# Handbook of Genetic Counseling/Colon Cancer Prophylactic Surgery

Colon Cancer Prophylactic Surgery

## Basic Definitions

* Colon- the large intestine. Starts at the cecum which connects to the ileum and ends at the anus.
* Ilieum- the last section of the small intestine. It connects to the large intestine at the ileocecal opening.

## Types of surgery
### Colectomy with ileorectal anastomosis (IRA)

* Definition:
** The removal of the colon leaving the rectum intact, and attaching the ileum to the rectum. Usually involves a temporary ileostomy (see below).
* Advantages:
** Reduces risk of developing colorectal cancer by 80%
** Maintains rectal function
* What patients can expect:
** 3-hour surgery.
** 7-day hospital stay.
** >5 stools a day immediately following surgery. Avg. of 3-4 stools a day after adjustment.
** After surgery, you can't eat until bowel function resumes.
** Seepage (inadvertent passing of liquid through the anus)
** Incontinence (inadvertent passage of stool through the anus)
** Antidiarrhea medicine is necessary in 14%.
* Possible Complications:
** Occur in 15-20% of patients.
** Small-intestine obstructions
** Hemorrhage
** Bloating, cramping, and abdominal pains are rare
** Anastomosis may leak or fail = permanent ileostomy needed
* Disadvantages:
** Rectum is still present and risk of rectal cancer is high
** May need an IPAA later on.

### Proctocolectomy w/ ileal-pouch anal anastomosis (IPAA) also called ileoanal reservoir (IAR)

* Definition:
** The removal of the colon and rectum and creation of a pouch connected to the ileum. The pouch is then connected directly to the anal canal. ALWAYS requires a temporary ileostomy.
* Advantages:
** Reduces risk of developing colorectal cancer by ~100%.
** Removes all the large bowel mucosa and entire rectum.
* What patients can expect:
** Two separate surgeries
** Hospitalization for several weeks, discharged to go home, then return for completion.
** Stool average 5-6 times a day after adjustment
** Gas and bowel movements are more odorous
** They may feel the reservoir filling up while eating
** There may be more noticeable bowel sounds.
** Mucous discharge from the anus
* Possible Complications:
** Occur in 28-61% of cases
** Functional difficulties because of lack of mucosa
** Failure of pouch
** Anastomosis leakage or failure = formation of permanent ileostomy
* Disadvantages:
** Removes all rectal function
** Can't be done if there is a weak or damaged anal sphincter
** Requires temporary ileostomy for 2+ months

### Ileostomy

* Definition:
** The presence of a hole in the abdomen through which the ileum is pulled through. It allows the contents of the small intestine to drain directly out of the abdomen.
* What patients can expect:
** Wearing a pouch on the outside of the body
** Discharge is continual and watery
** Skin irritation
** Passing of blood clots (sticky black tar) that smell really gross for the first few days
** Gas is noisier from a stoma
** Male erectile dysfunction (rarely)
** Lack of sexual interest
** Changes in body image, self-esteem, and social relationships
** A period of adjustment
* Good news:
** Daily activities will return to normal
** Sexual drive will increase
** No clothing restrictions
** Quality of life is reported to be good

### Colostomy

* Definition:
** The presence of is a hole in the abdomen through which a portion of the colon is pulled through. It allows the contents of the large intestine to drain directly out of the abdomen. More colon left = more solid the discharge will be.
* What patients can expect:
** Same as for an ileostomy
** Considerations for Surgery

### Presence of familial adenomatous polyposis (FAP)

* No other alternative than removal of the colon to get ride of polyps.
* Penetrance risk is ~100% for colorectal cancer
* Large risk of rectal polyps
* Cancer usually develops by late 20s-early 30s.
* Surgery should be done in late adolescence-early adulthood = dealing with young people who may not be diligent in their follow-up screening
* 16% risk for desmoid tumors from the surgery

### Presence of hereditary nonpolyposis colorectal cancer (HNPCC)

* Lifetime risk of 80% for colorectal cancer
* Polyps in HNPCC are flat and plaque-like and can be missed during screening

### Patient specifics

* Age
* Sphincter function
* Bowel function
* Presence and chance of other cancers

### Patient preference

* Compliance for screening
* Cost effectiveness
** Changes in diet:
** For all surgeries listed above, the following apply:
* Eat foods high in fiber
* Increase fruit and vegetable consumption
* Avoid foods that cause a high amount of gas: beans, cucumbers, carbonated beverages
* Avoid foods that cause odors: asparagus
* Eat yogurt, applesauce, or buttermilk to manage the odor better.

## Additional References

* Church JM et al. Quality of life after prophylactic colectomy and ileorectal anastomosis in patients with familial adenomatous polyposis. Dis Colon Rectum. 1996 Dec;39 (12) 14404-8.
* Duijvendijk P et al. Functional outcome after colectomy and ileorectal anastomosis compared with proctocolectomy and ileal pouch-anal anastomosis in familial adenomatous polyposis. Ann Surg. 1999;230 (4) 648-54.

### Colostomy

* Definition:
** The presence of is a hole in the abdomen through which a portion of the colon is pulled through. It allows the contents of the large intestine to drain directly out of the abdomen. More colon left = more solid the discharge will be.
* What patients can expect:
** Same as for an ileostomy
** It looks like a red bubble - the color of the inside of your mouth.
** It does not allow water to enter = take showers and baths, swim how you want to.
** Spouses and loved ones feel depressed and scared = need to be involved in the whole process of adjustment.
** Things patients need to know about stomas:
** They may feel weakness, fragility, unattractiveness.
** People's reactions to the stoma will reflect what you tell them and how you perceive it yourself.
** You can wear any clothing you want, aside from clothes that expose your abdomen like bikinis or crop tops.
** You can determine who you want to be aware of your stoma. Tell whoever you want but be aware that if you get into intimate situations, your partner may find it strange if they discover it themselves.
** Some people see the stomy as a physical mutilation, others see it as a preferable option to death.
** Perceptions of sexual function following the surgery. Some men have erectile dysfunction following surgery.
** disgust, anxiety, depression, and isolation feelings are common.
** Fear of stool leakage and odor, changes in physical appearance, changes in intimate relationships.
** There will be a period of adjustment in which the person will be having multiple stools and feel out of control.
** There can be irritation and they may want to use medicated rectal wipes to protect their skin.
** When the pouch starts to work, you will pass blood that looks like black tar and smells like rotten meat. It is basically a great big blood clot. You will get a little cramp and then this stuff comes out. It goes on for the first few days.
** Gas and bowel moevemnts stink more than you may be used to.
** They may feel the resorvoir filling after eating and there may be more noticeable bowel sounds.
** devastating, dirty, depressing and nightmare were all words that people have used as they adjust to the pouch.
** Give yourself time to heal. It takes time to adjust and they will be dealing with the care of a stomy when they are very stressed out and fatigued.
** For the first time ever, the possibility of death comes up…the surgery brings up ideas of the fact that life is not forever.
** fear of rejection, low self-esteem
** Noisier gas from the stomy.
** Greater mucous discharge from anus with the IPAA
** Some people may feel uncomfortable being seen by their parents during sex = wear a t-shirt or nightgown during sex. Wear a pair of pants with the crotch cut out.
** BUT- after adjusting, you can do anything…no physical restrictions, everything goes back to normal and you just have to go to the bathroom more often.

## Notes

The information in this outline was last updated in 2000.