Will my fistulas ever heal?

[Destiny]

Hi all,

I have not posted on this part of the forum before so if similar threads have been done I apologize. Il try and keep my story short and would welcome any help, support and advice. I was diagnosed with crohns in 2006 and later went on to have a right hemicolectomy to remove the problem. Things went well after that for a couple of years and felt for the first time in ages that I finally had my freedom of life back and enjoyed it so much more. This however ended last year when my first abscess appeared. I had never had one before so never thought anything of it until it started causing me pain. After over a year I still hadn't done anything about it and was gradually increasing in size and pain. In the end I had no choice but to get it dealt with. This resulted in me having a seton put in place through my buttock and back out the anus. It was a difficult time for me physically and emotionally as it was all so new to me. The pain was horrible but I comforted myself with the thoughts that it would soon all drain out and with corrective surgery it will all be done and dusted!- wrong! My first seton was put in 7 months ago, my second one 5 months ago and have recently noticed 2 other abscesses filling up. The pain has now become unbearable leaving me unable to move from my bed (where I can't find comfort either). I also have had a colostomy bag for just over a month now as my bowel movements were making the whole situation so much worse. I admit the bag has left me relieved that the agony of BM have gone but the fistulas are leaving me so depressed and find it hard to find any hope and happiness. I have my 4th infusion of remicade next month but still havent noticed any difference. I am set to start another course of antibiotics but everything ends with the same results, nothing! Will these fistulas ever go away or will they just keep coming back? When will I be able to enjoy life with my family again? I just don't see any way out of this pain.

If anybody is going through a similar situation or has any words of advice I would love to hear from you.

Sorry for my rant but it feels good just to let it all out.

 

[AlliRuns]

Wish I had some advice on fistulas healing, but it has been 7 years and counting for me. I just started Remicade as well, hoping it does the trick.

 

[barkbbdog2]

Wish the best for you. When I first started Humira, it really helped my fistula. Then it just stopped helping for some reason. I am on Remicade now, and also have a seton in...neither seem to help. My fistula drains all the time, blood, puss, you name it. If you find a solution let me know...I feel your pain.
The only thing I can think of is that they are putting me on the max Remicade....once a month and "10", whatever that means. I will pray for you.

 

[barkbbdog2]

I sometimes wonder if they should go back to some of the older less expensive meds like methotrexate. I wonder if these TNF blockers work as good as the older meds?

 

[crushingcrohns]

get off the remicade. They will go away

 

[crushingcrohns]

our immune system is not meant to be inhibited. Our bodies are smarter than the medicine people.
You have an infection brewing in your colon somewhere (this is an example to explain something). The infection is there. The immune system can see it but forbid to touch it and destroy it. The body knows that if that infection continues/grows/gets worse/ isn't stopped, the result will not be good.
So there it is.. the infection brewing and getting worse so the only defense the body has at this point because we have taken the route to make our immune system unable to fight normally, the body will not let that infection stay there. It's to preserve our lives. The only way to rid the body of this infection is to push it out...Since the infection can't be attacked, it's next resort is to kick it out of the body by pushing the infection through any pathway that will see it to an exit.

Get it?

 

[Lisa]

get off the remicade. They will go away

I beg to differ, speaking from experience. Fistulas will generally NOT just go away on their own without some type of medical intervention.

As far as the immune system- there are lines of research and thought that show the symptoms we have are caused by Ann over active immune system, and what many medications do is allow for that to return to a more normal level.

To the OP- hopefully you start to see some improvement soon from the remicade.....if your fistulas are that bad, it may just be taking longer for you to see progress with healing.

 

[David]

get off the remicade. They will go away

Someone with fistulizing Crohn's disease isn't going to have their fistulae go away by getting off Remicade. I'm all for boosting the immune system too, but you tell someone to get off remicade and to boost their immune system without giving any specifics. That reeks of terrible advice and our community standards are infinitely higher than that. If you're going to provide advice that is contrary to conventional wisdom, I'm fine with that. But it needs to be very well supported with specific information from reputable sources.

