Got a 2nd opionion... now I dont know what to do

So, I was diagnosed with UC 18 years ago. The entire colon is affected. Took Asacol for many years and switched to Lialda about 5 years ago (3 pills at night... I think 2.3g is the dosage of each pill). I have mild UC but chronic... Ive had a colonoscopy every 1-2 years and I have yet to get a clean bill of health - there is always inflammation. Up until the last 2 or 3 years, I never took the disease seriously and never took my meds as prescribed (would only take it if I remembered or if I become ill).

After my last bad colonoscopy, I got scared and Im finally taking things more seriously. I decided to see another GI just to have a fresh set of eyes look at my medical records. This doctor told me he would up my Lialda to 4 pills but he said he didn't think that was the answer. He believes I need Remicade. I do NOT want to take Remicade because Im so fearful of the risks involved.

I had horrible side effects from Uceris, so a steroid is not an option. Enemas / suppositories are not an option either because my UC affects my entire colon.

Is there no other option? Would you guys go straight to Remicade? He said the chances of me developing cancer is higher with me having chronic inflammation for 18 years than taking Remicade. What do you guys think?

As I was reading the first part of your post, something my own doctor said to me flashed through my mind. And then I read the last part, where you wrote about your doctor saying the exact same thing. "It's far more risky to leave inflammation unchecked than it is to go on a biologic."

I was SO reluctant to go on Remicade. I started with Asacol, but because I started getting hives (like every day, bad, including very pronounced swelling in my lips, eyes & ears...it was bad) I had to stop the 5ASAs. (We tried Lialda, too, but that made me swell as well.) I tried a few other things: natural remedies like Cat's Claw & Tumeric, FMT, LDN....we got flares under control with Uceris (worked ok, but not great) and Prednisone (side effects were hard to deal with and after my second go-round with Pred, I had bad withdrawl symptoms even though I went down 2.5 mg every 2 weeks...it was VERY hard to get off of it the second time and I don't want to have to do that again!

Miraculously, Remicade has been fantastic. They told me to expect results "by 16 weeks". In 24 HOURS, the bleeding had very noticeably decreased. I was feeling a lot better within about 3 days. It's not the sort of "manic improvement" I felt with Prednisone (like, I can't sleep, I have to clean the house, I feel TERRIFIC on 5 hours of sleep!"), it was like "I don't as tired and weak as I did when the flare was at it's worst. I think I can stay awake while driving now. I can stand up for 20 minutes and cook dinner tonight."

I know there can be side effects with this drug, just like any other. But for me, it has been nothing but positive effects.

Another thing I'd recommend to you is to read about the MTHFR gene mutation. Apparently something like 70% of people have it (because it helped people survive the plague back in the day, so if you lived through that, you probably had the mutation.) The down side is that those people can't properly break down folic acid into a usable state. So the excess folic acid just sits in our systems and causes inflammation. I had slight intermittent bleeding for a year after starting Remicade, and it finally went away once I started taking an L-methyltetrahydrofolate supplement (the usable form of folic acid), and limiting folic acid-fortified foods in my diet (it's very difficult because it's everywhere, so I don't go crazy about it, but when I have a choice, I pick the thing with less folic acid.) This just came to mind because you mentioned your continuous inflammation, even while on Asacol & Lialda.

Hope this helps!

Thanks for your responses, guys. The doctor didn't mention Humira at all, just Remicade. I return in 6 weeks to see how the 4 pills of Lialda is going.

My normal flare includes diarrhea, some pain, and gas... but no blood or mucous. That's why Im wondering if I need to go as far as Remicade... since I consider myself to have Mild UC.... Maybe Im just making up every excuse not to take it.

Colie75 - I have never heard about MTHFR gene mutation. I will read up on it.

kazbern - I actually asked the dr about rectal meds today (since ive read about it on here so many times) and he told me that was mostly for those with left-sided UC and since mine is the entire colon, it would not work for me.

Remicade is the first and only uc medication to put my uc in remission (1 bm a day without urgency). Are there risks, yes, but they are less than 1 percent (6 in 10,000 or 0.06 percent); it isn't prednisone by far. The benefit is 60+ percent of people have improvements in their uc symptoms. So, tge benefits far outweigh the risks. Some other odds to put the risk into perspective. The odds of death in a car crash are 1 in 100. The odds of death due to heart disease are 1 in 5.

