Fistula Advice: Have Fistula, Always Have Itching/Diaper Rash?

Hey guys, this seems to be the place to go to confer with other people who have anal fistulas. I thank you in advance for having me.

I had a perianal (perirectal?) abscess in April 2009. Let it go on WAY too long (in extreme pain) before an ER trip to cut/drain it, overnight stay in hospital, then follow-ups with surgeon. The abscess "wound" itself is apparently "healed nicely" according to the various colorectal surgeons I've seen.

Of course -- and I was always praying this wouldn't happen to me, but it did -- in 2013, I had pain down there again, conferred with a colorectal surgeon and got an MRI: they said I had a fistula. I believe, at that time, I took some hardcore antibiotics to tame it. Doc was trying to push me into the plug surgery, that my insurance wouldn't cover, yet he was still trying to push me into it. I was OUTTA THERE. Found a new doc who was more understanding.

I am probably never (I dunno?) gonna have a surgery that I don't know the outcome of before going under. That's what the first doc said would happen. They don't even really know what they're gonna do before they put you under, and they were telling me all this stuff like how i could end up incontinent. Yup, not doing it.

The thing is, the fistula itself never really bothers me (at least pain wise). It has a few times in the past, but it always goes back to "normal." I had a new colorectal surgeon that I really liked, before I moved to a different state -- and I wish I could still see her. She even said she'd be willing to do an "exploratory" surgery and promise not to do anything to me without my consent, just to see how superficial it is. Never followed through on it. Who knows what I may seek out in the future.

My thing now is this: I've basically been dealing with (what I thought was) "jock itch" for about the entire time I've had the fistula (2013 onward). It's actually only very recently that I kinda realized it's probably not even jock itch, but more like "diaper rash" (for lack of a better term?) that stems from not being "anatomically correct" (lol) in that area.

So, I've never had a seton or anything like that. I've just always dealt with it, for fear of being worse-off after some surgery where I don't know what's gonna happen. I've tried various creams from doctors to deal with the itch. It kinda starts from "around" the area where my fistula is at my anus, but not directly (I think) on it. It mostly (the itch) travels in the crevice on the side of the fistula up around my scrotum, hence my always thinking I had some insane case of jock itch that basically never goes away.

Is there a certain cream I can get prescribed to actually tackle this? I used some steroid/itch cream perscribed a year ago that did help it temporarily after using day/night two weeks, but it always comes back. Obviously, baths every day and just keeping clean goes a long way, but nothing seems to take the itch away full time. It's ONLY on the side where my fistula is, so I figure that has to be it. My GP doc in Dec gave me ketonozacole cream to treat it -- been using day/night for 4 weeks with no real relief. Actually just started using Desitin on the area and (while it's on) it seems to quell the itch more than the ketonozacale.

Can I ever overcome the itch (rash???) without further surgery? Is it just baths and showers everyday for the rest of my life? I keep thinking if I find the right cream to make it go away, and then just be ultra hygenic, I should be good. I dunno.

Sorry for the long post. This thing drives me crazy. It's so weird that the fistula itself rarely bothers me. And who knows what it's turned into now. Probably need to find a colorectal surgeon near where I live.

If a steroid cream is helping, then it definitely is not fungal and probably shouldn't be treated with the ketonozacale. When I had thrush, prednisone always made it worse. Have you tried something like a heavy-duty lotion? Could the area be extremely dried out?

Have you tried any natural itch remedies?

Apple cider vinegar was extremely helpful for my RVF itching. I soaked a cotton make up pad with ACV & held it in place for a few mintues. It worked well.

Labradorite said...
Do you keep gauze (or tissue or even a soft paper towel) up against it to soak up any leakage? I had similar issues when my fistula was inactive and even after it healed because I had a small amount of discharge from my backside because the rectal inflammation messed everything up. I keep a paper towel there which was annoying at first but it keeps it dry so minimal problems since. I also wash the area multiple times a day rather than wiping with dry paper which will irritate the skin.

