Charlie Burke has developed a thick skin when it comes to cancer. After surviving bouts with colorectal, thyroid and skin cancers, he was well acquainted with the routine of doctor’s appointments, hospital visits, surgeries and regular treatment that accompany disease by the time a GIST tumor was discovered in his colon. However, as any of our members will tell you, GIST comes with its own unique lexicon to master and set of challenges to overcome.ostomy

Coping with a diagnosis of GIST can be stressful for both the patient and caregiver. Since surgery is considered the gold standard of treatment for a primary tumor, a diagnosis of GIST in the colon or rectum can be especially stressful, as the potential for a temporary or permanent colostomy is possible. GISTs arising from the colon are rare (about 2%), but about 20 percent of GISTs do originate from the jejunum or ileum. The small and large bowels are basically hollow tubes. Therefore, a segment where a GIST is growing may be removed and the cut ends reattached.

A colostomy refers to the creation of a new exit for solid waste matter by routing the colon to exit the body through a surgically created opening (stoma) through the abdominal wall. A collection bag is attached to abdomen in a permanent colostomy.

Undergoing any surgery can be stressful after a GIST diagnosis. Procedures that involve an ostomy can cause additional stress for the patient and the caregiver as the reality of dealing with the day-to-day management can be overwhelming. The idea of having such an extreme change in what has been a routine bodily function can be frightening and confusing for the patient as well. The reality of dealing so directly with waste material, and the physical changes of having a stoma on the abdomen leave most patients with a high level of fear and anxiety. After receiving a colostomy as a result of his colorectal cancer, the transition period was something Charlie was coached through with the support of an ostomy nurse assigned to him at Massachusetts General Hospital.

Although having the colostomy did not interfere with the removal of his GIST tumor, like many GISTers, Charlie has since had to navigate the tricky path of learning which foods are able to be better tolerated and how to restructure his diet to be compatible with his new circumstances.

It is vital to become thoroughly informed on the practical aspects of this change and what it means for daily living, including:

  •  Differences in colostomy pouching systems, how they work, and which one is best for you.
  • How to change and empty your colostomy bags or pouches and how to maintain the area around the stoma to avoid skin irritation or infection.
  • How to develop a routine.
  • How to prepare for “accidents” and how to minimize their occurrence.
  • Strategies for dealing with emotional issues, including developing a strong support system
  • Where to go for support to share your concerns with others.

Having a circle of care that includes a GIST specialist, your medical team, support from other GIST patients and utilizing ostomy resources available can help to alleviate these fears and concerns. Now over a year past his GIST surgery, Charlie acts as a support counselor for others going through the ostomy process at his local hospital as well as serving as the Life Raft Group’s Massachusetts state leader.

Making the adjustment to life with a colostomy may seem impossible, but sharing your fears and concerns with others can help to make the adjustment easier. It may take some time, but you don’t have to do it alone. GISTers looking to connect with Charlie about his experiences may contact him at cfxburke@aol.com. More information on ostomies in general can be found at www.ostomy.org.