Gi visit 2-3 times a year
Bloodwork every 3 months and scopes every 5 years
He takes Stelara and methotrexate now
But was on humira from 9 till 14 ish
Yes it’s for life
But you would know he had it - once you get the right meds. - things even out
It takes time
Read
Learn
Ask lots of questions on the parents forum
We have all btdt in the beginning
The worry and crying
But we learned From other parents here

fwiw Ds did een at least three times

Longest one for 9 weeks at the beginning
Did cded -didn’t work for him

you will get there
Realize flag are for folks who are not on meds or have a disease - nothing more - just so when docs know to investigate - they know what is going on already in your child’s case

 

[crohnsinct]

OK here are my thoughts real quick info particular order.

First - if SCD is too much work, then I think you have to rethink trying to treat the disease without meds. All of the diets require work. They are simple but they are not easy. Add in that your son is a teen and he has to be very motivated himself as he will be out of your sight for much of the day.

Second - my daughters are seen at Stanford and it most definitely is VERY pro EEN. Also VERY pro diet and a number of other alternative therapies. They are actually a study site for the SCD/CDED study that is going on right now. One of the practitioners there actually has a husband with Crohn's and he manages his disease solely with SCD. Many of the families on the SCD forum I belong to are patients at Stanford Children's. The registered dietician at the pediatric center is AMAZING. Is your son being seen at the pediatric IBD center? You mention his doc is a female and one of the female docs who handles IBD at the center is extraordinary and world renown. I would be very surprised from your description if she is on your son's case. My daughter has been in and out of the hospital at Stanford numerous times so we pretty much know all of the GI's there as well as the fellows. If you want, PM me with the docs name and we can talk.

Third - if your son is having a rough time, please ask for a referral to the IBD center psychologist. They are wonderful and can really help adjusting to the diagnosis, processing what it all means and helping him to understand all the information and learn to weigh pros and cons and become an active member of his team and advocate for himself.

Fourth - did the GI pull a Humira levels test? I ask because if you are not seeing any progress yet it could be because he needs to move to a different dosing schedule. Perhaps, every 10 days or every 7 days will help. But you need to know what the levels are in his body because if they are at therapeutic range or he is building antibodies, then increasing the Humira won't help.

Fifth - I second the no burnHumira and wonder if he is using the pen with the no sting formula.

Sixth - I would ask for a referral to a registered dietician at the center because they are amazing and will help you optimize nutrition regardless of what therapy you choose. My daughters LOVE their RD at Stanford and I think make up reasons why they need to see her.

Last but not least I want to echo what MLP said. The first year is the hardest but once you figure out the meds and your Childs's disease patterns etc, they lead very full and rich, normal lives. Both of my daughter's were multiple sport varsity athletes, on honor roll, chosen to travel abroad with humanitarian organizations, active in their church youth group etc. They are both in college across the country, one is playing an NCAA sport and the other just graduated with two degrees in 4 years and is in Grad school….mind you she did all this while flaring the past 5 years. So even without the disease being 100% completely controlled, she still managed to lead a very full life. Try to read the success stories in the parents forum. It helps to see the other side.

Also, do you have a therapist? It might help for you to talk this whole thing through with someone.

 

[crohnsinct]

One last comment….even if your GI supports diet therapy, it does not always mean you can come off Humira. They might have you add it first, watch and see how things go for a while and then when your son is in deep, deep remission as evidenced by scopes and biopsies, then they may entertain dropping Humira. The one HUGE caveat is that you will not know for sure which thing got him to that remission…was it diet or did Humira finally kick in AND once dropped, if inflammation returns and it turns out it wasn't the diet controlling the disease, your body build antibodies to Humira and you may not be able to pick it back up again and then you have just lost a drug. Add to that the fact that your first drug of choice has the best shot at working so you will then be on to the second drug and it's chances with be slightly less. This is why on the parents forum we try everything possible and exhaust all avenues before dropping a drug but when it is time it is time.

 

[asadmom]

Thank you @crohnsinct! Just pm'ed you.

 

[Pangolin]

Our leading GI doc is from Stanford Children hospital and with her 25 years of experience I guess I do need to believe her when she said "he will be on Humira for life", "Crohn's is an autoimmune problem" and "no diet will fix Crohn's".

I'd be thinking about a new doctor, personally. Calling it autoimmune is a big red flag for someone who's not keeping up. Diet won't "cure" Crohn's, but EEN is a very effective treatment. There are various reasons why Humira is almost certainly not going to be a life-long treatment. All of those statements are just wrong.

