I am using it now for nearly a year. I had chronic pouchitis for years now. The result is a mixed bag for me. Initially it helped to reduce my symptoms but did not resolve them. However a pouchoscopy showed a nearly perfect pouch (compared to  a badly inflamed, ulcerated one last year). That was very encouraging. After a few months the symptoms  increased  and I assumed the drug stopped working and I went to do another pouchoscopy, however once again it showed a nearly perfect, healed pouch. So the drug certainly is able to clinically clean up or stop the inflammation but it does not address the root cause of this disease, which still causes urgency, frequent bathroom visits and discomfort. Now I take  Amitriptyline, that helps a bit controlling urgency, but still not enough.

Were you ever controlled on any medications?

initially i was responding to antibiotics, Rifaximin was able to put me in remission, to a half year or so. Cypro was providing shorter term relief. But ultimately i became antibiotic resistant.

Then I used 6MP that was also helping but not enough and I could not maintain a therapeutic dose, my white cell count went too low. After that I tried Entyvio.

Have you had any side affects?

No, nothing at all. Entyvio is quite specific to the digestive track and is known for less side effects than other biologics.

I stopped taking Rifaximin a year ago because I had been on it since 2003 and was having distention issues. (went to Mexico to get it before it was available here.) The distention cleared up but my recent pouchoscopy showed severe inflammation and ulcerations.  I consulted a doctor other then my own and also my own. Both recommended Entyvio. But I had an allergic reaction to remicade and was hospitalized for 12 days and required open lung biopsies and other horrible tests so I am trying to stay away from biologics.  Both doctors agreed I could try rifaximin again and in two weeks add VSL3. Apparently there was a study for treating pouchitis with an exact protocol of 1 gram daily of rifaximin followed by VSL3 so I will try that first. I am also trying hard to get into FMT studies for pouchitis or get FMT treatment as I believe that will help the most.

I'm about to try Entyvio for pouchitis so was looking for support as I am absolutely scared stiff st the prospect of taking it!  I'm obsessed about getting infections which might spread round my body and affect my two hip replacements!   I'm at a loss as to what to do for the best. 

Thanks for listening.  

Two different GI doctors I have spoken to have told me Entyvio is a plan B after plan A, Remicade, is proven not to work. This may be due to the fact that Remicade has been around longer and there are more studies showing its effectiveness. Entyvio is a newer drug which has been less studied.

Remicade hasn't failed me but if it does Entyvio is on deck as the next batter up.

I believe that you are much better off with Entyvio and you should feel lucky if it works. If you look at serious complications with Entyvio on drugs.com: nothing has been reported so far, with Remicade there is a very long list... if an anecdotal  case  is of any encouragement, I am getting Entyvio for 1.5 years, so far no side effects, whatsoever. A heard about a number of cases with allergic reactions, but those were treated routinely  and it happens at or very shortly after infusion, when you are under supervision. 

Took one does of entyvio and had a bad reaction. It happened right away. Felt awful. Didn't take it again. I'm glad that it's working for someone!

I'm really curious about this. I believe Entyvio is the brand name of vedolizumab? I was in a critical trial for vedo before I had the surgery, and it did nothing for me. Some have said on this forum (maybe not in this thread) that biologics act differently on a pouch than on a sick colon. So I would be willing to try vedo for increasingly chronic symptoms (not quite pouchitis but not quite healthy). However, in Canada (where I am), it seems vedolizumab is still in clinical trial for pouchitis, and there is a chance I would only get placebo. I have an appointment with my GI next week and I plan to ask him about this (he's already suggested I go into the trial for vedo), but I was hoping someone here might know the answer. It sounds like Entyvio is available in the US for pouchitis. Is it covered by your insurance, or do you pay out of pocket for it? I did Remicade for a while for my UC and was lucky enough to have it covered by my insurance (didn't pay a penny past my small annual deductible).

Any answers would be most helpful, thanks!

