entyvio 1 year

that's the worst. If i had to stay on prednisone indefinitely, i don't know what I would do. I recently had surgery and the best part about it is being off prednisone. That was the main reason I had surgery, I was sick of taking steroids. There is nothing else for the joint pain? Maybe MTX will help... I took it for my UC for a short period and it didn't do anything positive for my UC. Is the dry eye related to sjogren's? If you're on steroids, it's difficult to know whether entyvio is doing anything.

Have they ruled out rheumatoid arthritis?

Yeah i guess i would have surgery before wearing depends. I never had an accident and I had surgery. I just never felt comfortable being far away from a toilet because I only had a moment to get to the toilet. I did have a shart accident but not a full blown poop in pants accident thankfully, i don't know how i would handle that. I mean, you really can't handle it unless you have a full change of pants and clean up materials, large ziplock bag for dirty clothes. I never carried any of that stuff, i went the other route, didn't eat and hope for the best. Worked well I guess because I never had a big accident. Thankful to go on with life not having to worry about it (hopefully).

What if entyvio is causing the joint pain? remicade gave me awful joint pain. I could barely move. If it's giving you that kind of pain and you ahve ot stay on pred because of it and MTX, surgery is definitely better. Surgery is not easy though, it's a real hassle.

no RA....checked recently...... Surgery is not off the table .... I am really getting tired of the steroids, pain and mess

Judy, I realize some people have good success with them with few side effects and others have no other choices. I think you may have misread my post somewhat. I was responding to Monkey where after being on Entyvio for one year they were still going several times per day and wearing depends. Even though that may be a major improvement for them, if that was a different treatment they were doing many people here would be advising Monkey to dump that treatment and do a biologic. In other words, the treatment isn't doing anywhere near good enough and apparently is never going to do better and the risks with biologics are not worth being on them if that is the best they are going to do. I mean you do biologics so you don't have to wear depends. It was just my opinion that if that was the best that Entyvio or any other biologic was going to do then surgery is better than that and notsosickly girl even seemed to agree with me on that.

Surgery is surgery.... it changes things in your body forever... no backs. It is not for everyone. My PCP and I had this talk and he feels the same way I do... When the colon is gone... there will be other problems that follow. You body was suppose to have it to work correctly....there are problems that it's removal causes that are also long term. To make a good decision, all of us need to look at the bigger picture. How have we tolerated surgery before? How long was recovery with a serious surgery?? Other health risk that could put surgery it self a bigger risk. Age, wt, and financial commitments are also in the factor. I hAVE worked in health care for a very long time.... I have never seen a surgery(major) that does not alter the body's normal function in other areas. My thought ... at this time.... stay out of it as long as possible. I can hang with depends.... I can accept that steroids are not great and have long term effects as well. I feel like a lab rat sometimes with meds... but... life is rough sometimes. Don't like it but the alternative does not seem to great either.... UC STINKS... I HATE IT... BUT CANN'T CHANGE IT.
I don't think I will ever never ever accept its limiting me to what I feel I need to do in life. I'll continue to search for pull ups, be a lab rat, and I may fall over dead trying but I will not give up.
My Mom still tells me I am hard headed.

Thanks but i am not brave, just out of options. I have been living pretty miserably for the past few years.. This most recent flare up didn't have a break for 18 months. I tried everything. I think surgery was a necessity for me. It wasn't like I opted for it because I wanted to. I was totally against it for so long. I agree that losing a major organ, especially one as essential as a colon, is not good, but what is the option? Being 30 and wearing diapers and pooping myself? Not going out and living my life within 10 feet of a toilet? Giving up work opportunities? I can honestly say that as foreign as an ostomy bag is, it's liberating compared to having uncontrolled UC. I would imagine you would have to be pretty bad off to feel this way so I guess I was worse than I let on. I accepted the lower quality of life and said "I'm ok", that's exactly what I was, OK, never good or great, just hoping for a better tomorrow. It wasn't coming in my case. I am sure of that.

I am proud of the strength in so many with UC. Notsosicklygirl... you are a brave lady and wish you only good health from your surgery. If I were younger I would probably consider the same route.

I pray for a cure for all of us someday.