# What is wrong with me :(



## Amy26 (Aug 15, 2007)

Greetings and salutations... I am new here and was hoping for a little guidance and support. 

I think I may have crohns but I'm not sure (I will go to a GI doc soon I think) ... I've been having problems (that are noticeable) since about April.  It started off as more vaginal issues than rectal... I was having UTI symptoms, yeast infection symptoms, vaginal pain, stomach pain, diharreah (some time complete liquid) and these lovely things that have been annoying me for ages...  vaginal papercuts.

Well the OB could never figure out what was wrong with me... all my tests were always negative and they could never find anything wrong with me.  I've had STD tests, herpes tests, lupus tests... all nothing.

I must also add that I'm constantly tired and I get random flu like symptoms every now and then.  A few months ago I was being seen by the Dr. and he said by the way, did you know you had a fever?  Just two days ago, I was sick with a fever and today I find a vaginal papercut again.

I never saw the corrolation... but I have had a lot of bowel / intestinal problems on and off.  I go from dihareah to constipation and then somewhere in the middle.  For awhile I was having flank pain on my left side and my right side in the abdominal area.  I also have a terrible time with gas and generally I can actually feel my intestines in my abdomin "moving" ... dunno how to describe it but its like I can feel them curggling as the stuff moves through them.  Also, is crohns associated with indigestion at all?  I seem to have been getting indigestion for no reason lately.

The other thing I have is joint/muscle/body pain... random pressure points will hurt or I will have achy parts of my body... my lower back near my butt will ache as well as my chest and certain spots on my arm has as well.

Then last week I noticed I had red blood on the toilet paper after I had a movement.  But I haven't seen anything sense then... 

So, I saw a new OB today and they did a biopsy of this papercut but she started telling me that I might have Crohns disease.

I'm a little confused because I have read up on it and a lot of my symptoms do seem crohns like... but I have read some posts on this forum and it doesn't seem like my case is anywhere near as severe as some of you guys.  I'm just really freaked out and very upset... I start crying at the drop of a hat these days because nobody can tell me what's wrong with me.  One doctor had me convinced I had herpes for a while...  I'm also only 29 years old.

Anyways sorry for the long post... thanks for reading it


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## ronyan (Aug 15, 2007)

Hi Amy. Crohn's disease can present differently in different people. Symptoms can vary pretty widely from person to person. 

Here's a list of symptoms that I originally presented with (my very first symptom was abdominal pain):
- lower right burning abdominal pain just below the ribcage
- bright red blood in stool with pain during a bm
- low grade fever
- night sweats
- rapid weight loss
- diarrhea (sometimes bm would start solid and be completely liquid at the end)
- bloating and gas after mealtimes 
- exhaustion 

I was diagnosed based on inflammation discovered after an upper endoscopy and colonoscopy. I would encourage you to see a GI doc and get evaluated/tested more thoroughly as this is not the place for a diagnosis.


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## Jeff D. (Aug 15, 2007)

Have you known any foods that trigger you to have stomache pains or any other sign.  Keep a food journal so you can see what affects you.  As Ronyan said symptoms vary some people feel no pain but have constant D, others have constipation, so you see I can't even tell you about all of the stories but if you read through the Your Story section then you should see.  Anyway best of luck and also welcome to the forum.


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## soupdragon69 (Aug 16, 2007)

Hi Amy,

Welcome!!

As the boys have said Crohn's can vary so much from person to person... I will say to you however that my crohn's gets worse round the wrong time of the month and also compounds any pain I have from either. Crohn's also comes and goes so it is very possible to have D one day and Constipation a few days later for instance. 

Muscle and joint pain or feeling drained or flu like pains can also be part of it. Sometimes its down to nutritional deficiency because you dont absorb well depending on where your Crohn's is and others its an extra manifestation of the Crohn's.

The gas and being able to feel things travelling through your gut is not a nice sensation and its something I experience too.

The best thing to do is go to a GI and keep pushing for answers til you get them. It IS very frustrating and I am sending you hugs to help you feel a bit better and know you are definately not alone.

What I would say is its SO important to go to a GI. From my perspective both my GP and GI thought I had coeliac disease, then I was diagnosed with Crohn's when all the tests were done and on recent hospital admission they realised I also have severe IBS!  It takes you working with the GI and telling them EVERYTHING you can think of to nail it in the end.

