First surgical consult questions (j-pouch)

I would also add two questions. What is the expected time between steps. In addition, ask the expected recovery time of each surgery.

I also just wanted to note - my surgeon also noted, that in terms of determining if it's time for surgery, it's not important how bad you are at the time but how bad you are in general. When I finally made it to my consult, I was improving over where I had been...but I was on alot of Pred. So just because you are "somewhat ok" no, that doesn't mean your consult is worthless.

Also ask if they do it open or laparoscopic.

There was always a question if I had Crohn's too. There is no 100% certainty when it comes to that. All your doctor can do is come to the best possible conclusion by how your symptoms present themselves and what the scopes look like. I had every possible test done to help my doctor determine what I had before i had my j pouch surgery and in the end it pointed to UC more that CD.

It's good you are going to the consult even though you see an improvement. It's always best to be prepared. Good luck!

Thanks everyone for all of your suggestions. I had two consults (different hospitals)... they could not have been more different!! One of the surgeons told me that I should have had surgery "yesterday" while the other said he wasn't convinced surgery was right for me now at all -- that if I'm at the end of my rope he would do it, but I definitely have time to think it over. Maybe I'm naive but my tendency is to be very trusting of doctors, especially the ones who are at the top of their field (the surgeons I saw are extremely well regarded at top hospitals for IBD), and it is really hard to hear such differing opinions!

As far as specifics for me, both surgeons said that I would need a three step procedure because I've been on prednisone (two months now and counting, starting at 60, currently 30mg). As far as ending up with a Crohn's diagnosis, they both acknowledged it's a possibility for anyone with UC and that most likely they would try to reconnect the small intestine to the rectum if that was the case, and I'd just have to proceed with medical management.

One thing I am still confused about upon reflection is the following: both surgeons told me that after step 1, the sub-total colectomy, I would feel better immediately and be able to stop all my medications (aside from tapering pred safely) because once the colon is gone the inflammation pretty much goes away, even in the rectum. But if that's the case, why do we make j-pouches at all? Why not just keep the rectum? I'm sure I'm missing something...

Here's the list of questions I ended up asking:

1. Am I a candidate for j-pouch?

2. How many j-pouches have you performed?

3. 2 or 3 step procedure for me?

4. What are the steps? How much time in the hospital per step? How much recovery time? How long between surgeries? Total time from first surgery to ‘return to normalcy’?

5. What is the deal with the rectum? (ok I didn't actually say it that way... but I didn't understand until the consults why the rectum is left in-tact after step 1 if it ends up being removed -- I understand now that you have to maintain the rectal cuff in order to hook up the j-pouch later)

6. Would I stay on my current meds until the surgery? Would I still have to take meds after surgery?

7. What if there is evidence of Crohn’s after the first step? What can we do to rule out Crohn’s before surgery?

8. What could cause the plan to change? (e.g. during surgery X so we have to Y)

9. Surgery performed open or lap?

10. Pain management?

10. What can I do between now and surgery to maximize success? (e.g. gain weight, taper prednisone, antibiotics, etc?)

11. Risk of pouchitis? Risk of permanent ileostomy?

Thanks for the response B'Dereh. My understanding from the consults was that they call it subtotal because the rectum is left intact.

When the entire colon is removed, this is called a total colectomy, also known as Lane's Operation. If the rectum is also removed, it is a total proctocolectomy.
Subtotal colectomy is resection of part of the colon or a resection of all of the colon without complete resection of the rectum.
My colon was removed with a total colectomy. In my case, the colon was so diseased it fell apart. Based on what I went though, I would suggest doing the operation when you are as healthy as possible.

I know how you feel. I only had a week to process it all when they scheduled my surgery. Talk about emotions flying! I think it's better if you don't have to long to sit and stew about it. Best of luck with everything!

Thanks boot! It's funny, I've actually been following your blog since last summer, way before surgery was ever on my mind... having read your story (even your recent challenges -- you are a such a trooper :)) in advance and knowing the procedures and ileostomy are not the end of the world has really made the past few weeks so much better for me. Thank you for sharing your story!

I am so antsy it's unbelievable. I'm making a list of all the stuff I want to bring to the hospital and gathering my supplies, like that will make it happen sooner. It's like they say in When Harry Met Sally: when you realize you want to spend the rest of your life without your colon, you want the rest of your life to start as soon as possible.