Chronic Illness & Anxiety: A Chicken & Egg Scenario

Anxiety and depression are prevalent for those who suffer from chronic illness. In fact, one study found that 40% of Inflammatory Bowel Disease (IBD) patients had abnormal anxiety levels and this drastically increases to 80% when the patient is in a flare-up . With chronic illness typically, there is a feeling of loss of control over your own life which can in turn cause stress, anxiety and depression.

Chicken or Egg?

I was diagnosed with IBD 9 years ago and while I have learned to (mostly) manage the symptoms of my disease over time, I have yet to master the feelings of worry and anxiety. After having a bowel resection surgery, I have been in clinical remission but not without its bumps along the way. The fear of the unknown can do a number on one’s mental health. The possibility of a flare-up always lives in the back of my mind. I can remember the countless visits to the hospital, procedures, medications, and extreme pain. I was barely able to take care of myself, and now that I have children, I worry that if I were to have a flare-up, I wouldn’t be able to take care of them or participate in their lives in a meaningful way.

I know that having a chronic illness has increased my anxiety levels, but does stress and anxiety exasperate my symptoms? Research shows that stress can worsen symptoms and cause a relapse of remission. From WebMD “When someone is under stress, the body gears up for a fight-or-flight response by secreting certain hormones, including adrenalin, as well as molecules called cytokines. They stimulate the immune system, which triggers inflammation. In people whose ulcerative colitis is in remission, this sets the stage for the return of their symptoms, known as a flare-up.” This is something I’ve experienced and heard from talking to fellow chronic illness sufferers. Lack of quality sleep and environmental stressors have often caused a revival of symptoms which can be a slippery slope to a full-on flare.

Anxiety definition (from Merriam-Webster):
an abnormal and overwhelming sense of apprehension and fear often marked by physical signs (such as tension, sweating, and increased pulse rate), by doubt concerning the reality and nature of the threat, and by self-doubt about one’s capacity to cope with it.

Stress definition (from Merriam-Webster):
constraining force or influence: such a physical, chemical, or emotional factor that causes bodily or mental tension and may be a factor in disease causation
Anxiety = Fear

When speaking about Generalized Anxiety Disorder it is often associated with people who have irrational fears or worry for no reason. When talking about sufferers from chronic illness, often the anxiety is derived from perceived AND real fears. From my experience, my anxiety stems from a fear of a past trauma reoccurring. Fear of pain, a flare-up, of being out with no access to bathrooms. Fear of foods and eating, procedures, fear of damage caused by long term use of medications (i.e. Remicade can cause an increase in cancer). Fear of missing work, fear that people don’t understand, fear of drug/procedure costs and benefits coverage. This can be scary stuff and can plague your thoughts even when in remission.

From diagnosis to remission the fear still exists, it just changes in size and scope. A newly diagnosed patient can go through stages of grieving and without having the tools to manage the illness it can be very scary. Fast forward to remission, chronic illness has many layers and can be unpredictable. No matter how much you’ve done to manage your illness, there is still a possibility you can have a relapse. The feeling of helplessness can trigger depression, but on the flip-side depression can slow recovery. This begets a vicious cycle which can be hard to get under control.

Coping Physically and Mentally

Patients must cope with not just the disease itself but the mental health side effects of it. While I believe I’ve received excellent care from my Gastroenterologist, he deals with only clinical IBD symptoms so often the mental health aspect of the disease gets overlooked. It is important to bring up your emotional health to your doctor when suffering from a chronic illness despite the perceived stigma. Having that aspect under control could potentially help with physical symptoms. Anxiety and chronic illness can be a chicken and egg scenario where consideration must be given to both to have a holistic treatment plan.

Strategies for Coping With Anxiety:

Find your support: whether that be a close friend, family member, a fellow patient, or support group like Lyfebulb, knowing you aren’t in this alone makes a world of difference.

Don’t assume the worst: challenge those negative thoughts! Remember that you have survived thus far, and all those experiences make you stronger.

Try yoga, meditation, or deep-breathing:  Research has shown this to be an effective complementary therapy for patients with IBD.

Seek counseling – an impartial third party can help instill coping techniques

SOURCES: [Sharma P, Poojary G, Dwivedi SN, Deepak KK. Effect of Yoga-Based Intervention in Patients with Inflammatory Bowel Disease. Int J Yoga Therap. 2015;25(1):101-12. doi: 10.17761/1531-2054-25.1.101. ]
Cannabis is an increasingly popular therapy for IBD with cannabidiol (CBD) showing promise as an anti-inflammatory and tetrahydrocannabinol (THC) as a pain reducer and sleep-aid. [Ahmed W, Katz S. Therapeutic Use of Cannabis in Inflammatory Bowel Disease. Gastroenterol Hepatol (N Y). 2016;12(11):668-679.]