I have had my J-Pouch for almost 10 years and have developed ulcers above the pouch.  My doctor has given me 3 options: (1) to do nothing, (2) try a Hyperbaric chamber treatment or go on Entyvio treatments.  After investigating the hyperbaric chamber treatment which is not FDA approved, I am down to doing nothing and hoping for the best or Entyvio.  For those who are on the treatment, does anyone travel or have had problems with getting sick after the treatment?   My job has me working in schools and hospitals quite a bit.  My wife and I also travel by airline quite a bit from December through April.  I do not want to give up the travel but also want to make sure I am taking care of myself.

Everyone is differ but I just was on the Entyvio and it didn't work for me, I'm so tired of everything not working. I'm back in steroids.  Packing that weight on,,,ugh

Yea the next step is oxygen shots.I'm not  to sure abt that either....Wish u luck 

Can you explain about oxygen shots?  How do they help pouchitis?

I've been on  Entyvio for 2 years and am doing great check my bio I've been on everything and after the horrible remicade experience I cried and cried but it was this or pouch removal I'm actually allergic to Entyvio so I get premeds with bendryl and solumderol I have some side effects but nothing awful good luck 

PS I rarely get sick in fact I've been around a germy baby the last year and picked up nothing I've also traveled 

in the beginning before I got the pre meds I'd be off for a few days dizzy tired headache but it has gotten much better

lots of people have no problems 

Allykat (or anyone else), how is Entyvio covered for you in the US? It looks like I'll be moving there and I'm having success with Entyvio so far (knock wood) so I'm investigating how insurance treats it. Thanks!

I’m on Medicare and they cover it. When researching insurance companies tell them your on this drug to make sure they will cover it. If you qualify Entyvio Conect might be able to help cover the cost. You can call them. Info in the Entyvio website. 

3 years already👍

I’m on Medicare anybody know how much it would cost me?

Just your Dr office visit co pay Entyvio is fully covered 

Entyvio did nothing for me except a large medical bill!!!

Would you mind telling me who your surgeon is? Boy you have been through a lot too! So do you have a j-pouch or ileostomy? Are you able to work outside of your home? I just want to move on from all of this, although it seems to have taken my life over!  I absolutely hate it!!! I am still on TPN after 5 long years. I'm stuck though. I went to UH for a second opinion and the surgeon said that j-pouch can ntot be saved, but would just leave it and make a k-pouch I was like WTF to myself when this was explained to me. So now have to go through 20 cycles of biofeedback and PT. If this doesn't work back to stoma or Koch Pouch. I'm not happy with both! My doctor said i could revise the j-pouch but the doctor  at UH said no. I have done Remicade and that didn't work, tried Entyvio that as well did not work! 

Has anyone ever seen the actual image of your j-pouch? I did and it goes straight down with no image of a j. Every doctor said its supposed to be this way. Well, if it is why don't all of the images of a pouch you can clearly see that j shape. I know doctors protect one another to avoid any malpractice law suite. I just wish someone could just come out and say it made wrong. My gastro doctor did say she got so far and she didn't know what to do and stopped. This is why I am still on TPN after 5 years and I am down right disgusted!!!! what to do?what to do?

Omg that is terrible. Yes I’ve seen a picture of my pouch and it does show somewhat of a “j” 

My surgeon is Dr Milsom over at Cornel NYC 

My GI is there as well.

Honestly another opinion at a big teaching hospital should be fine.

Sounds like a GI and a pouch issues, I’m sorry. Yes, Ive been thru the mill but mine is Chronic Pouchitis. 

Hello Allycat, sorry to butt in! Csn I ask did the fecal transplant work or paleo diet for your chronic pouchitis? I’ve had all antibiotics for 20 years ready to stop for numerous reasons. Do you need to follow diet with Entyvio and can you take probiotics while on Entyvio! Sorry for all the questions!!!

Sorry I’m rarely on here anymore cause I’m doing so well on Entyvio

5 years.

The fecal transplant did not work.

No special diet.

I rarely think about my pouch anymore.

Perfect!! Congrats. I will be trying it 😊

@gottswood posted:

Has anyone used Entyvio for chronic pouchitis?

I hear its good! Are you doing better???

