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10-15-2010, 09:56 AM   #1
TMos
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Fistulas

How do you know if you have an anal fistula? I mean without a mirror. Do they bleed? I'm sure they're pretty small, right? Do they have a discharge? I've got a little something going on with a little blood and some kind of greenish/brownish stuff and it hurts when touched but I can't tell if it's a tiny hole or what. I did have some really bad pain down there a couple nights ago, really painfull cramp type pain. It was gone in a few minutes so didn't think too much of it.

I have an appt with my GI tuesday, just curious if I've develeoped a new hole. : (
10-15-2010, 10:12 AM   #2
ellecubed
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When I had mine I noticed some blood and some brownish/yellow discharge.
10-15-2010, 11:20 AM   #3
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well I squat and use a small mirror with a flashlight aimed at the mirror to "highlight" the bum hole area... so awkward and there is a reason we can't see this part of our bodies.. YUCK!.. But I do it to keep a look out on the hemroids and I have a fistula there too.. Here is some TMI I have 3 large grape size ones that are hard and then the smaller ones that bleed.. that whole area is awful and yes even I looked away when I saw it.. but looking explains why it hurts so bad...
so get a mirror and flashlight and check it out
10-15-2010, 11:44 AM   #4
Rebecca85
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Lol, I do that too coffeehouse! I don't get fistulas as far as I know, but I do get those annoying cracks at the top of my bum, and they hurt so much I do have a look so I know what I'm deLing with. Also if I do get a bit of blood on the toiket paper, I will have a look to see if I can tell where it's coming from.
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10-15-2010, 11:56 AM   #5
Lisa
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It sounds like you may have popped out a fistula and/or an abcess.....when my fistula(s) came out, it was excruciating.....they weren't little either.....I would give the GI a call even tough you have an appointment pending - jsut to give a heads-up.....
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10-15-2010, 11:58 AM   #6
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for me the toilet is always full of blood and clots so I wash that area then check it out.. I am so glad I am not hairy down there.. that would make it even worse.. im sure the guys have it worse in that department. I find that I laugh a lot with this disease.. makes for an easier day.. ha ha
10-15-2010, 01:39 PM   #7
TMos
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It sounds like you may have popped out a fistula and/or an abcess.....when my fistula(s) came out, it was excruciating.....they weren't little either.....I would give the GI a call even tough you have an appointment pending - jsut to give a heads-up.....
Was it a super painful cramp in one side of your rectum? That's what I had. Thought I was going to go to the hospital. It can't hurt to just wait until Tuesday can it?

I only notice it when I wipe from going. I've been constipated for the past couple days though. Jeez, there's a lot of stuff you gotta keep up on. I'm very thankful for this forum. You guys are great.
10-15-2010, 01:39 PM   #8
TMos
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for me the toilet is always full of blood and clots so I wash that area then check it out.. I am so glad I am not hairy down there.. that would make it even worse.. im sure the guys have it worse in that department. I find that I laugh a lot with this disease.. makes for an easier day.. ha ha
I'm sorry about that. I hope you can get in to see a doctor soon.
10-15-2010, 01:42 PM   #9
Lisa
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Was it a super painful cramp in one side of your rectum? That's what I had. Thought I was going to go to the hospital. It can't hurt to just wait until Tuesday can it?

I only notice it when I wipe from going. I've been constipated for the past couple days though. Jeez, there's a lot of stuff you gotta keep up on. I'm very thankful for this forum. You guys are great.
If I remember correctly (this is a few years ago no).....it was almost pin-point pain- I had a recto-vaginal one.....then lots and lots of burning...because I had D and it was going through the raw tissue.....
10-15-2010, 01:44 PM   #10
rottengut91
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If you're having pain down there, you need to see a doc. You probably have formed an abscess/fistula or at the very least a fissure. Either needs to be taken care of. It you have an infection down there, it can get out of control pretty fast. My abscess came up in a matter of days. It started out as a hard, lumpy area, then kept getting bigger and bigger quickly. The pain was excruciating and it can seem embarrassing, but everyone in the ER and the CR surgeon I saw were all very understanding. They see this sort of thing all the time, it seems uncommon to us because no one openly talks about such issues, but they probably see it several times a week. It happens to the best of us. Get it looked at. And yeah, I do the squat and mirror thing. It aint pretty down there, it needs taken care of. Good Luck.

