What actually heals fistula

[Elizajp]

I'm confused about what actually heals a fistula.

So many people and doctors say biologics are best. But then other people say that it really just comes down to keeping the inflammation down so they can heal on their own. The inflammation theory makes the most sense to me. Its not like biologics mechanically heal things. Is it just that most people with fistulizing crohns have severe crohns that only responds to biologics anyway? So the fistulas indirectly heal? Or is there something about the biologics that I'm missing that genuinely does something specific on a fistula? I just don't see what that would be.

I've got a lot of new promising treatments I'm trying. I hope they keep the crohns away and the inflammation down. But am I kidding myself that that alone will let the fistulas heal? Or is it really just biologics or surgery?

(For the record, I'm not against biologics. I just have developed a history of various issues with them.)

 

[Elizajp]

And I know there are people on here who have had fistulas heal with LDN, SCD, etc (and I'm on both of those)- but how frequent is that? Is it pretty standard that people who remain in remission get healed fistulas no matter what their method of obtaining remission is? Or is that a rarity?

 

[DJW]

I've only been on Remicade since September. No fistulas. I did have a lot of skin issues under my ostomy wafer that had been there over a year. I saw improvement after one infusion. I can't say with any certainty why it improved but assumed it was the antiinflammatory action of the Remicade.

My fistulas in the past were persistant. This was even before Setons. Drain and pack was the treatment. The cleared after my ileostomy surgery.

 

[Abbynormal]

Hi, I'm really glad someone has posted this because I have had a fistula since July and been wondering how it's ever going to just bugger off! I have been put on azathioprine for it but still waiting the go ahead as their waiting for to test results to check I'm safe to take it. I'm also worried that surgery will end up being the only thing that fixes it! What do you mean by biologics?

 

[Elizajp]

@abbynormal what I mean by biologics are the TNF-blocker drugs like Remicade, Humira, and Cimzia. I'm surprised someone hasn't encouraged you to get on them because everyone says they are the best (or even only) thing that works for fistulas. But they can come with a whole host of scary side effects and risks and lots of times they don't work or stop working after a relatively short time.

 

[Abbynormal]

Thanks for responding... I only got diagnosed with Crohn's disease in September and it's taken ages to get anywhere, I was put on pentasa when they found mild- moderate crohns in my small bowel and then they seemed to take me more seriously when they finally discovered the fistula. Are biologics stronger than the immune supressant then? I hate reading the leaflets that come with my medication... I feel like sitting and crying sometimes whilst reading it! What is the next step for you and your fistula then?

 

[Elizajp]

Yeah I originally had mild to moderate too. Then many years later everything got out of control. From what i understand, biologics are somewhat stronger than the standard immunosuppressants. I've never been anything but Pentasa, steroids, and biologics.

Not sure what the next step is for me! I know how discouraging it can be. I've had this fistula for almost a year now and some days are okay but many days I'm in lots of pain. You can message me if you have more questions because I've gained a lot of experience with it over the year!

 

[Abbynormal]

I hope that they get your fistula sorted for you soon! It's so nice to talk to someone who knows how I'm feeling, physically and mentally. I feel that trying to explain it to others they either get freaked out or just don't understand- which I get cause I suppose I still don't get it so me trying to explain probably just makes it more confusing!! As soon as you say surgery though everyone thinks the worst.. I've never had any surgery before and I'm petrified it might come to that :-/

 

[Elizajp]

I know surgery is scary- and a year ago I never would have considered it. But now it sounds so much better than the pain I've dealt with for so long. And many people have many positive stories about ileostomies on here!

 

[Elizajp]

And I've also found its good to just tell people straight up. I always say "I had this massive crohns flare which caused a fistula, which is when your digestive system forms a pathway to somewhere else. The fistula led to an abscess which causes tons of pain. They had to drain the abscess and I've still got the drains in and they drain and hurt all the time." They don't have to know exactly where the "drains" are haha. And they usually stop asking questions after that and are sympathetic

 

[Tuff]

I have severe fistulizing Crohn's. Early in 2011 my doctor described my fistulas as a bowl of spaghetti, they were so bad. I was afraid to go on Remicade. On Azathioprine, I was fistula free for about six months, then they broke out again. Last May I finally went on Remicade along with the Aza, and haven't had a fistula since. *knock on wood* I don't currently have any Crohn's symptoms, but am still sleeping a bit more than normal. No side effects so far.