Remicade, humira, and simponi are all choices. Remicade is a IV treatment given under nurse supervision. All the others are self injections (subcutaneous, meaning just beneath the skin).

so, you've only seen 2 docs in 18 years ?

and why so many scopes ? the number you're talking is above normal - unless you are 93 yrs old ;-)

have you ever used rectal meds - or been prescribed them ? regardless, that's the first thing I would try -

My GI explained the only difference between Remi and Humira is Remi is made from a mouse protein and Humira from a human one, also Remi is IV injections and Humira is a pen injector that you do yourself at home (so it's more convenient) which is why I chose Humira when my GI asked me which one I wanted.

Other than that, they are both biologics that are designed to work the same way and basically have the same risks to one another.

Gosh, this all sounds like nothing I want to be part of (Im sure it is the same for all of you)!

JustStud - When I was originally diagnosed 18 years ago I saw one doctor then got a 2nd opinion -- been with the second opinion doctor for the last 18 years and today saw a new GI. Again, I took the disease for granted and never took it seriously until now.

DBwUC - yes, 18 years of inflammation. I guess I never felt sick but would flare annually, which would be when I would decide to get a colonoscopy.

I will read up on Pentasa and suggest rectal meds when I go back in 6 weeks. I just don't see why I have to go straight into IV or giving myself shots....

LiveStudioAudience said...

ATQT said...
I actually asked the dr about rectal meds today (since ive read about it on here so many times) and he told me that was mostly for those with left-sided UC and since mine is the entire colon, it would not work for me.

That's sorta like saying since you only have enough food for 1/2 a meal, you just won't eat at all.

Or saying that since you can only find the bottoms of your warmest flannel PJs on a cold winter night, you'll just wear no pajamas at all.

Or saying that since the fire hose can only reach far enough to save half of the house that's on fire, you'll not bother to use it & instead let the whole place burn to the ground.

That's my thinking too. Do everything you can to heal your colon. Pancolitis means inflammation at the bottom too. So hit it there. There is no downside to trying rectal Rx and a doctor that discourages it is not a good doctor.

colie75 said...
Another thing I'd recommend to you is to read about the MTHFR gene mutation. Apparently something like 70% of people have it (because it helped people survive the plague back in the day, so if you lived through that, you probably had the mutation.) The down side is that those people can't properly break down folic acid into a usable state. So the excess folic acid just sits in our systems and causes inflammation. I had slight intermittent bleeding for a year after starting Remicade, and it finally went away once I started taking an L-methyltetrahydrofolate supplement (the usable form of folic acid), and limiting folic acid-fortified foods in my diet (it's very difficult because it's everywhere, so I don't go crazy about it, but when I have a choice, I pick the thing with less folic acid.)

Great advice. My 23andMe results indicated that I too have the MTHFR gene mutation so I try to switch from folic acid to folate which is the natural form of folic acid. Unfortunately colie is right that folic acid is everywhere and apparently very few vitamin companies have multivites with folate instead of folic acid.

I never knew until recently that folic acid is an artificial form of folate that was synthesized in 1942.

you shouldn't have to see either doc to get a script for rectal meds - just phone it in and see what happens -

but it does seem like a third doc might be advisable - the other 2 kinda sound like boneheads !

What up ATQT, is that like a poker hand name? Ace Ten vs Queen Ten??

I would look into j pouch surgery if you have chronic colitis, if you don't mind me asking, what did your biopsy say? Mine said:

"Chronic active colitis with acute cryptitis and crypt disease, crypt abscess, erosion

The chronic active inflammation is associated with glandular distortion; positive for crypt abscesses, ulceration. Negative for granulomas."

Rifaximin might help, but it may just be the placebo and withdrawal/dependency on it may be an issue, not to mention side effects. All medications are poisons, even mesalamine. The dose makes it therapeutic or cancerous.

I would hate to imagine what would happen if someone overdosed on Remicade or Humira or 6MP/Simponi