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5yo Son Diagnosed 1/20/21

I am not so much afraid of the shot, more so how it will impact him. I stuck my cat with hundreds of needles, that part doesnt really bother me. I will not show my distress with him, I'm pretty good with that.

Gotta get a buzzy bee. Oh and does Zofran taste horrid?
 

my little penguin

Moderator
Staff member
The pill just dissolved under the tongue
My kiddo never complained about taste
He used to take it for migraines
Amazon has buzzy bee
 

crohnsinct

Well-known member
Great News! (man I miss our dancing poo). Down to three relatively formed BM's a day this early and without steroids?! That's amazing progress!

Second MLP's suggestions. The giving at night before bed really helps and now that he has a week of folic acid in him he should do much better. Plus who know why he vomitted last time. It could have been anything. There was a lot going on that day and a lot of different meds being introduced.

Honestly all kids go through something. Someone once said, "if we all walked into a room and put our troubles on a table and you had to pick one back up you would likely walk around the room and pick your own back up".

Keep reading the success stories. The first year is the hardest. Once he gets to remission you will likely forget about Crohn's except for on infusion day. Look at O, the kid has been in a flare for 5 years. Didn't stop her from doing everything she wanted in high school, went to college across the country, did everything she wanted in college and is getting ready to go to grad school...all in a flare and with a summer in the hospital sprinkled in there. She has refractory Crohns a small percentage of people have that. You wouldn't even know her sister has Crohns.

You've got this!
 
Got his methotrexate shot, didn’t get sick overnight, was a bit restless. Woke up and said his left thigh hurts, he doesn’t want to stand on it. Doesn’t hurt to touch. Anyone ever have an issue like this?
 

crohnsinct

Well-known member
Is that where you gave the shot? Maybe @my little penguin or @Maya142 have an idea. We used the stomach because neither of my girls had enough fat on their thighs to grab up enough to administer a shot. Barely had enough in the stomach either but definitely was the easiest place.

Hooray for feeling o.k.!
 
Shot was in his left arm. He was crying quite a bit, didnt want to stand on it. Carried him to the tub and it seems to have subsided. We have a call into the doc as well.
 

crohnsinct

Well-known member
Hmmm. Front of leg, thigh? No clue. Arthralgia is a common extra intestinal manifestation in Crohns but it is usually joints not the front of the thigh. Although he is young so might not be articulating where it hurts very well.

Maybe he slept on his leg wrong if he had a fitful night of sleep?

Glad you called the doc. They will be able to ask the right questions and you will feel better. I hope it is nothing more than normal kid shenanigans.
 
Also was reading about avoiding antibiotics while they on Methotrexate? He’s on amoxicillin, Flagyl and Vancomycin 3 times a day. Another question for the doc
 

crohnsinct

Well-known member
Ask away! Better for them to have an engaged inquisitive parent than one who doesn't care.

FWIW - You aren't supposed to be on prednisone and the two antibiotics O is on either but she is.

Hospital pharmacists are stellar at flagging drug interactions and mistakes in dosing or method of administration...they save lots of lives. So the fact it was administered in the hospital would make me feel a lot more comfortable but I would still ask. You will get a good education add own the road can advise others.
 

my little penguin

Moderator
Staff member
The inside of the top of the thigh ?
Inside would be the hip
Definitely let your doc know
Abx and methotrexate are high doses of mtx not those used in crohns or arthritis
Ds has been on mtx and erythromycin daily for many years
 
Ya, it is tough get a specific area from him as to where it was. Spoke to one of the docs, they said give him some tylenol and keep an eye on it if it gets any worse. He took a hot tub, seems ok, he's favoring it a bit. Not sure if its legit or he's just afraid it will hurt.

Also asked about all the antibiotics with the Methotrexate, they said this combo is used very often in treatment, so gotta trust them I guess.
 
Yes, it's only a problem to mix antibiotics and methotrexate when you're on very high levels of mtx; the levels used for IBD are actually really low compared to some uses.
 
