Making the most of everyday
After a turbulent Crohn’s disease diagnosis, Sara Ferola realised how important it is to raise awareness of IBD and has become an avid advocate and fundraiser.
In 2017, I gave birth to my second child, a little boy. Ever since having my second child I knew something was not quite right. I was constantly sick with colds, flus and then in 2018 developed a cough that just would not go away. I remember telling my husband it was not a normal cough. I felt like my chest was always cold, there was always a lump feeling in my throat and a feeling like I was out of breath. Before all this, I was diagnosed with coeliac disease in 2009 which had been very well managed, so when I started feeling stomach pains again my doctors kept saying it was the endless amounts of antibiotics I had taken over the past two years or so.
Time went on and I just kept feeling worse. By the end of 2019 I was at my worst. I had debilitating stomach pains all the time, started going to the toilet more than 10 times a day, and had excruciating bottom pain that became so bad it felt like I was passing glass each time I went to the toilet. Still, after going to emergency twice at two different hospitals, I got sent home and was told it was IBS, fissures, gastro or anxiety. It was around Christmas 2019 when my life was hell. I had two kids under four, had a business to run, was going through some personal stresses and became completely incontinent. I was trying to keep life as normal as possible but I could barely get out of the bed to read my children a story. Still, doctors and specialists were telling me it was stress and I had to find ways to calm down.
This only made me more stressed as I knew deep down what I was feeling was not normal. I was always in pain, my bottom was painful and swollen, I always had stomach acid and reflux, a terrible cough that made me feel like I could not breath, weight loss, and was repeatedly getting dismissed. I hate that I felt like
I had to question myself and started to believe people that nothing was wrong. I even got asked by one doctor if I was taking laxatives to lose weight.
I then started seeing scary amounts of blood in the toilet and knew something had to be done. I went back to the specialist and demanded a colonoscopy after he told me on two other occasions it was not necessary. It was after this that they found I had severe perianal Crohn’s disease that had also inflamed my entire esophagus which explained the ongoing cough I had for over a year.
I was then sent to see a specialist that specialises in Crohn’s. I was put straight on steroids and some medication to manage my Crohn’s. After not finding much success with this specialist I started to look for and found a top specialist in Melbourne. He also tried some more oral medication, but we found nothing was working and after several months of no change and not being able to come off steroids or hold solid food down, and constant excruciating pain, he admitted me to hospital. Emotionally and physically, I was at my worst, so the specialist suggested we look at starting a biologic treatment (Stelara). I was desperate for relief at this point and agreed.
I started the treatment in late June 2020 and found it did not work in any great hurry, so I spent all of 2020 in constant pain and unable to come off steroids, which in itself caused a list of their own problems. I also had five colonoscopies in 12 months and by February 2021 I finally started to see some hope in Stelara. After 11 months on Stelara, I am finally off steroids (yay) but still have to watch what I eat. After being on a liquid diet for six months (from May-November 2020) re-introducing foods has been difficult and currently I have not been able to re-introduce sugar, fruit, red meat and some vegetables. But after the pain I was in last year I am thankful I now have days where I can get up and start doing normal activities like working and running around after my two kids.
Family Adjustments
When I was first diagnosed, I was very angry and found it hard to accept the diagnosis. My anxiety hit an all-time high, so much so that even staying at home by myself became impossible. Mentally I was in a dark place. I was no longer able to perform simple tasks like taking a shower without being curled over in pain and it made me feel like I was living to watch everyone else live.
The impact on my kids, three- and fiveyears old, broke my heart because if felt like they did not remember me well. My three-year-old especially as I have been unwell since just after he was born. It became normal to sit with me in bed or on the couch because these were the only activities I could physically do with them. I was in so much pain for the first six months after being diagnosed that I could not even look after my own kids without help.
