subtotal colectomy with ileorectal anastomosis

Hi All,

I am new to this forum and am looking for some info and hoping to meet a lot of awesome people too

I am a 43 yr old woman who was first diagnosed with Crohn's disease in 2004 and have been in remission for 3 yrs. My last colonoscopy, which was in Jan of 2012, showed low grade dysplasia and a few polyps were removed which were precancerous. My GI recommends I have a subtotal colectomy with ileorectal anastomosis. I am in the process of getting a 2nd opinion, but would really like to get any info I can on this procedure and how it has affected people's quality of life. I know every situation/person is different, but I would like any info anyone is willing to share with me. I do believe the procedure will be done laparoscopically.

* Recovery
* Traveling
* # of BM's a day
* Complications
* Diet

If I may ask, why does your GI recommend the surgery?
Is he worried about the cancer developing and spreading?

You'll find a lot of people on the forums here who have or are going to get an ileoanal anastomosis (called a J pouch). It's a similar surgery, but instead of keeping their rectum, as you would with your ileorectal anastomosis (IRA), they have their rectum removed and get a 'new rectum' made out of the end of the small intestine.

Most people get a J pouch due to UC or Chrons colitis. But I've seen a few asking about the IRA version. I believe they had colonic inertia or FAP.

With either procedure, you'll expect a major surgery. Did your GI say how many steps the surgery would be? A J pouch needs to be performed in at least 2 but I feel like a IRA might be just 1.

As for recovery: A colectomy is a very major surgery. You should expect a hospital stay of about a week with severe pain for the first few days. You'll be sent home once you can manage a soft foods diet & take oral pain meds. You'll need the oral pain meds for another few weeks. Most people take 6-8 weeks off of work.

As for traveling: there is no reason that you can't travel with an ostomy, Jpouch, or IRA! If you receive a temporary ostomy, just keep supplies on you. Once you have the Jpouch or IRA, just make sure you have access to a restroom as you'll need it every few hours.

As for # of BMs: Those who get the J pouch due to UC have several loose bowel movements per day - about 6-8 is the norm. But there is no pain, no urgency, no risk of colon cancer. Those with FAP or inertia who get an IRA have slightly less frequency - maybe 5-6 - as the rectum already knows how to hold waste and absorb water.

As for complications: obstruction is one of the most common types. Your intestines are moved around during surgery so they might kink strangely or food might get stuck in them. Obstructions can be very painful, but most pass on their own, and many people never have one. Just take your diet slowly and you should be fine. You may also have adhesions - a sort of internal scar tissue. But the risk of those is MUCH higher with an open surgery, much lower with laparoscopic. Adhesions may cause obstructions.

As for diet: Since you have Chrons, removing your colon alone may not relieve all of your symptoms, as the Chrons could still affect your small intestines. I don't know much about Chrons & diet, just UC and diet, or surgery and diet, so you'll have to hope someone else can answer you here. D; Generally, for 6 weeks after surgery you should follow a soft, low-residue diet, to go easy on your intestines and allow them to heal. This basically means no raw veggies, nuts, seeds, peels, or skins. After 6 weeks you can begin to re-introduce them slowly.

Right now I am about 10 weeks from my colectomy, I have an ostomy, and I can eat whatever I like :3

If I were you I'd keep a very close eye on your colon as you said you had precancerous polyps. As soon as you receive any sign that it is worsening, I'd get it OUT and out fast. Chrons is hard enough to deal with, without cancer coming into play too.

theresas post was great...i cant add much to it except for to tell you my specific experience.

i hvae a j-pouch...did the surgery three part....first surgery was emergency adn i was very sick going into it, and i was out of work recovering for about 8 weeks....but thats not 8 weeks of misery by any means...there was consistent measurable progress...its simply adjusting to teh ostomy, adn recovering from the surgery....

2nd surgery, i was out exactly 4 weeks recovering, and it was maily just being tired....and adjusting to teh stoma change (in three part, after first part its an end ileostomy, after 2nd its a loop, and more difficult to manage)...

3rd surgery i had about 4 weeks ago.....and this is a very different experience for everyone.....me personally, im dealing with gas problems when trying to sleep, and multiple bms, primarily at night, causing some sleep difficulties, and it has been a challenge adjusting....BUT everyone is different. i know people on this board and jpouch boards that were good to go only a week after.....

as everyone will tell you, on the boards you may run into people having problems, but thast generally why they are here....there is an overwhelming amount of success with this surgery and satisfaction with it, but none of them want to run on the internet find boards, and brag lol.

I have a jpouch due to UC so my results are a bit different than yours will be. The main difference is that your frequency will be lower than mine, which is a good thing!

Recovery for me was about a full year but my surgery was more invasive and I was sick going into surgery. This was not a year on the couch, I went back to work 3 weeks after surgery.

Diet, I have no special diet. I eat everything and especially fresh fruit because I like it. You shouldn't have any restrictions.

Travel, I have hiked 200 miles across England and 100 miles each in Ireland, Scotland, and Wales. I have hiked in and out of the Grand Canyon in 107 degree heat, traveled to the Middle East, Europe, Patagonia, Argentina, Myanmar, Vietnam, Cambodia, Singapore, and a host of other countries. I have hiked almost the entire John Muir trail in the Sierras and backpacked. In other words, surgery gave me my travel life back!

Sue

Thank you all for sharing your experiences with me. It means a lot! I have seen 2 colorectal surgeons and they both said this would be my best option and the one doing the surgery is the best around here and I have a good feeling about her! She is very confident in her demeanor and about her performance as a surgeon! Yes I will get to keep a healthy small intestine and hopefully my rectum. I am having a biopsy on my rectum next week to see if its ok to keep and do the IRA. I am praying it is.
I am so glad to hear some of you have gotten your lifew back and are doing so amazing after your surgeries. It gives me great hope, ty :)