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Very ANXIOUSGetting Colon removed Having 3 surgeries to get J pouch

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Ulcerative Colitis
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Posted 10/24/2013 1:58 AM (GMT 0)
Hi everyone Im very nervous about getting surgery in about a month in a half from today I will be getting my entire large intestine removed and 3 months later I will have another surgery to make the J pouch finally 8weeks later will no longer have ostomy. I wanted to find out from you guys who have gone through the same. Is there anything I should expect that no one told you about but experienced after surgery? Is the ostomy bags hard to maintain? Do they fall off pretty easily? How long after surgery did you feel ok to go back to work?? Any tricks to keep ostomy from falling or leaking I really want to go back to work asapsince im the only income for myself and my toddler. How long is it to fully recover from first to last surgery? Do you have diarrhea with the J pouch? any accidents?? How about any diet restrictions?? Sorry for all the questions :/ super stressed I tried remicade double dose monthly and slowly losing effect . Thanks in advance :)))

Diagnosed with UC after giving birth to my son 2009 completely healthy prior to pregnancy
Posted 10/24/2013 2:56 AM (GMT 0)
Wow so many questions!

OK yes so I had three surgeries. I am doing very well now. The ostomy bags are hard to deal with at first but you will learn quickly and then it is not that bad. They do NOT fall off that easily. I wore mine for four or sometimes five days at a time, even in the shower, exercising, etc. No problem.

I went back to work six weeks after the first two surgeries and three weeks after the last surgery.

I wouldn't consider myself "fully recovered" so I can't say. Don't be alarmed... I'm able to do just about everything I want to, but I still get tired pretty easily and am getting used to my j-pouch. I've heard from others that it can take a full year after the last surgery to really feel COMPLETELY back to normal. I'm not worried, I just sleep a little more than I used to :)

Most of my BMs with the j-pouch are what a normal coloned person would call "diarrhea," but there's no cramping, urgency, pain, etc. It just comes out, honestly it is almost like peeing liquid stool out of your butt most of the time (sorry for that weird mental image). I had one accident in my sleep right after surgery but not since then. It's normal to have accidents at the very beginning but rare for it to continue long term.

I wrote a lot about the whole process in my blog (link in sig) so I would recommend reading that if you want to know all about everything. There's also j-pouch.org forums which are very active, and the Ostomies board on HW has more people with ostomies and j-pouches.

Good luck!
Posted 10/24/2013 3:06 AM (GMT 0)
The one thing many people don't expect is to have rectal output. You can have the output after stages 1 or 2 (and obviously 3). It can be mucous and/or blood.

I've only had the first step and I was in bad shape before surgery so I don't know if I'm the best case for timeline. But expect four week off at a minimum. The second surgery is supposed to be a bit harder on your body.
Posted 10/24/2013 12:16 PM (GMT 0)
Thank you so much for your helpful replys!! Im praying everything turns out smoothly .. Can you eat pretty much everything??? The tiredness part scares because I was told I would feel the oposite :( I am a single mother with a special needs toddler so I need all the energy I can get
Posted 10/24/2013 5:19 PM (GMT 0)
I'm going next week for my 1st surgery (3-step J-pouch) so I don't have any advice from experience but I'm looking forward to being healthy again and being able to live my life without medications or flares. I know that the surgery won't be easy for me but it is definitely worth it to have some more control of my life, I've been battling this flare for over a year, I am just done with UC and need to move on with my life.

I'm using the same surgeon as Pluot, he is very well respected and has done many hundreds of these J-pouch surgeries; I'd recommend using a surgeon with lots of experience with j-pouch surgeries.

The other thing I noticed in your post is that you have a toddler; I was told during my pre-op meeting that I should not lift anything weighing more than 15lbs for about 6 weeks after surgery and we all know that toddlers are a handful. I should be able to drive after discontinuing pain-killers and do other normal things soon after I return home from the hospital. They are telling me to expect to be in the hospital for 5-7 days for the first surgery.

To me getting my colon removed is the most important thing and moving on with my life, I am prepared to deal with all the other issues (pain and inconveniences) that may come along due to the surgeries but I look at those as temporary and my J-pouch will hopefully be a permanent good thing for me because living with this defective colon is not a good thing for me.
Posted 10/24/2013 11:30 PM (GMT 0)
Oh Wow! Good luck on your sugery may you have a speedy recover! My surgeon is farely young but my G.I. Highley recommends her and after my consultation I feel comfortable. Ive never had any kind of surgery in my life so im quite nervous
Posted 10/25/2013 2:16 AM (GMT 0)
24UC,

I've never had surgery before either but I know that it's best for me right now, I need to get healthy again.

I was talking with my primary care doctor this Summer (he is also a GI that does mainly C-scopes but not severe IBD cases) and I asked him about how all his patients with j-pouches and if they liked their j-pouches. He told me that all his UC patients were very happy with their J-pouches but it was his patients that needed their colons removed for other reasons like cancer, polyps and other reasons due to higher frequency output than they were used to that were not as happy with their J-pouches. My surgeon said that I should probably expect 5-6 BMs a day on average without the urgency. I'm looking forward to that, this flare is wearing me out.
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