Crohn’s Disease: ‘My stomach pains were like a scene from Alien’

The Nottingham Post posted an article today about Crohn’s Disease. In this article they interviewed a  man named Matthew Littlewood, who is 39 years old. Here is the article:

Crohn’s disease: ‘My stomach pains were like a scene from Alien’

By Nottingham Post  |  Posted: July 08, 2014

Matthew Littlewood pictured alongside his family, at their home in Southwell. From left: Matthew Littlewood, 39, Finn Littlewood, 2, Rachel Malone, 40, and Erin Hayball, 12. Matthew Littlewood pictured alongside his family, at their home in Southwell. From left: Matthew Littlewood, 39, Finn Littlewood, 2, Rachel Malone, 40, and Erin Hayball, 12.

FOR nearly 20 years Matthew Littlewood has been trapped in a “living nightmare”.  Every day, the 39-year-old dad from Southwell deals with crippling abdominal pain, chronic fatigue and malnutrition brought on by Crohn’s disease.  Such is the severity of his illness that Mr Littlewood had to undergo an eight-hour operation to remove his colon and have a colostomy bag fitted.

“My dreams for the future have been destroyed,” the former QMC nurse says. “All I ever wanted was to be a nurse, and I was a nurse, but now I am not and never will be again – it is pretty hard to come to terms with that.

“My partner’s dreams have been destroyed, too. She works when she can but we can’t have holidays and our social life is almost non-existent.

“Going out for dinner is like planning a military operation.”

Mr Littlewood, who lives in Norwood Gardens with fiancée Rachel Malone, 40, son Finn Littlewood, 2, and stepdaughter Erin Hayball, 13, was officially diagnosed with Crohn’s disease in 2011.

However, he has been suffering with the symptoms of the illness, which include passing blood and stomach pains “which feel like that scene out of Alien” since he was 20 years old.

He said: “I had a three-month period of strong abdominal pains and bleeding when I was around 20.

“I didn’t go to the doctor because I just brushed it off as irritable bowel syndrome. And, to be honest, it is difficult to talk about things that are so embarrassing.

“Then when I was 24, I got a rectal abscess, which was so painful. I had it for a month before going to the doctor, who thought it could be a hernia and referred me to a specialist.”

Mr Littlewood went on to suffer chronic constipation, which left his colon completely blocked, and fistulas.

The fistulas would break the surface of the skin on Mr Littlewood’s buttocks where they would leak puss, blood and waste.

Surgeons put a stitch into the fistulas to create a perpetual drain, which eased the symptoms for a time.

However, on January 1, 2010, Mr Littlewood fell more ill than he had ever been. He recalled: “I had never felt so ill. I had crippling abdominal pain. I was going to the toilet 20 or 30 times a day, passing blood and nothing else, and the fistulas were growing.”

In a bid to ease Mr Littlewood’s pain, surgeons cut out a large section of his buttocks leaving him “terribly scarred”. However, the decision was finally taken to remove his colon and fit a colostomy bag instead.

He said: “I feel the best that I ever have but I know that it won’t last; it hangs over you.

“I want more people to be aware of the condition because it is an invisible illness.

“On the outside I look fine but I am constantly exhausted.

“It’s like having flu but without the sniffles and sneezes, along with a constant feeling of heartburn – all day, everyday.

“It is almost impossible to sleep; it is like being a living zombie.”

More than 260,000 people in the UK are thought to be living with inflammatory bowel disease – the umbrella which Crohn’s comes under – and a further 10,000 cases are diagnosed each year.

Medical research and patient support charity Crohn’s and Colitis UK – with support from the Big Lottery – embarked on a four-year research project into the causes and symptoms of chronic fatigue for the estimated 260,000 people living with inflammatory bowel disease.

