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Crohn's Disease
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Posted 4/21/2011 1:53 PM (GMT 0)
I am new to this site and am hoping I may have found some answers. I am 31 years old with 2 children. I have always had stomach issues. My mother told me I got the family stomach. But after my son was born almost 7 years ago I got very ill. I was very underweight. Had constant diarrhea with intense abdominal pain. Bouts of nausea and days without eating. I finally went to a dr. He did an endoscopy and colonoscopy. Directly after he mentioned Crohns and Colitis, but ultimately diagnosed me as a celiac. I went on a gluten free diet and immediately found relief. But only for a short period of time. Then it all started up again. Bleeding, diarrhea, pain, gas, bloating. I have taken everything out of my diet and still in so much pain. I went to another dr....as my last one said that it is in my head and prescribed anti depressants. He did new tests. Stool study, blood work and more colonoscopy. My celiac is undetectable, but there were a bunch of other abnormalities. Lots of inflammation, bleeding under the visceral(?) layer, inflamed ileum, a fatty tumor, and a few other things I can't remember. He initially mentioned that I was missing my villi and that he thought I had Crohns. He was worried about the bloody looking freckles and the inflammation especially on my ileum. But on my visit.....he said everything was great! NOTHING is wrong with me. He even told me to go off my gluten free diet. Then again prescribed me anti depressants. I insisted that I was NOT depressed and didn't want the meds, I wanted someone to figure out what is wrong with me. I am so frustrated.....I don't know what to do next? They say it's in my head....but I don't understand how my head could create all of this. Please help me

Rachel
Undiagnosed
Posted 4/21/2011 3:12 PM (GMT 0)
Hi Rachel,

And welcome to Healingwell! Sorry for the run around you are getting, sad to say its not that uncommon. Was your doctor a GI or just a family doc? You should get a copy of all your tests and take them to another doctor for another opinion. You might have to have another colonoscopy but you need to find out whats wrong. Did they do biopsies with your colonoscopy? That would show if you have Crohns. I am so sorry for all your suffering, and I sure hope you can find out whats going on. Another test I would request is the pillcam. Many have had this test help them get a diagnosis when the other tests were inconclusive. Hugs!
Posted 4/21/2011 9:33 PM (GMT 0)
I am so sorry that you are not feeling well!.  I agree with everything that Nanners has suggested.  I would get another opinion from a GI doctor.  I want to encourage you to keep at it until you feel like you are being listened to. 

Before I was finally diagnosed I had gone to three different doctors.  They all thought that I was anorexic and just had a nervous stomach.  I can't even tell you how many antacids they had me try.  One doctor even thought that I was lying to him about being pregnant.   He was sure that my side pain was an ectopic pregnancy.  After I finally told him that unless Jesus was coming back again through me NO I am not pregant.  He then dropped it:)

Don't give up!  I am sorry that you have to fight so hard for this.

Posted 4/21/2011 9:41 PM (GMT 0)
mommaof3 - I had someone go down the ectopic pregnancy route with me, too!

Rachel - you will find much information here -- a very knowledgeable and supportive group. But, I also agree that you should try another GI - someone who listens to you. Many of us have also had a long journey to get the right answers...I hope you find yours.
Posted 4/21/2011 9:54 PM (GMT 0)
I did not go to a GI this time....I went to an internal medicine dr with a GI specialty. I thought I had found gold with him. Until he insisted that I take the anti depressants....claiming they would clear up my bowel issues. Does anyone know of a good GI dr in the Phoenix area?
Posted 4/25/2011 10:46 PM (GMT 0)
Wow, I thought this line of thinking was long gone! I too was told ridiculous stuff when my mom started taking me to a GI doc. He told me to stop eating Big Macs and I would be fine. I have never even tried a Big Mac, nor did I eat junk food. I was 17 years old so I guess he figured I ate a lot of fast food. It took years of tests and doctors before I finally got a diagnosis of Crohn's. The first med they put me on was amitriptyline. Thirty three years later, and I still take it. I was told that due to the never ending pain that accompanies this disease, that we don't get proper sleep. Amitriptyline is an antidepressant that is often used as a sleeping aid, and is usually not prescribed in a therapeutic dose. Nanners is right, they should have done biopsies to diagnose Crohn's. I've had a bunch of weird suggestions and accusations over the years. I've found that you must be your own advocate because doctors aren't the be all and end all. Do your own research, participate in forums like this, and you will be better prepared when you need to talk to your doctors. I'm really sorry you are going through this!
Posted 4/30/2011 3:54 AM (GMT 0)
Hi! I was misdiagnosed with Celiac disease for two years. I went to a military GI doctor and he diagnosed me with Crohns right away. This was in August last year. I started taking 6-MP and had a major flare up three weeks ago and have been on Prednisone which is horrible. Its so frustrating trying to get this undercontrol. I hope you get it all figured out. I really like this site. I just found it :) Good luck too you!
Posted 4/30/2011 3:55 PM (GMT 0)
Welcome ouchiebelly!
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