Surgery is one of the many treatment options available for people with ulcerative colitis (UC). However, not everyone with this condition will need surgery.
Some people may try less invasive treatments first and then have surgery later if the disease progresses.
You may be able to manage UC through medication and changes to your diet. Over time, the initial treatments your doctor prescribed may no longer work, or they may become less effective.
The symptoms and complications of UC could become so severe that you need to explore a different treatment option.
Most people with UC will be able to treat the disease in other less invasive ways before surgery is necessary. Surgery is rarely the first option.
In a 2018 study of Swiss people with UC, researchers found that 9.2 percent of the study participants eventually underwent colectomy (colon removal). They also found that:
- 5 years after diagnosis, 4.1 percent of people had received a colectomy
- 10 years after diagnosis, 6.4 percent of people had received a colectomy
- 15 years after diagnosis, 10.4 percent of people had received a colectomy
- 20 years after diagnosis, 14.4 percent of people had received a colectomy
Most people had their colectomies performed within 10 years of being diagnosed. Surgery rates for people who’d lived with UC for at least 15 years were significantly lower than rates for people who’d been diagnosed more recently.
After having UC surgery, your doctor will need to create a way for your body to eliminate waste.
A procedure known as an ileostomy can help. In an ileostomy, your ileum (the final section of the small intestine) is connected to your abdominal wall.
You’ll need a stoma as part of the procedure. A stoma is a surgically created opening that allows waste from your intestines to exit your body. A stoma is typically made in the lower abdomen, just below the waist.
What to expect
Before an ileostomy, your surgeon must perform a proctocolectomy, or rectum and colon removal. They’ll perform the ileostomy in the hospital, and you’ll receive general anesthesia.
Following the ileostomy, you’ll need to wear an ostomy bag, an external pouch that catches body waste. This may be uncomfortable for some people.
Unless you get your ileostomy reversed, you’ll have to wear the ostomy bag for the rest of your life.
Proctocolectomy is the most common type of UC surgery.
A proctocolectomy is performed in the hospital as an inpatient operation. This means you’ll stay in the hospital during the procedure and for part of your recovery. You’ll need to receive general anesthesia.
After you have a proctocolectomy, you’ll also need an ileostomy or an ileal pouch-anal anastomosis (IPAA) to help you eliminate waste.
In most cases, your doctor will conduct both procedures on the same day so you don’t have to have general anesthesia again.
In a total proctocolectomy, the anus is also removed.
Ileal pouch-anal anastomosis (IPAA) is sometimes called a J-pouch surgery. In this procedure, the ileum is converted into a pouch shaped like the letter “J.” The pouch is then connected to your anal canal.
IPAA is usually effective, but it hasn’t been around as long as ileostomy has. This means it may be more difficult to find a surgeon who can perform the procedure.
This procedure is typically performed in two or three stages over the course of 2 or 3 months. You may receive a temporary ileostomy while your pouch heals.
What to expect
As with the ileostomy, you’ll need a proctocolectomy before an IPAA. An IPAA is performed in a hospital, and you’ll receive general anesthesia.
The IPAA won’t function like a normal bowel and rectum at first. You may have bowel leakage for several weeks while you learn to control the internal pouch. Medications may help control the function of the pouch.
You may also experience pouchitis, or inflammation or irritation in the pouch. You may have to treat this continually.
If you’re planning to give birth to children in the future, talk with your doctor about this before the procedure. This procedure may lead to infertility in some people.
Another type of ileostomy is continent ileostomy, or K-pouch surgery. The K-pouch is also known as a Kock pouch, hence its name.
During this procedure, the end of your ileum is secured against the inside of your abdomen.
Unlike a traditional ileostomy, you don’t need to wear an ostomy bag. A K-pouch is also different from a J-pouch in that the ileum isn’t connected with the anus. Instead, a continent ileostomy relies on an internal humanmade valve that collects waste and prevents the waste from draining out.
When the K-pouch gets full, waste is removed via a catheter. You’ll need to use a stoma cover and drain the pouch often, at least a few times per day.
A K-pouch procedure may be preferable if you’ve had issues with an ostomy bag, such as skin irritation, or if you just don’t want to deal with an external waste bag.
However, due to the fact that continent ileostomy can only be performed when your bowels are healthy, this procedure is no longer as common as it once was.