Oh, wait, I've read before that methotrexate can have a very bad interaction with amoxicillin. Not advised! I'll find a link
 

my little penguin

Moderator
Staff member
Amoxicillin and methotrexate are fine together
The studies where it is an issue are when methotrexate is used as chemotherapy
Ds has been on amoxicillin including iv stronger version without any issues
We have had this cleared by many rheumatologists(at multiple top hospitals including chop ) and Gi (including chop )
Please rest easy on the amoxicillin and methotrexate
 

my little penguin

Moderator
Staff member
Chop is the number one children’s hospital in the country
Your child’s doctors are well aware that your child is on methotrexate and amoxicillin.
If they had any concerns they would let you know .
It’s still fine to ask if you have concerns
We have asked especially after the first time Ds was on the combo abd the Pharmacist scared us - bold warnings etc...

not an issue in 6-8 years so far
 
I'm glad to hear that it doesn't always cause problems, but I would still make sure the doctors are aware of the potential interaction. These things can get overlooked.
 

crohnsinct

Well-known member
Never hurts to ask but I maintain that it was prescribed at the hospital so when they put it into the system the system would flag it as a bad combo and even if the system some how missed it the hospital pharmacy staff would catch it. I really think it is fine and since you spoke with your doc and they assured you that they do this all the time, I think you can rest easy tonight.
 

Maya142

Moderator
Staff member
EDIT: Wrote this before seeing there were additional posts after you mentioned you were dreading his shot.

That is a good point - little kids can tell when you're tense. You want the shot to become routine. That's harder when you're terrified yourself! My husband was never able to inject my daughters. He offered to learn but I honestly think he was more anxious than they were!

You want to get to the point where it's very normal - Saturday nights he showers, puts on PJs, he has his shot, gets to watch something or some sort of reward (dessert, a sticker chart - anything), brushes his teeth, you read him a story or two and he goes to bed. No big deal, no drama.

It's a tiny thin needle and my girls swear it doesn't hurt. Inject him wherever he has the most fat.

While doing the shot, try to distract him. We always did TV - in the middle of a movie or tv show so they were focused on the TV and not the shot. I've heard another parent say that they've used a fast-paced video game and the kiddo never even noticed when the shot was given! For biologics, we also used ice before the shot, for about 15 minutes (we didn't bother with MTX because they didn't find that painful), which helped numb the skin. Buzzy can help too. Like MLP said, give him as much control as possible - which arm or thigh or where on his belly he wants the shot. He can choose if he wants the parent not doing the shot to hold his hand or he could choose sit on your lap or your wife's. He can pick out a colorful bandaid before the shot.

We always gave Zofran 30 minutes before the shot and then once or twice the next day IF it was needed. Just because he threw up last week doesn't mean he will this week. Good luck.
 

crohnsinct

Well-known member
P.S. After some time on the antibiotics, you will likely cycle two weeks on, two weeks off and eventually when Remicade can handle things on it's own, you will probably stop them. So This isn't a long term combo so it is likely that you are fine.
 

Maya142

Moderator
Staff member
Where is he pointing? His thigh? Where his leg meets his torso? Groin pain can come from the hip joint. Pain on the outside of his hip or his thigh is more likely to be muscular. Try and get him to point to where the pain is.

There are extra-intestinal manifestations of Crohn's. It can affect the joints. You can have arthralgia, which is joint pain. It hurts, but it's benign and goes away once the Crohn's is under control.

Or you can have arthritis which is inflammation in the joint, which causes pain. The inflammation in the joint(s) may go away when the Crohn's is under control - that's more common when large joints like hips or knees are involved. Or the inflammation in the joints can be separate from the inflammation in the gut, like in my daughter's case. In her case, her Crohn's can be in remission and she will still have active arthritis or vice versa.
The GOOD news is that both MTX and Remicade do treat arthritis, so even if he has that (which he probably doesn't), he will likely get better as the drugs kick in.

When (what time of day) is his pain worst? What makes it worse or better? Does heat help? Does moving around help? Does he look stiff or walk stiffly, particularly in the morning?

If the pain persists, I'd ask to see a pediatric rheumatologist. If it goes away, I'd just wait and keep an eye on it.

In terms of helping with the pain, a bath is a great idea! You can also use heating pads or ice, depending on his preference.

I agree with what other parents have said about MTX and antibiotics. The dose of MTX he is on is teeny tiny - those warnings are generally aimed at people who are using MTX as chemotherapy and are taking 1000 mg or more - not 10 mg. The pharmacist will often flag the script for abx, but your GI has been using these drugs for years and would not prescribe something unsafe. My daughter has been on Amoxicillin plenty of times with MTX - no issues. You did the right thing - you checked with your doctors and they aren't worried, so you shouldn't be.
 
Thanks all. I’m going down the google rabbit hole tonight and freaking myself out. Your knowledge and experience is extremely helpful and appreciated.
 

