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About Crohn's Disease

Crohn’s Vocabulary: The A to Z of Understanding Crohn’s Disease

About Crohns Disease

You’ll hear a number of new words when you begin to learn about Crohn’s disease. This glossary can help you get up to speed.

Especially if you’ve been recently diagnosed, as you learn more about Crohn’s disease, you’ll see and hear all sorts of words that are unfamiliar to you — possibly at your doctor’s office, or while doing research online. This new vocabulary may seem overwhelming at times, but it’s important to get a sense of some basic terms used to discuss Crohn’s. These terms are the building blocks that will help you and your loved ones gain a better understanding of this chronic, lifelong disease.

In addition to learning common Crohn’s disease terms, people with Crohn’s to develop a positive relationship with their gastroenterologist. “Having an open line of communication and a trusting relationship will enable shared decision-making for the complex and difficult decisions that may come down the road with Crohn’s.

If you don’t understand a word or term your doctor uses when talking about Crohn’s, don’t just nod and pretend you understand — stop him or her and ask about it.

Lukin also emphasizes the importance of talking to your doctor about the potential complications of the disease and the therapeutic options available to you. “Medications likely to reverse a lot of complications, or keep them from happening in the first place.

To help boost your Crohn’s disease vocabulary, here are some useful terms to learn.

