Crohn's Questions

[Joyful Franky]

Hi,
I'm new to this. I stumbled across this site looking for some information that I can't seem to find. To start off, I am undiagnosed. i constantly experience some kind of pain,nausea, or cramping in altering parts of my gi tract. I hope that makes sense. I've been looking for answers for probably about 7 years now to no avail.

I have many, if not most of, the symptoms commonly related to Crohn's disease including the mentioned above, constipation (I know diarrhea is more common however I read occasionally constipation is experienced instead), chronic ulcers in my mouth, basically no appetite, weight loss, and extreme temperature changes (freezing to basically a hot flash). I have a mysterious stabbing pain in my lower right abdomen that no one has ever found a reason for. This pain is the worst I've ever experienced (gi related).

The only symptom I lack is inflammation, and that seems to convince my specialist that I don't have Crohns. Is it possible I could have crohns and not have inflammation?

I've had 2 colonoscopys, 2 endoscopys, and thousands of imaging and blood work done.

I apologize for this long post. But I'm so desperate and I'd really appreciate some input to know if I'm overthink this or not. Thanks so much.

 

[ronroush7]

Hi. I don't know for sure. Everyone's symptoms are a little different. Keep at the doctor until you get some answers. Let us know.

 

[Scipio]

I've had 2 colonoscopys, 2 endoscopys, and thousands of imaging and blood work done.

What did these colonoscopies and imaging procedures show?

Crohn's definitely an inflammatory disease, so if you have Crohn's you have inflammation somewhere. The question is where is it and how is it manifested?

 

[Joyful Franky]

Well the upper endoscopy came back with esophagitis (spelling?)
The colonoscopy showed nothing apparently. A previous pediatric doctor told me I seemed to have all the symptoms except inflammation and that there was a possibly it could manifest itself/show up later? But my current gi swears I don't have it despite so many of my symptoms, but has no other suggestions. Is it possible my pancreas or appendix could be inflammed? I get pain right "around" my appendix but have never had appendicitis. A lot of things seems to add up but every doctor just ends up stumped and not really being able to help me.

My imaging show an ulcer when I was younger, I had/have a hiatal hernia, I had a fungal infection in my stomach. But above all these things my symptoms have stayed constant through and after they were solved.

I am scheduled to see a new GI at penn medicine. And I'm truly hoping he has more to offer.

 

[Joyful Franky]

What did these colonoscopies and imaging procedures show?

Crohn's definitely an inflammatory disease, so if you have Crohn's you have inflammation somewhere. The question is where is it and how is it manifested?

I replied above but I wanted to add I suffer from chronic widespread pain in my joints, muscles, and even nerve pain. I am "diagnosed" with fibromyalgia which I definitely agree, but I can't help but wonder if I do have crohns and it's intensifying my unexplainable pain

 

[Scipio]

Right around the appendix is very near the ileum portion of the small bowel, which is the most common site of Crohns inflammation.

Do you know if the doc managed to get a look at the terminal ileum when doing the colonoscopy? Not all do, since it is not part of the colon. Some just stop once they've seen the whole colon and do not attempt to get the probe into the small bowel.

Another thing to consider to get a look at the entire small bowel is capsule camera endoscopy. That's how my Crohn's was detected. In my case, like you, they couldn't see anything abnormal by either upper endoscopy of colonoscopy, but they found aphthous lesions in the small bowel by the pill cam.

 

[ronroush7]

I hope that he can give you a diagnosis.

 

[cmack]

Welcome Joyful,

I'm not sure what, but something is going on for sure. I hope the new GI has some answers for you. Keep us updated on what you find out. We have all suffered from these types of things in one way or another so you have found a good understanding bunch here.


Welcome again,

Chris

 

[Joyful Franky]

Spicio :
I'm definitely going to remember this for my next (first) appointment. The area around my appendix probably wasn't seen because it wasn't mentioned. It makes a lot of sense. Im so thankful you mentioned that.

Thanks for the warm welcomes everyone! It's helpful to know there are other people who totally understand.