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Crohn's Disease Forum » Your Story » Is it a fistula? And could all my symptoms be related?


02-11-2017, 07:27 AM   #1
chantelle9294
 
Join Date: Feb 2017
Is it a fistula? And could all my symptoms be related?

Hi all. I am new to this site and haven't been diagnosed with IBD, but my doctor has mentioned that it's a possibility.

I suppose a little history is a good place to start.

About 5 years ago I had a bout of extreme diarrhea, where leaving the house became impossible because I couldn't risk being away from the toilet for any length of time. After testing, I had some sort of bowel infection (I wasn't given specifics, just antibiotics). After completing the course, the symptoms did clear up, but I found they were recurring every 1-4 weeks, sometimes months between bouts. I have had countless tests but no more infections have ever shown up. Last year I was diagnosed with IBS after having months of unexplained constipation and diarrhea, with no noticeable food/medication/consumable connection. I started on a healthier diet with no noticeable differences.
Around the same time as the IBS diagnosis, I noticed a lot of rectal bleeding after most bowel movement, but I put it down to tearing in the skin from the constant wiping again, and again, and again due to the diarrhea. It has never seemed to heal, but I assumed that was just due to wiping daily (not counting constipation days) and the tear never having a chance to heal properly. I have also noticed some light brown mucus type fluid for the past 6 months or so that doesn't seem to have much of a smell. Only yesterday did I realise that wasn't actually coming from my anus, but from the tear (I had not just had a bowel movement, it was just a random leakage). After wiping that away, I noticed there was quite a lot of blood, a lot more than usual. So I took a photo and found a large pool of blood. I stretched the skin to get a better look and took another photo, and found a hole just below my anus. It's probably 1-2mm in diameter, in the same place that I always thought was a tear.

I have read through a few other threads and noticed people mentioning heartburn and reflux, and cramping and bloating. I was diagnosed with GORD 4-5 years ago, and I suffer from a lot of cramping and bloating that my doctor said was a result of the IBS. Should I be asking him to further investigate the possibility of IBD? I don't want to be one of those hypochondriac people that sees a disease or illness name and puts their hand up to say "yes, that must be what I have", but I also don't want to leave it and run the risk of being misdiagnosed just to save my pride. I do however feel better knowing that I am already on Pyralin and Naproxen for diagnosed seronegative rheumatoid arthritis, which I am told is a medication commonly given to Crohn's and ulcerative colitis sufferers.

Thank you in advance for any advice, and I am sorry for the super long post. I had no idea what to say or what not to say. Oh and I am going to see my doctor, but I cant see him til Monday, hence asking for advice in the mean time.
02-11-2017, 10:01 AM   #2
Walt
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Hiya Chantelle,
Welcome to a warm & informed online community.
I was sorry to hear of your suffering.

I see that you are so new, you do not know what questions to ask, etc.
If you were seeking sympathy from sick strangers, you have it!
sorry for your struggles

If you were seeking better health information, time to develop a new skill set.

For starters, a medical test is ordered by a medical doctor.
You know not what test you had, nor it's results.
As far as a health challenge career would be evaluated...
that would be a fail.

I have learned, over decades of dancing with illness
and horrible incurable disease...
I must take control for best results.

When a doctor orders a test, they get a result back in a written report.
I would first obtain my own hardcopy of the expert's report of the test you already had.
I never accept the old "if you do not hear from us, assume it is okay".
That is bullshit, and a joke of a way to handle matters.

I have learned:
any medical test worth having ordered and taking,
is also worth obtaining result reports in a copy I control moving forward.

Many people on crohn's forum know their stuff.
The stakes are our quality of life, and our life.

I am not a doctor, I do not diagnose anything.
However, I am skeptical of "bowel infection" as a bit of a catch-all?

