Newly Diagnosed 9yrs old boy

Hi were new here...
My son was diagnosed on the 17th January 2017 with crohn's disease after 1+ year of wondering what he have.

We rushed him to the hospital because he had a "boil" with open up and puss was oozing out of it, we didnt know it even existed or that its there.

Prior to the he had been complaining of uncomfortable feeling in his backside and its pain to the touch so we made sure to wash him gently with water after his visit to the toilet.
We thought its just a reaction to gluten since he had been eating outside food for the past few weeks. (we put him in gluten free diet and his diarrhea subsided thats for the whole of 2016)

We spent 10days in the hospital and after numerous examination, blood testing, colonoscopy, endoscopy and a detailed MRI... he is diagnosed with crohns with inflammation in the large intestines and stomach and perianal ulcer.

the MRI results havent come out so we dont know the extent of the inflammation and wether his small intestines is also affected or if he have other ulcers anywhere else.

Now he is on liquid diet (modulen) for 8 weeks
pentasa for 3x a day and antibiotic 3x a day
until he gets his chickenpox vaccine doctor said have to take the above medication before starting on the auto immune suppresant (which im not to keen about and researching about it)

few days after discharge he is complaining of heartburn and has problem passing motion because of the extreme pain he is going thru....
and he seems to be developing a skin tag around his anus and i think this is the one causing the pain and he complains that it is extremely itchy
I can see that the flesh is raw, the last time he pass motion there is a red blood when cleaning him up but when i let him lie down on the bed to check i cant seem to figure out where the bleeding is coming from wether from the anus, the skin tag or maybe a fissure somewhere or from the open wound (ulcer that burst) on top of his anus....

is there anybody have the same experience who can give me advice...
or any remedy for the pain from the skin tag

we will be seeing the surgeon team later today because of this

its been a roller coaster ride for me and husband.
its really hard to see your child go thru pain

thanks in advance

Hi and welcome. My son also struggled with a peri anal abscess which ended up with a fistula. He had lots of antibiotics before it settled then surgery on the fistula. Thankfully that cleared up. We also did the Modulen but I've no experience with heartburn.
Unfortunately immunosuppressants are a necessary evil for us. It took me 6 months to agree to try But the calprotectin kept going up so we had to. It's been 5 years now and it seems to keep things in check. Good luck with all the treatments, hope you get remission as soon as possible

I'm sorry that your son is having to deal with so much right now. I hope that the Modulen diet starts giving him some relief from some of his symptoms soon.

I agree with Sascot that immunosuppressant drugs are usually a necessary evil with Crohn's in kids. Yes, the possible side effects are a risk, but untreated Crohn's seemed far riskier to us. My daughter has been on Remicade and methotrexate for several years, thus far with minimal side effects.

What medications are your doctors recommending for your son's long-term treatment?

Hang in there. The first 6 months after diagnosis are hard, but it will get better.

Welcome and I'm sorry to hear of your son's dx. My son presented similarly at the same age, but is now 15 and in remission on Humira. Best of luck to you, it's a rough road, hang in there!

I'm sorry that you and your family are dealing with this diagnosis. But, as was said above, the first few months are the toughest, until treatment kicks in and begins to work.

It's been a number of years since my son was diagnosed but he did have some pain from fissures at the beginning... sitz baths with epsom salt and penaten cream helped.

Re the heartburn - my son also had heartburn prior to being diagnosed and he was prescribed Nexium. I think the cause of his pre-diagnosis heartburn was resolved with the nexium and/or treatment but, then he began to have heartburn from using an NG tube. Does your son drink the modulen or is it ingested through an NG tube? If thru the tube, this might be contributing/causing the heartburn. What we were told is that when the tube is in place, it doesn't allow the flap between the stomach and esophagus to completely close and this allows acid to leak into the esophagus. As my son ingested his formula overnight, we elevated the head of the bed to help a bit.

Later in his treatment, my son moved to partial liquid diet. At that time, he was only ingesting the formula 5 nights a week. The explanation above matched his symptoms as he would have heartburn only on the days after ingesting the formula overnight. On those days, he continued with nexium.

Please note that long term use of nexium can also have some long term side effects. However, my son used nexium for two years without a problem.

Good luck, I hope you begin to see improvement soon.

