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5 replies

Ok... so what's the next step?

SpookySpookyMember
This post is part venting/part question.

I had my takedown 5 years ago. Except for 1 bout of pouchitis in the first 11 months, I was doing exceptionally well - even running 5k in 2011. I had occasional bleeding from irritation, but I was feeling great and finally thinking all of this was behind me.

Then starting around late October/early November, I started experiencing intermittent dark red/maroon stools. I ended up in the ER over the Christmas holidays because I had heavy bleeding for an entire day. I was prescribed a course of cipro/flagyl with no change. I've had 2 scopes which show nothing, and now a recent MRI enterography (2.5 weeks ago) really didn't show any issues. My GI wanted to take a "wait and see" approach, but felt that I should be having my hemoglobin checked regularly.

Well, my GP did a blood draw on Saturday. My hemoglobin is 113 and dropping. Below 120 is anemia, so I'm now anemic. I was 139 in December and 123 in January. I've been advised to triple dose my iron, but the source of the bleeding has not yet been identified. I have another message into my GI with the new numbers and I'm just waiting now to see what he wants to do with me.

But considering that 2 scopes and an MRI showed nothing, what would be the next step? I am feeling emotionally drained - I'm physically tired and unfortunately my anxiety has kicked up again, which isn't helping matters (I've asked for referral to a psychiatrist who deals with health related counseling, however the waiting list is somewhat long and I don't know when I'll be able to get an appointment). I'm also quite discouraged that I seem to have had a setback after doing well for such a long time.

Thoughts? Suggestions?
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Jan DollarJan DollarModerator, RN, retired
Does the MRI enterography image the entire GI tract? If so, this test is obviously not telling the full story. Obvious, because it is obvious you are bleeding from the GI tract, not just having iron absorption issues. My thinking is there is one or more bleeding ulcers in there somewhere. Something small that could hide in a fold or something.

If you have had both an upper and lower endoscopy without finding the source of this bleeding, I would think that somewhere in the unreachable section of the ileum is the source. Since the MRI was unhelpful, I think the next best thing would be a camera pill endoscopy. If you've ever had issues with obstructions though, it could be a risky proposition, as the pill could become stuck, requiring surgical removal.

But, I can't think of another way to figure this out, other than assuming it is Crohn's and treating it as such. If by any chance you are taking any NSAIDs, you need to stop immediately.

Jan Smiler
SpookySpookyMember
Thanks, Jan. I am not currently taking any NSAIDs on a regular basis. I occasionally take Advil for menstrual cramps but that's it.

I am not sure specifically what the MRI enterography images--it at least shows the entire ileum, I believe, but my GI did mention the possibility of a small ulcer that can go undetected.

I've had blockages in the past (none with the j-pouch, however) so I guess it would be up to the GI if camera endoscopy is feasible.

Regardless, I'm clearly bleeding - a "slow bleed" as my GP called it, and we need to find the source sooner rather than later.
V vstRNMember
I agree, you need an endoscopy.

I recently experienced a slow bleed. I became so severely anemic that I was in the range for a blood transfusion (decided to go with a ton of iron infusions instead). It turned out to be ulcers going around just the inside of my stoma from the old stoma site - I guess a point of weakness (I'm currently diverted about to undergo a pouch advancement with mucosectomy). All is fixed now, but it really sounds like you are bleeding somewhere and need to take care of it asap. GOOD LUCK!

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