Colon surgery - advice?

Hi, I know there are many threads on the surgery option, but I thought it might be easier to start a new one addressing my specific problem. Basically, my GI doctor (and colorectal surgeon) have decided that my best option is to have my colon removed. I have Crohn's colitis (no activity in the small intestine) that is not responding to any pharmaceutical treatment. While on Remicade/Cimzia/Humira my situation declined: I had multiple flares which required me to take prednisone, eventually enter the hospital for IV steroids, and also developed a pretty nasty fistula which became abscessed during my last flare. So basically, meds don't seem to be working for me. That is why the docs want to remove my colon.

But as I have read many of your posts, I find that my experience, while it interferes with my life, doesn't seem to be as dire as many of your situations. I don't get the pain, etc. I do experience fatigue and frankly, I take Immodium everyday to take the edge off the diarrhea, which is pretty constant. But I've kinda gotten used to this. I am concerned that surgery is such a big step and that while solving some problems, it may create new inconveniences/problems that I haven't had to deal with before. I am not sure it's "worth it" to do the surgery. On the other hand, my doc says it's only gonna get worse, and I am at risk for more complications down the road.

I guess my logical mind says you have to do this surgery, but I would like to hear other people's opinions. Also, can you tell me what's the worst part of having your colon out? I want to know whether I can handle that.

As a point of information: The surgery option that I was offered was to remove the colon. Create an ileostomy (small intestine shunted outside my abdomen) for 3 months while the rectum/fissures/fistula heal, and then another surgery to connect the small intestine to the rectum. Finally, the surgeon will plug my fistula. In reality, I feel that my situation is probably as good as it gets, so I am not complaining. Just need some idea of what the reality of living without your colon is.

Thanks for your help! C-

Sounds like the surgeon is recommending a J-pouch procedure. It also doesn't sound like you have tried a loop ileostomy?, which leaves the colon in place but allows it to rest and hopefully heal without being irritated with food passing through. The danger is that Crohn's may end up attacking the j-pouch meaning more surgery and a permanent stoma.

Hmmm . . . he didn't say "J" pouch during our discussion and I have never heard of a loop ileostomy. Although as you describe it, it makes a lot of sense. It looks like I have some research to do . . thanks for starting me off in the right direction!

Could the surgeon have meant a normal ileostomy as well where a stoma is created and output is delivered into a bag aka an appliance?? If that is the case, don't be scared because there are folks out there who have ostomies for other reasons such as colon cancer, birth defects, as well as IBD.

I've had my ileostomy since the age of 17 due to Crohn's. I exhausted all other avenues as well. My medication and diet therapy had failed and my entire large colon was inflamed along with having many fistulas and abscesses. I was in so much pain that I wanted to be put out of my misery. I was also living in the bathroom 24/7. That was no way for me to live. I was told that a j-pouch wasn't an option for a crohn's pt. because Crohn's tends to reoccur at the surgical site.

Anyway, I was fortunate enough to have 2 female ostomates visit me before surgery to answer all of my questions which put me at ease. That made a HUGE difference in my acceptance of the appliance. I knew I wasn't alone, there were others like myself, and support was always available to me if I ever needed it.

I'd definitely look into finding a local ostomy support chapter near you to ask other ostomates questions you may have to give you a piece of mind. If you can't find one, ask the local CCFA near you and see if they have a listing or you can search the united ostomy organization of america and see what that says. Feel free to PM me if you have any questions. I am a volunteer liasion for the local ostomy support group where I live and I was past president for 20+ yrs. so I have lots of experience and am here for anyone contemplating an ostomy. :kiss:

Best of health to you. ~gutless wonderwoman

I also have the option of thesame surgery, and am serioulsly considering it. sounds scary,aand therisk of not being able to have anymore children was mentioned. i'm not making any rash decisions, hopefully azathioprine might help delay it more

Ditto what Beth said.

If it is a j-pouch, you may get many good years out of it and hopefully the Crohn's will never spread to your small intestine. I had mine for 6 glorious years before my small intestine was affected.

Good luck! - Amy

Hi Christina,
If you have Crohn's and not UC, I wonder about the option of reconnecting to your rectum. Is your rectum not involved? You mention a fistula so I'm assuming it's leading to near the anus. If that's the case, the rectum and anus are probably involved and that might just keep causing problems in the future.

If you are young, I think the docs like to give this option so they don't saddle a young person with a bag for life.

Anyway, I don't know all the details and I'm making some assumptions. If I were you, I would get a 2nd opioion from another colorectal surgeon - just to hear them out.

Oh yeah, living without a colon is fine. I just ran a half marathon so all things are possible. But that is with a bag - I can't speak for how it is with a reconnection.

Best of luck to you!!

January 24th!

January 24th! That's the surgery date.

Yes, CDDad, I have an anal fistula that got abscessed, so there is a major possibility of Crohn's activitry continuing in the anal region.

I did a lot of research and meeting with different doctors. I will have my colon removed and an ileostomy with bag for 3 mos. while they evaluate my healing.

If I don't heal (around the anus/fistula/fissures), then they will complete the surgery as a proctocolectomy - i.e., remove everything below the small intestine. If things do heal, I have 2 options:

1. Keep the bag forever.
2. Resect the sm. intestine to the rectum and hope for no recurrence. My 2nd opinion GI doc suggested that the question is not if there will be a relapse, just when.

I really am not excited about keeping the bag, but they tell me that resection with no colon whatsoever results in a LOT of diarrhea with very little control - I thought that was why I was having the surgery in the first place? To get rid of that?? So I am unsure of the point of resection? Has any body had this procedure with their entire colon removed? What is it like?

Like everyone, I have had a lot of issues in my life, besides the Crohn's, and I had several good friends say to me: It will get better. I told them I trusted them, and I did so blindly b/c I could not imagine it getting better. Well, it did! So now that different people are assuring me that it will get better . . . I guess I just have to trust them!

Thanks for all your support and insight. I am open to any other thoughts, ideas, etc.

ALSO any ideas for fun surgery/hospital pranks - one woman told me she marked up her whole body with Sharpie notes!! What's the funniest thing you have heard of when a person is going into surgery?

Sounds like a reasonable approach. As for the pranks, like I said, I guess I'm no fun. I would not want the surgeons distracted by any pranks! Or thinking what a jerk I am right before surgery. Just treat them like the gods they think they are .