I’ve had a J-Pouch for 22 years, with chronic pouchitis. I’ve been on Cipro for many years and have regular anal and top-end j-pouch strictures that need dilating. Long story short, my j-pouch is not working well and I’ve been quite sick for three months.
My gastroenterologist tells me that my best (and probably only) option is to have the j-pouch removed and an ileostomy done.
Can you please give me some information about this surgery – risks, complications, advantages, challenges? I’m hoping the surgery will make me feel a lot better than I do now. Many thanks for any assistance & information you can offer.
What is an ileostomy?
An ileostomy is a surgically made opening that connects your ileum to your abdominal wall. The ileum is the lower end of your small intestine. Through the abdominal wall opening, the lower intestine is stitched into place. The opening created is called a stoma. You will then wear ostomy equipment which includes a pouch. The pouch will collect all of your digested food.
Having an ileostomy will affect the type and consistency of stool. Your colon normally absorbs water so when some or all of the colon is removed or bypassed, water may not be absorbed from the stool as usual. The stool from an ileostomy is mostly liquid because it doesn’t travel through the colon, which would normally remove most of the water.
Preparing for an ileostomy
Make sure your doctor knows which supplements, medications, and herbs you’re taking. Many drugs affect the function of the intestine by slowing it down. This applies to over-the-counter as well as prescription medications. Your doctor may tell you if deemed important to stop taking certain drugs two weeks before your surgery.
Follow your surgeon’s instructions regarding diet in the days prior to surgery. At some designated time, they may advise you to switch to clear liquids only. You’ll be advised not to consume anything, including water, for about 12 hours before surgery.
Your surgeon may also prescribe laxatives or enemas to empty your intestines.
Before surgery, tests will be done to check your general health. Blood tests, a chest x-ray and an electrocardiogram (ECG) may be done to check the health of certain organs.
Your healthcare team will tell you if you need to follow a special diet before surgery. They will also tell you when to stop eating and drinking before surgery.
Your surgeon or ostomy nurse, (Nurses Specialized in Wound, Ostomy, and Continence [NSWOCC] are registered nurses trained specifically to design and implement meticulous, evidence-informed care plans for patients with wound, ostomy and continence challenges), will usually mark the abdomen where the stoma will be, to make sure it is in a convenient and comfortable place. Your surgeon or healthcare team may also discuss the type of pouch that you will need to use after the surgery. You may be given antibiotics before surgery to help prevent infection.
An ileostomy is done in a hospital under general anesthesia.
After you’re unconscious, your surgeon will either make a cut down your midline or perform a laparoscopic procedure using smaller cuts and lighted instruments. You will know prior to the surgery which method is recommended for your condition.
The surgeon makes a small incision that will be the site of your ileostomy. They’ll pull a loop of your ileum through the incision. This part of your intestine is turned inside out, exposing the inner surface. It’s soft and pink, like the inside of a cheek. The part that sticks out is called a stoma.
Side effects can happen with any type of surgery, but everyone’s experience is different. Some people have many side effects. Other people have few or none at all.
Side effects of an ileostomy include:
- blood clots
- a hernia near the stoma
- the stoma falling into the abdomen
- the intestine coming out of the stoma more than expected (called prolapse)
After surgery, you will need to stay in the hospital for several days. You will be given pain medicines to keep you comfortable. You will drink clear fluids for 1 to 2 days after surgery. Solid foods will be introduced slowly.
The stoma is usually swollen right after surgery. There is no feeling in the stoma so it will not hurt if you touch it. There are many blood vessels on the surface of the stoma, so it may bleed a little if you rub or wipe it too hard.
When you have an ileostomy, you can’t control your bowel movements. You will need to wear a pouch system over the ostomy all the time.
While you are in the hospital, an ostomy nurse, (NSWOC), will teach you how to live with and care for the ostomy. Before you go home, the healthcare team/NSWOC, will talk to you about:
- changing the bandages or dressing
- showering and bathing
- how and when to take any medicines
- eating and drinking
- physical activity
- what to do if you have problems
- when to visit the surgeon for follow-up
Managing your diet after ileostomy surgery
You may need to make some changes to your diet to help you manage the following problems.
Gas can be caused by certain foods and drinks. It can be difficult to control and is sometimes embarrassing. You can help control gas by eating regular meals and chewing your food slowly. You may also want to limit foods that can cause gas, including dried beans and peas, broccoli, cabbage, onions, strong cheeses, and carbonated drinks.
Certain foods can cause odour from the pouch or ostomy appliance. You may want to limit foods that can cause odour, including onions, cabbage, garlic, fish, eggs and fried foods.
Some foods, including yogurt, buttermilk and parsley, can help control odour.
Talk to your NSWOC (Ostomy Nurse), if you are concerned about odour from the pouch.
Blocked or irritated stoma
Sometimes the colon or ileum can become narrow near the stoma. Certain foods may get stuck in the narrowed part of the colon or ileum and cause an obstruction (blockage). These same foods could also make the stoma swollen and irritated.
Drinking extra fluids can help prevent an obstruction. You may also want to limit foods that tend to block or irritate the stoma, including nuts, popcorn, coconut, corn, celery, apples with the skin and foods with seeds, such as raspberries, strawberries and tomatoes.
Tell your doctor or healthcare team right away if you vomit or feel nauseous and nothing is coming from the stoma. You may have a blockage.
Recovery from ileostomy
You’ll typically need to stay in the hospital for at least three days. It’s not uncommon to remain hospitalized for a week or even longer.
Your food and water intake will be limited for a while. On the day of your surgery, you may only get ice chips. Clear liquids will probably be allowed on the second day. Slowly, you’ll be able to eat more solid foods as your bowels adjust to the changes.
In the early days after surgery, you may have excessive intestinal gas. This will decrease as your intestines heal. Some people have found that digesting four to five small meals per day is better than three larger meals. Your doctor may suggest that you avoid certain foods for a while.
During your recovery, whether you have an internal or external pouch, you’ll start to learn how to manage the pouch that will collect your waste. You’ll also learn to care for your stoma and the skin around it. Enzymes in the discharge from your ileostomy can irritate your skin. You’ll need to keep the stoma area clean and dry.
There will certainly be some lifestyle changes, and in the beginning you will have questions, therefore, I highly recommend that you connect with your local ostomy support group. Meeting other people who’ve adjusted their lifestyles after this surgery and have managed to return to their regular activities can ease any anxieties you have.
In addition – you can connect with an NSWOCC , they’ll ensure that you have a manageable lifestyle with your ileostomy.
Once you learn to take care of your new elimination system, you’ll be able to participate in most of your regular activities. People with ileostomies:
- play sports
- eat in restaurants
- work in most occupations
Heavy lifting can be a problem because it can aggravate your ileostomy. Talk to your doctor if your job requires heavy lifting.
Having an ileostomy doesn’t usually interfere with sexual function or the ability to have children. It might require you to educate your sexual partners, who might be unfamiliar with ileostomies.
Wishing you a speedy recovery, as you regain your quality of life!
Our friends over at Nurses Specialized In Wound, Ostomy And Continence Canada [NSWOCC] (formerly called The Canadian Association for Enterostomal Therapy (CAET)) have renamed their handy look-up page on their website. It was formerly called “Find An ET Nurse” and is now called “Find a NSWOC“. Click on the image to the left or link here to go to their site.