I've literally never kept anything there, not in the long run. The only time I ever did that was immediately after the abscess operation, just to be on the safe side while it healed -- that was 4 years before the fistula even happened.

Am I supposed to keep something there? I honestly don't think I have any drainage? How would I know if there's drainage?

Also -- if the case was that fecal matter is getting into/coming through the fistula itself, wouldn't that tend to get infected and make things worse? I feel like I would know if that was happening (fever, sweating, etc.). I dunno.

Labradorite said...
You don't have to but if its bothering you, its worth trying.

@Labradorite - What type of tissue (ball?) or gauze (?) or whatever do you use to keep on it? How does it stay put? Since thinking on this, I kinda want to give that method a shot -- just to see if I can tell there's discharge and/or if it helps.

I just really don't know what type of gauze or whatever I should get to best suit it. It's such a sensitive (and, hah, you know, "unseen" -- to me) area to keep something on it all day. But I'd be willing to give it a shot.

I'm back on two weeks of triamcinolone cream (2x/day) applied to that area up by my scrotom/between my legs/on the side of the fistula to try and keep the itching down again.

It's basically absolutely correct what everyone said -- the itch isn't just "recurrent jock itch." Although my GP says it has "nothing to do" with my fistula (HAH! WRONG!) but whatever... he prescribed the cream... THE ONLY THING IS that you really can't abuse steroid creams, so I REALLY need a fix. If I keep going back to steroidal creams that skin (thinner than regular skin) up in that area could potentially atrophy...

Will GI docs look at your actual anus, if you have a fistula, to see how it's doing? I don't have chrohns (THAT I KNOW OF!). I've only ever been to a colorectal surgeon (wish I had one here) and I don't have one near me now.

Post Edited (theconvalescent) : 3/30/2017 10:50:52 PM (GMT-6)

@clo2014 - How often do you use the Calmospetine? Once a day? How often do you bathe? Is the whole shower/dry/calmoseptine/tissue paper routine 1x/day or 2/xday for you?

I do remember that, for a brief period years back, I took 1 or 2 REALLY hot baths a day. And that basically did the trick for a few months. At the time, I had a garden-sized tub that was comfortable to stay in for long periods of time and could deeply submerge your whole body. Now, I have a regular stupid shower/tub and unfortunately not the time to bathe myself like that everyday. Life's crazy, huh?!

I have a fistula with seton placement Right now and my surgeon said it needs to be kept really dry so I keep two pieces of gauze folded in half pressed up against the seton and change as necessary depending on the drainage. I'd suggest this. At first I wasn't and he said the skin being wet all the time would cause the diaper rash feeling and some skin deterioration. I never used creams or powders. Lots of sitz baths, and lots of showers after all bowel movements. Pat dry and apply clean gauze. Best of luck!

How do you guys get the gauze and/or toilet paper to stay in place? I just now tried it for the first time -- after a bath -- with a small piece of folded up TP. It does kinda seem to stay just due to the sheer anatomy of my butt cheeks "folding" together, as they do naturally upon standing up. But I haven't really tried it yet sitting down or for longer periods of time.

Placing it kinda forced me to feel around there, more than I usually do, and it would seem (I think) that my fistula "opening" is pretty "high up" -- i.e. very close to where my scrotum/groin area... as opposed to further "down" on my anus. (I guess that would actually make sense as to why any apparent "drainage" is more so causing itching in the places I thought would be "jock itch" areas... and not so much "perianal" itching? So strange.)

I'll be interested to see if I can notice any "drainage" on the TP after a while. Being a guy, I get sweaty and stuff down there anyway, I'm kinda anticipating I won't see that much of anything identifiable? Is it markedly different looking from just "moisture" when you change your TP/gauze?

I wish to God I could just get a simple fistulotomy and get this whole thing over with. Still have never had even "fistulagram" or whatever exploratory measure to put my under and even see how difficult a fistulotomy would then be. It's all such a pain in the... ass. This crap really makes me question life in general some days.