Has anyone taken Entyvio for pouchitis?

Hi, @lcevenson1951 - welcome to Mayo Clinic Connect. You've had a lot of medical issues to contend with. Sorry to hear you're experiencing pouchitis.

I'm including here some Mayo Clinic information on pouchitis, if you're interested in further background on this inflammation:

- Pouchitis https://www.mayoclinic.org/diseases-conditions/pouchitis/symptoms-causes/syc-20361991

Tagging a few members on Connect who have mentioned pouchitis and/or vedolizumab (Entyvio) @dval @sandyjr @mariajean03 @jmccartney @mollys10 @embassy @borna02 @hardingv to join this discussion and offer their experiences with vedolizumab and pouchitis:

- Has anyone taken Entyvio for pouchitis? https://connect.mayoclinic.org/discussion/has-anyone-taken-entyvio-for-pouchitis

lcevenson1951 - wondering what symptoms you've had related to your pouchitis?

The only symptom is increasing number of stools. Sometimes not even that. It is just found on endoscopy

@lisa lusier could you please untag me from this post. I’m afraid that I won’t be able to offer any useful information as I do not have a j pouch

Hi, @lisag03 - I edited the post where I tagged you so you are not even mentioned. However, you will want to mute this discussion. In the Help Center https://connect.mayoclinic.org/help-center/, you will find instructions on how to subscribe or unsubscribe from a discussion.

Basically, what you'll want to do is this:
- Go to the discussion at hand https://connect.mayoclinic.org/discussion/has-anyone-taken-entyvio-for-pouchitis/.
-Click the bell icon in the bottom right of the first message.
-Select the setting you wish (in this case, it would be "Mute this discussion").
-Click Save Setting.

I took Entyvio while I had ulcerative colitis. Unfortunately it did not work for me.

I ultimately got a total procto colectomy. I reviewed the option of a j-pouch with my CR surgeon and specifically discussed the potential for pouchitis. He said they would treat it with antibiotics, with Flagyl (metronidazole) being preferred

So I am not sure why you would be considering Entyvio unless it is more than the typical pouchitis and perhaps involves UC or Chrohn's in the pouch?

Thank you for your information. Have been on several antibiotics and biologics for pouchitis. None have worked, therefore doctor proposed entyvio.

I hope this works for you if you try it.

I have had a jpouch for 30+ years. My scopes in the last 10-15 years have shown increased inflammation which my GI doctor classifies as chronic pouchitis. I started Entyvio in March of 2024. After 6 months, I had a scope which showed that the every 8 week infusion of Entyvio is working to significantly reduce the inflammation in my pouch. Great news, however, in the last year, I've also had 4 cases of respiratory infections / pneumonia that have lead to a diagnose of Bronchiectasis. It's discouraging to say the least. Entyvio compromises your immune system, which causes me to believe the bronchiectasis was caused by the infusion.

Wow, @jmatt816, you for sure have been through a lot. Really glad to hear the vedolizumab (Entyvio) is working to reduce the inflammation.

That is unfortunate that your 4 cases of respiratory infections/pneumonia have led to a diagnosis of bronchiectasis.

Hopefully one small bright light is that Mayo Clinic Connect has a very active support group for MAC & Bronchiectasis https://connect.mayoclinic.org/group/mac-bronchiectasis/. I'd encourage you to check it out and introduce yourself there.

With the vedolizumab (Entyvio) infusions, have you noticed any side effects?

Hi Lisa: thank you for your response. In regards to Entyvio, I have not experienced any other side effects that I can pinpoint to the drug. I also have cough variant asthma, so the coughing could be caused by either and now bronchiectasis.