03-06-2016, 05:32 PM   #1
SchBraust's Avatar
Join Date: Mar 2016
Location: Iowa city, Iowa
Remicade worries

I just need to get these worries on the table, and I figured this to be the best way to do so.

I'm still waiting for the insurance approval for remicade, but I've started taking imuran as well as entocort. I had a ceton recently put in a fistula on my bottom to keep the area from abscessing, no clue when its supposed to be removed though, and its pretty uncomfortable. I took pain meds initially but have since gone off them with little trouble. I'm concerned about keeping the area clean and currently rinse the area with soapy water after each BM. The question is, do I have to do this every time I have a BM? I also have to keep a piece of toiler paper or gauze up there to catch drainage which is a real awesome thing to have fall out of your pant leg around strangers! hahah

I've taken a health leave of absence from work since Jan 5, '16 to work this all out and the financial strain is mighty. Working as I do in a call center I'm worried about getting sick because someone is always sick at work, and my immune system is going to be shot. I am looking to go back after my first round of infusions. Trouble is that when I do go back I will not have any leave accrued and if I miss there's a good chance of termination.

Am I freaking out for no reason? I wanted to canvas folks here too about taking probiotics while on Remicade and friends.

Thank you all in advance. I am truly happy I found a place where I can get this all out.
03-06-2016, 05:39 PM   #2
Forum Monitor
Clash's Avatar
My son is on combo therapy as well, his meds are humira and mtx. He has been on a biologic and immune modulators through school and now college. He remains the healthiest of the family when it comes to picking up viruses or infections that make their rounds (especially in schools).

I could say this is due to his hygiene and he regularly washes his hands, doesn't eat or drink after others etc but honestly he probably never thinks twice.

My non IBD daughter in college cat chest every bug on campus it seems.

There are even a number of young kids on the forum that are on biologics plus immune modulators and still fine even with all the bugs that go around primary schools.
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara

Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
03-06-2016, 06:11 PM   #3
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ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
I too probiotics while on Remicade and there was no problem.
03-07-2016, 10:43 AM   #4
Senior Member
Madhu's Avatar
Join Date: Jul 2015
Location: Texas

My Support Groups:
I was also worried when my husband was about to start Remicade. We actually moved to a cleaner apartment just for this, I bought hand sanitizers and put them all over the house, always washed my hands before touching him etc. But it isn't so bad actually. He catches a cold like every 2 months now and that's it. Otherwise he is being normal and goes outside. I have just told him to stay away from people who cough or sneeze badly in public. I understand the freaking out, so be calm. It will be okay!

As for the setons, Remicade will help your fistula hopefully and once the healing is nicely done, the surgeon will take it out. My hub had 2 setons put in June 2015 and got them removed last month. Good luck
Hubby dx with Crohn's in Feb 2015, in remission from Feb 2016 to Feb 2017.
2 anal fistulas (setons placed in June 2015 and removed in Feb 2016)

Mild flare in Mar 2017. Remicade schedule adjusted

Current Meds - Remicade 10mg/kg
03-17-2016, 02:09 PM   #5
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Mehita's Avatar
Join Date: Nov 2011
Location: Minnesota

My Support Groups:
Just a suggestion... when my son had an abscess that was draining out his bottom, he wore women's pantiliners to catch the mess. Embarrassing, yes, but you're the only one who will know (and the lovely people reading this post). It wasn't perfect, but the sticky of the liners kept them in place and they were quite absorbent and somewhat
"moldable" to meet his needs.

Remicade has been a wonder drug for my son. He was started on it while inpatient for the above abscess and fistula. By the second infusion he had normal labs and the fistula and abscess were gone. Keep in mind that kids tend to work through this stuff faster than adults, but I just wanted to toss that out there.

Good luck!!
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013

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