I knew I wasn't crazy

[bethyd78]

Hi I am Beth just discovered this site. I have been seeing drs for approximately
12 years and have been having problems with my GI tract. I am on Pentasa 500mg 4 times a day. I can't take prednisone or entocort bc I literally became insane.
The diarrhea nausea and abd pain is almost intolerable. I need someone to talk to
about this illness that understands. It is very difficult to make people understand
how hard it is to live with this cd. For years my GI dr has been going from telling me nothing is wrong to maybe cd or uc. I have made literally more than 100 visits to the er with being told there is absolutely nothing wrong with you, there is no reason for you to be complaining of the pain after being worked up all that would show up was increased wbc count. Last week or so my GI doc did a prometheses test and it showed definatively I have cd. So I wasn't crazy ( I went to one hospital and looked at my medical record and was appalled at what they said about me, they judged me) As a nurse we are taught never to judge a pt. And
to just document the facts. I am really relieved to find out that I have something.
So lets get on with it. Thanks for listening. Not feeling Crazy anymor

 

[teeny5]

Welcome to the forum Beth! Hope you find the support you need here...I did!

 

[GoJohnnyGo]

Hey Beth!

Don't worry about being judged here. Lots of similar shared experiences in that regard.

Sometimes fighting to have your credibility is as uphill a struggle as fighting the symptoms.

 

[Colt]

Great to hear we've got another medical professional joining us. I think soup and I both have been fading in our activity due to our conditions getting worse lately.

I'm not surprised at all to hear your doctors were judging you. As much as you're drilled never to consider anything but the facts biased opinions and stereotypes reign supreme more often than not. Even after I've gotten my crohn's diagnosis I have to be treated like a hypochrondriac and have every new doctor that sees me think I'm lying to them.

When I was a teenager they mostly decided I was complaining about abdominal pain just to skip school. Now it's that if I went 6 years without regular medical care I couldn't possibly have something as serious as crohn's disease. Ignore the fact that the only reason I didn't get medical care was that I was too poor to pay for it and every free or income-based clinic I tried sent me away because crohn's disease was too serious for them to treat.

Hell, the new doctors even insult the judgenment of my old doctors in my medical records. Doctors that they've never even met of course. The fact that my medical records got so old that they were disposed of to them just means that those tests and records never existed and I'm lying.

I'm quite obsessed with keeping my medical records now and since I work in pathology and I'm right down the hall from the medical records office, I get my clinic notes the day after the doctor writes them and I get the test results before the doctor does. You wouldn't beleive the BS I've seen in those records and the BS they've fed me later when they didn't realise I knew what the test results were.

I can't wait for the next visit 10 days from now when they decide that the chronic GI bleeds I've had since they took me off of my prednisone were me shoving a knife up my ass or something and seceretly diagnose me with munchousen's. If I wanted to be sick I certainly would be. I'm handing the blood of people with HIV, Hep C, and just about any other infectious disease you can think of on a daily basis.

Frankly the problem is that crohn's is a complex disease that requires a good deal of intellegence and dedication to diagnose. I've found few doctors that intellegent or dedicated. Even fewer are both. Crohns doesn't show up on most tests, even if you test positive now you probably won't 6 months from now (only 1 in 6 colonoscopies of previously confirmed crohn's cases show up with active disease), there is no definitive test (the prometheus test is used to differentiate between UC and CD, not as a definitive test for either), and the symptoms come and go in whatever form and severity they please.

It's so much easier to diagnose people by looking at them than by listening to their symptoms and conducting a large set of tests. I'm sure you're familiar with every female being diagnosed with depression by default before the doctor enters the room, every middle-aged person being diagnosed with arthritis, every old person being diagnosed with alzheimer's, every young woman is pregnant, every young male is a drug user, every child has ADD, and so on.

Sadly the fight to have your disease recognised and treated never ends. We had someone just recently who had a resection and was told by his surgeon that he was cured and could stop taking all of his medications. Every time your symptoms change, you come out of remission, or change doctors it's not going to be crohn's and there's nothing really wrong with you. So then you've got to prove it to them all over again. If it took a year to get it diagnosed last time expect about a year to prove it the second and third times.

 

[jamie2462]

Girllllll lay it all out... I don't know about these other awesome people (WHICH THEY ARE) but I no longer have any shame or dignity and will talk about anything. Believe that. And I hear ya...some of my ER visits literally had me leaving in tears of frustration. You can tell us anything.

 

[Colt]

This is one of the few places where you're going to find that almost everyone has shared any embarrassing, frustrating, depressing, or even positive experience you've had. It's really a great place to get out whatever you wouldn't talk about among people in the rest of your life for fear of ridicule or embarrassment. All those things you have pent up that you want to get off your chest but just couldn't stand to tell normal people about, just let it out.

Poop your pants? Yeah, us too. Can't stop farting? Hell, we could fuel an entire orchestral performance with our combined gassiness. Have parasitic worms? We've even got an ongoing, in-depth, mature discussion about that about that. Need tips on how to clean up the poo oozing from your your genitals? Hey, we've got 101 home remedies waiting for you. There's practically nothing that's going to shock us and we're always ready to toss in the advice, help, and support a person in your situation needs, because we're there too.

 

[kello82]

AMEN to jamie and colt just now!

welcome to the forum beth!

 

[bethyd78]

Dear Everyone who responded,
Thanks yall its great to have someone to talk to. Right now my bowels are ok.
But I'm suffering real bad with aches and pains in my back and ribs. I am taking Zanaflex and Darvocet a muscle relaxer and pain pills. Anyone have any suggestions.
Thanks
Beth

 

[Kittee]

Welcome.

You are not crazy. Unfortunately I think most of us have been there and gone through similar things.

This disease is a life wrecker.

Socially, professionally and even personally in our own homes.

 

[kello82]

do you yet know what you have these pains?
i had some pains in my ribs/chest area for a while because of ulcers in my stomach and esophagus area. they figured out what it was by endoscopy. there is also a thread on here about a spine condition that is more common with crohn's, i dont remember the name though. i am unfamiliar with the condition and if your symptoms might match it.
but i definitly think that if the pains are bad enough for Pks then you should get it checked out.
good luck i hope you start to feel better

 

[mRae85]

Way to go colt, you really laid alot out there. Id have to say as emotional therapy in general just keep comming here, as colt said, you can openly talk about anything here! and no worries, it took 8 years for them to finally take me seriously.... I have a little joke for ya... did they try to cure your crohns with prozac and other mental pills also? :lol: ! Your main symptoms seem to go hand in hand with mine. Do you wake up alot in killer pain also? my Dr said it was a"gravity" thing. The worst of my pain is on my right side lower to mid area. When I got to look at the print out of the colonoscopy i finally was able to see for myself what the pain was, a big ulcer that was bleeding. I hate to say it but the thing is still there even with the meds and I'm about due for another colonoscopy, actually past due because they reccomend you get one each year just to moniter how you are doing. I'm kindda scared as to what it is going to show seeing as I am still in so much pain and it seems to be getting worse lately. feels almost as tho I'm not even on anything and like you the vomiting is insain, I'm tempted to move the computer to my bathroom at the moment, I've been up all night with pain and throwin up and blah!!!!