Lymph nodes & multiple umbilicated nodules

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Josuesmom

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Apr 8, 2016
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Hello, I am new here.

My son just turned seventeen last month. He has been in a major flare up since January 1st this year. Since then he has been put on Lialda, he worsened on it so we stopped it and started 6MP he got even worse so we ADDED Remicade.

He was on both Remicade and 6MP (as well as metronidazole and Steroids) for a couple of months, we finally took him off the 6MP two weeks before his last Remicade infusion this last Thursday.

He has been getting progressively worse (increased rectal bleeding, both bright red and black stool, severe pain, nausea and vomiting) his GI Dr. ordered an emergency colonoscopy that was done on Wednesday, April 6th.

He told me after the colonoscopy that he found "friablity with contact bleeding in the entire examined colon". He said he was concerned with the new finding of "multiple enlarged lymph nodes and multiple umbilicated nodules throughout the entire examined colon" as well as a "redundant colon" (Redundant colon has never been mentioned before and he has had more scopes than I can remember). He also found a new area of Erythematous duodenopathy. He went ahead with Remicade infusion the following morning.

All of these things are new, the colonoscopy before this (Mid January of this year) showed problems different than these.

I am freaking out having to wait for biopsies. Has anyone here dealt with the disease getting worse despite aggressive treatment? I heard "lymph nodes and nodules" and my mind went straight to cancer. The GI Dr. looked concerned and that certainly did not help.

Has anyone here had their child develop enlarged lymph nodes and umbilicated nodules?

He has been in severe pain since the colonoscopy especially while walking as well as having to use the bathroom extremely frequently. I am thinking of driving him to the ER but not sure what they would do for him.

Any help, advice, experiences would be greatly appreciated.

Thank You,
-scared mom
 
Hi and welcome!
I wish I had advice or experience but I don't. I will tag some other parents and hopefully someone will have some advice.

In terms of pain, could you call the number of the on-call GI? They can usually tell you if you should go to the ER. If he's in severe pain, I'd call as soon as you can.

I'll tag Clash, my little penguin, crohnsinct, Mehita, Tesscorm and kimmidwife. Hopefully others will chime in soon.

Do you know what dose of Remicade he is on? How often are his infusions? Sometimes kids metabolize Remicade very quickly and need a higher dose and/or more frequent infusions. Typically they can at least go up to 10mg/kg of Remicade (the standard dose is 5mg/kg) and it can be given every 4 weeks, if necessary.

I really hope he feels better SOON!
 
Maya142, thank you for replying and tagging others who might have some insight.

He has had it at 0,2,4 and 6 weeks, however his GI said that he will be staying at every 4 weeks for the foreseeable future. He is at 5mg/kg
 
I wanted to add - at the ER, they typically check for acute problems - an obstruction or a perforation, given he just had a colonoscopy. They would probably do bloodwork to make sure he does not show signs of an infection or abscess. They would also probably hydrate him and may give him something for pain.

I would definitely either call the on-call GI or even just take him into the ER, if he's still in a lot of pain. Calling the on-call GI to give them a head's up helps, because then they can inform the ER you're coming and they'll be prepared for you.

Good luck!
 
Maya142,

I have called and left a message with GI Dr. on call.

One of the problems I have with him is the fact that he's 17 and tired of being in medical settings and not as truthful as he should be when it comes to really admitting the level of pain he is in. He can't hide the bathroom trips especially not because we have to keep a log due to the bleeding (every single time there is blood now) but the pain he tries to underplay, however I can see it in his face and posture.
 
It's so hard, sending HUGS! I also have a teenager who is VERY sick of all this -- and teenagers are especially good at hiding stuff, aren't they?! I agree, after a certain point, you can see it in how they walk and their expressions, even if they insist they're "fine" (I hate that word now!).

Poor kiddo. I hope the GI gets back to you quickly. It might just be that your son needs a higher dose of Remicade. Kids who are very inflamed can burn through Remicade very quickly. Also, sometimes if there is a lot of inflammation, IV steroids are needed.

Sending hugs and will be thinking of you and your son. Keep us updated if you can.
 
