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Crohn's Disease Forum » Parents of Kids with IBD » Metastatic Genital Crohn's Disease


11-15-2016, 11:40 PM   #1
ashly825
 
Join Date: Dec 2015
Location: Mobile, Alabama
Metastatic Genital Crohn's Disease

Anyone else's child have this? First let me say that the doctor does agree that this appears to be genital Crohn's(a form of metastatic Crohn's) but hasn't diagnosed her with it as of yet.

My daughter was hospitalized and diagnosed with Crohn's in April 2015 at 11 yo. In May 2015 she had a huge abscess in her perineal area and had to be hospitalized again to surgically drain it. At the time her only Crohn's Drugs were Pentasa (which she still takes) and Azathioprine. From May to December her genital area was riddled with abscesses. All were proven to not be fistulas.


She was off and on antibiotics the whole year due to C. Diff and the antibiotics did not seem to help the abscesses (same antibiotics used for both C. Diff and abscesses). In December the G.I. decided that Azathioprine was just not the most affective and put her on Remicade. Within 2 days of her first injection the abscesses were completely gone. Remicade I've read is one of the most affective drugs for metastatic Crohn's Disease.


Well fast forward to July of this year, bloodwork came back that her body had built an antibody to Remicade and within 2 weeks of her last injection her body had completely destroyed the medicine and she was showing signs of inflammation and another abscess popped up(she was declared in remission in June of this year). She was immediately put on the loading dose for Humira and it didn't take long and the abscess seemed to have gone away.


Well here we are 3 months later and have been dealing with the same abscess that we thought had cleared up in August. The gi put her on Cipro and I have made her do sitz baths and have applied tea tree oil and the combo has kept it from spreading but it's no better either so he put her on another round of Cipro and added Flagyl. He also wants her to see the pediatric surgeon at our local children's hospital.


I love her gi, he is excellent, but I'm afraid that this isn't being handled correctly. Now her bloodwork came back good so I was glad to hear there was no inflammation. I guess I'm just wondering if anyone else has had to deal with this and how was it treated. Thanks!
11-16-2016, 11:47 AM   #2
Maya142
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I have no experience with metastatic Crohn's -- that sounds awful!! Your poor kiddo.

But I do know that Humira can take a while to kick in, even with the loading dose. It took 6 months for my daughter, and that was only after we made the shot weekly instead of biweekly and added MTX.

If you are not comfortable with the treatment, you should get a second opinion. A second set of eyes will help you figure out if your daughter is on the right meds. Boston Children's, CHOP and Cincinnati Children's are the top 3 pediatric IBD centers in the US.

Good luck!!
__________________
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
11-16-2016, 02:28 PM   #3
ashly825
 
Join Date: Dec 2015
Location: Mobile, Alabama
Thank you Maya. He has tested her levels and the Humira level in her body was therapeutic. He just tested it again though to make sure it was still therapeutic and if there were any antibodies but that test hasn't came back yet. I really wish the Remicade would have worked out. It was great. Again, I love her gi doctor, I guess it's that he has no experience in dealing with this side of Crohn's. And aside from a biopsy I don't know what good he thinks a pediatric surgeon is going to do. They can't keep bandaiding the problem, they need to find the underlying cause. Now if it were just the one abscess that refused to go away I'd say fine, drain and/or remove it (which it technically can't be removed, it would have to be a cyst). But it's been multiple abscesses, this particular one is being a booger but it's not the only one she's had. Another thing that scares me is that risk of infection is much greater in Crohn's patients and she would have to come off her Humira for a surgery and that would send her into a flare. So that really should be a last resort. I have read that metastatic genital Crohn's is a rare condition and that's why a lot of people don't know about it. I feel so bad for my baby.
11-16-2016, 06:22 PM   #4
my little penguin
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Boston children's can do an online review of her records and give you a second opinion

Definitely get a fresh set of eyes
We have done multiple second opinions
And our gi welcomes them
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11-18-2016, 02:42 AM   #5
MamiDoll
 
Join Date: Oct 2016
Location: California
First off I am so sorry you and your baby are going through this. 😔
2nd, I like what's been suggested by the posters above me ^^ although I have to wonder how were the abscesses proven to not be fistula? Was an MRI or MR enterography done?

