When I received my initial diagnosis of irritable bowel syndrome (IBS) almost 10 years ago, I naively thought that all my digestive issues would be a thing of the past. Now that the doctors knew what these unrelenting symptoms were, surely they could fix me.
Fourteen-year-old me was wrong. It was only the beginning of a very long and emotional journey. Conditions like IBS affect eating habits, daily life, and social agendas.
I’ve come to terms with the fact that suffering in silence with a digestive condition is counterproductive. While I previously tried to hide it from everyone but my mother, I now talk about my health on the internet, baring all for the world to see.
And it’s strangely therapeutic.
But when you share your story, you’re also privy to some weird and wonderful comments in return. As it turns out, everyone else has an opinion on it too.
Let’s talk about the 12 things that everyone with IBS is tired of hearing.
Because they’re definitely more of an expert than the various gastroenterologists I’ve seen, right? Whether or not they think this pearl of wisdom is helpful, it’s tricky to know if I should roll my eyes or accept that they’re trying to be sympathetic.
There’s always that one person who feels the need to add their card to the pile when I acknowledge or talk about my IBS. Their stomach pain is so much more painful than mine apparently. And if I try to top that, watch out! Oh, how I wish it were only a temporary bad stomach.
When I air out my digestive issues, it’s natural to expect a few responses. However, there’s usually someone who indulges a little too much. And 90 minutes later, I’d probably be able to pass a quiz on their entire GI history.
I know they’re trying to empathize, but IBS isn’t something a person just “gets once.” For starters, people only get diagnosed because they’ve had symptoms for months, or longer. If only IBS reared its ugly head just the once and then disappeared altogether. My problems would be solved.
The wonderful thing about invisible conditions like IBS is that I probably do look fine on the outside. And I suppose it’s a compliment that I look like my normal self when there’s so much inner turmoil going on. But if someone had a broken leg, people generally wouldn’t tell them to suck it up and walk on it. Just because IBS can’t be seen it doesn’t mean it’s not there.
Usually delivered in tandem with a heavy sigh and a roll of the eyes. I understand it’s frustrating that I have dietary requirements, but it doesn’t help to make me feel awkward about them too. It’s already bad enough I’ve had to give up chocolate, cheese, milk, dairy, butter. But look, I’m still here, walking and talking — so I must be able to eat SOMETHING.
Yes, good food and exercise can help ease symptoms. But in some cases, they can also exacerbate them. So it’s a little unsympathetic to assume everyone is the same and that the solution is so simple. When someone tells me this, I understand they’re only trying to help. But it’s slightly frustrating to assume I’m not already trying.
Surely everyone’s aware that even Her Majesty the Queen goes for a number two? Although it’s not the most pleasant thing in the world to go through, I’d appreciate a bit more of a dignified response. But this sort of comment makes a person feel embarrassed for opening up.
That’s what I tell myself too when I’m sitting on the toilet for the seventh time that morning. I don’t believe in this malarkey, either! If only IBS were a myth — it would solve all my problems.
We’ve all heard the phrase “mind over matter,” and to some extent it’s true. With IBS, worrying about symptoms flaring up invariably means that symptoms do flare up because of the anxiety. I can’t win! But saying it’s all in my head? That’s insensitive and downright inconsiderate.
I thought I was finally at the tail end of my symptoms, and then, oops, there I go again. It’s back to the IBS grind. What I’d like people who don’t have IBS to understand: I’m tired of being controlled by my digestive system, but I can’t help it. I’ll probably never be 100 percent better, but I’m doing my best. It’s frustrating, but I can work around it.
Say I have 10 cats, and someone allergic to cats comes over to visit. Would getting rid of nine of the cats mean that person doesn’t have an allergic reaction? (No.) If I could eat that creamy, melted-in-the-middle, warm chocolate pudding, I would. But I can’t.
Admittedly, it’s difficult to know the right thing to say to someone who suffers from IBS, because from an outsider’s perspective it can be frustrating to not know how to help. I remember my mother being in tears because she felt powerless to help me. It can be tricky to know what will be the most helpful thing to say.
But please rest assured, sometimes I and others like me just need a sympathetic ear (and a toilet close by). Your support means more than you know.
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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