My Fistula Experience

Lived with it for many years, finally got it fixed.

Have you had surgery for a Fistula and would like to share your success with others on the board who might be worrying about their surgery? This is the place, snd we would be happy to hear from you. Also, if you want to keep a Fistula diary, feel free to do so.

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My Fistula Experience

Postby bumhurty » 10 Sep 2015, 10:40

Developed a rectal abscess which turned into a fistula. I initially sought medical attention for the abscess and was told it would come to a head, burst and then go away. It did come to a head and burst, but a fistula developed and continued the cycle of abscess, burst, drain. I went to a proctologist and he felt around and didn't feel an internal opening and sent me on my way. This was 20 years ago, and I had been living with the fistula since, mostly due to fear (from what I had read online about the risks and failures of surgery).

During this time, I found that by staying away from dairy and by taking psyllium husk fiber daily, I could manage symptoms, as long as the tiny, pinhole external opening would stay open and allow for the slight drainage. However, when the external opening would inevitably close over, I would abscess and burst again. This usually happened a couple times a year, even though I had one stretch of no abscess for nearly 3 years, where I thought this horrible malady was behind me (no pun).

As I grew older, I found that the abscesses took more and more of a toll on my health, and I would run a fever and feel very poorly while the abscess festered before it could work it's way to the surface and burst. I read about the risk of sepsis, and this troubled me and after the latest one, I finally summoned enough courage to have it dealt with once and for all. I went to the ER where they lanced and drained the abscess and referred me to a general surgeon.

The general surgeon diagnosed the fistula and scheduled me for a EUA (Exam Under Anesthesia). The procedure was really nothing to fear. I went it, passed out, the next thing I knew I woke up in the recovery room. I was told the surgeon performed a fistulectomy, where the fistulous tract was excised. There was a frighteningly large gaping hole next to my rectum, which gradually healed over a period of 3 months. However, on the follow up visit to the surgeon I asked "was it hard to find the internal opening?" She replied, "I couldn't find it". My heart sank, as I knew that meant the chances of complete healing were significantly lower.

My fears were well founded, because within a week of the wound closing, I abscessed again. The fistula was back.

I managed to get referred to a CRS (Colorectal Surgeon). He stated that the internal opening must be found and addressed, otherwise it will keep coming back. He scheduled and MRI which showed a fistula going through the sphincter muscle. He told me he would likely need to do a flap procedure and it would take more than one surgery. Fine, at this point I was over it. I was no longer fearful of the procedure (the procedure itself is nothing, the abscesses are far, far worse). I awoke in the recovery room and was told some very good news. Despite the MRI showing a fistula though the sphincter muscle, the EAU showed it to be a superficial fistula and they were able to find and address the internal opening via a fistulotomy (de-roof procedure).

Interestingly, the healing from this second procedure took quite a bit longer than the first, but this time it healed up right and now I think I am healed (knock on wood). I had this second procedure on Feb 19th, 2015. The wound was 90% closed by late May, but still had a tiny hole that took an additional two months to fully close. It wasn't until late July that I could say that the wound was 100% closed.

I'm writing this because I hope others who are suffering with a fistula will be encouraged by my healing to seek proper medical attention for their problem. Living with a fistula is far more painful than the surgery.

I would give the following advice (please note that I'm not a medical professional):

1. See a colorectal surgeon to start with, not a general surgeon.
2. Insist on getting an MRI prior to surgery to help the surgeon "map" the fistula and find the internal opening.
3. Insist that the procedure be abandoned if during the EUA, the internal opening cannot be found.
4. Get a fistulotomy, not a fistulectomy.

Lastly, I already feel like this has been a long-winded post so I left out a lot of details. I am happy to try to answer any and all questions.
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Re: My Fistula Experience

Postby Savaici » 13 Sep 2015, 06:15

Hi bumhurty and a big :wel: to our Forum! So glad you came to give us your healing story and what helped you. I've moved your story into the Fistula Success Stories so it will encourage others! Let us know how you're doing? :thankyou:
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Re: My Fistula Experience

Postby tll » 22 Sep 2015, 10:25

Wow, I sure hope eventually my anal fistula will heal also. glad yours went well.