 

[Pangolin]

This is why on the parents forum we try everything possible and exhaust all avenues before dropping a drug but when it is time it is time.

For the record, this idea has caused major problems for me and my son, and I believe much more in moving on sooner rather than later if something isn't working.

 

[crohnsinct]

I happen to know the their doc and she is a well known leader in pediatric IBD circles. She may have explained the disease as an immune mediated disease or some such way to make it easier for a very stressed parent of a newly diagnosed child to understand. She is extremely supportive of EEN and diet therapies and I also believe may have said the child would be on medicine for life but not specifically meant Humira.

As to trying to hold on to meds as long as possible, well we are at the end of the road with my daughter so I guess there are two sides to that debate and I never meant to hold on to a med to the point of letting damage occur but rather to make sure you have tried everything possible, in a swift fashion, to optimize therapy.

 

[my little penguin]

Holding on to a med
Isn’t letting damage or severe side effects occur
But simplify not jumping ship to a new med when the first bump comes along or but adding meds when it hasn’t worked yet to see if it can
Only because your child can run out of meds used to treat quickly
Especially when they are under 12
Insurance gets very picky on what they approve
My kiddo has gone through three different biologics (remicade humira and Stelara) in 10 plus years
Thankfully he is 18 so doesn’t need pediatric approval anymore for meds
But still nothing much left for him to “try “ if his current medication fails (simponi and cimiza which are not as successful, entyvio is out due to arthritis)
You start getting into throwing random drugs that are not approved for crohns at the disease and hoping

 

[asadmom]

For the record, this idea has caused major problems for me and my son, and I believe much more in moving on sooner rather than later if something isn't working.

Hi @Pangolin, you mean the idea of switching too slowly? Sorry I am not quite sure... you mean when the med or diet is not helping?

 

[asadmom]

Crohn’s is horrible when it is not under control and I am sorry your little one is suffering. I agree with pangolin without knowing numbers (crp from blood test and FCP from poo test) it doesn’t sound like humira by itself is working well. Whether that means try something else or add something else is a conversation to have with doc. If the injections are freaking him out ask about stelara- don’t have to inject so often.
Diet is worth looking at but you are in “as well as” rather than “instead of” meds territory. At age 12 you want to throw everything at this disease to get him through puberty and growth. EEN has an evidence base for kids and you can then transition into CDED diet, I think I read a paper that some kids did part EEN and part CDED and still saw benefit. You could also look at IBD-AID which is a little gentler than SCD.
I would suggest monitoring his calorie intake (maybe an app) as it is very easy to under eat when you feel rubbish but malnutrition adds to the problems. He needs energy for healing. Try smoothies for extra calories and nutrients (fruit, veg, plant milk, nut butter in a blender with a little honey).
Ask them to check iron level on next blood test anaemia is very common with Crohn’s and adds to the no energy/ feeling crap.
This must be so awful for you. Maybe try and distract yourself with figuring out some healthy recipes- if you go the ibd-aid route there is a great Facebook support group.
Also is it worth asking doc for a therapy referral for some emotional support for him - such a lot to go through poor mite
Things will get a lot better when you have the right drugs and diet combo figured out but it can be trial and error getting there
There are also new treatments on the horizon so even if things look bleak now there are many reasons to hope for a brighter future
Some people also benefit from adding supplements like vitamin d, probiotics (eg vsl3) maybe worth discussing with your doc
No doctor is going to say go diet only for a 12 year old losing weight on humira and if they did they would be reckless. Priority one is get the inflammation under control. Whether he can wean off down the line is another matter.
Best wishes with it all

Thank you for your kind wishes. I hear you - I really do wish and pray that EEN can be "instead of". But I get what all you guys are saying.. he needs to be at a much better place, gaining weight, thriving..... before we can even try something new. Med sounds like the only hope right now. *tears*

 

[my little penguin]

@asadmom
Een is formula ONLY -no SOLID FOOD
It’s fine instead of steriods to induce remission
That is why it’s not “instead of “ maintenance meds
No teen is willing to give up all solid food- long term
Doing it for 6 to 8 weeks is difficult enough
Teenagers are a different beast
They are independent- get a say in medical decisions and will eat on their own without you around
So een long term is not an option with a teen
Short term is different
We bribed Ds heavily at age 7
He didn’t realize he could say no
At 12 we could only get him to agree to 2 weeks
And Gi was ok with that since he just needed a “boost “ at the time

 

[asadmom]

@asadmom
Een is formula ONLY -no SOLID FOOD
That is why it’s not “instead of “
No teen is willing to give up all solid food
Doing it for 6 to 8 weeks is difficult enough
Teenagers are a different beast
They are independent- get a say in medical decisions and will eat on their own without you around
So een long term is not an option with a teen
Short term is different
We bribed Ds heavily at age 7
He didn’t realize he could say no
At 12 we could only get him to agree to 2 weeks
And Gi was ok with that since he just needed a “boost “ at the time

Thanks!

