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Has anyone with UC stopped responding to Entyvio?

Digestive Health | Last Active: Jul 7 12:41pm | Replies (60)

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@ciaran

Dval. I am so very sorry for your troubles. Yes, this is the very worst situation. I am 72 years old and have had UC since I was 18. I have always been on a restricted food list and as a result suffer from poor health. I don't eat fruit, veggies, dairy, or fried foods. I have been hospitalized several times when I was younger, but I have found that since I retired I am suffering a little less. The stress of a time clock and noise and activity seemed to increase symptoms. Do you find this to be so? I am hoping you get some relief shortly.

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Replies to "Dval. I am so very sorry for your troubles. Yes, this is the very worst situation...."

Yes, being retired does make some things easier, and there is less stress. I have only had UC for a little over 4 years and it has been hell. It became so severe so quickly and it came out of nowhere. I had always been healthy, never smoked, drank or ate badly. Always exercised and never needed Rx for anything! Just started passing blood in stool one day and losing weight rapidly... I had never even heard of UC when I was diagnosed. As far as diet, after much research, I decided to try a whole food, plant based diet and have been eating that way for almost 3 years. I never cared much for meat, so that was no sacrifice. Eliminating dairy was a little tough, but it is what it is. I don't eat processed foods or foods with crap like carageenan and other stabelizers. It seems to help the symptoms, but it certainly won't "cure" IBD like some people claim. This disease is a relentless bitch and I have done everything I can possibly do to manage the symptoms. As I said, I have scheduled the proctocolectomy tentatively, but I am willing to try the one drug I have left to try. I need to know that I have exhausted any and all options before I have my colon and rectum removed because there is no going back from that... If that is my only option, then so be it. There has been tremendous progress in treating UC and Crohn's, but they need to focus on changing the gut flora, not just reducing the inflammation. The drugs they use to treat IDB have different mechanisms of action that target inflammation differently, but the inflammation seems to find different pathways. I have failed mesalamine and 2 biologics (Entyvio and Stelara), and I'm not doing too well on the TNF inhibitor (Remicade) so I'm ready for the next step. Hardest part is being on this roller coaster of hell because there are days I feel that I just can't do this again...Thank you!! I'm sorry you're in this situation, too, and I wish you the very best!!

Dval. You said you eat plant created food. Do you eat a lot of salad? I do not eat lots of meat either. Occasionally ground beef or plant based ground meat substitute. But salads and lots of plant based foods do cause loose stool. I do eat fish though. Sometimes the natural oils in certain fish cause terrible problems. I guess we kind of take it day by day.
I did say that I do not eat healthy foods. I find that if you are plagued with UC, you cannot follow a truly healthy diet. Stay away from juices also. Fruit, veggies, juices, absolutely no dairy, and by the way, almond milk, rice milk, etc if taken more than 2 ounces, will also cause problems. It's not just the ingredients.. it's the consistency. I have been managing this since age 18. My mom had it, my brother had most of his colon removed, and one niece has Chrohns. I eat lots of bread, plain rice, potatoes, etc. Like I said, not so healthy, but it allows me some days where I can actually go out of the house.