• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Bye Bye Fistula! The H worked!

MikeinBklyn

MikeinBklyn

After 1 1/2 years and two surgeries the weekly Humira injections have made the perianal fistula disappear!

Before the weekly dosage the fistula would open again after 10 days, never making it the 14 days.

I had another fistulotomy in October, it healed very well and all that was left was a small tunnel from the anus to the seton loop, about 3/4", to preserve the sphincter muscle.

I started the weekly injections last month and we waited another three weeks for the H to start really working and it did.

I have been fistula free for two weeks and I feel great!

My life is now normal. Hopefully this will last.
 
dreamintwilight

dreamintwilight

Awesome news, Mike! So many people on here starting Humira for fistulas treatment. It's great to read a success story! :) Enjoy your "new" life!
 
L

luvincookie2001

That is great news. I'm hoping it heals mine too. Luckily I havent had one yet where I needed surgery or even one that extends into the bowel but I have a perianal fistula that just extends a bit into the muscle I think right now. Seems to be getting smaller since the Humira so I'm hoping it will eventually go away.
But yay for you!!
 
C

CrohnsNYC

That is really great. I just started Humira to help with my fistulas and am so hopeful that it will work. I love reading other sucess stories. Gives me hope! Congrats!

Beth
 
P

Polar bear

That's great news!!! How long did you take the Humira? Can you stop once the fistula has closed? Or is this something that has to be done continuously?
 
MikeinBklyn

MikeinBklyn

Polar,

As far as I know one must stay on H forever. I was on Humira for about 4 months and the tract would heal. I was doing a shot every 14 days. At about the ten day mark the hole would open, tear. My doc put me on an every ten day schedule and it closed in a few days and has been closed since, 3 years plus. I have no side effects and I feel great, so I guess I'll be taking H forever.

Good Luck!
 
J

Jay Woodman

MikeinBklyn said:
Polar,

As far as I know one must stay on H forever. I was on Humira for about 4 months and the tract would heal. I was doing a shot every 14 days. At about the ten day mark the hole would open, tear. My doc put me on an every ten day schedule and it closed in a few days and has been closed since, 3 years plus. I have no side effects and I feel great, so I guess I'll be taking H forever.

Good Luck!
Click to expand...
My GI has also recommended Humira for treatment of perianal fistulas. I am extremely anxious about agreeing to treatment with Humira. I appreciate you sharing you experience with Humira : )
 
MikeinBklyn

MikeinBklyn

Thanks to all. It's an unfortunate part of our condition but I (we) live always "waiting for the other shoe to drop" so to say. Although it has been years that the fistula is gone, I still worry that it will come back. A wise woman, my mom, told me "one day at a time".

Good Luck to all of yoose!
 
Cookie

Cookie

Great news Mike! I am glad you are finally getting some results. I started Remicade last month and immediately after starting developed a fistula. I am hoping the Remi will clear it up. Have you tried Remicade for your fistula? I had one years ago and tried to close it with Remicade, but it did not work and I ended up having advancement flap surgery. I have had that surgery twice now and my sphincter muscles are feeling the effects. I do not think I could do another.
 
O

Onellifeliveit

Hi all
I v been diagnosed with perineal fistula today. My surgeon advises me for VAAFT Surgery but gastro says he would treat it with biologics like Humira. What should I do??
I had an anal abscess 2 years back and one 5 months back which was not healing and started bleeding yesterday..which eventually came as fistula in MRI
 
DCCrohns

DCCrohns

Onellifeliveit said:
Hi all
I v been diagnosed with perineal fistula today. My surgeon advises me for VAAFT Surgery but gastro says he would treat it with biologics like Humira. What should I do??
I had an anal abscess 2 years back and one 5 months back which was not healing and started bleeding yesterday..which eventually came as fistula in MRI
Click to expand...
I think it is key to tackle things with a team approach, and find a doctor and surgeon who will work together to tackle things. In my experience, biologics and immunomodulators can heal fistulas for some, but surgical intervention often is required. If you can see if you can respond to drugs, that's always a good place to start. At the least, you should aim to get the inflammation in control with drugs, which can lead to more successful post-surgical outcomes (and many surgeons will not operate unless things are under control).

Having been through many drugs and many surgeries, I wouldn't put off surgery but I would put together a staged plan with your team where you have clear timing and measurements of success before moving onto the next step/treatment.

Best of luck!
 
O

Onellifeliveit

Fighting fistula, swelled joints with adalimumab👊

Thanks DCCrohns
This is wat we r doing now. My GI has now put me on antibiotics to reduce the abscess first and has advised to increase Adalimumab to weekly dose.He says fistula surgeries are not successful in Crohn’s patients so ruled out surgery as of now.meanwhile, knee joints has again swelled..then had to be aspirated and put on steroids. Just wish that biologics keep the things under control now.Keeping fingers crossed.🙏🙏
 
DCCrohns

DCCrohns

Onellifeliveit said:
Thanks DCCrohns
This is wat we r doing now. My GI has now put me on antibiotics to reduce the abscess first and has advised to increase Adalimumab to weekly dose.He says fistula surgeries are not successful in Crohn’s patients so ruled out surgery as of now.meanwhile, knee joints has again swelled..then had to be aspirated and put on steroids. Just wish that biologics keep the things under control now.Keeping fingers crossed.🙏🙏
Click to expand...
Glad you have a team and hopefully the current course of treatment and increased frequency of doses will help you progress.

I would definitely not rule out surgery. While Crohn's patients don't have as high success rates with surgery, if you're inflammation is under control (as good surgeons will require), you can have success. With emerging stem cell treatments, surgical options for fistulas are getting less invasive and more reliable. Surgery may not be right for everyone but, if you aren't able to achieve healing with medical treatment, I definitely (based on personal experience) wouldn't put off carefully considering surgical options (talking to several surgeons and doing lots of research online about approaches).

Best to you!
 
You must log in or register to reply here.
Top