Hang in there and keep posting here, we will always listen ok?


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## Amy26 (Aug 16, 2007)

Thanks for the reply Soup... that was very helpful.  Of course I didn't come here to get diagnosed but was hoping to see if people had problems like me and if what I described was crohns like... problem I face noadays is that I can't just go to the dr. and say ok I have this this and this...what's wrong?  Cause they never seem to know.

I was hoping to see if anybody was having the vaginal papercut thing as I am.  I have read that crohns can manifest itself this way but it just seems so strange.
These things freak me out and it distresses me that no one can explain why I get them.

Thanks again


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## soupdragon69 (Aug 16, 2007)

Hi Amy,

I never suggested you did come here to get diagnosed and you have done what we all did in asking for folk who may have had something similar so nowt wrong with that and I wasnt critisicing (sp?) in any way...

This is why it IS so important to go to a GI for diagnosis because so many illness have similar symptoms which is why I told you what I had been through on that front. 

You deserve answers just as much as anyone else Amy and are right to ask and KEEP ON asking them too.

Take care.


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## D Bergy (Aug 16, 2007)

It certainly is possible you have more than one thing going on concerning your symptoms.  It is not unusual to have one problem that leads to an opportunistic infection of another kind.  Makes finding the cause even more puzzling.

I think you have the right idea in seeing the GI doc.  I had almost no symptoms until my stricture closed up.  I would never have thought I had a disease of any kind.  Yet others are in pain and have similar symptoms as yourself.  Crohn's varies so much it is hard to diagnose by symptoms.

You could try some harmless yeast reducing methods and see if it helps some of your symptoms.  It is more than just a yeast problem though.  I hope the GI doc will provide you with a diagnosis.  Then you can go from there.

Let us know how it goes.  Everybody here is willing to help if they can.

Good Luck

D Bergy


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## My Butt Hurts (Aug 16, 2007)

Everyone's symptoms vary SO much - I would say you'd never find a Crohn's patient with exactly the same symptoms.  They even vary for an individual person day by day.  Symptoms can run all the way from your mouth to your anus, and everywhere inbetween.  Aching joints, strangely, can be included in the symptoms.  Then you get side effects from the meds.  It's a good time!  (sarcasm)

I too have cried out of frustration.  Even at the doctor's office saying "I'm just so sick of being sick!!"  Believe it or not, I think that made them try and treat me more aggressively (the disease, not me personally.)

Here's something you may not have heard, which I only recently heard.  I guess there is a vaginal Crohn's.  I had a labial skin discoloration, and they were going to biopsy it.  My OBGYN mentioned vaginal Crohn's, and was going to send me to a labia specialist.  When I went for the biopsy though, it was gone - so I don't know anymore about it.

Anyways - welcome to the forum, there's lots to read and learn here. 
You DEFINITELY need to see a GI doctor though.
Good luck!


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## vickyoddsocks (Aug 16, 2007)

I get lots of problems with my 'womanly bits!'. lol!
I experienved the paper cut thing once, it correlated with having SEVERE thrush at the same time. (I couldnt walk!) Actually it all correlated with me having my last bad flare when i was in hospital and i kept on insisting to see a gynacologist (because i was just guessing it was thrush i didnt know for sure) but i never saw one. Luckyly it all calmed down. But i also have a anal-vaginal fistula which isnt alot of fun. 
But i often get really bad bouts of thrush, but it just gets put down the the azathioprine or infliximab (drugs im on) but like i said, ive never actuaally had anyone test me for anything (DESPITE me insisting!) So i was interested to hear about 'vaginal' crohns.
Oh well, apparently im being sent a referal to see a gynacologist, nothing yet, so we'll see. But i hope you find out for sure what it is, i know how horrible it is to just be told that they 'dont know' whats wrong with you! 
Take care! 
XXX


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## Amy26 (Aug 20, 2007)

Soup, no that wasn't directed at you...someone else had said that.

D Bergy, yeast?  I don't have a yeast problem at all. 

I don't think I have thrush either... hopefully my biopsy will show something... it still hurts like a @!##$^^ ... Sucks too I've had the runs all weekend and woke up this morning sweating with the covers not even on me and the ceiling fan running... 

Sigh.