Mine didn't bleed or ooze pus until after they popped it in the ER. Not much blood, but pus and yellow/brown liquid. My GI calls it poopy juice. I have a seton in mine to keep the tract open so it constantly drains, otherwise it could close up and form an abscess again.
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10-15-2010, 07:35 PM   #11
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Mine is in such an awkward spot I need my dear long-suffering husband to look with a flashlight lol! He deserves a medal...anyway, I get a green discharge, sometimes it's yellow. Most recently it seemed to "open" and ALOT of clear liquid poured out, like I had wet my pants, but in the back. And for me the pain is unmistakeable.
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10-15-2010, 08:27 PM   #12
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Fistulas and abscesses are awful! When it has a 'head', it's really really painful. Painful to sit, painful to lay down, painful to go to the bathroom...Plus, I often get fever-like symptoms...chills, nausea, high temperature, food repulses me, etc.

I use a soft flannel (baby diapers) cloth dipped in really really warm water and 'hot compress' the perianal fistula and/or abscess. I also sometimes use those little round makeup remover pads as well. I hot compress several times a day, and at some point, it 'breaks' open and disgusting things pop out that are green, yellow and red in colour. Once it breaks open, I start feeling a lot better.

Often, my doctor prescribes antibiotics to try to send the fistulas packing.
10-15-2010, 08:38 PM   #13
Mountaingem
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Great tips! I soak in a sitz bath of very hot water and about 1/2 cup Epsom salts, seems to bring matters to a head quicker.

Also, I seriously love Calmoseptine-you have to ask the pharmacist for it, they keep it behind the counter. It comes in a big tube-you should see the pharmacist's face when I ask for two lol!

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10-16-2010, 06:25 AM   #14
georgiegirl
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Oh dear god, something else to look forward to!!! I should really stop reading things unless they relate to me!

I do have a fissure though, which cleared up with Rectogesic (who names these things?), and has now formed a very attractive skin tag. Not large enough to name it yet...can't remember who did that!
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10-16-2010, 06:35 AM   #15
Lucy
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Sounds so painful. I've not had them so far and by the sounds of it I really do not want to.
Why do crohn's pt's get them exactly?
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10-16-2010, 04:37 PM   #16
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I used to live in fear of fistulas,too. I think mine are caused by a period of time where the treatments my (former) doctor was offering didn't work for me. The prolonged inflammation brought it on.

I found this explanation for the cause on the CCFA website:

"Some patients may develop tears (fissures) in the lining of the anus, which may cause pain and bleeding, especially during bowel movements. Inflammation may also cause a fistula to develop. A fistula is a tunnel that leads from one loop of intestine to another, or that connects the intestine to the bladder, vagina, or skin. Fistulas occur most commonly around the anal area. If this complication arises, you may notice drainage of mucus, pus, or stool from this opening."

So there it is, as easy an explanation as I could find. Please don't let our experiences frighten you; just try to look at it this way: if you develope the symptoms we describe then you'll know what is that much sooner. Most of us found out the hard way, and ended up with a diagnosis after a trip to the emergency room.

Some Crohn's patients don't develope them. I just wish I had started Remicade sooner and not let fear control my control my common sense; I might have been able to avoid this complication.
10-16-2010, 05:10 PM   #17
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Thank you so much for the info. Gotta love this forum.
10-19-2010, 03:33 PM   #18
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I just wish I had started Remicade sooner and not let fear control my common sense; I might have been able to avoid this complication.

Amen to that, 8 surgeries later (just for the fistula) and I was wishing I had been a poster child for Remicade! The first surgery I had 23 removed...yep, you read that right...The surgeon brought in a bunch of interns to look at my butt...sure was glad I was on heavy pain meds and didn't mind!!!!

So, if you have the slightest, and I mean slightest, idea you may have a fistula, run, don't walk, to your doctor and get it checked out....it is nothing to mess with...please don't let it go like I did. I did what I did out of fear, the unknown and embarrassment. Now days, they can pretty much do whatever they want to me, as long as it makes me feel better.

Remicade has been a god send to me and I don't know what I would do without....can't imagine going back to the way it was.
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10-19-2010, 03:58 PM   #19
rottengut91
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The surgeon brought in a bunch of interns to look at my butt...sure was glad I was on heavy pain meds and didn't mind!!!!
The last time I saw my GI, he had a student shadowing him. He said, "come here, you want to see this, you've probably never seen this before." I have a seton currently. I'm getting ready to start Humira, just waiting for it to arrive. I don't know if it's my fistula or just my rectum in general, but my anal area is hurting like a %$#^! *&&^$#. I have taken four vicoden today along with my tramadol. It's still hurting, it's beginning to get to me. I cannot wait to get rid of this thing. Hoping the Humira is the answer for me.
10-19-2010, 04:21 PM   #20
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Hoping the Humira is the answer for me.
I sure hope it works for you, Remi works better for me (found that out the hard way)....as I told someone on the Crohn's facebook page when she asked which drug is the best...the answer is plain and simple...."the one that works for you."

