Newly diagnosed (16 years old) boy

[Majka]

Hi, I am a (desperate) mom of a 16 years old boy from Australia.

He has been recently diagnosed with ileitis/Crohn`s disease.

In March 2019 he has severe stomach pain which resolved after taking 2 Neurofen tablets.

In September again stomach pain, took him to Emergency. They suspected appendicitis and he spent a few days in hospital. That`s when they told him an ultrasound showed some ileum inflammation that might be Crohn`s.

He had no gas, bloating, pain, diarrhea and we thought it was impossible to have Crohn`s.

His colonoscopy showed 5 cm small intestine inflammation, and biopsy revealed mild acute and chronic changes unspecific to Crohn`s which might be due to very early stage of the disease or because of medication use.

We refused to accept Crohn`s diagnosis and went to Europe to our home country to seek a second opinion. Again, we were told it was very likely Crohn`s.

In January we saw a doctor in Australia who prescribed him some steroids for this acute phase (3 months of therapy).

The doctor proposed to do another colonoscopy in May as well as some other scans and biopsy to definitely confirm (we hope to exclude) Crohn`s.

As my son was taking Neurofens which are anti-inflammatory medications, there is a very small chance that his inflammation is medication induced and that it will resolve with steroids.

The doctor also said that being so young doesn`t go in his favour as the disease is usually more aggressive when diagnosed at early age. The good thing was that the inflammation was mild and didn`t go deeper into intestine wall.

Psychologically, since he was told he has Crohn`s he has stomach pain whenever he gets stressed. He is in Year 12, and stress is everywhere.

In case it is Crohn`s, I am very confused and worried about future treatment.

I have read here that Entyvio is not that efficient for Crohn`s.

The doctor wants to put him on Entyvio as it has the least side-affects and targets only the bowels.

I know some people opt not to have long-term medications but the doctor warned us that in 12 months since diagnosed, 50% of patients have to have surgery if they weren`t on medications.

Any advice/opinion would be appreciated.

 

[my little penguin]

hugs
Ds was dx at 7 -now is 16
No diarrhea but still has crohns
NSAIDs can cause inflammation in some
Giving steriods will reduce Inflammation
But it doesn’t distinguish where the inflammation came from
So if the inflammation is from crohns the steriods will calm it down and scopes /imaging will be clean
If the inflammation is from nsaids the inflammation will go down and scopes /imaging will be clean

so while steriods will reduce the inflammation it won’t tell you why he is inflamed

second thing if it is crohns
Odds are it will come back again
Biopsy results will state Crohn’s disease from pathologist if there is non caseating granulomas found (which are only found in 30% of crohns patients ) -otherwise pathologist tend to suggest crohns is likely

bloodwork -crp /esr etc... normal or elevated ??
fecal caloprotectin elevated ??

if a Gi suspects inflammation from nsaids
Typically they stop the nsaids for 6-9 weeks and then rescope - but they don’t reduce the inflammation woth steriods

but since you had three opinions all state crohns
Odds are it’s crohns
In crohns in kids - they present differently than adults
The surgery rate is 75% will have surgery within 5 years of dx with traditional meds 5-asa and immunosuppressants

that said a lot of kids on here have had the disease over 5 years and not had surgery

biologics remicade /humira /Stelara /entyvio
ALL suppress the immune system
And all have risks associated with them
Remicade has the highest success rate since it’s been around the longest
Entyvio works well on the large intestine colon
Stelara works well on the small bowel
Remicade and humira on both

remicade takes 6-8 weeks to be effective
Humira takes 3-4 months
Entyvio take 6-12 months
Stelara takes 6-8 months

while you wait for the drug to be effective your child will have to stay on bridge therapy of steriods
otherwise the inflammation can get worse
You can use Een ( exclusive enteral nutrition) formula only until the biologics kick in
But getting a teen to not eat any solids is very hard
Ds did it when he was tiny but as he got older much much harder

I can say for ds at least remicade /humira and Stelara all worked

this was from 3rd grade till 10th grade no extra issues from colds or anything
He currently takes Stelara and has for 2.5 years now

