Frequently asked questions of people
with the ileo-anal pouch

by Grace Williams, RNC, ET

Ms. Grace Williams is an registered Enterostomal Therapy (ET) nurse who scrubbed in on one of the first pouch surgeries performed in Philadelphia over 12 years ago. Soon afterward, along with Dr. Moreye Nusbaum, she started the first ileoanal support group in the country. This group continues to meet on a monthly basis.

Last year, Grace retired from her ET position however remains actively involved with the Crohn's and Colitis Foundation. She is the professional leader of the ileoanal support group and has provided a helping hand to many individuals considering and undergoing pouch surgery.

1) What can I eat once I have my "pouch" ?

• Almost any foods. It is trial and error. Try small amounts of foods for any reaction. Anything in moderation. If you had a lactose intolerance before surgery, it may persist afterward, but medication like Lactaid can help.

See our Dietary Guidelines

2) Will I have a normal sex life?

• Both men and women should be able to resume a normal sex life following surgery. There is a very small risk of injury to males during surgery which could cause impotence. Over 10 years in our support group, no men have experienced sexual difficulty following surgery. Women have become pregnant and have delivered healthy babies both by C-section and through vaginal delivery.

3) Will I have to take medications?

• Not necessarily. Most people taper off steroids within weeks of surgery. However, if you have been on steroid therapy for a prolonged time, low dose maintenance may be needed. Some people require medication or fiber therapy to decrease the number of stools per day. The surgery is the cure!

4) Will I ever get ulcerative colitis again?

• No, the surgery plus removal of the mucus membranes in the anal area removes this problem. If there is no colon, you can't have colitis. Removing the colon also takes away the chance of colon cancer. However, there may be a small amount of rectal tissue that remains after surgery that should be checked periodically by your surgeon.

5) How many bowel movements can I expect?

• In the early weeks there can be 8-10 stools per day (some people initially have more) but as the pouch matures (usually in 3 to 6 months- in some people longer) the number diminishes to an average 5-6 stools per day. Also foods can effect the number of movements each day.

6) Is the surgery painful?

• There is the usual post-operative pain in the incision however medication can control the amount of pain. The pain subsides considerably over the first 3 days post operatively. After that there is gradual tapering of pain medicine. Most people find that they no longer need pain medicine after a few days at home.

7) Do any people having the pouch regret it?

• Most patients having had this surgery are very satisfied. Almost all persons who chose this surgery would choose it again if given the choice. No more pills, no pain, no bloody diarrhea. Many people talk about "waiting for the other shoe to drop" (the next attack as it were) because they have gotten so used to living with the disappointments of chronic illness. As time passes you get past the feeling that disappointment is just around the corner. Forget it, it's out of here. This is your new life.

8) Are there complications?

• Yes, complications are possible. People can develop adhesions, blockages (due to food not well chewed), fistulas, and strictures, pouchitis- all of these are treatable. Extremely rare is an anastomosis leakage, which may require a temporary ileostomy while the area heals and then closing the ileostomy and letting the pouch function again.
  Your surgeon will make all attempts to prevent any problems but problems can occur. Remember to keep in contact and with your surgeon, gastroenterologist and ET nurse and ask questions!

For More J-Pouch Questions and Answers, please see our Q & A page.

Remember: Some of your questions and answers may be posted anonymously.

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