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New to the forum. Sick of this crohns shit!

K

Kimbersig

Hi my name is Josh. I have had crohns now for 7 years. The first 4 I was treated with entocort and did fine. Started having issues with flaresand had to go on humiera last year. I did great for a year on humiera no issues. Now I'm back to having flares and getting obstructions from the inflammation. Just found out today the doc wants to put me on entyvio. Would love to hear from anyone that is on entyvio or has similar type flares. Mine just hit all of a sudden and I start puking non stop for 8-12 hours then a few days later I feel fine again. Doc thought I had a stricture but CT scan showed no scar tissue just active crohns. I'm tired of this shit. I'm very active in the outdoors and thankfully nothing has happened while I'm backpacking or out of range of medical help but I figure one day it will happen! Looks forward to visiting with some of my fellow crohns sufferers.
 
A

AnnaP

Hi Josh. I have a new diagnosis of Crohn's and just started Entocort. I actually haven't heard of Entyvio, which I know you were seeking info about, but I am interested in researching a drug I haven't heard about yet. Why did you stop the Entocort? Have you tried anything with diet?
 
K

Kimbersig

AnnaP said:
Hi Josh. I have a new diagnosis of Crohn's and just started Entocort. I actually haven't heard of Entyvio, which I know you were seeking info about, but I am interested in researching a drug I haven't heard about yet. Why did you stop the Entocort? Have you tried anything with diet?
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q

I was on entocort till is stopped working. Then on humiera and it stopped working after a year. I have quit drinking but that doesn't seem to matter much. Diet wise I haven't found anything specific that messes me up. I have quit the raw veggies and nuts and keep hard to digest things to a minimum. Have you found anything diet wise that helps. Good luck on the entocort. It helped me for 5 years till is just quit working.
 
A

AnnaP

Hi Josh,
I'm just starting to do Whole30, which I have had some luck with, though it is impossible for me to tell if the luck I've had is related to the drugs I am also on. I have been doing a smoothie every day of 1 clove of garlic, a ton of ginger, orange juice base (calcium fortified for the entocort), pineapple, and berries. I had read that garlic is a natural antibiotic, and I had really good luck on antibiotics, so I thought it couldn't hurt (other than possibly making my skin smell like garlic...). I am not sure if it's working but I crave it all day and, at the very least, I feel like I'm doing something to help myself.
I am sorry to hear that the Entocort stopped working for you. I have only been on it for about 3 weeks, but so far the antibiotics (Cipro and Flagyl) were better. Maybe it hasn't kicked in all the way yet, though.

Was drinking making it worse for you? To be honest, even though you're supposed to not drink while on Whole30, I find that it actually makes me feel better (day of and after, depending) if I'm having stomach issues. Trying to avoid it, but if my stomach is upset, literally nothing settles it like a beer.
 
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