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StayingPositive

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17 year old son diagnosed in late April. On 5 ASA for two months( pills plus enima) and was doing really great. Flare up started last Tuesday so we have had a very tough week. He has lost a lot of weight and is suffering badly. Not sure what to feed him and reading a lot but it’s all so confusing. Dr put him on prednisone Saturday and he is not tolerating it well so still Diarrhea and Vomitting.
Few questions -
- best Specialist in the NJ / NJ area?
- what nutrition has worked well during flare up
- best way to stay hydrated
- any tips for reducing suffering
Thanks guys
 
5-asa per Cochran report is not recommended as a monotherapy for crohns
It basically acts as a mild cream on the intestine only treating the surface layer.
UC only affects the surface layer of the intestine
Crohns affects the full thickness or all the layers .
So inflammation is left to simmer under the surface
Is he vomiting up the prednisone within 15 minutes of taking it ??
Or is he just not feeling better yet ?
Steriods can take weeks to work especially if he is really inflamed.

switching to formula only (no solid food ) can help
It acts the same as steriods
Ensure or boost are polymeric versions.

they can help
Semi elemental versions would be peptamen
Elemental vionex

depending on how close to Philly -chop has an excellent ibd center with satellite locations in NJ
You want a pediatric Gi at a major university hospital
nemours I think is in nj not sure how good their ped Gi is though

what maintenance med is the Gi switching him too ?
Methotrexate is next level on the drug pyramid
They don’t use 6-mp or imuran (aza) any more due to increased lymphoma risk
Biolgics would be remicade /humira

my kiddo was dx at age 7
Mild crohns
Started on Pentasa 5-asa
Got really sick ( or never got better )
Vomited on and off for the next year
While they tried 6-mp (8 months )
Then methotrexate (3 months )- got vasculitus on that one
So finally they agreed to try remicade at the ripe old age of 8
Within 6 weeks no more vomiting
No more diarrhea
Skin rashes but hey he was doing better
Allergic rx at 8 months on remicade
Then switched to humira - no more rashes
He is 17 now abd on Stelara plus mtx
good luck
 
Thank you so much.
Not vomiting Prednisone up immediately just overall not well and seems to vomit when he poops.
Also has had bad stomach pains so taking 625mg Tylenol every 4-6 hours
Dr has not prescribed any maintenance medicine yet as we are waiting to see her this week and she is hoping the steroids work.
As far as Ensure or Boost do I just buy one off the shelf at the store?
 
I would reach out to CHOP, Children's Hospital of Philadelphia. One of the top pediatric GI centers in the world.
 
my little penguin said:
5-asa per Cochran report is not recommended as a monotherapy for crohns
It basically acts as a mild cream on the intestine only treating the surface layer.
UC only affects the surface layer of the intestine
Crohns affects the full thickness or all the layers .
So inflammation is left to simmer under the surface
Is he vomiting up the prednisone within 15 minutes of taking it ??
Or is he just not feeling better yet ?
Steriods can take weeks to work especially if he is really inflamed.

switching to formula only (no solid food ) can help
It acts the same as steriods
Ensure or boost are polymeric versions.

they can help
Semi elemental versions would be peptamen
Elemental vionex

depending on how close to Philly -chop has an excellent ibd center with satellite locations in NJ
You want a pediatric Gi at a major university hospital
nemours I think is in nj not sure how good their ped Gi is though

what maintenance med is the Gi switching him too ?
Methotrexate is next level on the drug pyramid
They don’t use 6-mp or imuran (aza) any more due to increased lymphoma risk
Biolgics would be remicade /humira

my kiddo was dx at age 7
Mild crohns
Started on Pentasa 5-asa
Got really sick ( or never got better )
Vomited on and off for the next year
While they tried 6-mp (8 months )
Then methotrexate (3 months )- got vasculitus on that one
So finally they agreed to try remicade at the ripe old age of 8
Within 6 weeks no more vomiting
No more diarrhea
Skin rashes but hey he was doing better
Allergic rx at 8 months on remicade
Then switched to humira - no more rashes
He is 17 now abd on Stelara plus mtx
good luck
Click to expand...
How do you choose between polymeric or enteral for ulad
 
Hi, I'm so sorry that your son (and you) are dealing with this. My son was diagnosed just before turning 17 (he's 27 now... and doing well!).

