For many people with inflammatory bowel disease (IBD), ostomy surgery represents a significant turning point. Whether performed as an emergency measure or as a planned step after other treatments have failed, the decision often comes with uncertainty about what daily life will look like afterwards. Understanding the practical realities can help patients and families feel more prepared.
What is an ostomy?
An ostomy is a surgically created opening in the abdomen through which waste leaves the body. The opening itself is called a stoma, formed from intestine brought to the skin surface. The stoma is typically red or pink, moist, and has no nerve endings, so is not painful to touch.
Waste is collected in a pouch that adheres to the skin around the stoma. The type of ostomy depends on which part of the bowel is involved.
Types of ostomy in IBD
Ileostomy
An ileostomy is formed when the end of the small intestine, the ileum, is brought to the abdominal surface. This is the most common type in ulcerative colitis and Crohn’s disease. Because waste has not passed through the colon, output is usually liquid or semi-liquid and more frequent. Ileostomies may be temporary, to allow healing, or permanent when the colon and rectum have been removed.
Colostomy
A colostomy is created from the large intestine. Output consistency depends on where the stoma is formed. Higher colostomies produce more liquid waste, whilst those further along may produce more formed stool. Colostomies are less common in IBD than ileostomies but may be used in certain cases of Crohn’s disease.
End ostomy vs loop ostomy
An end ostomy involves bringing one end of the bowel to the surface and is often permanent. A loop ostomy brings a loop of bowel through the abdominal wall creating two openings. Loop ostomies are usually temporary, diverting waste from a healing section of bowel.
Why ostomy surgery is needed in IBD
Ostomy surgery is not first-line treatment. It is typically considered when:
- Medical therapy, including immunosuppressants and biologics, has not controlled disease.
- Severe complications occur, such as perforation, obstruction, toxic megacolon, or uncontrollable bleeding.
- Persistent symptoms significantly affect quality of life despite treatment.
- Dysplasia or cancer is detected in the bowel.
In ulcerative colitis, removal of the colon with an ileostomy can be curative. In Crohn’s disease, ostomy surgery does not cure the condition but can significantly improve symptoms and quality of life.
The early weeks after surgery
Recovery varies depending on whether surgery was planned or emergency, and on the person’s overall health.
Physical recovery
Most patients stay in hospital for five to seven days. During this time, the stoma begins to function and the person learns pouch management. The stoma will be swollen initially but shrinks over the following weeks.
Pain and fatigue are common in the first few weeks. It is important to follow post-operative guidance on activity, wound care, and diet.
Learning to manage the ostomy
Stoma care nurses teach patients how to care for their ostomy, including emptying and changing the pouch, caring for surrounding skin, and recognising complications such as infection, blockage, or irritation.
Output from an ileostomy can be quite liquid initially. Over time, many people develop a routine and learn what works best for them.
Adjusting to life with an ostomy
Diet and digestion
After ileostomy surgery, digestion changes because waste no longer passes through the colon, where water and electrolytes are normally absorbed. This means more liquid output and higher risk of dehydration and electrolyte imbalance.
Certain foods may increase output or cause blockages, particularly high-fibre foods, nuts, seeds, and fibrous vegetables such as sweetcorn and mushrooms. Chewing food thoroughly and introducing new foods gradually helps reduce blockage risk.
Some people find certain foods cause more gas or odour. Keeping a food diary can help identify triggers.
Physical activity
Most people can return to normal physical activity after full recovery, though this may take several months. Swimming, exercise, and even contact sports are possible, although some wear support belts for extra security.
Heavy lifting should be avoided initially, and abdominal exercises introduced gradually to reduce parastomal hernia risk.
Clothing and appearance
Modern ostomy pouches are discreet and lie flat against the body. Most people can wear usual clothing, although some prefer looser waistbands for comfort. Specially designed underwear and swimwear are available but not always necessary.
Psychological adjustment varies. Some feel relieved, particularly if very unwell before surgery. Others may experience grief, frustration, or anxiety. Support from stoma care nurses, counsellors, and peer support groups can be invaluable.
Relationships and intimacy
Concerns about intimacy are common after ostomy surgery. Open communication with partners, reassurance from healthcare teams, and practical advice on managing the pouch can help. Many find confidence improves once adjusted to the ostomy, particularly if previously limited by severe symptoms.
Potential complications
Most people adapt well, but complications can occur.
- Skin irritation around the stoma is usually caused by leakage or ill-fitting pouches. Proper fit and skin care are essential.
- Blockages can occur if food becomes stuck. Symptoms include cramping, swelling, and reduced output. Seek medical advice if symptoms persist.
- Parastomal hernias develop when intestine pushes through the abdominal wall near the stoma. They may require surgical repair if causing discomfort.
- Stoma prolapse or retraction occurs when the stoma pushes out further or pulls inwards, sometimes requiring adjustment or surgical correction.
Practical takeaways
- Work closely with your stoma care nurse, particularly in the first few weeks.
- Stay well hydrated, especially with an ileostomy, and be mindful of salt intake.
- Introduce new foods gradually and keep a diary to identify problems.
- Return to physical activity gradually, following healthcare guidance.
- Seek support if struggling emotionally; adjustment takes time, and peer support helps.
Conclusion
Life after ostomy surgery is different, but for many with IBD, it brings significant relief. The adjustment period involves learning new skills, adapting routines, and sometimes working through complex emotions. With good support, most people find they can live full, active lives. Whilst an ostomy is a permanent change, it need not define a person’s identity or limit their future.
References
- Knowles SR, Wilson J, Wilkinson A, et al. Psychological well-being and quality of life in Crohn’s disease patients with an ostomy. J Wound Ostomy Continence Nurs. 2013;40(6):623-629. doi:10.1097/01.won.0000436670.56153.7b
- Nagle D, Pare T, Keenan E, et al. Ileostomy pathway virtually eliminates readmissions for dehydration in new ostomates. Dis Colon Rectum. 2012;55(12):1266-1272. doi:10.1097/DCR.0b013e31827080c1
- Maydick D. A descriptive study assessing quality of life for adults with a permanent ostomy and the influence of preoperative stoma site marking. Ostomy Wound Manage. 2016;62(5):14-24.
- Dabirian A, Yaghmaei F, Rassouli M, et al. Quality of life in ostomy patients: a qualitative study. Patient Prefer Adherence. 2011;5:1-5. doi:10.2147/PPA.S14508
- Persson E, Severinsson E, Hellström AL. Spouses’ perceptions of and reactions to living with a partner who has undergone surgery for rectal cancer resulting in a stoma. Cancer Nurs. 2004;27(1):85-90. doi:10.1097/00002820-200401000-00011
- Simmons KL, Smith JA, Bobb KA, et al. Adjustment to colostomy: stoma acceptance, stoma care self-efficacy and interpersonal relationships. J Adv Nurs. 2007;60(6):627-635. doi:10.1111/j.1365-2648.2007.04446.x
This article is intended for informational and educational purposes only. It does not constitute medical advice and should not be used as a substitute for professional medical guidance, diagnosis, or treatment.