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04-17-2014, 05:48 PM   #1
BellaVita
 
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New Here - May Have Crohn's

Hello everyone!
I'm a 20 year old female, and I am in for a colonoscopy next Wednesday.

We think it may be Crohn's due to some debilitating symptoms -
-horrible abdominal pain, to the point where I'm doubled over and can't walk. I'm in pain every single day now, usually during the entirety of the day.
-cracks up my butt crack, they make pooping painful
-blood when I wipe, although this may just be coming from the cracks. not sure.
-a sore (thing?) on the inside of my vagina, blood and perhaps other icky things have come out of it.
-frequent trips to the bathroom, although lately it seems I may be constipated. (but still going frequently, but TMI the pieces are hard so I think it's constipation)
-extreme pain every time I go number 2s, and it doesn't get better at ALL after I go.
-fevers out of nowhere every now and then

My brother has Crohn's so that's another reason I'm getting this checked out.

I'm really nervous the thing in my vagina may be a fistula.

Anyway...I'm sick and tired of being in pain and ready to get whatever this is treated.

So glad to be a part of this community!
04-17-2014, 05:54 PM   #2
theOcean
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I have a fistula, if you have any questions about it. I also know that one of our members on the forum here, kello82, has a rectovaginal fistula and she could probably tell you her experiences with it.

Have you had anyone examine what you think might be a fistula? Mine was peri-anal, but my GP took one look at it and sent me to the hospital to get it drained. It sounds like yours may have already burst, though. Which would be another good reason to go to the hospital, rather than waiting for a colonoscopy.
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04-17-2014, 06:03 PM   #3
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Hi Bella, I'm Kat!

If you seriously think you have a fistula it maybe a good idea to go to the hospital. Please don't let it get infected. I'm glad you found us though and you're ready to accept treatment, when people run from their CD it get just gets worse and they get even sicker. Those cracks are they are likely the cause of the bright red blood because blood rapidly darkens in the digestive tract, dying your stools a black with hints of green when it's wiped off.

I hope you get answers and some treatment!
04-17-2014, 06:05 PM   #4
BellaVita
 
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I have a fistula, if you have any questions about it. I also know that one of our members on the forum here, kello82, has a rectovaginal fistula and she could probably tell you her experiences with it.

Have you had anyone examine what you think might be a fistula? Mine was peri-anal, but my GP took one look at it and sent me to the hospital to get it drained. It sounds like yours may have already burst, though. Which would be another good reason to go to the hospital, rather than waiting for a colonoscopy.

Thanks so much for your reply.

No, when I went to the GI doctor I was too afraid and embarrassed to mention it...but I didn't know about fistulas then and then came back home and researched and felt like an idiot.

Thanks for the info. It's been there for about 5 weeks.

I would go to the hospital but can't afford it right now.

Although I know my health is more important...I sure hope it hasn't burst. (whatever "it" is...)
04-17-2014, 06:09 PM   #5
theOcean
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Thanks so much for your reply.

No, when I went to the GI doctor I was too afraid and embarrassed to mention it...but I didn't know about fistulas then and then came back home and researched and felt like an idiot.

Thanks for the info. It's been there for about 5 weeks.

I would go to the hospital but can't afford it right now.

Although I know my health is more important...I sure hope it hasn't burst. (whatever "it" is...)
Please, please call your GI back and tell him you suspect you have a rectovaginal fistula. If you're already getting stuff coming out of it, there's a possibility it's already burst and you may need it treated, or at least to be put on antibiotics for it. Especially if you've had it that long already. The longer you wait, the worse it can get -- mine landed me in the hospital and was so badly infected that I nearly died. I don't mean to scare you by saying that, but I do want you to understand that it's very important to get looked after as soon as you can.

Depending on what your GI thinks, he may tell you to go to the hospital as well, but hopefully not.
04-17-2014, 06:09 PM   #6
BellaVita
 
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Hi Bella, I'm Kat!

If you seriously think you have a fistula it maybe a good idea to go to the hospital. Please don't let it get infected. I'm glad you found us though and you're ready to accept treatment, when people run from their CD it get just gets worse and they get even sicker. Those cracks are they are likely the cause of the bright red blood because blood rapidly darkens in the digestive tract, dying your stools a black with hints of green when it's wiped off.

I hope you get answers and some treatment!
Hello Kat!

Thanks, I'm going to discuss with my boyfriend tonight the possibility of it being a fistula and going to the hospital.