Maya142

Moderator
Staff member
Stay away from Dr. Google! As hard as it is, I'd say wait and watch. Let us know how he's doing tomorrow - particularly in the morning.
 
It's been several days, thought I would check in. How is it going?
Thank You! He’s doing well. Aside from the 15 min potty trips, you’d never know anything was up. Averaging 2 times a day, still some blood, but prob 80/20 brown to blood. Hasn’t complained about his leg. Checkup and Remicade at CHOP on Weds. He really is doing well, wants to wrestle me constantly. He’s also got a taste for carnation shakes, so that I am very thankful for.

How long did it take you all to get over your diagnosis. I am still bitter inside. Every person I see I go why isn’t that person chronically ill. It’s a disgusting place thing to think, but I’m doing it constantly. Even thought they very well may be. I’m mourning our simple life, I don’t want this for him. Just hope he does well and we can enjoy ourselves and I’ve envisioned it. I feel very sad when I wake up in the morning. Went to Whole Foods today and I was worried he would have to poo..just sucks.

You all definitely help...so thanks!
 
You are still at the grieving stage. My son was older, and I felt the same way you are describing, very sad for him and wondering if he would ever have a normal life. But eventually you will see they are leading normal lives and doing well, and it gets better. You will not be as pained. Also, you are still learning, and not knowing is always scary, but you will learn more and more about this condition, and if you are always on top of the treatment, he will likely not get as sick again. I think it is always more challenging when you have little ones going through this. You will feel better. For me, it took a few months. Once my son seem to be doing well, I wasn't as obsessed about his activities. You will always think about it, and maybe obsess about things that are normal, like an occasional tummy ache, etc., but you won't feel this way forever. You will see how well your child will do. You are doing everything right.
 

my little penguin

Moderator
Staff member
Right ^^^^
talk to your therapist
Talking through things helps
Your in Holland now also helps

It’s not the end of the world
Nit the end of normal
But it’s a different experience than others
For him he is five
He will not mourn the “normal “ you crave
He will continue to play grow and thrive
It will be a minor part of him
No more than any other part
Not defining just accepted and moving on
You will grieve what you thought would happen
But even without chronic illness many many things outside of our control happen
In life
This just means your child can be more flexible
And handle challenges that life throws at us better
Again talk to your therapist -grief has many stages
 
Thanks All, you guys/girls definitely help.

He’s on a bit of a hunger strike today. Luckily. I cans convince him to drink carnation shakes. Had a huge poo this morning, more blood, and 2 more this afternoon. Unfortunately it’s looks like the turn is happening, his infusion is on Weds at 1pm. I think we’ll be ok, but feels like 1 step forward 2 steps back...MUTHER BLEEP!!! Extremely frustrating, really hoping we can enjoy spring and get this under control in the next month.
 

my little penguin

Moderator
Staff member
So it’s a good thing
You saw a BIG improvement
And your seeing the med levels go down
Each time more inflammation is attacked
Not all the inflammation but more
So in 8-12 weeks you should be in an entirely different place
I wouldn’t expect it to be settle by next month though
Plan for much later (may June time frame )
And be surprised if it happens sooner
That is quick for Gi land by the way
 
Ok thank you for the reassurance. I just keep thinking if he turns again we are back to square one. Talked to the on call she said to give a call in the morning with an update, and they will see if there are any openings to get him in for an infusion tomorrow. There is no doubt he’s shown improvement, just sucks when it turns within 24 hours.
 
Question!

Got him in for a 5pm Remicade Infusion today. They won’t do an IV port in his hand will they? He’s asking and I’m telling him it will go in his arm, hoping thats the case.
 
Called and they said unless he already has a port it wouldn’t his hand..so fingers crossed!

So glad they got us in today, infusion suite was staffed Dr.Kelsen got us in.

thanks MLP!
 

crohnsinct

Well-known member
My kids always got and get it in their arms...they hate the hand. But I think it just all depends on where they find it easier to get it in. The infusion nurses are pros though and know a lot of tricks so I would guess if you say arm they will get it in.

So glad he is doing well and is getting his infusion quickly!

I hope you are hanging in there and were able to get a session with your therapist to help you process all of this. I am not one to give advice on this area because when my daughter was diagnosed she was so sick we almost lost her. We had no idea that she had been filling the toilet with blood for weeks. She was in ICU so when they said Crohn's and steroids and Remicade, I was so relieved we knew what it was and there was a treatment that I skipped the whole grieving, anger etc part. Then when my second daughter was diagnosed I was already old hat.

