Colonoscopy results question

I suppose this answers my question. Posting in case someone else has the same question at a later date and wonders ;-)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4014050/

Forget the medication-free business. Your UC has gotten more severe now, just put that thought in the rear view mirror.

DBwithUC said...
what answer did you take? it seemed to me it was a definitional mess.

@ DB, I actually took what quincy mentioned from it.....inflammation is inflammation and as such, poses a risk of either becoming more intense or leading to colon cancer----and my true aim should be inflammation free, as opposed to "mild" ......any form of inflammation has the potential to spark into something worse.

@ quincy, yeah....I am ticked to find out that all of these little details like probiotics and ginger tea combined with the meds haven't been enough to eradicate that inflammation.

It makes me wonder if I've ALWAYS had it......even during the 8 years I thought I was disease-free?

Then my mind goes to, well if that's the case......maybe it never would progress? and maybe a mild version of inflammation CAN be controlled with dietary and behavioral changes?

It's such a guessing game. And usually with choices one seems much better than the other, but in this case with "the butt ruling"......there isn't a clear better option.

If combatting inflammation is the goal, then stepping up into something that could kill off all existing inflammation almost seems wise......at least short term? IDK.

@ iPoop, that's the plan.

For now and into the foreseeable future I guess I'll just stick with what I'm doing and see her when the biopsy results are in. Maybe that'll shed more light? thanks you guys .

Thanks, Rosiedays......that article was educational for me, too. It just shows such a variety of thoughts on underlying inflammation and also highlights so many perspectives on what "remission" really is.....or isn't.

I'll celebrate with you ! . taking the pups on a nice sunny walk sounds perfect.....and extra vitamin D is always a plus, too.

Hi quincy,

Right now things are shifting in a very unusually for me. I haven't had any mucus at all in over 3 weeks (after having it with every BM for like 19 months+) and I have only seen blood two times in two weeks.

What I have been experiencing is 3-4 day stretches of constipation and some weird pains in my ab area (under belly button and to the right of it). I haven't ever had any pain with this disease so far, this is new.

And unfortunately my doc said she couldn't get into the ileum with the scope....she had said that was the plan.

I am just sort of keeping an eye on things because maybe the pain is associated with being "bound up"? I am drinking tons of water and using benefiber to get things moving....because when I finally DO go, it's like 4-5 times a day.

Aside from those two days with a little blood, I guess I'm in clinical remission? not endoscopic remission, but still not too bad a place at the moment.

I am trying very hard to stop believing there is a miracle out there for me.....but it's almost as if every cell in my body revolts when I begin thinking I have no control ;-)

Hey MarjieKay -- Just wanted to say that I've had those same weird pains in the same area. It happens periodically -- never have figured out what it is. Had a colonoscopy the day after an episode and they didn't find anything specific in that area. I wasn't actively flaring at the time, but it was 3-4 months after my initial diagnosis, and the dr. said I was about 90% healed. (That didn't last long, tho). Anyway, have the pains every now and then but not since I started Entyvio. Never did figure out if it was from my stomach or colon.

Thanks you guys, your words are reassuring.

@IPoop, you have an attitude that doesn't add extra stress onto "the unknown" and I am flirting with surrender. Never has been my strong suit.....but life is always giving one another chance to try try again until you get things figured out, I guess?

@Flowersgirl,this started around a month ago .....maybe when I added my new probiotics??? I wonder if it's actually a sign I have a little spill over in areas where there shouldn't be? were you taking probiotics at the time, too?

Plus I am now drinking daily water and milk kefir (that I am making here at home). I just started that a week ago though. But maybe I shouldn't be consuming so many bugs if my immune system is having difficulty understanding bugs? hmmmm.....

@quincy, I have a feeling this IS caused by inflammation because I had a random evening poo last night and when I looked there was nothing but a big brown pile of what looked like ribbons in the toilet. Or a very long tapeworm. The flattest, thinnest poop I've ever seen.

I promised myself to stop photographing feces. (because I always chickened out showing my doctor anyway) or I'd have snapped a photo. It must be my colon is mad about the colonoscopy, too?

I know you're right. I have just never had anything in my life that I haven't been able to fix before. And I have created many a mess in my day and have lots of experience "righting the ship". This is the first time that, despite extraordinary efforts on my part.....things seem to be progressing in the wrong direction.

But I do need to celebrate what IS good and there is plenty that could be worse. I appreciate you guys being here and sharing your wisdom and experience. I really do.

Yeah, it seems I need to reorient my standards ....90% clear isn't too shabby really.

May I ask, KK, during this remission were you taking remicade at the time, and/or other maintenance drugs? I assume so since your start date is 2015.

This is another area I need to adjust my thinking in. I used to think remission as only being possible with 100% inflammation free and zero meds. That may be asking too much with this disease.....

MarjieKay said...
Yeah, it seems I need to reorient my standards ....90% clear isn't too shabby really.

May I ask, KK, during this remission were you taking remicade at the time, and/or other maintenance drugs? I assume so since your start date is 2015.

This is another area I need to adjust my thinking in. I used to think remission as only being possible with 100% inflammation free and zero meds. That may be asking too much with this disease.....

Seems like most of us hope for remission with meds. Med free remission was an impossibility for me. Some people have had luck with diet, supplements and probiotics, but it seems like the majority of the long-term members, require rx medication. I do not know if that is because the people who did well with diet and supplements took off due to being in remission, or if it's because the people who continue to post are the ones who can't get things controlled, but drug-free remission, in my eyes, is a total farce. Then there are the people who do it, and they will tell you the opposite & i hope you can be one of them, but it sounds like right now is not the time. Med free is not an approach, it's a gamble. Then again, nothing works for everyone so there are no guarantees. Even if you're extra diligent and over-medicated, it doesn't mean you will stay in remission forever. 90% is fantastic, can you increase your rectal or oral mesalamine to get things to 100%?

Ok, I hadn't even thought about adding a second butt med !

And last month the pharmacy accidentally gave me a months worth of cortenemas (my docs office was calling in a new rx for mesalamine). They didn't ask for it back when they corrected and gave me the box of melamine enemas, so I have them both here already.

Is this something I need to approve with my GI first, or since she has approved them before, go ahead and add it on?

I think I am maxed at the mesalamine only approach, NSSG, because she was doing some math at my after-scope consult and said I was taking a total of 6grams (between oral & rectal) and told me to stay there for now.

I see her again when the biopsies come in in 2-3 weeks......

Thanks you guys.....I do need my perspective to be tweaked sometimes. I can be kind of a rigid thinker.

Haha the day TroubledTurds and I actually agree on something I will go out and buy a lottery ticket.

Some of us may believe we are in control, until UC butts its head in unexpectedly and tells us otherwise. I no more control my UC than I control the weather. And much like the weather unexpected storms can pop up with UC and weather, more like crapstorms or crapnados with UC. I might forecast my UC with the proper meds and predict it to act in a certain way but that's far from being foolproof, much like weather forecasts are. If you have an easily controlled variant of UC, then I believe any one of us here will trade with you in a day, if that were at all possible I think most of us can say we believed we were in control and then UC blind-sided us, or hit us below the belt when we least expected it (I was other there in remission-land, enjoying my life, nearly forgot I had UC and then *wham* flaresville). Unpredictable prognosis is up there in most definitions of UC.

iPoop said...
more like crapstorms or crapnados with UC.

darn, John, I love your analogies. Crapnados is my fave new term! Thank you!

I agree with you about the loss of control, btw. UC has pretty much ruled my life for the last year and I expect it to continue.