Managing Fistulizing Crohns without Biologics

Hi all,

I am just curious and interested if anyone has insight into managing fistulizing crohns without biologics. It appears that the default and preferred method of treatment is using biologics.

I am currently on Humira and was on Remicade earlier. What prompted me to post this is the troubling thought of what options one would be left with if someone were to stop using them by choice or lack thereof (unavailability in certain countries or insurance issues).

The literature overwhelmingly seems to refer to biologics as the preferred method of treatment and I am wondering if their inaccessibility or unaffordability is a compromise that one has to live with.

Thoughts and experiences are appreciated.

Hey.

I've got lots of experience with fistualizing crohns. All of it before biologics were around. The inability to treat them was one of the factors that led to my permanent ileostomy.

I'm sure others will be along how have experience with biologics.

Hi DJW,

Thanks for your post. I see in your signature that you were diagnosed when you were 12 and had ileostomy at 19 and I frown sometimes that I was dealt a bad hand. Posts from people like you are humbling. Must have been an emotional and physical ordeal.

Wish you health and success friend.

Thank you.

My experience with fistula also lead ultimately to surgery. In my case it was in part as a result of my own request. We had been working with humira + methotrexate + antibiotics without real success and I was not ready to try switching to remicade just to limit these fistulae that were very localized.

I am still hoping for a way to manage them more "locally". I've seen certain use of radiofrequency and some consideration for hyperbaric oxygen therapy... Now can they be helpful...

Currently, I'm staying the course with draining setons for my perianal fistulas. My GI has recommended I start with the "top down" approach(Humira) to treat my perianal fistulas. As you mentioned the biologics are the preferred choice of drug treatment supported in the literature. I have three perianal fistulas & I'm hoping to continue to manage them with the draining setons. I do have my private insurance approval to support my GI's recommendation of Humira. However, I'm still uncertain in proceeding with Humira if I'm able to manage the fistulas with draining setons...I guess I haven't started using the by choice. Not sure if anyone else is in the same quandary as me?

idlebrain said:

Hi all,

I am just curious and interested if anyone has insight into managing fistulizing crohns without biologics. It appears that the default and preferred method of treatment is using biologics.

I am currently on Humira and was on Remicade earlier. What prompted me to post this is the troubling thought of what options one would be left with if someone were to stop using them by choice or lack thereof (unavailability in certain countries or insurance issues).

The literature overwhelmingly seems to refer to biologics as the preferred method of treatment and I am wondering if their inaccessibility or unaffordability is a compromise that one has to live with.

Thoughts and experiences are appreciated.

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I am in just that boat remicade healed the fistulas totally and immediately but after 9 years stopped working
Tried humira no help using ABs as a short term solution. Had seton placed today.
Starting entyvio soon.
Prior to remicade Flagyl, cipro was effective but those outlived there usefulness and got neuropathy from both
6 mp, Imuran and MTX help some people not me and I don't think they are better than the biologics.
2pcs Of advice do all the natural healing and alternative therapies you can eat very healthy for you. High quality probiotics daily are very helpful if used right
I am following the listen to you gut protocol it helps a lot esp with inflammation but is rarely a substitute for the drugs.
Btw are the fistulas draining or abscesssing? large or small bowel
Mine drains perianal.

@ JayWoodman, I am in the same boat as you are. I have 2 draining setons since November 2013. My CRS said, it is all I need in the meantime to prevent abscess since I cannot make a decision if I wanted to go ahead with the plug or LIFT procedure. For right now, I have decided against surgery and I am happy with my setons. My only problem with the seton is, because it has been there for 10 months now, it is slowly disintegrating, and it has to be replaced anytime soon. I have the rubber thingy but tied instead of the clip that you had. I have occasional swelling even if I have setons, that goes away on its own. Do you experience that too? I am getting paranoid whenever there is unusual pain down there.

@Robrich: Thanks for sharing your experience. My fistulae developed from an abscess which formed prior to my official Crohns diagnosis. They were perianal. I tried Remicade for almost an year without much success. I also had a draining seton placed last Nov and switched to Humira in December upon my new Doctor's advice. Got the seton removed this June. Humira along with increased dosage of 6MP and Lialda seemed to have helped me and the fistulae are almost healed.

I am wondering what would I be up against should I discontinue Humira after the fistulae heal.

