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Confusing test results - help please

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Ulcerative Colitis
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Posted 5/24/2013 6:47 PM (GMT 0)
So I have basically been in various states of flaring since January. Had a couple mini-remissions thanks to cortenema but symptoms always return shortly after weaning off. Saw my GI last week to come up with a plan to address this, and we ran some stool tests. All came back negative for any pathogens.

They also came back negative for fecal leukocytes (white blood cells), which he says means a LACK of inflammation or active colitis. I am just shocked by this, because my symptoms do not match up with the results. He is suggesting a flex sig to take a look but I have horrible insurance and would have to pay the whole bill out of pocket, so I'm not too keen on that, I don't feel it would tell us anything new.

He says it could be IBS in addition to the UC, but I don't really buy that.

I still think I should start on the sulfasalazine, I think I obviously have active inflammation, but I am very surprised by the test results.

Thoughts???

Posted 5/24/2013 7:04 PM (GMT 0)
Well, it doesn't really surprise me that you are in remission while on a rectal steroid and then flare when you ween off of it, because you are not taking any other uc medications as a maintenance med (maybe LDN but that isn't really approved for it). I mean the steroid is meant to be temporary and then you should rely on a maintenance med which could be one or more of the following ASA5 (oral or rectal meslamine) or immunosurpressants (Imuran or 6mp), a biologic (remicade or humira). It says in your sig that you discontinued Lialda; had a bad reaction to it then you should try something else. Perhaps you have a meslamine-intolerance and you should try something you can tolerate.

That said, uc symptoms and the amount of inflammation present don't always equal out. Take me for example, I have weeks at a time where I poop 1-2times a day, other weeks 3-4 a day. My GI said my most recent flexible endoscope showed severe-to-moderate inflammation as far as he could see with his scope. He was pretty worried as it looked pretty darn bad in there. He said I need to consider Remicade soon to get that inflammation in check... He said my daily uc symptoms don't match up to what he saw in there. So for now we are going to wait a bit and recheck in early June.
Posted 5/24/2013 7:12 PM (GMT 0)
I know I should be on a maintenance med (that's what the boswellia and turmeric are for). I tried lialda and rectal mesalamine and flared despite both of those. That's why I went to the GI, and we were discussing starting either sulfasalazine or possibly Imuran.

However, now my GI says the lack of white blood cells means no colitis activity, so I have no idea what I'm supposed to do now.
Posted 5/24/2013 7:25 PM (GMT 0)
Well, if I were you, I would get on either the sulfasalazine or the Imuran as a maintenance medication. Because guess what, even if there isn't any active disease (and the blood test isn't conclusive which is why your dr wanted the scope) you neeeeed to be on a maintenance med; your uc isn't gone. Your uc will flare up again and not boswellia or turmeric is going to matter much. Sulfa is pretty cheap, I think $100 a month maybe less if you get it from Canada or something. I am on 6mp which is also around $100 a month (Imuran might be about the same) but these require regular blood monitoring which can be pricey which should be factored into your decision.

As far as the scope your dr wants, if you can't afford it, and they don't offer a way to do it cheaper for you considering your financial status, then I would forgo it and just go for a maintenance med. As the test just confirms your GIs suspicion it isn't really necessary I think.
Posted 5/24/2013 7:34 PM (GMT 0)
if you were unable to tolerate the Lialda or 5-ASA enema then it seems sulfazine will be a likely trouble maker too, since it breaks down into 5-ASA in the gut. If your experience was that 1 Lialda and half a 5-ASA enema just didn't help you, that's a different story.

The generic enemas aren't all the same - i had a bad reaction to one brand but did fine on another, and no problem with the name brand either.

1 Lialda hardly seems like a therapeutic dose.

I have no thoughts on the stool testing. The fecal calprotectin test is an excellent predictor of active inflammation but I doubt that is the test you had since it is quite pricey.
Posted 5/24/2013 7:52 PM (GMT 0)
So, what are your current symptoms?
Posted 5/24/2013 7:59 PM (GMT 0)
Current symptoms are occasional tenesmus, 1-3 bms, mostly formed but sometimes loose, mucus. No blood.

I'm thinking that my UC was flaring, but the cortenemas brought the inflammation down and that's why the test didn't find any inflammation...so I should still go ahead and get on a new maintenance med.
Posted 5/24/2013 8:08 PM (GMT 0)
Isn't the LDN already your maint med?

Is the formed stool thin?
Posted 5/24/2013 8:13 PM (GMT 0)
I'm not on the LDN anymore, I need to edit my signature. I don't think it was doing anything for me.

The formed stool is not particularly thin. When I had to collect the sample for testing, It was all well-formed, no blood, but covered in mucus. That was on day 10 of cortenema use, my symptoms are basically under control on the cortenema but I know as soon as I stop they'll come back so I need to try a new maintenance med.
Posted 5/24/2013 8:34 PM (GMT 0)
Sulfasalazine just sounds like a potentially bad fit with your history....But only one way to see. Maybe ie will be great.

What about uceris?
Posted 5/25/2013 12:26 AM (GMT 0)
Are you sure your stool wasn't just covered in enema? If I have done an enema the night before the next day my stool is covered in it.
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