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biopsy results in: mild/active UC seen

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Posted 6/25/2015 12:00 AM (GMT 0)
I just got off the phone with my (new) GI regarding the biopsy he took about two weeks ago during my scope. he said it confirms colitis at the microscopic level but was clear of everything else he looked for, like cancer.

I asked him to explain more about what this means, how he thinks I should treat the disease and the prognosis moving forward. He'd essentially told me to stay the course after the colonoscopy, as it showed very little inflammation that appeared to be under control.

I currently take Asacol HD (4.8g daily), Rowasa enemas (1x daily), Librax (1-2 daily), vsl #3 (1 capsule daily) and keep clear of dairy and fried foods most of the time.

The GI said that I'm as close to remission as someone in my spot, with my history can be. He said he was very pleased with what he saw based on his expectations, and was anticipating an intensified treatment regiment until he saw that my mucousol lining appeared mostly fine.

I asked the doctor how long he thought I might have to stay this course and if it was ever going to be possible to be medication free/in full remission. He said he would never rule out either, but both are very rare.

I feel like this should all make me happy/hopeful, but it doesn't. I was hoping to be told I was in remission and that didn't happen. I was hoping to taper off meds but it seems that is playing with fire and could lead to a new flare if I really play around.

Does anyone have anything they can add to what my doctor said with regards to the biopsy and my treatment? I'm hoping to feel like I won't always have to plan my life around taking meds/being careful and having a toilet around. Maybe that's just the card I drew, though.

I do count my blessings that it's as mild as it is and hope it stays that way/gets even more mild. I don't want to make anyone going thru real pain or suffering feel bad either. I guess I needed to just get this off my chest with some folks who have been thru this themselves and see what any of you might have to say/think/opine. Any feedback is welcome.
Posted 6/25/2015 12:53 AM (GMT 0)
You must have read enough here to know that people rarely go off Rx meds entirely (or maybe they don't post here). Perhaps your doctor didn't want to use the "remission" word but it sounds like you are there. I don't need a doctor to tell me I'm doing well, my body tells me that. Do you need your doctor to say it?

Perhaps you will begin to feel happier in a few days when you realize you don't have much to worry about. Sometimes it takes time for good news to sink in, and that's what you have, very good news.

Years back I had to have a biopsy for suspected breast cancer. When I got the call saying it was negative I was not immediately happy, so much so that the doctor was a bit annoyed with me (he called personally). But I was a bit annoyed that he wanted credit for me not having cancer so we were even.
Posted 6/25/2015 1:03 AM (GMT 0)
You might want to try adding further supplements one at a time and see if you get even better.
Posted 6/25/2015 1:29 AM (GMT 0)

garylouisville said...
You might want to try adding further supplements one at a time and see if you get even better.

I don't know what could be improved, really. I rarely feel sick unless I eat/drink recklessly and have fully formed BMs like 2-3 times per day (sometimes more if, again, my food intake is silly). By all accounts I'm doing fine. I just wish I could do this without taking maintenance meds and being more in tune with my body every second of every day.

That said, which supplements would you suggest I try?
Posted 6/25/2015 3:08 AM (GMT 0)
I would add various anti-inflammatory foods into your regular meal selections.

If you continue to feel fine, you might be able to cut Lialda dose in half (that is very common for remission/maintenance), and maybe use the rectal meds less frequently.
Posted 6/25/2015 3:54 AM (GMT 0)
Since every person is different and responds to different things the only recommendation I would make is to check out our resources thread at the top of the page and look for something that is attractive to you. Anti-inflammatory foods isn't a bad place to start either and I am very impressed with the resistant starch thing, although I have never done it very seriously myself.
Posted 6/25/2015 5:04 AM (GMT 0)
Hi- I am new here, and am certainly no expert.But I agree we all all different. There is nothing wrong with having hope for remission! I was dx UC in 2005. First flare was 6 mos.I took three different meds. They made me feel even sicker. cry I tried alternative healing, SCD diet and luckily found remission for 2 years. Second flare lasted 2 mos. I went on SCD diet only 2 weeks and I swear it helped me. The meds were not working at all. I also took flax oil and probiotics, tumeric. I had 8 years in remission and took no meds! I even forgot (almost) that I had UC.I just started back with the symptoms and had my 10 year colonoscopy. I am back on meds, and SCD diet. Only a few days in and hoping for the best. Hope you can find what works for you! wink
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