Hi , I am new here to My 11 yr son was dX 12/20.16 . His issues came to our attention with the pain in his backside. His doctor put him on Prilosec to help with the acid in his bile. It seemed to work after a week or so ,in the meantime I found that Dermoplast really helped with the pain he was having on the short term. It worked way better than the prescription cream did ,and it is over the counter. I don't know why the doctor did not suggest it. I thought to use it because it was given to me once after having my first baby. I told the doctor I was using it and she said it was fine , but check with your doctor first.

Pooksmom what is your Ds dx? And what meds is he on ??

Thecrohns we have all been there at dx
I didn't want Ds to take anything
I cried a lot
He was only 7
I read the scary side effects and was very determined that he shouldn't take these meds since he looked ok on the outside (in pain but ok )
I came here and others explained
Your intestines are like a garden hose very flexible and let things move through as they should
Ibd cause cycles of inflammation
This builds up "scabs" to fix it and later turns to scar tissue
The scar tissue is hard (think pvc pipe ) and not flexible so
You can end up with fistulas (extremely thin tunnels of make shift intestine that GI from the intestine to places it doesn't belong -like the skin /stomach etc...)
Or strictures (the scar tissues narrows the hard pvc pipe too much )
Or obstructions (complete blockage )where intestines can rupture and cause sepsis

Crohns wil cause growth delays of not treated properly
Infections and other things

I only say this so you understand while the drugs have risks of potential side effects
Crohns has a known history of progression
75% of kids dx have surgery within 5 years

So finally after years of only having prednisone as an option (not good long term for anyone )
They know have immunosuppressants such as mtx aza and 6-mp
Ds has taken two out of the three - of enough by themselves for him
Biologics are even scarier on paper but
Less side effects for my kiddo and what he needed

He has had Crohns for 6 years and been on biologics plus immunosuppressants for close to 5 years

Crohns wise things are very good

He also supplements with formula so his growth remains on track with his peers

It is scary but seeing your kid grow and thrive is well worth it

Saving as much of the intestine by keeping it healthy for as long as possible is my goal


So far so good
Since biologics his scopes look pretty

Good luck
And lots of hugs
We have all been there

I posted the same message twice and do not know how to delete. Sorry.

My little penguin,

His Dx's is crohns and he is on Pentasa ,and predisone along with the prilosec. He is still having painful cramps and bloodly stools and now consitipation , The fissure has improved.

Hello everybody
Thank you so much for all the very important information... we're new to this And Been reading a lot... we just got discharge from the hospital today so sorry for late reply there's not good signal there.

My son is put in liquid (modulen) diet for 8weeks
Taking pentasa 3x a day for two weeks until we see our doctor on the 14 again
And we are taking flagyl 3x a day for another week

The autoimmune suppressant will start after they check if he got the antibody (chickenpox)

Now I'm more inform with all the information you all shared.. I just need my husband to read all your post to get him to understand it as well...

Thank you again

Oh yeah he is drinking the modulen (it was a relief knowing that he like the taste) but he is starting to hate it now (we are on the second week already)

Bribery
Lots of bribes
We and grandparents paid Ds by the week when he was een (formula only )

Good luck

guilty here we do that too

Yup, we bribed too. It also helped if the formula was cold and if we used a straw (then it bypasses some of the taste buds).

Good luck!!

we started having problem with taking the modulen starting his 2nd week, even bribery doesnt seem to work anymore because everytime he starts drinking it he will have gas pain... could the pain be from pentasa? or he is not drinking enough...

TheCrohns said:

Hello everybody
Thank you so much for all the very important information... we're new to this And Been reading a lot... we just got discharge from the hospital today so sorry for late reply there's not good signal there.

My son is put in liquid (modulen) diet for 8weeks
Taking pentasa 3x a day for two weeks until we see our doctor on the 14 again
And we are taking flagyl 3x a day for another week

The autoimmune suppressant will start after they check if he got the antibody (chickenpox)

Now I'm more inform with all the information you all shared.. I just need my husband to read all your post to get him to understand it as well...

Thank you again

Oh yeah he is drinking the modulen (it was a relief knowing that he like the taste) but he is starting to hate it now (we are on the second week already)

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Hello, welcome to the forum!