 

[David]

Destiny,

Am I correct that you have two active abscesses that have not been drained? If so, it's important that your GI and surgeon work together to ensure all those abscesses are drained so that the Remicade has its best chance to work for you.

I'm sorry you're suffering so much

*hugs*

 

[Destiny]

Thank you very much for everyone who has commented. Without sounding selfish, it is comforting knowing that others are going through the same thing and I am not alone in all of this. @crushingcrohns and pasobuff, I put off having remicade for as long as I could. I researched all there was to know about it and what I found honestly terrified me, it was hard to find many positives but I became so desperate that I will take and try anything to ease the pain. I have been tempted to just stop but as David points out I would need specific reasons or evidence to show why it would benefit me now to come off it.
@David yes I have 2 fistulas open with seton and 2 new abscesses forming which I'm too nervous to get looked at with the fear more setons will be put in place but I know that I will need to get them checked out.
:sign0085:

 

[David]

I understand your fear, I really do. But it's extremely important that you bring these new abscesses to the attention of your doctor. I suggest calling them today.

*hugs*

 

[Destiny]

I will do David thank you. I will update the post when I know more.

 

[JoFowler]

My experience: I had an abscess form in Sept/12, along with awful stomach pains to the point I really couldn't eat. Had emergency surgery on abscess on Sept.26th, and again on Oct.10th. It went away completely(or so I thought) the week of Christmas and I put the sitz bath away. It flared right back up on Jan.6th(my birthday, not very nice lol) Knowing I had a treatment on the 9th, I endured the pain for three days and after treatment, it went back down.

A couple of weeks ago, it seemed like it was gone so I skipped a sitz bath (do three a day) and the next night between 6:00 and 9:30 it flared right back up. So I resumed regular sitz baths and it went back down. The last couple of days there hasn't been much draining, but I will not be fooled into giving up the sitz bath! LOL

My Dr. wants me to have two more Remi treatments before he decides to put a setan drain in. I have one next week(it was delayed due to antibiotics) and then I'll have one in eight weeks. So I am really hoping everything gets healed in those two treatments. I have found A LOT of improvements with Remicade.

Good luck with everything

 

[crushingcrohns]

I know. Trust me, most people don't agree with me.:rosette1:

The fistula situation... yes you are correct.. I said that wrong. get off the Remicade and you wont get a fistula. That's what I meant to say because you are right, the fistula needs to be treated, either with medication or surgery. Wait almost forgot to mention that prior to the fistula, I got an abscess that I needed to get lanced. WOW... Ever get one of those? what an experience. :frown: Horrible. Anyway, I had surgery, got off the Remicade and haven't had a problem with those 2 problems in years. I can just say what I would do and what I know from my own research and experience with this disease. For me, I went on Remicade, got a fistula. I didn't even know what a fistula was. If you do reading about these suppressing drugs and prior to their development, no one got fistulas. Read about this stuff and you'll be shocked what you find out.

There are so many "lines of research" out there. It's actually rather overwhelming when you first dive into it. What I've read that has been something that has progressed in research with finding a cause/possible cure for Crohn's is the MAP pathogen (comes from cows milk mostly). It seems to be the research that they have found that has made a lead into more research, rather than reaching a wall.
According to research on this & why not everyone get Crohn's if this pathogen is in our milk (& LOTS of other places too.. it's a B**** of a bacteria to kill) is this. It's not that we have an overactive immune system, it's actually the other way around. It's that people with our disease lack the ability to fight off the bacteria that leads to Crohn's due to a genetic defect. This defect makes it impossible to wipe out the bacteria as the immune system does with people who have that strong normal immune system. Our body is trying to attack this bacteria which is why we end up getting attacked instead. The bacteria throws us off pretty much.
Suppressing the immune system is what remicade and humira and ect, the list is long does to people and they are just not safe meds :confused2:and I believe that the benefits do not outweigh the risks/harm they do. I'm sorry, but I better feel golden :luigi:if i'm risking getting cancer, perm. nerve damage, TB, all kinds of infections, some people now suffer from seizures on the regular that they never had before going on remicade, ect and the price tag is disgusting :ybatty:.
The drugs that REGULATE the immune system are within a completely different class of meds. That's what people like us need. A regulating drug NOT suppressing medication like that dangerous expensive garbage. :angry-banghead: As you can see i'm not a big fan of immune suppressing drugs. I know way too much about them that tells me *danger*, toxic chemical not made for human consumption
These regulating drugs are out there and through my research and what i've read, these drugs are going to pretty much not exactly blow remicade out of the water, but they will do much better than remicade and similar due to a more favorable route (oral ), safer (thats a no brainer) and J&J Abbott drug companies that produce these immune suppressing meds are getting greedy. So the price will be another more favorable aspect of the new drugs.