We took Ds to three different Gi since he didn’t present with typical crohns
But the docs all say the same

it’s tough but you can adjust and move forward

the important thing to learn is there is no right path or drug
You can research a drug and work to be one ok with the risks only to have that drug not working for your kiddo and the one you vowed wouldn’t be the right thing for your kid actual work

you do the best you can with the info you have and cross your fingers your find a drug that calms the Indians keeps your child’s intestines back to pink /healthy with no disease

these kids will have a inflammatory disease for 70-80 years . Their disease tends to spread and change in kids the first 10 years after dx
So it can start as inflammation only
Then turn to strictures /fistulas/obstructions if it not under control

wish you didn’t need to join

 

[Majka]

Thank you for your reply. This is so very difficult to take in, and I wish all the kids were disease free.
The way our doctor explained it, if it was medication related then the biopsy will show no chronic changes. If it`s Crohn`s then it will.
He also said that there are new medications coming out and that there is no need to be worried as it`s will be well managed.
You said our kids would have to be on thereapy for 70-80 years (at least at the moment there is no cure).
My worry is the side effects, will they have some consequences or develop other diseases due to medications
The only good thing is that technologies are being used to better understand diseases and there is a huge possibility a cure/some perfect drug will develop in near future.

 

[my little penguin]

I can tell you steriods can heal all the changes on the biopsy results chronic and acute
Ds had both at dx (prior to steriods )
Second scope at 8 months of disease - small doses of steriods (6 weeks) just imuran/Een - acute iletis still present -no chronic changes
the third scope (1 year of disease ) after months of steriods /mtx/remicade -pink intestines no chronic or acute changes found

side effects are potential side effects
Yes risk is there but you take risks every single day for kids to improve quality of life - no one points them out

Tylenol in theUS is given to infants
But has a risk of side effects of Steven Johnson’s syndrome /liver failure /death
The benefit of fever reduction out weighs the minimal risk
Same with these meds

kids and adults with autoimmune disorders tend to develop other autoimmune disorders
This happens due to the genetics involved not the drugs taken
So for crohns that means -psoriasis/arthritis are the two big ones
Some also have celiac
But other autoimmune disorders not so much

when Ds was first dx our Gi at the time did not give Ds steriods at first because he knew we were getting second opinion
He stated that steriods would muddy the waters and make it very hard to get a true second opinion dx since steriods magically fix too many diseases and disorders - they don’t differentiate the cause

after the second opinion Ds started steriods for 6 weeks plus imuran

 

[Jo-mom]

Welcome to the forum. It's a great source of info. My Little Penguin couldn't have said it better. My son also didn't display many symptoms through his teens and only because obvioius symptoms of arthritis came through first, did we learn he had crohn's all along. It didn't present itself in any big way but did cause arthritis, and then the crohn's did get worse. He was 19 when diagnosed but must have had it for years. I was afraid of biologics but through research and knowing that this was the best thing, my son is on remicade and at a high dose. It's 18 months later, and he looks like a different person - gained 19 kilos (40 lbs) he can walk and move well. He was 49 kilos (109 lbs) at 5'8".

Things will get better. This is a good place for questions. And it's good to catch this earlier than later.

 

[Majka]

Welcome to the forum. It's a great source of info. My Little Penguin couldn't have said it better. My son also didn't display many symptoms through his teens and only because obvioius symptoms of arthritis came through first, did we learn he had crohn's all along. It didn't present itself in any big way but did cause arthritis, and then the crohn's did get worse. He was 19 when diagnosed but must have had it for years. I was afraid of biologics but through research and knowing that this was the best thing, my son is on remicade and at a high dose. It's 18 months later, and he looks like a different person - gained 19 kilos (40 lbs) he can walk and move well. He was 49 kilos (109 lbs) at 5'8".

Things will get better. This is a good place for questions. And it's good to catch this earlier than later.

Yes, I agree. As much as I hope it`s not Crohn`s, the doctors are doing a very good job of detecting it.
Like, we went to a public hospital, we don`t have any private health insurance, he got premium care and investigations.
They could have just dismissed him and that would be it. If they are right then good on them for being spot on.
When I read posts about costs involved in USA, I am so grateful to be living in Australia.

There is one thing I am very hopeful about, the Gut Cell Atlas and the research to find a cure for Crohn`s. I have posted about it in more detail in News and Research.

 

[crohnsinct]

Welcome although I am sorry you find a need to be here.