My son's initial treatment was six weeks of exclusive elemental formula (no food, formula only). This replaced steroid treatment but it can be used together with steroids. The more 'elemental' the formula, the easier it is for the intestines to absorb nutrients (allows intestines to rest and heal). Polymeric formulas are the toughest to absorb, however, they are palatable The semi-elemental or elemental are much harder to tolerate from a taste perspective but easier for the intestines. As your son is already on steroids, it might be ok to just go with the polymeric (but please confirm all this with your doctor! I'm just a mom sharing her experience!). My son never used semi-elemental but I know there are many kids here who are able to drink the semi-elemental shakes. (My son used a naso-gastric tube to ingest his formula.)

I've read of people using BRAT diet when flaring (bananas, rice, applesauce, toast) but, given the very strict limitations, this can only be used for very short periods. But, perhaps, your son can try for a day or two along with the nutritional shakes - just to give him a rest if he's having a tough time with other foods.

While my son was on the formula only diet, he was allowed clear fluids which included broth, jello, etc. Again, these won't give you son much nutrition on their own but might tide him over (with the shakes) when he's feeling his worst.

Going forward, you do need to plan for a maintenance med. Yes, you/GI want the steroid to work to bring the flare down, however, you need a maintenance med afterward to stop another flare from coming. My son has been on remicade for approx. 8 years and has not flared since.

Just to give you some hope/comfort, things will settle! Since being diagnosed at 16/17, my son has graduated from high school and university, is now working, is living on his own, has travelled with friends, plays sports, has had surgeries related to injuries, not crohns, and has recovered as anyone else would have, has had his covid vaccines, etc. So, although it can take a bit of time and it can seem overwhelming at the beginning, once you find the right treatment, he will feel better and will go on with his life. :)
 
Boost or ensure is off the shelf at the grocery store
But your Gi should instruct you to do this
They have samples of semi elemental and elemental to try
They also wrote a prescription for your child to have the insurance cover the formula since 8 -shakes a day can get pricey

if you started prednisone Saturdaythey should have told you it will takes Weeks to months to feel better
Not a few days

While doing steriods and or een
You need to start maintenance med since they take weeks to months to be effective
So when you stop the steriods /een the inflammation does not come right back

needs to be both
Definitely seek a second opinion
We got two or three over the years. ;)
Always a good thing
Even if they confirm current plan is a good one
 
Understand if your child was dx with “mild” crohns
Top ibd specialists may not be your best bet
Since they tend to see the worst of the worst which requires most of their attn
And mild cases tend to fall through the cracks -take longer to get established as a patient and get a good medicine that works

chop May be a better fit
 
Honestly Mt. Sinai is top notch across the board. If you could get in with Dr. Dubinsky she is the real deal but they have many great docs and she is steering the ship. He is 17 and almost an adult so on the adult side at Mt. Sinai you also have Dr. Bruce Sands another heavy hitting guru. He and Dr. Dubinsky work closely together.

What dose of prednisone is he taking? MLP is right steroids often take more than a few days to kick in but I am curious to know what dose he is on because if too low they won't work.

The vomitting with a BM is not unusual in a bad flare. My daughter actually just started that trick also and when we told her GI he didn't seem surprised. If his frequency is high and he has diarrhea then he could be dehydrated and the dehydration will lead to nausea so it might not be a reaction to the prednisone as much as a consequence of a really bad flare. To combat dehydration you could use any electrolyte solution, pedialyte, gatorade, even the new Liquid IV has some good flavors and works well for my girls. Once you get him hydrated and not so nauseous the nutrition will follow.

I second what others have said that EEN is a good thing to try and that your GI really needs to be starting another maintenance med.
 
I'm from Canada so don't have any suggestions for U.S. doctors, however, just wanted to tell you that my son was diagnosed with crohn's at 19 and most likely had it for a few years before diagnosis. He also would vomit while pooping and this was during flaring. His initial treatment was sulfasalzine but didn't do much. He has been on Remicade for almost 3 years now and is doing well. He too lost a lot of weight before treatment (109 lbs at 5'8") and also has arthritis. Just wanted to share my story so that you know that things will get better once proper treatment is found. He finished University and is now working in the field that he studied for. Good luck.
 
crohnsinct said:
Honestly Mt. Sinai is top notch across the board. If you could get in with Dr. Dubinsky she is the real deal but they have many great docs and she is steering the ship. He is 17 and almost an adult so on the adult side at Mt. Sinai you also have Dr. Bruce Sands another heavy hitting guru. He and Dr. Dubinsky work closely together.

