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Crohn's Disease Forum

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Hello, I am Nicole and I am 24 years old. My story has a lot of parts so I am just going to stick to the important parts. I have had stomach problems for years and years, pain diarhea, vomiting ect. I have dealt with it for a long long time, and was told at one point to eliminate gluten to see if that helped (it didnt but I was on a gluten free dairy free diet for 4 years which I recently just gave up on). Last month I was grocery shopping and I was in such severe pain that I had to go to the ER. The ER found via CT scan inflamation of my illeum and terminal illeum. I went the next day to a GI specialist who sent me for a colonoscopy. The colonoscopy was clean, and sent me for upper GI/SBFT.
I just got the call yesterday that I do in fact have chrons based on the SBFT. I dont know how severe or what the treatment plan is at this point. I am very scared of what could happen. I dont know what questions I should ask at my doctors appointment, which is on tuesday.
The other side of this is I was diagnosed with fibromyalgia because of severe body aches, could this be related? I just dont even know what is going on with my body, if it is all related to the crohns or not.
 
Hello Nicole and :welcome: to the forum. I am sorry to hear about the diagnosis of crohns but you have come to the right place to get better informed about it. Do have a good nosy around and perhaps arm yourself with a pen and paper so you can write down anything that pops into your head that you would like to ask about. I think the main place to check for now is perhaps the treatment sub forum as this has info on the meds that get used for crohns.

One thing to remember about this appt is that it is your chance to ask away regarding severity, treatment and also the potential relationship with your other diagnosis, take your time and do not be rushed. If something is not clear to you ask for clarification, it is very important that you come away feeling comfortable with what you have been told.

I do hope you can feel better soon and please let us know how you get on next week.

xxx
 
Greetings and welcome to the forum! I'm glad you finally got a diagnosis.

First off, yes, the Fibromyalgia could very well be related to the Crohn's Disease. I'm personally not a fan of a fibromyalgia diagnosis as it's more of a, "You have widespread pain we're not sure why and aren't going to do enough tests to figure it out because if we would have done enough we would have found that you have Crohn's Disease..." type of diagnosis.

Sorry for the rant there.

Anyway, have you had your vitamin D, vitamin B12, and folate levels tested? People with Crohn's Disease are commonly deficient and... drumroll... such deficiencies can lead to symptoms that coincide with fibromyalgia.

Again, welcome, I'm glad you're here :)
 
Welcome Nicole! I'm 26 and was diagnosed with Crohns at the age of 24 as well. I'm not to much help in the other areas, but you have found the right forum to help you in support to the Crohns
. I hope you get all the answers you need from your GI, don't worry yourself to much, stress will only make the crohns feel worse. Hang tight and if you need a friend, I can try to help you with what I know:)
 
David, that is kinda how i feel about the fibro diagnosis right now. Im questioning if it is fibro and not extra intestinal symptoms. I am going to ask tomorrow when i go in to have my vitamin levels checked, as i want to cover all my bases. I have a whole page of paper filled with questions for the doctor. Im hoping he is patient with me and listens when i say i am in horrible pain not just from the stomach but all over my body. Its very frustrating, and its been 4 years since this all started! Though the stomach pain recently has been a nightmare more so than ever before.
 
Good for you! Good luck and keep us updated! And get the exact results of your vitamin levels. It's good to start tracking them.
 
My mum has had Crohn's for 40 years & developed fibromyalgia about 7 years ago although her Crohn's appears to have symptoms have now settled somewhat & she hasn't had a major flare for many years.
She takes amytriptaline for the fibromyalgia.
 
Hi Nicole, was just reading your thread and so much of what you said resonated with me, though for different reasons. Mostly, I totally get the whole "I don't even know what questions to ask" thing. I'm seeing a new doctor on Wednesday and thanks to this forum, I have questions I know I should be asking.

I have leukemia and have had the aches and pains (some days, I was taking motrin like M&Ms). I will say, based on some of the posts I read here, I have started a (mostly) gluten free diet and have started taking B and D vitamin supplements, along with a daily multi-vitamin. Not sure why, but the last week or so, I feel pretty darn great. All of the symptoms I ascribed to chemo are either greatly improved or gone entirely. I wonder, now, if they were all Crohn's-related for all these years?

Anyway, I'm still a newbie, too, but after a month, I feel like I might actually at some point get a handle on it. A month ago, I was so overwhelmed. Hang in there!

Suzanne
 
Looked this up online as I was curious myself after you asked.

Question: Is Fibromyalgia an Autoimmune Disease?
Some websites and books called fibromyalgia an autoimmune disease, but others say it's not. Is fibromyalgia autoimmune?
Answer:
No -- or at least, it's not classified as one at this time.

Because fibromyalgia was once believed to be an arthritis-related condition, and most arthritis is autoimmune, the assumption was that fibromyalgia fit into this category. However, thus far researchers have not uncovered any evidence of autoimmunity in fibromyalgia.

In autoimmune disorders, the immune system attacks a particular tissue or structure in the body. It typically causes damage and inflammation at that site, and these are traits not observed in fibromyalgia. However, right now we don't have enough solid evience as to the central mechanism of the illness to rule out many possibilities.

In fibromyalgia, irregularities in hormones, neurotransmitters (messengers in the brain) and enzymes (substances necessary for chemical reactions) are widely believed to be responsible for symptoms. Some researchers, however, suspect the immune system may be somewhat irregular in people with fibromyalgia.
 

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