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dval (@dval)

Has anyone with UC stopped responding to Entyvio?

Digestive Health | Last Active: 5 days ago | Replies (28)

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@msgtrebholtz

Hello all,

This may not be what you want to hear at the moment, but I'll let you know anyway just so the thought process goes there a bit.

Anyway, I had UC for about 8 years and tried one of each type of pill, suppository, and biologic. None worked for me except Entyvio and for only a short time. If anything I turned out to be the poster child of "in the unlikely event of this side effect…".

Long story short and the part you may not like: I had a total proctocolectomy with permanent ileostomy done in 2017. I will tell you that this easily one of the BEST decisions of my life. I will not lie to you that it isnt the most pleasant initially, but once you settle into a routine and figure out how and what to eat you will be in a much better place.

In the four years since my procedure I am more healthy than I had been in years. I went from terrified to be out of sight of a bathroom to training for a half marathon. I have gotten to the point that I change my appliance about 3 or 4 times a month, I take NO meds (I do take a multivitamin, B complex and iron) and eat almost anything I want.

If that becomes a topic you need to explore i would be more than happy to tell you more of my story and let you in on a bunch of stuff to do beforehand to make "bag life" easier. Respond here or PM me.

Jason

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Replies to "Hello all, This may not be what you want to hear at the moment, but I'll..."

Thank you so much for your willingness to share. I have gone there mentally when the flares get so bad, I don’t know if I can get through another day. I was diagnosed at the age of 60, having no health problems and didn’t even know what UC was!!! I never smoked or drank, ate healthy and exercised my entire life. When this presented, it was a shock and took several months to diagnose. It quickly went from proctitis to pancolitis – the most severe form of UC. I adopted a whole food plant based diet, walk 5 miles a day and am currently on the biologic, Stelara. This last flare has been going on for weeks, and I am back on high doses or oral prednisone, waiting for the Stelara to work. The Entyvio only worked for 13 months and I was devastated! This disease has taken so much from my family and me. It has robbed us of so much! There are days I feel useless and miserable! I was an active productive human being and this last flare put me in the hospital, severely dehydrated and barely 100 pounds. The pain in my husband’s eyes was as bad as my physical pain, as he helped me in the hospital bathroom the 16 times I needed to go and it was just raw blood. It was one of my lowest points, being in a hospital in this covid world, too weak to stand up. I honestly don’t know how much more I can take…. My doctor is already talking about Remicade if the Stelara doesn’t work. I don’t know how many times I can be on this roller coaster of hell with this disease! It’s terrifying to leave the house and I feel so vulnerable having this autoimmune disorder in today’s world! We have worked and sacrificed our entire lives and retirement has brought this… I do see a therapist because there are days during the flares where I am overwhelmed by the fear of what’s next. The sleepless nights, the endless bathroom visits, the blood, weakness and the way the steroids make you feel. We have spoken to a colorectal surgeon in case I become an emergency surgery, as the UC has been fulminant a couple times. I would hope I would not be in that situation and that it would be something we can plan (as best as one can). I hope and pray for a cure for this debilitating disease, but I doubt that will happen in my lifetime. I am on a couple support sites for people with IBD because they get it…. So right now, I don’t know if the Stelara is working. The symptom improvement I have seen the past week may just be the prednisone (less bathroom visits, less blood, formed stool and I have finally stopped losing weight). Again, I thank you for your willingness to share!! I’m so glad you’re in a good place with all you’ve been through!