Diagnosed (I guess?)

[Selena]

Hi everyone!

I've been creeping around this website for a couple of months now, reading everyone's stories, and I finally decided I would say hello!

Well, My name is Selena. I'm from Ontario, Canada and I'm 22 years-old. I guess I can say I was diagnosed today. Although I'm still a little confused. At my last appointment with my GI, all he said to me was that my ct scan results showed inflammation in my small intestines. Although I have been suspicious of Crohn's Disease, he told me that there were a few things that could have caused this - including a parasite, or some type of infection. He said that he would reffer me for an MRI enterography. However, today when he faxed over the refferral (he needed my signature) I saw that it says "Diganosis: Isolated Small bowel Crohn's disease with thickening, 20-30cm in the jejunum". I'm a little annoyed and confused as to why my Doctor never told me this personally, should I consider this a diagnosis?

I also have another question...I had a laparoscopy done this past Friday, and the surgeon told my parents that all of my organs were inflamed, and while normally they would turn red and then back to white when touched, mine would stay red and looked "irritated". He said he was suspicious of something like Lupus, although he was not an expert in that field (he's a gynecologist). I'm just wondering if having inflammation or irritation of other organs is something that is related to Crohn's disease? Or if this could be something else. Any thoughts would be greatly appreciated!

It's wonderful to have someplace like this to talk to other people who are going through similar things, and I'm very happy to be here!

Hope everyone is doing well,
Selena

 

[MADiMarc]

Selena,
Welcome! Well, what a way to find this out, huh? As I am sure you figured out, each of us presents differently at different times. Very annoying disease!
I can't give you the answers to your questions but check back as most of the people on this forum are much smarter that I can ever hope to be.
Michele

 

[Astra]

Hi Selena
and welcome

I'm not familiar with Lupus, can't help you there, but that dx sounds right for CD, I have Crohns in terminal ileum and my dx said something similar about thickening etc
Others will come and advise about Lupus and Crohns.
Glad you found us, enjoy the forum!
lotsa luv
Joan xxx

 

[xJillx]

Welcome to the forum! I feel for you while you are in the process of being diagnosed. It is a scary time. But, hopefully, once you get your diagnosis you can begin taking the appropriate medication and start feeling better. I know a little about Lupus being that a friend of mine is in the process of being diagnosed. From what she has told me, it is an autoimmune disease similar to Crohn’s. But unlike Crohn’s that limits itself to the GI tract, Lupus can affect all of the organs. She also has an immense amount of muscle & joint pain; but this is common with Crohn’s, too. Though there isn’t a cure for either, treatment of anti-inflammatories and immune-suppressants are used for both with the goal of the patient going into remission. I wish you luck and keep us posted!

 

[Selena]

Thank you so much for you replies!

I don't really think I have many symptoms of Lupus...other than pain in my joints (which is most likely caused by Crohn's). I just couldn't find any information on Crohn's causing inflamation in other organs...so I'm just a little confused as to what could be causing that. I'm also not really sure who I should see for that? Has anybody had any luck seeing an internist? Or would this be something I should talk to my GI about?

The doctor that did the surgery said he took detailed notes, but that this wasn't in his area of expertise. So I'm not sure who to talk to?

Thanks!

 

[MADiMarc]

Have you googled Lupus? I would try that. Also, I don't really know how the health system works in Canada but can your GP or PCP recommend the proper specialist? I normally start there.
Good luck,
Michele