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Could i have crohns ? Please help

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Crohn's Disease
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Posted 1/12/2011 4:57 PM (GMT 0)
I have been really not well for years. I have all these symptoms that listed separately, do not produce any positive results in tests.
None of my doctors are willing or smart enough to really pursue going beyond regular 5 minute diagnosis.. I'm really upset that i cant get anywhere. How do people get diagnosed for Crohns?

My symptoms are

Extreme pain in my stomach, actually lower than my stomach.. But my entire abdomen is painful
I wake up at night with stomach and intestinal pain
Pain in my eyes, sensitivity to light.. i seem to want to wear sun glasses all day and night.
Fever and general bad feeling
Reaction to milk products
Fatigue
Lack of sleep

I have tried to get my primary care physician to do something proactive about checking this. They ordered stool tests, blood tests.. but nothing positive. I am reading that Crohns can happen and still tests are negative.

No on has considered ctscan, MRI, xray, Endoscopy. I have had bleeding and a colonoscopy but was told I had Diverticulitus.

I think there's more to the story. I just cant get any doctors to do anything beyond regular treatments.
How do you get diagnosed and tested?

I'm really tired of feeling sick...

Dave
Posted 1/12/2011 5:11 PM (GMT 0)
blood tests, I had obstruction, so er surgery, evan then they said I had typhoid fever. it took another 3 weeks for my 2 dr to say I had ilitis, crohns was not evan crohns back then, finally after 3 months they said crohns, but there was no med's back then, so I only took pain med's. pred had no effect on my disease, it way to far gone, after 4 months I had total obstruction, and they removed all disease, 8ft of terminal ilieum and cecum valve. now on permanent dis. ssdi


sounds like early cd to me
Posted 1/12/2011 5:19 PM (GMT 0)
Frustrating isn't it!

In son's case blood tests were the initial indicator for his GP to refer to a specialist(took GP too long to order the tests imho)

Following which a colonoscopy and biopsies and a barium follow through x-ray(although I think this was more to check for strictures/blockages) Diagnosis was from colonoscopy/biopsies.

Hope you get some answers soon

Posted 1/12/2011 5:24 PM (GMT 0)
it can take a really long time to get a diagnosis. In my case I presented with rectal bleeding and diarrhea, and it still took a year from that first appt to get me a sigmoidscope and a proctitis diagnosis - then another 2 years until I got a full colonoscopy and a Crohn's diagnosis. During all this time I had diarrhea and bleeding and mucous.

You might want to keep a food diary, and check out the "Bristol index" for stool - include that info in your diary to see if you can tease out any patterns. Rectal bleeding is always worth a call to the DR, but if it only happens sporadically they're probably going to think it's an internal fissure or hemorrhoid.

In the mean time you might feel better if you trialed some elimination diets. Take out lactose. Take out all dairy. Take away gluten. See how you feel.
Posted 1/12/2011 7:36 PM (GMT 0)
A bad case of diverticulitis will make you feel horrible and give you a fever!!!!
Did they ever treat your diverticulitis with antibiotics? They should have. It should have worked too. If it didn't, they need to figure out why. I my case, I had colitis on top of having diverticulum.
Sounds like you had a colonoscopy, so at least they did that. You need to get back to a GI. If you keep having spells of diverticulitis, they often suggest surgery to take out the disease part of the colon. They finally did that for me. I am not saying that is what you need but you at least need to get back with a good GI to find out why your stomach still hurts. A fever is often a sign of an infection, so get to your doctor soon,ok? Good luck to you.

p.s sounds like you might be lactose intolerant as well. A lot of people are, including me.
Posted 1/12/2011 8:01 PM (GMT 0)
You have gotten some good advice on things to try. I agree with the above posters that you need to keep looking for answers because you know your body and if something isn't right, then it isn't right. Doctors don't always want to do the hard work of looking for the answers and we need to push. Blood tests would be the first step. I would also like to know if they took biopsies during your colonoscopy, if not then a repeat might be in order. Or a pillcam test.

But on top of all that, have you seen an eye doctor? That is what is concerning to me. There are a lot of eye issues associated with Crohn's and you need to see an actual doctor, not the other kind. Sorry I always forget which is which. When you see them, explain what you are worried about and why so they can really examine you.

I self diagnosed at 13. My mother had CD and I went to her doctor. But even with all that I was treated like a crazy kid and went undiagnosed for the next 10 years. So it really can take a while, you just need to be persistent.
Posted 1/15/2011 4:29 PM (GMT 0)
Yes, I agree, you need to see an eye doctor right away! I had pain and light sensitivity, and the eye doctor said I had active iritis and immediately put me on steroid eye drops and other numbing and dilating drops and told me to call the GI immediately, that this was just the tip of the iceberg.. You can do permanent damage to your eyes if that's what it is and it is left untreated. At the time my GI doctor just said; oh yes, I agree with his treatment plan. Then 2 weeks later I ended up in the hospital for a week because the Crohn's flared up so badly.
Posted 1/15/2011 4:35 PM (GMT 0)
Just curious have you had your thyroid checked? I had similar symptoms to what you described and I was hyperthyroid. The sun irritating your eyes really reasonated with me, as well as the fatigue/insomnia symptoms. It made me feel like I had a really bad case of the flu.

Also, I have a niece who has diverticulitis and I swear sometimes the symptoms are very similar to Crohns. I think maybe asking for more testing would be wise. I think the test many with Crohns have had success with is the Pill cam. You swallow a pill camera and it takes pics all the way thru your digestive tract. It shows Crohns where scopes can't reach in the small bowel. Good luck and keep us posted. Hugs!
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