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A few questions about a bad Flare

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Ulcerative Colitis
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Posted 3/23/2017 4:17 AM (GMT 0)
Flowersgal posted a good one on entyvio tonight seems like its working for people. So its hard with UC since it varies from person to person but wanted to share a few ideas some buddies had and chiropractors not really sure what to do.

so remicade stopped working, i was on humira for 5 months not only did it do nothing, it made things slightly worse! so i stopped about 5 weeks ago, I've been on prednisone for about 2 months, started at 40mg and down to 20, when i went to taper to 15 i went back to loose stools and tons of mucus. then doc upped it back to 20mg and try and repeat taper.

2 weeks after stopping humira i was near perfect with just prednisone almost remission!, then i went to taper to 15 now its like the worst mucus ever, i no longer have stools pretty much its just liquid and mucus all day. had to take the last 2 days and cut work early. went to ER to get checked for cdiff since i thought maybe its that.

5 days ago the only thing that has changed have been adding Vitamin E, d, and dgl licorice and turmeric . I'm wondering if maybe the dgl is producing too much mucus?

my chiropractor buddy who has somehow beat colitis with zero drugs says i should fast for 2 days, then go no carb diet until I'm basically back to normal

my diet consists of : strictly whey isolate no lactose, almond butter, chicken, lean steak at times, ground turkey, was doing almonds plain in know its not the best; jasmine rice, and karbolyn (carb powder with no sugar- its based off potato and sometimes corn- which might be inflammatory)

I'm supposed to start entyvio on monday as well, which I'm hopeful for, i just don't know what i should do diet wise, I'm a professional athlete so i can't really afford to lose muscle- I've been maintaining for 5 months but thats about it.

he also wanted me to do regular chiro visits, and do these probiotic gut shots he calls em i think it has ginger beet shot is what its called.

il be honest i was doing one BAI drink a day which has erithrytol and was doing about 70mg of caffeine per day too which i know he said get rid of, i also do a pre workout which has splenda and he said sweeteners destroy gut health too

lastly he said i need to only eat grass fed meats, since he claimed the GMOs and the feed they have (corn and wheat etc- will cause more inflammation when i eat it..... thoughts?

my objective is to beat this flare, and maintain the most muscle mass i can and get healthy without too much weightless, thanks all!
Posted 3/23/2017 1:42 PM (GMT 0)
How bad is your flare? do you have blood/urgency/pain? How many BMs per day?
If I were you I would try antibiotics - they trigger remission in some people (and they did for me). Otherwise I suggest you look into the GAPS diet, which has also been very effective for many. Another alternative option I have read of is low-dosage naltrexone, but I have not tried it myself and I do not know personally anyone who has tried it (but I have read on forums/websites that in some cases it works).
In general I agree that giving your bowel a rest is a very good choice - problem is that most people just cannot do it because it is so difficult. Instead of fasting you could try an elemental diet for a few weeks, which also cuts to zero your large intestine activity
Posted 3/23/2017 3:50 PM (GMT 0)
I'd go on the entyvio. Diet did absolutely nothing for me, and this is just a reminder that it's not everyone's solution. Try adjusting your diet as it does help some with their symptoms, but always have a healthy skepticism. It's all about results and if you don't get results then move on to the next thing.

The only way I reached remission was to be on Remicade, 6MP, Lialda, Rowasa, and prednisone simultaneously. Sometimes it takes a lot. Fortunately, it takes less meds to sustain a remission than to achieve it.

Diets are hyper individual, if your symptoms are not bad and you have lots of time to experiment then you might just find something that helps.
Posted 3/23/2017 4:04 PM (GMT 0)
Have you tried nicotine?

I spent yesterday drinking coffee, eating a bunch of spicy mexican food with loads of bean, cilantro, onions, and other raw veggies. Normally I'd wake up the next morning with a good old nothing but bloody mucus BM. However, I had an almost totally normal slightly blood stained BM. Normally I have to take a shower after every BM, to wash the bloody mucus away. Not today.

The connection between the gut, brain, vagus nerve, and intestinal flora is profound. Acetylcholine is the main neurotransmitter involved. Nicotine modulates the action of acetlycholine. For some people this seems to end the immune system attacking the gut. Gastro doctors make their money prescribing drugs and surgery. They can't make any money telling patients to try nicotine. It seems some of the more scrupulous doctors will advise their patients to try nicotine, but usually only after years of trying horrible drugs.
Posted 3/23/2017 4:06 PM (GMT 0)
It's pretty bad like a crazy amount of mucus basically no formed stool, and blood too, more urgency but not too bad

Which antibiotics? I haven't tried no I thought those ruin gut health?
Posted 3/23/2017 4:39 PM (GMT 0)
Some antibiotics actually help (some) UC patients by killing pathogen bacteria which trigger the immune system reaction leading to a flare (but you are right, they also kill the "good" bacteria - however the net impact is positive for many UCers)

For a list of which antibiotics typically work, see the UC resources link below

https://www.healingwell.com/community/default.aspx?f=38&m=1666318
Posted 3/24/2017 3:13 AM (GMT 0)
I'm in remission right now and the three or four times I have smoked a cigar since my last flare up are the only times I've started bleeding really heavy again. And then it just goes away the next day.

I'm highly skeptical of homeopathic or naturopathic alternatives to western medicine and I can't understand people's aversions to GMO's. I don't know how starving for 2 days and then not eating carbohydrates will stop your immune system from attacking your colon. At least if he said to gouge out your glands with a sharp spoon I'd be able to make a logical connection but I'd advise that the bone cruncher stick to giving advice about pillow firmness and proper lifting techniques.
Posted 3/24/2017 3:59 AM (GMT 0)
Do you take glutamine? It is the most abundant amino acid in your body--amino acids are the building blocks of muscle. Glutamine will help to preserve your muscle while on prednisone (as corticosteroids are muscle-wasting) and glutamine has also shown to help heal the gut (no surprise since it is the #1 building block of healthy tissue). When I was a competetive athlete I took a lot of it, like 20 grams per day of powder in liquid.

I use a combination of diet, lifestyle, supplementation, and medicine in order to best maintain my health. So I would listen to your chiro friend about things like avoiding splenda (he's right, it's toxic to your gut) but don't just abandon your meds and take tumeric or whatever "cure of the moment".

I would try entyvio if I was you. Since you've run through almost all the biologic options, have you considered surgery? Plenty of pro athletes have had colectomies, some with j-pouches and some with ostomies. You perform a lot better when you're not sick. Plus you have to think about 20 years from now.
Posted 3/24/2017 4:00 AM (GMT 0)
thank you guys, today i lowered my carbs about 75% i increased my prednisone and dropped extra vitamin E and D, and licorice, a TON better today, day by day i guess
Posted 3/24/2017 11:43 PM (GMT 0)

UC long haul trucker said...

The combination of fasting, which allows the vowel to rest and heal, combined with the reduced carbohydrates, which encourage the growth of the pathogenic bacteria, seems to work in a proportion of patients, myself included. I do lose weight with it and feels it weakens me slightly, but no more so the profuse diarrhea I experience when I eat regularly despite my flare and is offset by the fact that I seem to get better quicker. Given that it's free to try, I'd recommend giving it a go. There's plenty of literature on colorrolled fasts and restricting carbohydrate intake, I think it's worth a shot at the very least.
Posted 3/25/2017 5:55 PM (GMT 0)
worriedUCer thank you
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