Three Step Surgery at Cleveland Clinic?

I had a two step, but my only meds were steroids and sulfa back then. I was on high dose IV steroids and IV TPN (nutrition) to try to knock it into remission, but it didn't work. I was very UC sick but not emergently sick. I fared just fine with a two step, even faced with all those steroids on board, but I was 19 and think that youth and my overall other health and lack of co-morbidities is what made him decide a two step was good for me then.

I believe what this really boils down to is surgeon preference and your overall state of health of course. I was on Remicade up to surgery and my surgeon did a two step on me. I was not on any prednisone for a long time. He felt I was a candidate for a two step and I trusted him. I was fine. I did have one complication...an abscess developed in my pelvic area. But it was addressed and it healed quickly. That could have happened in a 3 step procedure too.

Why are you going to Cleveland for surgery? California has some excellent CR surgeons.

Sue

Second Sue! There's a fantastic j-pouch surgeon at UCSF whose name escapes me, she did bootstrap's j-pouch...

I consulted two surgeons here in NYC (no need to go to CC from here either for a first pouch), and both wanted me to have three steps. I was on 40+ mg of prednisone for two months at the time of surgery as well as double dose (10 mg/kg) Remicade.

UCWarrior2010 here had a two step surgery despite having been recently on vedolizumab. He isn't around as much anymore (I think he's very happy!) but you could try sending him a PM.

The benefit of a three step is that you can use the time after step 1 to wean off of all or most of your meds, and then be med free at the time of the j-pouch construction and rectum removal (trickier and more taxing surgery than abdominal colectomy). The downside, aside from the hassle of having three surgeries instead of two, is that each additional surgery can cause more scar tissue/adhesions. Adhesions can contribute to infertility in women by blocking fallopian tubes, or blockage and abdominal pain in the future by wrapping around the small intestine.

I don't think surgeons are amenable to being "convinced" one way or the other. If you feel strongly that a two step is right for you, you shouldn't be hesitant to consult with a few different surgeons to see if any think two steps is right for you.

I had a two step and should have had a 3. I too was not so sick and had not been on steroids for over 6 months. Because the surgeon did not realize I needed the 3 he severed my ureter and cut a hole from my jpouch to my vagina. Had I had a 3 stage surgery this would not have happened. I have had over 20 surgeries to repair the fistula the surgeon created. A year ago I had a complete redo in Cleveland with Dr. Remzi. Go for the 3 stage, it's worth it. I wish I did.

How did these complications necessitate a 3 step rather than 2 step? These sound like poor surgical technique or errors in surgical technique vs a need for 3 steps (such as needing 3 steps to get "well" if so sick before building the J pouch).

Unless I am missing something or not knowing a vital piece of info, slicing someone's ureter is not normal practice whether one, two, or three step.

no kidding it's not normal. The plan was to take out my colon and create a jpouch. The surgeon did not scope me first and as he said "did not anticipate the amount of disease." The tissue was very friable and he had lots of problems sewing it together. The 9 hour surgery was on a Monday and on Wednesday I had a 3 hour surgery to repair the ureter. I was in the hospital for 11 days and went home with a 10 inch stent for 6 weeks. I was in lots of pain for all those weeks and that was just due to the stent. As soon as it came out I felt fine. Now the only problem was the mucous coming out of my vagina due to the surgical fistula. After several attempts from my bottom and several major surgeries it still did not heal. The surgeons thought it was healed a couple of times and I even had takedown twice. Both times for less than 24 hours, as the repair immediately opened. I finally had a complete redo 14 months ago. Needless to say this has been a complete nightmare for me and my family. Still haven't had takedown. Hoping for 3 times a charm and not 3 strikes.

So sorry to hear of those issues.

I had a friable diseased colon, too, and was in surgery from 5am call time to 8pm, when I rolled out of PAR... It was an open surgery. My family was about ready to explode, waiting that long for me to come out! But I had a pretty uneventful post op, but for an ileus.

Where do they start surgery at 5am?

I had to report to the hospital at 5am in San Diego for each of my planned operations to build my J-Pouch.

And then the surgeon shows up at 7am.

exactly, but no surgery starts at 5am. And, I never get there 2 hours in advance. One hour is plenty. I don't care what they say. they are never ahead of schedule.

I think the timing thing all depends on the hospital. I've had it take an hour just to get out of the admitting office, if there are a lot of people checking in. They also sometimes rearrange the schedule based on what is going on in the other operating rooms, with the surgeons, or if patients are no-shows. But, the earliest I've had to show up was 6 a.m., which was plenty early for me (not that I sleep well before surgery anyway)!

Jan

Thanks all - I read that they leave the rectum and anal area all in tact after step 1 of 3 and that the rectum and anal area actually heals up between steep 1 and step 2? Is this true? My rectum and anal area are in pretty bad shape right now.

pkitty yes thats exactly what they do. Generally if people are very sick, they don't want to do that in step 1 because it would make a longer surgery.

Also CC does have 5:30AM scheduling (for a 7AM surgeyr). And if you are not there close to that time... you will not get operated on! There are lots of things that need done prior first to being knocked out in the OR. And at CC at least, they are usually very much on time for the first one or two ops in the morning.