I have had CD for decades.
I have had holes, tears, mucous etc as you refer to.
Do you suspect dirty mucous is leaking from the external opening?
Do your homework on anal fissure and also anal fistula.
Don't try to determine if that is what-you-have, just learn all facts you can.

Start a health folder of your own.
Sometimes, if a doctor is cool, I will allow them a copy of something
from my file, which I carry, build and control.

If I decide to fire a doctor, I already have my folder, and so can
take-a-stroll without complications.

When you say bleeding a lot, what do you mean?
It varies and some of us are "bleeders".
A few red drops smeared on the toilet paper?
Sometimes I can make a zigzag pad of single squares in a stack.
Hurting past the point of further wiping action, I can only press the pad to my butt.
Sometimes the pad goes wet scarlet to four corners, dripping.
That is my definition of a lot of toilet blood.
your mileage can, should and will vary! : P

Sorry for are unwell.
If you really want to advance your grasp, help us help you.
figure out the tests you have already had.
Figure out what test to next have a doctor order for you.
Gather your own file on your own health, as though no one else was doing it.
Make your personal health file the best version out there.

Many find a food diary helpful to reveal patterns over time.
I chart everything in & out of my body, for example.

Having inflammatory bowel disease formally diagnosed can be tricky.
Eliminating it as a possibility, on the other hand, is quite easy.
The first big fork in the road is if inflammation is part of the problem.

Seroneg RA is also inflammation in your system.
Many who have IBD, not to be confused with mere IBS, have arthritis too.
I am concerned that if you already have other inflammation running amok,
it increases the likelihood it is also affecting your bowel/digestive system.

wishing you only well,
peace
w

ps
my experience with abnormal holes and tears is that they tend to persist?
healing such with active IBD is precarious at best : o
time to build you medical system skill set!
__________________
currently 'enjoying' Metho, Remi gave me Lupus, Humira pens now weekly - jury still out?
whew, just a little Prednisone?

I'm starting to think Crohn's isn't as much fun as they made it sound in the brochure?

Be who you are and say what you feel,
because those who mind don't matter and those who matter don't mind - Dr. Seuss

A hard road is better than no road.

getting knocked down is nothing.
bouncing back is everything.


in the end, only kindness matters...
02-11-2017, 10:37 AM   #3
ronroush7
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Yes. I would ask your doctor to do further investigation into the possibility of IBD.
02-11-2017, 10:39 AM   #4
chantelle9294
 
Join Date: Feb 2017
Hiya Chantelle,
Welcome to a warm & informed online community.
I was sorry to hear of your suffering.

I see that you are so new, you do not know what questions to ask, etc.
If you were seeking sympathy from sick strangers, you have it!
sorry for your struggles

If you were seeking better health information, time to develop a new skill set.

For starters, a medical test is ordered by a medical doctor.
You know not what test you had, nor it's results.
As far as a health challenge career would be evaluated...
that would be a fail.

I have learned, over decades of dancing with illness
and horrible incurable disease...
I must take control for best results.

When a doctor orders a test, they get a result back in a written report.
I would first obtain my own hardcopy of the expert's report of the test you already had.
I never accept the old "if you do not hear from us, assume it is okay".
That is bullshit, and a joke of a way to handle matters.

I have learned:
any medical test worth having ordered and taking,
is also worth obtaining result reports in a copy I control moving forward.

Many people on crohn's forum know their stuff.
The stakes are our quality of life, and our life.

I am not a doctor, I do not diagnose anything.
However, I am skeptical of "bowel infection" as a bit of a catch-all?

I have had CD for decades.
I have had holes, tears, mucous etc as you refer to.
Do you suspect dirty mucous is leaking from the external opening?
Do your homework on anal fissure and also anal fistula.
Don't try to determine if that is what-you-have, just learn all facts you can.

Start a health folder of your own.
Sometimes, if a doctor is cool, I will allow them a copy of something
from my file, which I carry, build and control.

If I decide to fire a doctor, I already have my folder, and so can
take-a-stroll without complications.

