successful fistula repair- is it possible?

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Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3432
   Posted 6/22/2009 3:36 PM (GMT -7)   
Hi everyone- I generally post on the UC forum, as that is my official diagnosis. But I know fistulas are much more common in Crohns. Anyway, I've had one for going on 2 years now- it's a small hole, right outside the vaginal opening, on the underside of it. It resulted from an abscess that burst. I've held off on surgical repair for a number of reasons- I've heard that very often they return, especially if your IBD is not under control. And mine really isn't- it's not horrible, but bad enough so I know it's there! Another deterrent is that I figure I may have to get a total proctocolectomy at some point, & I figured they could fix it then. I always thought why go thru an unnecessary surgery if I have to get the whole thing taken out anyway. But it's getting pretty annoying. Have any of you ever had surgical repair of a fistula, & it's worked? By that I mean the fistula never returns. I'm on the meds they use to treat them, & have been for a long time now. But it seems to be getting bigger! Sooo.... any feedback?
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3432
   Posted 6/23/2009 8:14 AM (GMT -7)   
I'm just bumping this up- no info, anyone? Please?!??!?! after reading up on fistulotomies, I'm not so sure I want to try it anyway- it sounds horrible!

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 6/23/2009 8:26 AM (GMT -7)   
Before I was diagnosed, I had what every doctor(I saw about 8, including surgeons) told me were hemis. I finally went to see a proctologist who specialized in laser surgery. It was immediate relief. Of course in the follow up appointment, my Mom told the doctor that she had CD, and you could see the light bulb go off above his head. "That's what this is". It wasn't hemis, it was fissures and fistulas, and I was officially diagnosed as a CDer. But the fistulas and fissures never came back. I have never heard of anyone else having laser surgery, for hemis or fistulas. But this was almost 21 years ago, and it worked like a charm. The doctor was one of those guys who flew all over the country with offices in major cities. Of course he retired long ago, and has since died, but as far as I know no one else pick up his type of expertise.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


rovin1959
Regular Member


Date Joined May 2009
Total Posts : 159
   Posted 6/23/2009 2:20 PM (GMT -7)   
Seems like all the good ones are gone. where are the doc's who listened and relied on pt's hx to dx!!!!!!!!!!!!!!!!!!!! Golly, i sound old.
Mary Lynn


HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3130
   Posted 6/23/2009 2:54 PM (GMT -7)   
Eva Lou...I would have to say my answer to you depends on where the fistula runs.  My fistula was anal area to skin.  I had a seton placement and I have not had a fistula since (over 5 years).  That being said, I was told that people with fistulizing CD should always expect to get more.  I don't see the same fistula coming back, but I suspect I have another developing in a slightly different spot.
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3432
   Posted 6/23/2009 3:02 PM (GMT -7)   
thanks for the reply- I think mine is close to a perianal fistula- it runs from my rectum to right below my vagina. Not in it, thankfully! but close. I'm hoping I can try a seton... god, who would ever say that?!?! haha! Now I just have to get in gear & decide whether or not to go see the surgeon. Do they do many tests to see the fistula track, many dyes, scans, scopes, etc? That's what I'm dreading too, the pre-op stuff. It's such a hassle!
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/23/2009 3:41 PM (GMT -7)   
They're talking about putting a pig tissue plug in mine, but apparently it has a low success rate in Crohn's, even in people who are on anti-TNF medications. I don't know what the success rate is for people with UC.
Co-Moderator Crohn's Forum.

New meds thread


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 6/23/2009 4:30 PM (GMT -7)   

From all I've read and been told, the type of fix depends on where the fistula starts in the rectum.  Fistulectomies are successful because they cut the whole thing open.  Longer healing process, but the fistula is gone.  If the fistula starts too high up in the rectum, a fistulectomy would cut through too much sphincter muscle and leave you immediately incontenent (this would be me)  sad   

My doc says fistula plugs have a 30-40% success rate in CD but they are non-invasive and you can try repeatedly (if you have the money and don't mind risking abscesses!).  My doc says my option is the advancement flap procedure, where they cut a flap of tissue , fold it over the fistula hole, and sew it closed.  Works really well in non-CD but only 70-80% in CD (our tissue just isn't normal and doesn't heal well).  At this point in my life, I don't like the odds, so I will keep my nice. friendly setons.  They really work even though they do have challenges (like keeping them clean -- a much discussed topic in previous posts).   The advancement flap is an option I may take in the future.