I agree about hating the word "fine" must be a boy thing.

I will definitely be asking his GI Dr. about medications again.

I really hope that I can find someone on here that has gone through a similar situation, I am driving myself nuts here. lol
 
So the remicade dose is still low /frequency high but given he has only been on remicade 6 weeks
He still might need more time for remicade to work
How high a dose of steriods is he on ?
No info on the colonscopy findings
Some don't respond to anti tnf and need a different type of med
Stelera is one
Not sure on simponi
Hope the on call Gi gets back to you soon
Waiting is the hardest
 
Simponi is also an anti-TNF. But Stelara is different - it's an IL 23 inhibitor. It's not approved for Crohn's yet, but should be soon.

Entyvio is another biologic that is not an anti-TNF and is approved for Crohn's. It's not approved for kids yet, but it is being used at our Children's hospital (mostly on teenagers).

I will say that while some kids respond to Remicade immediately, others take a while. It took 3-4 infusions before my daughter felt substantially better. So hang in there...it might just take a while for him.

You do have some room to play around with the dose, which should help. My daughter went all the way up to 20mg/kg every 4 weeks - that is called "high dose" Remicade. That was more for her joints (she has arthritis) than her gut, but it can also be given at pretty high doses for IBD.

There are two other parents I can think of whose kids have also been on dose higher than 10mg/kg of Remicade - Clash and crohnsinct.
 
[[[Hugs]]] It is definitely nerve wracking to get a bit of information and need to wait for the biopsies and an explanation of what it means.

I don't know what's going on with your child but I will say that lymphoid tissue is generally more abundant/prominent in kids and adolescents than adults (think tonsils!). So if this is an adult GI, it's possible that what the doctor saw was not uncommon in kids but rare in the middle aged adults he usually scopes. In addition what's normal in kids could be alarming in an older adult. I don't know what the doctor saw but lymphonodular hyperplasia is normal in children (not sure about teens).

A book (Colonoscopy: Principles and practices states:"Prominent lymphatic nodules can be found throughout the large and small bowel in healthy pediatric patients. They appear as smooth round 2 to 4 mm nodules with normal overllying mucosa. Occasionally larger nodules may have central umbilication or erosion." https://books.google.com/books?id=R...ular lymphoid hyperplasia colonoscopy&f=false


Redundant colon doesn't generally cause problems from what I saw here http://www.riversideonline.com/health_reference/questions-answers/an00239.cfm
 
mylittlepenguin,

He started Predinose at 50mg and tapered off over a three month period, last day taken was March 15th.

No biopsy results as of yet.

Thank You for responding.
 
xmdmom,

Thank you for your response. My son's GI Dr. is in fact a pediatric gastroenterologist.
I'm just very freaked out at the moment....
 
I am surprised they weaned off pred when remicade hasn't taken over yet
I know for Ds he did started weaning till remicade could take over
Not niice to be on pred so long

That would explain the bleeding

Does he see an adult or Ped Gi ?
 
my little penguin what do you mean that would explain the bleeding?

I believe he weaned him off the prednisone because he had him on both the 6MP and Remicade, not sure.

He has a pediatric GI
 
I find the doctor's wording strange-- for example Erythematous duodenopathy. -- means red duodenum (first part of small intestine). Why not tell you that the duodenum was red?

Also, intestinal lymphoid tissue can be enlarged with food allergies, and some infections (H. Pylori, giardia, EBV (mono virus)) and in IBD as well as other issues.

Try to stay calm and wait for the biopsy results. I know easier said than done.

I agree with the others; I would call doctor if the pain is severe pain; you should be able to reach the GI doctor or a covering GI.
 
6-mp takes 3-6 months to reach therapuetic levels
It stops new inflammation from starting but does not induce remission
So if he just he hasn't been on it for that long it can't take over

5-Asa can cause rectal bleeding as a rare side effect
Weaning pred too soon before the other meds have reached therapuetic levels can also increase risk of inflammation still being present

Has he tried EEN ?
Sometimes the system needs a boost
EEN can also induce remission in some without side effects of pred
 
Sorry I can't help you much with the scope results but I do know there was a parent here with something similar. I am sure she isn't still around but if you search some of those terms in the forum search you may hit on her thread.