What dose of prednisone is he taking? MLP is right steroids often take more than a few days to kick in but I am curious to know what dose he is on because if too low they won't work.

The vomitting with a BM is not unusual in a bad flare. My daughter actually just started that trick also and when we told her GI he didn't seem surprised. If his frequency is high and he has diarrhea then he could be dehydrated and the dehydration will lead to nausea so it might not be a reaction to the prednisone as much as a consequence of a really bad flare. To combat dehydration you could use any electrolyte solution, pedialyte, gatorade, even the new Liquid IV has some good flavors and works well for my girls. Once you get him hydrated and not so nauseous the nutrition will follow.

I second what others have said that EEN is a good thing to try and that your GI really needs to be starting another maintenance med.
Click to expand...
He is taking 40 mg of Prednisone daily but is a bug kid Thanks so much for your insight. Take care
 
When oral corticosteroids are used, dosing is variable, and few data have been published to guide optimal dosing. The most common range for moderate flares of IBD is prednisone at 10-40 mg/day. For more severe flares, doses up to 60 mg/day may be used, but there are no supportive data. Once a clinical response is seen, the dose is tapered. Most patients who use oral corticosteroids can occasionally tolerate a relatively rapid taper after a response is achieved; a prolonged steroid taper is rarely necessary to prevent relapse. When the latter situation occurs, consider escalation of therapy with the use of alternative drugs (immune modifiers or anti-TNF therapy).
Click to expand...

from

https://www.medscape.com/answers/17...e-treatment-of-inflammatory-bowel-disease-ibd
 
So for my kiddo age 17 as well 5’10” (157 lbs )
They do
40 mg of pred for crohns flares (even when he was only 50 lbs at age 7)
60 mg of pred for asthma flares or anaphylaxis
He has had 100 mg of iv solumedrol prior to his first Stelara infusion for arthritis flare
As well as prior to remicade after his first reaction. To it .

but 40 mg is pretty standard for prednisone dose
 
Dr. Dubinsky is great - we actually saw her and my daughter was seen at CHOP. Her GI was at CHOP (and has now moved away) and at one point we saw Dr. Dubinsky for a second opinion. She was very good and Mount Sinai is a great hospital but it was much more fragmented care. At CHOP, my daughter's GI, her dietician and other specialists all communicated relatively easily. It was also more child focused and more comfortable for hospital stays. I know your son is a teen and so my daughter was also 18 when we considered switching. But ultimately, she decided she preferred CHOP. They have a much bigger pediatric IBD program that is probably the best in the country. At the time, my daughter needed a feeding tube placed because she was so underweight and Mount Sinai didn't have a single doctor that could place the tube (which is a very simple surgery)! After hearing that, we went back to CHOP. We felt her needs were better understood and taken care of at CHOP. They even have psychologists within the GI department who can really help kids and teens adjust to having a chronic GI illness - my daughter's psychologist was an incredible help and she still sees her, many years later! There are CHOP satellite centers across NJ, so it's not like you have to go to Philly necessarily to see a GI there. But that was our preference - Mt. Sinai is a good hospital too, with some great GIs.

in terms of what to eat, my daughter was given semi-elemental formula at CHOP - they are much easier to absorb than Boost or Ensure. My daughter was severely underweight and formula made a huge difference. Steroids also definitely helped her but they do take at least a few days to kick in and in severe cases, IV steroids might be needed. If he's really not doing well, I would call the on-call GI, because even if you go to CHOP or Mount Sinai, it's going to take a while to get in there.
 
Hello,

Not a parent but I started getting Crohn's symptoms at 15 and was diagnosed at 19 so I hope you don't mind me chipping in.