Also, there isn't any prep for a seton placement.  It is all done in the OR.  If they ask you to use an enema beforehand -- DON'T!  I did and the liquid just shot out of the fistula and burned like crazy!  They clean out the rectum while you are out anyway, so you don't have to do anything except show up.  They use thin wires to trace fistula tracks, and dyes and imaging too -- but you will be out cold so who cares!

Hope this helps!


Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


1lesssufferer
New Member


Date Joined Mar 2015
Total Posts : 7
   Posted 3/11/2015 1:40 PM (GMT -7)   
Lets talk fistula, abscess and un-necessary surgeries!
I can tell you from my personal  experience with these little devils.
Most people live with fistula and you would not know, because they will never tell (embarrassing).
If you have an abscess/fistula, you already know somewhat of what you are dealing with. You probably been to the docs. and they already had told you that they will not go away on their own and surgery is the only way to correct it.
I have read countless stories of surgeries that seemed to work, then years later it came back. Does this not raise a big ? to everyone. Why are doctors so eager to cut out a problem, instead of getting to the root of the problem?
I will tell my story now and then continue my finding at the end :thumright:
[B]about a year and 3 mos. ago[/B], I went for a long 10day elk hunt. I walked Co mountains (which are high and big), about 5-15 miles a day. After I got home from the trip and 2 weeks later, I felt a bump just above the anus. I diagnosed it as a hemorrhoid, thinking all the overexertion during the hunt did it and treated it as a hemmi.   It kept getting bigger and bigger by the hour and couple days. I ended up putting ice on it and it finally popped! Oh what a relief it was. I kept reading diagnosis and decided I had a thrombosed hemorrhoid. I still doctored it some, but then it subsided and just puss once in a while. I worked and all was good, with exception of a small deflated bump and hole. Fast forward to 2 months ago today (elk hunting just finished again) and the hemorrhoid re-aggravated it again :frown: and back to pain again. I bought every hemorrhoid natural cure there was. Nothing helped. The bump filled and would not pop. I would not go to the doctor for the life of me (lol), as I felt millions of people have them and there is not much they can do. Well the pain came so bad, it hurt to sit, to stand, to think about it and the worrying thing happened again. All I could think was, it was butt cancer or something bad like that. I started researching and self diagnose myself again. Nothing worked, so I took a few weeks off work, as I could not function at all. The pain also gave me abdominal pain, pain near my scrotum, headaches and nausea. My mom and wife begged me to go to the doctor and get it checked, [B]SO[/B] I made an appointment for 4 days later, but in the mean time I researched like I never did before. I checked all the things I searched before and I used the back door of the internet and finely found a misdiagnosis website. It said, a lot of people think they have a hemorrhoid, but actually it is an abscess/fistula (which is different than a hemorrhoid) and these are the symptoms. It described it to the T. I got a camera out, took pics. and studied (finely) it and realized it is not a hemmi. It is not in the anus, it is just an 1/8th in near it. WOW, now I had something else to research. I read and read and scared myself way worse than before. All I could read was, operate...operate...operate, painful recovery...painful recovery.... painful recovery! What can I do, I told myself. I studied and studied, read forum, after forum and then my doctor appointment was here. So I go in knowing to the T, what I have. I sit down with the doc. and he gives me an examine. Yep, you have a fistula (which sometimes abscesses) and the only thing to make it go away is surgery. SO he wanted to schedule me to go see the surgeon and surgery is the only way :mad2:! He told me, he is a doctor and not a specialist in this. [U]Now let me tell you, just a little bit of my background, before I go on[/U]. My mom worked for Rose Hospital for 28 years of my life. I had the best of the best healthcare, during that time (I was even born there and talked to the nurses that helped delivered me, until they retired). Then corporate took over (15 years ago) the hospital and my mom retired and moved to another state for retirement. All my contacts (her friends), also left or retired. I lost all benefits, of my mom being in the medical field, so I was left to fend for myself. I got health ins. and really never needed to use it in my 20's and early 30's (I am 43 now). In my late 30's, I fell off a ladder and got a sciatic problem (but not knowing what it was), I went into KP and the doctor scratched his head and said, we will need to open you up, to see what it is. What the F$^&*, lets first look at other options (I thought to myself), but his only answer was surgery. I left and went to a chiro, who ended up taking an x-ray and found the problem. Also found out, to never get surgery to just diagnose a problem and surgery should be a last resort! I lived with it and went to the chiro, until the problem subsided and it did. Wow, if the doctor had his way, I would of been operated on. I lost all respect for doctors, from there on out. I learned real fast, doctors of then, are not like the doctors of now = now is, treat the problem, not the source of the problem 1st.
[U]Ok, now lets fast forward, back to the fistula[/U].
Why did this doctor not give me alternative solutions to try first? Why is surgery always the 1st and usually only option from doctors these days? $$$$$$$!!!  Lets get to the root of all causes, rather than operate and take care of the ? problem. All these people who went and got the surgery and the fistula came back years later or this is my 8 surgery for this.
For me, why did the doctor not even give me 1 other solution to try first? Heck, he wouldn't even give me pain meds or antibiotics.