Mine started many years ago and would abcess a few times a year and burst. THen 2 years ago it was a bad one and had to have a seton in and never helped. Then I had a LIFT procedure which failed, so I switched to a very good colorectal surgeon where I live and he did a drain for a while. Then I had a flap, and then I had a ileostomy, which has been reversed now, but none of the procedures completely healed mine. I still have an abcess a few days a week, and has to be drained. Mine is high buy the butt muscle so they have to be careful or I wont be able to hold my bowels if they cut too high and that's where the opening of the fistula is. I had to quit work a year ago when I got my ileostomy then had it reversed last February. I go back next Tuesday to see my Dr again I have not seen him since April I since have tried a few different antibiotics but none have worked so we don't know what the next step is. I just know I wish it was all over with.
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Re: My Fistula Experience

Postby owmybum » 22 Sep 2015, 10:35

Hey til........ I've been wondering how you were.
I'm sorry to hear you are still not fully healed, I can't imagine how frustrating and upsetting it must be for you!

OMB x

Bumhurty,

Welcome to the forum.... It's always great to hear a success story!
fissure after hem banding and tag removal feb 11
Pelvic floor therapy
Diltiazem
Botox June 13
Nitro
Internal flap July 14
EUA and polyps removed Nov 14
Diagnosed with neuropathy Jan 15
Diagnosed with HS EDS type 3 (causes poor wound healing )
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Re: My Fistula Experience

Postby bumhurty » 22 Sep 2015, 11:58

tll, I'm so sorry to hear of your struggles with this horrible problem. I truly hope that you find complete healing.

Here are some things that worked for me while I lived with the fistula for over 20 years:

1. There is an internal hole somewhere in the lower end of your large intestine, likely in the rectum. When stool passes by this opening on its way to the anus, if the stool is soft, loose, watery or otherwise not "self-contained", small bits of stool enter the internal hole and cause an infection. If there is no external hole for the infection to drain pus out of the body, an abscess forms and then bursts. You probably know all this already. I mention this because if you can keep your stools "self-contained" for a while, the internal hole may get smaller and stool won't get trapped in it as often. By doing this is what allowed me to live with the fistula for so long and only abscess a couple times a year. What I mean by "self-contained" is whole, firm, well-formed stools that don't leave much or any residue while leaving the body. Toothpaste-like stools are too soft. They must be firm and well formed logs. It is imperative that small bits of fecal matter do not remain in the rectum after a bowel movement. If fecal matter remains in the rectum, it is very likely to re-infect the internal opening. This means that an ideal bowel movement would be to drop a couple of perfect logs, then wipe and see nothing or next to nothing on the toilet paper. Then do not attempt to go more (this is key). Wait until your body tells you that you must go (next day), and then drop a couple more logs, etc. This way, only fully formed logs pass by the internal opening. Stools that are not yet fully formed remain higher in the intestinal tract until they can fully form for safe passing out of the anus.

2. To get "self-contained" stools, I needed to slow down my bowel cycle so that more water could be removed from the stools so that they would form solid logs. To accomplish this I avoided any foods that would speed up my bowels, especially any forms of dairy. I also took 3 heaping tablespoons of Metameucil fiber powder daily. This fiber gave added bulk to the stools and helped them form into self-contained logs. Additionally, I experimented with Culturelle probiotic, and found that for me, taking one every other day would assist in forming self-contained stools. Lastly, if I found myself in a cycle of loose, messy stools and unable to get out of it, I would take an anti-diarrhea medicine in order to freeze my bowels for a day or two to allow the stools to form completely and remove excess water from the bowel. This last bit I mention with hesitation, because I know many here have lots of trouble with constipation and problems that result from it, but for me it helped.

I hope the above was clear. I know every situation is different, but this worked well for me in at least preventing the abscesses from coming so often. I am happy to answer any questions.