If it is Crohn's you are very lucky to be finding it so early as it is mild and confined to such a small area. True, that disease in young people tends to be more aggressive but if you catch it and treat it appropriately there is no reason to believe that he can't have a perfectly normal and productive life. I have two daughters with Crohn's. One is mild in the ileum (like your son) and the other has severe refractory disease. Both girls had great high school years academically, socially, athletically and did loads of community service. My one daughter is in her third year of college and has been in a refractory flare the whole time but still maintains her grades and swims on the club swim team.

As for choice of medicine, your first choice of biologic has the best shot at working. After that, the chances decrease. So if a drug's typical success rate is say 50%, if it is the second biologic you try then the shot at success goes down to 30-40%. So I would caution you to choose the first drug carefully. Remicade has the longest history and highest success rate of any of the biologics. Humira (same class) is a close second. True they are more systemically absorbed and leave you a little more susceptible to infection than Entyvio but they work faster, we know more about them and they have a higher success rate than Entyvio. Entyvio success rate, especially in the TI, is lower but if you use it as a first line then maybe you are giving it the best shot it has to work.

My girls have combined 13 years on Remicade and they have not had any complications from it. Quite the opposite, they are the heaviest people in our family. They have been in close contact with the flu and mono many times and they never caught either. The only thing that happened was they both developed psoriasis which may or may not have been caused by the drug.

The important thing is if it is Crohn's that you treat it. No decision will be wrong. Honestly, I have never heard anyone here say they wish they never took the drugs. The risks are only slight possibilities. The risk of untreated disease is a certainty.

My older daughter (the one with severe refractory disease) is on Entyvio now. It took a long time to kick in but IDK if she is a good example.

Good luck with scopes. Keep us posted.

 

[Pangolin]

You really want the inflammation to go away, and steroids are not a long-term solution. An all-formula diet (called EEN here) is very effective at reducing inflammation. Entyvio is an effective drug that has less immune suppression and fewer side-effects than your other options. It's a good first step.

 

[Tesscorm]

Hi Majka, welcome to the forum but also sorry that you had the need to find us.

My son was diagnosed when he was 16 as well. Everyone is different but we have been very lucky in that he's responded well to his treatment and has been stable since diagnosis.

His initial treatment was one week on IV flagyl (antibiotic) and 6 weeks of exclusive enteral nutrition (EEN) (diet of nutritional formula only - no other food). After the six weeks, he did partial/supplemental EN - added back a regular diet (after reintro of food) and continued with half the dose of the nutritional formula for the next 1.5-2 years. He also took Nexium.

All his symptoms disappeared. However, MRIs continued to show some inflammation.

Upon transferring to an adult GI, the new GI was not comfortable leaving simmering inflammation and did not believe the supplemental EN was enough to treat his crohns; GI started my son on remicade. It's now been approx. 7 years that he's been on remicade.

His crohns has been under control since then... some twinges here and there but nothing really to worry about.

He has had a number of other infections... respiratory, skin rashes, other weird things are end up being only 'quasi' diagnosed before symptoms just go away... But, everything has resolved.

When my was diagnosed, I was terrified of what his future held. My aunt had crohns and she'd had a terrible time of it! That was all I knew and assumed my son was headed to that. I couldn't have been more wrong. Crohns affects each person differently. Where the inflammation is located, how it progresses, condition when diagnosed, how the person reacts to treatment, etc.

Since my son was diagnosed, he's graduated high school, completed a demanding degree in university, played competitive hockey on two teams until 18 years old, continued playing recreational hockey until now, he's travelled with friends, he's had injuries and surgeries (shoulder and jaw) unrelated to crohns and has recovered from both very well. He's started working and has moved into an apartment with friends. Crohns has not held him back.

Aside from the schedule of infusions, the biggest inconvenience is the number of dr apptmts because it does seem he is prone to 'weird' symptoms and injuries (definitely he keeps me on the edge of my seat!). But, from my perspective, while these are inconveniences, they are manageable.

I haven't offered any real advice because you've already received great advice from the best here. But, I did want to reassure you that things likely won't be as bad as you fear... try to take it one day at a time. Do learn all about crohns, I found this helped me immensely! And do come for support and advice - I wouldn't have made it through the first year or so without the support and help I received here.

I hope things go smoothly for your son!!

 

[Catherine]

Sorry you had to find us.

I am also from Australia my daughter was dx with Crohn's aged 16.

My daughter is now 24 and for the most part doing well. Crohn's is a part of her live and it doesn't control her life.

