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Crohn's Disease Forum » Your Story » Is it Crohn's disease or is it not?


08-26-2016, 12:40 PM   #1
Adsmalley612
 
Join Date: Aug 2016
Is it Crohn's disease or is it not?

Hi,
My name is Adri. I am 28 years old. I am writing to see if there are any other people in this country that are having a tremendous time getting a diagnosis.
For as long as I can remember I have had tummy troubles from always running to the bathroom, cramps, nausea, constipation and bloating. This has been going on for at least 18 years of my life. I remember my mom always joking about me knowing where every bathroom was in every store because I was always going to them. Due to these problems and pain over the years I had my gallbladder removed at age 20. This may have been a premature eviction of an innocent organ at the time. Who knows? So originally through my life I got a diagnosis of IBS (irritable bowel syndrome). OK. Well I ran with that for 10 years. Yes 10!!!. I have had 2 colonoscopies and 4 EGDs in the last 10 years. I am only 28. I will be having yet another EGD and flex sigmoid study in a few weeks. (I will get to that later).
I was going OK for years. Not any better not any worse. Then BAM.... May 2016 hit my like a Mack truck. Intense cramps, diarrhea, nausea, soreness, bloating. Now when I say pain I mean, on the floor fetal position and feeling like little trolls are jack-hammering concrete in my bowels. Yes. It sucked. This lasted 24 hours. I did not sleep. For 6 days after that i had no appetite, and my belly was sore to the touch. I was exhausted and just felt beat up, jack-hammers . I have a friend who is a NP (nurse practitioner) for a GI doctor. I texted her my symptoms and mentioned a bloody stool 3 days after the episode. She scheduled me for a colonoscopy and EGD at this time. DUM DUM DUM. Weeks later I get the results that I have inflammation in my sigmoid colon, stomach, and duodenum. It wasnt new inflammation but pseudopolyps from chronic inflammation. HUM? Well this means IBD (Inflammatory Bowel disease) doesn't it?
To make a very long story shorter. I had Prometheus testing. It said Crohns. None of my blood levels like CRP or HGB were altered, and my symptoms are inconsistent. Ok? So off to a new doctor I go because the one in my small town can not get to the bottom of this problem.
Now I see a specialist he is running tons and tons of tests including: hydrogen breath testing (not fun), ARM testing, TSN testing, EGD and Flex sigmoid, and a capsule endo. not to mention tons of blood work and stool samples.
What do I do now? I am not miserable I feel pretty good 1/2 of the time, but I definately function and I am eating just fine unless im in pain. No weight loss here. .
Any advice? Any similar stories?
08-26-2016, 01:20 PM   #2
ronroush7
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There is an undiagnosed club support group in the forum.
08-26-2016, 01:26 PM   #3
ronroush7
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It sounds like IBD. Hope this new doctor has answers.
08-26-2016, 02:38 PM   #4
eleanor_rigby
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It sounds like Crohn's Disease... The intense cramping pain and foetal position situation sounds like your small bowel could be narrowed from inflammation so it is having a difficult time getting food through. A capsule endo should reveal more there. It sounds like they are being very thorough in their testing in order to get to the bottom of your problems and come up with a unifying diagnosis. It looks like they suspect IBD but are also looking to rule out other diseases at the same time as well before giving you a firm diagnosis. It may be useful to have imaging tests (CT scan/MRI scan) as well. Blood tests can be inconsistent and if you have inflammation high up like your duodenum then stool samples may not necessarily show abnormal results either. Certainly camera tests (colonoscopy and endoscopy) like you have had are the gold standard.
__________________


History:
2nd Generation affected

Symptoms since 08/2006 (age 17)

Emergency open bowel resection after perforation in 12/2011 (age 22) (wrongly diagnosed as burst appendix ). Three years remission following this unmonitored

Diagnosis:
Perforating small bowel Crohn's Disease 01/2016 (terminal ileum, duodenum)
Coeliac disease (age 26)

Meds:
50mg azathioprine (down from 75mg after my WBC dropped)
Gluten-free diet
08-27-2016, 06:13 AM   #5
Adsmalley612
 
Join Date: Aug 2016
It sounds like Crohn's Disease... The intense cramping pain and foetal position situation sounds like your small bowel could be narrowed from inflammation so it is having a difficult time getting food through. A capsule endo should reveal more there. It sounds like they are being very thorough in their testing in order to get to the bottom of your problems and come up with a unifying diagnosis. It looks like they suspect IBD but are also looking to rule out other diseases at the same time as well before giving you a firm diagnosis. It may be useful to have imaging tests (CT scan/MRI scan) as well. Blood tests can be inconsistent and if you have inflammation high up like your duodenum then stool samples may not necessarily show abnormal results either. Certainly camera tests (colonoscopy and endoscopy) like you have had are the gold standard.


Thank you.
08-27-2016, 09:44 AM   #6
cbylow
 
Join Date: Aug 2016
I'm sorry to hear about your bouts of pain and suffering. I understand the
frustration of dealing with the system and not getting the whole picture and
answers. A definite diagnosis can be difficult at times to achieve because
there can be many similarities. Keep in mind that these aren't really different
diseases, but rather different classifications of symptoms with the same cause.
We are reacting to the chemicals in our food. We are all different and we may all react in different ways, with different symptoms. I believe that any person
would have one of these diagnoses if they were to consume enough of these
chemicals. Some people, like the ones on this forum, are a lot more
sensitive to these chemicals than others. I believe that avoiding these
chemicals is our best bet to prevent flares and further progression of the
disease. We've seen amazing results so far with our family.
I wish you all the best.
08-27-2016, 10:01 AM   #7
ronroush7
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Man has messed food .
08-27-2016, 10:04 AM   #8
ronroush7
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Man has messed up food.
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