Ever try LDN? It works very well with making our immune system balanced. It's a great drug that's safe, effective and CHeAP as *beep*. Check out my blog if you are curious about any of this stuff. I have lots of good info there that is for you guys, not really for me so much cause i've already read it.

----OMG Another carnival cruise problem on the news. so ridiculous!

ok take care now and have hope for better treatments..

I beg to differ, speaking from experience. Fistulas will generally NOT just go away on their own without some type of medical intervention.

As far as the immune system- there are lines of research and thought that show the symptoms we have are caused by Ann over active immune system, and what many medications do is allow for that to return to a more normal level.

To the OP- hopefully you start to see some improvement soon from the remicade.....if your fistulas are that bad, it may just be taking longer for you to see progress with healing.

 

[crushingcrohns]

David,
haha I feel like you look like that right now. I know dude, I made a mistake with my wording. Corrected it in my last post here. My bad.. YES THE FISTULA NEEDS TO BE TREATED.

& If you look below Dave, I have a link to my blog, go read my reputable research that i've posted there. I'm like a little einstein (but not as smart as him... just driven like him) when it comes to trying to find mainstream conventional therapy or non conventional treatment that will not kill people! That's my mission.

feel good and have a nice weekend:smile:

Someone with fistulizing Crohn's disease isn't going to have their fistulae go away by getting off Remicade. I'm all for boosting the immune system too, but you tell someone to get off remicade and to boost their immune system without giving any specifics. That reeks of terrible advice and our community standards are infinitely higher than that. If you're going to provide advice that is contrary to conventional wisdom, I'm fine with that. But it needs to be very well supported with specific information from reputable sources.

 

[crushingcrohns]

I hope you get relief. I've only had 1 abscess and 1 fistula in my life and I never knew my body could have those kind of issues until I experienced them.
I just remember having to stand in the waiting room for 8 hours or something & then my legs gave out while I slowing walked to the triage station to get reassessed. They didn't assess me right and my pain level was through the roof... I'm talking like 10+. That thing wanted off my body and every hour with it still on my body, the pain just got worse. When you have an abscess lanced, do they usually knock you out for that? They gave me lots of pain drugs.. Dilaudid. and I was told before they started slicing me that they numbed the area. MY *BEEPing* A$$! It was probably the worst experience that Ive had in a hospital my whole life. I felt every cut and screamed bloody murder. Those poor kids, if there were any around, must have thought the worst things. Ugh and of course with the drugs and the adrenaline surges, I feel right asleep when they were done to wake up 30 min later or something to see how much nastiness had poured out of me in addition to the junk they had taken out 30 min earlier. Where in the world was it all coming from!! OMG. I hope that I never go through that again and I hope that once you get cleared up and heal and everything is treated, that you never ever have to go through the pain of them again.

My experience: I had an abscess form in Sept/12, along with awful stomach pains to the point I really couldn't eat. Had emergency surgery on abscess on Sept.26th, and again on Oct.10th. It went away completely(or so I thought) the week of Christmas and I put the sitz bath away. It flared right back up on Jan.6th(my birthday, not very nice lol) Knowing I had a treatment on the 9th, I endured the pain for three days and after treatment, it went back down.