I went to Mayo in January and got diagnosed with two fistulas that connect my small intestine to my colon. I had zero symptoms at the time and all my blood tests were in normal range (usually in a flare I have a high CRP and sed rate.)
They wanted to immediately put me on Humira and Methotrexate. I refused.

I was shocked. I went to U of Iowa for a second opinion. He said I could probably live with them until I got symptomatic. He wanted me to do a course of antibiotics and go on methotrexate though. I did not do those things.

(I know, I'm a BAD patient.)

I'm currently doing STRICT AIP paleo (plus dark chocolate) - for the last 10 months, and feel great. I'm working with a functional medicine doctor. My iron levels are going up, my HCL/LDL are better. My CRP and sed rates are normal. Vitamin D went from 38 to 65 with supplements. Ferritin went from 10 in January at Mayo (which the doc said was no big deal) to 40 now. My minerals were all low and now they are normal.

I've had Crohn's for 9 years. The only thing I was on in January was Pentasa. I went off of that and am not currently on anything that is prescribed by a doc, but I take two probiotics (ProbioMax and Prescript Assist), magnesium, Nordic Naturals Omegas, Vit D, and Ortho Moleculars Alpha Base with Iron.)

idlebrain said:

@Robrich: Thanks for sharing your experience. My fistulae developed from an abscess which formed prior to my official Crohns diagnosis. They were perianal. I tried Remicade for almost an year without much success. I also had a draining seton placed last Nov and switched to Humira in December upon my new Doctor's advice. Got the seton removed this June. Humira along with increased dosage of 6MP and Lialda seemed to have helped me and the fistulae are almost healed.

I am wondering what would I be up against should I discontinue Humira after the fistulae heal.

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You would likely be up against a recurrence of the fistula and if you stop humira it likely won't work again. Don't stop as long as it is working and there are no significant side effects. I would choose humira if it works over 6mp as it is more effective.
If you make it 3more years there will likely be more options available.
Good luck

@PolarBear
I had a Ligation of the Fistula Tract (LIFT) performed. Unfortunately it was not successful. I wonder why your setons are disintegrating in 10 months? Mine are at the 9 month mark & the silastic seton loop material that was used appears to be in the same same shape as the day the procedure was performed. Perhaps, you could ask your CRS to switch to silastic loops in place of rubber bands? I did not find any studies comparing the performance of acceptable seton options ( ie. Sutures, rubber bands or silastic loops) but based on my singular experience I am not experiencing any disintegration to date. Does anyone else have silastic loops? I do not experience any swelling at the two current fistula sites with the draining setons in place. The swelling is limited to the third fistula site for which I'm scheduled to have a draining seton & EUA in mid September.

Jay Woodman said:

Currently, I'm staying the course with draining setons for my perianal fistulas. My GI has recommended I start with the "top down" approach(Humira) to treat my perianal fistulas. As you mentioned the biologics are the preferred choice of drug treatment supported in the literature. I have three perianal fistulas & I'm hoping to continue to manage them with the draining setons. I do have my private insurance approval to support my GI's recommendation of Humira. However, I'm still uncertain in proceeding with Humira if I'm able to manage the fistulas with draining setons...I guess I haven't started using the by choice. Not sure if anyone else is in the same quandary as me?

Click to expand...

Jay,
I am no big fan of biologics but my understanding is that setons are more for maintenance and to reduce the chances of formation of new abscesses and/or fistula by diffusing and channeling localized infection. Both the GI's I saw so far and my PCP seemed to think biologics are the best bet to give yourself a realistic chance of healing the fistula. Otherwise, like you said, we are just surviving while the inflammation still keeps feeding the fistula.

idlebrain said:

Jay,
I am no big fan of biologics but my understanding is that setons are more for maintenance and to reduce the chances of formation of new abscesses and/or fistula by diffusing and channeling localized infection. Both the GI's I saw so far and my PCP seemed to think biologics are the best bet to give yourself a realistic chance of healing the fistula. Otherwise, like you said, we are just surviving while the inflammation still keeps feeding the fistula.

Click to expand...

Idlebrain, I'm afraid that is my dilemma...If I'm ok living with the draining setons & accept the fact that it will not heal the fistulas. Rather, management of the inflammation & prevention of recurring abscess formation through setons then I'm holding off on the Biologics for now...