Although I'm not a parent myself, I just wanted to let you know that I'm currently on Modulen (2ish weeks more to go), I've recently got the chickenpox booster vaccine, and I'll be starting Azathioprine in about two weeks' time too. Your son is definitely not alone.

Modulen is tough, no doubt. I hate every drop of it too. After a couple of weeks, it does start to take a toll on one's psychological health, be it the patient or the people around him. It takes a bucketful of perseverance, a sackful of determination and a hell lot of grit to see it through. EEN is not a one-man show. Your son requires loads of encouragement from the people around him during these 8 weeks. Food may be a sensitive topic at this point in time.

Is your son allowed to have any artificial flavourings like Nesquik in his Modulen? That may add some variety to drinking nothing but formula milk for the next few weeks. Maybe you'd want to talk to the doctor about it?

There's so much more I want to share, but it's just too much to type at one go. Feel free to give me a shout whenever you feel like it. My inbox will always open to your messages. Please convey my words of encouragement to your son. I hope he achieves remission soon! (づ｡◕‿‿◕｡)づ

Some of the things I've used for pain around the anus: Tucks wipes, Desitin, A&D, Baby Wipes Natural with Aloe, Ice Cold Wash Cloth between cheeks for relief. If you can afford look into a Bidet, we are getting one soon. My sister has one it washes and dries, gives the bum a needed rest from toilet paper.

Liquid diets get hard. Make popsicles out of soups you get tired of sweet. You miss the chewing more than you'd think so gum helps.

Thoughts and prayers.

GI Jane
Liquid diets are not the same as een
Een (exclusive enteral nutrition -is formula only and no food)
It's used with kids to induce remission without steroids


Most do not permit gum or candy
Just water and ice

Hi and a late welcome.

My girl was 3 at dx and had done EEN /EN since then.
She's also been on drugs for most this time.
Remicade had been wonderful and no side effects.

As for bribery. ........
Ya, I can't even number how many beanie babies she had now. Lol
She's 8 now, so her taste is getting more expensive.

we started having problem with taking the modulen starting his 2nd week, even bribery doesnt seem to work anymore because everytime he starts drinking it he will have gas pain... could the pain be from pentasa? or he is not drinking enough...

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Sometimes drinking slowly can help - sipping, instead of drinking the formula quickly. If my daughter tried to drink it quickly to get it over with, she'd get very nauseous.

Wow I'm sorry that's really sad I had no idea. Not even gum that's too bad. Lots of video games, fruit Ninja challenges against each other kids love competition and great distraction. When I was on the clear liquid diet for awhile they allowed butterscotch candies to suck on, but the sugar I know can cause some problems and the sugar free gums can cause diarrhea but not regular my GI allowed me Doublemint gum, guess I was one of the lucky ones.

Isn't there a teen or kids site on here, or maybe that's a different site might help him to "talk" to his peers.
Thoughts and prayers.

TheCrohns said:

we started having problem with taking the modulen starting his 2nd week, even bribery doesnt seem to work anymore because everytime he starts drinking it he will have gas pain... could the pain be from pentasa? or he is not drinking enough...

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It may be that your son needs a more broken-down formula. We don't have Modulen here in the US, but I think that it is a polymeric formula, which means that the nutritional components aren't broken down (and also makes the formula taste better, so it's easier to drink).

My daughter tried polymeric formulas first, but they made her feel really sick, even when she sipped them slowly. She had to switch to a semi-elemental formula (Peptamen in her case). In semi-elemental formulas, the components are more broken down, so it's easier to digest. The problem is that they don't taste good. Some kids can still drink them, but many need to use an NG tube, so that they don't have to taste it. My daughter used a tube, and it was actually much easier than we thought it would be. The tube also feeds very slowly, which can make the formula more easily tolerated.

There are also elemental formulas, which are even more broken down and even easier to digest, but they also taste even worse.

Modulen in the uk is similar to peptamen jr
A semi elemental formula from what I understand


ETA
I was wrong
Modulen is whole protein

Modulen IBD is a unique whole-protein, powdered formulation for for the dietary management of the active phase of Crohn’s disease to be used as a sole source of nutrition and for nutritional support during the remission phase. It is 100% casein-based, supplemented with optimal levels of lipids and carbohydrates with a low osmolality level for good tolerance and great taste.

