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Crohn's Disease Forum » Tests for IBD » CT Scans and Misc. Questions


05-02-2017, 06:14 PM   #1
ladyofart
 
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CT Scans and Misc. Questions

Hello! To start I am 26 years old, and I just have a few questions. I'm currently being seen by a couple of doctors because I have a cluster of neurological symptoms as well as gastro symptoms (currently not seeing a gastro doctor).

For now, I will be focusing on my gastro symptoms.

Back in 2008 I had a bout of rectal bleeding and severe cramping that landed me in the ER. I drank what I believe was a barium solution (not sure but they mixed it with club soda) and then did a CT scan that revealed inflammation. I'm attempting to get the records from this event, but I /believe/ it was the terminal ileum that was inflamed. I was a minor at the time and my parents didn't "believe" in doctors, so I never had a follow up to this even though I went through the symptoms for several weeks after the ER visit.

I've had some bleeding on and off over the years, but nothing really alarming. But I have had an increasing amount of cramping and sharp pains in my abdomen/pelvic region. Last year (late 2016) I was vomiting, passing out, and had severe cramping which landed me in the ER. I had abnormal blood results and after a CT scan it is discovered that I have thick walled enhancing inflammation of the terminal ileum (adjacent to my right ovary, along with possibly ovarian cysts), a mildly enlarged spleen, and some mild kidney retention.

My main question is about the CT scan findings, because it reminded me of the scan I had 9 years ago. If there is inflammation in the bowel/intestines does it tend to stay in the same place if left untreated?

I intend to ask my doctor about the possibility of Crohn's Disease (My previous PCP suspected I may have Crohn's, but my insurance dropped the network she was working in and it took me many months to find a new doctor, and we are currently focusing on my neurological symptoms at the moment since my walking is affected).

What are your thoughts?
05-02-2017, 06:20 PM   #2
ronroush7
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Welcome. There is the possibility that if it goes untreated that it could get spread. I would try to look for a gi if possible. I hope you feel better soon.

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05-02-2017, 06:46 PM   #3
Scipio
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Yes, inflammation usually spreads over time if left untreated. Ulcerative colitis usually starts at the rectum and spreads "upstream" in a continuous fashion. Crohn's, by contrast, can start anywhere in the digestive tract (although the ileum is most common site) and spreads in either direction in a spotty or patchy fashion - skipping over some areas and inflaming others.
05-02-2017, 11:08 PM   #4
Jabee
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The terminal ileum is the most common site for crohn's (though lots have it in other parts of the small and large intestine too). I would definitely ask about crohn's and get a referral to a GI. Sounds like you have a lot on your plate. Have you checked to make sure you don't have any nutritional deficiencies? Small bowel inflammation can result in malabsorption of nutrients and that might be exacerbating your neurological problems. I hope you get some answers soon.
05-03-2017, 03:34 AM   #5
DEmberton
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If you have long term inflammation it can build up scar tissue and cause a stricture. This is what happened to me, though it took 20 years for it to get really bad.

It's also highly likely that disease in the Terminal Ileum will cause a B12 deficiency (which is where it's absorbed), and if that goes unchecked causes neurological symptoms...

You'd hope the doctors have checked that, but definitely ask. It's possible they haven't made the connection.
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05-03-2017, 10:14 AM   #6
ladyofart
 
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Oh wow, there are so many replies!

Some of my medical care has been really sporadic over the years because of insurance issues and lack of access (I was a college student without a car), so I could understand how my medical history may be missed by my new doctor.

To my knowledge I was checked for a number of nutritional deficiencies in September of last year. The only nutritional deficiency that flagged was Vitamin D and I took a very high supplement for a few months. I also had a low anion gap and slightly elevated protein levels. That was also around the time that my insurance dropped and I haven't had a follow up for those results with my new doctor. I'm actually going in tomorrow to have my blood tested for several things (including lupus since that runs in my family).

From what I gather it is possible for inflammation to show up in the same place on a CT scan over time? I understand that it has the potential to spread, but I suppose I'm wondering if it is common for inflammation to show in the same, or at the very least in a similar place that it had been before?

Also, my previous doctor wondered if I should have had an upper endoscopy due to issues with nausea. Have any of you had one of these tests? I chickened out because my mother had one and it damaged her throat permanently, but I'm not sure if the technology is different than when she had one many years ago.
05-03-2017, 10:23 AM   #7
Scipio
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...but I suppose I'm wondering if it is common for inflammation to show in the same, or at the very least in a similar place that it had been before?
The answer is yes, it's certainly possible for inflammation to show up twice in the same spot. Or more likely, due to spotty care, the inflammation never went completely away - just died down a bit and then flared back up later. Plus, Crohn's seems to favor certain spots in the gut, the terminal ileum for example. So it's also common to get repeat bouts of inflammation in those trouble spots.
05-03-2017, 11:10 AM   #8
DEmberton
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From what I gather it is possible for inflammation to show up in the same place on a CT scan over time? I understand that it has the potential to spread, but I suppose I'm wondering if it is common for inflammation to show in the same, or at the very least in a similar place that it had been before?
Well the majority of us have Crohns in the TI, so it does attack the same place. Even if you weren't aware of any symptoms you might have had inflammation there for years.

Also, my previous doctor wondered if I should have had an upper endoscopy due to issues with nausea. Have any of you had one of these tests? I chickened out because my mother had one and it damaged her throat permanently, but I'm not sure if the technology is different than when she had one many years ago.
I had that a couple of times, in fact I think the reason I was misdiagnosed (with IBS grrr) the first time was because they gave me the gastroscopy (upper endocscopy) but for some reason didn't think to check the other end.

More recently they gave me both because I was complaining of nausea and belching, but my problems were all at the TI.

Vitamin deficiencies can be tricky as different things can interact with each other. Neurological problems and inflammation of the TI absolutely screams B12; doesn't mean that it can't be anything else, but historically doctors have been poor at spotting it and it's really simple and cheap to fix with injections.
05-03-2017, 12:15 PM   #9
Scipio
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I had an upper GI endoscopy at one point. It left my throat sore for a few days but certainly no permanent damage.
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