Good Luck!
 
I totally understand that crohnsinct! When they first said he may have IBD, I was like YES! Didnt really understand the magnitude, but you all have helped level me out a bit.

He actually had an improved poo today. I think the carnation shakes are helping.
 

Maya142

Moderator
Staff member
I love the "Welcome to Holland" piece that MLP posted. There is real grief when your child is diagnosed with a chronic illness. It takes time, but I PROMISE things will get easier. You'll find your "new normal." And there are actually some advantages to be diagnosed young - he will never know anything different and while you may grieve the loss of a normal life, he probably won't. And at some point, things will become stable and you'll stop thinking about Crohn's all the time.

As for infusions, the IV is often placed in the elbow area or on the arm. Sometimes yes, they'll have to put an IV in the hand. My daughter actually prefers IVs in her hand and finds IVs in her elbow harder because then she has to keep her arm straight (if it's right where you bend your elbow). You can always tell the infusion nurses that he does not want the IV placed in his hand if possible. They're great at CHOP and they'll do their best to avoid his hand. Over time, veins can become scarred and then it does get more difficult to place an IV, and you may not be able to choose where it's placed. My daughter had one really good vein in her hand and they used that until it was too scarred to use. But that typically takes years and some kids don't have issues with veins and scarring even after years of infusions.

How is he doing now? How often are his infusions right now?

You can try switching shakes - if he is sick of Carnation, then you could try Pediasure or Boost Kids.
 
He is doing good. Infusion went well last week, now fingers are crossed we can make it to next week. Right now he’s going every 2 weeks. 2-3 poo’s a day, still see blood, but expected. Methotrexate once a week. HGB and Albumin were up on his labs, and I can see color in his face again.

I am struggling..therapy, meds and exercise and still struggling. My dad getting covid and dying while all this was happening has me on high alert and feeling very vulnerable. This whole IBD process feels very dooming. I feel sick when I wake up in the morning.

Quick question, what shots can’t he get. He has a checkup with his primary today, which is also freaking me out.

thx for listening
 

crohnsinct

Well-known member
Great progress and fast! Is he doing any rectal therapy? Suppositories, enema or foam? Those could really help with the bleeding. They aren’t super pleasant but they do work really well. Different kids have different success with each method.

As for vaccines it is just the vaccines that are live. Flu vaccine they just can’t use the nasal mist but they can get the shot. Pediatricians are usually well aware of what your child can and can’t get and with all the electronic medical records these days the system usually flags them if they try to order something and there is a contraindication.

Is he still on antibiotics daily?
 
Yes we are using proctofoam and honestly it’s one of the highlights of all of this. We uncontrollably laugh every time we do it! Only once a night.

Still on the daily antibiotics, they want to dial back the amoxicillin to 2 times a day. Flagyl, Vancomycin 3x a day..although past 2 days we’ve only got 2x in.
 

my little penguin

Moderator
Staff member
4-5 year check up -typical
MMR is live i think ? —-so not allowed
dTaP is inactivated
Polio is inactivated
Chickenpox is live I think ? -so not allowed
Flu shot is inactivated as long as it’s the shot not nasal spray
Nasal spray is not allowed
 
As I give into my OCD an and go down the rabbit hole of reading 10 year old Remicade studies in Children, I come back to this thread to reset myself.

One poop today, semi formed with blood. Does it seem odd to have 1 poo in 24 hrs and still have blood? Appetite and energy level was good. Antibiotics and proctofoam continue. Methotrexate Weds, Remicade next Tues..I hope we make it.
 

crohnsinct

Well-known member
It does seem weird because if the colon is diseased enough to bleed, it is generally too diseased to have a formed BM but stranger things have happened. How much blood are we talking? Is it bright red? Only on the toilet tissue? Dripping at the end of a BM? A tablespoon worth? Covering the stool? Remember when blood hits the water it looks like a lot more blood than what is really there. When my daughter has to quantify how much blood for her GI, she will use a hat and then assess.

Answers to the above will give you an idea of where the bleeding is coming from. It could be a hemorrhoid or a fissure in which case the Remicade won't fix those. But they will heal as the disease heals and stops causing issues. The suppositories should help them though.

If it is more blood than just a little on toilet tissue and a little in bowl it could be coming from further up in the colon. My daughter bleeds from the beginning of her sigmoid colon. In that case, suppositories don't generally reach up that far. Suppositories generally only reach the rectum and maybe the very end of the sigmoid if you are lucky. Enemas and foam will reach further up.

