March 31, 2023
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Some people living with Crohn’s or ulcerative colitis may need surgery to remove their colon and rectum. It sounds scary but may vastly improve your quality of life.
So a doctor mentioned you may be a candidate for a proctocolectomy and now you’re scared and have tons of questions. What is the procedure like? How will it affect your lifestyle? How will you take care of the site and the bag?
First, take a deep breath and know that if a doctor suggested this procedure, they think it will improve your life.
A proctocolectomy can help treat inflammatory bowel disease (IBD) — whether you have Crohn’s disease or ulcerative colitis (UC) — when other treatments haven’t worked.
That means the pain, discomfort, and other issues that IBD may cause you might go away.
While, yes, you’ll have to adjust to a new way of relieving your bowels, you may start to see that the benefits outweigh the drawbacks of this new reality. And depending on the exact type of procedure you have, you may only need to deal with an ostomy bag for a few weeks or months.
Plain and simple, a proctocolectomy is a procedure to remove the colon and rectum. It may be done as an open surgery or laparoscopically.
Open surgery is more invasive, needs a bigger incision, and has a longer recovery time.
A laparoscopic procedure involves smaller incisions and the use of cameras to perform the operation. It is less invasive, which means you’ll recover faster compared with open surgery.
Open surgery can permit greater access to internal organs and may be a better (and less expensive) option in some cases. Be sure to discuss any concerns about which procedure is best for you with your physician.
You may be worried about the surgery itself and what happens once the doctor removes your colon and rectum (the proctocolectomy part). Well, there are two main options here, each of which requires an additional procedure.
Your surgeon will perform either an ileostomy or an ileal pouch-anal anastomosis. The type of surgery you will get largely depends on how strong your anal muscles are. If they are too weak, a doctor may be more likely to recommend a proctocolectomy with ileostomy.
That’s a lot. Let’s break it down a bit.
A proctocolectomy with ileostomy means that your surgeon will remove your colon and rectum (together, part of the large intestine), and then cut a small hole in your abdomen.
They will use this hole (known medically as a stoma) to pull the ileum, or the end of your small intestine, partly outside of your body.
They will then attach an ostomy pouch to your skin around the opening. Your small intestine will automatically empty waste into the bag.
The pouch is generally discreet and should not smell at all, so you should be able to resume most activities without anyone even knowing it’s there. And since you won’t have the severe symptoms associated with IBD, you might even find you enjoy going out more again.
A proctocolectomy with ileal pouch-anal anastomosis — also known as J-pouch surgery — is another option. After your surgeon removes your colon and rectum, they will then take the end of the small intestine and make a pouch out of it that resembles the shape of the letter “J” inside the body.
This surgery is often done in two separate procedures. Before fully connecting the J-pouch to the rest of the intestines, your surgeon will typically create a temporary hole where your poop will come out into the ostomy pouch while you are healing from the proctocolectomy.
Once you fully heal in about 2 to 3 months, your surgeon will perform another surgery to close the temporary opening and connect the J-pouch inside the body to the rest of the intestines. You’ll now poop as you did before surgery, using the J-pouch as a new “colon.”
Unless you need emergency surgery, someone at your doctor’s office will most likely schedule your procedure several weeks in advance.
During this time, follow the instructions from the doctor or surgeon who is going to be performing the procedure. Instructions may vary but will include directions for things like when to stop eating solid foods prior to the surgery, and what liquids you can consume.
Be sure to ask your doctors:
It’s a good idea to check with your insurance company to see if they cover the procedure, what your out-of-pocket costs might be, and to ensure your doctor, surgeon, and hospital are in-network before the procedure. This can help prevent unexpected bills down the road.
If you don’t have insurance, you may want to talk with the facility and doctors who are doing the procedure to see about costs. They may be able to steer you toward programs that can help cover the costs.
According to research in 2010:
However, the researchers found that the costs of direct care for people in the two years after these surgeries decreased by an average of $9,296 and $12,529, respectively.
On the day of the procedure, you’ll have to arrive at the hospital a few hours early to get prepped for surgery.
Once ready, the treatment team will wheel you into the operating room and inject medication into an IV to put you into a deep sleep. This will stop you from feeling any pain or discomfort while they operate.
Once you are out, the doctor will either make a larger cut in your abdomen (open surgery) or several smaller cuts in the abdomen (laparoscopic).
In either case, they use the openings to cut away and remove your colon and rectum. They will then create an opening in your side to pull the small intestine through.
If they are doing a J-pouch surgery, they will create the J-pouch but you will still use an ostomy bag for a while as you heal. You will have to come back in a few weeks to have the pouch sealed and the J-pouch connected to the rest of the intestines.
After your incision is stitched up, you will wake up in the recovery room. You’ll probably feel groggy and may be in some pain or discomfort.
You’ll need a few days in the hospital to recover before they send you home. Staff will watch you for signs of side effects and complications, such as reactions to the anesthesia, infections at the incision sites, proctitis, or other issues that may come up.
While you’re in the hospital, someone will also teach you how to care for your ostomy bag and what signs of a problem with it are.
Life will be a bit different after you’ve had your proctocolectomy, but it should start feeling a lot better!
At least at first, you’ll need to manage the stoma and ostomy pouch. This means you’ll need to keep it clean and dry and change your bag about 1 to 2 times per day.
You should be able to return to your typical daily activities, including exercise, within a few weeks following the procedure.
Most people find that after their proctocolectomy, their overall quality of life greatly improves. A proctocolectomy provides a curative effect to IBD, meaning you won’t have symptoms anymore or have to take medications.
And as an added bonus, even if the surgery is not a complete success and you find your quality of life does not improve, you will still have a lower risk of developing complications related to UC.
If you need some inspiration, these social media influencers are killing it while living with an ostomy bag, and they love to share their stories. They’ll tell you — from firsthand experience — all the nitty gritty details of living with a stoma, tips for taking care of it, what sex is like, and more.
Here are their tags:
Once your doctors remove that troublesome colon and rectum, you’ll feel relief from your IBD symptoms because the offending tissue will be gone. You’ll also be at a lower risk for certain cancers and other complications that go along with IBD.
You may have heard that having the procedure lowers your chances of having a baby. The truth is, we really don’t know yet.
A 2019 review of research suggests that women may experience reduced fertility after IBD surgery, especially when performed laparoscopically. They may also have risks of other complications like miscarriage and low birth weight. However, most of the existing studies were flawed, and more research is needed.
If having a family is a priority for you, be sure to discuss your concerns with your doctor before having a proctocolectomy.
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