I'd like to add I have this manifestation of Crohn's as well. Probably a much more mild case as Mine are more of ulcerations vs an abscess.I see a team of Gastrointerologists who specialize in IBD (Crohn's & Colitis) The team there has usually called this an "extra intestinal manifestation" of Crohn's. So unfortunately it can certainly still be active even if your daughters Intestinal symptoms and inflammation are improved. That said, Humira works wonders (that's what I've been almost 5 yrs now) Having some topical steroid on hand at the first sign of one coming on has been a go to in addition to oral meds needed for mine to come under control.
I think you should try your best to get her another opinion. This is a rare and severe form of Crohn's that should be handled by an IBD center not just any GI. I was the same I loved my GI but when it came time to refer myself (and drive 2 hrs away) to see and IBD clinic I just had to. Do your best. Also if surgery ends up to be the answer. Keep in mind that the Humira withdrawal (IMO) is more of a cya strategy because in reality Humira stays in the body for months, I don't think she would have a flare up in the 2-4 weeks they typically have patients withhold injections. I don't think it should come to that, especially if she only has one now. Looks like Humira is doing its job. If try to see what another Dr thinks about adding Azathioprine in addition.
11-18-2016, 02:46 AM   #6
MamiDoll
 
Join Date: Oct 2016
Location: California
Oh forgot to add, an IBD GI taking care of a patient with severe manifestations of Crohn's probably wouldn't take his patient off of Azathioprine while taking Remicade. The Aza is supposed to assist in preventing the antibody build up problem. Get that second opinion mama!
11-18-2016, 05:34 AM   #7
my little penguin
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Actually in pediatric ibd they do take kids off aza or 6-mp when starting remicade or humira since the odds of T cell lymphoma is higher whennthe meds are combined .
Some add mtx to the biologic and some do not
11-18-2016, 11:25 AM   #8
MamiDoll
 
Join Date: Oct 2016
Location: California
Actually in pediatric ibd they do take kids off aza or 6-mp when starting remicade or humira since the odds of T cell lymphoma is higher whennthe meds are combined .
Some add mtx to the biologic and some do not
Thank you for that reply. It's interesting. Yes I've never worked with a pediatric IBD specialist. My GI ( Dr Sandborn UCSD) said current studies only show those meds combined have an increased risk of T cell lymph in "adolescent males". There wasn't a greater risk in females. Obviously it's risky and something I'd question with my own two children. However this is also a terrible manifestation of Crohn's especially for a young girl. I'm sure there are alternatives but that's been my experience. Look like she's down to one abscess if I understood correctly soooo hopeful for her.!
11-19-2016, 09:42 AM   #9
malorymug
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Hi. I'm so sorry for your daughter's struggles with crohn's. My 16 year old boy has fistulating crohn's that has developed several abscesses. We've been struggling with them for nearly a year. The plan is to patiently wait for remicade to induce healing, but it is a very slow process.

A few months back we sent his records to CHOP to have another set of eyes look at him. They agreed with the course of treatment and our team seems to be more responsive to our needs since the review. Coincidence? Maybe, but I feel so much more comfortable with his treatment.

Also, I have a team working to manage my child. GI oversees everything and monitors Remicade. Infectious Disease manages the antibiotics (cipro and Augmentin since August). Colo-rectal surgeon manages his seton which is a semi-permanent drain of his troublesome abscesses. And I guess a case manager who makes sure all parts of his care is looked at (mental health, nutrition, physical activity).

I hear humira is another drug that is good for healing fistulas, I hope it can take care of metastatic abscesses as well.
__________________
Mom to: 15 year old boy
Crohn's in stomach, small intestine, large intestine, and perianal disease
Diagnosed April 2014, at age 13

Currently taking:
Remicade 10mg/kg every 6 wks
Methotrexate 7.5 mg/wk
Cipro
Augmentin
Miralax

previous meds:
6mp 50mg
Flagyl
Cipro
Prednisone 30 mg
11-22-2016, 02:52 PM   #10
kernelmom3
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Join Date: Sep 2014
I am SO sorry for your daughter (and YOU...poor mom). I just want to chime in about possible surgery while on Humira. I know every case is different but wanted to let you know that my daughter (who was 14 at the time) had surgery while on Remicade and Prednisone. The head of colorectal surgery at our hospital did her resection himself so I was confident he knew what he was doing. Again, I know that every case is different and hopefully your daughter WON'T need surgery. Just wanted to let you know it CAN be done. Good luck!
11-24-2016, 01:16 PM   #11
kimmidwife
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I am so sorry your daughter is going through this. I agree with the others please have another set of eyes take a look at her. We love our GI too and he is sending us for another opinion at a big GI center.
__________________

Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
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