I think he is in a good place and you could probably sit tight for a bit. Especially with just one BM in a day. When do you check in with GI next? You could mention the bleeding and see what they say.

Don't read studies. Especially old ones. Or personal horror stories. We aren't docs and don't have the know how to evaluate cases or studies, how they were designed, population recruited, study size etc all play a part. Think of it this way....if you paid a car mechanic to fix your transmission, would you go in after them and try to fix it again because you read an article on transmissions? You are at a great hospital with well qualified docs. Trust them to do their job and you do yours...which of course is video games;) I am not saying you shouldn't be an informed consumer....just know when to say when.
 
I would assume we’re not allowed to post pictures, if we can I will.

It’s actually blood in the stool. The last one looks to be on top, a bit of coagulation, and as you said it hits the water and then kinda look worse. It’s not surrounding the entire poo though, brown to red is prob 80/20. When I compare it to the worst of what we’ve seen a it’s a massive improvement, but any normal person that hasn’t been thru this and didn’t have a diagnosis would probably be calling an ambulance. There is blood topically on the poo. It’s funny when he eats oatmeal his form starts to come back, that soluble fiber is good.

We have some hats, I’ll see how today guys. Have been trying to avoid them as I think it freaks him out. The downstairs toilet has a slope in it where the poo sits and it’s pretty easy to what’s going on. Upstairs it goes right in the water and it’s impossible.
 

crohnsinct

Well-known member
"and didn’t have a diagnosis would probably be calling an ambulance" LOL. I say this all the time!

Massive improvement is good. Take it and run with it. ya know one thing our GI told us once about my daughter's continued bleeding is that sometimes when they are healing you will still see bait of blood and that is the old ulcerated skin sloughing off as the healing occurs. So maybe that is what you are seeing? Either way, frequency and bleeding are down so that is good!
 

Maya142

Moderator
Staff member
I would assume we’re not allowed to post pictures, if we can I will.
I'm a moderator - I'm honestly not sure if we're allowed to post pictures of bloody stool. I'll try and find out. If not, you can post pictures in a private message to any other member - perhaps @crohnsinct can help you assess since her daughter tends to bleed.

Yes we are using proctofoam and honestly it’s one of the highlights of all of this. We uncontrollably laugh every time we do it! Only once a night.
This made me laugh! I think that is the best response I have heard a child have to rectal therapy. You have an amazingly resilient kiddo!

I'm so glad things are getting better. I know it's hard not to focus on the bad parts, but to me, it sounds like he is SO much better. I would definitely try to limit your time reading old threads - remember that the parents on these forums are often ones whose kids are not doing well - if they're doing well, parents tend to stop posting. Many parents tend to come here when their kids are flaring, so posts tend to be scary or negative. That's why it's SO important to read the Success Stories thread and just to keep in mind that these threads are not necessarily representative of all the kids who have IBD.
 
Yes, we use quite a bit of potty humor in general..I'm basically a 10 year old in a 42 year old's body.

2 poo's yesterday, we are holding the line. Methotrexate today, Remicade next Tues. He's liking carnation shakes with lactose free milk and Avocado Mint Chip Ice Cream.

Have my therapy session today, so I will feel good for a bit. I am almost in disbelief that this medication is going to help us get some normalcy back without hurting us. I get hesitant to even say he is doing really well.

Oh also, he had a tooth that needed to be pulled in the midst of all of this happening. We have the tooth, there is a ridiculous looking hole in it. Just thinking, is it possible that was the trigger to this or his belly issues were the cause of the tooth. Just crazy..

One more quesiton...how long has everyone used proctofoam for? Think it will 3 weeks this Sat, but we only do it once right before bed.
 

crohnsinct

Well-known member
There is some theory here on the forum that Crohn's leads to tooth issues so possibly.

O needs to use proctofoam pretty regularly and long term. That and Uceris (a late release steroid). There are quite a few adults on the forum who also use rectal therapies regularly. Most of them get to a point where they can stop for a few weeks or only use it once a week. It is still early yet. Give healing some time.
 
Ya, I am all about keeping it in the routine! I feel like its a direct hit on cutting down the urgency and is helpful before bed.

I havent mastered filling the plunger yet though, seems like its hit or miss.
 
Hi,

He did good. Labs look good HGB is 11.6, Albumin 4., C -Reactive Protein 0.5, Sedimentation 10, PTT Profile 35.0

Got Remicade and Iron, gonna check his Remicade levels and Calprotectin in 2 weeks. Is there a worry if a kid has too much Remicade in his system.

