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My 10 year old has JA and UC

Hi...my name is Beth and my son Bruce has Juvenile Arthritis and Ulcerative Colitis. JA was diagnosed 3 years ago and UC was diagnosed last Feb 2011 wheN he had colonoscopy. UC is in lower left rectum. His Uc started with constipation which they say can happen"..funny all er docs and peeds doc thought he was holding. Hes 10!!!really?..they asked if he was looking for attention...WOW...talk about being alone. When he was younger he had problems with gerd and i went back to his old peeds gastro who did the colonoscopy and tried to get bleeding under control b4 sending him to hospital.He was put in hospital for 6 days last March, 2011. Took canasa suppository nightly, 60 mg of prednisone, 800 mg of Asacol and no eating for 5 days. His bleeding was bad, lots of large clots, blood and coffee grounds...my poor child freaked and my hands shook when calling the dr. Poor Bruce thought he was dying, and the his arthritis started flaring, I took pics and showed Dr. We live 2 1/2 hours away, dr had me send it to his phone... dr said ...hospital NOW! This goes hand in
hand with his arthritis. Stopped bleeding by the fifth day. He took 60mg of prednisone for awhile until he developed glaucoma and he was taken off slowly. Glaucoma gone
and we started Oriencia for JA cuz the enbrel shots were not working.

We have since changed meds for his arthritis. Remicade was the only option for his arthritis except for humira. We needed to get arthritis under control and at the time his UC was nowhere to be seen. He is now taking remicade 300mg
every 3 weeks, celebrex 200 mg daily, and asacol 800mg daily. He hasn't had a flare
since his onset last year. So we decided to cut Asacol in half. It only took a week for
him to flare. He started last Thursday with stomach pains and the next morning he
went 4 times and total motility for the day was about 12 times. Started canasa Friday
night and 30 mgs of prednisone as well and went back to 800 mg daily of asacol.

His bowel movements are better...more snotty mucus and blood but only now going about 4 times a day. His remicade infusion is on thursday march 1st. Pretty sure that this was the result of reducing his asacol. Feel bad but we wouldn't have known.

My question is...Is he that close to having a flare for being on a lower dose because
the flare came on fast? You would think that the remicade every 3 weeks would be
helping!?....:stinks:

So any info would be of great help.
 

Jessi

Moderator
:welcome: Beth.

Oh, I am so sad about your little guy. What an ordeal!! I don't know if that question can really be answered, because we're all so different. However, I hope you don't sit on that thought for very long. I know you're a very loving and worried momma right now :hug:, so it's easier said than done, but dwelling on it can't be healthy. I deal with an epileptic husband, and I can get into quite a panic wondering when a seizure is coming. I've learned to keep it in the back of my mind so I'm always at the ready. Being a caregiver is a tough, but important job.

I have NEVER heard of someone being on Remicade so often. I get my infusions every 8 weeks. And I thought the closest you can make them is every 4 weeks.

Here are a few links to help you feel more at home here:

Parents of Kids with IBD

Remicade Club

Arthritis

Keep us posted on how Bruce gets along. :)
 

Angrybird

Moderator
Location
Hertfordshire
Hello Beth and welcome to the forum. That is such a lot for your boy to be going through and I cannot begin to imagine how it must be for you having to see this happen to him :hug: Jessi has mentioned the sub forums that I also think would be of a great benifit to you and I have also not heard of Remi being given so often either, has the doc said why the infusions are being done this way? I would also ask him about that flare up.

I do hope that things do soon improve for Bruce, please keep us updated on how he is getting on.

xxx
 

David

Co-Founder
Location
Naples, Florida
Hi Beth and welcome :)

My goodness, I'm so sorry to hear what Bruce, you, and your family are going through :( My heart goes out to all of you.

In addition to the links provided above, you may want to check out our enteral nutrition forum. Since Bruce is still having some problems, it may be an option to help get things under control. In the pediatric population, it can have as high of remission rates as prednisone without all the side effects.

In addition to that, have you had his vitamin D levels checked? If so, what were they? If not, I would suggest getting them checked as people with IBD are commonly deficient and proper supplementation can help with arthritis type symptoms.

And finally, have you tried eliminating foods like gluten and dairy? Is he on any sort of special diet?
 
Hi thank you all so much for reading my story on Bruce. Getting feedback is so important. Every person with this illness along with Juvenile Arthritis is different. So to answer some questions you all have asked me.

Bruce has no allergies to wheat, gluten, dairy and he was tested for quite a few things when he had his colonoscopy and endoscopy.

Bruce has always "known" what he wanted to eat. All his life it's been softer foods and he's not a big cookie/sweet kid. He doesn't care for a lot of foods. He just looks at it like...oh ya I have to eat. Right now he's been eating mashed potatoes and toast.

The canasa suppositories nightly work very well with his UC. Still a bit of blood but much better. Bowel movements are still a bit snotty but the mucus is starting to turn white...which is a good sign. He only had to go twice today:biggrin: so the little cocktail of meds seems to be helping him.

