About my IBD
There are different types of IBD. And there are different types of treatments and surgery. You may not know or understand all of the words that your doctor uses, but you can hover over words in bold for an explanation. So, before we begin, let’s talk about your IBD.
My doctor says that I have:
My doctor says that my IBD is:
My IBD causes ulcers, inflammation, bleeding or pain in my:
Not all IBD symptoms lead to surgery. Doctors recommend surgery for complications or severe symptoms. Sometimes doctors begin talking to you about surgery when medicines are not helping or are causing side effects.
Have you had any of the following in the past month? (check all that apply)
In the past six months, have you…
Talking about surgery options is confusing. Doctors often use big words. And IBD surgery may have more than one step.
Which surgical steps does your doctor recommend? (check all that apply)
You may have had IBD for years. Or you may be newly diagnosed. We want to make sure that you understand the different types of IBD treatments. Click on the tiles below to learn about IBD therapy options that you might want to discuss with your doctor.
Nutrition Therapy
Medical Therapy
Surgical Therapy
Key things to know
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Doctors recommend IBD surgery to help control or avoid these IBD related problems:
- Fistula, an abnormal or surgically made passage between a hollow or tubular organ and the body surface, or between two hollow or tubular organs. abscess, An abscess is a pocket of infection that develops in the adbdomen, pelvis, or anal area. stricture, Chronic inflammation can cause the walls of your digestive tract to thicken or scar. This can cause a narrow section of intestine called a stricture. Strictures can cause pain or even blockage of your intestines. infection, or wounds that won’t heal
- Frequent hospitalization for IV steroids or chronic steroid use
- Blood transfusions needed for chronic blood loss and anemia
- Failure to respond to medicines or nutrition therapy
- Diarrhea or pain that keeps you awake most nights
- Incontinence Fecal incontinence means having trouble controlling bowel movements. Stool may leak unexpectedly causing accidents in your underwear. This can range from leaking small amounts of stool when passing gas to complete loss of bowel control. (stool leaking into your underwear)
- IBD symptoms like uncontrolled diarrhea, pain, or fatigue Fatigue is a lack of energy and motivation that can be physical, mental or both. It can be described as feeling tired, exhausted, weary, run-down, or having not enough energy. can lead to depression and anxiety. Many patients feel that surgery helps them regain control of their lives.
- Removing the unhealthy part of your intestines does not cure IBD, but it can improve your quality of life by reducing your pain and the frequency and urgency of your bowel movements.
- You may still need to take some IBD medications to control symptoms such as joint pain or fatigue.
- Steroids may help control your symptoms, but they can weaken your bones (osteoporosis), stunt your growth, or suppress the adrenal glands (which regulate hormones). Steroids can also cause unwanted side effects like depression, weight gain, mood swings, acne, stretch marks or “moon” face.
- All surgeries involve some risk for complications. We’ll explore these in the FAQ section.
What is an ostomy?
Some IBD surgeries involve a having an ostomy.An ostomy changes the way stool exits the body. When a person has an ostomy, stool is passed through a surgically-created opening. This opening is called a stoma; it is made of intestinal tissue and is bright pink or red. A pouch is worn over the stoma to collect stool. This gives the body time to heal from inflammation or surgery. An ostomy can be temporary or permanent. Many IBD related ostomies are temporary. You may want to ask your doctor about the plan for reversing your ostomy before you have surgery. Click on these links to learn more about life with an ostomy.
FAQs
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bowel resection
The surgical removal
of an unhealthy section of the small intestine or large intestine (colon).
- small bowel resection – part of the small intestine is removed; the healthy ends are reconnected – part of the small intestine is removed; the healthy ends are reconnected
- large bowel resection – an unhealthy segment of the colon is removed; the two healthy ends are reconnected – an unhealthy segment of the colon is removed; the two healthy ends are reconnected
- ileocecal resection – the end of the small bowel (called the terminal ileum) and the first part of the colon (the cecum) are removed; the healthy end of the small intestine is sewn to the colon. – the end of the small bowel (called the terminal ileum) and the first part of the colon (the cecum) are removed; the healthy end of the small intestine is sewn to the colon.
