I want to be 100% off meds

Hi guys,
I'm totally new to this forum, but I need some feedback. I was diagnosed with UC nine years ago. NO flare-ups since being on medication. Formerly on Asacol 800mg 2x/day until they changed the formulary (put pills inside a capsule and call it Delzicol so it won't go generic). Tried Lialda, didn't like it. Now on Pentasa. Doctor initially prescribed 4g/day, I took only 2g/day because too many pills on an empty stomach make me sick. Doc was worried I'd have a flare-up; we compromised and I now take 3g/day. I want to wean myself off UC medication totally and I'd like to talk to someone who's done it.
A little history: I've been a vegan for the past 2 1/2 years, for moral and health reasons. Vegan protein shake with almond milk & fruit for breakfast, green salad for lunch, and organic veggies for dinner. Boring diet, I suppose, but I like it. I deviate a little when I go out, maybe some salmon or a veggie quesadilla with cheese. But mostly, it's high fiber and very healthy. Fiber intake averages 34g/day. Fat average is a little high at 40g/day. I still drink coffee and have the occasional glass of wine or margarita. Since going vegan, I average 4 healthy BMs a day, with seldom any cramping or constipation, and no mucus.
I think I'm a prime candidate to stop taking my meds and just live my healthy plant-based life. My doctor disagrees, but what do doctors really know about the powers of a healthy diet? Has anyone out there (with a family history of bowel disease) gone off meds and not had a relapse? Is it worth taking the chance?

Like mentioned, mesalamines are the safest meds for ulcerative colitis.
If you flare they may not be enough to get you healthy again. And you may than require meds like prednisone, immunosuppresive or biologics medications. While all of those are safe for UC 5 ASAs are the easiest to handle.
Also just because you are symptom free doesn't mean you are in remission. Unchecked inflammation is very dangerous as you know.
Also because you are vegan make sure that you check your b12 and iron levels.
Pernicious anemia is very common with vegans as b12 is hard to come by without animal products.

NiceCupOfTea said...
You could take the chance, but there's little point: the 5-ASAs are the safest drugs for UC by miles and seem to have a protective effective against colon cancer. Might as well stay on them, m8.

This makes sense.

Are you getting enough side-effects to justify going off them? It's a tricky thing to figure out.

I think med-free is obviously ideal, but looking it at objectively, I am uncertain whether it will work on a vegan diet, as the risk of b12, zinc, retinol deficiencies exacerbate UC flares. For example, it is virtually impossible to get the converted form of vitamin A, retinol (not beta carotine) on a vegan diet. Vegetarian might work far better, and you may need to add in things like butter, raw milk, kefir, etc, etc to promote substantial healing.

If you want resources, I'd suggest you look up Jordan Rubin and Jini Patel Thompson. They both have protocols that can get you off meds, but it will require a meat-eating / vegetarian approach. Plant based might be possible but you'd have to load up with butyrate rich (resistant starch) foods like beans, potatoes, plantains, peas, etc.

Best.

Since you've had no flareups since you've been on the medications for 9 years, why would you want to stop them? I'd argue you have found the perfect treatment for your uc. Many of us struggle just to reach remission and often to keep remission. I think it's a really bad idea, and I agree with your doctor.

Ulcerative colitis is an autoimmune disorder, that causes inflammation in the large intestine. Your medication is a topical, anti-inflammatory medication. Stop the medications and you're likely to flare, your uc spread in extent and severity...

VeggieLuvr said: " NO flare-ups since being on medication."


Well put VL !

How many BMs does the average, non-IBD vegan have per day? Because 4 per day does not sound like full remission to me. Besides, Dikid is right. Just because you aren't experiencing symptoms does not mean you're actually in remission. My understanding is that there are several types of remission: clinical (ie. are you experiencing symptoms?), endoscopic (ie. if a doctor inserts a camera, what does he see?), and histological (ie. if a doctor takes a biopsy and looks under a microscope, what does he see?). It's entirely possible that even though you're not experiencing symptoms, the inflammation is still present and the UC is still advancing up the colon.

We also could use some more information. What is your exact diagnosis? When was your last colonoscopy or sigmoidoscopy?

