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Ulcerative Colitis
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Posted 11/18/2012 9:09 PM (GMT 0)
My son (9 yrs. old) had a colonoscopy last week. I was horrified when the doctor told me that it could be Crohn's because there were small spots of mild inflamation and then other spots of healthy tissue. She said that this type of "skipping" usually points to crohn's. The only thing I question is that he is on alot of medication that I think is helping to control it. Pentasa, Azathioprine, and 2 mesalamine enemas per day. In fact, a couple months ago, he had a sigmoidoscopy that showed inflamation lower in the colon. The lower colon didn't show any inflamation during this last exam which must be because of the two enemas he is getting each day.

Has anyone ever had this happen? Luckily, the Doctor did biopsy's throughout and I will get the results in 2 weeks. I just hate having to wait so long when I am so worried.

My son also had an endoscopy and the entire small intestine looked good visually. He had an upper GI, small bowel follow through and the radiologist said things looked normal but I am still waiting to hear what the GI thinks. Last week was so stressful!

Does anyone have any thoughts on this?
Posted 11/19/2012 12:45 AM (GMT 0)
Susan, it's very hard to tell whether it is Crohn's or UC. You have to find a doctor you trust and get 2nd opinions if you're not sure whether you're getting the best information. Even with biopsy results showing one way or the other, I believe they can be inaccurate. I agree with what you say, the fact that he had nothing seen in the upper endo is GREAT. The skipped pattern can very well be caused by the enemas. I wouldn't get too caught up in thinking the worst. Have you considered trying another 5ASA instead of Pentasa? Pentasa is used more for Crohn's and treats a higher area. Asacol, Lialda, Apriso, Colazal are more often used for UC... I wouldn't worry too much about what they want to call it, the best thing to do is to try to find a treatment that works for him. The only real negative to Crohn's is that it isn't "cured" with surgery. Let's hope he never needs surgery regardless of the diagnosis.
Posted 11/19/2012 1:51 AM (GMT 0)
Was this his first scope? Did he have skipping throughout or only in the lower part (where the enema would have hit)? This distinction between UC and CD is not as simple as we're made to believe and really the docs can never be sure. I know it's scary - I live in fear that my daughter's "UC" might actually be "CD".
You might find this interesting if you've not seen it already:

http://www.ncbi.nlm.nih.gov/pubmed/17460505
Posted 11/19/2012 1:55 AM (GMT 0)
It sounds more like CD rather than UC...even with the medications and healing process, from what I was told from my doc and what I've read...it heals pretty evenly downward, not in skip patterns.
Somewhat diffused areas, i can see and some areas a bit worse than others, but the entire area would be "inflamed".

Regardless, many of the treatments are the same.

q
Posted 11/27/2012 9:16 PM (GMT 0)
Sorry it took me so long to post back, but thanks so much for your responses. I think the responses gave me some much needed perspective. I started sleeping at night instead of laying awake anxious. We went out of town for Thanksgiving but I'm back and wanted to post back.

Back when my son first became sick, before we knew it was UC, the ER I took him to did a CT Scan. It showed his entire colon was inflamed. The doctor in the ER started running all types of bacterial and parasite stool tests and immediately put him on an antibiotic and sent us home. My son didn't get better, lost more weight and became anemic and we ended up at the children's hospital. That was where he had his first colonoscopy but his rectum and lower colon were so inflamed that the doctor couldn't go up into the colon very far. I'm not sure if this is all they based the UC diagnosis on or if there were other things that led to it. I know my son was passing a lot of blood and having bad cramps. He also ran a fever off and on. I know there were biopsies done, but the doctor never explained what they found, I'm guessing inflamation. He did show me the pictures of the lower colon so that I could see the inflamation.

