- Loss of Appetite and Weight Loss
- What are some reasons for poor appetite?
- How common is weight loss in people with IBD?
- How is weight loss evaluated?
- How is weight loss with IBD treated?
- People with Crohn’s Are Tired of Hearing These Things About Their Weight
- Nutrition and Crohn’s Disease
Loss of Appetite and Weight Loss
Weight loss is a typical symptom of the inflammatory bowel diseases of Crohn’s disease and ulcerative colitis. Weight loss is an indication of malnutrition caused by not getting enough calories to meet your needs. There are many reasons why this happens, including:1,2
- Poor appetite
- Food aversions
- Increase in the calories your body burns to fight the disease and its complications
- Nutrient losses due to diarrhea or intestinal bleeding
An older study showed that people with Crohn’s disease who had lost weight reported lower levels of hunger and less pleasure from eating than people who had not lost weight.3 The people who lost weight reported that they had eliminated an average of 16 of 52 food items. This restriction resulted in a low-calorie intake. Interestingly, in this study, many of the foods had been eliminated at the advice of treating physicians.
Currently, there is no general recommendation on which foods to eliminate.4 Inflammatory bowel disease (IBD) is different for every person. Too many unnecessary restrictions can make it hard for you to have a balanced and nutritious diet. Instead, you and your health care team should figure out what foods you tolerate best.
What are some reasons for poor appetite?
Appetite loss is reported in about 1 in 5 people with Crohn’s disease and in about 1 in 10 people with ulcerative colitis.5 Unsurprisingly, problems with appetite in people with IBD are worse during flares. For most people, appetite improves during remission. One small study compared hunger between people with active Crohn’s disease, inactive Crohn’s disease, and no Crohn’s disease. The people with active Crohn’s disease reported feeling less hungry than the other 2 groups at baseline and after drinking 500 mL (~2 cups) of water.6
There are many reasons for loss of appetite in IBD. Some people may develop food aversions because they associate eating with pain.7 After a while, you may try to avoid eating in order to avoid pain or unpleasant symptoms. Depression is common among people with IBD and can lead to a loss of appetite.8 Some medications and nutrient deficiencies cause taste changes.7 If your food tastes off, you may be less interested in eating it.
Inflammation and hormone changes probably have a role in poor appetite. IBD changes the levels of hormones such as leptin and ghrelin.2,9 These hormones have a role in making you feel hungry or full. They also seem to be out of balance in people with active IBD.2,9 An increase in inflammatory signals, such as tumor necrosis factor-α (TNF-α) and interleukins, has been linked with poor nutritional status.10 More research is needed to understand how these factors work together.
How common is weight loss in people with IBD?
Weight loss is very common in people with IBD. One study found that as many as 80% of people who are hospitalized for Crohn’s disease lose weight. Outside the hospital, about 20% to 40% of patients also have weight loss. Weight loss is frequently seen in children with IBD, and weight loss is present at the time of diagnosis in 90% of children with IBD.2
How is weight loss evaluated?
It is not possible to fully evaluate a person’s nutritional status from one weight measurement alone.11 It is important that your provider or dietitian tracks your weight over time.
There are many possible ways to evaluate weight loss. For adults, a common way is to evaluate the percentage of weight loss over a certain period of time (Table).12 Your provider or dietitian may also calculate percentage of usual body weight or percentage of ideal body weight. For children, weight and height are tracked on a growth chart. This can help the provider see your child’s pattern of growth. Your child’s provider will identify any changes in the growth pattern.
Table. Severity of Weight Loss
x 100% = Percentage of weight loss
Source: Blackburn GL, et al. JPEN J Parenter Enteral Nutr. 1977;1:11-22.
How is weight loss with IBD treated?
Depending on the circumstances, normal foods, tube feeding, or intravenous (IV) nutrition may play a role in treating weight loss. Tube feeding (enteral nutrition) is an effective way to start remission in children with IBD.2 It also is beneficial for some adults. Tube feeding can be done by inserting a thin, hollow tube through your nose into your stomach or small intestine. A nutrient-rich formula flows through the tube. Intravenous nutrition (also called total parenteral nutrition or TPN) is an option when the digestive tract cannot be used.
