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Crohn's Disease Forum » Support Forum » I am not diagnosed... but I think I have Crohn's. Opinions?


06-06-2017, 10:30 PM   #1
Verity1111
 
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I am not diagnosed... but I think I have Crohn's. Opinions?

Hi! I have had symptoms on and off for at least 5 years. I am only 27 years old. Things really got bad when I was 22, when my middle child was born... I had experienced bleeding with bowel movements (TMI sorry!) and irregularity. After that, I had a weird episode after delivery, a couple months later, where my symptoms were as follows:

Extreme Fatigue
VERY low vitamin D (my level was 7)
a cyst on the back of my head
swollen lymph nodes
as many as 10 canker sores at one time that would last for a couple of weeks
+ the irregularity was still there
muscle aches/pains
dizziness
headaches
nausea
random fevers of 101 or more
low white blood cell count (tested in ER)

Drs at the ER saw me and brushed everything off as me fighting an infection. I was miserable and sent home with no real answers and they said I was too young to have any disease/permanent issues. Over the years I still have extreme issues with constipation. I get swelling on spots of my gums, under my tongue on the gum line especially (sort of like bumps and they are tender), as well as tons of canker sores randomly, allergy symptoms, fevers with the allergic reactions, nausea upon waking especially if woken suddenly, severe constipation.

I had a clear colonoscopy except for a few polyps (benign) and my endoscopy showed I have GERD but nothing else showed up. However, on a trip to the ER recently while ill a Dr curiously saw my small bowel on the left side was inflamed. He assumed it was due to the flu I had, but it hasn't been checked since. He also noted that my appendix looked on the high end of normal in size. I still have issues with my Vitamin D. My highest level I think was in the 20s. I had a level of 12 about a year ago and it only went up because they put me on 50,000 IU per week. Right now I am having a flair up and everything I go through to me points to an immune disorder. I also think I have weak bones because I broke my ankle in three places, dislocated it and injured the tendons just by stepping on it harder than usual (it just gave out) and didn't walk for 5 months last year. Now I have hardware in it. Is it possible I have Crohn's or something similar - even with negative colonoscopy and not much found with an endoscopy? I am desperate for answers and don't know where to go from here.

P.S. My thyroid has been tested also multiple times but it is usually at the low end of what is seen as normal. Also, I recently tried a pill for constipation and after using the bathroom once I then bled a decent amount and barely anything else.
06-06-2017, 10:50 PM   #2
ronroush7
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It is hard to say but it is possible you could have ibd. I hope you get answers soon. Keep us posted. There is a support group on here for those who are undiagnosed.
06-06-2017, 11:03 PM   #3
Verity1111
 
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It is hard to say but it is possible you could have ibd. I hope you get answers soon. Keep us posted.
Thank you! I'm not certain of which it is honestly. I am just connecting my low vitamin D and canker sores because I hear they are common Crohn's symptoms. Not sure if they are also associated with IBS. I will need to research more.
06-06-2017, 11:12 PM   #4
ronroush7
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You are right. Canker sores are common with Crohn's disease.

06-06-2017, 11:14 PM   #5
Verity1111
 
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You are right. Canker sores are common with Crohn's disease.
Thank you for at least confirming that. I get so many it's ridiculous. I get them not just on my cheeks, but in my throat and on my tongue as well as my gums - both the hard and soft palate. :/
06-09-2017, 05:17 PM   #6
ronroush7
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I hope you feel better soon.
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