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Fistula draining more than usual

KWalker

Moderator
Hey guys, it seems that over the last week or so, my fistula has been draining more than it usually does. For the past 2+ years I've had it, I've never really had a lot of problems with it (drainage wise) but it seems lately its been draining so much that I don't even want to leave the house incase it reaches the shorts. I can't even sit down on my couch for 10 minutes without getting up and my underwear being soaked in that spot.

Its like thick, sticky stuff, but when I look at my fistula I can't find anywhere that it could be coming from. I have to wear pads 24/7 to try and avoid embarrassment when sitting down.

Could it be a reaction of something I've ate? And would it still be there after over a week? I did drink milk sometime last week with my protein shake, but physically, and health wise, I do feel perfectly fine.

Would it be wise to start taking prednisone again for a little to see if anything gets better? I'm starting college in September and really don't want to have to deal with this embarrassment.

Thanks a lot guys.
 
Drainage is definitely cyclical for me. Is the output yellow or smelly? Sticky makes me think of pus, but it could be mucous.

For me it normally means that either I'm flaring (and may not know it yet) or that it's gotten infected and I need some antibiotics. You should definitely call your GI.
 

KWalker

Moderator
I guess I would say it has a yellow tinge to it when I wipe the excess, and it does smell. Also, now that I think about it, I have been getting a few canker soars in my mouth here and there, which before, I got before my worst flare up ever. These ones are just minor though.

Its kind of a kick in the pants, I was just saying a few weeks ago how well I thought I was doing, and now this. I have some needles and some methotrexate at home, and I also have a prescription for prednisone. Should I try one of them?

It sucks because I don't have a G.I. Right now because I just moved quite a distance from my previous G.I, and felt I was doing pretty well so I didn't need one yet. I should look into getting one though. Where would I even start? Do I go to a clinic and get a referral? I don't have a family doctor here either right now.

Thanks for the help.
 
From experience, I would say it's a bad idea to start prednisone without calling your GI. Even though I'm very experienced with the stuff, once or twice I've started myself on it and the GI was quite irritated when I later had to call him for something and was forced to admit I had already put myself on steroids.

I did it once for my daughter and I was sure the head GI at the children's hospital was going to call protective services on me.

Self-prescription (which includes starting a new course of a drug you already happen to have on hand) is generally frowned upon by the docs and it's usually best to stay in their good graces if you plan on sticking with them for treatment.

I'd just call the old GI and ask for advice. If they say "make an apponitment" and you can't, I guess you could try the pred on your own, but I wouldn't recommend it. Instead I'd say find a local GI as soon as possible.
 

KWalker

Moderator
Okay, maybe ill look in the yellow pages and see what I can come up with. I went to a clinic less than a month ago and the doctor there gave me the prednisone just to keep things under control. I've been on in when I was younger, but its been some time for sure.

I wonder if I call a G.I. Up here if they will give me advice without making an appointment and having to start from scratch.

What do you usually do when your fistula drains more than usual? How long does it usually last? And is there anything you do to control it asap? Maybe I'm not eating enough, or something along those lines.
 
Honestly I just carry more gauze sponges with me and wait for the meds to kick in (either antibiotics or steroids or more Lialda, depending on what I negotiate with my GI).
 
I'm told by my doctor that the more drainage, the better. Means that the fistula is flowing, and nothing is sitting around. It could be the weather. Hotter weather always makes me leak more. It dialates the fistula.
 
Okay, maybe ill look in the yellow pages and see what I can come up with. I went to a clinic less than a month ago and the doctor there gave me the prednisone just to keep things under control. I've been on in when I was younger, but its been some time for sure.

I wonder if I call a G.I. Up here if they will give me advice without making an appointment and having to start from scratch.
Probably not, but you can probably call your old GI you moved away from and they will give you some advice/prescribe something to hold you over until you can be seen in your new area.

Also I would just like to say that anyone with an active fistula, draining or not, needs to be established with a GI. Sometimes you can feel great with this disease and it can still be wreaking havoc with your body. Your GI can determine how often you need tests and track how well you're doing.
 

KWalker

Moderator
My previous G.I knows about the fistula and I've made several trips to the hospital back when I first got it because I was oblivious to what it was and why its there. I want to get it removed, I really do, but I just need to weigh out my options and decide if I really want to go go through all of that and still risk it coming back, like many people have experienced.

Do people with fistulas where pads or gauze every single day to avoid "wet spots" in your shorts/pants? I never had to before, but over the last week-two weeks, I wouldn't leave the house without one.
 
That's what I do. I use a specific store brand of gauze sponge that is soft enough not to chafe and absorbs quite a lot. In a pinch I'll even use paper towels or ordinary 4x4 gauze pads, but those chafe like hell.
 

KWalker

Moderator
I just don't understand how the gauze stays there all day. Do you tape it? I just feel like I'd be clenching my butt cheeks all day so it doesn't fall out lol. I use girl pads that stick to the underwear but I think I need to go more towards the briefs style, because boxers are too loose so its hard to place the pad in the best spot. I also find they don't stick the greatest sometimes. It could be because of the boxers and how loose the material is. I'm not sure.
 
