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Interesting (IMO) things from my second opinion

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Ulcerative Colitis
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Posted 1/26/2010 8:30 PM (GMT 0)
I had my second opinion today. I found out a couple of things some of you may find interesting and I have two questions.

First, this doctor did not hold the Prometheus blood test in near as high regard as my GI doc I see regularly. The doctor I saw today basically said he really wouldn't base anything at all on this blood test. I had called Prometheus labs last week and they told me the only two reasons I would have such a high Anti-Cbir antibody would be 1) a bacterial infection, or 2) I have Crohn's. The doctor told me today this was not true at all, there could be other reasons. He told me the box at the top of the results page that makes a UC vs. CD determination would probably soon be removed and the blood test would simply report the seven values and the GI would evaluate them to see if he can determine something himself by putting the data together.

Second, my regular GI wants me to stop the Rowasa and stay at 4,800mg of Asacol and possibly start 6mp. The doc today wants me to taper to 3200-4000 Asacol and stay at nightly Rowasa!

Third, he looked at the pictures my GI had taken during my colonoscopy back on 11.2.9 and noticed the cecum was inflamed. We went to his office so he could view the pathology report, and saw that the inflammation was consistent with colitis. (Not sure what that means, I thought "colitis" meant inflammation in the colon.) Anyway: I had seen my regular doctor five or six times since my colonoscopy, and this was the first I had heard of this cecal inflammation!

OK, here are my questions:

1) He seemed perplexed by the cecum involvement and said he had never seen that in a UC patient. I did a quick Google search and found a couple of studies that had been done where lots of people with proctitis/proctosigmoiditis/left sided UC also had what was called a cecal patch. One found 75% (14 out of 20) had a cecal patch. Why did he not mention this? Was that because my patch was consistent with colitis, as he said, and the people in these studies just have normal inflammation in the cecum?

2) Are people (like me) with a cecal patch at risk for "backwash ileitis," since they have adjacent inflammation to the ileum? I hope not, I want this thing confined to the colon if at all possible!

Thanks for reading.
Posted 1/26/2010 9:48 PM (GMT 0)
Hi...we've discussed this often on the forum.

You should probably be on another 5ASA oral med such as Pentasa which disburses a bit higher in the ileum.

There is a form of UC which you seem to have...good you're on both oral/rectal 5ASA.

You're not a candidate for backwash ileitis since that happens with pancolitis.

GIs as well as all professions have different schools of thoughts.

Colitis is a loose term for UC....but you should clarify with your doc as to what it says.

Do you have a copy of your c-scope? what does the pathology report state regarding the cecal patch?

quincy
Posted 1/26/2010 11:43 PM (GMT 0)
Doesn't look like the path report even mentions cecal inflammation: OK I see it now (bold edit)

severe Ulcerative proctosigmoiditis with multiple small exudate covered erosions, contact bleeding, loss of fine vascular pattern and severe erythema and edema. Sharp line of demarcation between the abnormal distal mucosa and the more normal proximal mucosa at the 25cm. Pathology: (ascending) mild active chronic colitis, neg for dyplasia/neoplasia, (rectum) glandular architectural disarray, mild glandular loss, cryptitis, crypt abscess formation. Consistent with ulcerative colitis, neg for dyplasia/neoplasia.


Well...this is under "Findings" "Colonic mucosa proximal to 25cm was completely normal."

Hmm...That's odd^

Overall, I'm still happy with the visit since he dismissed the blood test that showed Crohn's. He said he would say 1-2% chance of Crohn's colitis. This was before he saw the cecal inflammation, but from what I see, that looks common for a left-sided UC'er.


PS
Quincy-he also agreed with you, contra my current GI-he expects me to still see blood at this point due to the severity of my disease.
Posted 1/27/2010 8:56 AM (GMT 0)
Hi...I'm now confused now because it states that the ascending colon has mild active colitis, it doesn't mention the cecum. But it then says that the proximal colon is clear to the 25cm mark (measuring including the rectum and upward). Odd indeed.

It's not common for distal colitis to have cecum involvement. I wouldn't call your UC left-sided, however.

When do you see the GI next?

quincy
Posted 1/27/2010 1:05 PM (GMT 0)
OK...I just called my doctor's nurse and discussed this with her. She said the inflammation in the ascending colon was just a normal amount of inflammation that even a healthy person could have in their colons. She said it wasn't really an affect from the UC disease itself. The inflammation was not visible to the naked eye, but showed up on a biopsy.


Does this make sense?



Still not sure why the cecum isn't mentioned though.