P.S. I also found that daily washing the external opening with Dial gold bar soap helped keep the abscesses at bay. I would squat in the shower and make sure to wash it really good. By doing this, I think it helped keep the tiny external opening from closing completely.
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Re: My Fistula Experience

Postby Cporosus1 » 23 Sep 2015, 05:07

Hey guys, if there's one thing I learned from my experience it's this- ALWAYS go to a CRS first thing and never let it go. Just get it done with and over as quickly as possible. I had an abscess lanced and drained on October 31st last year and on January 7th of this year I had a fistulotomy when it appeared that I had an abscess. The fistulotomy wound itself was large but fairly painless, drainage ceased after 5 days, the wound itself took 3 months to fully heal, but by mid-April I had achieved full healing. I still have a tiny dimple scar near my anus, but this is apparently quite normal in this procedure. Interestingly enough, my continence has actually IMPROVED since the surgery, which is odd since it's usually the other way around. This may also be due to my increase in fiber and metamucil since the issues began. It's not late September and I've had no more problems. Really the worst part has been the anxiety, depression and worry over getting another one, etc. I would like to make a few VERY important points here that should be bulletin points over any website pertaining to anal abscess-

1.) Just because you have a perianal abscess DOES NOT mean you have Crohn's disease or some other IBD. These issues are extremely common in people with IBD, BUT the majority of people who do get perianal abscess DO NOT have IBD, it is just extremely prevalent and difficult to get rid of amongst people with IBD.

2.) If you can, ALWAYS go for the fistulotomy...the less intense procedures (e.g. fibrin glue plug, flap procedure, etc.) have low success rates and usually you end up needing the fistulotomy anyway. A cutting seton is also very successful if the fistula is higher. My uncle had the same thing as me and he had a cutting seton placed in until a fistulotomy could be performed. It's been 5 years since his procedure and he has had no more problems with it (and he's an inactive 56 year old).

3.) More than anything else- DO NOT become overly anxious or depressed. If you do not have IBD or any other immune deficiency, then the recurrence rate is very, very low. And even if you do have IBD, permanent or semi-permanent setons are apparently very well tolerated and much better than surgeries that might not heal.

Hopefully within the next decade or so even better fistula eradicating tools become available. Stem-cell research suggests that some major findings in this field could be forthcoming.
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Re: My Fistula Experience

Postby salamon555 » 23 Sep 2015, 09:26

Hello , I have had LIS , 3 skin tag removal , unfortunatly 11 days po-op 1st surgery I developed a superfistula my CRS cut it open and de-roof it , no antibiotic offered , just to put Gauze with monuka honey the CRS said . today 8 days po-op still experiencing pain and discharge with some blood, and I m wondering about the cut ; like 3 cm long and 1.5 cm deep my problem is the cut merge internally in my anus , is it like that the fistulotomy can be ? or my case is worse ?because whenevr I have a BM the wound get reopen I m wondering how the heck this cut can heal ?? also I find out it is hard to clean after BM's . please anybody have the same experience help me , would be appreciated
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Re: My Fistula Experience

Postby bumhurty » 23 Sep 2015, 12:27

Salamon555,

My fistulotomy wound was also "connected" directly to my anus. I think this is normal. Healing time varies but can take a full six months. I would highly recommend at least 2x daily sitz baths for at least the first month. Also, it is important to bathe after each and every bowel movement, despite the inconvenience. You may also want to invest in an adjustable stream handheld shower nozzle to assist.
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Re: My Fistula Experience

Postby Cporosus1 » 23 Sep 2015, 19:56

Fistulotomies should always connect directly to the anus since that is where the internal hole usually is! Occasionally a fistula will have both its two holes external, but this isn't really an "anal" fistula. A good fistulotomy will cut just enough of the sphincter to eliminate the chance of recurrence but not enough to cause incontinence, that's why finding an experienced CRS is vital. To keep it clean I simply used a shower head after every bowel movement. This is, of course, more difficult if you have multiple BMs per day.
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Re: My Fistula Experience

Postby salamon555 » 23 Sep 2015, 21:10

Thanks Bumhurty and Cporosus1 for the info. , very nice from you to give a great support and good advice as you all have been through this experience , would you please post your diaries if you can remember like (pain , meds, cleaning ...) at least the first month post-op ? Thanks again
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