I am still struggling with all of this, he does so well. Gets upset when they tie him off and put hot packs on, but never fights.
 
Don't worry about too much Remicade. My son was at 10 mg/4 weeks for over a year. He recently was reduced because levels were too high but he didn't have any side effects from having too much in his system. It's better to have more than too little.
 

Maya142

Moderator
Staff member
My kiddo was on experimental "high dose Remicade" because she has VERY stubborn arthritis - up to 20 mg/kg every 4 weeks. We did it at 3.5 or 3 weeks occasionally. Her levels were high but no issues with infections or even any side effects.

Do you know what dose he's on? It sounds like he's having infusions every 2 weeks right now, which is pretty frequent. But I'd trust your doctors. They wouldn't do it if it was unsafe. And it looks like all his labs look good!!
 
Yep, he's getting 10mg of Remicade, and .4 ml methotrexate once a week.

Listened to a phenomenal podcast with Jeffrey Hyams in discussing pediatric IBD, was very helpful.
 
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Hi All,

L continues to do well. avg 2 decently formed (no diarrhea) poo's a day with traces of blood. 5 weeks ago we were in inpatient at CHOP and he was outputting what looked like oil and blood mixed together, pure liquid. Next Remicade infusion is next Monday.

Question, is it possible to initially present with really bad (severe) scopes which showed ulcers throughout his colon, and rebound from that with treatment to a milder form of IBD? This is my hope and dream however far fetched it may be.
 
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my little penguin

Moderator
Staff member
Are you asking can his gut heal to look nice abd pink and pretty ?
Or that he no longer has severe disease
Ibd is about control of inflammation
Whether that mild , moderate or severe at diagnosis
It’s about controlling the inflammation (stopping it ) and getting nice pink pretty intestines
Some never reach the nice pink pretty intestine
Most however do
So whether you categorize the disease as mild moderate or severe as long as you reach the goal
That’s all that matters in the end game

Ds had “mild” crohns in the beginning at dx
We accidentally caught it very early (he was only not gaining weight so they went searching for a cause
And due to his other inflammatory conditions (vasculitus,juvenile arthritis) his mild Crohn’s disease was hit with heavy duty crohns meds (biologics plus immunosuppressants ) very early on
Our first Gi stated they don’t know how his disease would have progressed and know from studies the earlier biologics are introduced in crohns for kids the better the long term outcome

thankfully Ds has been doing extremely well crohns wise for years and we want to keep it that way

So while Ds has moderate juvenile arthritis that has not shown active inflammation (just simmering amounts fir years )
He is still considered to have moderate arthritis
It just means the docs keep a close eye and monitor it to make sure it stays quiet
 
Ya, I guess I was asking is it possible to have a milder form of IBD where you wouldnt need biologics. Or is it more, once the cat is out of the bag, you cant really return to how it was handled before the big flare happens. I guess the goal is to stay on top of it to avoid further damage.
 

my little penguin

Moderator
Staff member
Imo biologics have far more bang for the buck
The pyramid of treatment starts at the bottom with the least risky but also the least effective treatment choices
Way back when they only gave biologics to those who failed everything else so the outcomes weren’t as good
Now they know to use them sooner abd that is changing the natural history of the disease (surgery rate was really high for kids prior to biolgics )

so while it may be scary to think this is long term
It’s better to think wow
My kiddos intestine can heal
Life can be good
And oh by the way crohns is very far back on our day to day things to think about in our lives
That is what biolgics do for most not all
But most

so embrace the good as long as it lasts

lower lever meds didn’t get my child feeling well and had a ton of side effects that made him feel like crap
So after 9 plus years
Big fans of biologics
Disease category is what it is
Cant turn off the light switch
 
I also get stuck in between people going, "you can live a normal life with IBD!", and the people that appear to be at the threshold of hell. The uncertainty is driving me to the brink of insanity.
 

my little penguin

Moderator
Staff member
Most in online support groups are those that need a lot of help since their disease does not respond
Self selecting group
Those who have it good are not on here
Too busy living

Also remember adults may have had the disease for years prior to attempting higher level meds
Including biologics
Why because most meds didn’t exist
They just didn’t
You had tpn (no food at all not even formula ) and prednisone
So years of damage
No good meds
Not a great disease even 15-20 years ago
Now there are better meds
Better control
Embrace the good
 
Just looking at the scope reports from Jan and my heart dropped. Its looks as if the really bad portions of L's disease are in his Cecum. To actually see it is making me feel sick.

