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.
Menstrual Cycle and IBD Flares
“I didn’t have a cycle for three months during my recent flare.”A MyCrohnsAndColitisTeam member
“My symptoms seem to get worse, and menstruation lasts longer and seems very irregular.” A MyCrohnsAndColitisTeam member
Crohn’s disease and ulcerative colitis can have an impact on women’s menstrual cycles. Some women stop menstruating or experience irregular periods due to the impact of flares on their hormonal function. Getting flares under control can help women return to a regular menstrual cycle.
Women who continue to menstruate may experience worse PMS and menstruation symptoms during flares, as well as more severe Crohn’s and colitis symptoms. Women on MyCrohnsandColitisTeam reported heavier periods, pain, nausea, heightened mood swings, and increased frequency and urgency of bowel movements during disease flares.
Managing menstrual pain can be extra challenging when some over-the-counter medications like Ibuprofen (sold as Advil and Motrin) are off-limits. Members on MyCrohnsandColitisTeam have opted for methods like birth control or prescribed pain relievers, as well as alternative remedies like heating pads, tea, and hot baths to reduce discomfort during their periods.
On MyCrohnsandColitisTeam, the social network and online support group for those living with Crohn’s and colitis, members talk about a range of personal experiences and struggles. Periods and flares are one of the most discussed topics.
Here are some question-and-answer threads about periods and flares:
- What do you take for menstrual cramps when Advil is off limits?
- Ladies…. increased symptoms during menstrual cycle ??
- For the ladies – menstruation and IBD
- Menstrual periods and Crohn’s
Here are some conversations about periods and flares:
- “Do you feel a flare coming on around your menstrual cycle?”
- “Are you ever in the middle of a really bad flare and can’t tell if it’s your colon or uterus causing the pain?”
- “Does the disease affect your menstrual cycle?”
- “Before my diagnosis and bowel resection, my menstrual cycles were normal. Now my cycle is delayed and irregular.”
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