DID YOU KNOW?
Other types of ulcerative colitis (UC) surgeries include the S-pouch surgery and the W-pouch surgery. However, they aren’t as effective or commonly performed.
If you have an ostomy bag from a traditional ileostomy, you’ll need to take care of it in order to reduce the risk of gastrointestinal discomfort and other complications.
How to change your bag
Your surgeon will advise you to take the following steps for ostomy care:
- Empty your ostomy bag whenever it’s a third of the way to halfway full. This will help prevent leakage and bulkiness.
- When you’re ready to empty the bag, hold the bottom of the bag and slowly lift up, gently unrolling it over the toilet. Clean both the inside and outside of the pouch tail with some toilet paper and roll it back up.
- When changing the ostomy bag out, you’ll want to carefully clean any discharge around the stoma and clean your skin with soap and water. Make sure your skin is completely dry before placing a bag and patch (used to cover your stoma) against it.
Changing out your ostomy bag also provides you with an opportunity to look for any possible skin irritation.
How often to change your bag
Depending on the type of ostomy bag you have, you may need to change it out once per day or a few times per week.
You may also need to switch out the bag more often if you sweat a lot because it won’t be able to stick to your skin as effectively as it should.
When to call your doctor
Call your doctor if your skin is excessively red or irritated, as this could indicate an allergic reaction to your ostomy materials. This is usually fixed by using different adhesives and patches.
After your UC surgery, you’ll stay in the hospital for 3 to 7 days. This window of time allows your surgeon to monitor you for signs of complications.
Both ileostomies and pouch surgeries will require a 4- to 6-week recovery period.
During this time, you’ll meet regularly with your surgeon, doctor, and possibly an enterostomal therapist.
An enterostomal therapist is a specialized therapist who works directly with people who’ve had their colon removed.
Your care team will likely cover the following points with you to help improve your recovery:
- Eat well. Good nutrition can help your body heal and help you avoid post-operation health issues. Nutrition absorption can be an issue after these surgeries, so eating well will help you maintain healthy levels of nutrients.
- Hydrate. Hydration is important for your overall health but especially for your digestive health. Drink six to eight glasses per day at a minimum.
- Stay active. Work with a rehab therapist or a physical therapist to slowly recover your physical capabilities, and exercise when you can. Staying active is a great way to care for your overall health as you recover, but too much activity too soon could complicate your recovery.
- Manage stress. Anxiety or emotional stress can cause stomach issues, which can increase your risk for an accident.
Surgery is usually a last-resort option for UC, partly due to the fact that any surgery can pose risks and complications. Some of the risks of UC surgery include:
- itching or irritation of the stoma
- organ damage
- blocked intestines from scar tissue buildup
- excessive gas
- rectal discharge
- nutritional deficiencies, especially vitamin B12
- electrolyte imbalances
Bowel surgery may also increase your risk for developing phantom rectum. A phantom rectum refers to the feeling of having to pass a bowel movement even though you no longer have a rectum. This can occur for several years post-surgery.
Meditation, antidepressants, and over-the-counter (OTC) pain relievers may help with phantom rectum.
If you’re considering surgery as a UC treatment, talk with your doctor about your options and the risks.
Write down a list of questions before the appointment. Bring along a spouse, family member, or friend to help you remember answers and ask questions.
Questions to ask your doctor
- Am I a candidate for surgery?
- How will this surgery affect my UC symptoms?
- What are the risks of this surgery?
- What are the possible short- and long-term complications?
- Which type of surgery is best for me?
- Have you worked with a surgeon who has performed this procedure before?
- What will recovery be like?
- Will I need to make any lifestyle changes?
- How will this surgery affect my day-to-day life?
For most people with UC, surgery is the last option after other treatment options have either failed or not provided the necessary relief.
Surgery options fall into two main categories. The key difference is where the waste pouch is placed following surgery.
Both types of surgery are intensive and require a lengthy recovery period. Before you make a decision, consult a variety of healthcare professionals, including your doctor, a surgeon, and an enterostomal therapist.
UC doesn’t have a cure at the moment, but removing your colon and rectum does help treat the symptoms.
You may still live with many of the side effects of these surgeries long after the incisions have healed, though. That’s why it’s important that you feel prepared and informed about your options before going into the hospital.