I do wish treatments will like Entyvio were available to her when she was dx.

She also had no bowel symptoms and her ultrasound also show what could be IBD in the small bowel.

 

[Majka]

Thank you so much for sharing your experiences.

As my son is 16, he is treated like an adult and has to go to hospitals/doctors for adults.

I am also worried what the future will bring. Will the disease be mild, or severe etc. He is in Year 12 now, very stressful and wants to go to Medicine.
Yesterday he had diarrhea and stomack pain, I was devastaded.

I know this is not about me, but I get blown away when he is even slightly unwell. In my culture (I am East European) we tend to experience things more catastrophic and tragic than some other cultures. Like, I was unable to speak for hours after being told the diagnosis, and for days I was on automatic pilot, totally overwhelmed. I remember the doctor telling me it was Chron`s and that I have nothing to worry about and me looking at him with anger and telling him Chron`s was s***.

My son told me after our latest doctor`s appointment that the doctor was too scared of me as I was unwilling to accept this diagnosis and kept asking what if questions.

To me, and I am a newbie, Entyvio sounds like a good option as it doesn`t suppress the whole immune system, "just" the intestine immune response. I thank God that we moved to Australia because they have a great public health system.

In our home country they provide Entyvio only to severe cases in theory. In reality they don`t provide it at all as it`s too expensive.
I do hope they find a cure or at least some great medications for this disease soon.

 

[Jo-mom]

Hi Majka, as parents here we all have felt overwhelmed at some point because of this disease, however, it will get better. Once you understand it more and see good results of medications/diet/etc., you will slowly realize that things can be normal and will be normal for your son. I have learned a lot by reading through the different threads on this forum and it is really helpful.

 

[kiny]

I have read here that Entyvio is not that efficient for Crohn`s.

Any advice/opinion would be appreciated.

There is zero reason why anyone with crohn's should be on Entyvio unless all other options are exhausted. It is highly ineffective to treat crohn's disease.

Prescribing Entyvio as a first-line treatment is highly unusual.

You say you went to Europe and Australia. Treatment and research is much more advanced in Europe. People like Rutgeerts have laid the groundwork for a lot of things we now understand about crohn's. I would find another doctor, preferably in Western Europe if you have the choice.

The doctor proposed to do another colonoscopy in May as well as some other scans and biopsy to definitely confirm (we hope to exclude) Crohn`s.

It should require one colonscopy with biopsies to look for crypt abnormalities, crypt abscesses, granuloma and stain the biopsies. It shouldn't require multiple coloscopies to get a correct diagnosis.

 

[kiny]

I know some people opt not to have long-term medications but the doctor warned us that in 12 months since diagnosed, 50% of patients have to have surgery if they weren`t on medications.

Surgery does not cure, it should be -at all cost- avoided.

In the late 1980s, European doctors, including Rutgeerts, were the first ones to push back on the overuse of surgeries on crohn's disease patients in other parts of the world. The disease simply moved to a perviously unaffected area in those patients.

There is a reason it's called Rutgeerts score, we know disease simply comes back thanks to Rutgeerts his extensive studies.

To cut is not to cure. Rutgeerts, 1985. Save the bowel at all cost.

 

[Crohn2357]

To cut is not to cure. Rutgeerts, 1985

https://www.gastrojournal.org/article/0016-5085(85)90042-3/pdf

 

[Crohn2357]

Rutgeerts score

https://www.igibdscores.it/en/info-rutgeerts.html

 

[Pangolin]

There is zero reason why anyone with crohn's should be on Entyvio unless all other options are exhausted. It is highly ineffective to treat crohn's disease.

Kiny, I've seen Entyvio work. In particular, after each of the second and third doses there was a rapid and unquestionable reduction in pain and reduction of stool frequency and liquidity. I'm very sure this symptom reduction was from the Entyvio.

That said, it is possible that Entyvio is acting much like an anti-diarrheal and merely reducing symptoms while not affecting the underlying course of the disease. However, studies have found some mucosal healing and bowel wall thickness normalization associated with Entyvio, so it appears to be providing some benefit in that way. It also appears to have a better safety profile than the other biologics.

I'm not saying it's definitely superior to other options, but it does seem to be at least competitive with the other biologics.

