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Colon Surgeon Appt this afternoon - help

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Posted 2/20/2012 2:31 PM (GMT 0)
Hi all,

As you may know I'm now dealing with refractory UC, I am in a major flare and have been out of work for about 3 weeks, Doctors have added so much medication to my cocktail nothing is working. This past Thursday they upped my pred to 40mgs, along with my azulfidine and cortenema, nada.

Can you tall tell me how long will it take for them to do surgery, do they have to wait for my colon to calm down or can they book me for an ileostomy right away.
I am very weak, tired and run down, going now about 12 times a day, nothing but watery diarrhea and some blood. I was going 22 times, but now it's about 12.

thank you,

Post Edited (Salamore) : 2/20/2012 8:19:31 AM (GMT-7)

Posted 2/20/2012 3:05 PM (GMT 0)
How long have you been on prednisone? In my case, I'd been on it most of the time for the past year, and they wanted me to taper down from 40 mg to 20 mg before surgery. I did that taper in two weeks, which was rough, but like you, I wanted to have surgery as soon as possible. Prenisone makes healing take longer and makes some complications more serious (I had an abscess a week after I got home, and my surgeon came in at 10:30 at night to drain it -- if I hadn't been on all that pred, she would have waited until the morning).

You don't have to wait for your colon to calm down, though.... if you could do that, then you might not need surgery at all!

One thing that I and others on this forum have experienced is that once the surgery was booked, our gi symptoms got better. I started having formed stool for the first time in years -- it was crazy.... kind of like my colon's last gasp to get me to keep it..... I think it was the stress relief of having a plan mixed in w/not working.... knew if I went back to my regular life, that I'd be right back where I started.

Hope the appointment goes well. Keep us posted.
Posted 2/20/2012 3:17 PM (GMT 0)
When I had my surgery I was in a similar situation. Crazy Crohn's flare, 40mg prednisone, going 20+ times a day, couldn't eat, etc. I went in for a scope to check it out on a Tuesday, determined I needed surgery then, met with the surgeon the next Monday, and was scheduled for surgery the following Thursday. It was the longest 10 days ever to wait after the scope, but they didn't make me lower my pred or anything.
Posted 2/20/2012 3:24 PM (GMT 0)
Just to clarify, my surgeon would have done the surgery w/me on 40 mg of pred, but because I'd been on it for so long, my gi wanted me to go down.

Remember, a lot of people have emergency surgery -- so it's possible under any circumstances. The issue is balancing discomfort in waiting for surgery w/risk of complications after surgery.
Posted 2/20/2012 3:32 PM (GMT 0)
My doctors really wanted my colon to calm down before surgery. I was in the hospital extremely sick with a severe UC flare-up for two weeks and was declining quickly. All my regular maintenance drugs had stopped working and they had tried up to 80 mg of Prednisone with no luck. My doctors gave me the Remicade or surgery option. I knew I was done with UC after going through that nightmare and firmly decided I wanted surgery eventually. The doctors did have a general surgeon ready to do emergency surgery in case things didn't get better, but they really wanted to avoid surgery at that point because I was weak, on 60-80 mg of prednisone and my colon was in horrible shape. Also, they knew I was leaning towards a permanent ileostomy, and the surgeon would not remove my rectal stump when I was on such high levels of Prednisone due to the likelihood of complications, so I knew I would eventually have to go back in for another surgery to get it removed down the road. I much preferred to have everything done in one operation, including having my butt closed up. Therefore, I agreed to try Remicade to hopefully get me to a better place for the surgery outcome I wanted with a top-notch colorectal surgeon at another hospital that my GI highly recommended.

The Remicade did work and ended my flare in about 5 days. The plan was to aim for three infusions while tapering off Prednisone, and then wait several more weeks for the Remicade to leave my system and then get my surgery when I was in remission and not on any immune system altering drugs. I ended up having a horrible reaction to 1st infusion of Remicade though and all my future infusions were cancelled. Fortunately, that one infusion held me over for about a month and I was able to go into surgery in a fairly healthy state, with my colon much more healed and on only 30 mg of Prednisone.

My CR surgeon said he avoids doing surgery when people are in bad flares if at all possible because it makes things much more difficult. Had I slipped back into a flare while waiting for my surgery, he said we would have postponed the surgery and tried Humira to try to calm it down. Of course, if there is no possible way to get a flare under control, surgery will be scheduled when people are very sick and weak... it is just not ideal. Yes, it did feel weird to work to get my colon healed only to have it removed, but I knew by the history of my disease that it would only be a matter of time before I entered another flare. I knew I didn't want to take Remicade the rest of my life... and had a bad reaction to it anyway which ruled it out regardless. With Remicade off the table, what would happen if I fell into another dangerous uncontrollable flare? I would likely have to get emergency surgery when I was in a bad state. No thanks. I was done playing the UC game and taking risks with my health. I wanted my colon out of there. It has been the best decision I have ever made.

I am sure your surgeon will give you some thoughts as to what they want to do based on your situation. It is going to be different for everyone. Like Blueglass said, it is a balancing act between dealing with current symptoms versus complications etc.
Posted 2/20/2012 3:34 PM (GMT 0)
I went into my first surgery in a flare and on 40mg Prednisone. It's part of the reason why my j-pouch was done in three steps and not two, but they were able to take the colon out and do the ileo.
Posted 2/20/2012 3:34 PM (GMT 0)
They do not have to wait for you colon to calm down. But if the surgery involves a j-pouch, you will have to wait six months for the next operation.
Posted 2/20/2012 4:07 PM (GMT 0)

Salamore said...
Hi all,

As you may know I'm now dealing with refractory UC, I am in a major flare and have been out of work for about 3 weeks, Doctors have added so much medication to my cocktail nothing is working. This past Thursday they upped my pred to 40mgs, along with my azulfidine and cortenema, nada.

Can you tall tell me how long will it take for them to do surgery, do they have to wait for my colon to calm down or can they book me for an ileostomy right away.
I am very weak, tired and run down, going now about 12 times a day, nothing but watery diarrhea and some blood. I was going 22 times, but now it's about 12.

thank you,

I had refractory UC as well so I know how frustrating it is....nothing works. I was pretty sick going into surgery...full on flare.... so you shouldn't have to wait. I only waited two weeks from the time I had the consult with my surgeon to the operating table. I can tell you even through the post op pain, I felt SO much better getting that diseased colon out of my body.

If you are getting a jpouch your time line will depend on how many steps you are having it done in. I had two step surgery so I had the colectomy and the creation of the j pouch done at the same time. Then 3 months later I had the take-down surgery (ileostomy reversal). So from start to finish was only 3 months for me. At the time I wasn't working but if I was I could have gone back to work in between surgeries. All the best to you.
Posted 2/20/2012 5:10 PM (GMT 0)
I had consulted with my surgeon about havin my colon out and was on 40mg of prednisone. I was in surgury by the next week and had tapered down to 10mg.

Also I did not have to wait 6 months for my j-pouch. I had my second surgury by October. It was a rough road but I finally feel good.
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