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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.
What are the types of surgeries available?
Here’s a quick breakdown of the most common procedures for Crohn’s disease and why someone might need them.
Surgical drainage: This refers to the process of inserting a tube to remove pus from an abscess or fistula. It doesn’t involve removal of any part of the bowel.
Strictureplasty: If your intestines become narrowed due to scarring, your doctor may decide to widen a narrowed area of the intestine without removing anything. They’ll do this surgery by making an incision in the narrow area and re-sewing it in a crosswise direction.
Ostomy: When the intestinal damage has made it difficult for your body to pass stool normally, you’ll be fitted with an ostomy bag that sits on your abdomen, where undigested food can come out. This is done by creating a stoma from either your ilium or colon. In some cases, an ostomy can be reversed after six months to a year once scarring has resolved. In other situations, it’s permanent.
Ileocecectomy: Also called ileocecal resection or small bowel resection, this procedure is done when Crohn’s affects a portion of the small intestine. Your doctor may opt to remove that portion of the ileum, then reconnect the remaining intestine with the colon.
Proctectomy: This surgery is done to remove a damaged rectum. After a proctectomy, you’ll need a permanent ostomy bag since your body can no longer dispel stool through typical means.
Colectomy: This surgery is necessary when the entire colon (a.k.a. large intestine) in damaged and needs to be removed. In some cases, the doctor will reconnect the small intestine and the rectum so stool can pass through normally. In other cases, like Wallace's, the patient may need an ostomy.
The details of each surgery varies based on the specific situation. “Surgery can be performed either with minimally invasive techniques [known as a laparoscopic approach, using very small incisions] or open surgery, or a combination of both,” says Ben Hopkins, M.D. associate professor of general surgery at Vanderbilt University Medical Center in Nashville. If the surgery is laparoscopic, it’s done by inserting a small tube into the abdomen, along with a tiny camera so the doctor can see the affected area without a larger incision.
Laparoscopic procedures can be done for all types of Crohn’s surgeries, including resections and colectomies. They are still true surgeries that require general anesthesia and surgical cutting into your abdomen, but they typically have a decreased recovery time and minimal scarring. Open surgery involves a larger cut into the abdominal area, which takes longer to heal. If you need a more extensive intestinal repair, or if you have severe inflammation that makes it tough for the doctor to access the affected area, you will likely need to go with open surgery. Ask your GI doctor about which one of these options might be the right choice for you.
So, what's recovery like?
Much like Wallace, Brian Greenberg, a Crohn’s advocate and triathlete who runs The Spoonie Ironman, struggled with GI and whole-body problems, including fever, intestinal pain, nausea, weight loss, bloody stool, infections, and brain fog. “I suffered from a wide variety of symptoms at once, which led us to decide surgery was needed,” he says.
Greenberg has had multiple surgeries, including infection drainage, colon resection, colon removal, and ostomy. “My doctor and I always had conversations before my surgeries. Most of the time, the decision was made on the basis of running out of ways to treat my Crohn’s disease, or due to the low quality of life that I was living,” he says. After previous, smaller surgeries, he bounced back within a few days or weeks. The major ones (his ostomy and proctectomy) took him months to fully recover.
Unfortunately, complications are a fact of life for many people who have bowel surgeries. After his proctectomy, Greenberg was bedridden with a visiting nurse service until he fully recovered. And Wallace had a blood clot scare one month after her ostomy, which put her in the ICU for two weeks. While surgeries are not considered unsafe, it’s important to be aware how you might encounter some post-op challenges.
What's life like post-surgery?
One of the biggest challenges for Greenberg was learning to live in a new way. “Many times IBD surgery is about adapting to a new way of life, since you and your body need to adjust to the digestive system working completely differently,” he says. “When I had ostomy surgery, I didn’t return to a normal life. I returned to a new normal. With that said, I do more now than when I was sick, such as completing a full 140.6 mile Ironman triathlon.”
Surgery represented the start of a newer and freer way of living for Greenberg. He’s now been off medication for six months and manages his Crohn’s through healthy lifestyle and nutrition choices, though he keeps in touch with his doctor for adjustments when necessary. “My ostomy surgery gave me my life back and allowed me to have control again in so many ways,” Greenberg says. “I went from having zero quality of life to being more active than many of my healthy friends. It also has allowed me to pursue an actual career.”
People who undergo such surgeries often have to change their eating habits to fit their new digestive system. “I had to figure out what foods work and don’t work again,” Greenberg remembers. “What are the best ways to hydrate? What activities are okay for my body now?”
Wallace learned from her doctor that she could no longer eat raw vegetables, nuts, and seeds. She keeps a food journal to learn what foods work for her through trial and error. She also learned to drink a ton of water. “It was really hard to stay hydrated, because your colon is what’s responsible for absorbing water and nutrients and things. It took several months for that to level out and adapt,” she says.
Wallace now takes a biologic intravenously every eight weeks—a big change from the six different medications she was taking before surgery. She also takes vitamins and watches her diet closely to make sure she’s getting the right nutrients. Life after her ostomy was an adjustment, she admits. “Be patient with yourself, give yourself time, and don’t try to learn it all in one day,” she urges. “It takes time, and you’re going to have slip-ups, but after a couple months you learn it, and it’s not overwhelming.”
Would Wallace do it all over again? You bet.
If anything, Wallace wishes she’d planned to have her ostomy even sooner. “This July will be four years, and I have not been hospitalized since then or had to have any other surgeries since then,” she says. In her life before surgery, she’d have to wake up an hour early to have breakfast so she could spend 30 minutes in the bathroom before work. She’d even skip meals to avoid having to rush back and forth to the bathroom. “It got to the point where I was wearing feminine pads in my underwear toward my rectum because I was having leakage,” she says.
Now, she doesn’t have those same worries. Wallace and her husband spent their honeymoon at Disney World in the summer of 2019, where she rode rides and enjoyed an active vacation. “Having an ostomy was not as terrible as I thought it would be,” she says. “I thought it was going to completely wreck my life, that I wouldn’t be able to go swimming or wear cute clothes or anything like that, and I was wrong. That stigma and false truths out there that a lot of people are nervous about, a lot of it was just in my head.”
Surgery is not a perfect solution, and it isn’t a cure for Crohn’s because the disease can still recur—but it also isn’t anything to be afraid of, if your doctor recommends it, Wallace says. “It was stressful going through it, but I’m grateful for the experience. It taught me to be grateful for the small things in life. Sometimes, when things look bad, they can actually lead you to really good things.”