A couple of weeks ago, it seemed like it was gone so I skipped a sitz bath (do three a day) and the next night between 6:00 and 9:30 it flared right back up. So I resumed regular sitz baths and it went back down. The last couple of days there hasn't been much draining, but I will not be fooled into giving up the sitz bath! LOL

My Dr. wants me to have two more Remi treatments before he decides to put a setan drain in. I have one next week(it was delayed due to antibiotics) and then I'll have one in eight weeks. So I am really hoping everything gets healed in those two treatments. I have found A LOT of improvements with Remicade.

Good luck with everything

 

[crushingcrohns]

Thank you very much for everyone who has commented. Without sounding selfish, it is comforting knowing that others are going through the same thing and I am not alone in all of this. @crushingcrohns and pasobuff, I put off having remicade for as long as I could. I researched all there was to know about it and what I found honestly terrified me, it was hard to find many positives but I became so desperate that I will take and try anything to ease the pain. I have been tempted to just stop but as David points out I would need specific reasons or evidence to show why it would benefit me now to come off it.
@David yes I have 2 fistulas open with seton and 2 new abscesses forming which I'm too nervous to get looked at with the fear more setons will be put in place but I know that I will need to get them checked out.
:sign0085:

Don't get discouraged! It's easier said than done, I know. What keeps me from becoming hopeless is to research, read read read. I'm sort of obsessed with it, but I know that if I don't keep putting knowledge in my head about this disease, i'll only know the info that i've been told (which is NOTHING btw) and the info i've read already and that's just not enough for me, it hasn't lead me to getting the treatment I need. I REFUSE to let this disease rule my life.
I have so much fight in me, you have no idea. Get angry at the disease and put your foot down to it & know that your weapon against this illness is knowledge. period. Just learn everything there is to know about your illness so you don't feel as if it has the upper hand in your life...It will empower you, lead you and you'll find something somewhere. There's many many different treatments that can be tried if you are willing to go in certain directions with treatment. I am to the point that I will leave this country (quite frankly our health care SUCKS... we cure nothing, medicate everyone and everything with chemicals I wouldn't give my animal, Medical mistakes are HUGE and kill many and overall - we are a sick nation that is only getting sicker. & that's the sad truth.. FACT, the national statistical data that the US by law has to publish show the truth.. The numbers don't lie and by looking at them, predictions for the future aren't good). I don't mean to speak such sucky words, but I'm just telling the truth.
For me, If I can't get into a clinical trial because the FDA have their priorities all messed up, i'm outta here. I'm just about done at this point. As I read, I am seeing that there is a blocking wall that needs to be broken through on a national level with our government. It's exhausting fighting the disease, do I want to fight the system too? No. & I don't have to because i'll take myself where health is.. because health isn't coming to me and the millions of people seeking it who are under the law & limitations of our health care system.
People are possibly thinking i'm a little bit extreme. Damn straight I'm extreme haha, Mediocre never got anyone anywhere and it takes effort on our parts because that's just the way things have played out over time. For example, I think about the benefits we reap as woman and the walls and stigmas that have been pulled down due to the extreme and fighting women that came before us. Same principle. We have to fight now, put effort and not be so trusting of the ones that we have been told to trust (our doctors). They dont really have the answers. But the answers are out there.
Unfortunately, if you haven't had the treatment that works effectively and isn't toxic , handed to you by now, you'll have to search for it yourself. That's life, but it's not necessarily a bad thing. You learn a lot along the way about a lots of things.
Hangin there.

ps: look into LDN . im a huge fan of it :smile:

 

[crushingcrohns]

the sooner you address the problem, the sooner it will be out of your life to deal with. Plus, the procrastination just leads to added stress and it's not fgood for your body.