Thanks everybody, for your expert input!! No one knows better than those who are suffering with the disease. I will take your advice and stay on my medication. I remember all too well feeling as if my insides were coming out through my butt, and not being able to go anywhere that wasn't within 3 minutes of a bathroom (if I could hold it that long), and four doctors telling me it was all in my head. I'm so glad I've finally found a smart and caring gastroenterologist.
Btw Quincy, I would never go off any medication cold turkey; that's just asking for trouble.

I am on 1-2 bm per day. For whatever reason Potassium Sorbate seems to make a huge difference. Completely normal twisted rope once or twice per day just like before I ever had UC.

I still take sulfasalazine because I am driving 2 hours per day and do not intend to flare BUT I can tell you why most previous flares occurred. I am lifting weights every day and sleeping pretty well and eating right BUT these meds and anti-inflammatory diet are all holding me back.

What did I do previously when I felt they were holding gains back ? I stopped all meds and bulked up got shreaded and then flared every time. Wound up back on prednisone every time and have some of the scariest stories from those episodes including connective tissue failures like the bicep rupture at elbow simply moving boxes in the garage, the loss of an artery and sagittal sinus thrombosis landing me in the ICU with blocked venus structure at the back of the head costing $64,000. Some call it a stroke all I know is I was paralyzed on the other arm.

I am again tempted to stop all meds - but I do not because of the slippery slope that can get out of control. 5 months ago I moved here and a flare started but i switched back to sulfasalazine and went back to work and stopped it. Previously I was arrogant and stalled flares which eventually got the better of me.

Why are some people saying 4 BMs a day isn't remission? 1-2x a day is more the norm, but 3-4x a day is hardly unheard of. On top of that, VeggieLuvr also eats a whack-ton of indigestible fibre every day.

Marauder93 said...
I would be willing to cut off my arm if it meant I would be able to take mesalamine (or any drug) for the rest of my life and be in remission. Take it from someone at the complete opposite end of the spectrum, stopping meds now could easily be the BIGGEST mistake of your life

And no you wouldn't - not literally. Or are you going to seriously tell me you'd rather lose an arm than a colon?

Why do we say 4 bms a day not remission? The sum of bms per day can often give an approximation of disease severity. One of the first things my gastroenterologist asks me on office visits, is how many times a day I'm pooping. 4 bms a day is moderate disease severity, indicating inflammation is present from uc. I would call it simmering uc. Is it a 100 percent reliable, no. Diet can impact it, as can ibs. I would say 4 bms a day warrants further diagnostics, that is a flexible-endoscope, as disease activity is suggested.

"UC may also be classified according to symptoms, as either:

Mild: When the person passes < 4 stools daily (with or without blood) and no evidence of systemic toxicity;

Moderate: When the person passes > 4 stools daily with minimal systemic toxicity;

Severe: When the person passes > 6 bloody stools per day with signs of systemic toxicity, which may include fever, tachycardia (rapid heartbeat), and anaemia;"

I'd say 1-2 bms a day is remission. I'm regular at 1 a day in remission. Rarely, I'll go a second time.

I was going 3 times a day a year prior to UC. Then went down from one a day or every other day.

I'm glad you reconsidered, VeggieLuvr. But I would talk with your doctor just in case you do have mild inflammation.

I used to eat plant based and I still went 1x a day or less. Not until I developed UC did i ever go more than one time in a day, barring having a stomach bug, which was very rare for me (maybe 3x in my life until I got UC in my late 20s). When I was young, I could eat and drink anything without any repercussion. It's a shame that it turned out this way.

I have friends who go 3 or 4x a day with normal colons and they consider it normal. It's definitely independent to a person. I think you have to go by what you know of yourself. I know for me, 3x a day has never been normal.

4 times a day is not a flare sign for the majority...if you're a milder UCer and went 5-7 times a day then maybe 4 would still be a lot to you but it's actually not a number that indicates a moderate or severe flare by any means. Don't forget though, some people are quite inflamed inside and will only go about 4-5 times a day and feel pretty good in general even though they're still inflamed....these are the things that really show just how individual IBD is from one patient to another and a good reminder to take advice with a grain of salt, someone that's a mild case isn't going to get what a severe case goes through on every level.

But I know normal bowel people that do go more than once a day so the idea that 4 is a flaring number for all IBDers isn't realistic IMO.