– Krystal Laferriere, Lyfebulb Ambassador (Instagram @xtra_ordinary_girl )

4 Best Ways to Look After an Unwell Loved One

If you’re looking after an unwell loved one, then you’ll be thinking the same thoughts as many others in your position, including – “How can I help them to feel better?” “When will they be better?”, and “Will they ever recover?” Answers to these questions will differ from case to case. However, it’s important to remember that you’re not alone in this. It’s important to know that there are people around you who want to support you, and further, it’s important that your loved one is in the best possible environment as long as you’re taking care of them, showing them love and patience, and dutifully attending to their needs.

Meet Up Retired Wellbeing Pensioner Workout Concept

Great Medical Care

Unless you’re a medical doctor yourself, medical professionals can provide you with a greater understanding of what your loved one needs while they’re ill. As soon as any loved one is struck down by serious illness, then you should seek immediate medical treatment and advice. If your loved one is unwell due to a fall at work or a car accident that wasn’t their fault, then they might be eligible to receive compensation to cover the medical costs of subsequent treatment and surgeries. For any inquiries you might have, consider using www.the-compensation-experts.co.uk to guide you through the process of making a claim.

Help Them Stay in Contact With Friends

If your loved one is unwell and is confined to their home, then take steps to try and integrate them into the community by organizing days out, for friends to come and stay, and take measures to help them safely meet others online – especially those going through the same experience as they are. Shared stories and continued support can help the recovery process, especially is they’ve been diagnosed with a potentially fatal illness, or have suffered an irreparable injury.

Be Present

Show them that you care by being with them at their most vulnerable time, and offering to do things for them. Ensure that they have the provisions they need and take them to any medical appointments they might have. Be on hand to offer help, prepare the food and drinks they enjoy, and keep them feeling comfortable and happy with the environment they’re in. If your loved one is confused or in need or clarification, for example, if they’ve suffered extensive damage to their body, then you should be the one to soothe them, reassure them, and comfort them during an uncertain time. Your loved one will desire familiarity and comfort, so be present and tell them how much you love them.

Ask Them What They Need

In order to look after your loved one to the very best of your ability, you should listen to them and ask them what they want. Providing they’re lucid and coherent; you should ask them what they require instead of making the decisions for them. By asking your loved one what they need directly, you can save embarrassment, frustration, and miscommunication in the long run. Your loved one will want to feel understood, and know that you’re listening to them.

Painting To Heal My Body From Crohn’s

“Art is a wound turned into light” – Georges Braque

I was 21 when I was diagnosed with Crohn’s disease.  I was at the age where I was just beginning my adult life.  My life journey suddenly took me into a direction I wasn’t prepared for.  I was an outgoing social person who suddenly had everything taken away.  I had no control over my sickness.

For three years I battled with Crohn’s at its worst.  I lost an extreme amount of weight from not being able to eat.  Everything that was put in my mouth gave me agonizing stomach pain which then turned into extreme diarrhea.  I was a prisoner in my own home. Having to go to the bathroom 20 plus times a day became my normal.  But I could cope with the diarrhea, I could cope with the chronic tiredness, I could cope with the pain, I could cope with the joint pain that plagued my body, I could cope with the endless medication and the side effects it gave, but what I couldn’t cope with was the loneliness, the lack of control I felt I had over my life, and most of all, I couldn’t cope with not being the person I wanted to be.

After years of symptoms and trying medication to settle the Crohn’s, I formed an abscess on my large intestine which grew to the size of a football.  I was taken in for emergency surgery.  I was told when I wake up I will have a colostomy bag as there was probably too much damage to my bowel. I didn’t care.  I just wanted everything to be fixed.  I just wanted my life back.  When I woke up I remember the nurse saying ‘you didn’t need a bag’  I felt this was the first positive thing that had happened to me in years.  I slowly recovered from the surgery.  My body was so sick (before having the surgery), and the abscess had been slowly leaking poison into my body, so my recovery was very slow.

For the next few years, I suffered from bowel obstructions due to the scarring in my bowel.  I was placed in the hospital for a week, given IV medication and fluids, had a nasogastric tube inserted. The the pain and symptoms would pass.  My body started to heal.  My symptoms of Crohn’s started to stop.  I stopped all the medication, I stopped worrying about leaving the house in case I had chronic diarrhea,  I had no pain, I had my life back!

For 14 years I lived as if I didn’t have Crohn’s.  I knew the monster was being dormant in my body, but I lived like it wasn’t there. I met the love of my life and started a family.  I became a mother to 5 children and started working full time.  My life was extremely busy and I used that excuse not to look after myself.  My diet consisted of coffee all day and the take out food at night.  I would read and research different diets that people had success with to manage their Crohn’s.  I knew all the right things to do and eat, but my attitude always was ‘I’ll start tomorrow,’ but that tomorrow never came.  I knew I was a ticking time bomb, and if I didn’t change my lifestyle soon I would pay the price.  But I always had an excuse.  I started to destress my life by painting. I had always been creative and a free spirit.  I started to create art and found it was a way to emerge into emerge into a world where I could express who I was and who I wanted to be.