I mainly wanted to let you know what I've found helpful from a symptom management point of view.. Heat is one of the things a lot of people, I use a heating pad but hot baths, showers, hot water bottles, microwave Wheaties (like a bean bag or cute animal with heatable grains) are all good options. If he is in pain and can keep pain meds down, encourage him to take the meds as soon as the pain starts, I used to be terrible to letting the pain get really bad before taking my meds and I was always chasing the pain then which is much harder than staying on top of it from the start. Ginger tea or ginger biscuits are good for nausea if he can stand the taste, peppermint is good for cramps. Its hard but sticking to a bland diet may also help him and I would recommend keeping a food diary. for some people there are trigger foods that consistently make their symptoms worse, for others eating *anything* sets things off. Personally when I'm flaring almost all foods will make me feel worse.

I also struggled massively with weight loss when I was a teen/young adult and the advice I was always given was to try and get in "hidden" calories, so unlike most people I was encouraged to use full fat cheese, milk, yoghurt, soda etc , I was told to put sauces with everything as this adds calories without making you feel like you're eating loads. I also suck mints, lollies, hard sweets etc that don't feel like I'm really eating but they again add calories. I'm not sure if they are available in America but I use Complan milkshakes when struggling to eat as they have the calories of a small meal, unlike ensure etc they aren't broken down so may be harder for some people to digest but they generally taste better and there are different flavours available.

I hope this sounds OK and you may already be doing this but if he is struggling to eat or he's loosing weight try not to draw too much attention to it, when I was undiagnosed and in the first year or two of diagnosis I got constant comments and input about my weight and it really made me self conscious. Everyone was doing it out of concern, my family in particular just wanted me to eat, but it really made me feel on edge if I couldn't manage to finish my plate. It especially made it difficult when I did start to gain weight because I knew if I lost it again everyone would notice and I felt like I was failing even though it wasn't because of anything I was doing. I would of course let him know that if he needs to talk about it the channels are open though, and that its totally normal as a young person with this disease to feel frustrated by his own body.
 
Hi Staying Positive. I’m late but wanted to say I’m sorry you and your son are going through this. This board is a great place for feedback and support from people with experience. You can pretty much ask anything and someone will know answer!

I’m glad you are pursuing other drs in big markets. We lost time not doing this. My son probably had Crohn’s for 3 years with several medium flares that were attributed to ibs, celiac, stress when we were living in a medium market with decent healthcare but no medical school within two hours. We moved to a bigger city and he was finally diagnosed when he was hospitalized there. From there we were referred to Boston but didn’t know about CHOP which seems to be rocking with innovation. You may not need the top drs but you need a trip to a top IBD center or at least drs who see a lot of cases and interact with other drs (Can’t just assume a gi is in the know).

You may also want to check on age limits for treatment. My son can’t be admitted to our children’s hospital, or have the labs, mre, scopes etc he does regularly when he turns 21 so planning ahead for adult dr can’t hurt.

Hope things turn around soon.
 
I can tell you that at CHOP most GIs keep young adults through college - my daughter switched to Penn at 22 but only because her GI moved. Her GI had said that she could've stayed at CHOP till 23-24, which is when she was due to graduate college (she had to take some time off because of health issues). Her GI even saved appts. for college students around winter break and in the summer, so that she could see them when they were home from college, which was very convenient.
My older daughter has a friend with UC who stayed at CHOP till she was 23. It does seem to depend on the doctor though. My daughter was admitted multiple times after turning 18 and continued having tests like scopes and MREs till she switched.
At Mount Sinai, I believe Dr. Dubinsky sees both kids and adults, but I'm not sure about the rest of her team.
 
Same here we were told chop Gi see them through college
They want them to see an adult doc when they are done and ready to get a real job ;)
So they are only switching once
 
Just a quick update to share information with this group who have been so helpful and really helped us through this.
My son went to ER on Monday 7/19 morning because we were afraid he was getting dehydrated (diarrhea and vomiting since 7/13 and getting worse daily) and he was admitted. Started fluids, anti-nausea and cramping medicine as well as Tylenol (continued w/ 40MG of steroid but increased to 60mg). Bloody stool and vomit continued for a few days and Blood work showed hemaglobin & proteins low and a little anemia so they gave him a 1200 calorie banana bag and lipid bag (IV Nutrition over 24 hours) We were then told to wait for a few days to hopefully get a Biologic approved and maybe start Remicade. IV infusion of Remicade (generic form is Infliximab) given Thursday afternoon. Started to feel better overnight and next day showed more improvement (diarrhea volume (was 800ml per) went way down (300-400ml), less blood, less cramping / pain) Started eating much better all day and getting hungry. He was released from Hospital last night late. Blood mostly gone from diarrhea and vomit way down to 1-2 x a day. Today woke up and felt a little sick / vomit early AM after maybe drinking too much water and we probably let him eat too much yday as he was always hungry. The Dr said NO DIETARY RESTRICTIONS but be smart and listen to his body but in hindsight he may have been excited to be feeling better and we s/have restrained him a bit (but it was so amazing and a welcomed sight to have him hungry and want to eat. Today he is resting, eating less but fingers crossed he is getting better. Thank you everyone for helping! Waiting on CHOP and MT Sinai to see when / if we can get in to see them w/ our insurance.
 
