Notts girl, 12, died suddenly from Crohn’s disease after ‘several’ trips to GP

An investigation was launched after a 12-year-old girl collapsed at home and died unexpectedly of Crohn’s disease after ‘several’ trips to see her GP.

The unnamed girl made the visits to her family doctor with stomach pain but after a few weeks her condition worsened and she began vomiting ‘Coca-Cola-like’ dark liquid.

She died after she stopped breathing while at home.

A probe into the practice’s handling of her treatment ruled the unnamed girl would still have died of the chronic condition, which inflames the intestines and can cause internal bleeding, with earlier treatment.

But the practice, which has also not been identified, was told to make more routine checks on children who complain of stomach problems.

The case emerged in a report made public by the Nottinghamshire Safeguarding Children Board. It revealed 50 children in the county died over the last year.

The report also said a “learning and improvement bulletin” – which focuses on GP responses to weight loss and abdominal pain in children – was produced following the review of the death of the girl, referred to only as ‘Gabby’.

Gabby was healthy with no significant previous health issues other than asthma, the bulletin said.

It added: “Gabby presented several times over a seven-week period to her General Practitioners (GPs) with epigastric discomfort, some weight loss and occasional vomiting.

“Her mother had also been in touch with school nurses as she was concerned regarding her weight loss.

“The school nursing team had been involved in a support plan which included the plotting of Gabby’s weight with a referral to the dietician due to a noticeable drop in weight to the 0.4th centile.”

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Micrograph showing circular blobs of irritation in the intestine of a Crohn’s disease patient.

On the day of her death, Gabby was reportedly ‘fine’ at school and had completed a PE lesson with no complaints. She later played at home but complained of stomach ache in the evening.

She went to bed but vomited a couple of hours later. Her mother described it as “very black, like Coca-Cola”.

She went on to vomit three to four times in the night, and at about 6.20am, she needed help to the toilet, and then went back to bed.

She was later heard gasping and found to be pale and struggling to breathe. She later stopped breathing.

Paramedics were called and during resuscitation, Gabby continued to vomit black liquid. She died shortly after.

A post-mortem into her death revealed she died of intestinal perforation with peritonitis and sepsis and Crohn’s disease. The report added a coroner decided not to hold an inquest into the death.

The report added when she went to her GPs, her urine and weight were not checked. This was identified at an initial child death rapid response case discussion and was the subject of an internal “GP serious incident investigation”.

The investigation found no intervention would have prevented the death, but some “learning points” were identified – such as ensuring a urinalysis is performed for a child with abdominal pain.

The GP practice has introduced changes to their procedures for when a child arrives with abdominal pain, like stool sampling, but this would not have identified results that could have prevented the child’s death as Gabby “lacked clinical signs which would suggest she had Crohn’s disease”.

According to the report, the “learning points” have already been implemented at the practice where the girl was registered.

Living with Crohn’s disease

Jeff teaches English and drama at a middle school in San Diego, where he lives with his wife and one-year-old daughter. Twelve years ago, he was diagnosed with Crohn’s disease, a condition that causes chronic inflammation in the gastrointestinal tract. The most commonly affected areas are the colon and small intestine. There is no cure for Crohn’s, and without effective treatment, it can be extremely painful.

For Jeff, the pain caused by Crohn’s disease was the first sign that something was wrong. He was just entering his fourth year of college at San Diego State University when he began to experience severe abdominal pain. Although his school attendance wasn’t interrupted, he found himself needing to use the restroom three to four times per class. “It progressed to the point where having a bowel movement was excruciating,” Jeff recalls. Shortly after the pain started, blood and mucous began to appear in his stool. “They’re the kind of symptoms that, initially, you don’t want to tell anyone about,” Jeff says. However, his girlfriend — now his wife — told him that it was time to see a doctor.