I'm getting Entyvio infusions every 6 weeks for the past 6 months and my pouchitis/Crohn's is doing MUCH better than before I started it.  This is my second biologic, Humira did not help me.  I'm on Medicare and pay nothing for the Entyvio infusions as long as I get them in a doctor's office, it would not be covered if I were to get infusions at home.  I had been taking Budesonide, Cipro and Xifaxan for 18 years for chronic antibiotic resistant pouchitis, the Entyvio is working so well I've already dropped the two antibiotics and am gradually going off the Budesonide.  I hope this continues to work for me for a looooong time:-)

@coloradoguy posted:

I'm getting Entyvio infusions every 6 weeks for the past 6 months and my pouchitis/Crohn's is doing MUCH better than before I started it.  This is my second biologic, Humira did not help me.  I'm on Medicare and pay nothing for the Entyvio infusions as long as I get them in a doctor's office, it would not be covered if I were to get infusions at home.  I had been taking Budesonide, Cipro and Xifaxan for 18 years for chronic antibiotic resistant pouchitis, the Entyvio is working so well I've already dropped the two antibiotics and am gradually going off the Budesonide.  I hope this continues to work for me for a looooong time:-)

That’s great news how well entyvio is working for you, I just weened myself off budesonide after taking for 3 months, now I’m back to where I started with the pouchitis. My docs are talking to me about biologics for pouchitis but I’m a little afraid of side effects

I agree, I’m worried about side effects and also it not working for me because only antibiotics ever worked and not the uc drugs for my pouch it is such as the foam rectal steroids or salazopyrin so definitely bacterial issue I guess?!

I’m very drug sensitive. I had a horrible experience with remicade. For the first few months I had to take Ativan after my infusion to keep me calm.
Yes, I do get some side effects, mostly sleepy after and headaches for a few days. I do premeds like Benadryl and solumedrol and that keeps some of the other effects at bay. Most people complain about joint pain. That immediately stopped when I added the premeds.  So much better than pouchitis and the majority of the people on it have no issues. Good luck. It was either this or pouch removal for me.
ps in Europe they have the self given shots every 2 weeks. We are waiting for that to come to the US.

entyvio 5 years

I have begun Entyvio infusions in March 2023. Will be talking to my gastro Dr this week as to whether I continue. I will be saying I want to keep going with it . I have crones and J pouch surgery in 1987. In the last 5+ years my pouchitis/crones symptoms have go worse and I have been taking antibiotics more frequently, which is not good, but they have worked. The Entyvio is a way of getting off or at least reducing dependence on antibiotics.

My major, in my life, problem is faecal incontinence. Antibiotics, ciprofloxacin plus Flagel, for 14 days calms it down but only for about 2 weeks, then back on them again. Not good for the body! The Entyvio so far, only 3 infusions, has seen me with better bowel control during waking hours; a lot less watery faecal matter and less frequency. My problem is that once asleep I will pass faeces without being aware. Not very pleasant as you can imagine . Not had this problem when the antibiotics were working. Tried taking the antibiotics after infusion, worked but the same as before i.e. stopped working after 2 weeks. Has anyone else had this incontinence side effect with Entyvio?

I don't think it's an Entyvio side effect - it just sounds like the Entyvio is only partially taking care of the problem, at least so far. It might do a better job over time. I've been on Cipro with or without Flagyl for about 14 years, and my GI function is excellent, so I'll be sticking with that (at the lowest effective doses) as long as it works.

I have had very up and down bowel control times. The "reason" for the Entyvio is to stop/reduce the antibiotic use. When I can no longer put up with the loss of control I will start a course of antibiotics. I have found that cipro X 2 daily for 3 days; 1/2 tablet X2 daily for 4 days; 1/2 tab daily for ~ 5 days and then stop works for me. I notice a big improvement in the first 48 hours.

I decided on this course myself and informed my GI of the results at a routine consult. He was a bit miffed at first that I did not "ask" first, but was OK with me taking control of my own medication eventually. I have my 5th infusion in 10 days. Think it is working to a degree, so will stay with it.

Cheers from Australia.

@@Aussie do you have entyvio in Aus? I’m moving to New Zealand from the US in October and just got news I may need biologics. So trying to figure out logistics  but think I could do antibiotics for the time being. Only planning on doing 3 months to start and then assess if I want to move permanently!