I'm glad I found you all, too!

Ah, that makes sense.
04-17-2014, 06:15 PM   #7
BellaVita
 
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Please, please call your GI back and tell him you suspect you have a rectovaginal fistula. If you're already getting stuff coming out of it, there's a possibility it's already burst and you may need it treated, or at least to be put on antibiotics for it. Especially if you've had it that long already. The longer you wait, the worse it can get -- mine landed me in the hospital and was so badly infected that I nearly died. I don't mean to scare you by saying that, but I do want you to understand that it's very important to get looked after as soon as you can.

Depending on what your GI thinks, he may tell you to go to the hospital as well, but hopefully not.
(TMI alert) It's like blood and perhaps some "goo"...but I'm not passing wind from there nor is there poop...

But you're right, I have had it a while. I didn't know it could be so serious....

That's so scary what happened to you.

But I do understand your point. Yeah, I will give the GI a call when they're open tomorrow.
04-17-2014, 06:16 PM   #8
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If you need to go to the hospital as someone who can't pay try to avoid private hospitals, they're businesses who are very unlikely to ever drop charges even if the patient has no hope of paying. The best would be a nonprofit hospital, especially one with a religious backing, if you make at least a good faith effort to pay it off they can often be talked into lowering bills or discharging debts. If you can't do that, student hospitals are somewhat cheaper but don't expect good care, but at this point that's better than leaving a possibly burst/infected fistula untreated.
04-17-2014, 06:55 PM   #9
BellaVita
 
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If you need to go to the hospital as someone who can't pay try to avoid private hospitals, they're businesses who are very unlikely to ever drop charges even if the patient has no hope of paying. The best would be a nonprofit hospital, especially one with a religious backing, if you make at least a good faith effort to pay it off they can often be talked into lowering bills or discharging debts. If you can't do that, student hospitals are somewhat cheaper but don't expect good care, but at this point that's better than leaving a possibly burst/infected fistula untreated.
Thank you for that!

I'll keep that in mind.

So talked with boyfriend, he was very concerned and wished I had called this morning.

Definitely calling first thing tomorrow.
04-18-2014, 12:30 PM   #10
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Please let us know how things go!
04-18-2014, 03:36 PM   #11
BellaVita
 
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Okay - so I called this morning.

I spoke with a lady, and explained how I think I may have a fistula - she said "if it hurts then it can't be a fistula."

Hmmmm....
04-18-2014, 03:37 PM   #12
theOcean
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...My fistula caused me so much pain I couldn't sit, walk, or comfortably lay down. So that's completely wrong.
04-18-2014, 03:41 PM   #13
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Your description sounds just like a fistula. Thats depressing that they just wavered it ... well I hope you get it figured out... you should pester them more
04-18-2014, 03:55 PM   #14
theOcean
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Agreed, you should try and contact them again. Was the lady a nurse in the GI's office, or your actual GI? Because if that's the advice you're getting, you should speak to someone else.
04-18-2014, 03:55 PM   #15
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Fistulas cause pain, lots of pain. That's bullshit.
04-18-2014, 04:24 PM   #16
BellaVita
 
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Good to know that they can cause pain.

No, it wasn't my GI. It may have just been a nurse. (she didn't say)

I hope it can wait until Wednesday....
04-18-2014, 04:39 PM   #17
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Do you have your GI's email? They'll usually reply to those personally.
04-18-2014, 05:17 PM   #18
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I have fistulas, they generally don't hurt at all. Abscesses, on the other hand, hurt so bad I couldn't sit for a month. Abscesses need to be drained, to get the pus out. Fistulas are open and already draining. I am on azathioprine for my fistulas. For vaginal ones, I think they can also do surgery to try to close it. You should definitely speak to your GI soonest, I don't think they show on a colonoscopy. Mine showed on an MRI.
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04-21-2014, 09:41 AM   #19
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Hey,

I'm afraid I can't really offer any advice about the fistula - plus getting the hospital etc is different here in the UK. Sounds awful though and I've heard they can be agony, so don't take that crap from the nurse trying to fob you off!

In terms of your possible CD, I have the same problem with bleeding and feeling constipated. I tend to feel blocked up for 2 days or so, then it all comes out like a paste (if I'm 'lucky') or loads of hard lumps too. I've had a tear of the anus, or somewhere around my bum lol and it's pretty painful, bright red blood too. The Drs are doing the right investigations and taking you seriously, just the waiting game. Frustrating and exhausting though.

xxx
04-21-2014, 03:44 PM   #20
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Hi Bella! I'm so sorry. Try some peppermint tea for the stomach pains...I swear by it...I had a upset stomach on Saturday night and I just kept drinking peppermint tea and felt so much better. Hang in there and I hope you feel better soon!
04-22-2014, 01:15 AM   #21
BellaVita
 
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Thanks so much guys!