When he was first diagnosed 3 years ago for Juvenile Arthritis...his actual diagnosis is Juvenile Spondylitis .....it falls under spondyloarthritis ....we start with the typical protocol. NSAIDS first, then prednisone, then MTX then Enbrel, Oriencia and now were on Remicade. Some kids stop with one drug or take all drugs listed. NSAIDS and Prednisone did not help his joints so we moved onto MTX, which did not help and gave him brain fog...the harder drugs seem to stop working after 5 months. His peeds rheumy feels that his body responds well to the drugs but after 5 months it finds another way to go around the drug hes taking and then it just stops working. We
started remicade infusions every four weeks. We were taking remicade for his
arthritis. Every 6-8 weeks for UC kids but when arthritis is involved that needs to be
under control and remicade is taken every 4 weeks. In October 2011 , his remicade
started failing slowly, UC under control but joints, back and stiffness was returning and
he was having more bad days than good. By December he was in his wheelchair and
needed an increase in dosage and frequency was now every 3 weeks. Remicade was
still not working at 100% but when started on celebrex every day made him feel much
better and still feels good...has some swelling but not pain, the UC still under control
until last week. We have at this time only one more drug to try, humira. And that's it.
So the remicade is given until we can't use it anymore. With his track record for
meds failing we can't take him off remicade too soon. If we start humira and stops
working in 5 months like the rest of the drugs...then we have nothing for him to take
as of right now and that would be bad.

As a parent there is some concern due to the link between JIA (spondylitis) and cancer and even more so when a child has UC added. I don't think too far into the future ....well thats not true, at least i try, but...it's still in the back of my head. I gave him 1/2 his dosage of asacol for a week and a week later he has a flare, but hasn't
had one since onset. Both gastro and rheumy speak to each other about Bruce. since
this is his first flare from onset I don't know what happens to other people who have
UC and cut meds in half or stop all together taking there meds or do they use the maintenance drugs when needed...and yes everyone is different but it's good to ask
:ybatty::ybatty::

Oh for David his bloodwork is taken every 3 weeks and his D has been checked along with everything else....
Wow lots of thoughts there....
Thanks in advance
Beth. Bruces mom
 

DustyKat

Super Moderator
Hi Beth and :welcome:

I'm so sorry to hear about Bruce and all he is going through...:hug...We have another Mum here, there may be others but I'm not sure, whose child has JRA and Crohn's... AZMOM.

So the Celebrex he is taking is not contributing any to his gut issues that you know of?
I understand what a delicate balance it is with needing to control two autoimmine diseases and at times you may have to use one drug that is contraindicated in the other for symptom control.

Why did you start giving him a 1/2 dose of Asacol?

It is hard to say what happens when you stop taking meds. For some, they continue to do quite well for some time without meds, for others, they flare quickly. The idea of the maintenance meds is that they are taken for an extended period of time, as in years, in an attempt to keep the disease process under control, just as a prophylactic is used for an asthmatic.

You certainly have a lot on your plate and are doing a wonderful job! I hope the Remicade continues to work for Bruce for some time yet, bless him. Good luck!

Dusty. :heart:
 

Jessi

Moderator
Thank you for explaining all of that Remicade business to me. That really clears it up. :)

I have Psoriatic Arthritis (PA), UC, and Psoriasis, and the Remicade seems to only be doing the trick for the UC. The PA bothers me only slightly right now, but the psoriasis has been flaring. Remicade ideally treats all 3 diseases. Maybe I need to move my infusions a little closer together for full affect.

NSAIDS are really tricky, because they are usually very helpful for arthritis, but they are a BIG no-no for UC and Crohn's. So I'm happy that the NSAIDS weren't working for Bruce. That could have turned out badly.

Humira may not be the only thing left for long. There are a few drugs being tested that may soon get FDA approval. Also, have you looked into Cimzia? Or Tysabri? There's also a very exciting treatment called stem cell therapy.

It sounds to me that you are doing a fabulous job of taking care of your little guy. My heart certainly goes out to you. :hug:
 
Well...as a follow-up. We saw his Peeds GI Nurse practioner...Last Thursday, the 1st. His bowel movement that morning was once...and was starting to form...YAY! Not so fast. He had his remicade infusion that day too...Next morning...7 times he went between 7am-9am..total for the day 15. Was back and forth on the phone...Dr thought it was something bacterial, C-Dif? Came back clean...HMMM. Yesterday morning no stool but just blood. They were going to admit him but there was no beds! Really? OK so I say...why not do 60 mg of prednisone, liquid diet and still using Asacol and Canasa. This is what you do in hospital, right cuz its what we did on onset and weird thing is we were in hospital at this time for this last year, Weird...So NP calls Dr. He says OK...but to bring him in if we get nervous and if they have a bed. So far today hes gone 7 times. And stools look like theyre trying to form and not as much blood but still alot of mucus. But Im concerned that we are going every 3 weeks for remicade, he was a bit better and a day after infusion he gets worse...Dr even said it, thought it was odd too. IDK - a bit frustrated.... they told me to continue with celebrex, both Docs, REALLY! Since my peeds Rheumy Docs nurse,didnt call till Friday(yesterday) we decided to stop the celebrex last week. Each Doc wanted me to call other doc to get approval - Really? If we go to hospital... Doc's NP says he wants to scope to see if hes bleeding from somewhere else? Im OK with that if hes still bleeding. 60 mg is what he needed to calm his belly down last March...and 5 days with no eating but ice chips!...Just worried that the remi stopped working...its been 2 days without food and not alot of change. just about 4 oz of broth and ice chips and Gatorade non colored. Very glad his dr and nurse practioner are on call this weekend. So far Bruces spirits are up. He started this morning at 4:30 2 times and then his wrist was throbbing (thats a new joint)...So thats another reason im concerned. His Ulcerative proctitis is arthritis related, never know when a flare is going to happen...sorry saying it again...his remicade normally works. Now that hes on 60 mg of prednisone, i have to get eyes checked...his pressure gets too high and he needs drops for glaucoma.AAAUGH! OK thanks for letting me vent. My hubby is at work all day, so I really havent talked to an adult :) Cant wait for a glass of wine and my husband to come home.
 
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