Does anyone else have mid/moderate UC that won't go into remission?

I'm on 6mp, uceris, mesalamine enemas.

Nothing seems to make much of a difference, except for the enemas which keep things at bay. I recognize food and stress as triggers, and am trying to work with this.

This condition is not severe, and I think a doctor would laugh if I suggested remicade. But I've tried most things else, including prednisone, and nothing really helps.

Can anyone relate?

Right here, brother...

Yesterday, my GI increased my 6mp dose from 50mg to 75mg, he also doubled my prendisone from 15mg to 30mg and I am holding there for 4 weeks. He wants to scope me again in 4 weeks, and if there is no improvement in my inflammation then remicade is his recommendation. Will I take it? I am not sure yet, I got to research it in-depth, and do some soul searching for sure before I decide. In the end I might, we'll see. But I have my fingers crossed on the bump in 6mp dosage working for me...

Not for sure as I haven't taken the Prometheus Enzyme test. My GI's 6mp prescription is based solely on my body weight. I guess it is prescribed on a 1-1.5 per KG basis. He started me out at 50mg at the low range. Then bumped me up to the high end of that range. All of the bloodwork (CBC and LFT) has come back normal enough, so no worries I guess.

I've had mild to moderate UC for over 2 and 1/2 years and have never seen a remission. Asacol and probiotics help a lot but I refuse to go on pred, immunemodulators, or biologics. The risks far outweigh the benefits to me. I did take a short course of pred for about one week due to another condition and I was very close to a UC remission but I know that pred will never give me a remission unless I stay on it, which I refuse to do. I also refuse the risks of the other meds because none of them will put you into remission either unless you continually take them forever and forever and if you do that you are just sitting around waiting for one of those bad side effects, like cancer, to catch up with you eventually. In mild cases I think both patients and doctors are too obsessed with remission that they don't give enough respect to the risks of the meds to get you there. It's just not worth it to me to have a UC remission for 5-10 years, only to get cancer in the end. Of course, I do have to be careful that the UC doesn't give me colon cancer. In the meantime I will continue to find a cure myself without having to bring in the big guns with all the risks. I am closely watching Uceris as there doesn't seem to be much risk associated with that. The only question is whether or not it can bring on a long term remission without continually having to redo it several times per year or figure out how to use it as maintanence.

I've never been in remission with my IBD in 22 years now...I'm considered severe-moderate....I've also had complications with anal disease being in a flare with large perianal crohn's skin tags that were mistaken for hemmies and banded off during a flare, leaving them in a flare and doc suggesting that being a major reason for never finding remission...as a result my IBD has stayed constant in my colon as well (crohn's colitis---CD affecting my colon) and on and off with proctitis...probably another large factor for me never finding remission is I'm either allergic or non-responsive to the meds used to treat IBD.

I take one day at a time, it thoroughly sucks but there's not much else I can do besides what's listed in my sig to find at least a bit of relief...at least I have formed BM's and I guess that's something lol!

Yep. I got colitis, and I've kept it. No disease activity ever until two years ago, and 'flaring' ever since.

Ipoop: I haven't had a scope since my diagnosis over 2 years ago but my GI seems to think from my symptoms that I don't have much inflammation, if any. He isn't big on constant scoping, especially in my case. I have formed stools almost always and rarely see any blood. Diarrhea has been a thing of the far past, exept for a recent bout with antibiotics for a severe strep throat infection. I do still have frequency and urgency, although both of those seem to be diminishing as well. My GI believes that most of my current symptoms are actually due to IBS and not UC. I believe the standard in checking for colon cancer is waiting about 12 years before checking it regularly.

I don't agree with you on the higher risk meds as they could give me something life threatening before that 12 years even comes. That "small" percentage of lymphoma is very much misrepresented. Yes, the percentage is small but when you consider all of the people on these meds around the world, not only for UC, but for other diseases as well, you are talking tens of thousands of people who develop cancer from these medications. Tens of thousands of people is not a group I want to be a member of. On top of that, there are many other side effects that can be an issue that usually aren't even talked about. Thoreau more than likely had a reactivation on Mono due to Remicade. That could happen to me as I had a case of Mono 2 1/2 years ago. Bananagirl very likely developed a severe C-Diff infection requiring hospitalization due to Humira. I personally know someone who was taking Humira for RA and developed a life threatening infection which required surgery. It was very very serious. On top of all this, I don't have a spleen, which makes any infection, either viral or bacterial, a possible life threatening event for me. Unless my symptoms get worse I'm comfortable where I'm at and not taking any unneccessary chances and hope that if I do get worse I will have the brains to realize that surgery is a much better option than trying those dangerous meds.

Lutz: It is my belief that there is a reason why FT works much better in C-Diff cases than it does in UC cases. With C-Diff you have an inbalance of good and bad bacteria in the colon, usually due to antibiotic use. By repopulating the good bacteria, it can overcome the C-Diff infection and "cure" you. In UC there is usually also an imbalance of good vs bad bacteria but, unfortunately, it is often or usually due to our immune system's being out of whack and theoritically attacking a good bacteria in our colons, causing that imbalance. By doing a FT you may be rebalancing the bacteria in your colon, which may help temporarily, but it doesn't fix your immune system so that eventually your immune system will attack and kill those very same good bacterias all over again until once again you get to the point where your imbalance is back again.

Wooly: I'm not a fan of biologics at all. I often recommend against them. I almost despise them. But, your doctor is full of shiit. Humira has helped many with UC. That's why the US FDA just recently approved it for use in UC patients. As with any treatment, like Infliximab, sometimes they work, sometimes they don't but for a doctor to just flat out say that Humira isn't effective against UC, well, like I said, your doctor is full of shiit. You can find many posters on this forum who have been helped with Humira.

I am intolerant of mesalamines and after trying 6mp at varying doses including adding in Allopurinol (in which I found out I'm allergic) my dr decided to put me on Remicade because I basically told him that I can't keep going on this way. I was mildly flaring for years before this decision was made. Mildly flaring was making me ohh soo tired! I was ready to just have it yanked out.

It was the best decision I have made because I have now been in remission for a year and its been awesome!

So... I think I am now able to say that I have not been in remission since I was first DXed with mild/moderate pancolitis back in July 2009. When my symptoms were at the worst I only had a small amount of bleeding, the burning pain, bloating, and urgency were my worst symptoms. After going on Lialda I found relief, however nothing ever went back to normal. I assumed it was the medication itself that was causing problems, but since the pain and urgency seemed to be gone I considered myself to be in remission. A few weeks ago, I had a strong flare-up that brought many of these symptoms back and was put on pred for the first time. After a couple weeks, I realized that my symptoms were not only going away, but improving to a point pre-lialda that I don't even remember. I am pretty sure the pred won't clear it all up as I only have a few days remaining, however this has definitely been a somewhat enlightening experience.

I've been fighting a flare for over a year now.  Before that, 10 years with no flares.  Before that, I had little, tiny flares on and off for 6 years that usually went away immediately with a few weeks of enemas.

Now I take mesalamine enemas twice daily, Colazal and tapering prednisone. Hoping to be off the Pred in another 2 months and get to remission (crossing fingers!).  But I've had annoying, mild flare symptoms the past year. No bleeding (only at the very start of the flare), smaller BMs most of the time, but formed.  Constipation. Gas most days.  Bloating and some abdominal pain.

My GI suggested Humira or Remicade too if I can't get off the steroids. I tried Imuran and couldn't take it to do pancreas issues. I also feel that a biologic is just overkill for mild colitis.