What Does It Mean to Have IBD for a Lifetime? (2023)

Crohn’s disease and ulcerative colitis are two forms of inflammatory bowel disease (IBD). These conditions are considered immune-mediated, which means that they involve the immune system. There is a genetic component to IBD as well—hundreds of genes have been found which may be connected to IBD. These conditions last throughout your lifetime, although symptoms will come and go. There is no cure for any form of IBD, but it is often well-managed through medications, surgery, and complementary therapies. This raises questions for many people who are diagnosed with IBD as to how the disease may affect them during their lives.

What Does It Mean to Have IBD for a Lifetime? (1)

Crohn’s Disease

Some generalizations can be made about the prognosis for Crohn's disease but it is going to be different for every person. Crohn’s disease will cause mild symptoms for some and more severe for others. Most people will experience periods of active disease (flare-ups) and periods of remission (where there are few to no symptoms of disease). There is no cure for Crohn’s disease, though appropriate treatment can manage the disease well.

However, Crohn’s disease is not considered a fatal condition, nor does it shorten a person’s lifespan. There are cases where people do die from the complications of Crohn’s disease but for the most part, it is a chronic illness that needs management throughout a lifetime. Management includes seeing a physician (optimally, a gastroenterologist) on a regular basis and treating the disease with medication, complementary therapies, and lifestyle changes (usually some combination of all of these).

Surgery, however, is common in people with Crohn’s disease. Most people diagnosed with Crohn's disease will have surgery to treat their disease at some point in their lives. Approximately one-third of patients will have surgery in the first 10 years after diagnosis. Among the group that has surgery, 20% will need more surgery for their disease in the next 10 years.

People who live with Crohn’s disease in their colon, which is the form that’s called Crohn’s colitis, are at increased risk of developing colorectal cancer. The rate of colorectal cancer in people with IBD has been decreasing in recent years, which is thought to be a result of better management of the disease for many patients as well as better screening guidelines. Some of the risk factors that can increase the risk of colon cancer in people with Crohn’s disease include long-standing disease (which is often defined as eight to 10 years of inflammation), having one-third or more of the colon affected, and a family history of colon cancer. Other risk factors that are less common include a history of a liver condition associated with IBD, primary sclerosing cholangitis (PSC), and precancerous changes in the cells of the colon or rectum, which are found by examining a biopsy of those cells. While people who live with Crohn’s colitis have an increased risk of colon cancer, it’s important to remember that most people with IBD never develop colon cancer.

It is the“general consensus” that people with Crohn’s disease are at greater risk of developing small bowel cancer, but how much the risk is increased is not well understood. Small bowel cancer is rare even in the general population, so the absolute risk for people with Crohn’s disease is still thought to be low. Cancers in the small bowel have been found in people who have inflammation from Crohn’s disease in the small intestine and/or in the large intestine.

Crohn's Disease and Increased Cancer Risk

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Ulcerative Colitis

The prognosis for ulcerative colitis is also individualized and is affected by a number of different factors. There is no cure for ulcerative colitis, though the disease can be managed through medications and/or surgery. For most people, the prognosis for the first 10 years after diagnosis is good. Most people are able to achieve remission. 

The rate of surgery (which is a colectomy) to treatthe disease is low. It is estimated to be approximately 12% at 5 years after diagnosis and 15% after 10 years of diagnosis. However, this varies between studies. This rate is lowering over time as more people with ulcerative colitis are receiving treatment with biologic medications and suppressing inflammation long-term.

Ulcerative colitis begins in the last section of the colon and/or the rectum and in some cases, progresses up to the other sections of the colon. It’s estimated that in the 5 years after diagnosis, the disease progresses in 10% to 19% of patients. In the 10 years after diagnosis, this increases to up to 28% of patients. For about 5% to 10% of people with ulcerative colitis, the diagnosis may later be changed to Crohn’s disease.Ulcerative colitis doesn’t make a person more likely to die earlier than people who don’t live with the disease. However, the rate of disability in people who live with ulcerative colitis is higher.

People with ulcerative colitis are at an increased risk of developing colon cancer. Risk factors for colon cancer include earlier age at diagnosis, long-standing disease (eight years or more), and disease which extends further up into the colon, and a diagnosis of PSC. After eight years of disease, it may be necessary for those who are considered at greater risk of colon cancer to have a screening colonoscopy every one to two years. People with ulcerative colitis who are concerned about their risk of colon cancer should talk to their gastroenterologist about prevention and screening.

