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I'm Beginning to go Crazy haha..

Past couple days have been the worst in awhile..possibly ever. It started out with terrible stomach pain then diarrhea then vomiting then fever then muscle weakness and overall dizziness and awful feeling. My stomach felt like someone was taking a knife from the inside and carving me up. It was terrible. My test results from my blood work and my upper GI were supposed to come back on Monday. My mom kept calling and they didn't get back to us till yesterday. Again..Normal. He told me last visit that everything points to Crohn's but its weird that all tests are normal. So he calls and talks to me while I am home from school for the 15th time. I tell him I feel awful and the vomiting and fever are knew so he thinks I have some kind of virus and to keep taking my medicine (WHICH DOES NOTHING) and that he thinks I have IBS...are you kidding me. I am 5'6 and 115 pounds..you can see my ribs its gross. I am so tired of this and hearing the results NORMAL. Seriously Crohns and Ulcerative Colitis run in my family. I feel like he wants to take the easy way out and doesn't care that everything fits Crohns..
 

Cat-a-Tonic

Super Moderator
Aww, I'm sorry to hear that you're so unwell. I really feel for you, I've also had numerous tests and mine also all came back normal. It's got to be one of the most frustrating things on earth to be so sick and to know that something is very wrong, but all of the test results say you're fine and normal. As hard as it is, and believe me I know this is easier said than done, you've got to try to stay positive and you've got to fight for answers. If your current doc says IBS in spite of your symptoms (you do NOT get weight loss and vomiting and fever with IBS!) and in spite of your family history of IBD, then I really encourage you to seek out a second opinion. Not all doctors are created equal.

If you keep vomiting and especially if things continue to get worse, please go to the ER - vomiting is not normal and could be a sign of a blockage. At the very least you are probably dehydrated and could benefit from some IV fluids and anti-nausea medication.

What medication are you taking? Is it something for IBS? Have you told your doctor that it isn't working?
 
He just thinks that the fever and vomiting were some sort of virus... Starting to get tired of all this flip flopping of well it all points to Crohn's but everything's normal... I can't go to school feeling like this but I also can't not go to school. I'm falling behind by a lot. I'm on Xifaxan and Hysocamine and Xifaxan is antibiotic for digestive system and Hysocamine is to relex the stomach. I tell him they don't work he just says to keep taking them..
 
Honestly it seems to me that all doctors can think of is viruses and infections! I was on maybe 6+ courses of antibiotics while all the while my bloods showed no infection. Seems to me like the doctors were MAKING IT ALL UP!
I also know that antibiotics will make your Crohn's worse! At least they did for mine. You want to restore the natural gut flora in your intestines, not kill it off!
I wouldn't rely on blood tests - they never showed anything for me. I know you're tired and weakened but maybe insist to your doctor that you want a CT scan. A CT can often show up inflammation in the intestines.

I would also recommend going to the ER if you're vomiting that much. I have gone there for much less!
 
Gotta love this crap that the medical system will give you. I agree with everyone here, fight for answers, don't let them blow you off. Have you had a colonoscopy/endoscopy done?
 
yeh exactly docters suck, i was 16 and i had every symptom of chrones disease and they stil thought was peird pain they waited til i was 35 kils couldnt walk i was on my death bed ended up being 18 then chronic pain it was horrible, now ive had more then half my bowle cut out and i got it really bad coz they didnt treat me earlier makes me soo angry coz i new i had it but they wouldnt listen!!!!! i would really like to find sum ppl that are like my age that has it please comment back
 
ouch...that is frustating. It seems nobody will listen to you and your feelings. Sorry to hear that. I was also diagnose with my firs doctor of having FMF and out of luckkkk the doctor was transferred to an other so hospital so....yeah!!!!! new doctor..... all test are renewed, and this doctor found out that I have Crohn, so I think you should ask for an other opinion.
 
I have had a colonoscopy, blood work, stool samples, upper gi, ct scan and I think thats it... Theres been so many I don't know anymore. And yes I am always tired and dizzy and I get this terrible stomach pain that makes me lightheaded and like I'm going to pass out. Honestly its ridiculous for them to think I have IBS when I just know thats not the case. Just because my tests come back normal doesnt mean I'm fine I wish they would just listen...Im getting sooo skinny its gross my ribs are starting to show through my clothes...
 
hey - I am in the same boat as you - just got back from ER. My roll up by the bedside ultrasound showed nothing and the x-rays...ditto. Keep coming back here Molly and keep fighting for answers. Hard to do when you feel crappy - I know... but if you can get someone to advocate on your behalf that helps.
I called the doctor on-call and he told me to use gravol for my nausea and emugel on top of the pain (over the counter). You're not taking it orally...thats all they said I could do for pain.
Good luck...and hope you continue using support from here -
Wendy
 
I feel for you its awful and no matter how well you explain it to the doctor he will never know. Its just depressing because I'm 16 and this is when i'm supposed to be having fun..it sucks seeing my friends go out and have lives when I don't have the time to have a boyfriend or going to hangout with anyone because I always feel awful. It sucks that after the test is over and they say well it all looks normal... I'm actually hoping for Crohn's as dumb as that sounds because it will prove that i'm not crazy!
 

AndiGirl

Your Story Forum Monitor
I was told many times before being diagnosed that my tests were normal. I would find a different doctor.
 