When you say bleeding a lot, what do you mean?
It varies and some of us are "bleeders".
A few red drops smeared on the toilet paper?
Sometimes I can make a zigzag pad of single squares in a stack.
Hurting past the point of further wiping action, I can only press the pad to my butt.
Sometimes the pad goes wet scarlet to four corners, dripping.
That is my definition of a lot of toilet blood.
your mileage can, should and will vary! : P

Sorry for are unwell.
If you really want to advance your grasp, help us help you.
figure out the tests you have already had.
Figure out what test to next have a doctor order for you.
Gather your own file on your own health, as though no one else was doing it.
Make your personal health file the best version out there.

Many find a food diary helpful to reveal patterns over time.
I chart everything in & out of my body, for example.

Having inflammatory bowel disease formally diagnosed can be tricky.
Eliminating it as a possibility, on the other hand, is quite easy.
The first big fork in the road is if inflammation is part of the problem.

Seroneg RA is also inflammation in your system.
Many who have IBD, not to be confused with mere IBS, have arthritis too.
I am concerned that if you already have other inflammation running amok,
it increases the likelihood it is also affecting your bowel/digestive system.

wishing you only well,
peace
w

ps
my experience with abnormal holes and tears is that they tend to persist?
healing such with active IBD is precarious at best : o
time to build you medical system skill set!
Thanks for the feedback. Being so new, I wasn't sure what is considered too much information in the way of specifics. The bleeding is sometimes a few spots, sometimes more a 1cm sized blot on the paper. Last night was the most painful one I've experienced, and more of around a 3-4cm sized blot.
In reference to the tests I had that showed a bowel infection, I was seeing a doctor that was more interested in getting you out of the room rather than actually helping or explaining. I assume it would have been a standard stool analysis or O&P. He never gave me the results in hard copy, and being young at the time, I just did what the doctor said and didn't think to ask for a copy. The doctor I'm seeing now is much better and actually explains results and reasons for the results. After studying health in various departments I have also learnt to ask more questions about the reasons certain things are happening, and have a better understanding of the causes and reactions. I also learnt to do some of my own investigating (without self diagnosing) and not give up without getting second opinions. Sometimes doctors are purely lazy.
The RA I have had for close to 2 years now, but only recently got formerly diagnosed because my previous Rheumatologist was lazy and only interested in making money.
Your input has made me feel better, in the fact I now feel like I was right in wanting to know more instead of just accepting what I have been told by the doctor after not having a lot of investigation.
I would also just like to mention that I wasn't looking for sympathy, just advice. Sometimes real-life sufferers are better experts than doctors, and U'd rather get advice from someone who has been through this (and obviously worse), and can give me advice as to what to do next, or even just what to ask the doctor to make sure it gets investigated properly. I have a distant friend who suffers from Crohn's, but I don't know a lot about it myself. He's not at the stage where he can talk openly about it, and I don't want to pry. Besides, I'd probably feel quite embarrassed going to someone I know personally and saying "hey, I have this hole next to my anus, know what it is?"
So thank you again for the advice. I do have a lot of my medical information floating around, I'll definitely get onto putting it all together in a file
02-11-2017, 10:40 AM   #5
chantelle9294
 
Join Date: Feb 2017
Yes. I would ask your doctor to do further investigation into the possibility of IBD.
Thank you. I will definitely be doing that Monday
02-11-2017, 10:51 AM   #6
ronroush7
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Location: vienna, Virginia

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Welcome. Let us know what you find out.
02-11-2017, 10:52 AM   #7
chantelle9294
 
Join Date: Feb 2017
Welcome. Let us know what you find out.
Will do
02-11-2017, 11:34 AM   #8
cmack
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Location: British Columbia

