Anyone else feel like they’re never quite in remission?

Yes, I can completely relate. The first many years I had UC, I still had minor symptoms daily (4-5 BMs, nausea almost every day mid-morning for 20-30 min. for a year, urgency, some mostly mild pain). At that time, I decided to deal with those symptoms versus go on an immunosupressant because they weren't disrupting my life that much. However, since those years, I have had several decent periods where I had no symptoms to speak of so do not lose hope yet.

How long have you been on the Humira? Has your doctor mentioned increasing it to every week?Have you tried adding mesalamine enemas to your mix?

Yeah, they checked it at the wrong time. Glad you're getting your levels rechecked. It is a very frustrating disease and you're still pretty newly diagnosed. You still have several med options. I know it sucks waiting around for these meds to see if they will even work. I'm waiting for my Humira to be pre-approved right now. Im starting imuran too and am scared because I've read a lot of people have bad reactions to it.

I hope you can get into a really solid remission soon!

Actually, I could be wrong. I just know for Remicade you have to get the levels checked right before your next infusion so I thought it would be the same but maybe it's not. Hopefully someone else will chime in.

Thank you!

I had phases exactly like what you describe. This disease is a tough thing.

It's just my opinion but I largely grew it from by GI's feedback. You have little to no control over this disease. It's very human to believe and struggle to control what is happening, but that is the doctor and medication's job. If it isn't working, communicate back to them. Quickly and fully. Give them the chance to do their job instead of throwing yourself through hell trying to control the uncontrollable.

I got to the point with my disease where I didn't get depressed when symptoms flared - I got angry. It wasn't me and my responsibility to keep the thing handled. The disease is an invader and you should fight, not blame yourself.

Lots of people believe that this disease can somehow be controlled through diet or exercise or stacking polished rocks on the side of a river somewhere and chanting the lyrics to the Adam's Family Theme Song while invoking prayers to Kali. If it works for you, bonus and I don't judge. I tried all of that and it didn't do a thing other than make me miserable. Communication with my doc bought me several good years of remission on and off over the years, punctuated by bad years of flares when the disease killed the meds. But not blaming myself meant all of those years were good, in some way.

Good luck.

Thanks everyone. Well I was on 50mg initially but they said my blood tests showed I wasn't metabolising it properly whatever that means so they halved it to 25mg and added in allopurinol but then tests showed my levels were still too high so they went to every other day...

The literature notes some people get a great response to 1st line drugs and have long remissions. Others get an incomplete response and climb the drug ladder. Some eventually get well managed - and a few do not. CUrrently somewhere north of 15% will need surgery over their lifetime. That percentage is fortunately changing and getting lower as a larger arsenal of treatments comes out the pipeline.

Some people with good management of inflammation (what many GI consider UC remission) still have GI symptoms, or even stronger secondary IBS. Somewhere over 12% of people with no remaining inflammation.

I think younger folks can almost count on each decade of their life bring more options and hope because things are actively being studied. Older folks might work to accept the tightrope - much as diabetics accept a lifetime of insulin and blood sugar management (baring some large new therapy discovery).

Chronic illness can be depressing - especially for those who struggle with management. I had years of semi-management. I resisted immune suppressants, so maybe partly my fault. But after 5-6 years I got more and more managed. For the last few years I have tapered to a fairly low usage of Lialda, and can't remember the last time I saw blood. Some days I get a few trips to the toilet, but urgency is also fading into the past.

I guess I want to say, things can get better.

I’m starting to feel like I might never be in remission. In a way though, with me, I think my pessimism is harder to deal with than the disease itself. I like threads like this that make me feel less alone and more hopeful.

I was on meds for almost 2 years without anything working before I had surgery. Some downsides but all in all I feel great. That's a worst case scenario, just wanted to let you know even if it comes to that, things can still be great so don't worry.