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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. 

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’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.

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