Yeah I was exploring the option of doing EEN instead of Humira (at least in the beginning...) but it sounds like it should be EEN + Humira (or some type of med).

 

[Pangolin]

Hi @Pangolin, you mean the idea of switching too slowly? Sorry I am not quite sure... you mean when the med or diet is not helping?

There are a couple of ways this can go wrong:

1. Sticking with something that may or may not be working but certainly isn't working well enough out of fear that changing strategies could make things worse.

2. Putting up with too many side effects on a semi-effective drug.

Anyway, you always want to make sure things are moving in the direction of mucosal healing (seen on colonoscopy) and intestinal wall thickness normalization (seen on MRI), and if things aren't moving in that direction you need to keep changing things.

 

[Pangolin]

Thanks!

Yeah I was exploring the option of doing EEN instead of Humira (at least in the beginning...) but it sounds like it should be EEN + Humira (or some type of med).

We had to do EEN to keep things under control for over a year while on Remicade because the Remicade was not very helpful (and may have been making things worse). If we had dropped EEN during that time I think he would have been in the hospital facing major surgery within a matter of weeks. As far as I can tell, the Remicade actually made EEN more critical for keeping things under control in my son's case, although that could be coincidental. Eventually we got him off the Remicade, but we found out that EEN alone wasn't enough and EEN with Entyvio was also not enough.

Surgery to remove a fairly small part of intestine did make a big difference, and I suspect that the status of that part was bad enough that no medicines would have been substantially effective until after the surgery. He's on Stelara now and doing well, and only some of his diet is formula now. EEN was necessary to stave off disaster until we got this all figured out.

 

[asadmom]

We had to do EEN to keep things under control for over a year while on Remicade because the Remicade was not very helpful (and may have been making things worse). If we had dropped EEN during that time I think he would have been in the hospital facing major surgery within a matter of weeks. As far as I can tell, the Remicade actually made EEN more critical for keeping things under control in my son's case, although that could be coincidental. Eventually we got him off the Remicade, but we found out that EEN alone wasn't enough and EEN with Entyvio was also not enough.

Surgery to remove a fairly small part of intestine did make a big difference, and I suspect that the status of that part was bad enough that no medicines would have been substantially effective until after the surgery. He's on Stelara now and doing well, and only some of his diet is formula now. EEN was necessary to stave off disaster until we got this all figured out.

Thank you for sharing your story. You are in my prayers. (I was being too hopeful and optimistic... also in denial)

I was reading up on Stelara... it looks similar to Humira, right?

 

[asadmom]

Thank you for sharing your story. You are in my prayers. (I was being too hopeful and optimistic... also in denial)

I was reading up on Stelara... it looks similar to Humira, right?

I should ask a further question, was the order of preference Remcade > Stelara > Stelara?

 

[Pangolin]

We've tried Remicade, Entyvio, and then Stelara. Humira is similar to Remicade in that they're both biologics that block TNF. Entyvio blocks a different pathway, and Stelara blocks yet another.

We noticed the best results with Stelara, and no noticeable side effects so far. Entyvio had low side effects but at that time didn't seem to help that much. Remicade had higher side effects.

 

[asadmom]

Are you guys familiar with the Yellowstone study? https://www.crohnsstudies.com/home/new-clinical-trials/crohns-disease-clinical-study-questions/

Was reading about it and just wondering if anyone has participated in a trial before?

 

[Pangolin]

A well-run trial of a promising drug can definitely be worth it. However, that study is for 18+ only, and I don't know anything about Ozanimod and Crohn's.

 

[crohnsinct]

Just my opinion but if you are Med hesitant why take a chance on an investigational drug with no proven track record and no complete safety data?

My girls have not participated in a trial before. O never qualifies because of either her previous biologic use, steroid use or recent hospitalizations. We have been able to get investigation drugs off label or used approved drugs at investigational doses off label.
Both girls however have been in numerous studies.

 

[Scipio]

I was reading up on Stelara... it looks similar to Humira, right?

