Greetings from a Newbie ... Diagnosis question

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New Member

Date Joined Oct 2008
Total Posts : 1
   Posted 10/19/2008 1:45 AM (GMT -6)   
Greetings all! This is my first post on here so forgive me for rambling ...

I'm a 29 year old male, diagnosed with CD about 10 years ago. So far no surgeries or blockages, was on Pentasa, then switched to Remicade for 5+ years until I had a couple reactions to it, now on Humira (for about 6 months now).

I've been pretty good overall so far with this, however recently there's been a change in my symptoms that has dumbfounded my GI. I was hoping I could get some perspective here and maybe an idea or two of what this is.

What's been going on:

about a month ago now I started getting really severe cramps in my upper abdomen. They would last about 20-30 seconds (knee-bucklingly intense) and pass. But they would come back every 2 to 5 minutes. I've had cramps like these before, but they usually lasted 24 hours and were very rare. This time though, they lasted for 3 days and I threw up (only 2 times) on the second day. I did not eat for those three days.

My first thought was it was a blockage ... but after 3 days it passed and the cramps tapered off. I actually felt pretty healthy for the next 4 days. I wrote it off as not being anything other than a reaction to something I ate, maybe even the flu. But on the 5th healthy day, it came back. Same intense cramps, the vomiting and liquid stools (basically water). Well now I was CONVINCED it was a blockage. So I called my doc, he set up a CT scan. We also doubled my Humira dosage to see if it would knock it out.

By the time I got the scan, the cramps had subsided again. The scan showed there was no blockage and the Crohns was slightly inflamed, but my appendix was really inflamed. So they thought it was appendicitis. Thankfully my GI talked them out of cutting me open there as my symptoms didn't match it. Instead he believed it was just the inflamed ileum that was causing the radiologist to read it as appendicitis.

But the CT scan also showed I had gallstones. So my GI referred me to a surgeon and we discussed the options. The issue was both my GI and surgeon weren't able to pin down a diagnosis. They viewed it as three likely candidates, but none were iron clad.

1. It was the gallstones causing the pain: The CT scan showed I had 'em, but my symptoms didn't line up 100% with this. The surgeon felt it was about a 60% chance this was the cause.

2. It was appendicitis: The CT scan showed slight inflamation here, but my symptoms don't match up at all. The issue here being that if they take the appendix, they might have to take the diseased section of my ileum as well since they need to exercise healthy tissue (and there might not be any when he goes in).

3. It was a blockage/Flair up: The symptoms fall most in line with this conclusion -- however the CT scan shows that there isn't a blockage. While my GI was favoring doing some sort of resection, the surgeon did NOT want to do this because of the old adage of avoiding cutting for CD for as long as possible.

After debate, they decided to take my gallbladder because it was the lowest risk and also since I had stones, it would need to go at some point.

Well, I had the surgery on the 1st. Went fine. The surgeon looked around and told my mother (I haven't spoken to him yet cause I was out of it obviously) that he saw the CD and it was not the worst he's seen. However three days later the cramps were back. This time accompanied by loud GI gurgling and digestive sounds when the cramps "passed".

I've been sick 2 times since the surgery. They haven't been as bad (only threw up once), but the cramps are still there. They aren't AS intense, but there is more gurgling and sound with them (my own symphony!), and my "good days" now have not been as good. Since the surgery I have NOT met with my doctors ... but am scheduled to do so next week.

Since I first got sick, I've lost 30 pounds (from having 3 days at a time where I can't eat!). Grant it, I like the whole being skinny thing, but I miss being able to eat. I've been limiting myself to a liquid diet mainly (soft pastas, Ensure, water, some tuna fish and scrambled eggs here and there) mainly because I'm 99.99% sure this is just a flair up.

The only way I can describe it is that I can sometimes almost feel stuff passing through my ileum ... but the pain (mild to severe) echoes through the abdomen. Sometimes in the upper quadrant, sometimes lower ... it kinda moves. I also feel it when I walk around or change positions suddenly.

Anyway, this is the longest post EVER. I'm sorry for the length! However I'm just trying to get ideas as to what this is and how to combat it. I need to break this cycle of being healthy for 2 or 3 days only to be sick for 4.




Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 10/19/2008 7:11 AM (GMT -6)   
Hi FDC I too had lots of stones in the gallbladder a couple of years ago they told me that. I still have it .I was having blockages and was dealing with that. Sounds to me it might be the TI area and the app.perhaps too that is causing the problems. There could be some scarring at the TI that is causing some narrowing. How was the gallbladder surgery?You are loosing alot of weight though are you feeling weak ? I know before they resected me I couldn't eat much either and the pain just wouldn't go away. Now I am able to eat and feel better I do stick to low roughage diet. Does your Dr. think the Hum. will help. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still gail

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 10/19/2008 7:11 AM (GMT -6)   
Forgot to say welcome we are very glad you are here with us. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still gail

Regular Member

Date Joined Dec 2007
Total Posts : 298
   Posted 10/19/2008 4:16 PM (GMT -6)   
Was your CT done with oral contrast? I know I had two CTs done with only IV contrast and the radiologist did not recognize inflammation. But when I had oral and IV contrast, the doctors immediately saw that I had inflammation and narrowing at the terminal ileum.

Are you running a fever?

I also had upper abdominal pain for a while before being diagnosed, and the inflammation is only in the terminal ileum. My doctor said that although the inflammation is in one area, pain can be felt in other places. He offered no explanation as to how this works though  tongue When I was going through the diagnosis process I also had my gallbladder checked. Back then I read about sphincter of Oddi dysfunction. Some percentage of people who have their gallbladders removed still have pain due to that medical problem.

July 2007 Drug-Induced Liver Injury
January 2008 Crohn's Ileitis
Currently trying...
Entocort, Enteral Nutrition, Omega-3 (Flax Oil and Fish Oil), VSL#3, Vitamin E

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 10/19/2008 5:36 PM (GMT -6)   
Gosh, FDC, I've no ideas either. It sounds like a blockage and CD to me, too. This must be incredibly frustrating for you.

Anyway, welcome. I hope *someone* here will have some ideas for you,

Co-Moderator Crohn's Forum.

Veteran Member

Date Joined Jan 2007
Total Posts : 3200
   Posted 10/19/2008 5:52 PM (GMT -6)   
Hi and welcome, I hope you can come to some decision soon.

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis
B12 Shots bi-weekl

Positivity, while not a cure, is positively far better than negativity.
"Mental attitude can move mountains" A message from my son.

Veteran Member

Date Joined Jun 2008
Total Posts : 1058
   Posted 10/19/2008 6:03 PM (GMT -6)   
The cramping and the pain moving about sounds a bit like IBS. It sounds a bit more severe than usual for IBS and it's unusual for you to get both Crohn's and IBS at the same time. Just a guess, so ask your doctor.
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