People with Crohn’s and colitis will now be able to measure the severity and impact of their fatigue objectively using the newly-researched and validated inflammatory bowel disease Fatigue Scale, which is available on http://www.fatigueinIBD.co.uk

Helen Terry, director of patient support and information at Crohn’s and Colitis UK, said: “Some doctors and nurses are unaware of how much fatigue can affect people with inflammatory bowel disease and many do not ask about it during an appointment.

“We are asking everyone with inflammatory bowel disease to make sure that they have told their healthcare professionals about this under- recognised symptom.

“We hope that the Fatigue Scale will greatly improve the quality of discussions between patients and their doctors.”

Dr Nina Lewis, a consultant gastroenterologist at Nottingham City Hospital said: “Crohn’s disease and ulcerative colitis are a common cause of ill health, affecting approximately 0.5% people in the UK and cost the NHS an estimated £720 million each year.

Despite lots of research, the cause Crohn’s disease remains largely unknown, although major advances have been made in the last few years.

“If you develop diarrhoea, abdominal pain and or weight loss lasting for several weeks or longer, it is important to see your doctor to make sure there is nothing wrong.”

THE Only Way Is Essex star Sam Faiers was diagnosed with inflammatory bowel disease following her Celebrity Big Brother stint in January.

She is now helping patient support charity Crohn’s and Colitis UK to improve awareness of the condition.

“The exhaustion I experienced was horrible, life- limiting and a typically untreated symptom for people with Crohn’s or colitis,” she said.

“This new Fatigue Scale is a breakthrough and will make talking to my doctors much, much easier.

“This really is great news for everyone with inflammatory bowel disease or similar conditions.”

Read more: http://www.nottinghampost.com/stomach-pains-like-scene-Alien/story-21341763-detail/story.html#ixzz36sUcFqeA

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What is Crohn’s Disease?

Named after Dr. Burrill B. Crohn, who first described the disease in 1932 along with colleagues Dr. Leon Ginzburg and Dr. Gordon D. Oppenheimer, Crohn’s disease belongs to a group of conditions known as Inflammatory Bowel Diseases (IBD). Crohn’s disease is a chronic inflammatory condition of the gastrointestinal tract.

When reading about inflammatory bowel diseases, it is important to know that Crohn’s disease is not the same thing as ulcerative colitis, another type of IBD. The symptoms of these two illnesses are quite similar, but the areas affected in the gastrointestinal tract (GI tract) are different.

Crohn’s most commonly affects the end of the small bowel (the ileum) and the beginning of the colon, but it may affect any part of the gastrointestinal (GI) tract, from the mouth to the anus. Ulcerative colitis is limited to the colon, also called the large intestine.

Download an illustration of the GI Tract (.pdf)

Crohn’s disease can also affect the entire thickness of the bowel wall, while ulcerative colitis only involves the innermost lining of the colon. Finally, in Crohn’s disease, the inflammation of the intestine can “skip”– leaving normal areas in between patches of diseased intestine. In ulcerative colitis this does not occur.

Recognizing the Signs and Symptoms

Crohn’s disease can affect any part of the GI tract. While symptoms vary from patient to patient and some may be more common than others, the tell-tale symptoms of Crohn’s disease include:

Symptoms related to inflammation of the GI tract:

  • Persistent Diarrhea
  • Rectal bleeding
  • Urgent need to move bowels
  • Abdominal cramps and pain
  • Sensation of incomplete evacuation
  • Constipation (can lead to bowel obstruction)

General symptoms that may also be associated with IBD:

  • Fever
  • Loss of appetite
  • Weight Loss
  • Fatigue
  • Night sweats
  • Loss of normal menstrual cycle

Even if you think you are showing signs of Crohn’s Disease symptoms, only proper testing performed by your doctor can render a diagnosis.

People suffering from Crohn’s often experience loss of appetite and may lose weight as a result. A feeling of low energy and fatigue is also common. Among younger children, Crohn’s may delay growth and development.

Crohn’s is a chronic disease, so this means patients will likely experience periods when the disease flares up and causes symptoms, followed by periods of remission when patients may not notices symptoms at all.