Stelara is similar to Humira in that they are both monoclonal antibodies that tamp down the immune system. But they do it by quite different mechanisms. They both bind cytokines - proteins the body produces to stimulate various cells in the immune system, but they bind different cytokines. Humira blocks Tumor Necrosis Factor (TNF) and Stelara blocks a subunit that is common to both IL-12 and IL-23, but IL-23 is the one important for stopping Crohn's inflammation. So different immune cells are affected by the different drugs but with the same goal - to decrease the Crohn's inflammation.

Humia is very similar to Remicade. They both bind to and block TNF.

 

[asadmom]

Thank you. I will bring it up with the doc tomorrow.

Was thinking about the focus on the bacteria you mentioned and came across this article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5452177/

 

[crohnsinct]

Yes, they do you diet and even antibiotic therapy at Stanford to help rebalance the gut microbiome. But just as in medicines, there is no guarantee any specific therapy will be successful.

The thing that makes dealing with IBD difficult is you just don't know what the driving force is in each patient. For some it is the tnf, others the IL23 and some believe it is bacteria or some combination of all three. Once they develop a way to figure out what is driving each person's inflammation, they will be able to target drug therapy better but until then…..

 

[crohnsinct]

Also wanted to add you really need to know more about what the Humira levels and antibodies are. It could be that he is just metabolizing the drug too quickly and doesn't have enough in his system. Also, take a look at the calpro and inflammation markers. If they are significantly improving ands symptoms are improving then perhaps Humira is doing it's thing. As was suggested before, I would start keeping a detailed record of everything he is eating in a day complete with measurements so if it is determined that the Humira is working on disease activity and weight is more related to intake, you have a good starting point on which to improve. From my experience, keeping a food log is the first thing the dietician will ask for and if you have it going in, you will be that much more ahead of the game.

 

[my little penguin]

Try an app like my fitness pal
You can put in that you want to gain weight (as an adult ) but just scan his food , use his weight and height
Then you have something to give the dietitian
We found even at 2600 calories a day Ds was not gaining prior to the right crohns treatment

 

[asadmom]

Try an app like my fitness pal
You can put in that you want to gain weight (as an adult ) but just scan his food , use his weight and height
Then you have something to give the dietitian
We found even at 2600 calories a day Ds was not gaining prior to the right crohns treatment

That's a great idea! Was 2600 cal enough to gain weight after the med?

 

[my little penguin]

My kiddo is 18 now
He has gained 109 lbs and grown over a foot in 11 years since dx (159 lbs at 5’11”)
He still drinks supplemental shakes (2-3 boost a day ) plus food
Once he started remicade at age 8 he was still on peptamen jr (2-3 a day )plus food and started gaining weight .

the gut has to heal
Inflammation requires a ton of calories

 

[asadmom]

My kiddo is 18 now
He has gained 109 lbs and grown over a foot in 11 years since dx (159 lbs at 5’11”)
He still drinks supplemental shakes (2-3 boost a day ) plus food
Once he started remicade at age 8 he was still on peptamen jr (2-3 a day )plus food and started gaining weight .

the gut has to heal
Inflammation requires a ton of calories

Thanks for the product information. That's a very interesting idea - I didn't even consider nutritional drinks because it's not scd legal.

With so many brands out there, how did you narrow it down to Peptamen Jr?

 

[my little penguin]

There were a lot less brands 11 years ago
Gi gave Ds a bag full of samples and told him to pick one for een . Said he needed to drink it for 8 weeks
Just like infants -Gi said to start with the worst tasting one (elemental formula elecare jr /neocate splash ) and move to semi elemental (peptamen jr)

Ds cried with each sip out of the straw but drank one 8 oz shake peptamen jr after 2 hours
Within a week he could chug two 8 oz shakes in 20 minutes with choc syrup

he did een for 9 weeks while waiting for 6-mp to kick in
Caused liver enzymes to rise
So after 3 months moved to methotrexate
That made him sick and wasn’t enough for the inflammation (vasculitus showed up in his legs and feet anytime we lowered steriods )
One year after dx at age 8 he started remicade and hasn’t looked back .
He never did scd diet (not recommended for kids by most big hospitals including children of Philadelphia can causes too much weight loss ) and Ds has life threatening food allergies to fish /all tree nuts so not worth it.
He did cced which also did nothing

 

[asadmom]

Wanted to share this with you guys: https://ibstim.com/

 

[Delta_hippo]

