Question for those who've had surgery or know about it

[rollinrock28]

I've been on Remicade for 3 years with little problems. Recently Remicade isn't working for me anymore and now I've been discussing having a surgery with my GI. After an MRI of the small bowell and a Colonoscopy they found that the Ileum is the only place where it's inflammed/having problems.

So I'm in the process now of going to a surgeon and seeing about having the ileum removed. My main question that my GI couldn't answer and so far research on the net hasn't answered is this (and I know it varies, but I'm hoping for just the most likely case).

If I go through the Surgery, how long will I have until I will have to be under medication again to control the crohn's? and what are my chances percentage wise of never having to be medicated again? I know these question vary from patient to patient, but does anyone have a good site or know off hand the actual numbers/percentages that these numbers fall in? It would help me greatly in deciding if I just want to continue with different medications or go for the surgery.

I was hoping that maybe there was some people here who have had the same surgery (just having the ileum removed) and could tell me how things have gone since then.

 

[GoJohnnyGo]

Hello rollinrock28,

Sorry to hear things have deteriorated to the point that you require surgery. Ressection of the ileum is very common -- many here have first-hand experience.

I had a double ressection (duodenum and ileum) and enjoyed a good 15 or so years of minor problems. Unfortunately, my Crohn's did return.

Others experiences vary. Sorry, but every person is different.

Welcome to crohnsforum. Let us know what happens.

Take care

 

[kenny]

I was not put on any maintenance drugs until three months after surgery. They wanted to let my body heal up and be able to fight off infection before starting treatment. Many times they will not start drug therapy after surgery unless you need it. With me The GP wrote the GI and suggested treatment due to my Crohn's being a penetrating case and the other manifestations of immune disorder. Maybe things well go well for you and you can be med free for a long while. Might as well hope for that anyway

 

[rollinrock28]

thanks for the replys. 15 years is worth a surgery I think. I was hoping to get some statistics on what the average surgery gives you, but maybe the surgeon will know some of that information. It would just be nice to not depend so much on doctors and prescriptions again... I'm sure many if not all who reads this forum understands that.

 

[Lisa]

Sorry to hear the remicade isn't working.....I've been on it now for about 4 1/2 years and am starting to develop some other issues - not sure if related to the remicade or not.....

Here's hoping you get at least another 15 years if not more of no symptoms!

 

[Mazen]

I had my surgery about 3 months ago and am med free.

My GI gave me the following stats:

Without meds the chance that Crohn's will return within 10 years or less is about 60%
With meds like Imuran it is about 40% (I don't tolerate Imuran)

Also the chances it may never come back are bout 5-10% if I remember correctly

He also told me to come after 6 months to a year for followup colonoscopy

 

[Dustin]

Hi rollinrock28, and welcome. I went about 2 years with very minor symptoms after my surgery.. then downhill again. It is completely dependent on the individual. I hope you have a very long remission after your surgery (if you get it done).

Good luck and best of health.