I came down with a sore throat and cold on top of this (a walk in the park though compared to) so haven't been on.

Prep day is tomorrow, yippee.

And thanks CrohnsNewbie2 for the idea of the peppermint tea - I shall try that.

I have a question - will the colonoscopy make my fissure worse? (Is there the possibility it could rip it open more?)

Thanks! You all have been awesome!
04-22-2014, 01:20 AM   #22
theOcean
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I found it didn't really make my fissure worse, but I had a lot of soreness. But that was more from my fistula than anything else. Loose bowel movements are easier on them.
04-22-2014, 01:30 AM   #23
BellaVita
 
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I found it didn't really make my fissure worse, but I had a lot of soreness. But that was more from my fistula than anything else. Loose bowel movements are easier on them.
Oh my I hadn't even considered the prep. But yeah, hopefully since it's "loose" it will be easier on it....

I have a feeling this is gonna be really crappy. (haha...)

Edit - Prep starts at 3:00pm tomorrow. Should be interesting.
04-22-2014, 01:37 AM   #24
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It'll will be painful, if you have active inflammation it will seriously annoy it and put you in pain. Also what kind of prep do you have? Some of it is seriously nasty tasting stuff.
04-22-2014, 02:00 AM   #25
BellaVita
 
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It'll will be painful, if you have active inflammation it will seriously annoy it and put you in pain. Also what kind of prep do you have? Some of it is seriously nasty tasting stuff.
Okay. Thanks for the info.

I'll be taking Miralax prep and Dulcolax.
04-22-2014, 02:18 AM   #26
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Oh thank goodness. The ones where you drink a gallon of liquid are really vile.
04-24-2014, 10:52 PM   #27
BellaVita
 
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So I got the colonoscopy done they said it's Crohn's and they want me to go in again in a few days to swallow a camera as they think I also have Crohn's in an area they couldn't reach.

**Anyway - I'm at the ER right now because I began developing this severe pain soon after the procedure in my upper back right side, and then sometimes it goes to lower right back. (And when it does this, it hurts THE WORST)

They did a CT scan yesterday cuz I actually went to the ER yesterday after I developed the pain...they couldn't see anything.

But they found blood and mucus in my urine.

And then TODAY is where my pain has been mostly 9-10 (the worst pain I've ever had - and that's pretty bad as I've had cysts rupture before with internal bleeding).

I've had 2 shots of morphine as first one didn't TOUCH the pain

They haven't checked my urine this visit but I'm concerned about there being blood and mucus in it yesterday.

They don't seem to be concerned and said "that happens with Crohn's." That it could be referred pain.

Does that make sense? They're actually discharging me now with pain meds and told me to call the surgeon tomorrow, and see if I should go back in.

Sorry if this post made no sense I'm quite out of it.
04-24-2014, 11:00 PM   #28
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You were perfectly understable, don't worry.

It's possible you're developing symptomatic endometriosis. It's a condition common in ciswomen but usually asymptomatic (unnoticeable) but women with Crohn's Disease are more likely to develop serious symptoms. It could still be an abscess or infected fistula and you need to contact a gynecologist and get the area examined because any of those three issues requires medical intervention.

In any case, officially welcome to Crohn's Disease! The fact they want to go farther up means they suspect it's either also in your duodenum or the actual bulk of the small intestine. If they officially gave you a CD diagnosis I'm surprised you didn't walk out with prednisone and some form of 5-ASA with you.
04-24-2014, 11:22 PM   #29
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Thank you for responding, Kat.

Thanks for the info, didn't know about that and don't know much about it.

I don't know why they didn't start me on meds yet, either.

Ironically my brother who also has Crohn's is in the hospital right now too.

I'm concerned my GI isn't that good, he hardly explained much about how the procedure would affect me after. And so didn't know all this pain after would be here. And they checked my urine but never told me about the blood and mucus while the ER doc did.

The GI doc said they found sores (ulcerations) and inflammation.
04-25-2014, 02:06 AM   #30
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Almost threw up gagged a few times...feel like throwing up still.

Found my Phenergan think I'll take it....
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