I wonder how that works though - the immune system stops attacking the rectum and anus because the colon is gone? I know Jan mentioned this to me but it is still kinda confusing to me. UC is an autoimmune disease so why does it just stop attacking the rectum and anal area once the colon is gone?

My UC was absolutely horrible in my rectum and I haven't had a stitch of trouble since surgery. Having an awesome surgeon is so key in this procedure.

If you get a 3 step procedure your rectum can still continue to flare until it's removed in that second step. I had a two step so my rectum was removed in the first step.

At the CC I also get there no earlier than 1 hour prior to the surgery, even if it's scheduled to be the first one.

I had the three step procedure at Cleveland Clinic. The first surgery they removed my large intestine and created the ileostomy. The second surgery they created my j-pouch, removed my rectum, and gave me a loop ileostomy. The third was the takedown. The second surgery is definitely the hardest but it was worth it! Cleveland Clinic saved my life. They are wonderful!

Anal inflammation is NOT typical with UC. Peri-anal disease is often a sign of Crohn's, much like fistulating disease.

The rectum is almost always involved with UC though, which is why cuffitis is possible in the 1-2cm cuff.

I had spontaneous remission in my rectum for about a month after step 1 (of 3), but after that I developed pretty severe proctitis in the rectum which continued until step 2 when the rest of the rectum (except for the 1-2 cm cuff) was removed. So in addition to dealing with ileostomy output, I had blood and mucus discharge from the rectum multiple times per day, sometimes urgently, along with fevers and other flare symptoms. It sucked!

Anyway... Again the inflammation in the rectum was quiet for a few weeks after step 2, but around 3 weeks post-op I started to see traces of blood in the mucus discharge from my j-pouch. I've been scoped and my surgeon says he can see some slight inflammation around the anastomosis, but that in his experience this level of inflammation wouldn't cause symptoms after takedown. We'll see!

I think that this is one of those times when you need to have a frank discussion with your doctor and find out whether or not there is perianal disease. You cannot rely solely on what a report said, since doctors tend to write in standard phrases so it is meaningful to them and not necessarily to their patients. When the report states there is disease in the mucosa from the anal verge onward, you cannot assume it also means the anal canal.

Perianal disease is an indicator of Crohn's (although not diagnostic), so it is important to know what it all means.

Jan

Liz - Why do you say anal inflammation is not typical with UC? Jan sent me the below link - it says in the UC section that anal inflammation is common with UC. Have you been told differently from your doctor?

Jan - agreed - gotta find out if they think I have perianal disease - I hope not.

http://www.gastrohep.com/ebook...book=1405120800&id=8

Now that I'm reading more I think I have my terminology confused. I was always told by doctors that in UC the inflammation doesn't start until the rectum, and the anus is clear. Based on the link from Jan, it seems like the actual "line of demarcation" is at the anal verge, and perianal disease refers to inflammation in the area *near* the anus.

More confused than ever to be honest!

Yeah it's all confusing. But, I think, as you said Liz, the inflammation typically begins at the anal verge and goes up. But, Jan made a really good point that the mucosa is different in the anal canal so the nature of the inflammation is different there and the doctor when saying anal verge and up might just be saying that it begins there to mean that all rectal muscoa is inflammed. Sorry if this is even more confusing.

As for perianal disease, I don't think it really means inflammation. I think perianal disease is like fissures, fistulas in the anus, elephant ear skin tags in the anus, etc.

Anyways, this is my understanding.

quote:

I think perianal disease is like fissures, fistulas in the anus, elephant ear skin tags in the anus, etc.

Definitely, that's my understanding too. I was going to say something like this but I figured I had put my foot in my mouth enough times for one night

I was hospitalized for 2.5 weeks prior to surgery. I was already there, as an inpatient. That was likely why I had such an early start time.

MY 5am start wasn't surgery starting RIGHT AT THAT TIME, but my preop meds, my labs, and trip to preop holding was between 5-6am. Anesthesia started with me around 6:30am, and surgery started around 7am. I spent about 3 hours in postop recovery before being wheeled to my room very late in the day.

I work in a teaching hospital, too, and yes, preop things for inpatients like i was can start around 5am, depending on the surgery and surgeon. Doesnt mean they're cutting you AT 5am.

Also, for my recent dilations, I had to be there at 6am, no exceptions, and that was for a same day procedure without much preop time.

I guess I count surgery time as the actual surgery. Also, I never let them give me anesthesia or even any type of IV until I am in the operating room. There's no way I sit with an IV waiting to be taken in. If there is a delay of any kind and usually there is, a patient could be sitting with an IV for hours. And, as far as being in the recovery room, my parents are always there. Unfortunately, I have way too much experience.

Rachel, since you were already in the hospital once you must have already had the IV.

I am having the 3 step at the Clinic as well. My surgeon also said that is what he prefers. I am in between step two and three and just waiting on the takedown. I have spoken to a number of people that had the 2 step that were in the hospital for many days. After my first surery I was released in 3 days, after the second surgery I was released in 3 days and the surgeon said the same should happen after the takedown. Many of the 2 steppers that I have spoken to were in the hospital for up to three weeks after step 1 waiting for the shock to their intrestines to subside and the bowels wake up again. I am sure the three step is easier on the body. Don't rush it do what they say. Other than the Mayo Clinic the CC is second to none. Not only the surgeons but the overall care during your stay is quite impressive.

Mike H