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When do you know when to stop procedures?

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Ulcerative Colitis
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Posted 10/5/2015 10:34 AM (GMT 0)
I have been in a flare since the end of July; the usual blood, mucus, increased bowel movements to about 5 a day and generally feeling lethargic with a Fecal calprotectin of 600.

Since then I have increased my Pentasa to 4.5g a day and added Asacol suppositories of 500g x2 a day for 3 weeks (now 1 at night).

The symptoms went away after about 6 weeks (in mid September); right now I have 2 or 3 BM's a day, no blood or mucus and the stools are well formed with a Fecal calprotectin of 300. So I look to be on the road to recovery (God willing) even though I have some inflammation according to the FCP which is why I am continuing on the increased medication.

How do you people know when to stop investigating and to get on with your lives?

My GI has advised the following:

1. Keep checking FCP until the score is below 150 (which makes me anxious)
2. Do a Flexible Sig this month for completeness (I had a Colonoscopy a year ago)

Also, when do I start lowering doses? I feel like I am hostage to the Fecal Calprotectin rather than my symptoms. The anxiety is driving IBS too which then starts the cycle.

Any help would be much appreciated.
Posted 10/5/2015 12:15 PM (GMT 0)
Don't take this the wrong way, but I think you have more of a problem with anxiety than UC at the moment. You shouldn't be feeling like a hostage to a stool test if your symptoms are good. I'm not intending to guilt-trip but if I was in your position, symptom-wise, I wouldn't give a crap what my FC was to be quite honest. (But it's 1338, if you're interested <_<.)

As far as lowering doses is concerned, mesalazine is a safe drug so there's no rush. You could stay on those doses indefinitely and it wouldn't harm you. I can understand why people would want to cut back on the rectal meds, but I can't see much point in dropping from 4g to 2g oral mesalazine - maybe somebody else can explain the point of it.
Posted 10/5/2015 12:19 PM (GMT 0)
Ditto
Posted 10/5/2015 2:02 PM (GMT 0)
Symptoms are the most important, in my opinion, ignore the rest. FCP isn't 100 percent reliable, so don't let it bother you.
Posted 10/5/2015 4:10 PM (GMT 0)
Like me, I'm letting myself stress a bit too much as well knowing that my CD is in remission with Humira but still having multiple BM's a day rather than being my normal once a day self is frustrating me and making my IBS continue to be active (for me my IBS is stress driven) try mediation for only 3 minutes a day (you can find 3 minute ones on youtube) or if you know certain foods bug your IBS then cut them out completely and see if any of that helps, you have to give the meditation and if necessary, the diet change some time before you'd likely see results and believe me, I know how hard it is to be patient. I agree with the rest, don't let number play on your mind too much cuz that is likely adding to your vicious circle trying to get your gut to feel better. I know if you're flaring with your UC with still having some inflammation can also make symptoms worse but you have to try and be a bit more relaxed so hopefully symptoms of both UC and IBS that you're dealing with will settle down some or maybe a lot.
Posted 10/5/2015 4:50 PM (GMT 0)
So let me here you right, if my symptoms gone then continue on meds but stop checking FCP and don't do sigmoidoscopy?
Posted 10/5/2015 5:02 PM (GMT 0)
You should keep taking your meds for sure even if symptoms are gone, nothing wrong with your GI's 2 suggestions IMO, I would follow them, just don't let the numbers stress you out if they're not where you and your GI want them to be...many who are still flaring and have inflammation still do okay symptom wise, if you're doing well symptom wise that's great because that's the biggest hurdle to get over.
Posted 10/7/2015 2:33 AM (GMT 0)
I've had UC for 15 years, including one hospitalization. I've had three different GIs, two of which were very well-known doctors at the biggest teaching hospitals in Chicago, and not once have I been given a fecal calprotection test. Some doctors use it and some don't. it can't be that important if it's not standard.

Don't worry about the score and just focus on symptoms. The flex sig is probably a good idea to see how much inflammation you still have.
Posted 10/7/2015 4:38 PM (GMT 0)
I don't think it is much of a practice at all in the States but outside the country they seem to rely more on CRP's and FCP's. It can be a tool in the arsenal but they are not always accurate and shouldn't be relied on as a sole source. I had to ask my general practitioner to do a CRP test on me.
Posted 10/7/2015 5:52 PM (GMT 0)
I agree with several comments. To me being able to live your life without being held down by the disease is the most important thing. If I can work, exercise, and have fun with very little disruption caused by the UC that's all that counts to me. It's not like there is a cure, its just about managing the disease as best you can.
Posted 10/9/2015 5:04 PM (GMT 0)
I have started bleeding again after all that, looks like stress seems to be the ONLY consistent theme in me playing up.
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