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Going off meds - advice needed

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Ulcerative Colitis
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Posted 11/19/2018 5:11 PM (GMT 0)
Obviously, the OP just posted for reaction and hasn't cared to respond.

q
Posted 11/20/2018 2:32 AM (GMT 0)
Well, I was busy today and did not look at the website until now. My mom came into town yesterday and we were out and about today, having a good time.

I did not post to get a reaction. I was simply giving an update for those that requested it last year when I chose to go off the medications.

I also never said that the disease was gone. But, I have been off the medications for almost a year and my pathology report showed improvements (with no signs of colitis) rather than increased inflammation. I think that's very good news! My GI said that he has patients that do well without medications and some that do not. He is supportive of my approach.
Posted 11/20/2018 5:05 AM (GMT 0)
I'm happy being off meds. I had many side effects from the meds. I have been taking Qing Dai as needed. It's a powerful natural anti inflammatory and seems to be helping me. If I have any symptoms at all I take one of those. I have noticed that fatigue does seem to be a symptom of UC. I have noticed I always feel very sluggish before a flare. I listen to my body more now and try to not take anything for granted and any sign of a flare I take the Qing Dai.

I started taking Qing Dai on 4/9/2018 with immediate results. This was after a flare that lasted over two years. There is no cure for UC obviously but I feel so much better! I have my Gastro's full support. :O)
Posted 11/20/2018 5:29 AM (GMT 0)

tjf43 said...
Well, I was busy today and did not look at the website until now. My mom came into town yesterday and we were out and about today, having a good time.

I did not post to get a reaction. I was simply giving an update for those that requested it last year when I chose to go off the medications.

I also never said that the disease was gone. But, I have been off the medications for almost a year and my pathology report showed improvements (with no signs of colitis) rather than increased inflammation. I think that's very good news! My GI said that he has patients that do well without medications and some that do not. He is supportive of my approach.

You aren't the Original Poster...that was my statement.

You have lymphocytic colitis and not UC?
q
Posted 11/20/2018 5:13 PM (GMT 0)
OK. That makes more sense!

Two years ago the pathology report indicated lymphocytic colitis while prior colonoscopy results (2007&2011) indicated ulcerative colitis. This year, there was no signs of colitis. My GI said that they are all closely related and he still has my diagnosis as UC.
Posted 11/20/2018 6:25 PM (GMT 0)
Just know that UC is a lifelong illness, defined by periods of remissions and periods of flares and spontaneous remissions do happen. Consider yourself lucky that you've been able to sustain this long without meds. However, past behavior does not dictate future behaviour. You might eventually flare badly and need medications thereafter. The studies say those of us who remain compliant with out medications have the longest possible remissions, least frequent and mildest flares.

It's a bit more unpredictable without meds, you might flare badly and sooner than you would've otherwise with medication compliance. You might flare really, really badly and require much stronger medications henceforth than you would've needed otherwise.
Posted 11/20/2018 7:09 PM (GMT 0)
Yes, I am aware that you feel this way. I did not take this decision lightly and obviously feel differently than you do about how to approach my UC. Again, I was just giving an update for those that were interested.
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