For those diagnosed with "mild UC"....what does your maintenance program look like?

i would simply suggest doing away with any thought process regarding meds and just keep taking them - leave the thinking for more important stuff like creating a forest fire that doesn't produce smoke -

*cough*cough*

You already know my opinion, stay on the mesalamines as long as they work for you as they're 90 percent topical and well tolerated by most without side effects. Certainly, you can pursue the maintenance dosage for UC patients, reduce to 2,400 milligrams of oral mesalamine, taper off of the rectal-route slowly, and stay there. Should your UC get worse during a taper (or you flare mildly in the future), you might need to go back to the full 4,800mgs of oral and/or the rectal-route.

I have mild colitis and take mesalamine and azathioprine. I've not had a flare in about 6 years. When just on medication, my mild UC, which was in clinical remission, meant I had watery stools (1X a day) plus some abdominal tenderness after eating. My GI rightly said this was as good as I could get on the level of medication I was on. I've never really considered going off the mesalamine (it's topical mostly and I've had no side effects from it). I'm always surprised that people are afraid of mesalamines actually. I wonder if I've been wilfully blind to the risks. I've been hesitant to go off the aza, on the basis that I assume it has helped keep my UC mild.

For me, the twist in all of this is that I developed painful spinal arthritis about 2.5 years ago, even while technically in remission. My next stop would've been Humira, which my rheum wasn't sure would help and which seemed to me a frightening medical step for someone with mild UC. So I started following SCD and taking turmeric supplements. Both have been very helpful for my remaining GI symptoms and have made my arthritis manageable.

I'm due to go back to my GI fairly soon and will see what he says about staying on aza. I do have a good GI who is always willing to have a long discussion on the balance of risks and the data that is available, so I trust him to advise me as best he can.

Thanks MarjieKay for post... we've been struggling with this together recently. I'm out of my first flare and a bit overwhelmed with where I go next. We've read lots of good advice about staying on our rx meds. I'm only on Rowasa currently... after reading what Ipoop just wrote, I'm wondering if my rectal meds could be changed to long term oral meds? Has anyone been down that route? My GI just said obviously the rectal meds work better for my disease (barely into sigmoid), but the orals are also effective for maintaining remission. I travel a lot, so it seems like a popping a few pills would be easier than carting around a bunch of enemas. Also, for those taking both, are the maintenance level of pills any cheaper?

Also, I'd like to dig a bit deeper on the other supplements - there are so many different ones and people seem to say, take what works for you. So my first question is, if we're in remission, how do we know what is working or is helping to maintain that remission? I'm starting curcumin in hopes that it will help arthritis in my knee and my UC - so I guess it will be more obvious if it helps my knee and if it does, maybe it's helping my colon too?

Also probiotics are a big question for me. The general consensus seems to be people with UC should be taking high count multi-strain probiotics. I've tried to ease into several with bad results. Some people have told me that they just can't tolerate them. However, after 3 weeks, my body has finally adjusted to a mere 15B count probiotic and it seems to be curing the UC induced gas that I've struggled with. After settling here for a bit, I was thinking about another 3 week journey to get to 30B, and then on to 45B... if I can handle it. There's obviously the VSL studies that show probiotics help, but my GI says he hasn't seen anything that says if 15B seems to be working who's to say that VSL's 450B is that much better? Maybe our colons just need "some" to settle back to a happier place? So going back to "what works for you" how do you know if you're in remission and things are good, that taking more/other supplements would help to keep you in remission longer?

Fortunately, diet doesn't seem to be a factor for me so far. I'm assuming that a modified diet only helps if you are cutting out things you clearly can't tolerate? Is anyone aware of any studies that show a specific diet helps maintain remission?

Sorry for the long post again... as a newbie there are so many questions constantly running around in my mind, and I know I tend to overanalyze things! I really appreciate everyone sharing their experiences and your advice.

"Fortunately, diet doesn't seem to be a factor for me so far. I'm assuming that a modified diet only helps if you are cutting out things you clearly can't tolerate? Is anyone aware of any studies that show a specific diet helps maintain remission?"

There are two schools of thought on diet modification. One is to avoid things that clearly cause GI irritation/immediate symptoms. This seems like a sound approach for obvious reasons. The other is that diet modification is a long term, blunt instrument to help address the dysbiosis that accompanies IBD and so it takes a while to see the benefits of the diet. IBD-Aid and the Specific Carbohydrate Diet (SCD) are in the latter category. There are studies showing the efficacy of both IBD-AID and SCD in helping achieve and maintain remission. I think most of the SCD clear successes have been with pediatric cases.

I met a rheum who said in her view 30% of autoimmune cases respond wonderfully to diet modification, 30% respond quite well and 30% don't respond at all. You can only figure out which you are by trying.

Think I missed DBwithUC's post while I was typing in mine - lots of answers to my questions, sorry for the regurgitation.

Thanks Ipoop. Your comment on probiotics was oddly enlightening... I guess I was thinking if you had UC, you needed probiotics.

FSLondon - I've heard of the diets, but because food hasn't been a problem so far I haven't pursued them. It's interesting to break down the diet into those two schools of thought and I will definitely go take a look.

I don't see the need to up your oral to 4000mg daily, although others will. When you flare, you can up it, and taper down for mainenance.
It won't deal with the rectum....makes no sense to me since that's where your inflammation has simmered for so long. Common sense rules that one methinks. Tapering enemas slowly to maintenance and using a lower dosage of 2g rowasa or even 1g pentasa....seems a plan your doc could suggest. There are options. If you're OK with her plan then go for it.
But if you are having constipation issues if you haven't changed food intake, i suggest starting them. Don't wait.

Keep us posted...

q

I can't see that it would sit there long enough to deal with inflammation.....
Just a thought to consider. Since rectal meds do....and that's where UC starts
🤔...it's a worthy point.

q

Casey_LB said...
I have had two gastroenterologists recommend I take curcumin, up to 4 grams per day. So if you're looking for something beyond prescription drugs, curcumin seems to be one that GI's believe in, as there have been studies to support it.

May I ask, do you use a curcumin extract or turmeric on it's own? the one I have in my Amazon cart is called NatureWise curcumin with 95% curcuminoids.

Product description:

Increased Bioavailability
Despite their extraordinary potential, many herbs can have limited benefits due to poor absorption. With curcumin standardized to 95% curcuminoids for powerful antioxidant potencies, our formula also includes ginger and BioPerine black pepper extract to improve the absorption, bioavailability, and benefits. BioPerine has been clinically shown to increase absorption by as much as 4x, making NatureWise Curcumin more effective than other formulas that do not contain clinically proven bioenhancers.*

It's the bioavailability I've been unclear on, Casey......

Thanks, IAC.......I'll check that one out, too. I am drinking a lot of ginger tea which also thins the blood, I'll have to do some research about the two together (although the one I posted about contains ginger itself).

Thanks Photogirl,

I will check that one as well. I am a runner and I'm beginning to ramp back into exercise mode. I took many months off and it's gonna be an uphill climb, lol. I wanted to allow my body to use every single scrap of my energy towards healing (that was the idea of taking a lot of time off anyway).

There are tons of people in my running group who swear by turmeric & curcumin for joint issues and basic inflammation, so it seems like having it on hand is a good idea anyway. I've always wondered about it !

@photogirl, that sounds like a great adventure ! with your username I am thinking there will be a Go Pro attached to the mountain bikes, right? awesome !

Thanks, I am going to ramp up slowly. No races on the horizon until next year....I am also integrating yoga into my routine and some more relaxing forms of exercise. A complete revamp....I think it's going to be good in MANY ways, not just for UC remission