No single diet of regular foods has been shown to treat IBD. In general, you should aim for a normal, healthy diet as much as possible.11 You can tailor your diet based on the foods that trigger your symptoms. This varies from person to person, and even from one flare to the next.4 You may need to eat differently during a flare than during remission. During remission, most people with IBD have a good nutritional status.2
People with Crohn’s Are Tired of Hearing These Things About Their Weight
Weight is an emotionally charged subject for many people. For those living with Crohn’s disease, it’s an even more difficult topic, as weight loss and gain aren’t always in their control.
Between flare-ups, courses of steroids, and sometimes even surgery, fluctuations on the scale are a somewhat inevitable part of living with the condition.
One thing that certainly doesn’t help? Judgmental, hurtful, and rude comments from those who don’t really understand what they’re going through.
We asked people in our Crohn’s community on Facebook and some Crohn’s advocates and bloggers:
What do you wish others knew about your experience?
Often times, people don’t realize that what they say about the weight of someone in the throes of a Crohn’s diagnosis can have a serious impact on that person’s self-esteem — especially when eating itself has become a painful process.
“One of the biggest things I had to go through when I got Crohn’s was the drastic weight loss,” wrote Vern, a Crohn’s advocate and blogger behind Leaving the Seat Down. “When I say drastic, it came hard and fast. It was scary at the time, and there was nothing I could do about it. I just stopped eating. It hurt way too much after I ate. I had dropped so much weight, at one point a stranger on the street asked if I had AIDS. Keep in mind, this was the late 80s and AIDS was a big ‘thing’ then. That comment hit hard for me and I didn’t want to go outside anymore. I didn’t want anyone to see me.”
There’s also a common misconception that being “skinny” is a silver lining of having Crohn’s.
Some people even go as far as to say ‘I wish I was as thin as you.’ “No. You don’t. Not like this,” says Lori V., a Healthline community member.
“One of the common comments I get is: ‘At least having Crohn’s means you’ll always be skinny!’”says Alexa Federico, author of the blog Girl in Healing and the book “The Complete Guide to Crohn’s Disease & Ulcerative Colitis: A Road Map to Long-Term Healing.”
“It’s frustrating, because our society is conditioned to believe skinnier is better. I remind myself that if they knew how hard I worked to gain and maintain my weight, they wouldn’t make those comments. They simply don’t understand the scope of Crohn’s disease and I use that as an opportunity to politely educate them.”
Worst of all, there are times when people make observations about how the disease might help them lose weight — even going as far as saying that they wish they had it so that they could shed some pounds, too.
“No, you really don’t,” said Healthline community member Haley W. “I’ve been down to almost skeletal, couldn’t stand up straight, too scared to laugh or cough or sneeze. But it’s all good because I lost weight? Nope!”
“I was once talking about how I couldn’t eat and a friend said ‘I wish I had that problem,’” Julianna C., a Healthline community member shared. “So ignorant.”
While it’s very common for these comments to revolve around weight loss, people also make the mistake of not understanding that people with Crohn’s are all different shapes and sizes.
“When I was first diagnosed, a coworker told me that the doctor must been wrong because, ‘You’re too fat to have Crohn’s,’” — Pamela F., Healthline community member.
Occasionally, this shaming comes in a subtler form: “You don’t look sick.”
“I had a boss tell me that one time and I went to the bathroom and cried,” Kaitlin D., a Healthline community member said. “People can be so inconsiderate!”
Plus, many people experience fluctuations in both directions, which can also draw attention.
“As someone who’s battled Crohn’s disease for nearly 13 years, I have received my fair share of comments regarding my weight — from both sides of the spectrum,” says Natalie Hayden, Crohn’s activist and author of Lights Camera Crohn’s. “Prior to my diagnosis, when it was painful to eat, the weight was falling off of me. People would make comments about how gaunt I looked and how it must be nice to be so thin. Then, as I’ve been put on steroids to manage flares, I’d put on a few pounds from retaining water and salt. As a former news anchor, when I would return after a couple weeks of steroids, viewers would question if I was pregnant. As time goes on, hearing the comments doesn’t get easier, but you tend to gain a thicker skin.”
“After I was diagnosed, I was judged for how underweight I had gotten. People were saying that I needed to eat more, even though I physically couldn’t. And if the person knew that I had Crohn’s, they would judge me for the types of foods I was eating, telling me that I shouldn’t eat them, even if it was the only thing I could eat without getting sick. I feel like I can’t win sometimes when it comes to food talks,” Kirsten Curtis tells Healthline.