Thank you very much for everyone who has commented. Without sounding selfish, it is comforting knowing that others are going through the same thing and I am not alone in all of this. @crushingcrohns and pasobuff, I put off having remicade for as long as I could. I researched all there was to know about it and what I found honestly terrified me, it was hard to find many positives but I became so desperate that I will take and try anything to ease the pain. I have been tempted to just stop but as David points out I would need specific reasons or evidence to show why it would benefit me now to come off it.
@David yes I have 2 fistulas open with seton and 2 new abscesses forming which I'm too nervous to get looked at with the fear more setons will be put in place but I know that I will need to get them checked out.
:sign0085:

 

[crushingcrohns]

I understand your fear, I really do. But it's extremely important that you bring these new abscesses to the attention of your doctor. I suggest calling them today.

*hugs*

I am not sure if an abscess can clear up on its own with antibiotics... My experience was that it just got worse over time. Gotta drain/lance it. Tackling that thing before you are in severe pain is better than waiting.

 

[Sailorluna]

Um... my fistulas arrived before I started the biologics. Since I started them I have not had any further fistulas. It is the only thing that has kept my rectal disease in check. A couple days after my cimzia shot the fistula drainage eases up it is the days before it that the "d" and drainage kick in.

Destiny, good luck with the Remicade. If it does not help maybe they can switch you to one of the others? My surgeon told me that it is not unusual for one to work better for someone than another. I have not tried remicade, but humira only worked for a few months, the cimzia is far better for me.

 

[crushingcrohns]

thats really good! i hope the cimzia keeps working for you. WHat is welchol?

 

[Sailorluna]

Welchol is a bile acid absorber. The part of the body that absorbs it naturally was removed in my resection.

 

[dgg]

Saw your post and wanted to say you're not alone... I feel that way sometimes since I've only met one other individual in person who has suffered from a fistula. It's hard to explain the kind of pain, suffering, and mental effect a fistula can have on you.

I have had a fistula for almost 4 years... one internal opening high up that branches to both sides (called horseshoe fistula) so a difficult one to treat. I have been on remicade for 3 years now and I seem to be feeling much better but I still have some discomfort and drainage. I have 3 setons in place and my surgeon says I no longer have any evidence of proctitis (inflammation) inside so she will likely try a LIFT procedure soon. I know there are no guarantees it will work but I hope so.

I hope you feel better and that remicade helps you. I know there are doctors working on better treatments for fistulas so I'm hopeful that advancements will be made so patients like us can live fistula-free. Good luck!

 

[dgg]

One more thing... I forgot to mention that it most likely will get much better. I was in unbearable pain day after day a few year ago, so much so that I became suicidal and very depressed. I just wanted the pain to go away and to feel normal. The key was finally getting setons in place in the right place (they were originally not placed in the best spot and weren't really working well). I still have some discomfort but nothing like before. Try to imagine a light at the end of the tunnel since it will get better.

I have researched fistulas a lot and I know there are some doctors and researchers in Europe running clinical studies on using stem cells to treat fistulas. Maybe that is something that will help? I have heard from a top doctor in the US who is also doing research here in the US using stem cells to treat fistulas so I am optimistic that one day they will figure out how to treat these. Good luck and try to stay positive and know you are now alone.

 

[copeland]

If you do reading about these suppressing drugs and prior to their development, no one got fistulas. Read about this stuff and you'll be shocked what you find out.

I don't want to start an argument or anything, but this runs directly counter to my experience. My fistulas started well before I was on Remicade, and the only thing that helps them is Remicade.

For various reasons that I won't go into here, I've had to be off Remicade for about 6 months, and my fistulas have never been worse/more active.

I'm not a huge fan of suppressing my immune system either, but I do feel much better when it's suppressed. Maybe it's not a great long term solution, maybe immune regulating drugs are better, but still, Remicade has helped me a lot.

 

[Mike001]

I know. Trust me, most people don't agree with me.:rosette1:

The fistula situation... yes you are correct.. I said that wrong. get off the Remicade and you wont get a fistula. ... If you do reading about these suppressing drugs and prior to their development, no one got fistulas.

... except for all the people out there, myself included, that developed a fistula without ever taking an immunosuppressant. In fact, in my case, the fistula was the first sign that eventually lead to a Crohn's diagnosis. Claiming nobody got fistulas before these drugs is just not correct.