 

[Majka]

Kiny, I've seen Entyvio work. In particular, after each of the second and third doses there was a rapid and unquestionable reduction in pain and reduction of stool frequency and liquidity. I'm very sure this symptom reduction was from the Entyvio.

That said, it is possible that Entyvio is acting much like an anti-diarrheal and merely reducing symptoms while not affecting the underlying course of the disease. However, studies have found some mucosal healing and bowel wall thickness normalization associated with Entyvio, so it appears to be providing some benefit in that way. It also appears to have a better safety profile than the other biologics.

I'm not saying it's definitely superior to other options, but it does seem to be at least competitive with the other biologics.

I am very reluctant to let him be on bilogics that suppress the whole immune response. The key fact for me was that Entvio targets only intestine, not the whole body.
He is looked after by a team of doctors in a prestigeous university hospital , where they even have IBD research in place. If there is a place in Western Australia where anyone can get the best possible IBD care, his hospital is it.
They seem to have a number of young people who started on Entyvio as their first therapy and had great results, that`s why they want him on that medication. Maybe Entvyio performed well with young newly disgnosed patients, who knows. It`s been in use for more than 5 years in Australia and in most parts of the worls, so it`s reasonable to assume that it works very well in young newly disgnosed patients. At least I hope so.

 

[kiny]

I am very reluctant to let him be on bilogics that suppress the whole immune response. The key fact for me was that Entvio targets only intestine, not the whole body.

I think some info about Vedoluzimab seems to be knowingly or unknowingly left out by doctors claiming Entyvio is safer than other medication.

Entyvio is a continuation of a medication that was called Tysabri. Tysabri was taken off the market because it resulted in the deaths of several crohn's disease patients in Canadian trials.

The medication was reworked, that medicaiton is now called Entyvio.

When Entyvio came out, many doctors opposed it, due to the death that occured in crohn's disease patients with Tysabri.

Many doctors, mostly from European hospitals, have tried to veto the use of Entyvio because they do not consider it to be safe medication. https://academic.oup.com/ibdjournal/article/16/3/537/4628374 .

Many doctors still oppose Entyvio because of the lack of effectivness and because it is based on a medication that resulted in the deaths of crohn's disease patients in trials.

Entyvio has doctor support in some parts of the world, but in other parts of the world caution and lack of effectivness in trials, means it has little to not support, with some opposing its use.

If one talks about Entyvio's claimed safety, one should also add the facts that Entyvio's close cousin, Tysabri, caused more deaths in crohn's disease patients in trials than any other medication.

 

[kiny]

I'll just say this. Consider. If the goal is exposing the patient to the least amount of risk, then one should consider using medication that has shown to be effective at getting the patient in remission, not medication that has had a very questionable track record.

Because the risk of uncontrolled disease is far greater than the potential risk of medication.

 

[Majka]

I'll just say this. Consider. If the goal is exposing the patient to the least amount of risk, then one should consider using medication that has shown to be effective at getting the patient in remission, not medication that has had a very questionable track record.

Because the risk of uncontrolled disease is far greater than the potential risk of medication.

He is 16. What is the health/life expectancy of patients who have been suppressing their whole immune systems for 10/20/30 years ?I know Entyvio is not risk free, but so far it has been the only medication to suppress just one (target) area instead of the whole body.
In Australia, it`s considered to be the least harmful medication and it`s first line of defense against Chrons.
I am not comfortable agreeing to any long term medication, but I will have to say yes because the risk of leaving it untreated is too much to handle. To me, the whole option of choosing the long-term therapy is something in line with "pick your poison". Let`s hope that in near future there will be some less harmful and more efficient medications.

 

[my little penguin]

The thing to remember is although theses meds are “for life” most kids don’t stay in them for life .
A few squeak out 5-10 years on one med(biologic ) if they are very lucky
Most don’t get more than 2-7 years
Kids immune systems are constantly changing so when you block one pathway of inflammation
It takes a awhile but finds another path
Add in new meds are in the pipeline
Not saying not to try entyvio but realize the odds of being on that med “long term -“more than 10 years is slim

The important thing is finding a med that stops inflammation for your kid
Period
Safety profiles are great
Effectiveness numbers are wonderful
But if it doesn’t work for your kid it doesn’t help
Every kid on here is different

We all “picked” the perfect med with our docs
And sometimes that worked for a while and other times we had to move on to something else we didn’t think was as good only to find for that kid it was the best option