 

[Abbynormal]

Haha I like your way of describing it! I haven't had my fistula drained but it bleeds al the time. Thanks Tuff it's really reassuring to know that some medication has worked for you

 

[Abbynormal]

I got the go ahead with the azathioprine today..... Fingers crossed it gets rid of the fistula!!

 

[Robrich]

Asa takes 3-6 mos to work and may or may not close the fistula
Antibiotics cipro/ Flagyl can help close or minimize the fistula drainage.
Remicade and Humira have the best track record healing fistulas.
Serious side effects occur in less than 1 in 200 people. Your decision if the odds are worth it.
Diet helps as well as an adjunctive therapy. The gaps bone broth help me a lot with my fistulas

 

[cheryl888]

I just saw my CRS today to check-up on a chronic fissure I've had....she said I now have a fistula and said I need to have surgery. I didn't realize there were other options to heal fistulas besides surgery (well at least that's what Dr. Google indicated!).

Is there a reason why none of you had the surgery to fix it? This is totally new to me, so forgive me for my ignorance!

 

[Abbynormal]

Hi Cheryl
I haven't had surgery because my doctor said that he hopes medication can help to heal it- if it doesn't then surgery will be on the cards.
Did your doctor say that medication wouldn't work or have you tried any?

 

[cheryl888]

She never even mentioned medication to fix it. I've been using meds for my fissure for the past few months and that has been slooooowly healing. Then today she found the fistula and said I would need surgery to take care of it. She did say she was going to consult with my gastro to discuss. I just felt totally overwhelmed, so didn't ask too many questions at the time.

 

[Abbynormal]

That's really strange, I wonder why she didn't mention medication. Did she say where abouts the fistula is or if it's complicated. I know some people have said that doctors have said to them that because of how the fistula is positioned they need surgery because meds won't work. I've had a fistula since July 2014 and I've been put on azathioprine in the hopes that it will work, but their are other medication that's supposed to be really good at treating fistulas.

 

[cheryl888]

She said it was right near the sentinel pile that I've developed (that is in relation to the fissure) and that it appears to be superficial. She said there was drainage and she took a culture of that. I am wondering if she wants to go right to surgery because of the fissure that I've had for months now that hasn't healed - it sounds like the fissure has contributed to the fistula forming. At least that was my take on it.

I was happy that the fissure was finally beginning to feel better....so kind of felt like a truck hit me yesterday when she said oh the fissure is still there and now you have a fistula too! I was like WHAT?! Seriously...it's been one thing after another these past couple of months.

 

[Tuff]

With surgery, there is a small chance of faecal incontinence. It can depend on the location. I think mine were too close to the anal sphincter muscles. Here is a link with more info: http://www.nhs.uk/Conditions/Anal-fistula/Pages/Complications.aspx

 

[cheryl888]

Now that scares me! Because when my fissure was not healing, we had discussed options and she felt my only option would be Botox - because doing the surgery to cut the sphincter muscle would be too risky for me as I've had 4 children (and episiotomies) plus I have chronic diarrhea...so the risk of fecal incontinence would be high.

She did say she does not think she would have to cut muscle with the fistula surgery.

 

[AFS]

Instead of answering the question, 'what heals fistula', I will answer the question, 'why does fistula not heal or why is it painful?'. The abscess should be able to drain properly. The pain is a result of pus accumulating either in the abscess or in the fistula track and failing to drain out of the external opening. How is the pus then keep getting generated all the time? Even though the abscess has been I&D-ed, as long as you have an internal opening, you are exposing the abscess wound and fistula track to fecal matter and the bacteria. Any wound exposed to fecal matter will create pus. If pus does not drain, it is painful.

 

[droopymonthly]

I'm confused about what actually heals a fistula.

So many people and doctors say biologics are best. But then other people say that it really just comes down to keeping the inflammation down so they can heal on their own.