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## Kev (Aug 22, 2007)

could there be a little mis-communication at play (in these threads) going on here? If I'm not mistaken, in the UK 'thrush' refers to a vaginal issue commonly called 'yeast' in North America.  Maybe what we need is an English to English translation dictionary? And I wouldn't be surprised if someone piped in with all or most of the latin names for the various types of 'yeast' commonly found in the human of the species, female and male.  In any event, since CD can be found anywhere from the mouth to anus, AND flora (or whatever you want to call it) CAN migrate from the anus to the vaginal area (which is why little girls usually are not only taught the critical importance of wiping/cleaning after using the toilet, but that the direction of same is crucial as well) it wouldn't come as a shock to hear that someone was dx'd with Vaginal crohns...  I'm assuming that it's called that simply because of the area of outbreak, and not because its' a separate family of the disease. I could be way off base here.....  Anyway, if anyone has hard/fast info on this, even anecdotal, it might be crucial info someone else could benefit from.  Even if embarrassing (hey, what aspect of this disease, regardless of it's location, isn't/wasnt' embarrassing)


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## D Bergy (Aug 22, 2007)

Maybe the word Fungus would be better.  I think you are probably right Kev, I was not sure how I interpreted that wrong but maybe we just have different terms.
Thrush = yeast or fungus, take your pick.  Fungus seems to often be involved with Crohn's.

D Bergy


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## Kev (Aug 24, 2007)

Hey Dan, I had a British grandmother, I was taught in a school system that used the UK dictionary as it's basis, yet grew up next door to the most influential country in the world (and its associated media/entertainment and news) and I get confused...
Despite a common language, the potential for mis-communication abounds here...

Hey, why don't we start an English to English translation dictionary for crohns in the lounge?  I saw a post where someone used a common UK term that has a totally different meaning in the US.. and I can't mention it here due to its nature.


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## killerzoey (Aug 26, 2007)

*Warning - Lots Of Chick Info*

Hi

I'm sorry to hear you're possibly going to be dx'd with Crohn's.  I wanted to chime in and say that I get those vaginal paper cuts from time to time.  But then, heh - I also have herpes.  I read on a herpes site that herpes lesions can represent that way when they are on delicate tissue.  So I always chalked them up to that.  However, I have noticed that I've been far more delicate down there in the last few years, making intercourse painful.  I recently learned that IBS can produce that discomfort, so it would not surprise me to learn that so could Crohn's.

I am curious whether your OBGYN said "it might be Crohn's" in response solely to the papercuts, or after learning of your digestive issues as well.

Also, what sort of herpes test did you have?  A blood test would tell you HSV-1 and/or HSV-2.  Either one could be vaginal.  If you had neither, of course, there's no chance you have it "down there".  A swab is not as accurate but a positive result would mean you definitely have it in the site swabbed (as opposed to the blood test, since either type of HSV could be oral or genital).

The fatigue and low grade fever we already know can be Crohn's.  I also had to be informed recently that I was running a low grade fever.  Made me wonder how often this happens.

I hope you get to see a GI soon.  Welcome to the forum - there is so much good support here.


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## antonia15 (Aug 28, 2007)