Ds has been on 5 biologics so far (three for crohns )
In 9 years

So fingers crossed it works
It takes 12 months or more to start working so
Goid luck

 

[Majka]

The thing to remember is although theses meds are “for life” most kids don’t stay in them for life .
A few squeak out 5-10 years on one med(biologic ) if they are very lucky
Most don’t get more than 2-7 years
Kids immune systems are constantly changing so when you block one pathway of inflammation
It takes a awhile but finds another path
Add in new meds are in the pipeline
Not saying not to try entyvio but realize the odds of being on that med “long term -“more than 10 years is slim

The important thing is finding a med that stops inflammation for your kid
Period
Safety profiles are great
Effectiveness numbers are wonderful
But if it doesn’t work for your kid it doesn’t help
Every kid on here is different

We all “picked” the perfect med with our docs
And sometimes that worked for a while and other times we had to move on to something else we didn’t think was as good only to find for that kid it was the best option

Ds has been on 5 biologics so far (three for crohns )
In 9 years

So fingers crossed it works
It takes 12 months or more to start working so
Goid luck

Thanks. I do hope he won`t be on them long. He is being treted as an adult, so I am not sure he will have the benefits of changing immune system. I would be happy if he would be off long term medications.

 

[my little penguin]

Sorry for the confusion
Yes he will need to stay on maintenance meds for his entire life
Once on a biologic you switch to a different biologic when the first stops working
He just will probably need to switch from one biologic to another
Typical pediatric crohns starts at age 15-22
So that is where the changing from inflammatory to stricturing/obstructions/fistula happens during those 10 years after dx

Only less than 2 %of pediatric crohns starts before the the age of 10 and an even smaller percent before age 6-8 etc...

So even if he is being treated as an adult by an adult Gi he will always have pediatric Crohn’s disease which is a different phenotype then adult Crohn’s disease

They label the same way with juvenile arthritis
Even once the child turns 18 or 21 they still have juvenile idiopathic arthritis (Ds has this as well )

 

[kiny]

Regarding biologics, We have a lot of data on anti-TNF medication. One of the things we discovered is that patients on 'combination' therapy, were azathioprine was combined with anti-TNF, were at risk of serious side effects. Patients on anti-TNF monotherapy had far less risks. Combination therapy is rarely used anymore.

It takes a long time before there is reliable data. We have such data on anti-TNF, anti-TNF has been used for over 20 years to treat crohn's disease. We do not have any of that data on newer biologics. It's something to take into account too.

 

[kiny]

He is 16. What is the health/life expectancy of patients who have been suppressing their whole immune systems for 10/20/30 years ?I know Entyvio is not risk free, but so far it has been the only medication to suppress just one (target) area instead of the whole body.

Well, regarding 'suppressing their whole immune systems for 10/20/30 years'.

Medication like infliximab (remicade) is dosed based on the weight of the patient (standard 5mg/kg for crohn's disease patients), and usually given every 8 weeks, and has a half-life of a few weeks.

The fact inflixmab takes into account the weight of the patient is rather important, not all biologics are dosed like that. This type of dosing ensures that patients who are underweight (common with crohn's disease patients) don't get exposed to unnecessary dosing. This is again something that was learned over time due to extensive data on infliximab, data that often doesn't exist for other biologics.

While infliximab blocks TNF-alpha cytokine (they are released by macrophages, it's a signaling pathway), it doesn't completely block those cytokines and due to the short half-life of infliximab, the medicaiton leaves the blood rather quickly, quicker than other biologics.

While anti-TNF intervene during the inflammatory cascade, they are only able to block a specific pathway for a limited amount of time.

Patients also get tested before administering the medication the first time, patients get a 'mantoux test' to rule out latent TB for example.

The way anti-TNF are administered has changed a lot, the data on anti-TNF is extensive. The data on other biologics is lacking, if other biologics are safer is more a matter of time. Maybe studies will discover things or risks that weren't apparent before. So I would be 'careful' about people or doctors claiming that newer biologics are safer, there is simply very little reliable data on them.

What we do know, and I think that is important, is that those newer biologics are far less effective at controlling inflammation in crohn's disease patients.

 

[kiny]

A comment about Entyvio. Data shows it is highly ineffective in crohn's disease patients. It was (eventually) approved for crohn's disease, but never as a first-line therapy. Giving this medication as a first-line therapy is very questionable.