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Welcome Chantelle,

Sorry to hear about the trouble you are having. I think you need to see a doctor. yes it could be a fistula but I hope not. They are no fun. The sooner you get it looked at the better. You are not a hypochondriac something IS going on. I have to avoid T.P. myself and use the shower wand and a finger(no soap it will only hurt) to clean the rear end. I think you could try that too if you want to have less pain. My Surgeon told me to wash my hands before touching my rectal area as there are certain germs that don't belong in that area and can make matters worse. Hope this helps

Wishing you luck and a speedy recovery,

cmack
02-11-2017, 11:49 AM   #9
Walt
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Join Date: Mar 2010
Location: Ontario

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Hiya C,
I hope you do not have IBD!
It was not personal judgement of you.
Many come here for attention, it is part of "it".
If you want help, we can help.
If you call doctors lazy, etc buck-motivated etc
and then do not follow-up with appropriate action of your own,
it darkens the conclusions drawn by would-be helpers.

eye-rape warning:
A hole next to your anus which weeps is possibly a fistula.
at various times, it may or may not leak green, red and/or brown.

If it stops draining, it becomes an abscess.
For most that is a medical emergency.

When it drains, I keep a wad of tissue in my back crack.
Purulent drainage is what doctors call puss.
It is green & sticky and smells unmistakably bad.

Hemmies can cause bleeding and drainage too.

If I were you, I'd find a doctor willing to request certain blood tests.
Hold the orders in abeyance.
Wait until your personal symptoms are at their worst.
Submit to blooddraw the next morning.

Ideally blood is drawn at peak trouble to evaluate inflammation levels.
It is not foolproof, but it is the place to start.

My personal Crohn's disease is not typical.
I can be wicked flaring whilst my labs are okay.
For most, those markers are much more meaningful.

The abnormal body-opening on the surface is only part of the picture.
The part you see, hints at what cannot yet be seen.
Sorry, it is not good, never good.

I want to be clear, it is not time to panic.
It is time to start a pointed exploration for perianal disease.
The "new" hole is smoke.
It seldom happens without fire.

I hid from doctors for a long time.
Total tissue damage accumulation during that period was expensive.
I did the best I could in that time.
I speak with you in the hope that you will seek a qualified doc to begin to figure-it-out.
Treatment is better sooner than later.
I played that one wrong, and hope you can do better.

keep it clean at all costs
good luck with it,
w

ps
time for new, specific blood tests
and a digital rectal exam by a strong GI
: D
02-11-2017, 12:34 PM   #10
chantelle9294
 
Join Date: Feb 2017
Welcome Chantelle,

Sorry to hear about the trouble you are having. I think you need to see a doctor. yes it could be a fistula but I hope not. They are no fun. The sooner you get it looked at the better. You are not a hypochondriac something IS going on. I have to avoid T.P. myself and use the shower wand and a finger(no soap it will only hurt) to clean the rear end. I think you could try that too if you want to have less pain. My Surgeon told me to wash my hands before touching my rectal area as there are certain germs that don't belong in that area and can make matters worse. Hope this helps

Wishing you luck and a speedy recovery,

cmack
Thank you.
Monday I am heading straight to the doctors after work no matter what.
I have heard that some people use the shower wand and a hair dryer, especially after hemerrhoid ops.
I've studied pathology collection (aka phlebotomy to some people) and am currently studying nursing so hand hygiene is a big one with me. I know all about the natural flora outside our skin that should not be inside our skin, so definitely keep up the hand hygiene!
For the most part it's bearable to wipe. If I'm having a particularly runny day it get's fairly painful but I can usually manage by forcing myself to be more gentle. At the moment it's hard to even pass wind without pain though. I'm very much hoping for not a fistula as well, and a speedy fix. I'll be sure to let everyone know once I find out though
02-11-2017, 02:54 PM   #11
cmack
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Location: British Columbia

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Chantelle,

Right on bud. You are on the right track.Feel free to reach out to me any time. I have a lot of experience with this kind of stuff(unfortunately).

All the best,

cmack
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