Update

Spooky,

They wanted to do a camera endoscopy on me back in 2008, prior to doing the CT and later the MRI Enterography. I rejected it. The reason why is that in 2008 when this was under discussion, I saw the thing they make you swallow, a sample of which my father got from a friend of his who is an investor in the company that makes them. The thing looked bigger than the biggest elephant pill I have seen and I said no way will I swallow that. On top of that, my GI warned me that there is a risk that if you have adhesions or scar tissue (and remember, I have a narrowed bowel just above the pouch inlet), that the camera pill could get hung up and then emergency surgery becomes necessary to remove it if you cannot pass it and crap it out.

Since 2008, I understand that they have made the camera pill smaller than it was back then.

Ask your GI about ALL of the risks of this procedure.

I was told that the camera endoscopy is the gold standard, the MRI Enterography the silver and the Prometheus Test the bronze (my GI's words!!!!!!!) in determining whether or not Crohn's of some kind exists in the ileum.

By the ways they did find inflammation in my ileum above the pouch, which they think is being caused by fecal stasis from the narrowed bowel. I have NEVER had bleeding like you. I still think you may have an ulcer and the camera may find it, but speak to your GI about all the risks and good luck with getting coverage.

I've had bleeding in the past that lasted for quite a while and then just stopped. But yours has been going on for 5 months and that seems sorta dire, doesn't it?

It does seem the only thing that they can do right now is the camera because nothing else is showing anything and the medications you're taking aren't helping. Have you been able to get in to see the psychiatrist yet?

I hope someone gets to the 'bottom' of this very soon. I'm so sorry you're continuing to suffer.

kathy

Well, the fact that my hemoglobin is dropping means something is going on. I don't bleed every day and in fact, I can go for several weeks without any visible bleeding, but clearly its ongoing and we need to find the source of this.

The earliest I can see the health psychiatrist is April 22, so that's not proving to be very helpful either.

The worst part is simply not knowing what is going on or if it's going to get worse.

Otherwise, the pouch itself still continues to function extremely well. The problem is likely somewhere else in the digestive track. At least the pouch is doing well.

quote:

my hemoglobin is dropping

This is not good. I don't understand insurance coverage issues in Canada, and why such a situation would not be considered dire, or at least something warranting something more than routine testing. It really sounds like you need to have the testing done soon. I can understand if the camera endoscopy was suggested, as it was in my case, as essentially a fishing expedition for inflammation further up the ileum when we had seen some on scope near the pouch but had no evidence of any other issue. I never found out whether my private health insurance would cover it or not as I rejected it for the reasons stated above. Had I had the issues you were having, I probably would not have rejected the proposal.

In your case there is bleeding, and the bleeding is causing palpable consequences on your hemoglobin levels. This has to be argued in order to get the requisite coverage. Not sure what more would be needed. Good luck.

Looks like your GI is on top of things and when they know they have a hurdle to deal with, most docs know how to manage it. It is not like they have to lie about your condition, but have to get the criteria to get you over the bureaucratic bar.

And if you can't get into a shrink to help you cope, be sure to keep coming here so you can unload on friends who understand!

Jan

This GI is great. He's willing to work around the bureaucratic tape to try to get this done. My hemoglobin was 139 in December, 121 in January and now 113 (which incidentally is lower than it was after my step 3). My annual bloodwork from the past few years has had it between 130-145 range, so this is demonstrably low for me. But he did tell me today that it still isn't low enough (i.e. transfusion levels) to make this an urgent matter. Anyway, my hemoglobin at one point was 52 due to UC and I did require 2 transfusions, we are a ways off from that thankgoodness. But I don't like the steady decline and I hate thinking "how low can it go?"

I'm sure I'll be venting here!

Yes, I agree, the steady decline is concerning, but far from urgent. Transfusion would not be indicated until you were in the 70-80 range (most of us in the US have reference ranges of 13-15 as normal, and 7-8 as the transfusion range- just a different reference point).

Anyway, your levels of anemia are considered mild at this point, so repeated lab studies can show the trend. I would expect that you'd need to drop below 90-95 before it would be considered more urgent.

The good news is that with a gradual drop like that, it generally is well tolerated and the body compensates well. So, it is safe to wait it out.

Jan