He was put on Pentasa, Azathioprine and prednisone and slowly got better and was weaned off the steroid. He was in remission for a short time and had another flare this past August. The doctor wanted to do a sigmoidoscopy. It showed inflamation in the rectum that got better the farther he went up the colon. Therefore, we started the mesalamine enemas which really seemed to help with formed stools, no blood. I had trouble weaning my son off the prednisone during this last flare. I think the doctor became frustrated that it wasn't working and wouldn't call me back. I ended up weaning him off based on a lot of information I found on this site on what worked for others. Meanwhile, I started searching for a different doctor. We saw this new doctor in October and she immediately questioned why he was on Pentasa instead of Asacol. She couldn't believe that he had never had a full colonoscopy She decided to leave him on the Pentasa until she did the Endoscopy, Colonoscopy and Upper GI, small intestine follow through. So.....two more days and I can call for the results of the biopsies.

Meanwhile, whatever it is (Crohn's or UC) at least he is in remission! Two formed stools per day, no blood, and no stomach cramps!!! He is happy, swimming with his swim team, playing his guitar and fighting with his two older brothers!
Posted 11/27/2012 9:36 PM (GMT 0)
Susan, I'm glad you had a nice thanksgiving and that your son is feeling better.

I want to understand something you wrote in your original post - you wrote that he had an upper endoscopy in which the entire small bowel was visualized.  I think this is highly unlikely.  A typical upper endoscopy shows the esophagus, the stomach and the duodenum and that's it.  That leaves about 20 feet of small bowel unseen by the DR.  The small bowel follow through shows if there are areas of significant inflammation, but other than that you cannot detect small ulcerations or areas of relatively minor inflammation with this kind of imaging study (x-ray).

There is a new kind of upper endoscopy, done in just a few hospitals, where the small bowel is pulled up via a balloon device so the DR can see almost all of it.  Since you didn't mention this (double balloon endoscopy) I doubt your son had it.

There is also a pill camera that adults can swallow to visualize the small bowel, but I would think a 9 year old could not do this test.  Perhaps now that the small bowel series shows no strictures this is an option for you.

I understand why you might be worried about a Crohn's diagnosis vs. a UC diagnosis, but frankly I would suggest that each type of IBD is as bad or as good as the other.  It's great that you got him on meds and that he's doing alright.

Posted 11/27/2012 10:34 PM (GMT 0)
Your correct, I stated that wrong. He had the endoscopy and "what they could look at" looked good as far as there was no visual inflamation. They could see the entire small intestine during the small bowel follow through and the radiologist said that it looked normal but I haven't heard the GI's opinion yet.
Posted 11/27/2012 11:56 PM (GMT 0)
Susan, they can't "see" the entire small bowel in a SBFT because it's just an x-ray. All it can do is identify places that look inflamed or constricted. You can't see the surface or notice small erosions.
Posted Yesterday 4:50 AM (GMT 0)
My son's doctor told me that the defining difference between Crohn's disease and Ulcerative Colitis is that UC involves only the inner layer of the large intestine whereas Crohn's disease is ALL the layers of the bowel wall. She said that chronic inflamation will show a thickening of the bowel wall which you can see on the x-ray and this is what they were looking for.
Posted Today 11:32 PM (GMT 0)
Good news! Doctor called today with biopsy results. Absolutely no inflammation (even microscopic) in small intestine or ileum. Microscopic inflamation in stomach but she said this appears in 80 percent of people regardless of Crohns or UC. Inflammation in colon is consistent with UC. She said they look for granules in the biopsies that point towards UC or Crohns. So, she is sticking with the UC diagnosis. He was diagnosed with UC last December but the doctor we had then didn't run all the tests. She also is switching him from Pentasa to Asacol. She wants to keep him on the Azathioprine and mesalamine enemas as well. Time will tell.

She prescribed 2 asacol per day (800 mg) total. Does this seem like enough? I know many people on here talk about taking lots of pills a day. My son weighs 66 lbs.
Posted 11/30/2012 12:01 AM (GMT 0)
The dosage of Asacol is not really determined by how much you weigh. It's essentially a topical medication. If he is doing the aza and 5-ASA enemas perhaps this [low] dose of Asacol is all he needs.
Posted 11/30/2012 3:45 AM (GMT 0)
I just picked up his perscription and it is 800 mg/pill. So the dose is higher than I thought since he takes two per day. I'm hoping the asacol will control the UC better and that in a couple months we might be able to back off to 1 enema per day instead of two.
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