In more severe cases, Crohn’s can lead to tears (fissures) in the lining of the anus, which may cause pain and bleeding, especially during bowel movements. Inflammation may also cause a fistula to develop. A fistula is a tunnel that leads from one loop of intestine to another, or that connects the intestine to the bladder, vagina, or skin. This is a serious condition that requires immediate medical attention.

The symptoms you or your loved one experience may depend on which part of the GI tract is affected. Read more about the Types of Crohn’s Disease and Associated Symptoms.

What are the Causes of Crohn’s Disease? Who is Affected?

Crohn’s disease may affect as many as 700,000 Americans. Men and Women are equally likely to be affected, and while the disease can occur at any age, Crohn’s is more prevalent among adolescents and young adults between the ages of 15 and 35.

The causes of Crohn’s Disease are not well understood. Diet and stress may aggravate Crohn’s Disease, but they do not cause the disease on their own. Recent research suggests hereditary, genetics, and/or environmental factors contribute to the development of Crohn’s Disease.

The GI tract normally contains harmless bacteria, many of which aid in digestion. The immune system usually attacks and kills foreign invaders, such as bacteria, viruses, fungi, and other microorganisms. Under normal circumstances, the harmless bacteria in the intestines are protected from such an attack. In people with IBD, these bacteria are mistaken for harmful invaders and the immune system mounts a response. Cells travel out of the blood to the intestines and produce inflammation (a normal immune system response). However, the inflammation does not subside, leading to chronic inflammation, ulceration, thickening of the intestinal wall, and eventually causing patient symptoms.

Crohn’s tends to run in families, so if you or a close relative have the disease, your family members have a significantly increased chance of developing Crohn’s. Studies have shown that 5% to 20% of affected individuals have a first – degree relative (parents, child, or sibling) with one of the diseases. The risk is greater with Crohn’s disease than ulcerative colitis. The risk is also substantially higher when both parents have IBD. The disease is most common among people of eastern European backgrounds, including Jews of European descent. In recent years, an increasing number of cases have been reported among African American populations.

The environment in which you live also appears to play a role. Crohn’s is more common in developed countries rather than undeveloped countries, in urban rather than rural areas, and in northern rather than southern climates.

Rachael’s VIRTUAL Pure Romance PARTY WITH A PURPOSE

To Join: https://www.facebook.com/events/659034504175936

Calling all divas and naughty hotties…and smart boyfriends and husbands! 😉

We’re having a virtual Pure Romance party while SUPPORTING AN EXCELLENT CAUSE! It’s a new twist for summertime fun! Shop from your seat — not on your feet!

Here’s the info:

The party begins Friday, June 6th and will be open until Sunday, June 15th. It’s going to be very interactive and I’ll be posting flash sales, videos, trivia, scavenger hunts, funnies, articles, product highlights, and more, so stay tuned and check back often! By participating and placing an order, you’ll have tons of opportunities to win prizes and save big on your Pure Romance purchase, BUT YOU MUST RSVP as ATTENDING to this Facebook event AND place an order to win.

10% of the party’s total product sales will be donated back to Rachael’s fundraising efforts for the CCFA – Crohn’s & Colitis Foundation of America and Team Challenge for Crohn’s & Colitis (CCFA).

****FOR RACHAEL TO GET CREDIT, YOUR ORDER MUST BE PLACED BY PHONE, TEXT, EMAIL, OR FACEBOOK MESSAGE!!!!!*****

Window-shop online at www.PureRomanceByBryann.com or view a digital catalog here: http://bit.ly/1rMpjWO, then CONTACT Bryann Robinson DIRECTLY!!!

Call/text: 509.720.VIBE (8423)
Email: PureRomanceByBryann@gmail.com

Also, be sure to go “LIKE” the Pure Romance by Bryann Facebook fan page to keep up with all the latest news, sales, specials, and sexy shenanigans! 😀

Ask me about my summertime Quickie Parties (within the greater Spokane, WA/Coeur d’Alene, ID area) or Virtual Parties! These are perfect for hectic social calendars!

