just finished my colono.

Sorry you still feel like crap but you must be doing something right if the colon looks better and they are telling you it's mild/moderate. Maybe you are on your way to remission.

remember, the lower areas closer to the rectum take longer to treat ... I am dealing with proctitis up through sigmoid. It takes time and lots of enemas!

somedude, just got back from mine. i was there from 1:30 to 8 pm. my doctor likes to spend as much time with his patients AS HUMANLY POSSIBLE so i didn't even have my colonoscopy until 5 pm.

turns out, i don't have any severe pancolitis with ulcers anymore! but i still have active inflammation in the colon- weirdly my rectum looks great. doctor said the lining looks healable with meds but still wants me to consult a surgeon so i know my options. i'm excited about this since i'm sure surgery will be in my future.

doctor wants to start me on imuran. i haven't tried this but i was on 6mp for 6 months. he said it's different than it so he figures it could work.

there was one thing that was just so annoying though. he kept saying "doing nothing" will get me nowhere. i literally take 13 different supplements/medications a day and he's acting like i'm just letting myself get sick. he knows i take naltrexone and when i brought that up, he said it doesn't count as a medication for UC.

does your doctor want to start you on anything else or just keep doing what you're doing? i know you're still on remicade and some other things, right?

Bad luck, dude.

In one way, it's more annoying to have good (or at least improved) test results while feeling like crap, than it is to have crap test results while feeling like crap. At least when it's the latter it's obvious why you still feel bad, but when it's the former you've got to figure out why you don't feel any better, along with possibly dealing with doctors who aren't as interested anymore.

bananagirl said...
somedude, just got back from mine. i was there from 1:30 to 8 pm. my doctor likes to spend as much time with his patients AS HUMANLY POSSIBLE so i didn't even have my colonoscopy until 5 pm.

turns out, i don't have any severe pancolitis with ulcers anymore! but i still have active inflammation in the colon- weirdly my rectum looks great. doctor said the lining looks healable with meds but still wants me to consult a surgeon so i know my options. i'm excited about this since i'm sure surgery will be in my future.

doctor wants to start me on imuran. i haven't tried this but i was on 6mp for 6 months. he said it's different than it so he figures it could work.

there was one thing that was just so annoying though. he kept saying "doing nothing" will get me nowhere. i literally take 13 different supplements/medications a day and he's acting like i'm just letting myself get sick. he knows i take naltrexone and when i brought that up, he said it doesn't count as a medication for UC.

does your doctor want to start you on anything else or just keep doing what you're doing? i know you're still on remicade and some other things, right?

She just told me to add cortifoam to what I was doing.

Im on remicade, LDN, Diet, supplements....about it.

I am unsure if remicade is helping though....who knows what's helping at this moment.

Conquer UC said...
Just wondering did any of you, especially Joanna since you have been flaring for quite a long time, get 'indefinite for dysplasia' on your biopsy?

I just don't understand how i got this when ive only been flaring since january!!! Unless i didn't fully heal in the first place from my panco flare in 2011..?

Well, she takes biopsies also. I will ask her next time about it.

somedude, i have not tried cortifoam but maybe it'll help. gotta give stuff a shot.

i was reading online and looks like i'll have to get off ldn before i start imuran since the two drugs don't mix well. in my heart, i'll never agree that suppressing a sick person's immune system will lead to any real healing, but logic basically goes out the window when you have this disease.

i asked my doc about MDX1100 and he said he's never heard of it. i hope it can get approved by the FDA since it doesn't suppress the immune system.

Somedude and Joanna,

IMO it's good news that your results have gotten better (even if you don't feel better yet) and that there is less inflammation.

To me, that means the LDN is working! As I mentioned in prior posts, for many it may take as much as 6 months to see the actual symptomatic results of LDN - all the while it continues to heal the damaged and ulcerated colon (which cannot be seen except via colonoscopy) - which is what's happened to both of you. I would suggest staying on LDN for another few months, at least until you hit the 6 month mark.

What do you think?

Therearemiracles,

Have you had a colonoscopy since your 6 month mark to see  if there were any changes?

Somedude said...
I also believe in inflammation markers. Blood tests. They can check if your inflammation decreased or whatever. That's even simpler than a colonoscopy if you want a quick answer.

There's one girl in my support group who mentioned that the blood test don't correlate with the inflammation. I was also told by Mayo that for the severity of my UC, my symptom should be worst! Now that's scary..not being able to judge by how you feel!

Bananagirl,

Did you get tested to make sure your body can metabolize it properly? Prometheus Lab has test out there to help with dosing. This was mentioned in my support group. It appears some doc don't know this and this may be the reason for side effects and no results. prometheuslabs2007.egofactory.com/Resources/PTM/DX06045_Patient_Brochure_PTM_PRC_Approved.pdf

I'm probably right behind you in taking Imuran...just a fyi.. the generic form is likely to cause Pancreatitist, so I would go for the brand name if you can.

Joanna, I am sorry, and i hope the Imuran will stop all this for you.
Keeping my fingers crossed for you.