 

[Jaano711]

I also had abscesses and fistulas pre biologicals.

Destiny I know your pain. I had/have severe fistulising Crohn's disease. I had so many abscesses and setons in situ that my undercarriage was more likes watering can than a properly functioning bottom. The abscesses had also moved around the front and were popping up in some, well, hmmm places. Setons provided some relief, but abscesses would find new fronts and just appear. It got to the stage they were so common and painful that I would sometimes be at the doctors 2-3 times a week having them lanced. Was very painful and debilitating.

I when in for a seton change and EUA and when the surgeon came and saw me the next morning I was told that basically it all had to be removed. So in August I had a panproctocolectomy. It was the very last resort as I had been fighting for the past 20years not to go down that road. I was devastated and became totally depressed and home ridden. Not an easy way to live with 3 young children.

The op wasn't easy, and the healing has been long any difficult. The infections round my bottom meant a lot of tissue had to be removed. It is now 7 months post op and I am still having issue with the rear wound I now have a Stoma, my bowel consists mainly of small bowel with 5 cm of colon, so it acts more like n illeostomy, BUT, I am in little to no pain, I don't nearly scream every time I need to poo, and even my awful long term recto-vaginal fistulas are healing on their own.

I was very unlucky as I had an anaphylactic reaction to remicade on my 3 rd infusion so have had to switch to humira, I am still on the humira now as the GI thinksit is the only thing that is keeping my remaining bowel healthy.

I know I am probably a worse case scenario, but I just want you to know, that even so, I am the wellest I have been in over 20years of uncontrolled and unresponsive CD.

I wish you success and hope that the remicade will work for you.

 

[steph0823]

My Crohn's was also diagnosed after a fistula developed. I started remicade pretty much right away and responded so well to it the DR even thought that the fistula was probably healing on its own with no need for surgery! Foolishly I switched to humira for the convenience of it and it didn't work as well . After a year of humira I tried remicade again and had a reaction to it, anti-bodies I guess. I have not been on anything since November and I'm miserable. My advice to you - read up on the meds(I didn't) before you make a decision and then stick with what works!

 

[Jabo]

The day after I started Humira, I got an anal abscess. With each shot abscess would swell and then as time went on would halt its growing until the next shot. After three courses of shots it was a big as a ping pong and very painful. The doctor lanced it, it drained, I felt better. He put me on cypro and flagyl, for a month. It got a lot better but not not all the way down. After I stopped the antibiotics and after each shot it would swell and drain puss and blood. I got more antibiotics and it went down again. This goes on for a while, more than a year until I beg the doctor to keep me on the antibiotics. One might think that I would have just chosen to go off of Humira, but before it I had so many deep anal fissures and my Crohn's Disease was so bad and both improved that I decided to live with the abscess/fistula. After a year I begged the doctor for many months of antibiotics, more Flagyl and Cipro. BTW.. these were nasty. I was depressed, low energy and felt terrible on them, but week by week the fistula/abscess got smaller and smaller. After 4 months the outer opening had finally turned into purple smooth scar tissue. During this 4 months I also used wet wipes soaked in alcohol. I could pretty easily trace the swollen fistula track from the outside of the anus to inside of it about an inch in. After BMs and using my bidet, I would use wet wipes I had soaked in alcohol and would try to get the wipe to the opening of the fistula on the inside. I would know when I was there because it burnt like hell and when I pulled the tissue out there was blood spotting. Eventually, after the outside healed, I could no longer feel a swollen track. Still to this day 4 months later there is still an opening on the inside that can spot blood. I'm afraid that at some it will reactivate but I am hopeful that it will also heal. Other than that there is still no track swelling and no abscess.

 

[Lightblb]

OK, I don't mean to start a gross thread, but I was dx Crohn's in 2011. I get all sorts of swelling and sores in the anal area. I am going to assume those are not fistulas even though they are very painful. They heal quickly. Can someone explain what a fistula would look/feel like to the patient?