Regardless.

The doctors describe ileal inflammation in your son who is 16 years old. This matches classic crohn's disease, a disease that manifests itself during puberty (likely due to peyer's patches activity) and is mostly isolated to the ileum.

This is the disease I have, this is the disease that was described by Dalziel, this is a description of standard, classic, crohn's disease.

When studies show limited benefit in a very small number of patients on Entyvio, one has to wonder how many of those patients have classic crohn's disease and how many have a form of intestinal inflammation that involved colon inflammation, often no ileal inflammation, often with age-of-onset that doesn't match classic crohn's disease. One has to wonder if those few outliers in Entyvio studies that do seem to be helped by Entyvio, even have crohn's disease, and how relevant that data is to people with classic ileal disease.

In my opinion, a lot of data regarding Entyvio is questionable, and not very relevant to people with classic crohn's disease. When there are lots of patients in a study with atypical crohn's disease, patients with age-of-onset that doesn't match the typical 14-24 years of age of crohn's patients, patients with no ileal involvement, alarm bells should go off.

 

[Tesscorm]

Kiny, thanks for all that info re entyvio

While there are no plans to move my son from
Remicade to another biologic, at his last apptmt, his GI did mention he wud one day ‘consider’ moving him to Entyvio.

the comment came as we were discussing the various weird infections, rashes, my son periodically comes down with. His GI said something along the line that if infections, etc become more of a problem, he wud consider entyvio as a possible switch. And, IF I’m remembering correctly, it was due to a lower risk profile and/or a lesser impact on immune system.

so I appreciate all the info you’ve shared here TY!

 

[my little penguin]

@Tesscorm

infection risk is extremely low with Stelara as well

Events per 100 patient-years
Serious infections occurred in 0.3% of STELARA®-treated patients (0.01 per patient-year of follow-up) and in 0.4% of placebo-treated patients (0.02 per patient-year of follow-up)

From
https://www.stelarahcp.com/plaque-psoriasis/safety-profile
Just depends where the inflammation is
Stelara does well on the TI /small bowel
But can help with psoriasis and some arthritis

Entivyio does well on the large intestine colon area
But does not help with any other area

 

[Tesscorm]

hmmm, thanks MLP. Given your explanation, now I'm wondering if I've confused Entyvio with Stelara?? Because S's inflammation has always been primarily in his TI/small bowel area. Seems likely my memory has gotten it reversed.

 

[Joannhasch1972]

Hi Majka, welcome to the forum but also sorry that you had the need to find us.

My son was diagnosed when he was 16 as well. Everyone is different but we have been very lucky in that he's responded well to his treatment and has been stable since diagnosis.

His initial treatment was one week on IV flagyl (antibiotic) and 6 weeks of exclusive enteral nutrition (EEN) (diet of nutritional formula only - no other food). After the six weeks, he did partial/supplemental EN - added back a regular diet (after reintro of food) and continued with half the dose of the nutritional formula for the next 1.5-2 years. He also took Nexium.

All his symptoms disappeared. However, MRIs continued to show some inflammation.

Upon transferring to an adult GI, the new GI was not comfortable leaving simmering inflammation and did not believe the supplemental EN was enough to treat his crohns; GI started my son on remicade. It's now been approx. 7 years that he's been on remicade.

His crohns has been under control since then... some twinges here and there but nothing really to worry about.

He has had a number of other infections... respiratory, skin rashes, other weird things are end up being only 'quasi' diagnosed before symptoms just go away... But, everything has resolved.

When my was diagnosed, I was terrified of what his future held. My aunt had crohns and she'd had a terrible time of it! That was all I knew and assumed my son was headed to that. I couldn't have been more wrong. Crohns affects each person differently. Where the inflammation is located, how it progresses, condition when diagnosed, how the person reacts to treatment, etc.

Since my son was diagnosed, he's graduated high school, completed a demanding degree in university, played competitive hockey on two teams until 18 years old, continued playing recreational hockey until now, he's travelled with friends, he's had injuries and surgeries (shoulder and jaw) unrelated to crohns and has recovered from both very well. He's started working and has moved into an apartment with friends. Crohns has not held him back.

Aside from the schedule of infusions, the biggest inconvenience is the number of dr apptmts because it does seem he is prone to 'weird' symptoms and injuries (definitely he keeps me on the edge of my seat!). But, from my perspective, while these are inconveniences, they are manageable.

