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So Confused...

A

abbyjo98

Hi everyone,

I've fished through some of the other posts to see if I could find any related to my current situation and I was unable to find anything, so I'm wondering... can anybody offer any advice?

I was diagnosed with Crohn's in 2008 via colonoscopy. My gastroenterologist also did a Prometheus blood test that showed patterns consistent with Crohn's. Since then, I've had two children and not taken any medicine in about 3 years. (I quit taking it when I became pregnant with baby #1.)

In the last two months, I've found out the following:
-- osteoporosis - I have had very rapid loss in bone density over the last 2 years (I'm only 32 years old.)
-- corneal infiltrates and eye inflammation treated with steroid drops
-- abdominal ultrasound and CT scan results were normal
-- all blood work normal
-- colonoscopy showed ulcers at the ileum
-- x-ray showed degeneration of hips and confirmed spondyloarthropathy
-- random genital ulcer that has come and gone in the same place (sorry, tmi)


I have no abdominal pain, no family history of IBD, occasional bouts of diarrhea - but who doesn't...

So basically, my outward symptoms are lower back pain and knee pain and occasional redness and pain in my eyes. Inwardly, I have ulcers at the ileum part of my small intestine and osteoporosis. I have seen my OB/GYN, gastroenterologist, ophthamologist, and rheumatologist. Maybe I'm just in denial, but reading all these terrible stories about people with Crohn's, I'm not convinced this is what I have. I feel no different on medication or off of medication. This cycle of appointments was brought on by my bone density scan results indicating osteoporosis.

I'm wondering if anybody out there has had the same type of issues and found it to be a different autoimmune disease. I realize I'm on a Crohn's forum for those who have Crohn's, but I'm just so confused and looking for any kind of support or advice out there.

Sorry for the long post!!

Oh! I've been prescribed Pentasa 1000mg 2x/day and Entocort 3pills 1x/day.
 
Last edited:
kiny

kiny

Well-known member
abbyjo98 said:
I was diagnosed with Crohn's in 2008 via colonoscopy.
Click to expand...
Did that involve a biopsy?

A colonoscopy doesn't say a whole lot, ulcers related to other disease can look similar afaik. That's why they do a biopsy too the first time usually, to make sure it's CD and not intestinal TB or something else.

I actually didn't get a biopsy during my first colonoscopy, then I went a university clinic and there they were pretty mad my previous doctor simply did a colonoscopy without biopsy and decided I had crohn. The only sure way to know is with biopsy (and even then, there have been cases where CD was mistaken for intestinal TB). The granuloma reaction from the biopsy tells a lot about what disease it is, and it rules out other diseases that have a different looking granuloma reaction.

About the IBD running in the family, not everyone who has IBD has an inner family member who has it, I think actually the majority of IBD cases do not have a family member with IBD, so that's really not something you can rely on.

Being on and off medication without any change when you take pentasa isn't really abnormal, pentasa is a really a drug with very little effect, some studies have wondered if pentasa does anything at all. Some studies were even critiqued because they compared against pentasa, because it's easy to show your drug works better than pentasa if pentasa never did anything in the first place. Whatever pentasa does, it has very little effect on the disease and is used for people who are basically in remission.

There is no sure way to know what you have basing things of that, the only sure way is biopsy.
 
David

David

Co-Founder
Location
Naples, Florida
Hi there and welcome to the community!

I can understand your confusion and no doubt are frustrated. I'm sorry you're having to go through all of this :(

Everything you describe can be an extraintestinal manifestation of Crohn's Disease. It's almost definitely Crohn's if the colonoscopy biopsy was positive and the Prometheus test came back positive. Sure, there are diseases such as Behçet's Disease that would fit your symptoms, but both of the tests I mentioned coming back positive are pretty telling.

With your symptoms and disease location, I would suggest requesting having your vitamin B12, vitamin D, folate, and magnesium levels tested. People with Crohn's are commonly deficient in them and can lead to a lot of what you describe.

All my best to you!
 
723crossroads

723crossroads

Location
USA
abbyjo98 said:
Hi everyone,

I've fished through some of the other posts to see if I could find any related to my current situation and I was unable to find anything, so I'm wondering... can anybody offer any advice?

I was diagnosed with Crohn's in 2008 via colonoscopy. My gastroenterologist also did a Prometheus blood test that showed patterns consistent with Crohn's. Since then, I've had two children and not taken any medicine in about 3 years. (I quit taking it when I became pregnant with baby #1.)

In the last two months, I've found out the following:
-- osteoporosis - I have had very rapid loss in bone density over the last 2 years (I'm only 32 years old.)
-- corneal infiltrates and eye inflammation treated with steroid drops
-- abdominal ultrasound and CT scan results were normal
-- all blood work normal
-- colonoscopy showed ulcers at the ileum
-- x-ray showed degeneration of hips and confirmed spondyloarthropathy
-- random genital ulcer that has come and gone in the same place (sorry, tmi)


I have no abdominal pain, no family history of IBD, occasional bouts of diarrhea - but who doesn't...

So basically, my outward symptoms are lower back pain and knee pain and occasional redness and pain in my eyes. Inwardly, I have ulcers at the ileum part of my small intestine and osteoporosis. I have seen my OB/GYN, gastroenterologist, ophthamologist, and rheumatologist. Maybe I'm just in denial, but reading all these terrible stories about people with Crohn's, I'm not convinced this is what I have. I feel no different on medication or off of medication. This cycle of appointments was brought on by my bone density scan results indicating osteoporosis.

I'm wondering if anybody out there has had the same type of issues and found it to be a different autoimmune disease. I realize I'm on a Crohn's forum for those who have Crohn's, but I'm just so confused and looking for any kind of support or advice out there.

Sorry for the long post!!

Oh! I've been prescribed Pentasa 1000mg 2x/day and Entocort 3pills 1x/day.
Click to expand...
Hi, I am new to the forum and I have had similar symptoms as you. The pains I get are off and on and diarrhea is under control from cholestyramine they put me on. But i have the eye pain and the osteoporosis could be something totally unrelated. But, if you had ulcers, you have crohns. You mabe one of the lucky ones who just don't get alot of symptoms. Entocort worked great for me. But they made me go off of it so I don't become immune to it. You can have other immune diseases with crohn's. I have fibromyalgia and myosis of muscles, also arthritis which is an immune disease. I have eye pain, runny nose and cough I never used to have. Also people do get genital ulcers from it too. I have mouth ulcers right now. Keep taking your meds and don't worry about the symptoms. EVERYONE is totally different in how it affects them. I would see an orthopedic for the osteoporosis though and start taking Citrical with vit D3 everyday. God bless and hope I helped. Teresa
 
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