If you are suffering from ulcerative colitis or Crohn's disease and have not experienced relief with medications or other therapies, you may be considering surgery to remove part or all of your intestine. You probably don't know what to expect, or what life will be like after the surgery. The good news is, our team of skilled surgeons has performed thousands of these surgeries. We have seen our patients lead vibrant, active, pain-free lives after their surgery.

An ileostomy is a necessary, and sometimes temporary, part of having your colon or bowel partially or completely removed. Surgeons create an opening in your abdomen that helps move waste out of the body instead of through the anus.

What is an Ileostomy?

An ileostomy is an opening in your belly wall that surgeons create during surgery. An ileostomy is an opening used to move waste out of the body when the colon or rectum is not working properly. It may be a temporary solution as part of an ileal pouch procedure, or it may be permanent. The part of the bowel brought up through the abdominal opening is the part of the small bowel called the ileum, thus it is called an ileostomy.

You will need to wear a small bag or appliance over that opening to collect stool, since your body will no longer be able to deal with this process itself. The bag will be emptied by detaching it from an adhesive faceplate around the stoma, about 3 - 4 times a day.
 
An ileostomy can be temporary or permanent. For example, a temporary ileostomy might apply if you have a perforated bowel.  An ileostomy might be created to keep the stool away from the area of disease or surgical repair; when it's all healed, the bowel is sewn together again, getting rid of the ileostomy.

What is the Difference Between an Ileostomy and a Colostomy?

  • In a colostomy, the stoma (the part that is pulled through the abdomen) is made from the colon.
  • With an ileostomy, the stoma is made from the small intestine (ileum).
  • Stool from a colostomy is thicker than stool from an ileostomy because there's more bowel left to absorb water.
  • Colostomies are usually on the left side of the abdomen whereas ileostomies are usually on the right.

Is My Ileostomy Permanent?

Your ileostomy might be temporary or permanent, depending on how much of your colon or rectum must be removed during surgery. When your ileostomy is temporary, it usually means you still have at least part of your colon or rectum downstream available, to which an ileostomy can be attached. If you have surgical repair on part of your large intestine, your doctor may want this area of your intestine to rest while it heals. Your doctor will give you an upstream ileostomy and stoma bag to protect this area from contamination while you recover and your intestine heals. When fully recovered, you will have another surgery to reattach the ends of the small intestine, and you will no longer need the ileostomy.

If all of your large intestine and rectum and anus have been removed, you may need to have an ileostomy for the long term.

What are the Alternatives to Ileostomy?

Advancements in surgical treatment for ulcerative colitis provide the option of surgery without needing a permanent ileostomy. The procedure still involves taking out the colon and rectum, but instead of making a hole through the abdomen, your surgeon constructs a pouch using the small intestine, which will act as a new reservoir for the stool inside the body. This internal pouch, known as an ileal pouch, is connected to the anus, so bowel movements leave the body through the normal route.  However this operation is usually done for patients with ulcerative colitis and not for Crohn's disease. Carlino Family Inflammatory Bowel Disease Center is a national leader in ileal pouch anal anastomosis (IPAA) procedures, having performed more than 450 of these procedures for patients of all ages with IBD. Learn more about ileal pouch procedures.

Ongoing Stoma Care and Support

Our doctors and stomal therapists are dedicated to providing you with the education and support you need to adjust to your ileostomy. They will educate you before your operation, counsel you after your operation, show you how to care for your ileostomy and stoma pouch, and follow up with you on a regular basis. Their goal is to help you live well with your stoma and enjoy your life again.  Patients with either a colostomy or ileostomy can lead a healthy, normal, active life.

In addition to medical care, we offer monthly support group meetings for patients living with all aspects of IBD. Support from your peers can be comforting for people living with a ileostomy. Crohn's and colitis support group meetings are often intimate gatherings where patients and their loved ones can share their stories, seek emotional support, find answers to their questions, and connect with a community who share their challenges.

Crohn’s Disease and Ulcerative Colitis Support Group

The Crohn’s and Colitis Support Group provides information, support and resources for patients and families with the goal of building a group that allows the...

The Crohn’s and Colitis Support Group provides information, support and resources for patients and families with the goal of building a group that allows the Carlino Family Inflammatory Bowel Disease Center patients and their family members to develop connections with and receive support from other patients and care providers. Our scheduled speakers provide practical and up-to-date information on various aspects of Inflammatory Bowel Disease (IBD).

The meetings are free and take place quarterly from 6-8 p.m.

For more information, contact Rachael Wentzel, IBD support group facilitator at [email protected].

Pediatric Inflammatory Bowel Disease Support Group

The Pediatric Inflammatory Bowel Disease Support Group provides adolescent pediatric inflammatory bowel disease (IBD) patients age 12-18 years and their parents with helpful information and the...

The Pediatric Inflammatory Bowel Disease Support Group provides adolescent pediatric inflammatory bowel disease (IBD) patients age 12-18 years and their parents with helpful information and the chance to meet others living with IBD.

The meetings take place quarterly at Penn State Health Children’s Hospital, rooms P1100/P1100A, and feature a brief presentation on educational topics, followed by discussion for the parents and an activity for the adolescents. 

Please call 717-531-1043 for more information..

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