*misdiagnosed*

Hi
I am new to this forum but just wanted to share my story and confirm that Crohns or colitis CAN manifest as genital ulcers or sores. It has taken me 15 years to get this confirmed, so I wanted anybody out there whos got symptoms and is  not sure ,to insist your Dr looks at it as a possibility. 
I started with mouth and genital ulcers 15 years ago. The ulcers would last about 5 days and as they disappeared i would get a new crop. I was tested for herpes 5 times, all negative....tested for HIV...negative ...and I was tested for Bechets disease ....a biopsy(nice)...once again negative. After 6 months of Drs scratching their heads wondering what was wrong and insisting it was herpes despite my non response to anti viral treatment...the ulcers disappeared both in my mouth and genitals. Drs put it down to "one of those things" and told me to get on with life...which I did...until 13 years later. Oh yes...13 years ...and the genital and mouth ulcers came back with avengence. 
Once again all herpes tests and numerous others were negative. but the Dr kept repeating them all as if willing a positive herpes result to explain it all alway.  In  the meantime having genital ulcers was having a severe Psychological effect on me. The Drs kept asking"when was the last time you had sex?" Are they for real??! The last thing i wanted to do was have sex. I have been forced into celebacy. This was, and is devestating...i am only 42. Then came- what I can look back on now as- the breakthrough. I had been labelled as having IBS for 10 years and just coped with it. Sudennly i was passing blood and mucus..after a colonoscopy the results revealed ulcers in the colon. When I saw the photos I couldnt help thinking that these ulcers looked exactly the same as the ones in my mouth and genitals. Biopsy of the colon ulcers were inconclusive between Crohns and colitis. My gastroenterologist decided I had a mild form of Crohns and prescribed an enema. I asked him at the time if there was any connection between the mouth and genital ulcers and Crohns...? he told me the mouth ulcers yes, but definately not the genitals. He just dismissed it out of hand. In the meantime I decided to do some research on the Internet and discovered that there is a DEFINITE link between Crohns of the intestive and Chrons of the genitals which manifests itself as ulcers sores or papr cuts and can very often take a completely different course to the colon Crohns. ie if you treat the colon successfully it wont have any effect of the genital or mouth ulcers.
So this is where I find myself. Appaarantly we are a hidden but significant number of Crohns sufferers who have genital symptoms which are very hard to treat. These symtoms can often appear years before any intestinal ulcers -as in my case. I am fortunate that i have a mild continuing rumbling of Crohns but with the severe mouth and genital ulcers. At least the pieces are now fitting together even if it was me and not the Drs who made them fit.
The Drs hope that they may go into remission like 13 years ago but I wont hold my breath. I took the Crohns diagnosis in my stride but am now throughly wornout by the pain and stigma of these ulcers. I havent a partner, am celebate and often lapse into depressive thoughts. It feels like I have the plague. I know that i havent explored all the treatment options...the next step would be systemic(oral) meds. I am just fighting that as much as possible.
much love to all of you out there
XXX


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## soupdragon69 (Aug 28, 2007)

Hi Antonia,

Can I just say WELCOME to the site! So good to have you here and your thoughts. Very brave of you to give us your experience and really appreciate it too. Many of us here will empathise with your being celebate from a Crohn's/IBD perspective alone, along with body image and confidence issues too. 

Hang in there, things CAN get better. Keep searching and questioning until you get the right treatment for you!

We will always listen and help where we can too. Keep posting - am looking forward to hearing more from you.


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## Cara Fusinato (Aug 30, 2007)

Wow!  That's totally interesting.  I will chime in with my feminine woes too.  I keep getting bacterial infections of the feminine system.  I think I have it managed now.  But I also, for many years, have had some of the above-mentioned though it never ulcerates.  Just little nodules below the surface and they go away after awhile.  No one could tell me the cause of those, either.  Huh, let's keep insisting to our GYN's that they research, eh?

A note on Thrush . . . usually in the US, thrush is a wildly fungal or bacterial infection of the mouth usually after taking a long course of antibiotics.  It is not used in the US to refer to feminine issues.  And it is now coming out in the US that most of the time "yeast" infections are not the cause, but bacterial infections instead.  Yeast is the white discharge that smells like Bradford Pear trees in springtime (the big trees that have all the white blossoms commonly used in parking lots and home landscaping).  Bacterial infections are the itching, burning, clear discharge, and more urin-y kind of odor.  I got a lovely education in this a few months ago.

As to "papercuts", I never thought of them in that manner, but that is a good description.  Throwing antifungal creams in the area just burns and doesn't help.  Perhaps some of the prescription steroid creams might assist?


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## Kev (Sep 2, 2007)

OK, here I go again.. jumping in on a womans thread, like a bull in a china shop.  But I understand that there are several hundred different specii of bacteria in the colon, and making a hypothetical leap that similar number (albeit different specii) exist in the urinary tract, vaginal areas, etc..  but that ingesting probiotics would have zero effect on these (altho ingestion of cranberry juice is said to help in uti infections) one possible recourse that I've heard of (anecdotally, and NEVER in the 1st/2nd person) is the direct application of yogurt.  I've heard 1st hand of number of women who've digested yogurt to assist in healing 'yeast' infections (as to how it helps in this area I haven't the foggiest) but none that have tried application to the affected area directly.  Yet the rumour mill is full of stories that this method has worked for someone who knew someone who knew someone who had tried it.  It may be just an urban myth... or legend if you will, but the 'physical mechanics' of it does make some sense to this untrained, uneducated ol fart.  Keeping in mind that the key symptoms may have no correlation to an inbalance between the 'good' and the 'bad' bacteria levels...  and that even if it did, that it may take weeks of a treatment plan (if this crude method could even be called that) to start to work; and that there may be a simpler, better, easier way to introduce healtly bacteria to the area in question...  i.e. get the pro-biotics sans the yogurt constituent. It's pretty far fetched... and if anyone wants to beat me over the head for making such a lame suggestion, by all means go right ahead.  I can't tell if it falls within the "it's sooo crazy, it just might work" category, or just the "it's soo crazy, it must be Kev" category.  Just that, if the shoe were on the other foot, so to speak, and anyone out there had a 'hare brained' idea that MIGHT work, I'd at least consider it, OK?