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From
https://www.nestlehealthscience.com/brands/modulen

My daughter could not tolerate polymeric or even semi-elemental formulas either. We had to go to an elemental formula - Neocate - and she was unable to drink it so we used a tube.

NG tubes really sound a lot more intimidating than they are. Some kids insert them every night and do the feed overnight and remove them in the morning. My daughter did that - so no one at school had to know. Other kids prefer to just leave them in - typically younger kids do that.

I was really surprised at how quickly my kiddo got used to the tube. The first couple nights were hard - her nose and throat were sore, but within a few days she was inserting it in 10 seconds, with no issues at all. She finally started gaining weight and had more energy and now she says having a tube is WAY better than drinking formula and she'll never go back to that!

Hello Guys thank you for all the messages Ive read them all and its very helpful.

Tried to give everybody hugs, those I havent...hugs to each and every one. I appreciate all the support, the messages you post really means alot.

An update with my sons condition...

After discharge on the 2nd Feb 2017 we went home with the same medication and was given chicken pox vaccination (additional medicine is LOSEC for reflux)

we had a scare on 6th Feb 2017 because of extreme chest pain that comes and goes every 15-30seconds, he would scream in pain...

(he was having this pain since 1st feb even when we were in the hospital but not as much, his doctors prescribed Losec Mups twice a day but this didnt help at all) The doctor actually thought she gave us this medication when we were first discharge from the hospital on Jan! and telling us that we should have given the LOSEC... and I was like "what is that?"
I was angry because his pain could have been lessen if they check medications given just incase he experience stomach cramps or reflux etc... i mean im sure they have patients with the same symptom specially if you are putting a child into an 8 week liquid diet. Its frustrating you can just imagine my angry red face

so back to the 6th Feb... the losec medication is not working and aside from stomach cramps now he is having chest pain as well, we called the ambulance and he was rush to the hospital . They did an ECG and xray and everything is okay... so the emergency doctor in charge said it could be that he is having reflux and its going up making the chest contract causing the pain, because hes stomach is making adjustment to the liquid diet hence the reflux etc... so the doctor gave him magnesium carbonate and his condition subsides... less chest pain after 20mins....
So we were discharge with additional medicine (magnesium carbonate)

The next day we gave his first round of medication pentasa, flagyl, losec then after two hours we gave the magnesium carbonate!

That day we have less 70% of pain and i was so happy to see him smile again after a week in agony...
Hes drinking his modulen way better without thinking that the modulen will give him pain because after drinking the reflux will come.

With regards to his fissures, I clean it twice a day flushing, antiseptic spray, packing and cover with gauze...

He did had an inflammation again and started the signs of forming a skin tag and redness around his anus.
I tried to give him sitz bath... i boiled guava leaves and mix that with warm water and let him sit in the bathtub for 20-30mins twice a day...
the skin tag became smaller and one of ulcers the smallest close up in 3days and the redness subsided. till today im still giving him the guava sitz bath.

Guava leaves when boiled is great for sitz bath to help cure wounds, they use this for women who gave birth vaginally to help heal the wound faster (as sitz bath as well)

It works wonders.

Were ending our 3rd week of modulen, 5 more weeks to go!
we finished our last tablet of flagyl last night and only on pentasa now...
plus the losec and magnesium carbonate but im trying to wean him off that two meds because I think there is less reflux now and he is starting to have sharp headaches.
Our next appointment is on the 14th we have a valentines date with his doctors hahaha

he will be tested that day and another test if the chicken pox vaccination is good.

The doctors want to put him on immuno suppresants... Azathioprine
but i read about biologics and the best way to go to treat crohns??? any thoughts on this?
I mean they said that biologics has most patient have their life back more quality of life i think...
How long is this medication for (biological also called TNF) is it for lifetime?

thanks for all the informations again...

And sorry for the long update, i dont get a chance to check online so yeah

Loves and hugs!

I'm glad to hear that the magnesium carbonate and sitz baths are helping. And congratulations to your son for making it through 3 weeks of Modulen!

My daughter's doctor prefers to start with biologics, so that's what we did, and I'm glad. We added an immunosuppressant (methotrexate) a few months later, which is supposed to help avoid the formation of antibodies to the biologic.