When they biopsy that would be a check for cancer cells correct?
 

crohnsinct

Well-known member
NO! Biopsies are done to look for granulomas and other indicators of IBD...NOT CANCER! For example, I recently had my old lady scope to screen for cancer. They saw two suspicious ulcers and biopsied them to specifically look for Crohn's even my two daughters have Crohn's. Totally different than looking for cancer. When they do a cancer screening scope they are looking for adenomas and polyps etc. Then they will biopsy those. IT is regular procedure to biopsy multiple areas of the ileum and colon to look for evidence of inflammatory changes that might indicate IBD.

Feel better now?
 
Haha..actually feel worse. How would they know if cancer was a possibility if they do not screen for it? Just by the scope? He had so much blood in his cecum.
 

crohnsinct

Well-known member
On your other comments.....Is it possible to maybe get to a point in your disease course where you once needed biologics but can someday taper off them and maintain disease on a lesser drug. Yes, possible but not likely. It does happen, just not very often. However, the lesser drugs are immunomodulators and if you ask anyone here, those drugs actually carry way more risks and side effects than the biologics. Your choices are azathioprine and methotrexate. Aza is pretty much out given he is a boy and there is a link to an extremely rare hepatosplenic T cell lymphoma which is aggressive and incurable and happens more in teen males who are on aza so not a lot of pediatric GI's would use it with him although there are some kids on it and they do perfectly fine.

As discussed here, methotrexate actually carries way more risks and side effects than the biologics although still not too bad and they don't happen very often.

So if I were you, I would more be looking at getting my kid into remission using mtx and Remicade and hoping that at the year mark once we are out of the woods with the high antibody risk, look to taper off methotrexate.

As to classification of disease, don't get hung up on severe, moderate or mild. That is just how your kid presented but a lot of that could be length of time they had the disease and how long it went untreated before the first flare. It does not mean that you will always be a severe case. Rather the better way to classify disease is age at dx, stricturing, fistulizing or inflammatory disease, need for steroids etc. Then as time goes on they count how many times you have needed steroids, how many drugs you have lost response to, number of flares requiring hospitalization etc. BTW - the initial flare that requires hospitalization is almost never counted as a "hospitalization" because they recognize that it was simply because you didn't know you had the disease and let things get bad. They are more concerned with hospitalizations while on long term treatment and under prolonged care of a specialist.

One of my daughters has pretty mild Crohns and confined to her T.I.. we tried all the lower level drugs and nothing got her to remission. We eventually moved to Remicade and that has worked. It seems terrible to put a mild kid on a biologic but it is much less terrible than letting her disease take over. Because we treated the disease appropriately she has stayed mild for 6 years.

Second what MLP said about reading the stories here. People who are not having any problems have no reason to come on here except those of us who decide to stay for a bit and pay it forward with advice etc. Even some of us come and go. You can in no way generalize about ow your son's experience will be based on what you read here. All people are different and have their own unique journey and an overwhelming majority of people have a very easy journey.
 
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crohnsinct

Well-known member
Haha - they will screen for cancer down the road. At most centers they screen around the 8-10 year post diagnosis mark. BTW this is another reason to get inflammation under control quickly and consistently because it is the prolonged inflammation that CAN contribute to cancer. He has youth on his side also!

If it makes you feel any better, O has very aggressive and refractory disease. Dx'd at 12, now 21. Has been in a five and a half year long flare. Was in the hospital the whole summer of 2019. FCP consistently over 1000. She had her scope and they found polyps. Biopsied those and there was no sign of cancer. Neither the scoping doc, her pediatric GI or the adult GI she is going to transition to are in the least bit concerned about cancer BUT they will scope her once a year to screen for it.
 

Maya142

Moderator
Staff member
Ya, I guess I was asking is it possible to have a milder form of IBD where you wouldnt need biologics. Or is it more, once the cat is out of the bag, you cant really return to how it was handled before the big flare happens. I guess the goal is to stay on top of it to avoid further damage.
Your son's colon can certainly heal and get "pink and pretty" as @my little penguin calls it ;) . My daughter was not diagnosed with severe Crohn's - she was diagnosed with mild Crohn's (and at some point along the way they started calling it "mild to moderate," whatever that means), but she did have small ulcers throughout her colon and inflammation in her TI. After 8 months of Remicade and MTX, her next scope showed that her colon looked "beautiful" (that is really what the doc said!) and all biopsies were perfectly normal in her colon. Her TI had very mild inflammation seen on biopsies but visually looked pretty good.