“I remind myself that if they knew how hard I worked to gain and maintain my weight, they wouldn’t make those comments.” — Alexa Federico
Next up, there are those people who think that they know the best way for people with Crohn’s to eat to manage their weight, even if they really have no idea what eating with Crohn’s is like.
“I find all the unsolicited advice or assumptions to be kind of hurtful — like when people assume I want their advice on what diet or supplement to try, or they just flat out assume I can’t eat gluten because I must have celiac, and they refuse to pass the rolls or bread and pick apart whatever is on my plate,”Katie C., a Healthline community member said.
Even if the comment is coming from a well-intentioned place, it’s not appropriate. “They mean to be helpful, but they aren’t actually considering me as an individual, and that’s why it’s less helpful.”
There are also comments like: ‘Can you eat that?’ ‘Have you tried X diet?’ ‘You should get an allergy test done.’ “As if eating isn’t enough of a minefield,” Rosalie J., a Healthline community member said. “I know how to justify my choices to someone who obviously has no understanding of the disease!”
“One type of comment that bothers me is the, ‘Maybe you should give up dairy, soy, gluten, nightshades, meat, eggs, fruits, and processed foods because my friend’s cousin’s neighbor did it…’ Well that excludes most foods I can eat safely, so do you suggest I live off of water and sunlight?” Jaime Weinstein, an IBD patient advocate sharing her IBD journey at CROHNicleS, tells Healthline.
And then there’s this gem: “‘A raw food diet will cure you.’ Kill me, maybe,” Gail W., a Healthline community member, said.
The bottom line here? It’s never a good idea to comment on someone’s weight in any situation — but especially if they’re dealing with a chronic illness that may affect their weight, such as Crohn’s.
Even if you think you’re complimenting them, commiserating with their struggles, or saying something that you feel is more about your own weight than theirs, it’s clear that remarks related to weight, food, and diet are more likely to make someone with Crohn’s feel worse rather than better.
And if you yourself are dealing with comments of this nature being directed at you, there are some productive ways to deal with it.
“I like to reply with: ‘I would trade my weight for not having Crohn’s any day!’” says Federico. “I’ve found by using polite but direct ways, I can get my message across, and it usually ends with the other person agreeing with me.”
It can also be helpful to understand that the comments are generally coming from a place of ignorance rather than cruelty.
“Our society is obsessed with appearance and body image. If you’re living with IBD and someone makes a comment about your body, (if you are comfortable) I always recommend taking time to explain to them what it actually means to live with this disease so they can understand why it is hurtful to make this type of comment,”says patient advocate Lilly Stairs.
“I like to give people the benefit of the doubt and try not to think of their words as malicious,” Hayden explains. “Rather than smiling or laughing along with the comments, communicate with friends and family and teach them about how the disease impacts you physically, mentally, and emotionally.”
“Since IBD is an invisible illness, it’s easy for us to mask our pain and suffering. As soon as you share your story and talk with those close to you, you open yourself up to support and better understanding.”
Julia is a former magazine editor turned health writer and “trainer in training.” Based in Amsterdam, she bikes every day and travels around the world in search of tough sweat sessions and the best vegetarian fare.
Nutrition and Crohn’s Disease
Nutrition and Crohn’s Disease
There is no special diet for people with Crohn’s disease. This means that research has not shown any particular foods to either help or worsen disease activity.
However, ensuring good nutrition is an important part of managing Crohn’s disease. People with Crohn’s disease are at risk for developing malnutrition and nutrient deficiencies. Poor nutrition makes it more difficult for your body to heal and fight infection. Malnutrition may also cause you to feel tired
There are several reasons why people with Crohn’s disease may be at risk for poor nutrition, including:
- Decreased food intake due to loss of appetite, pain, diarrhea, or other symptoms, or fear of these symptoms.
- Increased need for calories, protein, and some vitamins and minerals.
- Dehydration due to diarrhea.
- Decreased ability of your small intestine to absorb nutrition, if your small bowel is affected.
- Bowel surgeries, since removal of big portions of the bowel may lower your ability to absorb certain nutrients.
- Preexisting dietary restrictions that may or may not be necessary.