 

[Light Blb]

Hey Lightblb, great post! I see you forgot your login name and had to redo. LOL

Light Blb
Marla
Dx 2011
Pentasa and Imuran

 

[jsaba]

10 years of fistula with semi-annual procedures to drain and clean. What to do? Surgeon argues for more radical surgery and Dr. argues for Humira or Remicade. Are the surgical procedures necessary or just leave the fistula to fill and drain or will it just grow? Any experience like this out there?

 

[Jabo]

I replied a few years ago in this thread. Saw it activated and thought I would update. Things are fine now!

First, I am not a snake oil salesman, I have nothing to gain from writing this but instead am taking my time to write this story and share my experience so that it might help another. It very well might not, the following might just have been luck for me, so I make no promises, so please don't accuse me of trying to profit off of people or spreading false hope. My abscesses/fissures/fistula have all healed and for anybody who knows how bad this is, which it is absolutely awful, I feel like if I have any knowledge that could help somebody, it is my responsibility to help them.

I used to apply a homemade ointment each day in the morning and night and after each BM. Missing this schedule would cause relapse. I no longer have to follow that schedule as things are all okay now, but still will apply it a few times a week when things haven't been going so well with my Crohn's and I can feel the anal disease coming back.

Also, and very importantly, during the process of healing I went on medicine that helped me to get Crohn's manageable. Not full "remission" but many days are symptom-free. The regime includes taking Humira and following a strict version of the SCD/auto-immune paleo diet. I have tested meds and diet alone and neither does it for me by itself; it takes the combination of both.

The recipe for the ointment is 1/3 Burts Bees original lip balm in the tin, 1/3 wild oregano oil, 1/3 arnica oil. I am including a screenshot. I can buy these from my local health food store, but I tend to buy them online at iherb or Amazon as it is cheaper that way.

Next, the warning should be noted that 1) this ointment burns, sometimes pretty badly, and 2) in the case of very bad fissures for some reason there is more blood for the first couple of days as it is starting to work, but in my case at least, there was less pain and spasms as I went about my daily work.

I want to also give instructions on how to apply it. If you have some fissures, you can't just go applying this stuff inside directly on top of the fissures. It will be way too painful. Instead, I applied to the outside of the anus and then as I walked or moved I think it kind of slowly worked its way in a bit and that was enough. With more healing I was able to apply closer to the affected areas, eventually even able to apply a little inside, but that being able to apply some inside didn't come for quite a while.

My experience is as follows:
Fissures. This was one of the first signs of my Crohn's. I had these for just over 10 years! They were not small and the pain was excruciating. Doctors I went to wouldn't give me anything that worked which included suppositories/nitroglycerin ointment/pain pills. The doctor would not operate because he was afraid I wouldn't heal because of Crohn's so I was told to just live with it. This led me to on my own trying anything and everything to just get some relief.

Why I think it worked is like this. Nitroglycerin wasn't bad in that in stopped the spasms, but it also gave me headaches and there wasn't a lot of healing. Suppositories helped a little with healing, but didn't stop spasms. The suppositories had steroids in them and that was supposed to be the active ingredient but in hindsight, I think it was just the oily filler that helped because it helped moisturize and grease things up so they came out easier with a BM.

What I think I personally needed (again this might be different for other people) was to first get everything to relax, and then provide nutrients to help heal things; nutrients alone wouldn't do it because the wound was not relaxed and relaxing the muscles was not enough because my body didn't have the power to heal itself correctly. The above ointment allowed that to happen.

First, it has peppermint oil in it as a part of the lip balm. This peppermint oil makes things burn. For me it reminds me of putting icy/hot down there. Not a comfortable feeling at all, but.... it made the muscles relax (for me). Other things in the lip balm helped nourish the skin and the arnica oil helped to speed up the healing.

So again, for me the turning point was to get things to relax and then getting some stuff to help it heal while it was relaxing. In theory I guess you could do this with prescription nitroglycerin and prescription suppositories, but I found this combination cheaper, more wholistic, and with fewer side effects (other than the burning).

