Extraintestinal sypmtoms only with Crohn's?

[swimbikerun]

I think I have asked this question before but want to try one more time as my GI has suggested that I start Remicade infusions and I am frankly worried and not confident that the right diagnosis has been reached. I need this confidence to move ahead with the treatment.

First, I have been a relatively active and healthy person my entire life. I exercise, am of a healthy weight and eat a fairly decent diet. I started experiencing a slew of pain and discomfort in various parts of my body about 7 months ago that have gotten increasingly worse. ALL of these pains have been what you call extraintestinal with the worse symptoms being in my ribs, upper back, sternum and diaphragm areas. I have had no bathroom issues for which I am very grateful but this is also why I cannot get myself to be confident that my dr's have the correct diagnosis. I also do not have any other health issues that I am aware of.

So what I am after is anyone who fits this general description. Is there anyone out there who is confident they have Crohn's but does not have the typical Crohn's symptoms and is otherwise "healthy"? Of course, at this point I'm not even sure what "healthy" means anymore...other than pain free. That would be a nice thing.

Thanks in advance.

 

[ronroush7]

Is any of it like arthritis pain? You could check with a rheumatologist.

 

[teeny5]

How did they diagnose Crohns? What tests were run?

 

[swimbikerun]

ronroush7 - not sure but have an appointment with rheumy just in case.

teeny5 - colonoscopy uncovered ulcers in TI.

Thanks for your responses. I'm guessing that my answer is "no", not many people have active crohn's without any bathroom issues.

 

[ronroush7]

Everyone's symptoms are a little different.

 

[my little penguin]

You can tagging Clash
Her son
No outside symptoms
But definitely active Crohns inside

 

[Catherine]

My daughter is now 22 year old, she was dx with Crohn's at 16 years. She has never had bathroom issues.

 

[swimbikerun]

@Catherine - thank you! I just read your old post concerning the years prior to your daughter's diagnosis of Crohn's. It was helpful to see. My diagnosis did not take anywhere near that long so I am trying to be thankful about that and accept the treatment - biologics. I'm getting there but it is hard to contemplate a lifetime of medication as you said. Almost every test that has been run on me is normal - blood work, MRI's, etc. so I struggled when I first heard the diagnosis as I had no typical symptoms.

It sounds like your daughter was very active prior to her run in with Crohn's. Did she go back to her swimming afterward treatment started? And if so did she do anything with her diet or other facets of her life to help? I too was very active prior to the start of my pain. I have continued to try to be active but have quickly gone from someone who could run a 1/2 marathon or swim a mile with relative ease to someone who is happy if I can walk a few miles without pain afterwards. My hope is that treatment will let me get back to my active lifestyle but would really like to know what others have done to help themselves in addition to the medical side of things.

Thanks in advance for any insights you can share and I'm sorry that it took so long for you daughter to get the correct diagnosis. I have only been dealing with my pain for roughly 10 months. I can't imagine 4 years.

 

[Catherine]

Sarah is currently in a flare. Blood tests are normal. She has stomach pain. Her faecal calprotectin is over 600. This is very high for her.

She went back to swimming but could never get the times she had prior to Crohn's but you have remember she was very sick prior to dx. She has found a new normal and still very much wants to get of medication. She was also at age when most stop competitive swimming.

She has not changed her diet in any way. Although she doesn't eat much diary when flaring as during a flare she has lactose intolerance.

 

[ronroush7]

Sarah is currently in a flare. Blood tests are normal. She has stomach pain. Her faecal calprotectin is over 600. This is very high for her.

She went back to swimming but could never get the times she had prior to Crohn's but you have remember she was very sick prior to dx. She has found a new normal and still very much wants to get of medication. She was also at age when most stop competitive swimming.

She has not changed her diet in any way. Although she doesn't eat much diary when flaring as during a flare she has lactose intolerance.

I hope the best for her.