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colectomy
Colectomy is the surgical
removal of your large intestine (colon).
- partial colectomy – part of the large intestine (colon) is removed. The healthy ends are reconnected. – part of the large intestine (colon) is removed. The healthy ends are reconnected.
- total colectomy – the entire large intestine (colon) is removed. The rectum is not removed. A temporary ostomy is formed. A plan is made to connect the healthy small intestine to the rectum in a later surgery. This plan may include a j-pouch. – the entire large intestine (colon) is removed. The rectum is not removed. A temporary ostomy is formed. A plan is made to connect the healthy small intestine to the rectum in a later surgery. This plan may include a j-pouch.
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ileostomy
An ileostomy brings the end
of the small bowel to the skin surface. Stool then drains from the small bowel through
an opening called a stoma into a removable ostomy bag attached to the skin's surface
with adhesive. An ileostomy is usually a temporary step while your body heals.
- colostomy A colostomy brings the end of the colon to the skin surface. Stool then drains from the colon through an opening called a stoma into a removable ostomy bag attached to the skin's surface with adhesive. A colostomy is often a temporary step while your body heals.
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j-pouch
J-pouch surgery involves removal of the colon and creation of a "pouch" made of small bowel tissue that is attached to the anus. You might have a temporary ileostomy to let the pouch heal completely. When the stoma is reversed, you will return to passing stool through the anus.
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anastomosis
Anastomosis is a surgical connection between two parts of your GI tract. For example, when part of the intestine is surgically removed, the two healthy ends are sewn or stapled together (anastomosed).
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strictureplasty
A stricture causes a section of the bowel to narrow; stricturoplasty surgery widens the narrowed area so that stool can pass more easily.
Check out these links for more information about IBD treatment options:
Many IBD patients who have surgery say that they have better quality of life. They have less pain, less bleeding, fewer hospitalizations, and better nutrition and growth. Anemia improves and patients have more energy to do the things they like to do. Fistulas and abscesses may heal. Surgery may even reduce or eliminate the need for some medicines like steroids or biologics (Remicade, Humira, etc.).
Choosing an ostomy is a big decision. It may take a while for you to decide or you may decide that you don’t want surgery. Either way, you should understand these risks:
- If medicines don’t help, you may continue to feel poorly.
- You may continue to miss school, work, or activities like sports, clubs or going out with friends.
- You may have medication side effects.
- In some cases, emergency surgery might be needed if your symptoms suddenly become worse.
You are unique. Your IBD is unique. And how your body responds to IBD treatment or surgery is unique, too.
Talking to your doctor about the general guidelines below will help you know what to expect from medical or surgical therapy options.
Medical and Nutritional Management
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Surgical Management
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| What's involved? |
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Recovering from surgery is different for everyone. These are general guidelines. You
should ask your doctor what you might expect.
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| What are the benefits? |
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| What are the risks and side effects? |
Every medication has some risks and side effects. Ask your doctor about the risks of your medication. Medications take time to work. Some may take weeks or months. You may continue to have symptoms while trying to find the right medication or dose. Your doctor may need to increase the amount or frequency of your dose. If you are on biologics(for example: Remicade, Humira, Entyvio, or Stelara) for IBD, this may mean more frequent infusions or injections. If symptoms suddenly get worse, you might need emergency surgery. Planned surgeries often have better recovery times. |
Every surgery has some risks including bleeding, blood clots, or infections. Short term risks of intestinal surgery:
Long term risks of intestinal surgery:
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What's Involved?
Medical and Nutritional Management
- Stay on your current medicine
- Try a new medicine if you or your doctor think it will help
- Try nutrition therapy such as:
special diet
-feeding by tube inserted through your nose (nasogastric or ng tube)
-feeding by iv through a vein (Total Parenteral Nutrition or TPN) - Some combination of these
Surgical Management
- Recovering from surgery is different for everyone. These are general guidelines. You should ask your doctor what you might expect.
- You may be in the hospital for 3-7 days; some people may be in the hospital longer.
