According to the Evansville Ostomy News, Crohn’s disease “occurs in about 150 out of 100,000 people in the United States.” This translates into roughly 1 in every 670 persons. Up to three quarters of these patients will eventually have surgery. In a city like Windsor Ontario with a population of around 200,000, that would translate into approximately 225 of 300 patients having surgery for Crohn’s.
A 2008 article in Ostomy Wound Management reported an estimate by the United Ostomy Association that “approximately 0.5 million in the United States have ostomies.” That translates into a ratio of approximately 1 in every 600 persons. The UOA also reported “an equal distribution between the three major types of ostomy surgeries: colostomy 36.1%, ileostomy 32.2%, and urostomy 31.7%. In Windsor that might translate into 70+ ileostomies.
There is little data, unfortunately, on the number of Crohn's patients with a permanent ileostomy, either by choice or by necessity.
Types of Ileostomies
An ileostomy opens the small bowel onto the abdomen and the waste matter- more liquidy than a colostomy- empties into an attached bag. In the case I’m familiar with, the surgery removed part of the colon and part of the ileum of the small intestine. The patient was then taught how to manage the apparatus- skin barrier and pouch- while in hospital and continued under the supervision of a nurse practitioner while at home.
For cases involving extensive removal of the colon, The Encyclopedia of Surgery suggests the ileal pouch-anal anastomosis as a “surgical alternative to an ileostomy.” If the small intestine is healthy enough to attach it to the rectum, an ileal pouch is created and attached to the anal canal instead of to a stoma. A temporary ileostomy, however, is still required in order to “give the connected tissues time to heal.”
There are two types of ileostomies, permanent and temporary. In the same case that I'm most familiar with, anastomosis or resection to connect the healthy sections of the colon and ileum is feasible. However, an old study by the Mayo Clinic entitled Avoiding a stoma: role for segmental or abdominal colectomy in Crohn's colitis, has given cause to pause. The study reported that “total proctocolectomy and ileostomy for Crohn's colitis offers a low recurrence rate but commits patients to a permanent ileostomy. In contrast, segmental resection may predispose patients to recurrence and further surgery…” And there is always the fear of anastomotic leaks, one of the most dreaded complications; according to a 2007 study by Neil Hyman, MD et al, “the mortality rate for an anastomotic leak in the literature typically is in the 10% to 15% range.” And, according to a study by Syed Asad Ali et al, there are other complications such as "postoperative wound infection."
Living with an Ileostomy
As reported in a 2010 paper by Michelangelo Miccini et al entitled Ghost ileostomy: real and potential advantages, “patients hardly accept the quality of life resulting from (an) ileostomy.” I can tell you from personal observation that it can take up to two years to fully accept it; you can tell it's accepted when the patient names it. However, as a friend pointed out, “sometimes the devil you know is better than the devil you don’t.” It helps to consider the alternatives and what you were like before the surgery.
There are, however, several realities for a patient living with an ileostomy:
- It is like caring for a baby e.g. depending on the diet, the pouch may need to be emptied every hour or so, daytime and nighttime; and there can be accidents.
- It involves a learning curve e.g. there can be problems with the skin and the body shape around the stoma creating sealing issues.
- It is costly e.g. sealants and pouch systems can cost upwards of $200 per month
The bottom line, in most cases, is that a Crohn's patient will have suffered for many years and through several stages of the disease before opting for the surgery. In light of this, the benefits of an ileostomy, even if it's for life, should be weighed against the alternatives. Most, I suspect, would consider it a blessing.
Disclaimer: The information contained in this article is for educational purposes only and should not be used for diagnosis or to guide treatment without the opinion of a health professional. Any reader who is concerned about his or her health should contact a doctor for advice.
Sources:
- Evansville Ostomy News
- Ostomy Wound Management
- LP Prabhakar, C Nelson, RR Dozois. Avoiding a stoma: role for segmental or abdominal colectomy in Crohn's colitis. Mayo Clinic and Mayo Foundation. January 1997. Online
- Michelangelo Miccini, Stefano Amore Bonapasta, Matteo Gregori, Paolo Barillari, Adriano Tocchi. Ghost ileostomy: real and potential advantages. American Journal of Surgery. Volume: 200, Issue: 4, Publisher: Elsevier Inc., Pages: e55-e57. Online
- Neil Hyman, MD, Thomas L. Manchester, MD, Turner Osler, MD, Betsy Burns, NP, and Peter A. Cataldo, MD. Anastomotic Leaks After Intestinal Anastomosis. Annals of Surgery. 2007 February; 245(2): 254–258. Online
- Encyclopedia of Surgery
- Syed Asad Al et al. Postoperative Complications of Loop Ileostomy. JLUMHS. Jan-Apr.2009. Vol. 08 No. 01 Online
James Gibson - James Gibson is a retired teacher and small business owner. He is a published writer and has a wide spectrum of interests.