A Word From Verywell

The prognosis for IBD will depend on a number of different factors, including the severity of the disease, the age at diagnosis, and how well the inflammation is controlled.A key point to remember about living with IBD is that the inflammation needs to be controlled. It’s the inflammation in the digestive system and in other parts of the body caused by IBD that drives the risk for more serious disease and the related conditions that occur outside the digestive tract (extraintestinal manifestations). Managing IBD over the course of a lifetime requires the help of a gastroenterologist, as well as other specialists that may include a primary care provider, a colon and rectal surgeon, a mental health specialist, a dietitian, and others as needed.

6 Sources

(Video) Outperforming Crohn’s Disease | Analise’s Story | Weill Cornell Medicine

Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.

  1. Reindl W, Thomann AK, Galata C, Kienle P.Reducing perioperative risks of surgery in Crohn's disease.Visc Med. 2019;35:348-354. doi:10.1159/000504030

  2. Clarke WT, Feuerstein JD. Colorectal cancer surveillance in inflammatory bowel disease: Practice guidelines and recent developments. World J Gastroenterol. 2019;25:4148-4157. doi:10.3748/wjg.v25.i30.4148

  3. Cahill C, Gordon PH, Petrucci A, Boutros M. Small bowel adenocarcinoma and Crohn's disease: any further ahead than 50 years ago?World J Gastroenterol. 2014;20:11486–11495. doi:10.3748/wjg.v20.i33.11486

  4. Monstad I, Hovde O, Solberg IC, A Moum B. Clinical course and prognosis in ulcerative colitis: results from population-based and observational studies. Ann Gastroenterol. 2014;27(2):95–104.

  5. Ungaro R, Mehandru S, Allen PB, Peyrin-Biroulet L, Colombel JF. Ulcerative colitis. Lancet. 2017;389(10080):1756–1770. doi:10.1016/S0140-6736(16)32126-2

  6. Barnes EL, Jiang Y, Kappelman MD, et al.Decreasing colectomy rate for ulcerative colitis in the United States between 2007 and 2016: A time trend analysis.Inflamm Bowel Dis. 2019 Oct 21. pii: izz247.doi:10.1093/ibd/izz247

    (Video) IBD School 106 - Does Everyone Need Surgery?

What Does It Mean to Have IBD for a Lifetime? (2)

By Amber J. Tresca
Amber J. Tresca is a freelance writer and speaker who covers digestive conditions, including IBD. She was diagnosed with ulcerative colitis at age 16.

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(Video) David's Journey to Freedom from Ulcerative Colitis

FAQs

How long will IBD patients live? ›

According to the study, females with IBD may live from 6.6 to 8.1 years less than females without IBD. Males with IBD may live from 5.0 to 6.1 years less than males without the condition. The researchers suggested one reason for reduced lifespan could be the effect of pain on daily functioning.

Does IBD get worse over time? ›

Crohn's disease is a type of inflammatory bowel disease. It is a progressive condition, which means that it tends to worsen gradually. But symptoms can sometimes disappear for weeks or even years.

Is IBD a serious condition? ›

Although inflammatory bowel disease usually isn't fatal, it's a serious disease that, in some cases, may cause life-threatening complications.

Can you lead a normal life with IBD? ›

Living with Crohn's disease can be difficult at times, but there's no reason you cannot have a normal life if your symptoms are well controlled. There's no special diet for adults with Crohn's disease, but children may sometimes need a special liquid diet to control their symptoms. Aim to have a healthy, balanced diet.

Can you miss IBD on colonoscopy? ›

In some cases, the inflammation is patchy, meaning it only affects certain areas of the colon. This can happen in children or in those living with mild IBD. It may be difficult to see or biopsy these patches of colon, so it may take longer to diagnose IBD because it can be missed on colonoscopy.

Is spaghetti good for IBD? ›

Foods that are safe in ulcerative colitis are white bread, noodles, pasta, boiled white rice, crackers, and many more.