I haven't offered any real advice because you've already received great advice from the best here. But, I did want to reassure you that things likely won't be as bad as you fear... try to take it one day at a time. Do learn all about crohns, I found this helped me immensely! And do come for support and advice - I wouldn't have made it through the first year or so without the support and help I received here.

I hope things go smoothly for your son!!

Got a ?? I’m new here also I came across this thread in forum here searching for any help as to what my son is going thru! He’s been having frequent tummy issues every passing year n it seems to be in with school so we decided to put him on Zoloft thinking it help but in end of Jan my son has went down!! I’m upset as I type here. He is six foot tall n has always been super thin n had tummy issues which lead to vomit fits. We assumed because he ate something etc. end of January he lost weight started out 120 n fell to 114 within two weeks he dip down to 104! I took him to children’s hospital n they ran everything on him ct scans ultrasound. X-ray stool samples blood tests every thing they hospitalized him n called in Gi dr pediatric after talking to me he suspects IBS n elected scoping but my son caught flu in the hospital! We’ve had to delay it til March 2 anyway the hospital jumped the gun started saying he had a eating disorder! I quickly took him home!! He weighs today 107 but still in slot of pains! The drs gave him bentyl zofran n Prilosec which nothing is helped him he’s in bed n looks so fraile !! I don’t know what to think. After researching n reading things here in forum he has a lot of what ppl say here! I’m scared he has ibs n I don’t know how they treat it! The dr said likely my son will b admitted right after the scoping but didn’t say why! Do u know? If this is possibly a dx how do they treat it safely without issues from catching other things and can he go back to school or be home taught?? Anything u can tell me what I’m looking to once he has been dx I’d appreciate it

 

[crohnsinct]

Before I comment, I just want to confirm what exactly the doctors told you. Did they say IBS -irritable bowel syndrome or did they say IBD - inflammatory bowel disease (Crohn's and Ulcerative Colitis).

 

[crohnsinct]

Also you may want to start your own thread in the parents section as you will get a lot more views and feedback that way. You can actually just copy what you wrote here and paste it in your own thread

 

[Joannhasch1972]

Before I comment, I just want to confirm what exactly the doctors told you. Did they say IBS -irritable bowel syndrome or did they say IBD - inflammatory bowel disease (Crohn's and Ulcerative Colitis).

They said ibs however they are also looking at ibd

 

[Maya142]

My kiddos have been on biologics for about 10 years now. One of them only has inflammatory arthritis and the other has Crohn's and severe arthritis. I would agree that starting with the most effective drug is most likely to lead to remission. Many kids are on Remicade for YEARS without issues. My daughters both happen to have friends who have Crohn's. Both of those girls have been on Remicade 7-8 years. They have infusions every 6-8 weeks and are perfectly normal young adults - one is in college and the other has graduated and is working.
My girls have not had any issues with biologics and they have been on MANY biologics. They were on biologics and an immunodulator in middle school, high school and now college. Both my girls actually have been less sick than their peers, despite living in dorms and apartments with other germ-y college students . Both got through school without any infection issues. They get 1 cold a year, if that.

Ironically, the only biologic that caused side effects for my daughter (the younger one who has relatively mild IBD and severe arthritis) was Entyvio. It made her arthritis worse and she actually got drug induced Lupus from it (confirmed by blood work). However, that is apparently very rare. She did seem to improve on it but she only had 2 infusions before we stopped it, so it's hard to tell.

But we were told the same from GIs at one of the top children's hospitals in the US that Entyvio really does not work well for Crohn's, especially Crohn's in the small bowel. Our GI was willing to try it because my daughter had mild disease (in her colon and terminal ileum) but said that biologics like Remicade and Humira work much better, particularly for small bowel Crohn's. Stelara is also another option - that does work for the small bowel, but it takes quite a while to kick in (at least 6 months). But so does Entyvio (we were told that could take 6 months to a year to work!).

I know the idea of suppressing the immune system is scary, but studies have actually shown that untreated IBD is more likely to cause complications - long-term inflammation can lead to strictures, fistulae, abscesses and even, over time, to cancer. The way someone explained it to me once was that with meds, side effects are possible - as they are with any drug. But with untreated Crohn's, complications aren't just possible, they're probable.