Crohn's Disease Forum » Support Forum » Undiagnosed Club » No Symptoms - ulcer in terminal ileum


01-30-2016, 01:25 AM   #1
mhdad
 
Join Date: Jan 2016
Location: California
No Symptoms - ulcer in terminal ileum

Hi Everyone,

I am in the middle of the diagnostic process and wanted to share my experience to see if anyone has any insight into my particular case.
In December I went in for a preventative/cancer screening colonoscopy.
My colon was clear except for an ulcer in the terminal ileum.
I have no symptoms at all.
The GI who did the colonoscopy said "normally I would say this looks like Crohn's, but since you have no symptoms, I'll have you come back for a camera pill endoscopy and some blood work".
I am 51 and this was my first colonoscopy. I left mostly unfazed and waited a little nervously for the pathology report to come back.
A few weeks later, the doctor called to say that the pathology report suggested "early Crohn's but further clinical testing is strongly recommended".
My insurance company rejected the pre-approval for the camera pill endoscopy and instead they are asking me to have a regular endoscopy along with a CT scan / x-rays. My GI doc thinks the camera pill is the better way to go at this point and doesn't think I need to do the more invasive regular endoscopy.
While we wait for that decision I have gone ahead and had the IBD serology blood work and am waiting for those results.
It has been about 7 weeks since my colonoscopy and I have read an enormous amount online about Crohn's and needless to say I am pretty freaked out -- having learned about many of the degrees of illness and worse case scenarios. I've also researched all the different kinds of treatment options and have ended up in an exhausted anxiety-ridden heap.

I'm curious if anyone on the forum started out asymptomatic with just one ulcer in the terminal ileum. My regular internist said I could very well remain symptom free for the rest of my life and reminded me that this still could be something else and may end up being an "incidental ulcer" that resolves on it's own.
I have no other known health problems and have always been in peak physical shape with an excellent diet. I did have fatty liver once about a decade ago but reversed it with diet and exercise.
The only other part of my story is that I have been under heavy stress for the past year or so, which involved a family death with one parent and a serious illness with another.

Any thoughts / insights or shared stories would be welcome.
My main concern right now is that if this is Crohn's, what are the best treatments for someone who has no symptoms and no visible active disease in the colon from the colonoscopy. My internist said any of the Crohn's treatment medications would do more harm to me than good at this point.

Thanks for listening and I look forward to any ideas, thoughts or suggestions.
01-30-2016, 03:08 AM   #2
fuzzy butterfly
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Location: manchester, United Kingdom

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Hi mhdad. I do hope that it turns out to be an incidental ulcer. If your further tests show no active inflamation. They may well leave you med free for a while and just keep an eye on you. They do seem to be doing as much as poss to find out whats going on. Best wishes. 💕
01-30-2016, 09:36 AM   #3
ronroush7
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Location: vienna, Virginia

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I hope you don't have Crohn's.
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