May I ask what do you mean "heal"? Is it equal to cure or just temporarily become inactive--no yellow liquid out and no obvious symptom?
As far as I know, I really doubt that anal fistula could be cured just by medicine, rather than operation/surgery. Can you show me some evidences and examples? Thank you.

 

[Tuff]

I had multiple fistulas a year ago. Two doctors confirmed that there were at least six openings in my rectal area. I went on Remicade last May, and the drainage stopped very fast. The fistulas have closed completely, so I would consider that healed. I have no symptoms now, but I still have one spot of inflammation, as per my last colonoscopy, so my Remicade was increased to every six weeks. I hope that will heal the last spot I have left. I have had surgery once to clean out an abscess that burst.

 

[24601]

droopymonthly,

I believe since Crohn's disease currently has no cure, that fistulas, as a manifestation of Crohn's, can probably also not be considered cured. But aside from that fistulas can be healed (closed and no longer draining) through medicine alone (article here) - and as others have said Remicade has the best success rate for healing fistulas, though some people can have luck with cipro/flagyl and aza/6mp. The best results seem to be achieved with Remicade/infliximab together with surgical draining or seton placement (source here) - there are some interesting studies on this described in this presentation http://www.slideshare.net/patrick89/lumenal-disease-response-and-remission

This figure is included in the presentation to illustrate decision making for treating perianal fistulas

Hope that helps!

 

[GABoy]

Thank you for the diagram. I haven't had Remicade, but I failed Humira. We're trying 6MP and Entyvio now. I don't like what it looks like if I fail that.

 

[droopymonthly]

droopymonthly,

I believe since Crohn's disease currently has no cure, that fistulas, as a manifestation of Crohn's, can probably also not be considered cured.

Thanks for your information. It is quite helpful. Without surgery, fistula is still there, just become inactive(as you said, closed and without drainage). Whenever the CD flares up, the fistula will come back again.

 

[Tuff]

My fistulas did not coincide with a flare. I had no other symptoms, and a year later, still don't. A fistula track, I believe, is like a cut, once it heals and closes, it is gone. It no longer shows up on MRI. I don't believe it can open up again. Mine never have.

 

[GABoy]

Tuff, I'm told my CD is pretty much limited to the peri-anal region. I do have some mild inflammation at the ileum. When I flare, I abscess and have a lot of peri-anal pain. My fistula just will not close.

 

[Tuff]

GAboy, mine is peri-anal and colon, I worry that I may eventually lose my rectum to scar tissue. The thought of a bag doesn't freak me out though.
I'm sorry you're having a hard time, I know how awful fistulas can be. I posted a link to Books, Multimedia forum about Thalidomide. I was reading about it last night, and they have been having success with it for closing fistulas. Thalidomide was the drug that in the 60's caused malformations in children after their mothers took it for nausea. They are looking at it again.

 

[nhenson]

I have fistulazing crohns, got first fistula in 2010, had surgery x 3 -seton rings, then started remicade 2013 and have gotten no more, colon is now normal and I only have 1 seton ring left.... have remicade every 8 weeks...I am keeping an eye on mongersen, an oral SMAD7 antisense oilgonudeotide (Italy)...has had good results ,but no pateints with fistulas has been in study group

 

[GABoy]

Hi Tuff,

We talked about the ileostomy, but my CRS thinks at this point we can keep the rectum & colon. However, he indicated that there is only a 30% success rate in reconnection in persons with CD. I'm wondering what's the point if I get there? Why not just go ahead with the Proctocolectomy if I have that small a chance of regaining continence? That's why I'm hoping for success with Entyvio + 6MP.

 

[droopymonthly]

I have fistulazing crohns, got first fistula in 2010, had surgery x 3 -seton ringsp

Hi All Friends, may I ask that the seton mentioned by you is the technique "Cutting seton" or "Seton stitch" in the page of http://en.wikipedia.org/wiki/Anal_fistula? As far as I know, "Cutting seton" is still quite popular in China. But from what I understand with discussion with an Australian Surgeon, they are using "Seton stitch" rather than "Cutting seton" in Australia.

 

[GABoy]

My setons have been stitch. I have not had a cutting seton.