Jeff’s primary care doctor referred him to a gastroenterologist, a physician who specializes in diseases of the gastrointestinal (GI) system. “I didn’t want to go see a GI doctor because I was 20 or 21 years old — and that’s usually a 40-year-old thing,” Jeff says. He did see the specialist, though, who performed a sigmoidoscopy and colonoscopy, procedures that use scopes to provide close-up images of the colon and intestinal lining. These procedures allowed the gastroenterologist to see inflammation in a section of Jeff’s small intestine called the terminal ileum. Although a diagnosis of Crohn’s disease can be daunting, Jeff says, “I was more concerned when I wasn’t diagnosed because it was just so excruciating and felt impossible to live with. But once I was diagnosed and given a treatment, it was a huge relief.”

Jeff was quickly started on prednisone, a steroid medication in pill form. The prescription helped significantly but had drastic side effects, such as facial swelling and bone density loss. Jeff transitioned off of prednisone and began Remicade, a medication administered every eight weeks by intravenous (IV) infusions. Although it stabilized Jeff’s condition for three years, the Remicade eventually stopped working. In 2007, Jeff switched to Humira. He now gives himself at-home injections of the medication every two weeks. He also takes anti-inflammatory pills twice a day, and a large fiber supplement to help his digestion. He’s been free from flare-ups of Crohn’s for eight years now.

In addition to medication, Jeff credits dietary changes with reducing his symptoms. Early on, he adjusted his lifestyle to eliminate caffeine, which notably triggered his symptoms, along with alcohol, spicy foods, and large amounts of dairy. He also avoids eating processed foods. “I actually had a trip to the ER early on,” he says, “because I ate a hot dog.” But, Jeff points out, “each person’s Crohn’s disease is different, so just because something is a trigger for mine doesn’t make it a trigger for everyone else’s.” Although he is careful with his diet, Jeff isn’t bothered by the foods he has to sacrifice to control his symptoms. “It sounds like a lot of stuff,” he says, “but it just ends up becoming second nature and I get used to eating the way I need to eat.”

Throughout the challenges presented by his Crohn’s disease, Jeff has remained both positive and proactive. “Challenges need to be seen as challenges, not as threats,” he says. “And if you approach it that way, it becomes much more manageable and realistic to deal with.” If he meets people with Crohn’s disease, Jeff says, “the only thing I ever want to do is help them realize that there are courses of treatment, and you can live a fairly normal life while dealing with it.” At the end of the day, “it’s what you decide to do with your situation, how you decide to handle it.”

15 Things to Remember if You Love a Person with Crohn’s Disease

1. They can’t participate in a lot of sports and other social activities as young people

Imagine you are a 16-year old girl who would love to go out with her friends for the evening. Maybe they want to drive around, stop at a few other friends’ homes, and stop at a fast-food place for burgers and fries. For theteen with Crohn’s, this means not eating all day in order to avoid embarrassing diarrhoea accidents, and certainly not participating in the fast-food stop. Suppose you are a teen boy wearing an excretion bag – how do you shower with your classmates after PE class? Parents and other adults need to be happy to make comforting accommodations for these teens, and that includes the PE teacher-jock who may not have a tendency for a lot of empathy. Wise parents have meetings with school personnel and make certain that all reasonable accommodations have been made, including a quick exit from class without permission.

2. They know it’s better not to consume alcohol

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So, when everyone is having a grand time at happy hour and putting pressure for the Crohn’s sufferer to have a beer, they wonder why they won’t drink. Are they anti-social; are they a recovering alcoholic? A sufferer with a pretty solid self-image may be able to explain the disease a bit. Good friends and partners understand and make an extra effort to make the sufferer feel comfortable, even in an environment of drinking.

3. They get depressed easily, because the disease seems to control so much of their daily lives

As Bethany Townsend, famous model and make-up artist claims, she left her career for years because of her “bag” and only recently was able to put on a bikini and post it on Facebook with the support and encouragement of her husband. Because of the overwhelming support she then received from Facebook fans she is back modeling and over her depression. Most Crohn’s sufferers do not give up public and promising careers, but they do have periods of depression. Making an effort to really understand how the simple things you take for granted can be big hurdles for your loved one will go a long way.