That’s great he is responding to remicade /steriods
Since he is still in the “build up “ phase he may still have vomiting on and off at vet the next few weeks
For my kiddo the vomiting finally stopped after the third remicade infusion

Hopefully he heals quickly abd in 6 weeks this is all a thing of the past
Just regular bloodwork and check ins

Biologics can be truly magically

Hugs to you and him
 
So glad to hear he's feeling better!! That's wonderful news. Do remember that Remicade may take some time to work - some kids respond to it very quickly and others take months. My daughter felt better after 2 infusions but it was really after 4 infusions (10 weeks or so, I think) that she felt significantly better. And sometimes you need to play with the dosing/interval of infusions before figuring out what is right for your kiddo.
But the fact that he's feeling better is very promising!! For my daughter, we did low fiber and low fat foods when she was first diagnosed - easy on the gut. I know for her beef was very hard to tolerate as were certain veggies...well-cooked veggies worked best. Soups worked too. A food diary is a good idea, so you can figure out what works.
Prednisone should make him pretty hungry, so be ready to feed him! It can also cause mood swings, insomnia and puffiness (often you get this round swollen face, called a "moon face" which goes away once steroids are tapered), night sweats and weight gain (which would be good for him). Just wanted to warn you since while steroids at high doses work very well and quickly, they do come with side effects, which is why they're not used long-term. I'm sure once he is stable on Remicade that you'll start to taper.
But overall, this is GREAT news and I'm so glad he is feeling well. @my little penguin is right when she says that biologics can work like magic!
 
Yes agree that biologics can work like magic. My son went into his first remicade infusion, hobbling and couldn't even eat half a banana. He came out walking straight and wanting to go out to a restaurant to eat something! Glad to hear things are going in the right direction.
 
Does anyone have any guidance as to when bloody diarrhea ends and harder "clean" stool begins to form after 1st Remicade infusion and on Steroids?
 
I would assume weeks (at least 6 ) which is when you get the third infusion but possible longer
Some needed to add een (formula only ) and others needed to add een and methotrexate (mtx)
The gut takes a long time to heal
 
Hmm in one of your posts you said blood was mostly gone from the diarrhea. Has it picked up? Volume or frequency or both? Have you made any changes like a decrease in steroids? I imagine he was dropped from 60 to 40 when discharged. Could be picking up due to a steroid taper.
For O it took almost 5 months for blood to stop and more solid BM’s to happen. We had to add EEN to get her to remission and then Remicade was able to take it from there.
 
O.K. If the blood is picking up again, I might mention it to the GI as that could be due to the taper and perhaps he isn't ready quite yet to go down to 40mg's. I do know that many pediatric GI's only do 60mg via IV so going back to 60mg's might not be feasible. He could possibly go back to the rectal therapies and try to control the diarrhea and bleeding that way for a bit.
 
Fwiw Ds was given 60 mg by liquid (he was only 2 and 6) at home for asthma flares .
Definitely let your Gi know what is going on
 
Ok thanks. We called the GI today and filled them in and they asked us to report back tomorrow morning. They said possibility of doing next Remicade much sooner than 2 weeks after checking levels in the blood etc etc
 
How’s he doing now? Any luck with getting into mount sinai or CHOP?
 
In the Hospital mainly for nutrition and hydration as nothing was going in and staying down. Still pretty inflamed and getting 2nd Remicade tomorrow morning. Dr and nurses have been great. Finally got in and seeing Mt Sinai next week for another opinion of care and maintenance. Fingers crossed and saying prayers!
 

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