Crohn's Disease Forum » Surgery » Biologics and Surgery


11-17-2017, 07:07 PM   #1
Momof2CD
 
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Location: Cape Coral, Florida
Biologics and Surgery

My daughter has Crohn's disease and has been through the biologics and now on Stelara. She has stricturing which needs a resection. In the past and currently, surgeons stopped biologics before surgery and one of her potential surgeons wants her to stop the Stelara 8 weeks before surgery and start again 4 weeks after. Her GI wants to get her into tip top shape by increasing frequency of Stelara and adding Imuran hoping to decrease inflammation and try to get her out of her flare prior to surgery saying new studies indicate stopping biologics isn't necessary. Two great teams with differing opinions. Has anyone had resection surgery due to stricture while on Stelara (very little info since so new) and what did your surgeon say you needed to do? I worry that 8 weeks off any biologic will be a detriment but also fear not stopping biologic will lead her susceptible to infections and leaks too. Don't want my beautiful 18 year old daughter with a stoma if it can be avoided. Help!!!
11-17-2017, 07:54 PM   #2
ronroush7
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I would be cautious about being off of it for a while. I am going to tag Clash, Maya 142, my little penguin
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11-17-2017, 08:09 PM   #3
my little penguin
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Ds is on Stelara as well (just started )
He had surgery (not Crohns related in March )
Was off humira for over8 weeks
Ended up flaring arthritis /Crohns
Humira did not work at all once it was restarted
He tried it for over three months after stopping it
Hence the Stelera

Infection risk is part of the issue
Infectious disease told us if Ds had been on Stelara prior to surgery
He wouldn't have had him stop during surgery


You may want to get an infectious disease docs perspective as well
They may help since they have experience with transplant kiddos /biologics etc....


Can she do een to heal the gut while waiting for surgery and afterwards ?
Since it's a Crohns treatment but heals just like steriods without the risks

The thing with Stelara is it is every 8 weeks
So she would only miss 1.5 doses
Ds was on humira every 5 days at the time so he missed 16 plus doses

Hope surgery goes well
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11-17-2017, 08:22 PM   #4
Momof2CD
 
Join Date: Nov 2017
Location: Cape Coral, Florida
So he flared during surgery? Apparently she has been undermedicated so she is on every 6 weeks with the addition of Imuran. And even then not much seems to be in her system after a blood test. Great idea about infectious disease doctor. I will speak to one. But you said that your infectious disease doctor told you that if your son was on Stelara prior to surgery he wouldn't have had him stop the Stelara. Why is that? That is what my daughter's GI says. Dana could stay on Imuran. How is he doing on the Stelara? Wondering because Dana doesn't seem to be doing better but can't tell because it is probably her stricture that is causing the pain although there is still plenty of inflammation.
11-17-2017, 08:40 PM   #5
Maya142
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Generally, the GI/rheumatologist makes the decision about surgery. My daughter has had two surgeries in the last two years.

Her first one was a J tube surgery, which is an open abdominal surgery - about a 2.5 inch incision through her belly button. It was an urgent surgery, since she was so malnourished and was losing weight fast. We did not have time to take her off her biologic or Imuran or even Entocort.

It took 3-4 days for her bowels to "wake up" after surgery. We were in the hospital 5 days. She did not have any issues with infections, even though she was also on a steroid.

The second surgery, an arthroscopic hip surgery, was done just 3 weeks ago. She was made to stop Cimzia two weeks before the surgery. She flared right after the surgery because she had been off it. I think it was unnecessary to stop Cimzia, but that's what her GI recommended. She healed pretty quickly and is doing well, though her IBD is still flaring (mildly).

In both cases, the surgeons deferred to her GI and rheumatologist and let them make the decisions.

On a somewhat unrelated note, she found the abdominal surgery much harder to recover from than the hip surgery. The hip surgery was a much more minor surgery (arthroscopic vs. open), but abdominal surgeries are tough because you use your abdominal muscles for basically everything.

With her abdominal surgery, she found sitting up very difficult, standing was hard and anything that used her abdominal muscles HURT - like coughing or laughing or even going to the bathroom.

For both surgeries, she was given a pain pump. With the abdominal surgery it was a regular pain pump, for the hip surgery, it was through an epidural. Pain was much better controlled with the epidural.

With the abdominal surgery, her bladder "went to sleep" from the anesthesia and she had to be cathed twice (straight cath) because it hadn't woken up and she couldn't pee. This is quite common but we didn't know about it and she was NOT happy.

For the hip surgery, we warned them that urinary retention had been an issue with M in the past, so they put a foley in while she was asleep, during the surgery. That went much more smoothly and by day 2 it was out and she was peeing.

Sorry, didn't mean to write so much. Good luck with the surgery! Let us know if you have other questions.
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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
11-17-2017, 08:42 PM   #6
Maya142
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I believe Stelara is less risky than anti-TNFs in terms of infection. It's more targeted so there is a lower infection risk (I think!!).
11-17-2017, 09:14 PM   #7
my little penguin
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Ds flared with his arthritis after the surgery
His Crohns started to flare but he was placed on een and 10 mg of pred

He has only had the loading dose and one injection of Stelara
His rheumo is increasing his dose to every 6 weeks
He takes mtx as well
They also added ivig as a bridge therapy of sorts till Stelara kicks in


Infectious disease doc just said Stelara was lower infection risk compared to anti tnf
He didn't state why and since it was after the fact
I didn't ask
11-17-2017, 09:43 PM   #8
Momof2CD
 
Join Date: Nov 2017
Location: Cape Coral, Florida
Very interesting. Thank you all so much. I would agree that Stelara would not be the same as an anti-TNF. The reason the GI does not want to take Dana off Stelara is because here goal is to not only prevent a leak but to keep recurrence out for as long as possible.
11-18-2017, 03:23 PM   #9
Guerrero
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I'd follow the advice of the gi.
Going in the best condition to the surgery would also avoid the surgeon cut too much bowel, especially the inflammatory part that could heal with medication
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