Is IBD a disability? ›

Inflammatory Bowel Disease is listed in the Social Security Administration's (SSA) impairment listing manual (more commonly called the “Blue Book”) as a condition that can qualify the patient to receive Social Security Disability benefits.

What are the 3 types of IBD? ›

What are the types of IBD?
  • Crohn's disease causes pain and swelling in the digestive tract. ...
  • Ulcerative colitis causes swelling and sores (ulcers) in the large intestine (colon and rectum).
  • Microscopic colitis causes intestinal inflammation that's only detectable with a microscope.
3 May 2021

Can IBD be caused by stress? ›

Stress induces the activation of the brain-gut axis, the hypothalamic-pituitary-adrenal axis (HPA axis), the autonomic nervous system (ANS) and the enteric nervous system (ENS), contributing to the development of inflammatory bowel disease (IBD) via dysbiosis, alterations of secretion and mobility, disruption of the ...

How does IBD affect daily life? ›

Results: A total of 599 patients with IBD (387 with Crohn's disease [CD] and 212 with ulcerative colitis [UC]) were enrolled. The majority of patients (81%) expressed feelings of fatigue, weakness, and being worn out in their daily lives during times of flare; this percentage was reduced to 61% during remission.

What can I eat with IBD? ›

Suggestions for first foods after a flare include:
  • Diluted juices.
  • Applesauce.
  • Canned fruit.
  • Oatmeal.
  • Plain chicken, turkey or fish.
  • Cooked eggs or egg substitutes.
  • Mashed potatoes, rice or noodles.
  • Bread – sourdough or white.

How long can you have Crohn's without knowing? ›

It may go undiagnosed for years, because symptoms usually develop gradually and it doesn't always affect the same part of the intestine. Other diseases can have the same symptoms as Crohn's disease. But doctors can diagnose Crohn's by doing a test that looks at the inside of the intestine and doing a biopsy.

What does IBD pain feel like? ›

Belly pain from ulcerative colitis can feel crampy, like a charley horse in your gut. It can happen before a bowel movement or while you're going. Other parts of your body might hurt as well. Some people with the disease have sore joints.

What causes IBD flare ups? ›

Common culprits include greasy or fried items, caffeine, alcohol, carbonation, spicy foods, raw vegetables, and some high-fiber foods like nuts, seeds, corn, or popcorn.

How do you get IBD? ›

The exact cause of IBD is unknown, but IBD is the result of a weakened immune system. Possible causes are: The immune system responds incorrectly to environmental triggers, such as a virus or bacteria, which causes inflammation of the gastrointestinal tract. There also appears to be a genetic component.

Does IBD show up in blood tests? ›

Blood tests can reveal several telltale signs of IBD. These include markers that indicate the immune system is causing inflammation and signs that you are anemic, meaning you have a low red blood cell count, which could be a sign of internal bleeding.

How do doctors test for IBD? ›

Colonoscopy. This exam allows your provider to view your entire colon using a thin, flexible, lighted tube with a camera at the end. During the procedure, small samples of tissue (biopsy) may be taken for laboratory analysis. A biopsy is the way to make the diagnosis of IBD versus other forms of inflammation.

Can you have IBD without bleeding? ›

In milder flare-ups the main symptom may be diarrhea or looser stools without blood. Very rarely, when the inflammation is severe, digestive gases may get trapped in the colon, making it swell up.

Can you live a long life with colitis? ›

If you have ulcerative colitis (UC), your life expectancy is pretty much the same as someone without it. Getting the right medical care is the key to preventing complications, including some that could be life-threatening. Medicine, changes to your diet, and surgery can help you stay well.

How long can you live with Crohn's? ›

Indeed, although Crohn's disease is a chronic condition — meaning ongoing and long term — research suggests that people with Crohn's usually have the same life expectancy as people without the condition, according to the Crohn's and Colitis Foundation.

Can I live a normal life with ulcerative colitis? ›

Most people with ulcerative colitis are able to live active lives. Controlling the disease usually means taking medications and seeing a healthcare provider on a regular basis. This article discusses the causes, symptoms, and treatment of ulcerative colitis.

How long does an IBD flare last? ›

Flare-ups might take days or weeks. Remission might last for months or even years. You may go from a mild flare-up to a severe one and back again. Or, it may get more advanced and spread to other parts of your colon.

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