So, people with Crohn’s disease should follow a balanced diet and be sure to get enough calories, protein, vitamins, minerals, and fluid. No specific foods must be avoided, but some people may notice that certain foods cause discomfort. If this is true for you, avoid these foods. Nutrition needs vary from person to person, so it is best to meet with a Registered Dietitian who can help you individualize your diet.
Calories and Protein
- You must eat and/or drink enough calories every day to stay at a healthy weight. People generally need more calories when they are acutely ill, such as when you are experiencing a Crohn’s flare. Rapid weight loss is a sign of malnutrition.
- The inflammation caused by Crohn’s disease increases your body’s protein needs. Too little protein intake may harm your body’s ability to heal and also leads to muscle loss. High protein foods include meats, fish, eggs, milk, cheese, yogurt, tofu, soy milk or other products made from soybeans.
Vitamins and Minerals
- ·Vitamin B12 is important for normal body function. Vitamin B12 is absorbed in the ileum, a part of the small bowel often affected by Crohn’s disease. Vitamin B12 levels can be checked with a simple blood test. A supplement may be recommended if your level is low.
- ·Calcium and vitamin D are needed for healthy bones. Many adults do not take in enough of these nutrients, but people with Crohn’s disease are at higher risk if they avoid dairy products, since these are primary sources of calcium and vitamin D. If you avoid dairy, you may not need to – read the section below on Lactose Intolerance for more information.
- ·Other vitamins and minerals of special concern include:
- Folic acid, especially if you are on sulfasalazine or methotrexate.
- Magnesium and zinc, especially if you have persistent diarrhea.
- Iron, especially if blood loss from the intestine occurs.
- Your physician or dietitian may recommend additional vitamin and/or mineral supplements based on laboratory values or clinical condition.
Low Fiber/Low Residue: Is it necessary?
No! Dietary fiber is an important part of a balanced, healthy diet. Fiber provides energy for your colon and it also helps regulate cholesterol levels.
If you have Crohn’s disease, there is no need to limit your intake of dietary fiber. Nor do you need to eat more than the recommended amount for the general population. Recommended daily fiber intake is 21-24 grams for women and 30-38 grams for men. Trial and error is the best way to figure out the amount of fiber you are able to tolerate in your diet. Different people feel good with different amounts, and the amount that feels best for you may also change during a Crohn’s flare.
What about the special diet I read about?
Several different diet programs have made claims that following a special eating pattern may help reduce Crohn’s disease symptoms. Currently, no good quality research studies support any special diet for treating Crohn’s disease. Some diets may temporarily improve GI symptoms because they restrict hard to digest carbohydrates, but these diets do not change the inflammation of the bowel. Unlike celiac disease, in which the body is allergic to gluten, Crohn’s disease is not a food allergy, so eliminating foods will not heal you.
You are welcome to test different eating patterns, but be careful not to restrict your diet to the point that you lose weight unintentionally. Work with a Registered Dietitian if you are following any special diet to ensure you are maintaining a balanced diet.
- ·Lactose is a sugar found in milk and some other dairy products. Many healthy adults may have difficulty digesting lactose and dairy products (especially in large amounts) due to low levels of lactase, the enzyme needed to break down lactose. Patients with Crohn’s disease do not have a higher incidence of lactose intolerance than the rest of the population.
- ·Symptoms of lactose intolerance include cramping, bloating, gas, and/or diarrhea after consuming dairy products.
- ·Not all people with Crohn’s disease will experience lactose intolerance and routine avoidance of dairy products is not needed. Dairy products are a good source of calories, protein, vitamins, and minerals.
- ·If dairy products cause discomfort, they should be avoided or consumed in small amounts as tolerated. Discuss your calcium and vitamin D intake with your dietitian.
Strictures, partial obstruction, or narrowed areas of bowel
- ·If your doctor has informed you that you have intestinal strictures, a partial bowel obstruction, or that you have areas in the bowel which are narrowed, a low fiber diet may be recommended.
- ·On a low fiber diet, the following foods should be avoided: raw fruits and vegetables (especially those with pulp, edible skins or seeds), corn, beans, nuts, seeds, popcorn, raisins, whole grain products, bran products, and fiber supplements. It is also important to always chew foods well.
Crohn’s & Colitis Foundation of America: http://www.ccfa.org
UVA Medical Nutrition Support Team: www.GInutrition.virginia.edu