- You may wake up from surgery with an ng (nasogastric) tube in your nose. This is temporary and can help reduce abdominal discomfort.
- Sometimes the small bowel “falls asleep” during surgery. This is called ileus. You may be on a low fiber diet until your small bowel “wakes up”.
- You can expect to have some pain. Your care team will give you pain medications through an IV or by epidural catheter .
- Your care team will have you try walking in 1-2 days after surgery.
- If you have an ostomy, a nurse will teach you how to change your bag and care for your stoma.
- You may need to continue taking medications to control IBD symptoms outside the gut.
What are the Benefits?
Medical and Nutritional Management
- avoid surgery and related risks
- feel better faster
Surgical Management
- relief from bowel obstruction
- relief from IBD associated pain
- treatment of fistulas and abscesses
What are the Risks and Side Effects?
Medical and Nutritional Management
Every medication has some risks and side effects. Ask your doctor about the risks of your medication.
Medications take time to work. Some may take weeks or months.
You may continue to have symptoms while trying to find the right medication or dose.
Your doctor may need to increase the amount or frequency of your dose. If you are on biologics for IBD, this may mean more frequent infusions or injections.
If symptoms suddenly get worse, you might need emergency surgery. Planned surgeries often have better recovery times.
Surgical Management
Every surgery has some risks including bleeding, blood clots, or infections.
Short term risks of intestinal surgery:
- Bowel leak (perforation)
- Bowel obstruction (blockage)
- Ileus (“sleeping” bowels)
- Dysmotility (abnormal bowel contractions)
- Fistula (abnormal bowel connection to the skin or another organ)
- Stoma complications (prolapse, retraction, skin irritation)
Long term risks of intestinal surgery:
- pouchitis (inflammation of the pouch) or other problems with the J-pouch
- vitamin deficiencies
- infertility can occur with J-pouch
Your thoughts and feelings are just as important as the medical facts. The statements below reflect thoughts that others have shared about having IBD surgery. These statements may help you better understand or say how you feel.
Think about what matters most to you in this decision, and show how you feel about the following statements. Check all that apply.
It is important to me that I feel…
It is important to me that I feel well enough to…
When I think about IBD Surgery...
When I think about the possibility of having an ostomy, I worry...
I feel pressure to make a certain choice.
No
You may experience uncomfortable feelings or thoughts when you think about IBD surgery.
You should talk to your parent, doctor, or nurse about any questions, fears or expectations that you have about surgery.
Sometimes it can help to talk with a mental health professional. Ask your doctor to help you find a therapist or psychologist.
You may even want to talk or another person who has had IBD surgery. you can find support at these links:
We all need help making big decision sometimes. You may want to have a say in medical decisions. You may want to let your parents decide. Or you may simply want to follow your doctor’s advice.
In shared decision-making, the patient, family and care team work together to decide the best form of treatment. Let’s explore who might help you make the decision about IBD surgery.
What role do you want to take in making the decision?
Is there someone else that you’d like to talk to about this decision?
Do you want to get advice from another medical professional? People facing any kind of surgery often ask for a second opinion. Ask your doctor to support you by making a referral.
If you want more information about IBD, we recommend the following websites:
We hope that completing this tool makes it easier for you to talk to your care team about your feelings, about finding additional decision support, or about what your next steps should be. While you don’t have to make a decision today, we’re going to wrap up with a few final questions before you save and print your answers.
Do you know why your doctor is recommending surgery for you?
No
Do you know when you need to make a decision?
No
Do you understand the options available to you?
No
Are you clear about which benefits matter most to you?
No
Are you clear which risks matter most to you?
No
Do you have enough information, advice and support from others to make a choice?
No
Now that you've thought about the facts and your feelings, you may have an idea of what your decision may be. Show which way you are leaning right now.
- Having Surgery
- Not having Surgery
Check what you need to do before you make this decision.
Use this space to ask questions, share concerns, or list next steps.
Remember we don’t save copies of your answers, so be sure to print or save a copy.
We
encourage you to share a summary with your family, doctor, nurse, or other people on your care team.