Just a word of warning (and I know you would rather hear good news), the big issue with Crohn’s is the inflammation rather than pain because it is uncontrolled inflammation that leads to the real problems and the nasty risks. I have heard stories of folk finding things like cbd oil that make them feel better and then getting bitten down the line with emergency surgery because the cbd had stopped the pain but hadn’t stopped the inflammation progressing. So whatever path you and the docs follow, keep an eye on the numbers and do them regularly and I mean the blood tests (looking at CRP which needs to be below 5) and stool test (fecal calprotectin where you want less than 50 but my GI says in adult Crohn’s he’ll take anything under 200).
I know it’s been painful even thinking about looking at the numbers- when you can bear to it is important and to log them so you can see if the humira is starting to do anything and then assess the benefit of whatever you do next (diet, add drug, change drug etc).
My advice is deal with it a day at a time. Who knows what tomorrow will bring. They are trialling a vaccine in London at the moment which could be a game changer or a total damp squib. So there is no pint planning and worrying ahead because the options then we don’t know what they will be. Focus on today - what can I do now to give my body the best chance of fighting this wretched thing and how can I make the best of the day given my energy levels/ symptoms.
We are all rooting for you and no question is silly and I have certainly been there with the read something on the Internet that sounded much nicer than meds (Wild oregano oil in my case) then had to go back to the doctor a few weeks later with off the charts inflammation levels because surprise surprise dr google knows sod all.

 

[my little penguin]

There is a big difference between “functional abdominal pain” - ibs where no damage is being done and inflammatory bowel disease -IBD where damage is being done (which causes pain)
You need to treat the inflammation which stops the pain
Stopping the pain does not stop the inflammation.
There are a lot of non invasive ibs treatments which stop pain
But ibs is completely different from ibd
Your child needs ibd treatments to address the inflammation
Once the inflammation is under control the pain slowly goes away as well.

 

[asadmom]

This post (and some offline convo) absolutely changed my perspective on this "thing" (I do not ever say its name anymore. it makes me rage). I really want to thank you, all of you, for your honest feedback and also want to say sorry for making you have to convince/educate me on what the right thing to do is (or rather the less drastic or radical thing) or worry about my state of mind. Two days ago it was a 4rd opinion from a doctor at Stanford and he was able to explain our situation in a way (for some reason) that our first doc was not able to. We will stay on Humira and we will supplement him with nutritional drinks (thank you @my little penguin) tho they are not scd legal however that's not important at this time.

While this doc was rehashing our situation and also was trying to "convince" me, all your words surfaced and helped me actually digest what he was recommending and asking and I saw myself aligned with him and you guys. He knew how much I wanted to be off of the med but he said he would only allow it if my son could achieve deep remission and even then it would require a lot of prayers for the any diet therapy to work. Then I got it - we will be on med for life, the same thing that our first doc said to us during our first visit. No one beats this, not scd, not een. It's progressive and it just is.

I found sometime to grieve and express gratitude for identifying his problem early - then felt a sense of relief and had a good Saturday.

This is my latest update I am so glad you guys are here checkmating me before I go completely insane.

 

[crohnsinct]

I am so happy to hear that you are feeling better about things. Don't make this your last update! Keep us posted. We love to hear success stories and are always available to catch you when things fall.

I am curious which doc you saw, PM me his name and also did you get the email about the IBD Parents group at Stanford? If not I will send it to you. It came from the Social Worker. They are just starting it up and I think you could really get a lot out of it.

 

[worried_mom]

Our leading GI doc is from Stanford Children hospital and with her 25 years of experience I guess I do need to believe her when she said "he will be on Humira for life", "Crohn's is an autoimmune problem" and "no diet will fix Crohn's". She along with other physicians have been handing me what feels like a death sentence for a while now. If I am being rational (and I have to be) I just cry and nod.

He gets the 40mg needle every two weeks and has skin reaction (where the injection site swells) every time. I have his stool results and I don't have the stomach to look at them right now because I know they will be flagged all over.

Question on EEN... why is it EEN can fix Crohn's? Is it because we are starving the bacteria?

Thank you all for replying. I really appreciate thoughts and experiences from people other than physicians, at this time.

 

[worried_mom]

Because allopathy doctors don't have much idea about Nutrition/Diet therapy. They don't study much about Nutrition during their medical degrees. A doctor told me Diet has nothing to do with Chron's. Believe me Diet has everything to do with body. If malnourishment causes disease, correct food cures also. But a lot of research is not done on this, and every person is different with food preferences too. Though we have so many degrees we are just layman in front of the medical doctors. Diet reverses heart diseases too itseems. ( book written by famous cardiologist Dr. Caldwell Esselstyn). lots of health and good vibes to all.

