Stopped taking Ulcerative Colitis treatment, no problems at all

You should keep taking them.

You don't have any problems now. But you probably will at some point in the future. It is the nature of this disease to randomly flare and subside. Taking the mesalamine orally and rectally provides an anti-inflammatory control to the colon, hopefully preventing flares.

That is a TERRIBLY idea. Dont get cocky. This disease will get progressively worse, especially if you are not medicated. Not only does it get worse, but it get more stubborn. If someone told me I could stay in remission by taking 50 asacol/day for the rest of my life, I would do it without even questioning it.

Dont take your healthy for granted!

Omg this scares me! You dont know how lucky you are to contol it with just that med! You could end up going up the ladder of meds if you flare. Omg

Yes alcohol is hard on your liver, worse in binge drinking.
Use common sense.

your call on the meds....you might have no problems, or you might be worse to the point of serious.

keep us posted...
q

My doc said about a third of patients tend to have a flare up that gets them diagnosed, it gradually goes away, and they end up in remission. I should've asked him more about this, but I didn't.

The other 2/3rds spend their time in and out of flares regularly or their disease getting to the point of needing surgery.

I think you'd be playing with fire to skip your meds because we don't know if your immune system really decided to lay off or if asacol is working well to keep your symptoms in check.

It's difficult, taking medications regularly and not really being sure why because you've been fine for years, but you'll be kicking yourself if it comes back. You never know if it may get worse and require heavier medications which is not a fun step. I complained about being on asacol back when it was working fine and I didn't realize how good things were until I flared up and required going on biologics.

I think it depends entirely on the pathology. It's possible there was a misdiagnosis in the beginning, as there are cases of microscopic colitis that disappear. A relative of mine was told to take asacol after a GI identified small patches of inflammation in the colon, but never did. He never suffered from any further GI issues.

There was a study questioning the efficacy of 5asa medications after 3-4 years of being asymptomatic. A former doctor of mine would have weaned me off if I were asymptomatic for a duration of 5+ years. There are cases of colitis that go away (barring no FMT treatment to address the root cause), so again I would question the initial diagnosis and get another work-up done.

My first doctor (the one who diagnosed me with UC) just told me to eat more fiber and I'd be fine. Because I wasn't on any sort of medication my UC spread to my entire colon and mesalamine made it even worse when I found out I was intolerant to it with my second doctor. I believe that the fact that I wasn't on any sort of med, mixed with my mesalamine intolerance, made my UC hard to manage and forced me into biologics. Don't get me wrong, I love remicade and it is working so well for me, but I'm scared to death of what I'm going to do when I'm no longer on my mom's insurance (which is awesome) and have to make sure my job has really good health insurance to keep covering my infusions. If asacol was working for you keep taking it! I don't know if it's like antibiotics where if you stop taking it before you should that you create a superbug that can't be treated, but I wouldn't chance it.

Also, what kind of jobs are you looking at? Because saying that a job requires no medical issues would be illegal here in the US. That's discrimination. I'd seriously question that.

danuc123 - I can relate. Was diagnossed some years ago - and thought that once the flare was under control I didn't have to take any medication. Which was okay for awhile, 6 months later I started flaring again and the doc said I needed to be on a maintenance dose of Lialda.

For at least a good year or so I only took 1 lialda a day - which some folks on here said was kind of like taking nothing at all. All I can tell you is this flare I've had since end of December was pretty bad. 6 weeks of blood and cramps/stomach pains. Like everyone says - everyone reacts different, but I'd really not suggest doing it on your own. I hate being on meds period - but until someone can find something that will help this non-medically, I think I'm stuck

I've been on sulfasalazine since weaning off prednisolone following Dx of severe pancolitis in 2006 (misdiagnosed as IBS some years earlier - until developing complications, somehow I lived with it untreated for that long). That's the only maintenance med I've taken. Despite having an untreated episode of the disease for 6+ years, I have never had a flare-up since getting a correct Dx 11 years ago and starting treatment, and sometimes I wonder if the Dx was "correct" (I know it probably is; just I don't seem to fit the 'text book' description of UC). I know first-hand how serious UC can be, as I was critically ill soon after being diagnosed (had a minor stroke, a cerebral venous thrombosis, a week after starting treatment with prednisolone - it can be a v. rare complication of corticosteroid treatment).

I know it's not a sensible thing to do... but there have been a couple of episodes where I've gone off the meds for weeks at a time, and I've never had a relapse. The first time, about 6 years ago, I went off them for about 5 weeks. I had some minor 'urgency' return, but no increase in frequency of BM's or other symptoms. More-recently I stopped taking them for about 6 weeks and the only symptom I seem to have had is an increase in flatulence. But I'm taking them again. I never intended to stop altogether; it has been a minor 'experiment' of mine, I guess, when I'm in between scripts. I've never had a problem after re-starting the meds. I'm not downplaying the importance of adhering to your medications, but am just posting my experience - I'm sure some people probably couldn't go a week without their meds without causing a flare-up; everyone's physiology is different. During those periods, I continued to take aspirin as stroke prevention (as I have done for 11 years).

Interesting to read an earlier post that one doc said about a third of patients don't have an ongoing problem/flare-ups. I wasn't aware it would be that many (if that figure is correct).

Post Edited (Plato8) : 11/9/2017 4:31:52 AM (GMT-7)

UC is likely an autoimmune or at least an immune deficiency. So, your immune system is attacking your large intestine and causing inflammation, an attack that does not rest/sleep and is continuous. Your medication, sulfasalazine, is anti-inflammatory in affect. While you are taking your medications, you experience no side effects.

If you stop your medications, you might be able to get by for a little while before you start seeing flare symptoms return (a few days, weeks, or months) but it will catch back up with you. It's a gamble. It seems there is a tipping point of a certain amount of inflammation, then our symptoms are visible. Our body can handle small amounts of inflammation without us noticing it. You get to a point though where the flood gates open and you have yourself a bloody mess to content with, a full blown flare. It's a common rookie mistake to stop your medications when you are feeling well.

There are consequences to said action.

iPoop said...
You get to a point though where the flood gates open and you have yourself a bloody mess to content with, a full blown flare. It's a common rookie mistake to stop your medications when you are feeling well.

Not sure if your 'rookie' comment was directed at me, but I don't consider myself a 'rookie' with UC given I've had it now for nearly 18 years; albeit misdiagnosed for the first 6 and half. As for a "bloody mess", one of the reasons I suspect I was misdiagnosed was that I wasn't passing (visible) blood - had a stool sample test done when I first became ill and that didn't detect any blood, either. I had a handful of instances where I was passing visible blood during the misdiagnosed years, but it was only after straining badly, and I put it down to that.

Unlike some other people here, diet has no effect on my UC symptoms, either. I can eat what I want and it makes no difference, thankfully.

You should discuss with your doctor that you have discontinued. You may flare in the next few months or you may not but you are taking a risk. Hopefully they'll agree to regularly monitor your fecal calprotectin so you can get on top of any inflammation quickly if it restarts.

Some people can get kidney and liver problems after long term use, that's why you should be tested yearly (via blood tests) but my gastros have always insisted that the risk is lower than the risk of bowel cancer from uncontrolled inflammation.

UK usually advise a colonoscopy 10 yrs after first diagnosis, don't ignore getting that done even if you have dropped off the radar with your medical team.