My husband found it really hard, and while he does not talk very much about his emotions, I saw the toll it took on him too. He was taking time off to help me with the kids and many of his friends, at first, did not understand why he too had to give up social outings to stay at home when I was home to look after the kids. I even saw him start smoking again after five years of giving up, which he says was because of the stress.Everyday Extras The fallout from Crohn’s has made me do a complete overhaul of how I manage commitments to be honest. I now make sure first and foremost that I have enough energy to do everything my kids need from me and then whatever energy I have left over I can give to other things and other people. Some days that means I can make dinner for a family birthday while other days I barley have enough energy left to take a shower.
At first, I felt bad and worried about what everyone else might think of me when I had to cancel plans and if they found it rude. But now I have a very strong awareness of what my body can and can’t do. I now believe that people who are your true supporters will understand and be there when you are ok.
Food has also impacted my symptoms dramatically, so for the first six months I had a limited diet of bone broth, fish, potatoes and sweet potatoes. Only in the last few months have I started to reintroduce some foods and even then, I still struggle with so much:
- Eating out – I have to call and research everywhere I go
- Making sure there are always toilets around
- Making sure I carry wipes as toilet paper is unusable on my perianal Crohn’s
- Cooking two meals most nights (one for me and one for the family)
- Working through severe fatigue most days
- Side effects of medications
- Bearing the emotional burden
What Lies Ahead
Personally, I am much calmer and positive about managing Crohn’s these days. While I don’t know what journey my Crohn’s will take me on, I still set goals for myself each year and don’t waste my good days. There are of course certain things like having more
children (which I had not completely decided on) but now due to my illness has been decided for me. I know some things I may not be able to do, but my view is to not harp on about what I can’t do and focus more on what I can do. One positive is being able to now educate people on IBD, something I knew very little about, and build my business.
Because I have my own business and work at homes most days, I chose not to tell any of my clients at first as I was worried about the impact it would have on my business. Now that I am more accepting of my illness and my journey I have been very open with people who ask. I still however find I downplay my bad days.
I feel like the closest people to me understand as much as they can, but I feel like I am alone at times, as it is very hard for most people to understand being in some form of pain every day. I have had a lot of people tell me lately that I look better, and in turn have stopped asking how I am because on the outside I look ok. But honestly, I can’t remember the last time I woke up without pain or symptoms to manage in that day, and that’s a hard thing for anyone to wrap their head around if they have not experienced a chronic illness.
I decided to fundraise to tackle the lack of awareness of IBD. When I was diagnosed there was almost no one I told that knew what it was. I saw firsthand how debilitating this illness can be. A lot of people still put it in the same category as IBS, not to mention how dismissive some doctors can be which leads to delays in diagnosis and have serious implications for people’s health and wellbeing.
A New Normal
Having IBD, our bodies go through so much and learning to truly appreciate and care for yourself, that has been my biggest lesson. When I was diagnosed, I spent so long being angry at my body, upset at the weight fluctuation, angry at what I could not do, anxious at the amount of medication I had to take because my body could not do it on its own; but all that ever did was get me further and further into a rut. Through learning self-love (and I am still learning) I find I am calmer and more loving towards my body and in turn the stress from the hate I used to have has gone. That alone has been a huge game changer for my anxiety.
I make sure I start every day practicing gratitude and yoga. I make sure I also eat clean every day, however on really bad days, I pull it right back and make some homemade bone broth and drink it each day. I have also learnt when I have to say no to things and clear some days for me to stay home and rest my body.
Stop worrying about what tomorrow will bring. Deal with your symptoms for today, be gentle with yourself as you are doing the best you can. This is something I learnt off someone that had overcome cancer. She said to me if you spend every day worrying about what your illness could do, you will never enjoy the wins. But if you learn to wake up and only deal with the symptoms you feel today, you have smaller hurdles to jump. She taught me to learn to be present and enjoy the better days.
Sara Ferola raised an incredible $6,030 during Awareness Month. Thank you for your amazing efforts Sara!