I came home and researched home remedies for fistulas and even started telling some close friends/family members of my problem. My friends daughter had a bad one (just like mine) and went to the doctors, which said the same thing = operate only. They said no to surgery and went to a self help natural healing doctor. He dosed her with oregano oil on the bump, hot sitz and a natural antibiotic. 2 weeks later, major difference. 2 months later, completely gone. My friend took his daughter back to the same doctor (who recommended surgery only) and the doctor said, wow its healed, how did you do it, so they told her. She said she was going to tell everyone about the self heal, BUT I CAN GUARANTEE they did not tell anyone. Medical Doctors vs. Natural Healing Doctors do not like each other and do not agree with each other. Its about the $$$$$$$$$$$$$$$$$$$$$$$!
So after researching the best solution to my problem, I decided to try to get the new abscess (of the old fistula) to pop again. I started with tea tree oil. Yes it burned (could call it cooling type of burn), but I gutted it. After the 2nd night, it finely started oozing, not just puss, but a little bloodish clear liquid too (just like others said it would do). Tea tree oil is a natural antiseptic and kills bacteria, as well as heals. Now, I have to heal from the inside out, as well or it will just come back. I took a natural oregano pill, which is a natural antibiotic. I also started a suggestion of ghee teaspoon (dries up the puss, in most they say) twice a day. The healing has begun. The pain is now bearable down there and I can function again. Everything I read of this remedy, is working just like they said it would. How could thousand of people who swear by these remedies, be wrong!?! Why did my doctor (and others) only suggest surgery only? Why have people had multiple surgeries on this, all to have them re-occur again? Why have a lot of people gotten the surgery and then it got worse (even incontinence happening) later down the line. How about the people who had the surgery and now they have a life long problem like incontinence or even resorting to now having a colostomy. Wow, a fistula, now turned into a life long problem. Wouldn't it just been better to live with it, as long as you could calm it down, naturally. Or better yet, how about treating the source and a lot of times the body will correct itself. I have read countless horror stories, most which involved surgery or complications or the horrible pain of recovery. [B][U]My feeling is, the problem came naturally, it can leave naturally too[/U][/B]. Now, I know everyone is different and not all will follow the cure exactly, even if it does work. I know not all cures, help curtain people. But at least try, what can it hurt anymore than you are already hurting. If the pain and situation gets so bad, you can not see straight and you can not get out of bed, then surgery is the [U]LAST RESORT[/U] and [U]should NEVER be the 1st choice of resolving an issue like this![/U]
Now if it is life or death situation and surgery needs to be to correct it, then do it without hesitation.
What I know about abscesses and fistulas.
#1 doctors will have you believe, the only way to take care of it is surgery. Plus doctors will tell you that it is [B]almost[/B] or can threaten your health.
#2 some people live many years with bad one's, without treating them and living through the pain, but they have not died. Which means, most likely it will not kill you.
#3 surgery most likely will not deal with the real problem = meaning it will come back.
#4 ([B][U]and this is a biggie[/U][/B]!!!). Where did it come from and why do so many people suffer from it? An ingrown hair could of been the starter of it and  can get infected and become an abscess. Specially down there, it is detrimental to the healing process, because of all the bacteria (that is constant down in that region) down there. If any of you know what the definition of an abscess is, then you know that area is trying to fight off an infection. It does not just appear for no reason. All diagnosis of it will say rare causes, crohns disease, digestive disorder, ulcerative colitis, ibs, ibd, etc...etc... etc.... Remember the term is RARE, not majority of cases! No matter what, it did not create itself for no reason, but it came naturally, it can leave naturally (with a little help).
#5 I am so sick of what our medical practices have become. I am so sick of the doctors wanting to operate 1st, instead of natural remedies 1st. This can be shown from all the people who told the doctors of natural remedies that worked for this and they fail to want to treat with the natural remedy. It goes in one ear and out the other and then the mums the word. Now, that is corruption in the medical field. Makes me feel that an inexpensive cure, does not bring job security
#6 If you have it and it is so bad that you can not function for long periods of time, then surgery is probably needed! But please, try all other options 1st, as surgery might not work and you could be left off even worse.
#7 I feel for each and every one of us, who had to suffer from this or is suffering through this. It almost seems like a case of the blind, leading the blind.
#8 If someone is not selling a product and they said a miracle natural remedy worked on them, then do not discredit it. They have nothing to gain, but they are trying to help all the other misguided sufferers! Why do you think I am writing all this.
#9 I am not against all medical and doctors treatments. If your appendix burst, there is no natural remedy for it. You will need surgery, but surgery is and only should be for major life threatening things and for the things internally and externally that can not be corrected by natural cures or rehab.#10 last, but not least. If you are to question your neighbor, friends, family and specially anyone in our government these days, then why wouldn't you question your medical provider and doctors then too!?!

