Hi Good Dawg, you will find a current discussion on this under the survey "how often do you get your j-pouch scoped/biopsied?"  Look at the comments.  I left a link there too. Good luck to you.  Sending you a wish for the best outcome.  

It is generally appropriate to carefully rule out colon cancer or UC when someone becomes quietly anemic, even if they haven't seen blood. In the case of someone without a colon it's a foolish response by someone who didn't pay attention to your situation. It is possible to get cancer in the rectal cuff, but it really is rare. Colon cancer is way, way down on the list of possible anemia explanations in your case. NSAIDs are certainly a possibility, as is poor iron absorption. Good luck finding a cause from the list of plausible ones.

Thanks for confirming my thoughts Scott.  I hope they can find what's really bugging me after they confirm, I'm cancer and colitis free. 

Good Dawg, you are more forgiving than I. You've got an actual puzzle to solve. Once I'd learned that I'd hired someone without adequate puzzle-solving skills, I 1) would absolutely not continue to look for the least likely cause, and 2) would seriously consider hiring someone smarter. If you're inclined to look at the bright side, though, going to a GI is a great next step, and the pouchoscopy to look for colon cancer (stupid) will also look for ulceration that might bleed slowly or intermittently (not stupid at all).

Based on the anemias folks here struggle with (and your lack of visible blood), poor iron absorption seems the most likely cause, though, particularly if you are of a gender and age that normally bleeds on an approximately monthly schedule. It takes men much longer than women to get anemic just from poor iron absorption.

On the other hand, you don't need visible blood in order to have GI blood loss. It is called occult bleeding, and it is pretty common (especially if you've been taking NSAIDs). It takes quite a bit of time for your blood counts to come up after long term losses. But, a simple occult blood stool test can rule out or confirm GI bleeding pretty easily. Not difficult and any primary doc can order it (you do it at home and mail it in).

If there is bleeding, then the next step is to determine the cause. J-pouch or rectal cuff cancer is rare, but not unheard of. If you are due for a scope anyway, biopsies can help get a diagnosis or rule out pouch disease. 

I agree that finding a good GI is a worthwhile process.

Jan

Just to be clear, I'm not suggesting that we can know whether there is GI bleeding when no visible blood shows up. When there's visible blood there's always bleeding. When there's no visible blood there's sometimes bleeding. If the bleeding is intermittent, an occult blood test sometimes misses it. All of which is why I thought a pouchoscopy might turn out to be a reasonable choice, as long as we don't think the purpose is cancer hunting or discovering an unexpected colon. And: a fecal occult blood test is indeed incredibly cheap and easy, and if the GI is any good will either order it or (a better choice, IMO) do it on the spot.

I was reading so fast and late for an appointment earlier that didn't pick up on the statement that your current doctor is referring you to a GI (and isn't him/herself a GI).  That probably makes a big difference in knowledge base from which the statement came re/ ruling out UC or colon cancer.  If you are interested, you can read more about the (low) risks of j-pouch dysplasia, the where's and how's of it in the j-pouch, as well as the authors recommended schedule for scoping the j-pouch in the article I mentioned above (and I can link it to here if you'd like.) It's from 2004 and there may be more updated info out there.  This specific information is toward the end of the article.

While there is a possibility of developing cancer in the rectal cuff, I also agree that this sounds like a case of misinformed health practitioners. I mean, I've been there. If I had a nickle for every time I had to explain my situation/anatomy, etc, to a health practitioner, well I'd be far better off financially than I am at present.  For instance, in the ER, I've had staff ask me repeatedly, even after I've explained things, how many times I've emptied by "colostomy bag." *sigh* It's refreshing - almost validating in a way - when you find a doctor who knows what you're talking about. My allergist, for instance, is fantastic and knew all about my issues. Her best friend has Crohn's. I barely had to explain a thing.

Seriously, though, even without visible symptoms, you can still have bleeding somewhere in the GI tract, and if it's high up enough, you may not notice it in your stool. It's a good idea to rule out ALL possibilities. I hope you get to the bottom of it, and that it's an easy fix!

I'm sorry I threw out the test to discover if there's minimal bleeding.  My doctor did give it to me.  I was so convinced though that I'm not bleeding, especially compared to my UC years, I just decided this test isn't worth the effort and trashed it. But I can still arrange to take it again. I might be better off just taking a pouchoscopy though. 

I'd still do the test. If you are anemic it can help narrow the diagnostics. A pouch scope only looks at the pouch, and an occult blood test will reveal any bleeding anywhere in the GI tract. Also, if you had been taking NSAIDs and have since stopped, repeat blood counts are in order in a few months.

Even if the test is negative, it is useful. You don't need to be actively bleeding for it to show positive. Since it is cheap and noninvasive, worth doing.

Jan

You cannot have colon cancer if you do not have a colon!!  Gastric cancer, yes.  Rectal cuff cancer yes. etc. etc. etc.

I agree Jaypea.  I wonder now if I have rectal cancer?   I took a look at the signs of rectal cancer.  Which are:

• Diarrhea
• Constipation
• Not being able to completely empty the bowel
• Change in the size or shape of stools (narrower than usual)
• Bloody stool (either bright red or very dark)

The only sign I have there is diarrhea.  But that doesn't alarm me, since that's a symptom I've always had, thanks to my j pouch. 

And when it comes to rectal cancer's symptoms:

• Pain in the rectum
• Abdominal pain or discomfort
• More frequent gas pains or stomach cramps
• Feeling bloated or full
• Change in appetite
• Unintended weight loss
• Fatigue or tiredness

The only symptom I might qualify for there is having less energy.  It's nothing major though.