That’s all, ladies! Don’t forget to INVITE YOUR 18+ FRIENDS TO THIS EVENT!!! When your friends join this event and SHOP FOR A CAUSE, YOU will earn extra entries into our drawings and giveaways throughout the party!

Let the fun begin!

Things I Wish Someone Would Have Told Me About Running From The Very Beginning

  • No matter how long you’ve been running, you always hate the first 2 miles.
  • If you start running to lose weight, you might not lose that much, but eventually you don’t care about weight because running has so many, REPEAT, SO MANY unplanned for benefits
  • That I’d be SO happy every day
  • That I’d feel a sense of immediate solidarity with other runners
  • That for real, I’d LOVE and RESPECT my body for what it can do
  • That it would change my life, take me places out there and in my heart
  • That I’d become a morning runner and just LOVE it
  • That no matter how much sunscreen I use I’d have a tan line from my shots all year long.
  • Just when it’s about to fade, summer would be back.
  • That pepper spray would be my BEST friend That I’d have to redo my wardrobe to accommodate for the new gear
  • That I’d live and eat in running clothes
  • That I would jump around like a new puppy (in my head) every time I learned someone was a runner and not even bothering holding back the excitement
  • That you face and work on your body issues every time you hit the pavement
  • That once you make running a part of you life, life is lived in color…..nothing is drab
  • That following a training plan religiously is a recipe for injury
  • That listening to your body is THE only way to avoid injury
  • That learning the weather for the next morning is more important than news
  • That you begin to notice all the people, who for whatever reason, can’t run.
  • That my muscular, toned legs would surpass my bum, as my most sexy asset (my opinion…I’m allowed.)
  • That I’d chew through ‘favorite’ songs super FAST and as a result know all the latest “cool” songs….I’m a teacher and my young students are always impressed by my playlist..little do they know I am looking for new songs weekly
  • That you’d start thinking ways to make extra money to pay for that race.
  • That most non-runners care nothing about our obsession, so, don’t be weird…..find a runner to talk to about running
  • That suddenly magazine subscriptions are IN again
  • That a half or a marathon becomes a less daunting challenge pretty fast in this journey
  • That you’d get THAT excited seeing other cars with running stickers
  • That you can’t help posting on FB about your runs, oh, and that you start not to care who “un-friends” you as a result

– See more at: http://www.womensrunningcommunity.com/training/beginners/things-i-wish-someone-would-have-told-me-about-running-from-the-very-beginning/#sthash.srraSw3h.dpuf

$13 on the 13th for 13.1

For the next 12 days, I’m focused on fundraising and awareness-raising for Team Challenge for Crohn’s and Colitis. I’m currently at 50% of the way to my goal of raising $7000 for the Crohn’s and Colitis Foundation of America (CCFA), the leading organization that funds research for better treatments and cures for Crohn’s and colitis. I’m asking for $13 donations in honor of the 13.1 miles I will run with my teammates (decked out in my Team Challenge gear and ready to talk about IBD) on July 20, 2014, in Napa, CA. That’s a pledge of $1 per mile. If you’d like to make a donation, here’s the link: http://online.ccfa.org/rachelbabcock

IBD week day 1

But why donate? What’s so special about this cause?

For me, it’s special because it’s personal. My best friend, Aunt and I ALL have Crohn’s disease. PLUS, since joining Team Challenge I’ve made over a dozen friends with these diseases and numerous friends who care for IBD patients.

This cause is special because it’s probably personal for you, too. Nearly one and a half million people in the US have Crohn’s or colitis, you probably have a friend or family member with one of theses diseases, whether you know it or not. A lot of people really hate talking about this disease (I mean, who can blame them, since so much of it has to do with how much time we spend in the bathroom) and hide the disease even from their closest friends.