  • Abscess A collection of pus that can occur because of an infection in your abdomen or pelvis, or in your anal region, according to the Crohn’s & Colitis Foundation. Antibiotics can treat an abscess, but it may also need to be surgically drained.
  • Anal fissure A tear in the lining of your anus. Depending on whether the tear is shallow or deep, it may cause mild to severe rectal pain and bleeding, which may get worse during bowel movements. Topical creams and sitz baths can help, according to the Mayo Clinic.
  • Anus The opening of your rectum, through which stool passes out of your body.
  • Biologics These new treatments for Crohn’s and other forms of inflammatory bowel disease (IBD) are antibodies that stop certain proteins in the body from causing inflammation, according to the Crohn’s & Colitis Foundation. “Biologics recognize a specific chemical or protein within the body that is abnormal within Crohn’s, and will aim to neutralize that molecule or that protein.
  • Clinical trial A research study that typically tests whether a new drug or device is safe and effective for people to use, or looks at different ways to use current treatments, according to the U.S. Food and Drug Administration. Certain people may have access to these experimental drugs as part of their Crohn’s treatment.
  • Colon Is Also known as the large intestine, this long, hollow tube at the end of the digestive tract creates and stores stool.
  • Enteral nutrition Nutrition has given by a feeding tube, according to the Mayo Clinic. Enteral nutrition may be recommended for a limited period of bowel rest is needed to reduce inflammation, especially if medications aren’t doing the trick or in preparation for surgery. 
  • Extra-intestinal manifestations (EIMs) Crohn’s signs and symptoms that occur outside of your GI tract, in other parts of your body, according to the Crohn’s & Colitis Foundation. Up to 47 percent of people with an inflammatory bowel disease like Crohn’s experience EIMs, notes a study published in August 2015 in the journal Inflammatory Bowel Diseases.  
  • Fistula An abnormal connection that goes from your intestine to another place in the body, according to the Mayo Clinic. “In Crohn’s, there are several types of fistulas that can form,” says Lukin. “They can go from bowel to bowel, bowel to the bladder, bowel to the skin, rectum to the vagina, or from the anus or rectum out into the area around the perineum (the space between your anus and vulva or scrotum).”
  • Gastrointestinal (GI) tract The entire length of your digestive system, from your mouth to your anus.
  • Ileocolitis The most common form of Crohn’s, in which the disease affects the end of your small intestine along with your colon (large intestine), according to the Crohn’s & Colitis Foundation.
  • Ileum The final segment of your small intestine, which empties into the large intestine.
  • Immune system The body’s defense system for fighting off foreign intruders, such as bacteria and viruses. When you have IBD, your immune system doesn’t respond properly to the environmental triggers, causing inflammation of the GI tract, according to the Centers for Disease Control and Prevention.
  • Immunomodulators A group of medications for Crohn’s disease that are aimed at suppressing the body’s immune system response so it cannot cause any further inflammation, according to the Crohn’s & Colitis Foundation. “[The medications] do this by preventing white blood cells, or chemical mediators of inflammation, from functioning properly,” says Lukin. But he cautions that in addition to halting an abnormal immune response, these drugs can also make you more susceptible to infection or cancer. Inflammation High immune system activity in an area when your body senses a threat. In people with Crohn’s, inflammation can cause symptoms and, over time, damage to your GI tract. “The more inflammation that is present, the more active the disease,” says Lukin. “Inflammation is the active part of the disease that is the originator of all the symptoms of Crohn’s.” 
  • Inflammatory bowel disease (IBD) A group of disorders in which there’s a chronic inflammation of your GI tract, according to the Crohn’s & Colitis Foundation. Crohn’s disease and ulcerative colitis are the two main forms of IBD.
  • Intestine The intestine or bowel is a winding tube that extends from the stomach to the anus. It includes the small intestine and the colon (large intestine), and its main purpose is to digest food.
  • Intestinal microbiome The genetic material of all the microbes — such as bacteria and fungi — living in your intestine. “The microbiome of a person with Crohn’s disease is very different from that of someone without the disease,” says Lukin. The makeup of the intestinal (gut) microbiome in people with IBD tends to fluctuate more than in other people, according to a study published in February 2017 in the journal Nature Microbiology.  
  • Mucosal inflammation Inflammation of the lining of your intestine, which can be treated with mucosal healing, an advanced treatment intended to prevent disease progression, according to the Mayo Clinic. Many people with Crohn’s who are in clinical remission, without any symptoms, still have active mucosal inflammation, says Lukin. “The goal of treatment is to heal the lining to the point where there is no visible sign” of active disease when your intestine is viewed through a scope, he explains. 
  • Ostomy Surgically changing the flow of waste (stool or urine) to the outside of your body. In people with Crohn’s, an ostomy may take the form of either an ileostomy (from your small intestine to your abdominal wall) or a colostomy (from your colon to your abdominal wall).
  • Parenteral nutrition is given intravenously (by IV), according to the Mayo Clinic. It provides the nutrients your body needs while bypassing your gastrointestinal (GI) tract, and may be used during severe disease flares, if you’re extremely malnourished, or if you have short bowel syndrome — a disorder that can occur if you’ve had significant portions of your small intestine surgically removed.
  • Rectum The lower part of the large intestine, in which stool is stored.
  • Resection A surgical procedure that removes a diseased segment of your intestine, then reattaches the healthy ends, according to the Crohn’s & Colitis Foundation.
  • Small intestine The longest part of the digestive system, which connects your stomach to your large intestine, and where most absorption of nutrients from your diet takes place.
  • Stoma The opening on the outside of your body that’s created in ostomy surgery.
  • Stricture A narrowing of your intestine that can develop because of chronic inflammation in Crohn’s, according to the Crohn’s & Colitis Foundation. “If you look at it like plumbing,” says Lukin, “it’s almost like a clogged pipe where the intestine becomes blocked or narrowed to a point where nothing can pass through.
  • Ulcers Open sores that can develop anywhere in your GI tract because of chronic inflammation in Crohn’s, according to the Mayo Clinic.

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About Crohn's Disease

Still Tired liveing with crohns

When my Crohn’s disease is active, my fatigue can be debilitating. Sometimes I’m forced to stop answering phone calls because I literally don’t have the energy to construct sentences. I don’t allow myself to drive because it doesn’t feel safe. I’m basically unable to do anything except the bare minimum, and when I come out on the other side I feel like I’ve been in the deepest fog.

How can I be so tired?

After experiencing fatigue like this on and off for quite a while, I began to wonder how I could possibly be SO tired. I was ‘sleeping’ ten to twelve hours a night and taking a nap during the day. What more could my body possibly want? I wasn’t working. I wasn’t moving much. In fact, I wasn’t using any more strength than necessary, and yet, it still felt like too much.

Anyone with IBD knows that when you’re sick, it often feels like more than just stool emptying from your bowels. It feels like life is emptying out too.

Fatigue and mental health

I found the fatigue contributed to my anxiety and depression, affecting my mental health too. It seemed like I was trapped in this awful cycle and all I could do is come up for air between episodes.