Well maybe I have a big butt, but mine stays put by itself. :) I use boxer briefs that help hold them in place, plus they tend to stick a bit to the draining fistula. Not enough to chafe but enough to keep them from falling right out.
 

KWalker

Moderator
Interesting. Ill have to try it. What do you look for when buying gauze? What brand do you always get? And why
 
In the US they have a pharmacy chain called CVS. They sell a store branded Gauze Sponge in boxes of 50 (really 25 pouches of 2 very thin sponges each). I use two at a time because really I would consider it just a two ply sponge, and the added padding helps them stay in. The box just says "CVS Gauze Sponges" on it. I open a pouch, fold the sponges in half, and stick 'em in my butt crack against the fistula opening. Some clever folding is sometimes necessary depending on inflammation or swelling to make sure opening is fully covered but it's not hard.

I use that brand because the fibers are far softer than a generic "hospital" style 4x4 gauze pad or sponge and the threadcount is higher. They don't chafe or stick to the wound site, either. Regular 4x4 gauze pads or "hospital' style sponges are like sandpaper by comparison and after a full day wearing one you will have a nasty raw patch that can get infected.
 

KWalker

Moderator
Okay, Thanks a lot. Ill see what I can find. We don't have CVS in Canada but I'm sure the drug stores should have something that will compare.

Thanks for all your replies too, you seem to have quite a bit of experience with this, and always have some help to offer.
 

KWalker

Moderator
LOL I was going to say that. I think this is one of those times where more experience isn't necessarily a good thing! Haha
 

Carrie630

The Prettiest Princess
kwalker, sanitary napkins sometimes have sticking trouble. I think it has to do with how clean your underwear is tbh. If I've been sweating a lot I have a much harder time getting a pad to stick to underwear. I'm surprised you can wear them at all with boxers on!

Has anyone tried incontinence underwear? not depends, but actual fabric underwear made to soak up moisture. I would imagine that, if nothing else, it would keep pants from being soiled.

I use pads for any issues I have down there, strategically placed.
 

KWalker

Moderator
How clean my underwear is? Lol. Am I using the wrong kind of detergent or something? Besides the fact that its not sanitary to begin with, having crohn's and a fistula at that, its not good at all to wear underwear for more than one day.

Maybe you interpretted it wrong. They stick at the beginning of the day, but I think because the boxers are much bigger, and can get crinkled up and that, the pad tends to move around. I do think boxer breifs would make a huge difference though as they're tighter to the skin that it would make a huge difference
 

Carrie630

The Prettiest Princess
lol. Well, fabric softener make them harder to stick, but for a female, if we're using a pad for our period we have to change it multiple times a day. They generally seem to stick less well with each subsequent pad change. Even with tight underwear, pads will still sometimes crinkle up and move. The worst thing, I think, is when the edges fold up so some of the sticky is free to stick to anything else it shouldn't like your skin.

They also stick less well if you had your underwear on for a little while and then required the use of a pad.


and yes, a person should change their underwear at least once a day :D
 
I wear a thin pad and use 1/2 jumbo cotton ball tucked in to catch drainage from my fistula and fissures. I change the cotton a couple times a day. This was the method my CRS suggested to me.

I gave up wearing boxers long ago and only wear boxer briefs. This ensures the pad is held in the right place.
 
I'm a guy. I wear pads. No shame. Though, I am looking for something similar to what muppet mentioned. I bought some gauze pads the other day, but they have a non-stick coating on them, and the tend to fall out because of it. Makes for awkward conversations in the middle of the mall.
 

KWalker

Moderator
What kind of antibiotics do you guys get for this problem? I went all day yesterday with no draining whatsoever, then woke up through the night with a ton of stuff down there! I don't understand how there could be such a drastic change in the same day. I have to go to the clinic today anyways so I'm going to ask if there's anything the doctor can give me.

Also, Boxer briefs are on sale at Walmart right now for a good deal, got some, and let me tell you. What a difference! I'm going to have to get used to them,but I know already the difference it will make with pads will be amazing!
 
Antibiotics will only help if it's infected. Not with mucous or serous fluid. Gotta see a GI, man. Sorry. :(. I get flagyl and cipro.
 

KWalker

Moderator
Yeah, I do need to find a G.I. Just for my own safety incase of emergency. Are they're ways to know if its infected? It just baffles me that I went the whole day with nothing so I got excited that it was done for now, then woke up in the middle of the night to probably more than I've ever seen.


I just want to get it removed, but with my luck, it would just come back anyways. What a pain in the ass! (Pun intended! Lol)
 
Interesting. Ill have to try it. What do you look for when buying gauze? What brand do you always get? And why
Back when I had a complex fistula (healed sept 2010 after 7 years and several seton drains). I used the following:

Vaseline only on fistula opening to stop soreness.

Topper 8 gauze pads 10cmx10cm folded in half and taped to area with 3M micropore tape.

pant liners to catch anything the gauze didn't.

I used this method for years and got me through a days work, but I always carried spares. oh and I'm a guy by the way!
 
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