Starting with biologics is more common here in the US. Are you in the UK? If so, it seems like more doctors there start with azathioprine and only move on to biologics if that doesn't work. It also seems like doctors in Europe are more likely to stop biologics after remission is reached, whereas in the US, you tend to stay on them unless you develop antibodies. Let us know where you are located, and then hopefully someone from that area can give you more information.

pdx said:

I'm glad to hear that the magnesium carbonate and sitz baths are helping. And congratulations to your son for making it through 3 weeks of Modulen!

My daughter's doctor prefers to start with biologics, so that's what we did, and I'm glad. We added an immunosuppressant (methotrexate) a few months later, which is supposed to help avoid the formation of antibodies to the biologic.

Starting with biologics is more common here in the US. Are you in the UK? If so, it seems like more doctors there start with azathioprine and only move on to biologics if that doesn't work. It also seems like doctors in Europe are more likely to stop biologics after remission is reached, whereas in the US, you tend to stay on them unless you develop antibodies. Let us know where you are located, and then hopefully someone from that area can give you more information.

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were based in singapore, not many kids have crohns here so theres not much support (forum wise like this)

so far we saw two doctors about his diagnosis and the other one pro biologics and the other immunosuppressant azathioprine

I was reading that nowadays they start treatments from top down meaning biologics first then when it is "more in control" then they step down to immunosuppressant.

I hope you dont mind me asking... how long did you take the biologics?
I wanted to know because here in SG biologics comes with a hefty price :shifty:
so at least i know what im gonna face :redface:

In the US, your child would be on biologics as long as they work. My girls have been on biologics for years - 7-8 years. They should NOT be stopped and started because your child can build up antibodies to them - and then the drug becomes less effective or stops working altogether.

The research does indicate that biologics are the most effective drugs for both inducing and maintaining remission. They are also good for kids who have delayed growth. In the US, doctors are starting to use them sooner -- for many kids, right after they are diagnosed. The thought is to get the disease under control quickly, so the child has a better chance to grow and gain weight normally.

They also lessen the chances of complications like strictures, abscesses, fistulae etc.

That said, I understand cost may be an issue.

In the US, Methotrexate is being used more and more now - I'd ask if that is an option. It is safer than Azathioprine.

My daughter has been on Remicade for just over 2 years so far. Right now she gets 400mg every 6 weeks. Humira is the other common biologic used for kids with Crohns. Both Remicade and Humira are very expensive, unfortunately. Azathioprine and methotrexate are both much less expensive.

If you decide to start with an immunosuppressant alone, I agree with Maya that it's worth asking about using methotrexate.

thanks pdx and maya,

will ask his doctors about the treatments on the 14th february.
I am keen on biologics because his case of crohns is diagnosed as severe and we have to pull him out of school because he have ulcers in and out the body as well as inflammations in stomach and large bowels.

we havent seen his detailed MRI results so we dont know if his small intestines is inflammed as well...

I just want my boy to be lively again, he lost so much weight its sad and heartbreaking

:ghug: Hope he starts feeling better really soon.

TheCrohns said:

were based in singapore, not many kids have crohns here so theres not much support (forum wise like this)

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Hey, I'm from Singapore too! It's my first time meeting a Singaporean here on this forum, so that makes you even more special!

It's true that there are not many people in Singapore who have Crohn's, and if I recall correctly, the study a few years ago put the number at 2400 people suffering from IBD. Apparently three-quarters of IBD sufferers have UC, and a quarter have Crohn's. However, the numbers are currently rising. My GI doc said that in the last 4 years alone, he has seen 2 new patients. And he's one of a team of four gastroenterologists specialising in IBD at NUH.

Congratulations for getting your son through three weeks of Modulen. I hope he's adjusting well, and the flares are getting some form of control. I hope he's doing well in school too, despite the Crohn's.

Sending you some support! Keep fighting!

