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Undiagnosed Crohn's

Hello everyone!

I'm very new to this blog and to Crohn's disease in general. I'm 22 years old, and I'm an actress/singer living in LA. When my docs started suspecting that I have Crohn's, I started researching a lot and I'm very glad I found this blog. It's great to know that you're not alone there!

I got my first symptoms 1,5 years ago, when I got sick and thought I had food poisoning but wouldn't get better. I didn't have great insurance at that point, so I had to fly back to Ukraine (where I'm originally from), and the docs there diagnosed me with a roundworm parasite, that they treated and I got a little better. But then a few months later, I felt sick again, so I went to an infectious disease doc, and they diagnosed me with a tapeworm, which they treated 4 times, but I still wouldn't get better, when all my tests were fine. So the docs decided to do a colonoscopy, and they saw that my ileum was inflamed and had ulcers, so they suspected that I have Crohn's. Unfortunately, at the same time I was diagnosed with a carcinoid tumor so the docs were more worried about that, and left my ileitis undiagnosed and untreated. They removed the tumor, and now I'm cancer free, but I still feel sick all the time. I was hospitalized for two weeks cause of having severe lower right abdominal pain, thinking it was appendicitis. But the docs ruled that out, and finally started treating me for Crohn's with Entocort. So I've been taking it only for a few days, but I was wondering how fast should it really kick in if it's really Crohn's. At the moment I'm experiencing a lot of Crohn's like symptoms, but also some of my symptoms are unordinary for Crohn's. I have this weird itching all over my body with muscle/joint pain and discomfort, as well as eye dryness/itchiness and rectum pain/itchiness. And I'm trying to figure out if it could be all connected to Crohn's, or it's something else.

Sorry for making this so long, but I just wanted to share this story with you guys, and see what you think.

Thanks a lot,
Katrina :)
 
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Gianni

Moderator
Hi Katrina

Sorry you are having a tough time. How quickly the entocort kicks in is completely up to the degree of the disease progression. It sounds like your crohn's went untreated for quite awhile so I would try and give it more time on the Entocort before throwing in the towel with that med.

As for the strange symtoms, I would bet entocort is the reason for most of these "unordinary" symptoms so make sure you bring this up with your doctor and he or she will likely put you on a different steroid or medication entirely.

Crohn's can actually cause eye issues in a small percentage of patients so I would seek out a referral to an ophthalmologist to make certain that that isn't the case although with no pain accompanying the eye symptoms, i doubt that's the case.

For now stick with the entocort (or other steroid the doctor may prescribe you) and possibly some lower line drugs like Pentasa, while maintaining a consistently safe diet and see where you are in a few weeks. If you aren't improving then exploring other treatments like biologics or extreme diet changes would be your best bet.

Also, I live in LA too :) !

All the best, Gianni
 
Welcome. Some of these other symptoms sound like they could be Extra Infections Manifestations. There is a section for those. I wish you the best.
 
Hi Katrina

Sorry you are having a tough time. How quickly the entocort kicks in is completely up to the degree of the disease progression. It sounds like your crohn's went untreated for quite awhile so I would try and give it more time on the Entocort before throwing in the towel with that med.

As for the strange symtoms, I would bet entocort is the reason for most of these "unordinary" symptoms so make sure you bring this up with your doctor and he or she will likely put you on a different steroid or medication entirely.

Crohn's can actually cause eye issues in a small percentage of patients so I would seek out a referral to an ophthalmologist to make certain that that isn't the case although with no pain accompanying the eye symptoms, i doubt that's the case.

For now stick with the entocort (or other steroid the doctor may prescribe you) and possibly some lower line drugs like Pentasa, while maintaining a consistently safe diet and see where you are in a few weeks. If you aren't improving then exploring other treatments like biologics or extreme diet changes would be your best bet.

Also, I live in LA too :) !

All the best, Gianni
Thank you so much for your reply, Gianni! I really appreciate it!
Unfortunately, all these "unordinary" symptoms began even long time before starting the treatment. So I'm trying to figure out if it could be a possible Crohn's symptom or it's totally something else. The docs also have put me on Pentasa earlier, but for some reason took me off it, thinking it wouldn't really help. So for now I'm just sticking to Entocort.

And it's great that you're also in LA, I hope you're doing and feeling well! I was also wondering if you have a nutritionist here that guides through everything, because I'm so lost now on what I should eat and how I should live to stay in remission.

Thank you so much for your help!
Best wishes,
Katrina
 
Thank you so much for your reply, Gianni! I really appreciate it!
Unfortunately, all these "unordinary" symptoms began even long time before starting the treatment. So I'm trying to figure out if it could be a possible Crohn's symptom or it's totally something else. The docs also have put me on Pentasa earlier, but for some reason took me off it, thinking it wouldn't really help. So for now I'm just sticking to Entocort.

And it's great that you're also in LA, I hope you're doing and feeling well! I was also wondering if you have a nutritionist here that guides through everything, because I'm so lost now on what I should eat and how I should live to stay in remission.

Thank you so much for your help!
Best wishes,
Katrina
You might want to ask your doctor about Lialda?
 
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