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About Crohn's Disease

How to Really Talk to Your Doctor About Crohn’s Disease

It may be uncomfortable to talk about Crohn’s, but your doctor needs to know about your symptoms, including the nitty-gritty about your bowel movements. When discussing the disease with your doctor, be ready to talk about the following:

  • how many bowel movements you typically have per day
  • if your stool is loose
  • if there is blood in your stool
  • the location, severity, and duration of your abdominal pain
  • how often you experience a flare-up of symptoms each month
  • if you’re experiencing any other symptoms not related to your gastrointestinal tract, including joint pain, skin issues, or eye problems
  • if you’re losing sleep or waking up frequently during the night because of urgent symptoms
  • if you have had any changes in appetite
  • if your weight has increased or decreased and by how much
  • how often you miss school or work because of your symptoms

Try to make it a habit to keep track of your symptoms and how they’re affecting your daily life. Also, mention to your doctor what you’ve been doing to help manage symptoms — including what worked and what didn’t.

Food and nutrition

Crohn’s can interfere with your body’s ability to absorb nutrients, which means you may be at risk of malnutrition. It’s imperative that you take the time to talk about food and nutrition with your doctor.

You probably already know there are some foods that affect your stomach and should be avoided. Your doctor can give you tips on what foods are highly nutritious and also safe for Crohn’s disease. At your appointment, ask about the following:

  • what foods and beverages to avoid and why
  • how to create a food diary
  • what foods are beneficial for those with Crohn’s disease
  • what to eat when your stomach is upset
  • if you should take any vitamins or supplements
  • if your doctor can recommend a registered dietitian

Treatments and side effects

There’s no one-size-fits-all approach to treating Crohn’s disease. You’ll want to go over all of the available treatments with your doctor and what they recommend given your unique symptoms and medical history.

Medications for Crohn’s disease include aminosalicylates, corticosteroids, immunomodulators, antibiotics, and biologic therapies. They aim to suppress the inflammatory response caused by your immune system and to prevent complications. Each work in different ways.

Here are some things to ask your doctor about Crohn’s disease treatments:

  • what treatments are recommended for the type and severity of symptoms you have
  • why your doctor chose a particular medication
  • how long it takes to feel relief
  • what improvements you should expect
  • how often you have to take each medication
  • what the side effects are
  • whether the medication will interact with other medications
  • what over-the-counter drugs can be used to help with symptoms, such as pain or diarrhea
  • when surgery is needed
  • what new treatments are in development
  • what will happen if you decide to decline treatment

Lifestyle changes

Apart from changing your diet, changes in your daily life can also help control your symptoms and prevent flare-ups. Ask your doctor if there is anything they recommend changing, such as:

  • how often you should exercise
  • what types of exercises are beneficial
  • how to reduce stress
  • if you smoke, how to quit

Possible complications

You may already be familiar with the most common symptoms of Crohn’s disease, but you need to look out for several complications as well. Ask your doctor about each of the following complications so you can better prepare for them if they should arise:

  • joint pain
  • eczema
  • malnutrition
  • intestinal ulcers
  • intestinal strictures
  • fistulas
  • fissures
  • abscesses
  • osteoporosis as a complication of chronic steroid therapy

Emergency symptoms

Crohn’s disease symptoms can be unpredictable at times. It’s important that you’re able to recognize when your symptoms mean something serious.

Have your doctor review what symptoms or side effects of your treatment would be considered an emergency that requires immediate medical attention.

Insurance

If you’re new to a doctor’s practice, check to see that they accept your insurance. Additionally, certain treatments for Crohn’s disease are expensive. So it’s important to make sure it’s all covered so as not to cause a delay in your treatment plan.

Ask about programs from pharmaceutical companies that help reduce your copays and out-of-pocket expenses for your medications.

Support groups and information

Consider asking your doctor or healthcare team for the contact information for a local support group. Support groups can be in person or online. They aren’t for everyone, but they can provide emotional support and a wealth of information about treatments, diet, and lifestyle changes.

Your doctor might also have some brochures or other printed material that you can take with you or some recommended websites. It’s important that you don’t leave your appointment feeling confused about anything.

Follow-up appointment

Last but not least, schedule your next appointment before you leave your doctor’s office. Request the following information before you go:

  • what symptoms your doctor wants you to pay attention to before your next appointment
  • what to expect for next time, including any diagnostic tests
  • if you need to do anything special to prepare for a test in your next visit
  • how to pick up any prescriptions and questions to ask the pharmacist
  • what to do in case of an emergency
  • what is the best way to contact your doctor, whether it be by email, phone, or text
  • if you had any diagnostics tests done, ask the office staff when the results will come in and whether they’ll call you directly to follow up

The bottom line

Your health is a priority, so you need to be comfortable working with your doctor to get the best care possible. If your doctor isn’t giving you the care, time, or information that you need, you might want to see a new doctor.

It’s perfectly normal to seek a second or third opinion — or more — until you find the right fit

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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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