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Medically reviewed and verified by Kate Burke, MD, MHA
Ulcerative colitis can be managed with medications, lifestyle changes, and dietary adjustments. The majority of people living with the condition don't need their treatment to extend beyond this! Studies1 have found, however, that just over 20% of people with UC will need at least 1 bowel surgery in their lifetime. If you fall into this group, or are curious about what it entails, look no further. PatientsLikeMe has a breakdown of the most common types of surgeries, their risks, and what life is like after they are performed.
Common Surgery for Ulcerative Colitis
Proctocolectomy with Ileal Pouch-Anal Anastomosis
Also known as "J-Pouch2" or "IPAA" surgery, this is the most common surgery for UC. It involves removing the colon and rectum while preserving the anus. The surgeon creates a small pouch from the end of the small intestine, which is then connected to the anus. This pouch acts as a reservoir for waste, which lets you to have bowel movements without an external ostomy bag.
IPAA is often done in stages. At first, an ileostomy (a temporary opening in the abdomen for waste) is created to let the newly formed pouch heal. After a few months, the ileostomy is closed. After healing, patients may have increased bowel movements, up to 12 per day initially, which usually decreases over time as the pouch expands and muscles strengthen. Most people settle around 6–8 bowel movements daily. Common complications include pouchitis3 (inflammation of the pouch), which is often managed with antibiotics. Other issues include diarrhea, abdominal pain, and increased stool frequency.
Proctocolectomy with End Ileostomy
In this procedure, the colon, rectum, and anus are removed, and an ileostomy4 is created. This leaves a permanent opening in the abdomen for waste to exit into an ostomy bag. The surgery involves creating a stoma (a small, round opening on the abdomen), which connects the small intestine to the outside of the body. An external bag collects waste, which has to be emptied several times every day.
With time, people generally adapt to life with an ileostomy. They can return to regular activities, including work, exercise, and travel. Some people like this option more because of its lower risk5 of complications as compared to IPAA. Complications can include stoma blockage, infection, prolapse (stoma protruding outward), or retraction (stoma receding inward). It is important to monitor the stoma and get medical help if issues do come up.
Elective Surgery for Cancer
People with UC are at a higher risk of getting colorectal cancer. The risk increases over time, with studies6 finding a 2% increase after 10 years of living with the condition, 8% increase after 20 years, and 18% increase after 30 years. Doctors might suggest preventive surgery if pre-cancerous cells are found during regular screening. This is true even if symptoms are under control. This elective surgery typically means removing the colon and rectum.
Risks Across All Surgeries
While surgery can help, there are potential risks with each option:
- Infections: Both during recovery and long-term, infections may happen at the surgery site or stoma. If this happens, they will need immediate treatment.
- Changes in habits: It is fairly common to have frequent and softer stools, along with a need to empty the pouch or ostomy bag regularly.
- Phantom rectum: After proctocolectomy, some patients7 may still feel as though they need to have a bowel movement. This is similar to how an amputee might feel sensations in a lost limb.
- Impact on lifestyle: For many, adjusting to an ileostomy or frequent bowel movements requires time. Body image concerns are also common, as the physical changes can feel significant.
Life After Surgery
After surgery, it may take up to a year for most people to fully recover. Here are some tips for a smoother recovery.
- Diet: Start with a liquid or soft diet, and gradually add low-fiber, bland foods to ease digestion. Stay away from foods that cause gas or irritation, and drink plenty of water to stay hydrated.
- Exercise caution: Doctors might recommend some physical restrictions for the first six weeks, depending on the surgery type.
- Mental health support: For some, adjusting to life after surgery can be hard8. Talking to a mental health professional or joining groups like PatientsLikeMe can help.
- Skin care: If you have an ileostomy, keeping the skin around your stoma clean and protected is important! There are specialized products to help with this, and your healthcare team can show you how to care for the area.
Surgery for ulcerative colitis can seem daunting, but it offers a chance to regain comfort and control over your life, especially when other treatments no longer work. Whether you’re considering a J-pouch surgery or a permanent ileostomy, talking about your options and understanding the risks with your healthcare team is key! With time, most people adjust to these changes and continue to lead active, fulfilling lives.
Take charge of your health with PatientsLikeMe, the innovative platform that empowers you to manage your wellness journey with confidence. Connect with others who share similar health experiences and gain access to their valuable insights and support. With PatientsLikeMe, you can easily track your symptoms, treatments, and outcomes, making it simpler to make informed decisions and communicate effectively with your healthcare team. Additionally, evaluate the success of different treatments based on real patient data, ensuring you select the best options for your health needs.
- https://pmc.ncbi.nlm.nih.gov/articles/PMC10184513/
- https://www.crohnscolitisfoundation.org/what-is-ulcerative-colitis/surgery/j-pouch-surgery
- https://pmc.ncbi.nlm.nih.gov/articles/PMC3093723/
- https://www.cancer.org/cancer/managing-cancer/treatment-types/surgery/ostomies/ileostomy/what-is-ileostomy.html#:~:text=An%20ileostomy%20is%20an%20opening,it%20needs%20to%20be%20removed.
- https://pmc.ncbi.nlm.nih.gov/articles/PMC2780077/
- https://pmc.ncbi.nlm.nih.gov/articles/PMC2725331/
- https://pubmed.ncbi.nlm.nih.gov/23652700/
- https://pubmed.ncbi.nlm.nih.gov/27813487/