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Need help

I have not been diagnosed with anything but have had gastro problems for 9 months now. I am 29 years old and before this I was always very healthy.

I'm trying to find out if anyone had similar experiences to me. I have had many tests that show nothing, yet I struggle with my health.

It started with bloody stool followed by horrific stomach pain that put me in the ER. They ran a standard blood test that was normal and told me to see a gastro.
Gastro did endoscopy and colonoscopy, normal results and told me I was fine. Flew to gastro at mayo clinic for second opinion, they told me it sounded like chronic fatigue or depression before running a single test. He finally did a CT of stomach that was normal. Went to holistic doctor, did a food allergy test that was normal. Still no answers and all blood work and tests are normal.

I found that my symptoms are triggered by food. Throughout these months I have had bad constipation and severe fatigue. When I eat the wrong foods the constipation, fatigue, and irritability increases. I go through spells where I do ok eating these foods and then I have times were my body can't tolerate it.

I found that dairy, beans, salad, sugars, fruits, vegetables set this off. Basically anything that isn't easily digestible causes me problems. During the worst of this I can barely eat at all and feel completely exhausted with no appetite and eating usually gives me stomach pains. My stools during this time are loose and I can see undigested food come out such as beans, salad, and fruit and vegetable peels. I tend to have mucus as well, which I never had before all this started.

This is slowly ruining my life, trying to do a physical job while always fatigued is very tough. I get home and don't have anything left in me, I just want to lay around. I used to always be very active and went to the gym 6 days a week. That is no longer possible. I tried to date for a couple months and I didn't have the energy to maintain a relationship with an active person.

Is there anyone out there with crohns that was not able to be diagnosed by standard tests?
 
Is there anyone out there with crohns that was not able to be diagnosed by standard tests?
Look around the forums, quite a few actually. Your primary is who coordinates all your care, you need to keep making him/her aware of what you are going through. Your primary is your best advocate through all of this, its taken some literally years to get diagnosed. There are also a lot that have been right off the bat, its weird.
 

valleysangel92

Moderator
Staff member
Hello there and welcome to the forum!

I'm sorry to hear you are having so much trouble. I wish I could say your story is an uncommon one but unfortunately there are quite a high number of people who have trouble getting a diagnosis.

I see that so far you have had scopes and a CT scan, what about an MRI? I ask because even with upper and lower scopes there is a section of the small bowel which can't be seen. Although CT scans can pick up inflammation, they aren't as good for looking at organs and soft tissue as MRI scans are. I'd also enquire about getting something called a fecal calprotecin test done, which looks for inflammation in the bowel using stool (poop) samples. Its a very sensitive test and can show inflammation that imaging scans don't pick up. I recently had a clear MRI but a fecal cal showed inflammation, a few weeks later the inflammation markers in my blood started to reflect the inflammation too and my GI decided to go with those and just take the clear MRI as a sign we'd caught it early. If any of these tests show inflammation then it might open up the possibility of something called a capsule endoscopy. A capsule endoscopy is a procedure where you swallow a small camera in the shape of a pill, which has its own light source and can take multiple images of the digestive tract as it passes through. The advantage of this is that it can take images of the small bowel which cannot be reached with standard scopes.

We have an undiagnosed sub-forum which is full of advice and support for people in your situation, have a look through the threads and see if there is anything that's of use to you and feel free to make your own thread with more specific questions if you like.

I really understand your frustration, my symptoms started at 15 but I wasn't diagnosed until a couple of weeks before my 20th birthday, I had a series of normal or inconclusive tests followed by a couple of years of 'you'll grow out of it' or ' you just have to get used to it' or 'its functional, there's nothing we can do, take these pills and go' . Keep pushing your doctors to look further, you know your own body and you alone know when something isn't right. If your current doctor isn't willing to help you out then seek a second opinion.

I hope this helps a little , please feel free to come back and ask us any questions you have, we can't promise to always have the answer but at the very least we can support you and share our own experiences. Please keep us updated with how you are doing.
 

David

Co-Founder
Location
Naples, Florida
Greetings and welcome to the community. I'm so sorry to hear about what you're experiencing. It sounds horrific :(

I agree with ValleysAngel. Have you had a fecal calprotectin test yet?

All my best to you.
 
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