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## Cara Fusinato (Sep 2, 2007)

Back in the old days before the OTC yeast infection applications were available, one could dip a tampon in plain yogurt and insert it vaginally and thus it would help readjust the local population of bacteria  in that region.  Taking cranberry orally does help UTI by changing the pH in the bladder and thus making it inhospitable for the bacteria that causes the UTI symptoms.  Eating yogurt after taking a course of antibiotics does help repopulate your bowels with positive bacteria species and to some digree, perhaps the urinary system as well.  You cannot cure a yeast infection by eating yogurt.  The systems are not connected.  The only thing that it would do is prevent a yeast infection via cross contamination.  Less bacteria in the urinary or bowel system would mean less chance of cross contamination during rest room visits.  The systems are simply not connected enough for cranberry or yogurt orally to actually affect the reproductive system other than in cross contamination situations.


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## Kev (Sep 2, 2007)

You have no idea how many women I know who eat yogurt daily as a preventative step to avoid 'yeast'.  Now, where/how this urban myth/home remedy got it's start, I don't know.. I just know that a plethora of woman aged late teens to mid eighties all swear by it...  unless it's a case of maintaining a good balance in the GI tract allows the body to focus on dealing with any problems in the UT, etc., all by it's own self.


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## Cara Fusinato (Sep 3, 2007)

Yes, it's pretty silly.  Think about it.  What goes into your stomach comes out of the bowel or the bladder.  The feminine system is completely closed and separate, not even sharing an exit location (like most animals).  How is it supposed to get in there and prevent anything?  Anything that would get into the feminine system would have to be inserted or work systemically.  Eating yogurt does not put good bacteria in one's blood system to then be deposited in the feminine system.  It would be like saying, oh, eating yogurt every day will help prevent athlete's foot.  Just not in a related system.  The ONLY thing it could mildly possibly and remotely do is reduce the bad bacteria in the bladder or bowel so that when you wipe, it won't contaminate and thus cause infection.  That's a pretty diluted kind of treatment, don't ya think?


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## Jen2529 (May 15, 2016)

Amy26 said:


> Greetings and salutations... I am new here and was hoping for a little guidance and support.
> 
> I think I may have crohns but I'm not sure (I will go to a GI doc soon I think) ... I've been having problems (that are noticeable) since about April.  It started off as more vaginal issues than rectal... I was having UTI symptoms, yeast infection symptoms, vaginal pain, stomach pain, diharreah (some time complete liquid) and these lovely things that have been annoying me for ages...  vaginal papercuts.
> 
> ...


Amy can you tell me what ever came of this? Did the biopsy tell you anything? My daughter is 8 with all these symptoms & no one can help her. I'm going to ask for a biopsy if that gave you any answers. Thanks!


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## ronroush7 (May 15, 2016)

ronyan said:


> Hi Amy. Crohn's disease can present differently in different people. Symptoms can vary pretty widely from person to person.
> 
> Here's a list of symptoms that I originally presented with (my very first symptom was abdominal pain):
> - lower right burning abdominal pain just below the ribcage
> ...


I agree.   Glad you found this place.  Let us know how you are.


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## ronroush7 (May 15, 2016)

Sorry.  Didn't pay attention to date.


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## Sarahsmith123 (Dec 4, 2016)

I know this is like 10 years ago but your situation is exactly!!! Like mine! I'm SO confused!


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## ronroush7 (Dec 4, 2016)

Sarahsmith123 said:


> I know this is like 10 years ago but your situation is exactly!!! Like mine! I'm SO confused!


Have you been to a doctor?


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