You have Crohn’s disease. Maybe you’ve had it for a long time, or maybe you’ve just been diagnosed. You’ve heard and read a lot about it, but you don’t really know what to expect.
The first thing to do is to ask your doctor. He can help you understand your condition and provide answers to your questions. It’s a good idea to learn all you can about it.
What Happens to Your Body?
Crohn’s disease is a type of inflammatory bowel disease. That means that your body’s immune system attacks and damages your bowel or gastrointestinal system.
It’s a chronic, meaning long-term, condition that gets in the way of your body’s ability to take in important nutrients. It can also affect the way you digest food and get rid of waste.
Crohn’s can involve any part of your gut. But the ileum, the last part of your small intestine, is most commonly affected.
Because of inflammation, you might have some of these symptoms:
- Diarrhea or frequent, watery bowel movements
- Urgent bowel movements
- Trouble having bowel movements
- Bleeding from your rectum
- Pain or cramping in your abdomen, or belly
- Weight loss
Other parts of your body, like your joints, skin, or eyes, can be affected, too.
Symptoms can come and go. You may have periods of time when you feel fine. These times might be followed by flare-ups of the condition.
Remission also is possible. With Crohn’s, remission is sometimes thought to take place when symptoms go away and ulcers in the colon begin to heal.
What You Can Do
You should be able to do just about anything. But you may need to make some adjustments.
Each person is different. Your Crohn’s disease might:
- Affect a large part of your gastrointestinal system or only a small part
- Be mild, moderate, or severe
- Go long periods without symptoms or flare-ups
- Be fairly easy to control, or it may be very difficult
- Go into remission
Depending on the way Crohn’s affects you and your ability to manage it, you may have some challenges.
Your symptoms. Although most people with Crohn’s are able to have active lives, symptoms and flare-ups may cause you to miss work, school, or other activities – even if you stick to your treatment plan.
Your day-to-day activities. You may want to plan your activities with your Crohn’s in mind. For example, know where the closest bathroom is.
Your diet. Stay away from some foods if they make you feel worse. For instance, if milk products or greasy foods cause diarrhea, don’t eat them.
Your mood. Crohn’s disease, like other chronic conditions, may affect your mood. You may feel more stressed or depressed at times. You may have pain, which also affects your emotions. If your condition starts to get to you, look into seeing a counselor and joining a support group.
If you’re female, Crohn’s could affect your ability to get pregnant. If it isn’t well-controlled, it may cause problems once you are pregnant. Your doctor may recommend a C-section if you have certain complications.
Crohn’s causes two types of complications:
- Local, which involve the intestinal tract
- Systemic, which affect your entire body
Local complications of Crohn’s include:
- Abscess: This pocket of pus results from a bacterial infection. It can form on your intestinal wall and bulge out. Or you might get one near your anus that looks like a boil. You’d notice swelling, tenderness, pain, and fever.
- Bile salt diarrhea: Crohn’s disease most often affects the ileum, the lower end of your intestine. This part usually absorbs bile acids, which your body creates to help it absorb fat.
- Fissure: Painful tears in the lining of the anus. They can cause bleeding during bowel movements.
- Fistula: Sores or ulcers can turn into openings that connect two different parts of your intestine. They can also tunnel into nearby tissues (bladder, vagina, skin).
- Malabsorption and malnutrition: The disease affects your small intestine, the part of your body that absorbs nutrients from food. After you’ve had it for a long time, your body may no longer be able to make the most of what you do eat.
- Small intestinal bacterial overgrowth (SIBO): Your gut is full of bacteria that help you break down food. When this happens higher up in your digestive tract than normal, you can get gas, bloating, belly pain, and diarrhea.
- Strictures: These narrowed, thickened areas of your intestinal tract result from the inflammation that comes with Crohn’s. They can be mild or severe, depending on how much of your intestine is blocked. Symptoms include cramping, abdominal pain, and bloating.
Systemic complications are often called extraintestinal. Some of the most common ones include:
Arthritis: Joint inflammation — which leads to pain, swelling, and a lack of flexibility — is the most common complication. There are three types of arthritis that sometimes come with Crohn’s:
- Peripheral: This type affects large joints in your arms and legs, like your elbows, knees, wrists, and ankles.
- Axial: This type affects your spine or lower back (the doctor will call it your sacroiliac joint).
- Ankylosing spondylitis: This more serious type of spinal arthritis is rare among people with Crohn’s, but it can happen. Besides causing arthritis in your back, it can lead to inflammation in your eyes, lungs, and heart valves.
Bone loss: Medications like steroids can lead to bone loss, a condition known as osteoporosis. They can:
- Stop your body from absorbing calcium, which your body needs to build bone
- Make your body get rid of calcium when you pee
- Boost production of cells that break down bone
- Lower the number of cells that help form bones
- Lower your body’s output of estrogen. Estrogen also helps build bone.
The proteins that cause inflammation to change the pace at which old bone is removed and new is formed.