Here are 13 things that people you know with Crohn’s or colitis might be dealing with RIGHT NOW:

1: Dietary restrictions. Restrictions for IBD patients could be just about anything from no leafy greens to gluten free to liquids only to IV nutrition. Symptoms and sensitivities present differently in each patient and there is no single diet that will work for every IBD patient, or even any single patient for their entire life.

2: Fatigue. When you have IBD it can be tough to get out of bed in the morning or make it through the whole day without feeling completely exhausted. There are many potential culprits of fatigue including vitamin deficiency, anemia, blood loss, and medication side effects.

3: Fever. With chronic inflammation can come chronic fevers. (These were a major symptom for me leading up to diagnosis, I would go through my normal activities regularly with 101 degree fevers.)

4: Pain.  Abdominal pain is common to all IBD patient’s, but many patients also suffer from joint pain and muscle aches too – it’s not all in the digestive tract.

5: Diarrhea. Many patients are in and out of the bathroom constantly, especially during a flare.

6: Constipation. Some patient’s suffer more from slow digestion than diarrhea, everyone is different.

7: Nausea. Another very common complaint of IBD patients.

8: Fear. This is a big one. Many patients have a lot of fears including (but not limited to) being far away from a bathroom, medical procedures like colonoscopies and surgeries, or not knowing when the next flare will come.

9: Medications and their side effects. This deserves a whole series of blog posts, but suffice it to say that IBD medications are heavy duty and many of them come with a long list of side effects that can be as difficult to deal with as the disease itself.

10: Inability to participate in favorite activities. Chronic fatigue, chronic diarrhea/constipation/nausea, chronic pain, etc., all lead to many days and nights spent missing out on favorite activities like picnics, exercise, parties, hikes, dates, trips to the beach, or whatever people love to do.

11: Vitamin deficiency. When you have IBD, large sections of the digestive tract are often inflamed and studded with ulcers, which makes it difficult for the body to absorb essential nutrients.

12: Bloody stool. This is often one of the first, frightening symptoms patient’s notice before diagnosis and also one of the symptoms that scares people so much they don’t seek treatment right away.

13: Weight loss. If you’ve got abdominal pain, chronic diarrhea, constant nausea, and absorption issues, it’s really easy to lose weight quickly.

Thanks for reading, and if you can, I hope you’ll donate $13 today, via my CCFA fundraiser here: http://online.ccfa.org/rachelbabcock

Speaking Up About an Uncomfortable Condition by Jane E. Brody

This article was posted in the NY times this week. Very interesting (http://nyti.ms/1jlHAA1)

Bowels, especially those that don’t function properly, are not a popular topic of conversation. Most of the 1.4 million Americans with inflammatory bowel disease — Crohn’s disease or ulcerative colitis — suffer in silence.

But scientists are making exciting progress in understanding the causes of these conditions and in developing more effective therapies. And affected individuals have begun to speak up to let others know that they are not alone.

Abby Searfoss, 21, who just graduated from the University of Connecticut, shared her story not in a support group, but online. She was a high school senior in Ridgefield, Conn., when she became ill. After she researched her symptoms on the Internet, she realized that, like her father, she had developed Crohn’s disease.

Her father had been very ill, losing 40 pounds, spending weeks in the hospital and undergoing surgery. Soon after Ms. Searfoss’s own diagnosis, her two younger sisters learned that they, too, had the condition.

In Crohn’s disease, the immune system attacks cells in the digestive tract, most often the end of the small intestine and first part of the colon, or large intestine. Sufferers may experience bouts ofabdominal pain, cramps and diarrhea, often accompanied by poor appetite, fatigue and anxiety.

“You don’t go anywhere without checking where the bathroom is and how many stalls it has,” said Dr. R. Balfour Sartor, a gastroenterologist at the University of North Carolina School of Medicine and a patient himself. “The fear of incontinence is huge.”

Neither Crohn’s disease nor its less common relative ulcerative colitis, which affects only the large intestine, is curable (except, in the latter instance, by removing the entire colon). But research into what predisposes people to develop these conditions has resulted in more effective treatments and has suggested new ways to prevent the diseases in people who are genetically susceptible.