Past couple days have been the worst in awhile..possibly ever. It started out with terrible stomach pain then diarrhea then vomiting then fever then muscle weakness and overall dizziness and awful feeling. My stomach felt like someone was taking a knife from the inside and carving me up. It was terrible. My test results from my blood work and my upper GI were supposed to come back on Monday. My mom kept calling and they didn't get back to us till yesterday. Again..Normal. He told me last visit that everything points to Crohn's but its weird that all tests are normal. So he calls and talks to me while I am home from school for the 15th time. I tell him I feel awful and the vomiting and fever are knew so he thinks I have some kind of virus and to keep taking my medicine (WHICH DOES NOTHING) and that he thinks I have IBS...are you kidding me. I am 5'6 and 115 pounds..you can see my ribs its gross. I am so tired of this and hearing the results NORMAL. Seriously Crohns and Ulcerative Colitis run in my family. I feel like he wants to take the easy way out and doesn't care that everything fits Crohns..
Hi I am new to this site and just want to say it took me three years of agony before the doctors took me seriously, I was told I was anorexic and then had IBS, what a joke!
 
I feel the same.....going CRAZY with worry.....
,though its my daughter who's suffering...which is worse...if i could take away her pain and have it myself i would!!
I am still awaiting blood tests for her.....meanwhile,although she is still having diarrea sometimes,(not as bad as last week though)and tummy pains....(usually after she's eaten).....she has actually perked up....all mouth ulcers,eye infections and bleeding have gone,(for now)
but this has happened several times and I know it wont be long before the whole thing will start again....this must be why they call it flare ups......it does seem to just come on all of a sudden
doctor still says its constipation,her bowel feels full....but she has been like this since last summer......i hope it is just constipation
he has taken her off movicol (if he was so adamant it was constipation,why would he stop the movicol?) and she has to carry on with the lactulose......
she hates it as she gets severe tummy ache then diarrea for a few hours after taking it...
it surely cant be doing her any good.......
im losing my mind with guesswork......really hope the results come back tomorrow and if they are normal i still want her referring to a paediatrician and a possible CT scan
 
Reply to MollyPP

Dear Molly PP.
I've had crohn's for 11 years, I'm 19, I figure you're younger too?
Everything you've said does point to Crohn's! And it runs in my family too. My grandmother died of bowel cancer, my mum had ulcerative colitis, my two aunties have something similar and my cousin has Crohn's and his daughter was born with a twisted bowel and is now suspected to have Inflammatory bowel disease.

Don't give up, you must be so frustrated! Have you had investigatory surgery? like colonoscopy, endoscopy? Do you get blood when you go to the toilet? that's a big indicator for something like this. It definitely doesn't sound like IBS though. It must be so annoying to hear your pain cast off as a common ailment!

Pressure them to do more tests, the more you complain the more gets done, don't suffer in silence because they've made your illness seem like nothing!

Hope you get better!
xxxxxxxxxxxxxxx
 
I'm 16 and the first thing they did was colonoscopy endoscopy then stool samples then i think ct then upper gi and lots of bloodwork..All coming back NORMAL. Its like there trying to make me feel like i'm crazy and its all in my head. I have mouth ulcers and blood in stool and overall feel terrible
 
That really does sound like Crohn's! Or maybe ulcerative colitis?
my mum has ulcerative colitis and when she's ill she gets mouth ulcers too.
Have you tried seeing another doctor? have you had a barium enima? you have to drink this gross stuff then have an xray and it shows up if you have any inflammed parts, it's worth asking about, just to try!
hope you're okay
xxxxxxxxxxxxxxxx
 
My aunt has a really awful case of Crohn's and my two uncles have ulcerative colitis (all on my moms side) and I haven't had a barium enema I'll ask...Most likely going to get a second opinion because I don't fit the symptoms of IBS...so annoying and frustrating to hear that its all normal and that i must be making it up all in my head because all the tests show nothing.
 
I am now looking for a new GI doctor that accepts my insurance. I have a flare up with my Crohns, been bleeding internally now for over 2 weeks. Finally, was told my my family doctor, who by the way is doing absolutely nothing for me including giving me Citrate Magnesium and see if that helps if not to go to the ER. I ended up going to the ER last Tues, with a distended abdomen, chronic pain, diarhea, vomiting, and bleeding internally, ran a bunch of tests including the Colonoscopy and Endoscopy, which he said was normal. Was admitted for 3 days, the day the doctor did the test sent me home with no meds at all and said that everything was fine except that my stomach was inflamed and took a biopsy. As I was leaving the recovery room he patted me on the head like a little kid and said I am normal and no Crohns was found. Talk about frustrating. I am still vomiting and still bleeding internally. Told me to make an appointment with the GI office in a week and not scheduled to go back for 3 weeks. This is horrible, what am I suppose to do, my abdomen is still extremely distended like I am 9 months pregnant and still vomiting and bleeding internally as there is blood in my stool.
 
I know from like years and years of blood tests and stuff that when you get diagnosed with Crohn's (or look for if it's active), they do a full blood count and look at your "erythrocyte sedimentation rate" and your "serum C reactive protein levels". If you have this kind of illness which is auto-immune, the results should show these two things to be high because they indicate inflammation. Ask your doctors about it. I've always found that the more I can ask doctors about stuff the more they respect you and that they know what you're talking about because to be honest, i don't think they really know much about it! Crohn's is a bit of an enigma.
Also, when I was diagnosed it was mainly because of lesions in my ilium and small intestine which showed up on an endoscopy/colonoscopy. I then had an MRI and a barium feed ( I said barium enema before, but sorry I meant feed. enema is putting a tube into the rectum to show up inflammation in the colon but as my endoscopy showed mine to be in the ilium and small intestine, I had to drink this barium stuff instead, hence "feed") to show exactly where it was.
have you had any luck with the doctors recently?
xxxxx
 
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