08-09-2018, 09:53 PM   #1
Join Date: Aug 2018

First I just want to say I can tell already that I should have found this forum right when my son was diagnosed.

My son is 10 now and last year he had his first abscess. It was quite large (I thought so anyway) about the size of a golf ball by the time they have him surgery. It was on his butt cheek and the whole process was really painful for him. They said it was staph. I thought it was a fluke situation, but here we are a year later and the Dr.s wanted him to see a Dermatologist because he had what looked like psoriasis on the bridge of his nose and his big toe. Then when I was still looking for a Peds. Derm. he was getting these pimple like puss pockets all over his body that leave little scars.

He had one of those by his bellybutton. It went away and a little bit later there was a lump under the skin there. No white pus visible. It got bigger gradually. His primary just said it is something for the Derm. to look at. Fast forward 2 weeks and it is sticking out of his belly a pen width and is the size of a quarter, red, hot to the touch, and hurts him. Looks exactly like his last abscess only a little smaller.

We go in tomorrow and I'm 99% sure it will be another surgery. My SIL mentioned MRSA. I looked it up and some of the pictures look similar to the little pimple like things. I just feel like there is so much that the pamphlets and things I read when he was first diagnosed that got left out.

The Derm. office didn't have openings until November, but I'm not thinking it's a Dermatologist thing anyways, is it? His gastro Dr wanted them to make sure about the psoriasis looking spots, I get that. But I just feel like after he was diagnosed with cancer at 6 they (primary) think I'm a hypochondriac or something. And his Gastro is 2 hours away.

I was taking him in every week before they diagnosed him with Crohn's disease. He looked like we were starving him and had so many symptoms; mouth sores, high fevers, severe stomach pain, constant diarrhea, vomiting. It still took 6 months and the only reason he was diagnosed was because his Oncologist decided to admit him to the Children's hospital to get it figured out. (It's 2 hours from home)

I'm going to have to take some serious time to read through these threads and get a better understanding of what our life is going to be. They say he can lead a relatively normal life, but it doesn't feel like that so far.

Last edited by CrohnsCancerMom; 08-09-2018 at 10:40 PM.
08-09-2018, 10:59 PM   #2
my little penguin
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Join Date: Apr 2012

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Definitely see the dermatologist
Psoriasis spit could be so many things with Crohns
Especially on the bridge of his nose
Always good to have a good dermatologist in your back pocket
GI would need to see the abscesses
To determine what and why he has them
If itís Crohns related or not

What meds is he on ?
DS - -Crohn's -Stelara -mtx
08-09-2018, 11:35 PM   #3
Join Date: Aug 2018
He was getting Remicade infusions, insurance just made us switch to biosimilars. Not sure if/what the difference is. He had been having flare ups lately also and was on Budesonide for the last 2 weeks.

The Psoriasis spots are almost gone, just a slight discoloration now. He was getting his infusions every 4 weeks when it started and they had increased his dose due to his weight. Now he is every 6 weeks because his levels were high after the increase. I still have his appointment for November, I just don't know if there will be anything for them to see. I have pictures, but they can't go by that I'm pretty sure.

I just wish it wasn't, wait wait wait, see this doctor 3 times then get sent here. Tests, surgery, hospital stay then finally done.

He remembers his last one. The surgeon didn't have any meds prescribed for after surgery. He came out of recovery screaming and crying. The recovery nurse was so mad. She had already paged for someone to get him some pain relief, but it took forever. Then the gauze removal was another horrifying experience.

So ever since it started feeling like his first abscess did he's been super emotional and crying a lot.

I'll keep hoping it's a two time fluke, because he is miserable and I can't imagine if it happens frequently.
08-10-2018, 05:47 AM   #4
my little penguin
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Out dermo uses picture all the time so A we know what is going on
B what if anything needs done next time .

From my understanding they can start you on biosimilars but are not permitted to switch to them once started on the name brand

Remicade should be preventing abscesses from forming
If it isnít then your GI should be coming up with another plan of what to do to prevent future ones
Other than just surgery

That horrid about the pain relief was this at a big university childrenís hospital ?
Poor kiddo
08-10-2018, 04:30 PM   #5
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Your poor child!!! Where are you located? The rules about biosimilars vary by country I think.

In the US, I think they cannot make you stop Remicade to go on a biosimilar if you are already on the Remicade. But if you're a new patient, just starting on a biologic, then they could give you the biosimilar for Remicade.

In terms of the abscess, I would ask to see pain management before the surgery. Or you can see if you can meet with the surgeon before the surgery and tell him that last time pain was a big issue, and can you make a plan together so that your son does not come out screaming in pain. Insist on meeting the pain team and coming up with a plan before the surgery, so your son is not terrified.

We have found that doing so before the surgery ensures that everything goes smoothly after.

Your poor kiddo - that is really horrifying - I'm so sorry he had to experience that. My daughter has had about 6 surgeries and she is always in a lot of pain in recovery, but the nurses are always prepared with pain meds to make it manageable.

If you have Child Life at your hospital, you can also get them involved, to keep your son distracted before he goes in for the surgery.

The goal is definitely to prevent abscesses - if Remicade by itself isn't doing that, then they often add another med, like Methotrexate. That might be a possibility for him.

The goal is to get his IBD controlled so he can live a relatively normal life. It might include infusions, and doctor's appointments, but the goal is for him to be in remission - no abscesses or fistulae.

I would definitely take pictures - our derm is always willing to look at pictures.

And if he gets fever, I'd take him to the Children's hospital.

There is a kind of psoriasis that presents as pustules all over the body - guttate psoriasis. So it could still be psoriasis, though a different kind.

Definitely post on the parents' forum. We have a lot of parents there who can offer support. Hang in there and let us know how it goes tomorrow.
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
08-10-2018, 06:57 PM   #6
Join Date: Aug 2018
Thank you so much for the info and advice! I'm going to get a binder like I read on one of the threads and start writing all the good advice on for quick access and his lab results.

We are in the US. Wisconsin specifically but we go to the Children's hospital in Minnesota. He was on Remicade for about 2 years when they switched him. I had no choice, either he switched or they were going to stop paying for it. Which is a hit and miss as it is. He has only had the 1 biosimilar infusion, the GI said it shouldn't make a difference in his treatment. He had a bad month for accidents but they don't think it is from switching.

They did an ultrasound and L&D today. It was horrible, but better than his last abscess. His primary doesn't think this one wasn't Crohn's related. Maybe it has to do with the pimple things. I'm going to go look up that psoriasis that you mentioned.
08-12-2018, 03:04 PM   #7
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Maya142's Avatar
How is your kiddo doing?

I'm going to tag some parents, to see if they may provide more information. I know Mehita has a son who had an abscess, so hopefully she will chime in.

Tagging: pdx, crohnsinct, Pilgrim, Tesscorm, Jmrogers4, Farmwife, my little penguin

How is your son doing now? I'm really shocked they are doing all these procedures on him without sedation or proper pain relief.
08-14-2018, 04:20 PM   #8
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Join Date: Dec 2014
Location: Portland, Oregon

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Hi there. Sorry that your son is dealing with so much this year. I don't have any experience with abscesses, but my daughter does get pimple-like spots, mostly on her thighs. In her case I think they are folliculitis, perhaps caused by shaving, but I think that she is especially prone to it since she is immunosuppressed. Regular neosporin didn't help at all, but topical mupirocin has worked well for her on the spots.
Daughter E (16) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15, 3/24/18-5/18/18
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Clobetasol for Remicade-induced psoriasis

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