During that time, I took prescription sleep medication, I worked with a sleep doctor, and underwent multiple normal sleep studies. I even followed suggestions on reducing screen time, creating sleep hygiene and more, but no matter what, I felt exhausted all of the time.

Sleep versus rest

This was when I learned the difference between being asleep, and getting rest. Being in bed, tossing and turning, waking up during the night – they all impact our ability to achieve deep sleep cycles characterized by faster breathing, a faster pulse, and rapid eye movements, or REM. There were times that my body may have been unconscious, but it most certainly wasn’t at rest.

It became clear to me that I had to learn how to dedicate time to conscious rest when I was awake. To be honest, this felt awkward and like something I was embarrassed about. Have you ever sat down to do something like this?

Changes I made

There were three changes I made that over time have significantly impacted my levels of fatigue, and I’d really like to offer them as suggestions to anyone who is struggling.

  1. Scrolling through social media, even while laying in bed, doesn’t count as resting. When you brain is actively thinking about things you want, need, or are missing out on, it impacts your body’s ability to rest. Schedule in some breaks to put your phone down.
  2. Guided imagery and meditation are real things that relax your mind AND your body. I rely on the Calm app, but there are others out there as well which offer you these services right from your phone. Quieting your brain quiets your body in a real, lasting way.
  3. Aromatherapy – certain scents are tied to physical relaxation. Whether you purchase a linen spray, light a candle, burn incense or diffuse essential oils, or take a bath with bubbles or salts or bombs, aromatherapy draws upon the healing powers of the leaves, flowers, stems, bark, roots or petals of plants to stimulate the natural healing action of both your body and your mind.
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About Crohn's Disease

Tips on Asking for Support During Crohn’s or UC Flares

If you’re living with inflammatory bowel disease, you know that your life, health, abilities, and capabilities can change dramatically in a short period of time. From my experience, no matter how much I plan for the next flare, there are always things I wish I had done, I need but don’t have, or I would really benefit from help.

Asking for help during a Crohn’s or UC flare

I’ve thought a lot about this and about how it feels hard to ask for help. I don’t usually know what to ask for directly so I often keep quiet, and I never know who exactly I should reach out to in the event that I need (or want!) physical things or tangible assistance.

I wanted to share with you some thoughts I’ve put together after a lot of trial and error. To be honest, it’s SO MUCH better for my mental health and my stress levels as my symptoms increase to know that I know how to best ask for support and that I’m not alone in my trials, especially when this disease can feel so isolating.

Things that are helpful when dealing with a flare

In no particular order, here are some things that have worked for me:

  1. Keep a list in your phone of a few people who are local that you trust, and that might be able to do you a favor when you don’t feel well. Depending on your needs, this might mean stopping at the store, dropping off a cooked meal, picking up a prescription, taking you to a doctors appointment, sitting with you in the ER or visiting you at home or in the hospital.
  2. Then, add to the bottom of that list, a few people who might not necessarily be nearby, but who understand your heart. People you can call or facetime or text when you want to cry or vent or be distracted. One important note here: don’t leave out your other friends with IBD! I’ve often avoided telling them that I was doing poorly because I knew they had struggles of their own, and in retrospect, they wished they’d been able to be there for me. They understood my plight directly and agreed they’d tell me if whatever I was telling them or asking them in terms of support felt like too much at any given time.
  3. Think about your necessities during a flare: what foods or meal replacements you can tolerate, what clothes and basic household items that you both need and that would make you more comfortable, and anything that might cheer you up.
  4. If you have a roommate, live with family, have a spouse, children or pets, think about if they can help and/or have needs of their own while you are down and out.
  5. In the event that a friend or family member reaches out and asks what they can do for you, or what they can bring you or send to you, I’ve found politely declining over and over is a loss for both myself and the other person. They genuinely want to help, and I honestly could use it. I have found it to be easiest to have direct and tangible items I can ask for – such as groceries, prepared meals (or meal delivery), conversation to take my mind off of things or company when I don’t have the energy to talk.

Living with inflammatory bowel disease is hard enough, there’s absolutely no reason to decline help or support simply because you don’t know how to ask, or don’t want to inconvenience someone who has already offered.

