Stories from members off meds

Hi guys

I'm not here to plug any miracle cure, I respect everyone is at a different stage in their healing journey and I wish you well wherever you may be.

I'm fairly new to the world of UC, about a year in. I've had the flare which kept me in hospital, been pumped full of steroids till my moonface couldnt stand it any more and sunk to the depths of despair losing all hope and zest for everything. I may not be a veteran but I know what it feels like to lose yourself to a condition. To try and function in a relationship when you just want to disappear. Only a person diagnosed with a chronic condition knows that type of darkness. That dark cloud has lifted for now and I am (touch wood) currently in good health and getting my life back. Have been off meds for a few months- please if you have a strong opinion on this go easy on me :)

I'm looking to connect with UCers who are trying the medicine free route, to trade notes and find out if anyone is maintaining a long term remission. Also, it can feel quite isolating trying this route alone.

I've tried many protocols, diets and supplements. I personally find the most successful diet to be one abundent in organic vegetables and lean meat or fish in moderation, avoiding carbs, grains, gluten, sugar and nightshades. My health started to turn around rapidly when doing parasite and candida cleanses intermittently. A good liver cleanse will be my next but I'll go slow as it can overwhelm the system. I don't know if it is coincidence but since I started taking high dose niacin (200-300g daily) combined with arabinogalactan, my symptoms vanished. It has been the case for nearly 3 months so might be too soon to attribute it to this but something tells me this combination is a good one.

Is anyone else avoiding meds? Do you find it scary to do so? Do you read the warning signs of an impending flare or do they always come out of nowhere? What is working for you? Would love to hear your stories, thanks for your time!

Look after yourselves...
Lauren

Curious, what are you doing for candida cleanse?

Katerina-b said...
Curious, what are you doing for candida cleanse?

I'm more curious about the liver cleanse. How does that work? Do you make a large incision under the right ribcage, remove the liver, give it a good spraying with a garden hose, then re-insert and close up the hole?

Beave you cynical sweetheart. Wouldn't that be great.

Lauren, I'd encourage you to continue your diet and reintroduce the mild anti-inflammatory mesalamine-based drugs, they're 90 percent topical, we'll tolerated by most, and help reduce our colorectal cancer odds (something that's normally elevated for uc patients). Simmering inflammation can build under the radar until we reach a tipping point and flare. You might think you're doing fine and then *wham* surprise after a series of months. I read multiple stories a month were somebody went med free and flared badly, it worries me.

iPoop said...
Lauren, I'd encourage you to continue your diet and reintroduce the mild anti-inflammatory mesalamine-based drugs, they're 90 percent topical, we'll tolerated by most, and help reduce our colorectal cancer odds (something that's normally elevated for uc patients). Simmering inflammation can build under the radar until we reach a tipping point and flare. You might think you're doing fine and then *wham* surprise after a series of months. I read multiple stories a month were somebody went med free and flared badly, it worries me.

Insert story here - I can speak on experience. I had a mild flare in 2008 hit prednisone for a week and started mesalamine. After 3 years and not another sign thinking I didn't want to keep taking drugs I cut my dose by 25%, saw no noticeable issues and then I just got a little lazy and would miss a dose every now and then. Well around 4.5 years later with absolutely no sign of issue I had blood in one stool called doctor and he went ahead and told me to reup my asacol and start pred and we would do a scope in 2 weeks. By the time I got to the scope I was in full blown flare.

Long story short flare went ballistic, docs tried everything under the son, including crazy stupid rates of prednisone and biologics. Nothing worked ended up going to bathroom 30+ times a day and in 3.5 months went from 210-135 lbs. Ended up at Mayo where they recommended surgery, but unfortunately while they were doing test to ensure I had no signs of chron's they noticed I had pneumonia so I got to spend a month in the hospital between the pneumonia and colectomy.

So my brilliance of trying to keep from taking meds caused me to take high doses of prednisone, tons of antibiotics and lose my colon. In hindsight I did my body much more harm by trying to get off of a drug that has very few long term affects. Everyone is different, so I wish all the best, but for me it was a really bad idea.

ya, i was gonna say the same thing sorta as nssg hog - you have no way of knowing that you wouldn't have wound up in same place you are now even if you had continued to take your meds -

many like her have run through ALL the pre-surgery options before winding up with either no or reduced colon -

^When you say "cripple my immune system," what specifically concerns you? Because the hundreds of thousands of people, no, MILLIONS of people on biologics and/or immunosuppressants don't really have "crippled" immune systems.

