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I am headed towards surgery but I can't tell if I am improving??

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Ulcerative Colitis
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Posted 3/14/2015 4:57 PM (GMT 0)
Hello all,
I have been on almost every medication out there over the course of the last 3 1/2 years and I have not seen result with anything except prednisone. Now I am on Entyvio but not noticing any improvement after months of infusions. It looks like I am headed towards surgery as my last option but I am desperately trying to avoid it.
Had my entyvio two days ago and yesterday I only went to the bathroom 4 times with very little-no blood or pain and the BMs were relatively formed. It has been a while since that has happened. However, today things seem back to normal, a little more blood and pain and less formed movements.
I don't know what to think of this small improvement, it makes me more hesitant to get surgery because Im seeing hope of a normal colon!
I don't know what to think!
Posted 3/14/2015 5:07 PM (GMT 0)
Do you have surgery scheduled or just considering it? I can only tell you my experience. about a week before my scheduled surgery my colon starts behaving very nicely. Like it knew what was it was in store for it! Lol. I started questioning it all. I didn't cancel my surgery because I knew in my heart it wouldn't last. Sure enough a few days before my surgery day all hell broke loose again. The reprieve from my symptoms was very short lived. Anyway, if you don't have anything scheduled, maybe you can do a wait and see.

I've seen a awful lot of posts lately about people being so terrified of having surgery (I've been there so I know the feeling) they would rather live with the illness when so many treatments have failed. Yes it's scary to go through surgery but in the end it's a huge blessing.
Posted 3/15/2015 1:46 AM (GMT 0)
I think if you are hesitant you are not ready.
Posted 3/15/2015 2:05 AM (GMT 0)
You're asking the question so let me ask about your life style:
What is your typical diet?
do you drink alcohol - if so, how much?
how active is your lifestyle (high performance such as hard or physical work at home, sports or strenuous workouts)?
How much stress are you typically under?
What about second opinions and trying other GI's?

If surgery is the answer then I just only hear of happy endings (talk to at least 2 surgeons)

Is it possible lifestyle changes (taking it easier and taking better care of yourself could help your UC)?

Sorry about your situation but there is a lot of help in here alone
Posted 3/15/2015 3:54 PM (GMT 0)
Thanks everyone for the replies, right now I do not have surgery scheduled, but I am in the works of having it scheduled which I am very hesitant to do. I don't know if I should take my hesitancy as a sign that Im not ready to do it and I should wait, but I am constantly told I can't just leave the UC untreated even though I would rather do that.
I do not drink or smoke, I stay away from most dairy and fiber, but other than that I eat pretty bland, but mostly whatever I want.
I am pretty inactive except some occasional exercise and I am typically very stressed and anxious, which I am sure doesn't help. I wonder if changing lifestyle aspects could help me improve but I am worried I am running out of time before doc wants to schedule surgery. ( I am trying to schedule it around my grad school schedule if I have to get surgery)
Posted 3/15/2015 4:54 PM (GMT 0)
Being that you said you have been on almost every available drug out there, it seems to me you would just be putting off the inevitable. And speaking from experience, there is never "a good time" to do it. You just have to do it and get on with your life. Start to finish my surgeries were completed in four months time and I was back to my life. I think you need to do some deep soul searching about what's best for you. Leaving UC untreated isn't a wise thing to do.

Also, it's not up to your doctor when you have surgery.....it's up to you and only you when you're ready.
Posted 3/15/2015 5:54 PM (GMT 0)
Sounds like the only two things you can try are reducing stress and getting some moderate amount of exercise. There is professional help and you have certainly a lot of online things to help you with.
Stress is linked to the immune system and reducing it is always a good thing.
Walking, yoga, meditation and talking to folks all help so find what helps you the most.

Wish you the best
Posted 3/16/2015 3:07 AM (GMT 0)
I think we're in similar situations--I'm on Entyvio but most likely headed for surgery too. How many infusions have you had? I agree with other posters--you should do it only when you're ready. Don't let your doctor push you into it (like mine is trying to do!). I too am on an academic schedule and would like to go back to teaching in the fall, but I've decided I need to not worry about the academic calendar and make decisions based only on my health.

I've also thought about doing the first step of the surgery in the summer and then the takedown over winter break. This would give me a little more time to see if the Entyvio is going to work and to make the decision.

Elisa
Posted 3/16/2015 3:12 AM (GMT 0)
I agree leaving UC untreated is a problem, but there is a difference between indefinitely and for a year or so. If the meds have things controlled enough that you are not too miserable, I think you can take some time to see if things turn around.

As for the question of improvement, you can't really assess day ot day or even week to week. Look back in 6 months and ask if you are improving.
Posted 3/16/2015 6:27 PM (GMT 0)
Laura,

It's a tough decision, I tried everything before my surgery but my UC was very severe. I had a few great remission for a few years each time but the flares were unbearable.

What I noticed after my colectomy was that I actually felt better without my colon then I ever did while in remission. I woke up from the surgery and I felt the best that I had in the 10 years since I first got UC.

The healthier that you are going into the surgery the easier the surgeries will be for you.
Posted 3/17/2015 12:16 AM (GMT 0)
I just met with my doctor today and he is now saying that he agrees with waiting for now, so I think I am holding off on surgery and waiting to see how it goes. I agree with what you all have said about doing it when it is right
elw:
I am not sure the number of infusions but I have been on it since around last July, about half that time every 8 weeks and then at every 4. My doc has been saying that entyvio can be a slow acting drug and wants to give it a lot of time. Like you, I have also decided not to rush into things just to fit it into my school schedule. I will base it on when it is really needed. Hoping entyvio kicks in soon though, and I hope it works out for you too!
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