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3 stage proctocolectomy

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Ulcerative Colitis
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Posted 9/6/2013 6:35 AM (GMT 0)
Hello, how many have gone through 3 surgeries and have positive and helpful information to share regarding recovery, diet in between surgery, activity restrictions, etc? Thank you to all.
Posted 9/6/2013 12:15 PM (GMT 0)
I had two surgeries not three but if there is one bit of advice I can give you it would to have a lot of patience with all the steps. It can be pretty trying at times and you may feel a little depressed during the whole process. I cried a lot! But here I am today to tell you it was all worth it. :)

I didn't have any diet restrictions after my colon was out. That was the best part! I could eat again and not be in pain! After the final surgery (takedown) I went slow with foods for a bit until my body adjusted to it's new plumbing. For me it didn't take long at all.

Since I had a two step procedure, my recovery was a bit rough since that involved the proctocolectomy and j pouch creation all at once. I was in the hospital for 10 days and it took me a good 4 weeks to feel human again. I also had an abscess develop in my pelvic area that needed to be drained. Not fun but it all turned out fine in the end. That's where the patience comes in...sometimes things happen and we have no control over it. Plan for the best but expect complications just in case. I had no complications with the takedown surgery. That one went very smooth and recovery was a breeze. I think I paid my dues with the first surgery!

Do you have yours scheduled yet?
Posted 9/6/2013 12:32 PM (GMT 0)
Thank you.  It's on the books for 10/14.  I was floored when my 2nd opinion said it had to be done in 3 stages; HUGE difference from what the first surgeon said...but I know the first was an ass and trust the one I've chosen with my life.  I'll waffle back and forth until I'm sedated, but for now...10/14 is the first, early to mid January is the 2nd, and April is the 3rd...barring any complications.  Maybe I'll be an amazingly quick healer and it will all be faster than is planned :)
Posted 9/6/2013 1:12 PM (GMT 0)
It sounds overwhelming, but with a history of prednisone use it's probably the safest route for a better outcome. Like Marianne said, be patient with the process. Recovery will be easier because you won't be sick anymore but it can be frustrating; two steps forward, one step backwards.

Sue
Posted 9/6/2013 1:13 PM (GMT 0)
Thanks, Sue. That's exactly what the surgeon said; b/c I've been on prednisone for more than 1.5 years, she doesn't think it would be at all safe to do this in 2...

Thanks again.
Posted 9/6/2013 2:15 PM (GMT 0)
Twinsmama, there is another board here specifically for ostomies. We have a few members on the UC board who have been through it and can offer great information but you will find the majority of people who have had surgery are on the ostomy board. I haven't been through it but I have seen a lot of members have surgery and I haven't seen many with regrets.
Posted 9/6/2013 3:37 PM (GMT 0)
Hi TM, I had three stages, you can see the dates in my signature (my takedown was a little over five weeks ago). I'm typing this to you from my desk at work! I was back at work six weeks after Steps 1 and 2 and four weeks after takedown.

I agree that with the prednisone use three steps is the way to go. I'm sooo glad I did three steps. Step 2 knocked me on my ass even though I felt very good and healthy going into it (I had 15 weeks after Step 1 to re-gain weight, get off ALL the meds, etc). I was in the hospital for five days after Step 1, six days after Step 2, and four days after takedown.

I took a long time to expand my diet slowly after Step 1, mainly because I was on a very limited diet when I was sick with UC (boiled chicken, white bread/rice/pasta, eggs... nothing else really). Once I got over the mental block and did all my trial and error, I found I was able to eat pretty much anything I wanted. Likewise with the j-pouch my diet is very broad. I don't eat as many vegetables as I would like to because I'm still healing and the fiber can be an irritant but I'm confident I'll be able to work up to it.

I think you mentioned you've had a C or abd surgery in the past so I think you probably won't be too surprised with the aftermath from that/activity restriction. I'm sure that with lots of healing time you can be strong and unrestricted with an ostomy, but I really didn't feel any strength in my abs until after my reversal. For example, I needed to use my elbows to sit down or lay back in bed. On the other hand, I was able to jog and ride my bike, so I guess I wasn't THAT out of it, either.

I wrote a lot about the aftermaths of step 1 and 2 in my blog which is linked below in my sig, hopefully that is helpful, but if you have any other questions just ask, I am happy to share :)
Posted 9/6/2013 3:44 PM (GMT 0)
Thank you, Liz. I'm so happy you're done and back in the world! I hope I'm as resilient as you, although I'm not as young (33). I'll definitely check out your blog! Here's to a long road ahead that will provide me with the QOL I've been missing for 2 years!
Posted 9/6/2013 3:53 PM (GMT 0)
Oh my gosh, 33, you're a baby! Please, people get these surgeries in their *70s*. You and I might as well be the same! As my doctor friend says "Anyone in the hospital under 60 is 'young' and anyone under 70 is 'not old'".
Posted 9/6/2013 4:55 PM (GMT 0)
I wish I was 33 again!! That's young in my book! I was 41 when I had my surgeries 3 years ago. My surgeon was amazed how fast I bounced back from the abscess complication. You will do great! Positive thoughts!
Posted 9/6/2013 4:57 PM (GMT 0)
Thank you all so much! I am feeling relieved, slightly, knowing that in 6 months(ish) I'll be a healthier and happier person!
Posted 9/6/2013 5:55 PM (GMT 0)
I'm have my first consultation on the 17th, and I can probably have surgery before the end of the month per the surgeon's secretary. I'm in pretty bad shape right now and I'm sure that I'll have to go for 3 surgeries. I'm actually looking forward to getting this over with because this flare is not going away and I've tried almost every medicine available. I haven't meet the surgeon yet but he's one of the top colo-rectal surgeons for J-pouches in NYC so I'm pretty comfortable that I'll be using him.

I have no illusions that this will be easy but I can't imagine it being much more difficult than UC, all the nasty flares, and hospitalizations that I've had over the years. At least there may be a good out come with some more certainty in my life after the surgeries, I think you are looking for that too.
Posted 9/6/2013 7:44 PM (GMT 0)
I'm 41 and had all three surgeries in a 6 month time frame (all in my signature) - I told the doc I wanted to move forward at the earliest safest point so I could just take all my time off work at once. And
I am now back and work and feeling great 6 weeks post takedown!
Posted 9/6/2013 7:47 PM (GMT 0)
Liz, you described a lovely appliance after your 2nd surgery in your blog. Does everyone have the pleasure of using this or is it case by case? Stage 2 is what's really scaring me now...
Posted 9/6/2013 9:19 PM (GMT 0)
HA sorry it took me a minute to figure what you were talking about :) My understanding is that it's NOT very common. Every surgeon has a different procedure. My surgeon said that the j-pouch is very delicate in the first few days after it's constructed and there's a risk of damaging it if you left it drain on its own, so it's better to use a tube with a foley bag. It was also a bit easier for me because it was really hard for me to get in and out of bed, and having the tube protected me from needing to do so to empty drainage from the healing j-pouch (for the first week or so after surgery there's quite a bit of stuff - mucus and blood and random liquid - that has to come out).

One way or another step 2 sucks, but it still only took a few weeks to feel back to normal.
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