Latest Flare - What to Do Next after Cannabis and Diet

Was taken off all meds about 7 months ago due to elevated liver enzymes. Stopped Entyvio infusions for my UC and was put on a small weaning does on prednisone.

I was concerned about stopping Enytvio (although it seemed like it was becoming less effective after about 14 months) so I radically changed my diet to low carb/low sugar. Also started taking cannabis (vaping at night) and I felt the best I had felt in 6 years since being diagnosed with UC.

Didnt like getting high so I also started making coconut oil cannabis infused suppositories in March.

Continued to feel great.

Out of nowhere, I had a brutal flare last week and back on 40 mg of prednisone.

Not sure where to go now or what might have triggered the flare. I may have been less vigilant about my diet but other than that not sure.

Doctor wants me to go back on Entyvio but I have my doubts since it was becoming less effective anyways. Do I wean off predisone and try going back to a stricter diet and resume the Cannabis treatment?

Back to Entyvio and give it a shot again.

I should know better than to get my hopes up but was feeling great and thought I had found the magic combination for me. Back to the drawing board (and the bathroom.)

Any input appreciated.

What other meds have you tried besides Entyvio? If you go back on Entyvio insist that they check your blood levels so that you know how well the meds are staying in your system.

I just finally got my doc to check my Entyvio levels after insurance denied a request to increase the dosage to every 4 weeks. Hopefully the results will come back this week and an appeal can be filed. I like Entyvio. For about a year I felt completely normal ... pre-UC! Would like to get back to that again.

I'd say to try to get it all under control with your doctor first. Once you're back in that realm, then you can experiment with new diets and supplements.

Entyvio has been working for me, but it took quite a long time for it to begin doing anything. I've been on it since February and I think it's just now somewhat beginning to work. Your bloodwork does need to be monitored rather closely, though. My symptoms were briefly returning but my doctors had then determined that my levels were too low and that my doses needed to be scooched together a bit.

As much as I'd like to think that UC is just another one of those illnesses that people give to themselves from poor dieting and lack of exercise and that it can be fixed with doing the opposite, it isn't that easy, sadly. While CBD oil, Kefir, Tumeric extract, Slippery Elm extract, and fermented foods have helped me improve, I can't say that they'd EVER help me get out of a flare, and wouldn't necessarily keep me out of one.

*One thing I have tried lately that has helped me, is intermittent fasting. (stop eating at 8PM, don't eat until 12PM the next day, you're essentially giving yourself 8 hours to eat, then fasting for 16 as you sleep and skip breakfast). It helped me lose weight and gave my digestive system a break. It's helped me a lot in terms of getting my energy back and regulating my digestion. There's a few documentaries about people doing even longer fasts (30 days or so) to help rid their bodies of all sorts of ailments. It's certainly worth looking into.

Inflammation builds slowly, silently, and unnoticed over a period of months when we're under treated. Once a certain amount (critical mass) of inflammation builds up, we start noticing it as UC symptoms.

A single day of stress, a single bad diet choice, or a bad night's sleep will NOT cause a flare.

Flares are certainty with an UC (not a matter of "if" but rather of "when"), and in fact it's even part of the definition (a chronic illness with periods of remissions and flares...). What we can do is make our flares as infrequent and as mild as is all humanly possible, by staying on an appropriate treatment plan both when feeling well and unwell.

Disease progression can happen, even when we're following our maintenance treatment religiously. It's our UC spreading in extent or severity, we have a small percentage of under-treatment that builds up inflammation over time until the frigg'n floor falls out from underneath us and we're in a full flare. Progression is generally limited to the first 5-years of UC.

Our UC can just fit/tantrum for no reason at all that we can trace. Yeah, call it the randomness of UC, or how truly poorly we understand the underlying mechanisms of it all. These are usually very mild flares that are easily tamed by temporarily upping our maintenance meds (going from 2,400 maintenance dose to 4,800 flare dosage of 5ASA/mesalamine and adding daily enemas). When you're well maintained these are but a mild and infrequent inconvenience.

Post Edited (iPoop) : 7/10/2018 7:37:35 AM (GMT-6)

iPoop said...
Inflammation builds slowly, silently, and unnoticed over a period of months when we're under treated. Once a certain amount (critical mass) of inflammation builds up, we start noticing it as UC symptoms.

A single day of stress, a single bad diet choice, or a bad night's sleep will NOT cause a flare.

I can speak from my own experience, I stopped 6-mp because I couldn't sleep while on it even though I was in Remission. I felt amazing for almost 6 months and then bam out of nowhere a flare hit me and I ended up in the hospital for 3 weeks.