If all those parasites, worms, fungus, bacteria, etc, can "easily overwhelm" someone with a compromised immune system, why doesn't the data show a significant number of people getting overhwelmed by parasites, worms, fungus, bacteria, etc? The data does show modestly elevated risks of certain specific infections, but your post reads like nothing but scare tactics.

As for the skin cancer issue, anybody on these meds should get regular skin checks. Can you show a link that Remicade actually *triples* the risk? More recent studies show an increased risk, but I don't think it's TRIPLED. What's more, the real concern with skin cancer isn't basal cell carcinoma or squamous cell carcinoma, but melanoma - and I'm not sure there is good data on whether Remicade increases risk of melanoma.

As for the black box warning, also well-understood. There's a reason why they no longer put boys & young men on combo therapy. I don't think that applies to you, does it? Since you were born in 1951, you're not exactly a boy.

As for the huff post link, now tell us the numbers for those risks. Without quantifying them, it looks like scare tactics, again. And then tell us the risks of under-treated UC or Crohn's disease. Or better yet, tell us the risks of aspirin, which is OTC and taken by hundreds of millions of people. Or tell us the risks of prednisone.

Biologics suppress a part of your immune system, not the entire thing. The vast majority of your immune system is still free to do its thing in fighting off colds, colds, etc. People whose immune systems really are shot succumb quickly to opportunistic infections (see: folks with advanced AIDS).

Now for my own pet theory. Speaking from personal experience, I think if anything has suppressed my immune system, it's the Crohn's itself, not the meds I take for it. It is an autoimmune condition after all (or, at the least, a deficiency of the innate immune system). I'm not actually any more prone to catching colds, but when I do get a cold it's harder to shake off than in my 20s. However, it's like that regardless of whether I am ON meds or OFF them.

But if forced to take an immunosuppressant then I would prefer surgery.

'Cos surgery is always a walk in the park without any complications.

Also, please use more up-to-date studies. I'll search for a few.

Post Edited (NiceCupOfTea) : 11/1/2016 7:50:31 PM (GMT-6)

IamCurious said...
I am an advocate of mesalamines to treat UC. Mesalamines are proven to have anti-cancer properties. I would take them if I weren't allergic. But if forced to take an immunosuppressant then I would prefer surgery. But that is just my individual choice, but I respect the individual choices of others.

The proven reduction in risk of colon cancer from mesalamines is pretty small, actually, enough so that it routinely gets called into question. Studies are very inconsistent on this, with some showing a large reduction, some showing no reduction, some showing an increased risk (!), and with most meta-analysis showing an overall small reduction in risk.

IamCurious said...
You should download a few episodes of Monsters Inside Me. When at the end of many of the shows, when the narrator says that those with compromised immune systems are more at risk, you should write a letter to them complaining of scare tactics.

I watch lots of documentaries, but when it comes to biologics and treating IBD, I prefer peer-reviewed published research, not documentaries. Because, yes, documentaries are often extremely one-sided or biased, or full of scare tactics. As I said, I've watched lots of documentaries over the years - it's one of my interests.

Louiseluck said...
Speaking of scare tactics, I am tired of relatives, even strangers sometimes, coming up to me to say I shouldn't smoke. Cigarettes are my lifesaver when my meds began to lose their effectiveness. The only side effect that I can see is becoming winded climbing stairs.

The long-term risks of smoking are well-known and are very serious - lung cancer, COPD, heart disease, etc. You may not feel the side effects of smoking now, but if you continue long term, you most certainly will.

Long term smoking is riskier than the meds used to treat UC, except perhaps long term prednisone use.

If you are having trouble controlling your UC with mesalamines and you feel that smoking is necessary to help your UC, then you are a candidate for stronger UC meds, not smoking.

At the last conference I went to, some of the speakers talked about how much more data there is on biologics and their risks from the dermatology field, because there are SO MANY people on biologics for psoriasis.