Surgery or Remicade?

[stickman7755]

My GI gave me the options of surgery to remove over 30cm of my terminal illeum and part of my colon or start on remicade. I'm leaning towards surgery because I don't want to be on remicade for the rest of my life. Also if I do have another flare up after the surgery I might then go on remicade. I would like to postpone remicade as long as possible.

Any advice?

Thanks.

 

[Grumbletum]

Yea, it's a tricky one. My GI referred me to a surgeon saying I probably needed a resection. After a year of problems with a fistula and abscess I agreed this was probably the best option. But when I went in for the pre- op, the surgeon advised me that the fistula had healed, to there is still a lot of inflammation and he said it's better to avoid surgery if you can.
I don't have the colon involvement tho. Have had two Remi infusions and tho I'm not 100%, I'm a lot better. I do wonder sometimes tho if it's just postponing the inevitable, but I hope not!

 

[Kacey]

The thing is, with Remicade (from what my GI has told me) is that it does heal the inflammation which is causing the scar tissue build up which could later cause an obstruction. In my case, I had a lot of scar tissue, which does not go away with remicade. Once you are scarred, you're scarred. So for active disease, remicade would be ideal, but if you are experiencing anything like I was-constant pain trying to pass food through my intestines, narrowing/stricutres of the intestines from scarring, then I would lean more to surgery. For me, I will be going on remicade any day now even AFTER having the SURGERY. Although I'd love to stay away from it too, I want to make sure this scarring BS doesn't happen again-though it will eventually. I'd like to prolong that. Good luck with your decision, I too had to make that decision but my GI was pretty honest about my situation so we chose to do both. Keep us posted!

 

[stickman7755]

I just got done with the GI appointment. He told me that I need surgery because there is a lot of scar tissue and the predisone wan't working. He also said that even if he put me on remicade the chances of it working were very slim.

 

[Kacey]

So did you find out when you can go for surgery? Are you happy with this decision? I hope it works out for you. So far, I am able to eat WITH NO STABBING PAINS!!! I mean, I am still in recovery mode and I have to take things easy for a while but it has been a relief to eat food without wanting to cry after! In the long run, I think in your case, it will be better as you'll have the chance to boost your immune system before you into surgery. That will make your recovery SOOO MUCH better. I went in, very ill and on IV fluids for a week prior, so I am struggling a bit now. Good luck and keep us posted!!! (Did he mention meeds after the surgery?)

 

[stickman7755]

I have my first appointment with a surgeon on monday. My GI doctor made it seem like I should have surgery sooner rather than later.

I am happy with the decision because I know what I have to do now, there is no more guessing. However, I have had moments were Im really really scared.

I would like to put off surgery until after the half marathon I plan on running Dec 4th.

 

[Grumbletum]

It's good you're seeing someone soon. I was scared too when I thought I was going to have surgery, but also kind of resigned after over a year of pain and problems. Many people here have been a lot better after surgery and tbh, it means they will actually see what is going on in there.

 

[SandyM]

I would be scared too although in your case it does sounds like surgery may be your best option if steroids aren't helping. I can't comment on remicade as never been on it although from what you have been informed it sounds like it won't help in your case if badly scarred. Being a keen runner like yourself I know what you mean but your health comes first!! or you won't be able to walk never mind run. The running you can ease back into when your able. You never know your actual surgery may be after the run you have planed. I have been lucky and avoided surgery to date although in the back of my head I somehow think I will need it at some point as no doubt I will have lots of scarring.
How long do they reckon it will take you to recover and I guess you will be put on some maintenance drug post surgery?

Good luck and please do keep us posted on how things go.

 

[stickman7755]

Sandy,
I'm not sure exactly sure how long recovery is, but people say it is usually around 5-6 weeks. I will be on Imuran before and after the surgery. The GI doctor said the surgery should be very straight forward, which eased my mind.

Also my white blood cell count was a little high after being on Imuran for 2 weeks, which is a good thing.

 

[Kacey]

Did they mention whether or not they are doing a lap or open surgery? THat will effect the recovery time.

 

[Rich.Gully]

i had that exact surgery 4 months ago best decision i have ever made. if you want here is a vid i made about the surgery/recovery http://www.youtube.com/watch?v=w65UHhYhxHY good luck man.

 

[SandyM]

Great vid and glad it worked for you. I'm sure this will be of great help to many.

 

[stickman7755]

Update:
I met with the surgeon today, it looks like I will be having surgery December 7th to remove a foot or so of my terminal illieum and part of my colon. He said he is going to try laparoscopic surgery but he said my terminal illeum is like a concrete pipe so he thinks it will end up being open surgery.

The good news is that I hope to still run/walk the rock and roll half marathon in vegas on December 4th. If I can't my girl friend will run in my place.

 

[stickman7755]

Rich,
I just watched your video and it was awesome! Thanks for making it.

 

[SandyM]

That's pretty good you got a date so soon for surgery. Good luck for the run and for the surgery. Hope all goes well.