Abscesses/fistula: In a way I was a bit lucky because I only had one fistula and it was a milder form, a "transphincteric fistula" that resulted from an abscess being cut and drained. Even in a mild form the shame, pain, and complications with dealing with this still sucked. On a daily basis, I dealt with bleeding and the infection leaking. This lasted for 2 years.
I later on additionally got the second abscess but luckily was able to get it under control before it developed into a second fistula.

In addition to applying the ointment, I also was on antibiotics. This was about my 4th time on antibiotics before I had been on Cipro/Flagyl and it always helped the abscesses, a couple of times after taking the combination for six months it even went away and healed on the outside, but I think it didn't heal on the inside all the way and as soon as I stopped the antibiotics it came back.

I took a 23&Me DNA test and part of my results were that I wasn't a good metabolizer of Cipro, so the last time I asked for a different antibiotic in combination with Flagyl, and I think that really helped me to get it once and for all. (sorry I don't remember the name of the Cipro like antibiotic)

So for taking care of the fistula/abscesses it took 1. the strict following of the diet, 2. Humira, 3. a good antibiotic combination, 4. the homemade ointment. I did try different combinations of these at different times, but it really took doing all of them to heal up.

The reason why I think it worked is that the diet/humira kept me from flaring, the antibiotics helped fight via my immune system and the ointment helped fight things topically. I especially think that a key part was the wild oregano oil and the arnica oil. I think the oregano oil helped to disinfect the area as it is known to have anti-viral/anti-bacterial/anti-fungal properties. And then arnica helped the wound to heal when it wouldn't have healed otherwise.

The process was like this. After a while, the swelling from the abscess would go down. Next the outside would kind of heal over but still sometimes need popping or draining. Then it would heal again and then need popping/draining again. Eventually, it all healed over on the outside but there was still a noticeably swollen track about the thickness of a pencil. As time went by the track got smaller and smaller and then kind of hard and rubbery. Finally, it just disappeared. On the inside what was a hole eventually healed over and now I am left with a pot hole type indention in the inner anal wall, but it has healed over.

It has now been full two years with no more antibiotics and no more signs of abscess/fistula. I waited a while before writing this because there were other times I thought I had it beat, only to have it come back. Now I feel pretty sure about it being gone and can even go a couple of weeks without using any ointment if everything else is going well (that, of course, is hit or miss depending on the state of my Crohn's at any given time). When I do use the ointment now, it is to counteract fissures that are starting to develop, of which it does a good job of stopping them and healing it up.

 

[Linda M.]

Thank you for sharing this. I too have had fistulas. Very painful! !! Removed surgically. Thank God it did heal. I'm in alot of pain in my sides and back now so painful I can't raise my leg high enough to get in the car.Is it Cimzia or Crohn's ???

 

[ronroush7]

Thank you for sharing this. I too have had fistulas. Very painful! !! Removed surgically. Thank God it did heal. I'm in alot of pain in my sides and back now so painful I can't raise my leg high enough to get in the car.Is it Cimzia or Crohn's ???

I would guess Crohns.

 

[Jabo]

I personally have Crohn's, the type that is mainly in the large intestine and leads to lots and lots of trips to the bathroom if I eat the wrong food (which happens to pretty much most things that come wrapped in plastic or a box).

 

[ronroush7]

I personally have Crohn's, the type that is mainly in the large intestine and leads to lots and lots of trips to the bathroom if I eat the wrong food (which happens to pretty much most things that come wrapped in plastic or a box).

I make lots of trips to the bathroom also.

 

[Linda M.]

10 years of fistula with semi-annual procedures to drain and clean. What to do? Surgeon argues for more radical surgery and Dr. argues for Humira or Remicade. Are the surgical procedures necessary or just leave the fistula to fill and drain or will it just grow? Any experience like this out there?

I have had one fistula removed surgically removed . Then two drained and healed on their own.Have you seen your Gastrointestinal Doctor?