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My story....anyone else go through this

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Crohn's Disease
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Posted 4/21/2012 2:19 PM (GMT 0)
I have always had stomach problems that were always ignored because it was all in my head(so the doctors said)
about 2.5 years ago, I got really sick. Constantly running to the washroom, rashes all over my hands, muscle and joint pain to the point where i couldnt walk, I lost 30+ lbs in no time and so on.
Went to the doctors and she put me through all kinds of blood work and tests and they came back a mixed bag. I was extremely ammoniac, vit d deficient and most other vit levels were crazy too. My liver function tests have been crazy high also. She was stumped. Didn't know what to do. So my husband suggested i try gluten free and wow. within days I felt so much better. not great but better. i went back to my docs and told her what i found and asked her if i should persue more tests for celiac...crohns...anything and she said "nah, dont worry about it. if gluten free works, then stick to it".
So thats what i have done. i knew something still wasn't quite right tho. i was still getting sick a lot, losing weight and just a constant feeling of not being well.
Went back to the doctors during one of my "bad episodes" and she finally caved and sent me to a GI doc.
I must say, this GI doc is amazing! after asking my all kinds of questions and looking through previous tests i have had. He was MAD at my GP for not sending me sooner and disregarding my complaints from the beginning. Being gluten free has help me huge but not 100%.
after speaking with the GI, he knew exactly what my problem was....Crohns! exactly what i had asked the doc about over 2 years prior and she ignored. Now, this is not 100% diagnoses, he wants to do scopes for confirmed diagnosis but he feels i am definitely dealing with crohns.
has anyone else had this. where doctors just ignore your symptoms and you almost feel like they dont want to be bothered with sending you to a specialist. if my GP would have just sent me to the GI two years ago I would have been able to deal and treat it a long time ago.
Posted 4/21/2012 2:35 PM (GMT 0)
Hi, yes i know exactly what your going through!  My Crohn's symptons started right have my first child with random diarrhea and terrible stomach pains but, I put off doing to the dr for years. Then one day, I had an attack that sent me to the hospital, CAT scan found nothing.  Blood work was all over the place as well, liver enzymes were high, so my GP tested my for hepatitis, which made no sense to me because I was not at risk for it.  Tests came back negative, so I still didn't have an answer and the dr gave up.  My next symptom was heartburn and crazy mucus diarrhea which scared me.  Went back to my GP, she thought it sounded like gallbladder, spent tons of money on tests, nothing!  She finally sent me to a GI dr, $300 later, he says you have chronic constipation gave me a cleanout kit sends home and says call me in a month and tell how much better you feel.  Ok, so I don't have a degree in medicine but, i knew he was crazy!  3 years after starting my mission, i finally found a GI dr who listened to me and let me know i wasn't just making this stuff up.  After a colonoscopy he finally diagnosed me with crohns.  Now I feel so much better, not 100% but, at least I can now enjoy a flight without the fear of having use the nasty lavatory on the plane!  The general feeling of being able to leave my house without packing up a box of Imodium is wonderful.  For many years i would load up on these things in fear I would have random diarrhea in an unusual place without having access to a restroom.  Life was AWFUL!   You are not alone in the fight!  Good Luck and stick with what your body is telling you, you are the only one who knows when something isn't right!
Posted 4/21/2012 2:38 PM (GMT 0)
There's good and bad auto mechanics and there's good and bad doctors. Read "never Be Sick Again" by Bernard Francis.
Posted 4/21/2012 2:42 PM (GMT 0)
belle, I believe most people here have similar stories. Crohn's can be really tricky to diagnose and most people still believe that stomach aches start in your head. It's really frustrating. I'm glad you got a good doctor and I hope that you will get through your scope and get on effective meds and start the road to remission very soon.
Posted 4/22/2012 3:41 AM (GMT 0)
Hi,
I was 16 when I started getting sick low grade fevers my stomach felt like there was a burning match and then it would cramp so bad not to mention I couldn't keep anything down lost 50 lbs in no time at all. The doctor at the time told me I had an ulcur he put me on a diet and tagament. I really followed what he told me and it was hard being a kid. But the pain was much worse. Nothing change I was getting sicker and sicker. Mom took me to the doctor and told him I didn't think it was an ulcer. So he told me to look at all his degrees that he was the doctor. I was so sick of not being listened to. I said that's nice keep your degrees and I left. Mom was mad but, I finally found a doctor and was diagnosed with crohn's and there was no doubt about it. I have found you just have to do your homework. On your disease and doctor.
Posted 4/22/2012 4:20 AM (GMT 0)
I soo know the feeling. I think everyone on here has had this feeling at some point in their Crohn's journey. I've been seeing a GI since I was 18 months but when I "finally" got blood in my stools & lost my 85 pounds they were searching really quick like to find out what was wrong.

 Just remember, you aren't crazy!! You know your body more than doctors! :-) It may take a while to find the right med mix but you will eventually. Whether it takes a month or 18 months. You'll get there!

Posted 4/22/2012 4:55 PM (GMT 0)
My first doctor told me I had an infection (though apparently knew I had colitis), put me on some meds for a few weeks, and told me to come back if I ever flared again. So I was on no meds for two years! Then I flared, and have been flaring ever since :P Luckily, I have a great new doctor who puts up with my attitude :)

Edited for a terribly embarrassing spelling error.
Posted 4/23/2012 9:41 AM (GMT 0)
Ah yes and yes and yes. I have had to learn (and the hard way unfortunately) only we can be responsible for our health. If your instincts are telling you one thing and the doctor is doing th opposite or nothing at all to really put your foot down. Your gp is there to for the minor issues anything else ask for a referral.
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