Understanding Crohn's Disease and Ileostomy
Crohn's disease is an inflammatory bowel disease that causes inflammation of the digestive tract. This chronic condition can affect any part of the gastrointestinal system, from the mouth to the anus. One potential complication of Crohn's disease is the development of strictures or blockages in the intestines due to inflammation and scarring. This can lead to a buildup of waste and obstructions. In severe cases where medication and less invasive surgeries have not helped, an ileostomy may be recommended.
What is an Ileostomy?
An ileostomy is a type of ostomy or stoma surgery. It involves creating an opening in the abdomen called a stoma that allows waste to bypass diseased or damaged areas of the lower digestive tract. The end of the small intestine, called the ileum, is brought through this opening to the outside of the body. With an ileostomy, waste exits the body through the stoma into an external pouch or bag attached to the skin.
Ileostomies provide an alternate path for waste removal when parts of the large intestine, colon, rectum or anus are not functioning properly. This may be due to inflammatory bowel diseases like Crohn's disease or ulcerative colitis, cancer, injury or birth defects. The procedure diverts stool away from the inflamed, obstructed or diseased sections of the bowel, allowing the rest to heal.
Why Get an Ileostomy for Crohn's Disease?
People with Crohn's disease may need an ileostomy to treat severe inflammation, obstructions, fistulas or other complications when medications and less invasive surgeries are not sufficient. Reasons include:
- Strictures - narrowing of the intestines due to swelling and scarring
- Blockages or obstructions that cause a dangerous backup of waste
- Abscesses, perforations or fistulas - abnormal passages between organs
- Toxic megacolon - dangerously inflated and inflamed colon
- Removal of sections of diseased colon or rectum (proctocolectomy)
- Anal/rectal problems like abscesses, fissures and fistulas
Once problematic sections of the colon or rectum are removed or bypassed with an ileostomy, inflammation can improve. However, this is a major surgery only considered when other options have failed. Patients and doctors must weigh the benefits with potential complications.
The Ileostomy Procedure
Ileostomy surgery is done under general anesthesia, taking 2-4 hours. First, the surgeon makes an incision and opens the abdomen. The ileum is separated from the colon and brought through an opening made in the abdominal wall. The stoma is created here and sutured into place. With the ileum redirected out this stoma, waste can now exit the body without passing through the colon/rectum. Finally, the abdomen is closed up.
The stoma appears red and moist on the skin. At first it swells and protrudes, but it becomes flush with the skin over time. It may bleed slightly at first. After surgery, the stoma should make sounds of activity as waste begins passing through. An external pouching system is attached over the stoma to collect waste.
Typically, the initial ileostomy is temporary to give the colon time to heal, known as a loop ileostomy. A second surgery may be done weeks or months later to reconnect the intestine and reverse the ostomy. However, some people may need a permanent ileostomy.
Caring for an Ileostomy
Adjusting to life with an ileostomy takes time and practice. A special diet, supplies and skin care help avoid potential problems. Some important ileostomy care tips include:
- Following special dietary changes to prevent blockages and control odors - high fiber foods must be avoided
- Drinking plenty of fluids to avoid dehydration
- Using ostomy bags and pouches to collect waste
- Emptying the pouch when 1/3 full to avoid leaks and skin irritation
- Cleaning the skin around the stoma daily and using barrier wipes or powder to protect it
- Cutting the ostomy bag opening properly to fit snugly around the stoma
- Avoiding pressure on the stoma
- Recognizing signs of complications like infections, dehydration, prolapse
An ostomy nurse can provide education about diet, pouching systems, skin care and signs of trouble. Support groups and online resources also help ileostomy patients adjust.
Living with an Ileostomy
At first, having an ileostomy can seem overwhelming. But with practice, most people find it doesn't need to greatly limit daily life. In fact, because the surgery alleviates Crohn's disease symptoms, patients often gain more freedom to enjoy activities without fear of incontinence or urgency. With some lifestyle adaptations, patients can return to work, travel, exercise and socialize.
That being said, there are emotional hurdles to having an ostomy. Depression, body image issues and anxiety are common. Joining support groups, counseling and openly communicating with loved ones helps. Over time, patients typically adjust to this new normal.
Risks and Complications
Ileostomy surgery and recovery come with certain risks and potential complications. These may include:
- Infection of the incision or stoma
- Bleeding
- Skin irritation or breakdown around the stoma
- Dehydration and malnutrition from reduced nutrient absorption
- Bowel obstruction or blockage due to adhesions or hernias
- Pouch leakage
- Stoma prolapse when it telescopes out too far
If complications arise, additional procedures or treatments may be needed. Work closely with your ostomy nurse and doctor to minimize risks and address any problems that develop.
Being Prepared for an Ileostomy
Facing life with an ileostomy can be frightening at first. But being prepared helps this transition go smoothly. Here are some ways to get ready:
- Learn all you can about the surgery and what to expect
- Talk to others who have been through it
- Have supplies ready at home for recovery
- Practice stoma care with your ostomy nurse
- Line up emotional support systems
- Accept that adjustments will take time and be patient
Although ileostomies are a major change, they can vastly improve quality of life by alleviating Crohn's disease symptoms. An openness to adapt to a new normal can help patients thrive despite the challenges. Support from medical providers, family and peers also makes a big difference.
Outlook for Crohn's Patients with an Ileostomy
Living with Crohn's disease and needing ostomy surgery can certainly feel overwhelming at times. But the prognosis for most patients is very good. With treatment, periods of remission from Crohn's allowing normal functioning often last for years. And an ileostomy resolves dangerous obstructions and inflammation, providing an improved quality of life.
After healing from the initial surgery, many people feel better than they have in some time since their most severe symptoms are relieved. Most can go back to daily activities with minimal lifestyle adjustments. Be patient during the transition period and don't hesitate to ask your medical team for help. Joining Crohn's disease and ostomy support communities also provides invaluable help and understanding.
With time and practice, living with an ileostomy does get easier. So don't lose hope. Work closely with your doctors to manage Crohn's disease and maintain your ileostomy. Take it one day at a time, and you'll likely be surprised at how well you adapt to this new normal.
Disclaimer: This article is for informational purposes only and does not constitute medical advice. Always consult with a healthcare professional before starting any new treatment regimen.
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