Two concurrent avenues of high-powered research are supported by the Crohn’s and Colitis Foundation of America. One is the C.C.F.A. Genetics Initiative, in which scientists are exploring more than 100 genetic factors now known to influence the risk of developing an inflammatory bowel disease, or I.B.D.

The other research effort, the C.C.F.A. Microbiome Initiative, has so far identified 14 different bacterial metabolic factors associated with the diseases.

By combining findings from the two initiatives, experts now know that certain genes affect the types of bacteria living in the gut; in turn, these bacteria influence the risk of getting an inflammatory bowel disease.

Genes identified thus far appear to account for about 30 percent of the risk of developing an I.B.D., according to Dr. Sartor, who is the chief medical adviser of the foundation. Studies of twins underscore the role of genetics. When one identical twin has Crohn’s disease, the other has a 50 percent chance of also developing it.

In the general population, the risk among siblings of a Crohn’s patient is only 5 percent.

Many people carry genes linked to either Crohn’s or ulcerative colitis, but only some of them become ill. Environmental factors that interact with susceptibility genes also play critical roles.

Strong clues to these factors are emerging from a distressing fact: The incidence of I.B.D. is rising significantly both here and in other parts of the world, Dr. Ramnik J. Xavier, chief of gastroenterology at Massachusetts General Hospital in Boston, said in an interview.

“There’s been a huge uptick in China and India as these countries move more toward a Western lifestyle and adopt Western work and dietary patterns,” Dr. Xavier said. “I.B.D. cases are now skyrocketing in well-to-do areas of China.”

And when people migrate from a low-incidence area to a higher one like the United States, the risk of developing an I.B.D. rises greatly among their children. ‘This clearly shows there’s an environmental impact that we think is multifactorial,” Dr. Sartor said in an interview.

“Diet is one obvious factor that affects both the composition of the gut biota and also its function,” he said, referring to the microorganisms that inhabit the gut. “Bacteria eat what we eat, and every bacterium has certain food preferences.”

Diet influences the types and balance of microbes in the gut, and different microbes produce substances that are either protective or harmful. For example, Dr. Sartor said, “Certain bacteria that can metabolize the fiber in certain vegetables and grains produce short-chain fatty acids that are believed to protect the gut. They inhibit inflammation and activate immune responses that stimulate recovery from cell injury.”

Another major contributor to the rise in Crohn’s disease in particular is the widespread, often inappropriate use of antibiotics, Dr. Sartor said.

“Early exposure to antibiotics, especially during the first 15 months of life, increases the risk of developing Crohn’s disease, though not ulcerative colitis,” he said. “If there’s a family history of I.B.D., particularly Crohn’s disease, antibiotics should be used only for a documented bacterial infection like strep throat or bacterialmeningitis.

“And when antibiotics are needed, probiotics can be used during and afterward to minimize their effect and restore the normal bacterial population of the gut.”

Dr. Sartor also noted that early exposure to common viruses and bacteria can strengthen the immune system and keep it from attacking normal tissues.

“My advice to parents and grandparents is, ‘Let them eat dirt,’ ” he said.

Dr. Sartor has lived with Crohn’s disease for 43 years and for the most part has managed to keep flare-ups at bay with a proper diet, medications and daily probiotics.

He also suggests that those with a family history of I.B.D. avoid taking nonsteroidal anti-inflammatory drugs like aspirin, ibuprofen and naproxen, which block the action of protective substances in the gut and can cause ulcers in the lower intestine and the stomach. Acetaminophen is safer, he said.

Many patients say undue stress can cause flare-ups of an I.B.D. And a new study of 3,150 adults with Crohn’s, presented at a recent scientific meeting by Lawrence S. Gaines, a psychologist at Vanderbilt University, suggests that depression — feeling sad, helpless, hopeless and worthless — increases the risk of active disease a year later.