Was your son just dx'd in January or is that just his most recent flare?

I don't have a lot of experience with 6mp but I seem to recall from what I hear around here that it can take up to 12 weeks for it to build to therapeutic levels. I am just wondering why they discontinued that and steroids before Remicade had a chance to take hold and until you were sure he was at the right dose and frequency.

Immunomodulators are also used with Remicade to help prevent the build up of antibodies so I am also wondering why the GI chose to discontinue the 6mp at this time. I am sure it has to do with the HTCL risk but then why not give Mtx and continue steroids until mtx got to therapeutic levels?

Maya is right for some Remicade works right away but for others it can take months. It took my daughter 6 months to get to a point where we could wean off exclusive enteral nutrition (equal to steroids) or steroids. At one point she was at 12.5 mg/kg and 4 week interval. Some kids just metabolize the drug very quickly plus inflammation sops it up exponentially so early on kids need a much higher dose and frequency. My daughter is in remission now and going every 7 weeks and her dose is 5mg/kg.

As for the unusual discomfort after scopes, I would certainly be calling the on call GI...Very, extremely rare but I have a friend who got a small perforation from her last scope....given the condition of his colon I would be calling.

I know time is short right after scopes but if the doc mentions anything that you don't understand or that scares you, make them explain. My doc knows to expect an email about 24 hours after every procedure and appointment...takes me that long to process everything. They really don't mind explaining. They would rather do that than have a parent freaking out.

Fine teenagers...BTDT...aren't they awesome?

Sorry. I know you came here for answers and we are all just giving you more questions.

I hope the on call, calls back soon!


:ghug: Keep us posted.
 
I was also wondering about why they would discontinue meds when he's not doing well. Typically for severe cases GIs like to use combination therapy - either Remicade + 6MP or Remicade + Methotrexate. I'd also ask if maybe steroids might be a good idea, given that it seems like it's going to take Remicade a while to kick in.

I meant to say this before but forgot - my daughter's last endoscopy showed a "nodular" duodenum and the GI doing it commented that it was much "more nodular" than he'd expect in a child her age (she was 18 at the time). I promptly freaked out and worried about it but then biopsies from her duodenum came back normal.
 
My little penguin,

the first symptom we had of this most recent flare was him waking up on New years day with a blood all over his sheets. They kept him overnight at the hospital to get him ready for a colonoscopy and we were informed of a new flare up on January 2nd. He was only on the Lialda for about 2 weeks in January before the bleeding got so severe that they moved onto the 6MP. Bleeding has been the most "visible" of symptoms during this flare up.

He has previously been on Pentasa for extended periods of time with no issues, this is the first time that he has had bleeding.

As to the EEN he was on it in 2011 we have nit discussed it this time around as it has been quite a ride, with all of the blood transfusions and everything getting worse as the days go by.
 
xmdmom, he actually did explain it in simpler terms, I was just quoting directly from the findings report which has different wording.

He just had extensive stool testing less than two weeks ago and they didn't see any infections.

We have him on such a restrictive diet right now that I just can't imagine that it has to do with food allergies, they have never been a issue. He is also taking a prescription powder probiotic and Boost to help with restrictive diet.

All of you are so kind to take the time to try and figure this put with me <3
 
My son is 19 and he has been on high dose remicade + methotrexate injections. His schedule was at the lowest every 5 weeks.

As far as the scope results, I'll tag Dusty. She's not a round as much but hopefully she'll see this.

So far, my son has been through remicade, remicade + mtx(both at various levels), surgery, and now weekly humira plus mtx. He has yet to reach remission.

He has in the past had enlarged lymph nodes due to his CD seen on scopes and the friability as well. I don't remember anything stating umbilicated nodules.

I totally understand teen boys and "fine". My son is asymptomatic even with active CD but before that I did get a lot of fines when it obviously wasnt.
 
crohnsict,

He was initially diagnosed with Crohn's in the terminal ileum back in 2010.