 

[asadmom]

Because allopathy doctors don't have much idea about Nutrition/Diet therapy. They don't study much about Nutrition during their medical degrees. A doctor told me Diet has nothing to do with Chron's. Believe me Diet has everything to do with body. If malnourishment causes disease, correct food cures also. But a lot of research is not done on this, and every person is different with food preferences too. Though we have so many degrees we are just layman in front of the medical doctors. Diet reverses heart diseases too itseems. ( book written by famous cardiologist Dr. Caldwell Esselstyn). lots of health and good vibes to all.

I agree with you 100%. 1000%.

It's hard to believe it's been five months since I made this post. It was a very dark phase indeed. I could not have made it without all the mentors on this forum. There is still so much to learn.

Yes, our doctors expressed the same sentiment. "Get the injection then eat whatever you want."

Diet and lifestyle/environment factors absolutely play a role in this tragic state. Just because we don't know how exactly down to the precise detail it doesn't mean diets should be discounted. We, as a family, now are on a much healthier diet all thanks for our (poor) son.

His tests are now normal. Normal MRE, normal capsule endo. What is next? What is the next thing we should spend our energy on? The doctors think forever-Humira (until it fails) is how we should spend our energy. I will gladly support this treatment plan if Humira is without side effects. Sadly, we live in a reality where these biologics are not without harm.

 

[crohnsinct]

I have always been the diet proponent on the forum. My daughters have been seen by leading functional medicine docs as well as leading pediatrician now adult GI's for 10+ years. I can tell you without a doubt that there is MUCH research in the diet realm. EVERY GI we have seen has used some form of diet therapy in the management of our daughter's disease. Conversely, every functional medicine physician we have seen has told us point blank that while diet can reverse heart disease, diabetes, and even some form of cancers that they have not had the same success with IBD and that for now pharmaceutical options were necessary. This is not to say that we should throw in the towel. We have used diet as one of the many portions of my daughters' treatments but they have not yet been able to identify a diet that is reliably successful for enough patients that they are ready to use it as the primary source of treatment. However, just because they haven't found it does not mean that they have stopped trying. MANY of the presentations at DDW this year were focused on the microbiome, diet, and the precursor to IBD. CCFA sponsors major diet therapy studies. Improve Care Now is allo a sponsor of diet studies.

What turns on the IBD gene is just not known yet. It is some combination of genetics, environment and microbiome. The fact that I have three daughters who I fed the exact same thing and who lived in the same house and only two got Crohn's speaks to the fact that it can not be diet alone. There are many other parents here who have multiple children and only one or some of their kids have Crohns and not the others.

The three pediatric GI's we have seen have had us try IBD Aid, CDED and SCD. None of which worked for either of my girls. We finally landed on simply a Whole Foods plant based diet which also has not eliminated the inflammation for my girls but we keep it to help combat any of the potential side effects (liver, blood clots, lipid levels etc) of the meds.

All this to say that while it is true that physicians do not get a good nutritional education in med school, many of them understand and acknowledge the importance of diet and have dedicated register dietician on staff to help approach all aspects of the disease. They do care and are looking at diet. If you are at a center that is not at least considering some part of the role diet plays in overall health, then I would look for another center.

While these meds have side effects, please keep in mind that diet also could have side effects. While on SCD my daughter's cholesterol went through the roof which the registered dietician told us was a documented side effect of the diet. It was also difficult for her to gain weight on the diet and the lack of weight gain let inflammation take hold and then the vicious cycle. There "could" be a psychological toll that diet takes on a person as well. All of the diet therapies require that you be strict, strict, strict. While on SCD, we could not buy anything prepared outside the house, this included spices, supplements, medicines etc unless we grilled the company as to fillers, anti caking agents etc that they may have used. Our daughter could not eat freely at restaurants and such because of these reasons and this could be socially isolating. She was definitely willing to do this if it meant she was treating her disease but it is difficult. Super market shopping took me hours as did finding recipes for things that were diet compliant. Again, perfectly willing to do this but it does get exhausting.

I wish there was a perfect answer. I just wanted to hop on and say docs do know that diet matters even if it won't treat disease totally on it's own and researchers are researching it. I think you will be surprised to see what is downtime pike.

 

[my little penguin]

https://www.improvecarenow.org/icn_...ce&utm_medium=email&utm_source=improvecarenow