Humira is so easy to do which is why I wanted it. I never had a bit of trouble giving the injections, etc. The only thing was, it just wasn't enough, and the crazy insurance wouldn't cover any more than the "recommended dosage". I really don't think my attitude when talking to them helped matters either, but what ya gonna do....

Hang in there, the Humira will hopefully help you a bunch.
10-19-2010, 04:22 PM   #21
Mountaingem
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The last time I saw my GI, he had a student shadowing him. He said, "come here, you want to see this, you've probably never seen this before." I have a seton currently. I'm getting ready to start Humira, just waiting for it to arrive. I don't know if it's my fistula or just my rectum in general, but my anal area is hurting like a %$#^! *&&^$#. I have taken four vicoden today along with my tramadol. It's still hurting, it's beginning to get to me. I cannot wait to get rid of this thing. Hoping the Humira is the answer for me.
Don't you hate that-you're sick as a dog and the doctor brings in some intern to stare at your rectum-nice!

I had a doctor do that. When I was prepped and ready to go for a colonoscopy, in walks five interns, and I'm like WTH? And he says "Oh, you don't mind, do you?" Well, too late now if I did!

I had another doctor in emergency bring in an intern to look at my fistula, and the intern says "Could you point it out? Maybe if you waxed it would be easier to see." Oh, hell no he did not just say that!

If you're in that much pain, you might have an abcess. You should get that checked out ASAP. Antibiotics will help you feel so much better.
10-19-2010, 04:33 PM   #22
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I've been concerned about that. Maybe I might be developing an internal abscess. I've been having pain down there for some time now, it comes and goes. If I'm on my feet alot, the pain intensifies. Today it's just been hurting all day, the pain just won't go away. I was hoping the Humira would arrive this week so I could get in to the GI clinic on Friday and get it going. My GI wants my CR surgeon to remove the seton the same day. I have an follow-up appt. scheduled for the 28th with my surgeon anyway. If it continues to bother me this much, I think I'll give one of them a call and see what they think. I did initially have an abscess that formed this fistula. It was surgically drained at the end of August. It has been draining ever since, but sometimes has terrible outpourings of pus, kinda like I crapped my pants, but with pus. I haven't been on anti-biotics for a while now (took two rounds of Flagyl/Cipro).
10-19-2010, 04:41 PM   #23
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I had a doctor do that. When I was prepped and ready to go for a colonoscopy, in walks five interns, and I'm like WTH? And he says "Oh, you don't mind, do you?" Well, too late now if I did!
Yeah, and have you ever noticed that when this happens, the interns look like they just stepped off the set of General Hospital! It is so embarrassing!!!!! I had words with the surgeon afterwords...he just didn't see my point...to medically centered...Oh well.
10-19-2010, 04:43 PM   #24
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Oh Sweetie, I'm so sorry! You shouldn't have been off antibiotics in my opinion, especially not with it still draining!

Sending hugs-I hope and pray you find some relief soon.

10-20-2010, 10:44 AM   #25
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Well, saw the GI yesterday and its fistulas. He's still 100% certain it's post infectious ibs but I'm scheduled for a colonoscopy 11/3 since I asked, because of this forum, if it's crohn's and I'm not doing anything for it can the condition worsen. His answer was "yes" and since I've had fistula's apparently popping up and then closing for about 9 months, along with the my other symptoms and family history he's doing a colonoscopy.
I mean, wtf is up with having a bunch of fistulas? Do people without crohn's get them? I've never heard of them except for my mom's that went through to her vagina. Now that I know what they are I've been dealing with these f&%$#$s for all of 2010.
10-20-2010, 10:48 AM   #26
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I'm sure there have been updates in the last 30 yrs, but when I was first diagnosed I was told that fistulas were one of the defining factors of Crohns.
10-20-2010, 11:01 AM   #27
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Guess I need to start squatting on a mirror. It's just so scary back there.
10-20-2010, 11:49 AM   #28
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Hiya Tmos,
Yeppers.. it took a visit to the ER to find out i had an internal abscess that ruptured, along with a peri-rectal fistula. Couldn't see the bugger b/c it was connected to a small mass I had inside, which turned into an abscess and it was just draining itself into the intneral rectal region. I had been in quite a bit of pain off and on almost all last year. My PCP thought the lump i had was a swollen lymph node. (was off and on antibiotics all year for that and various other stuff throughout the year, tooth abscess, infected another tooth.. that one abscessed.. then the infection went into my jaw bone.) It took the actual visit to the ER after I realized the lump was @ the size of a small lime inside, and had somehow ruptured. They started me on serious antibiotics ASAP and had me see a CR Specialist and told me that I needed to be checked for Crohn's. It was the 1st time in my life I had heard of CD! But since then I've had surgery to have it removed, and feel lucky to have caught this disease in time before it wrecked more havoc on my body! It's intimidating to think of all the things that could happen.. so I'm so glad you're being seen! Hope they get you fixed up.

