Is this Crohn's? Please Help!

[undiagnosed]

Hello, I'm new to the forum and desperate for an answer. I have been sick for a few years now and I been partially diagnosed...the doctor's THINK it's SOD.

I am on no medications and am currently trying to figure out what the hell I'm gonna do. My docs have no clue what's going on. My GI thinks I might have Sphincter of Oddi Dysfuntion (attacks even post gall bladder removal)...which is not autoimmune...but it is extremely debilitating... Autoimmune runs bad in my family...SOD does sound like a likely culprit.

Nerve pain that is similar to sciatic pain. Come and goes.

Mild numbness in hands and feet for 10 years. Intermittent and varying in degree.

Mild arthritis symptoms in hands and wrists for 10 years. Intermittent and varying in degree.

Abdominal attacks that last from 2-8 hours. Attacks even post cholestectomy.

Chronic upper right quadrant tenderness. Felt every day/every minute. Degree of pain changes throughout day and is much worse with stress.

Started 3 weeks prior to cholestectomy.

Heartburn.

Debilitating nausea. Worse with menstruation and stress.

Intermittent sever diarrhea. Worse around menstruation and stress.

No appetite

Significant weight loss

Hair loss

Hot flashes

Migraines centered behind right eye.

Light sensitivity

Bumpy rash on elbows that lasted 2 weeks.

Urine often is very cloudy with stuff in it.

Organ in right upper quadrant seems to be swollen on and off. The cloudiness of urine increases when the organ is more swollen. Also, after I eat my stomach sticks out and my belly is swollen around my belly button but mostly on the left side.

3 mm Calculli on right kidney.

Dizziness while on computers, and in large crowds. Intermittent and varying in degree.

When the dizziness occurs, patient feels disoriented.

Bladder infection-like symptoms with no infection/nothing grew out in culture.

Moving burning skin with NO visible irritation. 80% of burning sensation is on right side. Gone within 2 weeks. Excruciatingly painful.

Chronic Fatique

Sorry for the long post.....look familiar to anyone?
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If anyone has any information, please write me! I am trying to decide if I need to go to University of Indiana, or stay here in Kansas City and ask for a colonoscopy. I've had every other GI test....no biopsy for Crohn's but a Small Bowel Followup that came up negative. I have had some blood in my stool in the past, but not within the 5 months.

 

[Jeff D.]

Welcome to the forum. Crohn's is hard to diagnose because everyone's different I'm sorry you are suffering so much though. Have you gone for a second opinion. Also, there are two bloodtests, can't remember for the life of me right now but hopefully someone will come in and let you know, that will say for sure if you have Crohn's.

Best of luck my friend I hope you get diagnosed soon

 

[drew_wymore]

There is the Prometheus Panel, I don't know if that encompasses both markers or just one of them though.

 

[Guest]

hiya & welcome to the forum.

my heart goes out to you - having all those symptoms is bad enough, but not knowing what they are, nor what to take to help things is even worse!

some of them could point to Crohns, yes.. but then there are other conditions which can bring these symptoms too. of course it's always possible you have Crohns, and even have more than one condition going on...

something rang a bell with me whilst reading your post - the burning skin.. have you ever been for allergy testing, or are you an allergic kind of person? the reason i ask is, i've become increasingly allergic to meds over the years, and one very severe reaction to a medication had me crying out with pain and burning all over my back - it actually felt on fire.

regarding familiar symptoms - yes fatigue is common with Crohns, as are the abdo issues you mention, also there does seem to be an established link between hormonal activity & worsening of Crohns (there's a thread here somewhere on this). numbness has been noted in Crohns too - usually in my case due to my B12 levels being down, or dehydration.

my advice is to push in whatever direction you need, for further investigation - speculation isn't good enough. maybe a colonoscopy would be helpful, and like Jeff & Drew have said, blood tests too.

good luck - and please keep us posted how you're getting on.

 

[undiagnosed]

Thanks for the info. I will definitely ask about the bloodwork panels.

Few questions for everyone:
Do you have sour stomach and what I call sour intestines?
How long does a flare last for most of you?
Prilosec or any other magnesium based ant-acid rips my stomach/intestines apart...anyone else?

Thanks for your comments people! Dingbat, I was not on any medication during the burning skin phase and my GP wants me to be on no meds until this whole thing is solved. But I've been on no meds for months now and it's wearing me down! I'm so tired! I will look back in my food/med journal and see how the burning skin relates to the last meds I took...thanks for the advice....

Darn, I was doing really good for the last 2 weeks...missed my period, go figure. Now I'm getting sick again and the diarreaha is back and the pain in my lower guts...