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Art became who I was and I finally found something I was passionate about and made me feel free.  I felt this was my way of doing something right for my body and mind, a way to destress from the hectic life I was living.  I continued to research different diets and lifestyles to heal my body.  But that research continued to only live in my mind and didn’t  make it into my day to day life.  My love of art and creating became my passion.  I felt my mind and soul healing and it had a calming effect on my life.

Then one day late 2015 I ate breakfast, and within 5 minutes I had diarrhea.  That one day turned into a daily occurrence.  Then the pain started. I pretended it wasn’t there.  I thought, if I could ignore it, it will go away.  But my ability to ignore it became harder and harder.  I started to take days off work, and started to have to cancel my plans with my friends and family.  But I still ignored it and didn’t want to face it.  I was too busy to deal with sickness.  I continued with my art as a way to escape what life was about to throw at me.

The day I knew the Crohn’s had awakened was the day I couldn’t wear jeans.  Wearing anything tight around my stomach was agony.  I knew the Crohn’s was back and I knew I needed to do something about it.  I went once again to my GP who told me straight ‘If you don’t deal with this now you will do no good to anyone’  she told me.  I thought of my kids and I thought of my husband.  I needed to face this.  My GP sent me to the ER.  They straight away admitted me to the hospital and started all the tests.  The MRI showed I had 30cms of my bowel affected by active Crohn’s.  I also had small perforations of the bowel.  I could no longer ignore it.  I was in the hospital for a week that time, then discharged for a week and back in for 10 days.  I was put on a high dose of steroids and started many long term medication that had success treating Crohn’s.  But the side effects from these medications are horrendous. I suffer from major tremors, my hair is falling out, major weight gain, insomnia, bad skin, extreme fatigue, low heart rate, painful joint pain in my hips, constant viruses, and my mental health was declining.  I took long unpaid sick leave from work.

Once again I was faced with everything being taken away from me. But this time I was a Mother, a wife and I had responsibilities that I never had when I was first diagnosed with Crohn’s.  The feeling of lack of control is one of the hardest things I find to deal with.  I learned very quickly I can only take it one day at a time, because how I feel today may not be how  I will feel tomorrow.  My home life quickly adapted to me being sick.   My husband and children quickly learned that they couldn’t rely on me anymore.  They all stepped up and helped out in their own ways.  Cuddles on the couch with me quickly became our way of making things better.

I started declining in my mental state.  Working in mental health I already knew how quickly it would be for me to sink into depression.  The feeling of loneliness is such a big part of this disease.  I found only a small handful of family and friends really understood what I was going through and supported me.  It is very easy to become let down and hurt by people when dealing with any chronic illness.  Most people didn’t understand how sick I was, or just assumed I was better.  Soon the invites, phone calls, and text messages stopped.  I started joining online social media support groups.  I was amazed how much this helped.  I gained so much knowledge on my disease and realized that the things I was experiencing, others were dealing with the same thing. Suddenly didn’t feel so alone.

I was able to work on my mental health.  I started trying to understand my emotions and why I was feeling the way I was at the time.  If I was feeling angry I would stop and focus on the real reason why I was feeling this way, most times anger equaled pain. When I was feeling lonely that was mostly because I had been in my bed all day, so I got up and laid on the couch around my family.  So each negative emotion I felt, I tried to connect with a reason and then changed my situation. I also kept reminding myself that the medication I was taking is playing a major part in my thoughts and feelings.

I continued with my art, but my whole way of creating changed.  Somedays I would only complete a background on canvas.  My hands shook so much I was unable to do anything with detail.  Somedays my art turned out dark and gloomy, other days it was bright and shiny.  I realized art was a way to express every feeling I was going through.  My art quickly became my therapy.  It became my healing.  Every piece of my art became an expression of my journey.  Every single detail that is on a canvas tells a story of what and how I was feeling when I painted it. I started creating journals.  I painted, drew and wrote every feeling down.  It was healing to read back and see how far I had come.  I started creating journals for others.  I gave them away to friends and family for presents, it soon became my passion for others to heal through being creative.

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I wish I could end my story saying I have gone back into remission and living life again, but I can’t.  Each day is a battle for me.  One day I will almost feel normal, and the next day I’m completely bedridden from pain and sickness.  I’m taking many prescription medications to settle the Crohn’s.  I struggle taking these as the side effects are sometimes worse than the Crohn’s symptoms.  I’ve also changed my diet, and am putting into practice everything I have learned.  I’m filling my body with probiotics, healing my gut with bone broth and eating clean and healthy foods.  I’m taking small steps to heal myself with diet, but most of all I’m continuing with my art as this is my biggest self-healing I can do.  I have found an amazing online community of people who experience what I do in their day to day lives.  It’s so helpful to have people who truly understand the struggle we all face living with a chronic illness.  Somedays I am able to support others, and then some days they are able to support me.

My future is still uncertain.  I’m still yet to find the right medication that works for me.  I’m still taking knowledge of different diets and lifestyles and making it work for me.  Trying to find the right combination is trial and error, but I do know that everything I am doing will eventually have a positive impact on my body and mind and hopefully put me back into remission one day.

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