My CR Surgeon said that once the disease is turned on it doesn't know how to turn itself off. So, it's important to know what's going on with our bodies b/c those darn fistulas, and whatnots can continuously get worse and make us sicker that heck if not caught in time.
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Prev: Traimcinolone, Nystatin, Promethazine, Omeprazole, VIT D, Folic acid, Sulfasalazine, Xifaxin, Zolpidem, Ranitidine, Cipro, Vasculera, Erythromycin, Hydrochlorothiazide, Prednisone, Naproxen, Levocetirizine, Flexeril, Methotrexate, Levaquin, Metronidazole, Tizanidine
Surgery: Abscess/Fistula - Aug2010; GB 2015
10-20-2010, 12:51 PM   #29
TMos
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Dang GirlyGirl. Sorry I was complaining. So they didn't give you a firm diagnosis? How do they know which drugs to give you?
10-20-2010, 01:42 PM   #30
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Heya TMos.. No worries.. well I don't necessarily have a "firm" diagnosis.. as far as what all exactly I do have..

However, my CR Surgeon did the special Exagen Gene test. My labs came back to initially confirm the IBD. in a normaly person the range is supposed to be 0.00 I think.. and w/IBD is anything over. My index was 2.46 = Consistent w/IBD. then it took a while for the CD/UC differential to come in. But the day of my surgery my CR Surgeon told me and my mom that i did have Crohns. The 2nd labs show more to be UC for the gene pull test. But my CR Surgeon said I may have Crohns Colitis..

The main basis i think is that they also take into account the way the disease affects your body. UC is only in the large intestine, while CD is patchy.. anywhere from your mouth to the other..

I happen to get the apthous ulcers as well on my tongue. Have gotten them for a while and it's a Crohn's thing. In 2009 I went a while where I couldn't keep food down.. that led to my PCP giving me Rantidine for ulcers in my tummy, then to Omeprazole 40mg. I just figured the ulcers in my mouth were coming from my tummy.. and my Primary Care Phys didn't know to look for CD so I was given Lidocane mouth rinse so i could eat.. those buggers are painful!

So, my hx is consistent with Crohns. And have a family hx of colon cancer so they are doing all the needed tests for that too. My dad's dad died of colon ca (23yrs he had it), my mom's grandma died of colon cancer, and my moms aunt also, .. anywho.. all my grandparents have passed, as well as my father. So, even though i look normal and healthy.. i have a family hx of illnesses.. (darn the luck..) but it's ok.

And the lump which showed up in Feb of 2010 was thought to be a lymph node.. but grew out of control b/c it was a mass/abscess.. eventual fistula.. which wasn't "really" treated until Aug 2010..

since then my labs have been weird.. but i've never had so many darn blood tests and other stuff too..
Have since had an ultrasound of my thyroid.. the Fri b4 last I think.. found a nodule.. but it's small
Also, had my Primary Care Phys do some lab where i have a positive ANA. Healthy people have a negative ANA.. so I'm going to see a Rheumatologist on the 2nd to see if it's just the Crohn's, or if it Lupus as well, or Rheumatoid Arthritis..

My GI did an EGD last Tues.. and took biopsies. Found some erosion in my stomach somewhere but they only did labs for cancer. So, that's rulled out - from those samples anyways..
Must say.. it's been a wild ride the past few mos! One thing after another. But this forum has given me so much strength to push through i do believe it has been my saving grace! Everyone here is so open and understanding.. ! it's great!

As for the drugs to give me.. well i've been on a WHOLE bunch over the past few months. had a 30day Cipro/Flagyl, 2000mg Sulfasalazine (made me feel worse.. think it was the sulfa in the drug) so switched me to Apriso 1500mg/day. I'm not sure yet how they determine everything they put you on, but i think they try to put you on as less as possible.. and seems to just be a hit and miss type of thing right now. I'm still learning though. I know the Apriso is a 5-asa.. and there are some other ones that are given if the disease is worse.. so depends on the severity as well. And how your body handles it. My tummy gets really swollen now. And i just deal with it. But just finished another round of Xifaxin 550mg 2x/day 10days for that. That one is expensive so they are hesitant about prescribing it.

I wish i had better insight for you! If you ever want to send me a message i'm open to that too. I'm always here.. or just a click away.. nothing too out there to me anymore! lol.. i'm rolling with it these days..
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