CYY ^^

Hello.. I am new to this forum
I have a 7 years old boy and he is been having a low fever for the past week only in the evening. and with out paracetamol his fever went to normal in the morning. He is still active and he has no complain of any abdominal pain. The doctor did some blood and stool tests on him and the result of his CRP is 22.8 and his calprotectin is >2100. His doctor is recomended for endoscopy and colonoscopy.
Is this precedure safe for a 7 years old?
By looking his result would he has IBD? coz it worries me so much now.
Thank you

Ds was dx at age 7
He is now 13 and has had many scopes
Upper and lower endoscopy can be preformed on infants and toddlers
Not an issues with older kids at a pediatric hospital (in the US )
They use pediatric scopes for little kids and give them twilight sleep

Is the symptoms and indications of the tests leading to IBD? Planning to do endoscopy and colonoscopy next week.
I am glad to find this forum so i can get more informatio. and support

ndo2erin said:

Is the symptoms and indications of the tests leading to IBD? Planning to do endoscopy and colonoscopy next week.
I am glad to find this forum so i can get more informatio. and support

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Those symptoms could be signs of IBD, but the endoscopy and colonoscopy are needed to know for sure. Good luck with the scopes, and I hope they give the doctors enough information for a diagnosis.

My son is scheduled to habe colonoscopy on tuesday. He still have mild fever in the evening but he is still active as usuall. Hope the scope goes well..

Good luck with the scope
That's hardest on the parents
The kids take a nap

Hello Everybody,

its been ahwile since my last post here, sorry me and hubby and even my eldest son been working extras to earn for the medical bills thats been piling :|

Our boy havent started treatment yet because the 1st chicken pox vaccine came out negative and they have to give him the booster and we have to wait another 6 weeks for the treatment starts.
Prior to this he was given pentasa 3x a day and put to modulen diet for 8 weeks then the doctor added another 4 weeks on top of that 8 because we have to wait for 6 weeks more before the azathioprine...

this coming week marks the first week we can re introduce food to him and its making us anxious because we dont want him to get more inflammation than what he is dealing now.

Hes abscess became a fistulae 3 weeks ago and thats one of the major complications we are facing because its not healing at all and its been 3 months already. It just seems to be getting bigger or progressing.

weve seen a private doctor for a second opinion on our sons case and he strongly recommend biologics because of the severity of his condition but also mention about the cost that goes with it. its about 25K for a year after subsidy from our medifund. We asked our doctor about it and she mention that the goverment wont approve biologics until we have tried the lowest treatment.
Its frustrating all together because what if he doesnt get better with immunosuppresants and the next level of treatment after that? my son will just wait and suffer in vain for months to years until he reaches biologics treatment.
I wouldnt protest so much if he is much older and have gone thru his growing and developing stages already but the truth is that looking at his photos from before getting sick in 2015 to now... he seems to have shrunk, thinner and pale.
it breaks my heart.

I will update again about re introducing food to him and see what is good and what is not.
we are thinking to go SCD diet or PALEO... were leaning more on SCD
will update here again,
im taking notes from our researches and what is and whats not and hopefully have time to write it out in a blog somewhere one day and maybe other people will find it useful when dealing with newly diagnose crohns.

our next doctor appointment is coming soon at end of this month hopefully everything goes well..

Thanks for the update. I'm sorry to hear about everything your son and family have been going through. Good luck with everything over the next few months.

CYY said:

Hey, I'm from Singapore too! It's my first time meeting a Singaporean here on this forum, so that makes you even more special!
CYY ^^

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Hi CYY
oh im glad youre from singapore! ill send you a private message I have so much questions to ask :ysmile:

pdx said:

Thanks for the update. I'm sorry to hear about everything your son and family have been going through. Good luck with everything over the next few months.

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Thank you so much :rosette1:

im so glad i found this forum :ghug:

So sorry your boy is still suffering, my dd Lucy now 8 was plagued with anal fissures at diagnosis for a couple of years, they only cleared with humira, however before that we had a number of techniques that helped a little. Always clean the area with the shower after poo and leave dry naturally, while this didn't necessarily improve the fistulas it meant less pain after going to the bathroom. We also used a manuka honey gauze dressing and a manuka honey cream which soothed the area. This was all of course in addition to the usual antibiotics, immunosupressants etc. Hope he starts to feel better soon

Hi the crohns,
Sorry to hear about your challenges and I sympathize.
We are in KL, and my boy was diagnosed at age 10. We had a second opinion at National hospital in Singapore with Professor Quack, I believe he is now retired. We have been on Imuran (azathioprine) for several years and it improved my sons condition. His crohns has now shifted gears and moved to his rectum, he has 5 fissures and thickening, he also developed a abscess. We have decided to move on to Remicadee and the plan is to start on Saturday.
Good luck, I understand your frustrations of it being a very rare phenomenon in South East Asia. Wishing you and your son good luck.