4. They may skip meals in order to avoid having to go to the bathroom

Weight is a rather sensitive topic for people with Chrohn’s. Oftentimes it’s easier for them to say they’ve been sticking to some brand new diet plan for weight loss than admitting they don’t want to have lunch with you because they might afterwards get stuck in the bathroom for hours. Skipping meals is one big concern for medical professionals dealing with Crohn’s patients because the potential for severe weight loss and even anemia are always present. A current study involving 3700 patients from over 40 countries is underway to research the efficacy of some new medications that will reduce the levels of the culprit antibodies and thus onset of acute and severe diarrhea is currently underway and does show some promise.

5. They can suffer embarrassingly severe diarrhea, especially in public places

They have to look for the nearest restroom when they are out, and this can be irritating to social acquaintances and partners who just don’t have the empathy they should. Being seated in a restaurant for the Crohn’s sufferer is a “huge” consideration, and others need to be supportive and kind about it, even if it means a bit longer wait for a table.

6. Being overly tired is a symptom of the disease, not an “avoidance” tactic as some have decided to believe

Normal daily activities of school and work can be exhausting, and this is a real physical symptom. Friends, family members and partners need to cease complaining or showing irritation when the individual needs a nap or simply does not have the energy to engage in physically-demanding activities after a long day. Plan those activities on weekends when there are no other physical and mental demands on the sufferer.

7. They may not be able to have the social lives that others do

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Teens avoid sleepovers, swim parties, and overnight trips with friends; adults may avoid such things as camping trips or picnics and barbecues, or adventurous trips to far away lands where restrooms might not be immediately available.

8. They may carry extra toilet paper, wear “Depends,” and always have an extra set of clothing with them (for serious cases)

Again, that’s something they are really embarrassed to admit. Understanding these behaviors is critical for friends and partners who truly want to make life as comfortable as possible for a Crohn’s sufferer. Instead of showing irritation because a road trip may involve more than the average number of restroom stops along the way, the empathetic fellow traveler will take it all in stride, be cheerful and accommodating. Should an accident occur, it is important to know whether the “victim” wants help or wants to deal with the problem on his/her own.

9. They are self-conscious about the clothing they wear so that bags don’t show

If you love this person, make extra efforts to compliment their dress and appearance.

10. They can’t always sleep well

There is discomfort a lot of the time, and this is not an exaggeration. Think of times when you have a bad bout of stomach gas with cramps and diarrhea. People with Crohn’s have to deal with this most of the time, even in the middle of the night. Stop complaining about being awakened, and give them a reassuring hug instead. Here are more tips about getting a better sleep if you have Crohn’s.

11. They may prefer not to go out to eat

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This can be a “bummer” when friends who are couples invite you to go out to dinner. If your loved one’s symptoms are acute, this is not going to be an option. If they are not acute, and the outing is planned, be certain that the restaurant chosen has mild foods that your loved can tolerate more easily. Several studies currently being conducted by the Crohn’s and Colitis Foundation are attempting to develop means by which normal microbe activity can be stimulated in the gastrointestinal tract that may ultimately allow those with the disease eat more normally. This would be a huge breakthrough!

12. They plan when they will eat certain foods, because they know how they will be affected and will need to be physically in a “safe” place

Don’t try to “force” your loved one to eat anything or anywhere if they are not truly comfortable with the food and/or the environment. You certainly don’t have to change your eating habits because of their disease, but neither should they ever have to change theirs to please yours. Certainly there a lot of great foods both for you and your loved one to digest normally.

13. Airline bookings may seem like a minor deal to you, but to the Crohn’s sufferer, maybe not

Be mindful that seating has to be close to the bathroom, and, if there is an accident because the bathroom is occupied at a moment of crisis, be reassuring and comforting. They are embarrassed enough without your expression of embarrassment too.

14. They understand that there is no cure and that researchers are looking at multiple causes

Those include but not limited to genetics, previous infections, immune system failures, and environmental factors such as junk food and too many antibiotics earlier in life. Understand that they are keeping apprised of any research that is ongoing and any new promising treatments, and that they will certainly take it up with their doctor. Instead of resenting, the time spent on reading up on these potential treatments and the conversation that they may want to have about them, be a good listener, be encouraging and be positive.

