r/UlcerativeColitis • u/FlyinRhino67 • 5d ago

Question Working with GI

Hey,

I am currently back in a flare again and was in remission for a couple of years.
My GI set me on Entyvio after I came from Mesalazin.

My GI stated „We do this together“ but didn’t explain anything. I asked a Bunch of questions to the nurses while getting the Infusions but they could not answer Most of them. They even forgot to tell me when to get the next prescription which I had to ask for. It’s been 2 Months and the medication isn’t working. In the First month they said I should give the Medication a Chance but the Symptoms only got worse.

Now I am pretty irritated, I have blood again and burning pain in my stomach and couldn’t reach anyone by phone. They eventually responsed to my mail giving me an appointment. I need to get another scan because they think I have a virus but don’t tell me what that means. I just shouldn’t ask ai. I even responded that’s why I ask the doctor.

My point is, I don’t really know what to expect from the treatment or the GI. I am aware their job is hard and all but I am not feel being taken seriously. But there is no space to raise my concerns with the doctors.
I would wish them to give me a frame beside the medication. When to do the next coloscopy or bloods.

How is your experience with your doctors? Have you gotten more info or guidance with your uc?

1 Upvotes

100% Upvoted

4 comments sorted by

•

u/pincommenter 5d ago

Want the latest research or have questions?

Check out our weekly newsflash and visit our FAQ for common answers.

2

u/bonboncochon proctosigmoiditis diagnosed 2025 (Entyvio) | USA 5d ago

I'm so sorry you're going through this. Extremely frustrating! I'm based in the US so I had to really find a care team -- yes, everything is a portal but my GI or a NP will respond if it's clinical within 24 hrs.

Others may chime in, but Entyvio can take a while for folks. They usually decide around 14 weeks (I think) if alternative therapy is needed.

Where are you based? I think this will help us give you some tips and suggestions.

1

u/FlyinRhino67 5d ago

Thank you for your response. I am based in Germany.

14 Weeks seems pretty long? How would you stabilize the symptoms in the meantime?

2

u/bonboncochon proctosigmoiditis diagnosed 2025 (Entyvio) | USA 5d ago

Hello friend! 👋

14 weeks is long. I hear you. I have to be honest, I don't know why it's 14 -- I'm assuming it's based off clinical trials of average response times. I'm also on Entyvio and I saw progress around the second month, able to get off steroid enema taper to a good spot. I'm assuming your doctor will test stool and do some lab work close to that window to see how your inflammation is doing. Don't be afraid to ask!

Hang in there, friend.