I should mention that one of the main reasons for not having on steroids for a longer time is due to the fact that he has frequent Gran Mal seizures and Prednisone is known to lower that threshold.

He has Systemic Lupus with the severe rashes that go along with it, perhaps his GI thought that the risk of Staph infection(which he's had) was too high on both medications?

I will definitely ask about increasing the dose.

I spoke to his GI and he told me that if there was another bloody stool (would be his 4th today) to go ahead and take him to the ER (he's needed several transfusions during this flareup) or with increased pain.

Thank you for your response and insight
 
Very glad you heard from the GI and have a plan! I hope you can avoid the ER, but if he needs to go, he needs to go.

I should mention that one of the main reasons for not having on steroids for a longer time is due to the fact that he has frequent Gran Mal seizures and Prednisone is known to lower that threshold.

He has Systemic Lupus with the severe rashes that go along with it, perhaps his GI thought that the risk of Staph infection(which he's had) was too high on both medications?
Click to expand...

I suspect all that stuff has to do with the discontinuing of Prednisone and 6MP. Steroids definitely increase the infection risk. Is he on anything for the Lupus?

Poor, poor kid! No wonder he is sick of doctors and medical stuff! I really hope Remicade kicks in SOON :ghug:.
 
When C was diagnosed his disease was located at the ileocecal valve in the terminal ileum. Although, he became asymptomatic after started remicade the inflammation continued to simmer. We added mtx then moved to high dose remicade every 5 weeks but still the meds couldn't resolve that area. After testing and scopes it was determined that he required surgery because the inflammation was causing malabsorption issues so he wasn't gaining weight and an MRE showed narrowing. So he had an ileocecectomy or small bowel resection.

Afterward he had built up antibodies to remicade so he was switched to humira. So far the humira + mtx has been unable to control his active inflammation although he still remains asymptomatic. So no pain, blood, cramps D or C. He's had two scopes since starting humira one showed pristine bowels but biopsies revealed inflammation and the next showed visual inflammation from surgical site to throughout colon.
 
His Lupus is usually treated based on symptoms. He does take low dose aspirin as an anticoagulant due to the fact that Lupus can cause blood clots. However, we did stop that as of January 1st because of all of the bleeding he has going on the colonoscopies. Which freaks me out because his sister had had 2 pulmonary embolisms at age 15, she is on Lovenox injections. They both have a genetic mutation that puts them at high risk for clots on top of the Lupus for him.

He had a PET scan done (to check about the seizures, and his Lupus) on Monday the 4th and we got the results for that yesterday, I haven't been able to see his neurosurgeon as of yet and I really wish they hadn't sent it to me. It doesn't sound all that great but I have no idea what it means.

He has had 2 brain surgeries for his Chiari and I am nervous about progressive damage to his brain.

I would post a picture of the report but I don't know how to do that. lol

Thank you all for being so helpful and warm.
 
CLash,

Wow, so sorry to hear that he is still not remission. But happy to hear that at least he asymptomatic.

thank you for sharing.
 
It's so hard not to stress during the waiting periods of test to results. I can't imagine all that your son has had to endure dealing with both lupus, CD as well as chiari malformation. I have IST and some of my support groups have members with POTs due to chiari and I know it can be a struggle.

Hopefully, the answers will come quickly and be only a need for med adjustment.

Hugs!
 
Yes POTS is very common with Chiari. What treatment do you receive for your IST? I have had 2 ablations for SVT done in the last couple of years and am currently wearing a monitor again =(
 
I've been doing really well with nadalol. I still have flares now and again but usually only if I totally over do it.

If it gets out of control again, the EP said it'd be a month monitor, anD then ablation but the results for IST and ablation don't seem that great to me.
 
xmdmom,

Hi, he is still sleeping this morning. He only had one more BM last night and it was only a very minimal amount of blood, he begged me not to take him in last night. I told him that the first sign of blood or pain today we would have no discussion about it and go in. He agreed and is still sleeping, I have a feeling he will try his best to get up and moving.
 

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