Thinking about surgery for Crohn’s disease?
Doctors and patients explain why this treatment for Crohn's can be life-changing and what to expect each step of the way.
Amber Wallace never thought she’d speak publicly about her ostomy surgery. When it happened, she planned on keeping it a secret until she could hopefully have it reversed. “I thought it was going to be something I was ashamed of and would never want to talk to people about,” she admits. It was only when her friends started asking about her hospital visits that she began sharing her story.
Wallace, now 29, was diagnosed with Crohn’s disease when she was 17, after years of struggling with chronic gastrointestinal symptoms, including diarrhea, loss of appetite, and abdominal pain. For a time, her disease was manageable with medication. But then she started having blood in her bowel movements, which led to a drop in hemoglobin (an iron-rich protein in red blood cells), leaving her with anemia. “It got so bad that I was having to go to the bathroom like 20 to 25 times a day,” she recalls.
During the summer of 2016, Wallace spent a scary few months in the hospital, where her doctor discovered the lining of her colon was thinning from inflammation, increasing her risk for a rupture. She was also fighting off an intestinal bacterial infection called C. diff, which sometimes occurs among people with weakened immune systems. This double-whammy attack put her life at risk, her doctor told her. After praying with her family and considering his recommendation for surgery, Wallace opted to have her colon removed (known as a complete colectomy) the next day.
Still, the decision brought on plenty of anxiety. She was worried the ileostomy bag she’d have to wear on her abdomen to collect waste (via a small opening in her abdomen called a stoma) would embarrass her. “I had a lot of really supportive nurses that were encouraging me, telling me what a great thing this could be, and showing me pictures online of people who had ostomy bags who were still living their life and wearing swimsuits,” she recalls. That kept her going through the surgery and long recovery process, and she never looked back.
Now, almost four years after surgery, Wallace is doing better than ever. She’s even become an advocate for people living with Crohn’s through her blog and YouTube channel, The Ostomy Diaries. “I work full-time as a high-school science teacher, I got married, I have the Ostomy Diaries, I go swimming…anything I want to do,” she says. “It’s enabled me to work and live a normal life and not be hospitalized so much, and really just experience happiness and be present with my friends and family.”
Is surgery a common solution for Crohn’s?
Wallace’s experience is uniquely personal, but it’s also relatable for the 1.6 million Americans currently living with an inflammatory bowel disease (IBD). Crohn’s is a form of IBD that causes deep inflammation in the digestive system, most commonly in the end of the small intestine (the ileum) or in the colon.
Up to 75% of people with Crohn’s eventually need some kind of surgery, and many, like Wallace, wish they’d done it sooner. It’s not a cure—there is no known cure for Crohn’s disease at this time—but surgery can prevent further damage to the bowel area. Equally important, “surgery restores the quality of life for patients,” says Stephen Hanauer, M.D., medical director of the Digestive Health Center at Northwestern Memorial Hospital in Chicago. “It removes the blockage and active inflammation, and immediately thereafter the patient is improved as far as their pain and distention is concerned. If they have surgery on the colon, it alleviates the diarrhea and bleeding and pain associated with that.”
This isn’t to say surgery can’t come with challenging complications and side effects. Dr. Hanauer explains that the intestine’s job is to absorb nutrients, so when a large portion of it is removed, it can be harder for your body to take in the nutrients it needs from food. “Most often, we are able to control that with some simple medicines such as Imodium and Lomotil,” he says, which slow down the movement of food through the intestine. “But sometimes patients may need to adjust their diet somewhat, usually to avoid fatty foods, in order to increase bowel frequency after surgery.” The proper treatment plan will ultimately depend on what you and your doctor determine you need.
What symptoms lead to surgery?
Symptoms of Crohn’s vary based on where the disease is located in your body. Again, if it affects the ileum, your body has problems absorbing nutrients from food during digestion. When affecting the colon, Crohn’s can cause rectal bleeding and diarrhea, along with abdominal pain.
Like every immune-related condition, Crohn’s is a systemic disease. “When the intestine is inflamed, there may be inflammation of the joints, the eyes, or the skin,” explains Dr. Hanauer. This is part of why it’s so important to keep your inflammation levels as low as possible by altering your diet and working with your doctor to take proper medications.
If you stop responding to your meds (which sometimes happens for unknown reasons), or if your quality of life becomes so severely impacted that day-to-day life is a real challenge, you and your doctor might make the decision to intervene surgically. “Surgery is indicated most commonly when the medications given to treat Crohn’s disease are not working, and the patient is having symptoms,” explains Benjamin Shogan, M.D., a surgeon at UChicago Medicine in Chicago, who specializes in colorectal diseases and disorders. “Symptoms can include abdominal pain, bloating, and diarrhea. Sometimes Crohn’s disease can cause an infection [called an abscess], and when this happens, surgery is usually indicated.” An abscess is a pus-filled mass that causes severe abdominal pain, pus discharge, a swollen lump in the pelvic area, and, sometimes, fever.
Some people develop a stricture (a narrowing of the small intestine), caused by scar tissue formed from chronic inflammation. This can lead to a painful blockage in the digestive tract, nausea, vomiting, and constipation. “Because the small intestine is actually narrower in diameter than the colon, it is more susceptible to developing a stricture that would cause a blockage of the intestinal contents,” Dr. Hanauer says. “The most common surgery for Crohn’s disease is removing that piece of narrowed intestine.” He compares it to removing a piece of rusty pipe and reconnecting the two pieces on either side, so the contents can flow through more smoothly.
Surgery might be elective, meaning you choose it to help relieve your symptoms, or urgent, meaning you’re experiencing a crisis, such as bleeding or the emergence of colorectal cancer, making surgery a medical requirement.