It is very possible that over time, your son's colon will heal and go back to looking beautiful. Remember that this is a marathon, not a sprint and that it took quite a while for his colon to get into that shape, so it will take time to heal (think months, not weeks).

As for stopping biologics and going a step down on meds - I honestly think you shouldn't even want that. Biologics work best and are definitely MUCH less risky than Azathioprine or 6MP - they have been linked to a very rare type of cancer, especially in adolescent males, and they increase the risk of non-melanoma skin cancer and can cause your WBC to fall very rapidly so you need weekly blood work for quite a while after starting either of those drugs. Plus because of the cancer risk, most pediatric GIs will not even use them.

MTX is safer than Aza/6MP, but it's still not as effective as the biologics. Your goal is first to stabilize your son and get his gut to heal and then to maintain that. Biologics are the best meds to do that - the most effective. You want to avoid the need for steroids and you want to avoid complications like abscesses or strictures or anything that requires surgery - like you said, any further damage.
 
Hi All,

Made our 2 week Remicade infusion. Hemoglobin is 12, Albumin is 4.3, Sedimentation Rate 2, C-Reactive Protein <0.5. Gotta get some poo for Calpro test. He has been pooing once a day, little to no blood. Appetite is good, trying to get a shake a day in him.

They are testing his Remicade levels to see if they can push him to out 4 week infusions, so we shall see. They were very happy to see that he hit the 40lb mark for the first time. He was around 36 back at the end of January. Weening off the 3x 3x a day antibiotics, only taking vancomycin 3x a day. They said we can stop the proctofoam, or use as needed.

So I'd day we are doing good...hesitant to say it.
 
Remicade level came back 37ug/ml. So we are gonna try to make it until 3/21 for our next infusion, which would be approx 23 days.

One poo in the last 40 hours, zero blood and it came out in under 5 minutes. That has not happened since late November.
 

crohnsinct

Well-known member
That is amazing! Perfectly normal calpro! My girls would give an arm to get under 200! One of my daughters says calpro under 200 is a myth.
Enjoy the good times!
 

Maya142

Moderator
Staff member
One of my daughters says calpro under 200 is a myth.
Didn't O once have a calprotectin that was 16 or something like that? I vaguely remember her sister accusing her of sending in someone else's poop 😂!

On 2/13 his calpro was 1,120, latest test from 4/10 he was at 62

Goal is to make it to Weds 4/21 for his next Remicade infusion and checkup.
So glad your son is doing better!! That is wonderful news - that's a very normal calprotectin!!
 
Thanks All.

I start to slightly relax, and today we’ve been having a lot of hiccups and sour burps. So I panic, google and wonder if this may be related to elevated liver enzymes from the methotrexate?
 

my little penguin

Moderator
Staff member
Ds has lots of hiccups and burps
Reflux is common in crohns kids
Not a big thing
Relax
Do Not Google
Your doc monitors all bloodwork
And they watch
Your ok
 

Maya142

Moderator
Staff member
Is he on oral steroids? Those can sometimes be hard on the stomach and cause reflux. Antibiotics can too.

If he starts to complain, I’d let your GI know. My daughter has always had reflux issues and has been on Prevacid for years (but she has other GI issues besides IBD which cause bad reflux). But she has always had trouble tolerating oral steroids and antibiotics.
They can put him on a PPI like Prevacid or Prilosec or something like Pepcid temporarily, if necessary.

I wouldn’t worry about it unless he starts complaining of heartburn, stomach pain, reflux in his throat or mouth etc.
 
Good Morning.

No steroids. Remicade, Methotrexate, and vancomycin, which we will be weening off next week. He hasnt been burping or hiccuping the past few days. Pushing his Remicade out to 4 weeks.

Hemoglobin is up to 13, Sed rate is 2, C-Reactive Protein <0.5. His WBC count is 5.8, is that something that will get low with Remicade and Methotrexate? Low end of normal range right now. Also pushing his Remicade out to 4 weeks.

Thank You!
 

crohnsinct

Well-known member
Yeah some kids dip low with Remicade and more kids do with mtx. O was often very low with mtx. We would occasionally hold for a week, retest and if back in range restart mtx.
 

my little penguin

Moderator
Staff member
Ds has been on mtx woth other biologics for years and always sits at low end of normal
Except if they add pred then it jumps way up

Never had an issue
 
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