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Dx with Fistulizing perianal crohn's disease from Mayo Clinic

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Crohn's Disease
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Posted 6/26/2015 1:47 PM (GMT 0)
I was dx with this in March and have been back and forth on Pred and antibiotics since starting Entyvio in May.

My doc wants to try

Ciprofloxacin and metronidazole combo to heal fissure (I had FISTULA surgery last year and my fissure came back or maybe it never healed up?)

 

has anyone every tried the combo, how did you do on it or did you just try Flagyl?

Thanks,

Posted 6/26/2015 4:52 PM (GMT 0)
Antibiotics are nasty and effective but staying on them too long will cause you all sorts of problems, such as CDiff.
Your fistula may stop draining while you're taking them, but will resume as soon as you stop.
Entyvio is too new and so GIs still aren't sure that the medicine is overly effective in the treatment of fistulas.
Is there a reason why you aren't on remicade? That's the most effective medicine when it comes to fistula closure. I can't give you exact numbers, but I believe it's statistically stronger than surgery, which is often uneffective and very risky because of the strong possibility of incontinence.
Posted 6/26/2015 5:03 PM (GMT 0)
I've failed remicade and humira
Posted 6/26/2015 6:31 PM (GMT 0)
From my understanding with the RV fistula that I developed my GI said that it's healed yes but the fistula tract stays and never goes away, so if you get inflammation again then the fistula likely will too so in a sense it makes the fistula "come back" so to speak though the fistula tract itself never goes away when the inflammation in it is healed...if that makes sense lol...I was really bummed when he explained it to me because I always assumed that when the fistula was healed that meant it was gone, sadly it doesn't work that way....I'm glad I'm at least not feeling the fistula anymore (due to the inflammation from Humira clearing it up)....it sucks that you failed both Remicade and Humira since from my understanding those are two top meds in treating fistulas.

My guess would be your GI wants t try and fight the fistula as much as possible and that's why he's prescribing the two meds together in the hopes that it will work, since you failed Humira and Remicade his hands are probably tied as to finding something to help your fistula.
Posted 6/27/2015 6:53 AM (GMT 0)
I was on cipro/Flagyl for most of the 90s for PA fistula. They work best in combo.
After stopping them the fistula usually came back but not always. It did stay closed for a year or two with the help of the SCD diet.
Eventually I got neuropathy in my feet and had to stop the flagyl
Remicade was great until it wasn't
Been on entyvio since October. Had to add MTX to get it to work and now going to 4week intervals.
Inflammation in rectum mostly cleared up but fistula still active.
Also taking 10 m PRED and augmentin.
Interesting you are at the mayo clinic. What do you think of them?
They have a stem cell fistula plug trial for PA FIstulas going which I have been talking to them about participating
Posted 6/27/2015 4:17 PM (GMT 0)
Hi old chornie, do u have side effects from the 10mg of pred? How long r u taking that for? I'm giving my gut a break from all antibiotics and pred. I've been on entyvio since early May. I'm giving it to sept infusion then I will get off. I feel..../ little better maybe. It hasn't been like a light switch for me, which I was it was. I went to mayo clinic I'm not there now. I loved their GI department android I still call my doc with questions, she is very good. Younger than me and that's weird but I like her a lot!!
Posted 6/27/2015 5:28 PM (GMT 0)
Not much side effects from the pred. At higher doses yes. I have been fortunate as I've taken pred for over 30 of the 50 yrs I've had crohns and no major side effects like osteoporosis, diabetes etc.
I think you can mitigate side effects with exercise diet and saunas with emphasis on hot sweaty sauna as they help clear the drugs.

Once the biologics stop working I believe the disease comes back worse and treatments like Entyvio don't work as easily.
You should consider adding MTX and increasing freq to every 4 weeks for the Entyvio.
I want to give whatever meds I take every possible chance to work before giving up. It often takes a combination of meds and lifestyle to live with this thing inside us.
What alternatives are there once Entyvio fails?
Posted 6/27/2015 7:58 PM (GMT 0)
What is mtx? Yeh I do best with antibioticss and small amounts of pred, yep anything just to deal on Dailey basis.
Posted 6/28/2015 6:45 AM (GMT 0)
Methotrexate injections.
They are easy very thin needle once a week.
Can have side effects at first like nausea and fatigue
Similar to Imuran and 6 mp but different and works faster like 1 mo.
Posted 6/28/2015 12:46 PM (GMT 0)
Imuran gave me pancreatitis , not much works for me. Do u take anything to combat yeast overgrowth?
Posted 6/28/2015 2:46 PM (GMT 0)
MTX is diff than Imuran I couldn't take it either.
I do good yogurt, kefir or probiotics every night
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