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About Crohn's Disease

Inflammatory Bowel Disease

What is Inflammatory Bowel Disease (IBD)
Inflammatory Bowel Disease is a group of chronic lifelong conditions affecting the digestive tract. It includes both Ulcerative Colitis (UC) and Crohn’s Disease (CD) which are similar but affect different parts of the intestine. UC affects the inner lining of the large intestine while CD can affect any part of the digestive tract from the mouth to the anus. You can read further information on IBD in this patient information leaflet

Clinical features of Inflammatory Bowel Disease
The main features of IBD are bloody diarrhoea associated with frequency, urgency and abdominal cramps.  In severe attacks patients may suffer weight loss and anorexia.

In addition patients may have symptoms from outside the digestive tract including:

•         Arthritis (large joints)
•         ankylosing spondylitis
•         erythema nodosum
•         pyoderma gangrenosum
•         iritis and episcleritis (inflammation of the eyeball)
•         primary sclerosing cholangitis (75% pts have IBD, Geonzon –Gonzales 2006)

How common is IBD?

•         15,000 people in Ireland have IBD
•         Incidence in Ireland – 6,000 UC
                                        – 3,000 CD

What causes IBD?
The cause of IBD is unknown but is thought to include:   Genetic susceptibility
A familial tendency 
Environmental factors -smokingstress

non-steroidal anti-inflammatory drugs  

history of appendectomy

history of infection with mycobacteria  

activation of the immune system

possibly diet but not proven

•         Infective agents
•         Seasonal changes
•         Stress – implicated in aetiology of disease  (Mawdsley & Rampton 2005)

Treatment of IBD
Treatment for IBD is often simple and includes both local and oral medications, often the condition can be managed in the community by the patient’s General Practitioner after consultation with a Specialist. Regular review by a specialist is recommended for complex therapies and disease. Surgery may be required in difficult cases.

Mary Kennedy is the IBD Clinical Nurse Specialist at TUH. The IBD nurse is often your first point of contact if you require any advice regarding your disease. She provides a rapid point of access for IBD patients, in particular she can provide support, advice and information on your inflammatory bowel condition. Also, she will play an active role in disease and drug education and management. Treatments such as Infliximab (Remicade) and Adalimumab (Humira) are administered by the IBD Nurse.

An advice line is run by the IBD Nurse and the contact number is 01 414 3855.

TUH Gut Therapy Programme for IBS
The chronic diarrhoea pathway aims to provide patients with diarrhoea symptoms of Irritable Bowel Syndrome (IBS) with fast access to the most appropriate investigations and management of their condition. Patients aged over 45 with chronic diarrhoea of more than one month duration will be automatically be triaged for a colonoscopy. If this and blood tests are normal they subsequently attend the dietitian led gut therapy clinic.

Patients aged under 45 with chronic diarrhoea of more than one month duration with red flag symptoms such as bleeding, weight loss, anaemia and family history of bowel cancer or IBD will also be automatically be triaged for a colonoscopy. If this and blood tests are normal they subsequently attend the dietitian led gut therapy clinic. 

Patients under 45 who do not have red flag features will have blood and stool tests done. If these are normal they attend the dietitian led gut therapy clinic, if an abnormality is detected they have a colonoscopy and are managed as appropriate after that.

Its most notable attribute is its effect on wound management and healing. Manuka honey also has antibacterial, antiviral and anti-inflammatory properties that may help treat numerous ailments, including irritable bowel syndrome, gastric ulcers, periodontal disease and upper respiratory infections.

Honey is well known for its anti-inflammatory and antioxidant capacities, which may be useful for the prevention of chronic inflammatory process like atherosclerosis, diabetes mellitus and cardiovascular diseases. The antibacterial, anti- inflammatory and antioxidant properties of honey

What is the fastest way to get rid of inflammation in the body?Follow these six tips for reducing inflammation in your body:

  1. Load up on anti-inflammatory foods. …
  2. Cut back or eliminate inflammatory foods. …
  3. Control blood sugar. …
  4. Make time to exercise. …
  5. Lose weight. …
  6. Manage stress.

Does b12 reduce inflammation?Vitamin B6, folate (B9), and B12 can lower your levels of homocysteine, an amino acid that’s linked to a greater risk for heart disease and rheumatoid arthritis. But we can’t say for sure that lowering homocysteine will also lower your risk for disease. The same is true for C-reactive protein, a sign of inflammation.

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