TheCrohns said:

Hi were new here...

My son was diagnosed on the 17th January 2017 with crohn's disease after 1+ year of wondering what he have.



We rushed him to the hospital because he had a "boil" with open up and puss was oozing out of it, we didnt know it even existed or that its there.



Prior to the he had been complaining of uncomfortable feeling in his backside and its pain to the touch so we made sure to wash him gently with water after his visit to the toilet.

We thought its just a reaction to gluten since he had been eating outside food for the past few weeks. (we put him in gluten free diet and his diarrhea subsided thats for the whole of 2016)



We spent 10days in the hospital and after numerous examination, blood testing, colonoscopy, endoscopy and a detailed MRI... he is diagnosed with crohns with inflammation in the large intestines and stomach and perianal ulcer.



the MRI results havent come out so we dont know the extent of the inflammation and wether his small intestines is also affected or if he have other ulcers anywhere else.



Now he is on liquid diet (modulen) for 8 weeks

pentasa for 3x a day and antibiotic 3x a day

until he gets his chickenpox vaccine doctor said have to take the above medication before starting on the auto immune suppresant (which im not to keen about and researching about it)



few days after discharge he is complaining of heartburn and has problem passing motion because of the extreme pain he is going thru....

and he seems to be developing a skin tag around his anus and i think this is the one causing the pain and he complains that it is extremely itchy

I can see that the flesh is raw, the last time he pass motion there is a red blood when cleaning him up but when i let him lie down on the bed to check i cant seem to figure out where the bleeding is coming from wether from the anus, the skin tag or maybe a fissure somewhere or from the open wound (ulcer that burst) on top of his anus....



is there anybody have the same experience who can give me advice...

or any remedy for the pain from the skin tag



we will be seeing the surgeon team later today because of this



its been a roller coaster ride for me and husband.

its really hard to see your child go thru pain



thanks in advance

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My best advice for the skin tag is to protect it from fecal matter as best you can with something like Desitin so that it doesn't get more irritated. I assume the doctor can actually remove the tag if needed, but this will help make it less painful. Ask about Humira for immunosuppressant. I have found it works for me. Everyone is different. Find the very best specialist in your area, that is the essential. Or travel to one. Not every doctor is up on the most current treatments and surgical interventions if needed. All my best.

I had the skin tag thing and I will tell you it is hell! Over the counter numbing gel called recticare will numb it but to fully help him surgery and the healing process is not fun but 100% worth it. I'm so sorry for him having to go through this!

Jane and Nick said:

We are in KL, and my boy was diagnosed at age 10. We had a second opinion at National hospital in Singapore with Professor Quack, I believe he is now retired.

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Hey neighbour! Just wanted to point out that Prof Quek in still in practice at NUH. He brought a team of 5 medical students to take my oral history during my stay in hospital about a month and a half ago. Furthermore, I saw him at the paediatric clinic today, so he's definitely not retired.

I think Prof Quek has quite a sense of humour though. He kept paying me compliments just so that I would allow the medical students to interview me. When one of the medical students described me as "a 16-year-old girl who has been diagnosed with Crohn's Disease", he was quick to correct the student that I was "a lovely young lady". I felt flattered XD

On a serious note, Prof Quek is the most senior paediatric gastroenterologist at NUH, and he leads the team of four GIs there. Your son must've have been really lucky to have gotten him. I think he's quite a nice guy :>

Thank you very much ! I am extremely pleased to hear he is still in practice. I agree he is an excellent doctor.

TheCrohns said:

Hello Everybody,

its been ahwile since my last post here, sorry me and hubby and even my eldest son been working extras to earn for the medical bills thats been piling :|

Our boy havent started treatment yet because the 1st chicken pox vaccine came out negative and they have to give him the booster and we have to wait another 6 weeks for the treatment starts.
Prior to this he was given pentasa 3x a day and put to modulen diet for 8 weeks then the doctor added another 4 weeks on top of that 8 because we have to wait for 6 weeks more before the azathioprine...

this coming week marks the first week we can re introduce food to him and its making us anxious because we dont want him to get more inflammation than what he is dealing now.

