Crohn's Disease Forum » Your Story » Just wanting to feel better..

06-26-2011, 02:14 PM   #1
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Join Date: Jun 2011
Just wanting to feel better..

I am almost 18yrs old and currently undiagnosed.
First off I will start off with my main symptoms:Abdominal pain, Nausea, Blood/mucus in stool, constipation, Unintentional weight loss(50lbs), Reduced appetite, Unexplained fever, Fatigue/Weakness, Joint/muscle pain, Hair loss,
Chills, and Bruising Easily
ok on to my story:
My whole life I have had health/GI problems. I was born with chronic GERD. When I was 10 I had a Nissan Fundoplycation, a vagotomy, and a Pyloroplasty. Then wen I was 14 I was very sick for about a year and finally had my gallbladder removed due to them finding gallstones. That being said, for the past almost 4 years I have been doing fairly well except for me catching just about every virus I am exposed to, but that's pretty normal for me since it has been happening for many many years.
However, at the end of January, I got the worst case of the GI flu I have EVER had. Due to the Nissan, I am unable to actually throw up, so I went through 2 weeks of being extremely sick and finally my parents decided that it was time to take me to the ER. I was admitted for 6 days and then sent home with an IV. While there, they did an endoscopy where they found gastritis and then gave me meds for that. Being home I never got better and the constant nausea and abdominal pain were not showing any signs of lessening anytime soon. My GI kept thinking that she must be missing something so she decided to do another endoscopy and a colonoscopy. While visibly my GI did not see anything, the biopsies she took showed chronic inflammation throughout my GI tract and ileitis and colitis that resembled Crohn's. After those results she put me on steroids for a month but she still wasn't sure if it was Crohn's so she decided to do a blood test, which came back "normal", so she completely ruled out the diagnosis of Crohn's and has since stopped looking for an answer. I was also put in the hospital at the beginning of May and was kept for 3 weeks where I had a feeding tube, which is thankfully out now! While there they found that my white blood cell count was elevated, and that my vitamin D levels were low, and from what I have found, those can both be symptomatic of Crohn's. I have done SO much research and from what I have found and seen, I really feel like Crohn's is something that should be MAJORLY looked at. I'm not trying to diagnose myself, it's just that I have pretty much all of the symptoms, the biopsy results to prove it, and some blood work to prove it...I definitely need a second opinion, and I we have called Mayo in MN and I will hopefully be going there with in the next couple months. I just REALLY need to have this figured out because I'm at a loss right now locally with a doctor who seems to now suddenly be unwilling to help me because she has come up with the opinion that this is all just in my head, which I really don't get since there is obvious proof that SOMETHING is wrong. I just seem to be getting worse and I already missed half of my junior year because of it, I really just want an answer so I can try and at least feel a little better.
(sorry for the length of this, I think it was partly a rant too )
Thanks for listening!

Last edited by bdpal575; 06-26-2011 at 02:55 PM.
06-26-2011, 02:24 PM   #2
New Member
Join Date: Jun 2011
Hi, blood tests arent all that conclusive. If it was a genetic test that would prob show it. Although it sounds alot like CD from what your describing if the inflamtion is mainly in your colon you may be more likely to have Ulcerative Colitis. However both of these are hard to Dx, be sure to ask as many doctors as you can, and describe your symtoms in detail.

Hope you get better

P.S. Remember doctors like to feel smart, don't say Crohn's or UC, they like to do that lol. (Even tho I think your on the $)
06-27-2011, 08:28 PM   #3
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Join Date: Jan 2011
Location: Pennsylvania

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Hi bdpal and welcome! I can't believe your GI wrote off Crohn's based on negative blood tests. Many of us have negative blood tests, such as myself. Some of us even have negative biopsy results, again, such as myself. Unfortunately, Crohn's is difficult to diagnose and it isn't very cut and dry.

I HIGHLY recommend you get a second opinion. All of your symptoms (especially blood and mucus), issues with your gall bladder, and Chronic inflammation in your GI tract all add up to IBD. Don't give up and keep fighting for answers. You need to get to the bottom of this so you can start treatment and begin to feel better!

Diagnosed with Crohn's Disease - July 2010
Diagnosis of Crohn's Disease Retracted - October 2011

I am still sick and so confused...

Crohn's Disease Forum » Your Story » Just wanting to feel better..
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