Also, did you mean to say it's not uncommon to have cecum involvement?
Posted 1/27/2010 4:42 PM (GMT 0)
OK, here is how the path report differentiated the rectal samples and the ascending samples:


Microscopic Interpretation:



Ascending colon, biopsy:

Mild active chronic colitis

Negative for dyplasia/neodyplasia



Rectum, biopsy:

Glandular architectural disarray, mild glandular loss, cryptitis, crypt abscess formation associated with mixed inflammation of the lamina propria consistent with ulcerative colitis Negative for dysplasia/neo dysplasia(see comment)



Comment:

The above changes are identified on microscopy, and the changes in the rectum are much more pronounced than the identified in the ascending colon, in a patient with a well established history of ulcerative colitis, the current findings are consistent with active ulcerative colitis. If this represents a new diagnosis, correlation with endoscopic findings and clinical history would be essential before rendering this specific diagnosis. In ulcerative colitis the lesions of the large intestine are continuous without mucosal spaing. Colonic surveillance may be prudent.



I guess that's why it didn't mention the cecal patch...it wasn't biopsied. Hopefully the inflammation from the ascending colon is what the GI was referring to when he still wanted me on Asacol in addition to the Rowasa. He said I had other spots of inflammation in my colon that are normal without colitis, but the Asacol would be beneficial with these areas. That would also explain the GI saying areas proximal to 25cm were competley normal...I guess?



I may be reading to much into it, but he took a picture time stamped a few seconds after the one showing my cecal patch. In this pic, there is a small amount of redness at the center, but is yellow and 'good looking' for about 90% of the area in that frame. Maybe that is where he got those 4 ascending biopsies that were 2mm at greatest dimension.
Posted 1/27/2010 5:16 PM (GMT 0)
Goodness Levi! You sound as confused about what's going on with you as I am with my intestines! LOL..... I think these diseases often start out as one thing and can evolve into something else. Personally, while the blood tests can be non-specific but I think the fact that they are positive means something is going on, but your other tests do confirm that!
The pediatric GI folks use them quite a bit to predict progression of the disease, outcome/potential success and need for surgery, so they are just quackery. I think a lot of docs don't understand immunology or how to interpret the results, so they just dismiss them. Just my opinion. However, with that said, I have read that some of these tests can be positive with other non-GI auto-immune diseases such as Bechet's disease in the case of the ASCA antibody. I just hope they get you feeling better! My doc recently switched me to Lialda even though my latest scope and biopsy results weren't too bad. Two weeks before the CT scan showed quite a bit of inflammation, so go figure!!! Good luck to you Levi.
Posted 1/28/2010 8:39 AM (GMT 0)
Levi....it states the ascending has "mild ACTIVE CHRONIC colitis"....so not as a "normal" person would have...there's obviously something going on and more than once, twice or whatever. Plus, it's active at the time, so I can't see that it wasn't visible according to your GI.

It also states there are obvious changes in the cellular structuring in the ascending colon, hence the word chronic, but not as obvious or marked as in the rectum. Makes sense since UC starts at the rectum and is difficult to control at times. Were you always on rectal meds?

Does it state on the report how many biopsies were done? I would assume the cecum would be done anyway since it is the last part of the colon....just maybe not stated.

I think you have more questions eventually, and the pathologist does have it known that you have UC. CD can look like UC in early stages....I guess if you do have eventual changes, your diagnosis might change.

But, regardless, the meds you're on will help.

Were you just put on Asacol recently?


You are definitely an interesting case.

quincy
Posted 1/29/2010 12:00 AM (GMT 0)
Thanks for the responses.

I've been on Asacol HD for two months, Asacol regular one month prior to that (pharmacy error) for one month. Both started after the colonoscopy though. Rectal meds two months.

He took six rectal biopsies greatest 3mm and four ascending, greatest 2mm in size.

I guess I need to accept the fact that I have Crohn's colitis, move on and deal with it.

Since, based on my Prometheus test and the rectal involvement, sharp demarcation etc., if I have CD, it appears to be CD with UC-like symptoms. This is basically what my GI wrote in his write-up after my visit Tuesday. He also wrote something to the affect "CD following pattern of rectosigmoiditis."

So...of course you know I have another question :)

Do people in this situation usually face the Crohn's symptoms most UC'ers don't such as fistulas, strictures, etc?

Also, which forum do I belong on now?
Posted 1/29/2010 8:25 AM (GMT 0)
Hi...you should frequent both forums....the same meds can work for both UC and CD.

It seems that CDers suffer from fistulas and strictures more than UCers based on the fact of how deep in the colon wall CD goes compared to UC.

The fistulas seems to be CD related....I havce a friend who has fistulising Crohn's, a specific form of it, but not all CDers get fistulas or strictures, etc.

I would suggest you continue your meds but maybe see of a steroid retention enema of either foam or liquid can be mixed into your routine.
There are also other 5ASA meds that might work better for you as well....worth the trial methinks if the Asacol isn't doing what it should.

Are you seeing any Asacol casings in the toilet?

You might be a good candidate for Remicade if it doesn't get under control, but you're still "early" in the treatment game.

I think doing lots of research regarding types of CD, sites of CD, symptoms and treatment meds is in your best interest. If the doc says CD, it probably is.

One thing interesting, I find it odd that doc didn't take any biopsies throughout your whole colon, unless he did and it was "unremarkable".

Keep us updated as to how you're doing.

quincy
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