porcelainpanther
New Member


Date Joined Mar 2015
Total Posts : 1
   Posted 3/24/2015 10:01 PM (GMT -7)   
I was diagnosed with Crohns in 2005, there were three small fistulas (rectum to skin). had three setons put in and was treated with flagyl, immuran, and sulfasalazine. I am now only on remicade. the fistulas were gone within a year and I have not seen them since. I would say that they worked.

NY-Sooner
Regular Member


Date Joined Sep 2009
Total Posts : 450
   Posted 3/25/2015 7:39 AM (GMT -7)   
I was diagnosed in 2007 with CD in the colon after getting 2 massive rectal fistulas that surfaced about an inch from my anus, for which  I had ctons installed.  GI wanted me to go on remicade, but I opted to change my diet to the SCD diet first to see if that would work before I went to something more hard like remicade or humira. 
 
After 6 months of fanatical 100% dedication to the diet,  both fistulas were healed so much that the surgeon had to remove the ctons so they could heal all the way.   All my other symptoms of CD like blood and white mucus in my bms and pain in my side were also gone.
 
Today, I still follow the SCD diet (but not as fanatical as before), and I have not had one symptom or fistula from my CD since 2007.  The only drug I take is pentassa.
 
Read the book "breaking the vicious cycle" which goes into great detail on how a woman cured her daughter of UC with this diet. This diet doesn't always work in everyone, but you never know until you try it.   It was on this web site that I discovered this diet.

Post Edited (NY-Sooner) : 3/25/2015 10:48:36 AM (GMT-6)

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