Hes abscess became a fistulae 3 weeks ago and thats one of the major complications we are facing because its not healing at all and its been 3 months already. It just seems to be getting bigger or progressing.

weve seen a private doctor for a second opinion on our sons case and he strongly recommend biologics because of the severity of his condition but also mention about the cost that goes with it. its about 25K for a year after subsidy from our medifund. We asked our doctor about it and she mention that the goverment wont approve biologics until we have tried the lowest treatment.
Its frustrating all together because what if he doesnt get better with immunosuppresants and the next level of treatment after that? my son will just wait and suffer in vain for months to years until he reaches biologics treatment.
I wouldnt protest so much if he is much older and have gone thru his growing and developing stages already but the truth is that looking at his photos from before getting sick in 2015 to now... he seems to have shrunk, thinner and pale.
it breaks my heart.

I will update again about re introducing food to him and see what is good and what is not.
we are thinking to go SCD diet or PALEO... were leaning more on SCD
will update here again,
im taking notes from our researches and what is and whats not and hopefully have time to write it out in a blog somewhere one day and maybe other people will find it useful when dealing with newly diagnose crohns.

our next doctor appointment is coming soon at end of this month hopefully everything goes well..

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My thoughts and prayers are with you. It's so hard having a sick child. My daughter became diabetic at 7 years old. Seeing them so frail and skinny is so hard. I know, "The Makers Diet" by Joran Rubin worked for me for awhile, I think the library has copies of it now. The goodwill always seems to have copies. Hugs.

Hi everybody...
we started introducing food to him last week but he started to have loose bowel movement and frequent visits to the toilet which scared us so we stop the solid foods for now and back to modulen and the only thing added to his diet is homemade chicken or beef broth that I made using crockpot...
we will try to reintroduce food like boiled carrots add it to his soup and see how he reacts to that in few days..
Fistula wise, it started bleeding 3days ago and on the 2nd day we brought him back to hospital cos were scared that it might be coming from the inside and he might be bleeding from inside too. I remember the surgeons telling us that if it bleeds bring him back cos he might be bleeding from the inside and it might cause him to be anemic and he was looking paler than normal..
on the 3rd day it slowed down and stop.
My dilemma is that the doctors says if he takes the immune suppresant theres a chance that his fistula will heal much longer because the treatment will supress his immune system hence slows down the healing... is this true?
So the treatment is targeted to treat the inside and not the healing of abscess and fistulas??

im so stress because he started to have pain on his fistulas again....im so stress my hair is falling sigh...

Punkyble said:

I had the skin tag thing and I will tell you it is hell! Over the counter numbing gel called recticare will numb it but to fully help him surgery and the healing process is not fun but 100% worth it. I'm so sorry for him having to go through this!

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when he is having pain when passing motion sometimes its the skin tag that is causing it and its red and inflammed during those times... he is in so much pain when going to the toilet that he screams and wont want to drink his modulen because he is scared to go toilet.

polly13 said:

So sorry your boy is still suffering, my dd Lucy now 8 was plagued with anal fissures at diagnosis for a couple of years, they only cleared with humira, however before that we had a number of techniques that helped a little. Always clean the area with the shower after poo and leave dry naturally, while this didn't necessarily improve the fistulas it meant less pain after going to the bathroom. We also used a manuka honey gauze dressing and a manuka honey cream which soothed the area. This was all of course in addition to the usual antibiotics, immunosupressants etc. Hope he starts to feel better soon

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Hi Polly,

we also tried the manuka cream and paste, for his case it didnt soothe the area but he was in pain when I applied it, I have to stop dressing his wound and let he pain subside for half hour... they said when its pain its because its neutralizing the acidity of the wound, but he was crying and screaming that time that Im scared to apply it again the next day.
Im hoping i can use it again cos ive read alot of good reviews about it for healing fistulas and abscess..
Cleaning wise i clean him everytime he goes to the toilet and pack and flush his fistula twice because there still alot of exudate fluid coming from it.

for treatment, we want for him to take the biologics mainly because of his progressing fistulas if not for his fistula then we would have taken a more natural approach on healing but this time we dont have a choice but to lean on medicine to get his life back and at least go back to school.
we dont have the means to support for the treatment cos it cost 30-35k a year..
were approach by fundraising to help us for the cost of treatment for a year.
Im not sure if its allowed to post here, if not please let me know and ill delete it.
https://give.asia/movement/saving_caleb
would like to ask for support and kind donations or just to spread the word. :ghug: