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Everyone has their limit, and for Kacy Holloway, she reached it after five years of unrelenting and exhausting symptoms of ulcerative colitis (UC).
“I had been on every medication approved for UC and had even gone through a clinical trial and failed,” says Holloway, 22, who lives in Waco, TX. “I was missing school and was stuck at home, lonely and bored. I was ready to be done with it all, and surgery seemed like the only option to even think about if I wanted a semi-normal life.”
The procedure she wanted? A proctocolectomy with ileal pouch-anal anastomosis, or IPAA. In regular human language, this means doctors remove the colon and rectum and create a new “pouch” to hold stool from a part of the small intestines called the ileum. (It looks like a “j,” which is why it’s called j-pouch surgery). The anal sphincter remains intact so patients can eventually continue to use the bathroom as usual.
Hers is the kind of resolve that Crina Floruta, C.N.P., a nurse practitioner in the colorectal surgery department at the Cleveland Clinic, sees often. "These patients know every bathroom in the city. They’ve been on many medications, some involving infusions—they get tired,” she says. “They’re ready to have surgery—not like someone recently diagnosed who wants to try medical management first.”
It's estimated that between 25% and 40% of people with UC may eventually need surgery. On average, eventually means around 11 years after diagnosis, according to one study of almost 200 patients, published in the International Journal of Colorectal Disease.
“Many patients tell us they wish they’d done surgery sooner,” says Tracy Hull, M.D., a colorectal surgeon at Cleveland Clinic, and president of the American Society of Colon and Rectal Surgeons. “Still, we want to make sure we give them absolutely the best chance for medications to work.” Which is why surgery is usually a treatment of last resort.
Think you might be edging into that territory? Here’s what you need to know before heading to the OR.
12 Ways to Know if Surgery Could Be Right for You
When your UC is difficult to manage, “the decision is made via a team approach with the patient, surgeon, and GI doctor,” says Dr. Hull. “It's always so important to give patients options and to provide enough information to make a good decision.”
Physicians and doctors agree that surgery may be right for you if:
- Your UC is deemed "severe" and medication is just not doing the job anymore.
- You want your life back, thank you, since diarrhea, sometimes even bloody, seems to have taken it over.
- You're tired of feeling like you're in the bathroom more than anywhere else.
- You'd like to think of going somewhere—anywhere—without having to map out the nearest bathroom once you’re there (or having to stop en route).
- The pain of your UC is wearing on you—as chronic pain definitely does—and you can't imagine dealing with this forever.
- You're in good health otherwise, something you and your doctor will discuss in detail, since some chronic conditions, like heart disease and obesity, increase your risk for surgical complications.
- You and your doctor think the benefits you'll derive from having this procedure outweigh the risks.
- Your nutrition could use a big boost, since constant diarrhea reduces your body's ability to absorb the nutrients from your food.
- Removing your colon will definitely improve your condition and your life.
- You don't want to have a permanent ileostomy, which requires wearing an ostomy bag on the outside of your body to collect waste.
- You don't have Crohn's disease on top of UC, because when even after surgery, your Crohn’s symptoms may very well continue.
- Your anal sphincter is still highly functioning. Those muscles help keep fecal matter in your rectum.
How J-pouch Surgery Works
This brings us back to the j-pouch, the most common surgery for people with UC, like Holloway. The procedure was developed in the late 1970s and is considered the procedure of choice for chronic UC, according to researchers in the journal Clinics in Colon and Rectal Surgery.
Of course, it's not without complications, but it gets votes because it allows patients to eliminate bodily waste normally, without an ostomy—two huge pluses in the quality-of-life category.
Surgery involves two or three stages—although two-stage surgeries are common, many surgeons are doing more three-stage operations now, says Dr. Hull, especially for patients who’ve taken numerous medications that haven’t controlled their disease. And though it’s a longer process, recent research shows that three stages may ultimately reduce the rate of complications. Holloway underwent three surgeries between May 2017 and May 2018.
According to the Cleveland Clinic, these types of patients may do best with three-stage surgeries:
- someone who’s anemic or has lost lots of weight
- someone who has been on high steroid doses, immunomodulators, or biologics
- someone who needs emergency surgery.
Here’s how the three stages of this one surgery typically go, according to Dr. Hull:
Stage 1: A surgeon removes the diseased colon and leaves the rectum and anus, performing a temporary ileostomy that changes how waste leaves the body—the ileum is the third section of the small intestine. An ostomy bag is attached to the skin on the abdomen to collect stool via an opening in the abdomen called a stoma. This is frequently done with a laparoscope as a minimally invasive procedure, says Dr. Hull.
“For patients malnourished from their severe diarrhea and inability to eat enough calories, this stage gives them a chance to recover, and they feel like a great weight has been lifted,” Dr. Hull says. They remain like this for six months.
“I'd been on steroids a long time and was still on them until my first surgery because I was so sick without them,” Holloway says. “The disease was removed with my colon during that first surgery, then I had to be off steroids two months before my second one—you don't heal as well on steroids.”
Her mom has a video of Holloway coming out of surgery. “The first thing I said was, 'I'm not hurting as much anymore!' Having the ostomy bag took some adjustment, and I had some body image struggles, but I definitely appreciated my new reality.”
Stage 2: During this stage, the rectum is removed, and the ileum is folded back on itself to construct the internal pouch, which is then attached to the anal muscles. Upstream from this internal pouch, a loop of small intestine is attached to the stoma while the internal pouch heals. (Yes, you still use an ostomy bag at this point.) The procedure can be done “open,” laparoscopically, or robotically, Dr. Hull says. The patient remains like this for about three months.
Holloway wasn’t as nervous this time around, but the benefits weren’t quite as dramatic either. But still, she trusted the process. “I knew I had an internal pouch that needed to heal.”
Stage 3: The surgeon reverses the ileostomy. This involves freeing up the loop ileostomy, reattaching the ends, and closing the stoma.
“I was really excited to get rid of the ostomy bag, but it was a learning curve to relearn how to go to the bathroom again with my insides completely different,” Holloway says. “Food processes through the body faster, but nothing like when I was sick and running to the bathroom with active disease in my colon.”
Without the colon to absorb fluid, stool will always be a bit loose, says Dr. Hull. “It’s not like diarrhea—more like baby poop,” she says.
Possible J-Pouch Complications
While most patients are happy with their outcome, surgery is still surgery, and complications are possible. Some of the possibilities include:
Pouchitis: This is inflammation of the pouch. It's the most common complication, and it’s treated with antibiotics (if it becomes chronic, you'll likely also take probiotics). You may have more frequent bowel movements and urgency, nighttime leakage, abdominal cramps, general pelvic discomfort, maybe even a fever or some blood in your stool.
A leak or seepage: This occurs most often where the pouch joins to the anal area. If you have an accident, don't despair, because things will get better. Give this time because your stool will eventually get thicker, your pouch will expand, and sphincter muscles will also toughen up. If this continues to be a problem, talk to your doctor. And definitely do that if you develop these next complications.
Bleeding: As with any surgery, the incision can bleed.
Pelvic abscesses: Like other abscesses, this is an area of infection around the j-pouch site. You could have abdominal pain, fever, and a higher white blood-cell count, just like you'd have with an infection.
Bowel obstruction: This is narrowing caused by scar tissue or adhesions, little bands of scar-like tissue, keeping stool from moving through your digestive system. You could have cramps, be nauseated, and vomit.
It doesn't happen often, but pouches can fail due to complications, says Dr. Hull, making a revision surgery necessary. In fact, a Cleveland Clinic study looked at more than 900,000 colon and rectal procedures between 2005 and 2016 and found 600 surgically repaired pouch failures. That’s just .0006%.
“To help prevent and uncover any long-term problems that could be developing, we recommend patients have their pouch inspected at least every two-to-three years,” she says. Your doctor will do a visual exam and can also use an endoscope to look carefully inside your pouch.
Life After Surgery for UC
There are going to be some adjustments to get used to, especially with what you eat. You’ll have some dietary restrictions at each stage of surgery, usually until about three month after the final one, says Floruta. By then your bowels will have likely settled into their new routine.
Your doctor will talk to you about diet specifics, but nutrition experts at the University of Wisconsin and UW Health suggest a soft, low-fiber, high-protein diet.
They recommend that you avoid:
- High-acid foods like orange juice, lemonade and tomato products, that can cause burning due to frequent bowel movements
- High-fiber foods like nuts, seeds, and hulls; fatty meats, raw fruits and vegetables
- Anything really spicy
You can eat:
- Canned fruits, cheese, cooked vegetables, fish, milk, potatoes, pasta, poultry, white bread, white rice, yogurt, and more.
Also, please drink plenty of water now and going forward. Since your colon was removed, you won't retain water as well and you could get dehydrated.
“Today I know what works best for my pouch—what foods are great for me, and what to stay away from,” Holloway says. “Vegetables are hard for me to digest. Cooked ones are easier but salads are hard, as well as fried foods and too many sugary foods.”
You’ll also just want to take it easy for a while. “Don’t drive 50 miles per hour in a 25 zone because if you speed, you’re probably going to get caught,” Floruta says. “Be realistic because there is some pain immediately after surgery, but we’ll give you medications to help manage it.”
To avoid complications following any surgery—always the goal—most doctors advise no-go on lifting and any other strenuous activity, possibly for as long as to six weeks. Stress on the site could cause your wound to break open.
Take care during recovery, and you'll be on the road to a new life with the possibility of new opportunities.
Holloway just graduated from Baylor University in Texas in accounting and is aiming for a career in healthcare administration. She’s still very grateful for her “great healthcare team,” she says.
“I loved my doctor and my nurse, and I actually miss being able to see them.”
Holloway also says her support team—parents, other family, and best friends—was critical to her success, and they were with her every challenging step of the way. And that includes cheering her on during the half marathon she ran in May 2019, a year after her surgery. That was something that never would have been possible before. And now, the whole world is open.