15. They have fears that they may seem abnormal to you

Just walking the dog can cause anxiety, if the walk will be pretty long; they fear that they may embarrass themselves or you. Imagine the anxiety of going to your boss’s home for dinner or a barbecue; imagine the anxiety of going to a child’s soccer or basketball game, sitting up in the stands and not being able to get down through the crowd to reach a restroom in time. You have to validate these fears and be willing to compromise. You can’t truly understand the fears because you don’t have the disease, but you must be willing to validate them with both words and behaviors.

10 Foods to Eat During a Crohn’s Flare-Up

Foods that may help ease Crohn’s symptoms

The foods that you put into your body can have an impact on the severity of your Crohn’s symptoms. People with Crohn’s identify various foods as triggers, and some foods that help ease symptoms.

However, both triggers and “power foods” are highly variable. What works for one person might not work for someone else, or might even make symptoms worse.

In this slideshow, we look at some foods that people with Crohn’s have reported benefits from. By eating one or more of these foods during a flare-up, you may be able to reduce symptoms and lead a more pain-free life.

Yogurt

Live-culture yogurt can be a great food to eat if you have Crohn’s disease. The probiotics in this form of yogurt can help in aiding with recovery of the intestine.

You may want to avoid yogurt if you find you have trouble digesting dairy proteins, as this can make Crohn’s-associated diarrhea and gas symptoms worse.

Oily fish

Oily fish such as salmon, tuna, and herring may help with some of your Crohn’s symptoms. Certain types of oily fish contain omega-3 fatty acids, which have anti-inflammatory properties and may help reduce the aggravation that causes the worst of your symptoms.

Fruits and vegetables

A diet containing plenty of fruits and vegetables can help you have fewer symptoms. If you find that raw fruits make your flare-ups worse, give applesauce and bananas a try. Both are good for you and can fulfill a craving for sweets.

Cooked carrots

For many people with Crohn’s, carrots can be a great vegetable for getting your fill of nutrients without aggravating symptoms.

During a Crohn’s flare-up, be sure to cook the carrots until they’re soft and tender, as cooked carrots aren’t only easy to digest, but they also contain antioxidants that may help with Crohn’s symptoms.

Cheese

Cheese can be a great way to put calcium back into your diet without drinking milk. However, it’s important to know that for some people with Crohn’s dairy products can be hard to digest.

Certain cheeses have reduced amounts of lactose, including Swiss and cheddar. Greasy foods containing cheese, however, are best avoided in order to reduce the likelihood of diarrhea and gas symptoms.

Cereals

If you have Crohn’s, you may find it helpful to avoid cereals that are high in fiber, especially whole wheat or whole grain cereals.

However, there are certain cereals with low amounts of fiber that will help you get your nutritional requirements. These include refined cereals, such as Cream of Wheat, and dry cereals such as Special K, Corn Flakes, and Rice Krispies.

Liquid meals

High-calorie liquid nutritional formulas, such as those produced by Ensure, can be great for use during a Crohn’s flare-up.

These shakes, which come in a variety of tasty flavors, are packed with the nutrients you may be missing by having to avoid certain foods that aggravate symptoms.

Liquid nutritional formulas can help boost your energy level and strengthen your immune system, which will help restore your body’s natural balance. If you’re trying to gain weight, these drinks can also help you regain any weight you may have lost.

It should be noted that Ensure contains dairy, which may not agree with some Crohn’s patients.

Low-fiber foods and more

If you’re looking for a way to decrease your Crohn’s symptoms through diet, look for low-fiber and soluble-fiber foods, which tend to be easier on the digestive system. You may also want to take vitamin supplements during this time in order to ensure that you’re getting the nutrition you need to fight inflammation.

You should consult with your healthcare provider about decisions regarding your diet or taking vitamins and supplements. You may be referred to a dietitian to help with planning out your meals.

Potatoes

You may want to skip the high-fiber potato skins, as they are likely to increase inflammation, but the insides of potatoes can be great to eat during a Crohn’s flare-up.

Like bananas, potatoes provide a great source of potassium, and can help your body maintain its balance of fluids while you’re battling a flare-up.