Vitamin D deficiency. If your body can’t absorb vitamin D because of Crohn’s damage to the small bowel or small bowel resection, you’re less likely to be able to absorb calcium and make bone.
Crohn’s may also affect your body’s ability to absorb other fat-soluble vitamins, iron, and copper.
Skin problems: These are the second most common systemic complication. Those most often linked to Crohn’s disease include:
- Erythema nodosum: These small, tender, red nodules usually show up on your shins, ankles, and sometimes your arms.
- Pyoderma gangrenosum: These pus-filled sores often follow an injury or other skin trauma. They often appear on your legs but can show up anywhere.
- Skin tags: These small flaps of skin are common in people with Crohn’s, especially around the anus or hemorrhoids.
- Mouth ulcers: You might hear them called canker sores. They form between your gum and lower lip or along the sides and bottom of your tongue.
Eye problems: Over time, the inflammation from Crohn’s, or sometimes the other complications that come with it, can affect your eyes. Common conditions include:
- Episcleritis: Inflammation of the area just below the conjunctiva (the clear tissue that covers the inside of your eyelids and the white of your eye) is the most common complication of Crohn’s. It can affect one eye or both. You’ll notice pain, itching, burning, and intense redness, but it won’t hurt your vision.
- Scleritis: This condition causes a constant pain that gets worse when you move your eyes.
- Uveitis: This is a painful inflammation of the uvea, the middle layer of your eye. It can cause blurry vision, light sensitivity, and redness.
Kidney problems: These organs can be affected by Crohn’s because they play a role in processing waste and are near your intestines. Potential issues include:
- Kidney stones: They’re a common problem with Crohn’s because your body has a hard time absorbing fat. It binds to calcium and leaves a salt called oxalate that gets absorbed into your kidneys and can turn into stones.
- Uric acid stones: These kidney stones form due to dehydration and a process called metabolic acidosis in which the balance of acids and bases in your blood gets thrown off.
- Hydronephrosis: This happens when the ileum (where your small intestine meets the large) swells from Crohn’s and puts pressure on your ureter, the tube that carries urine from your kidney to your bladder. When urine can’t drain the way it should, your kidney swells and scar tissue can form.
- Fistulas: In addition to forming within your intestines, fistulas can also develop between the intestine and other organs, like the bladder or ureter.
Liver problems: Your liver processes everything you eat and drink. It can get inflamed as a result of Crohn’s treatment or the disease itself. You’re only likely to notice low energy and fatigue unless you develop a more serious problem. Among the most common issues:
- Fatty liver disease: When your body doesn’t process fats as well, they can build up in your liver. Steroids can help.
- Gallstones: Your gallbladder stores bile, a liquid that helps your body dissolve fats. When Crohn’s affects the terminal ileum (where your small intestine meets the large intestine), it can’t process bile salts, which help cholesterol dissolve in bile. When that happens, the cholesterol can form into stones that block the opening between the liver and the bile duct, which sends bile down to your intestines.
- Hepatitis: Crohn’s disease can cause chronic (long-term) liver inflammation and primary sclerosing cholangitis.
- Pancreatitis: Inflammation of the pancreas can result from gallstones and from medications. It can cause pain, nausea, vomiting, and fever.
Physical development problems: Crohn’s can start at any age. When kids get Crohn’s, parents are likely to notice:
- Growth failure: Kids with Crohn’s are likely to be shorter and weigh less than those without. They may stop getting taller before symptoms start.
- Delayed puberty: Kids with Crohn’s are likely to start puberty later than their friends. Causes include malnutrition and lower fat mass, and interactions between proteins that cause inflammation and the endocrine system, which governs hormones.
What’s the Prognosis?
Most people with Crohn’s disease will have periods of disease activity followed by periods of remission.
Doctors say if these things apply to you at diagnosis, your Crohn’s may be more severe if you:
- Are younger than 40
- Have perianal or rectal disease
- Are taking steroids first thing
- Have a low education level
Some general facts:
- A small number of people will go into a long remission right after their first diagnosis.
- Many will get strictures or penetrating disease about 10 years after disease starts. Most will need surgery.
- Up to 80% of people with Crohn’s will be hospitalized at some point.
- Most people have symptoms that come and go, but a small number will either have continuous, active disease or prolonged remission.
- About half the people in remission who have surgery will have a recurrence at the 5-year mark.
- Some people have a more aggressive form of the disease that causes recurring obstructions or perforations. These people will need more surgery.
How Does Crohn’s Affect Life Expectancy?
There are a lot of things to consider, like the fact that Crohn’s affects everyone differently, and no two people have the exact same level of medical careBut doctors estimate that higher odds of death from Crohn’s range from zero to five times that of people who don’t have it.
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.
- 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.
- 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.
- 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.
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:
- 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.
- 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.
- 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.
- 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.
- 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.
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:
- Load up on anti-inflammatory foods. …
- Cut back or eliminate inflammatory foods. …
- Control blood sugar. …
- Make time to exercise. …
- Lose weight. …
- 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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