Living with Ulcerative Colitis.
Updated: Aug 7, 2020
I’ve wanted to open up about this for so long.
I’ve thought about it many times. Since 19 years old I wrote a lot about my feelings of living with a chronic disease: diary entries, paper notes, digital notes, poems, songs. I always expressed somehow the pain that I had inside, but making it public always scared me.
Those of you reading this, I hope you don’t also suffer from Ulcerative Colitis, and if you’re fortunate enough to not have this chronic disease than I doubt you know what it is. Let's start from the beginning.
What is Ulcerative Colitis?
It is an inflammatory bowel disease that affects the colon (large intestine). It is also an autoimmune disease which means that the immune system produces antibodies that attack normal body tissues. Your body attacks itself. It sees a part of your body as a disease and tries to combat it. The symptoms are different, from strong abdominal pain to vomit and fever. The most common symptoms are heavy diarrhoea and bloody stools. The medical world still considers this disease chronic and incurable with no known causes. The only treatments recommended are heavy doses of different kinds of medications, and in a worse scenario a surgical procedure to remove your colon. And even with surgery the disease is not considered cured.
I still remember the first time when the doctor diagnosed me with this disease,
"I know it is hard to hear at 19 years old, but this is serious. You will have this your entire life. You will need to take medications all your life and if there are further complications we may need to surgically remove your colon, because
otherwise you risk cancer and death. And by the way the medications that you will need to take are strong. You may experience side-effects and if you decide to have a child one day you need to undergo some tests as you may become sterile."
I was speechless. I never imagined that this could happen to me. Eventually I made myself strong and accepted my fate; more for my mum. Or at least I thought I had accepted it, but I didn't know what lay ahead of me.
The story is long, and maybe one day I'll write a book.
In 7 years with this chronic disease I became an expert about it. Or at least I was constantly hungry for knowledge, and curious to seek out other ways to live that didn’t involve accepting my suffering while waiting to die.
Eventually I understood that there are other paths, and maybe even ways to reverse and cure the disease. However I would be bullshitting if I said I had found the ultimate solution.
Fake it until you make it
Fake it till you make it. A mantra often echoing in my mind. About a month ago I recognised something was wrong in my body. My fears was that the Ulcerative Colitis had decided to be a bitch one more time. After a shift at work, I went to the beach to walk barefoot in the sand. Connecting with nature has always been the best for me. I pushed the fears away, tried to relax and reconnect with myself, and create some order in my mind
Suddenly a sharp pain hit me on the left side of my belly. It felt like someone was squeezing my gut from the inside. I knew the pain. It is what I was fearing the most, the beginning of another period of agony.
If you’ve ever had bad food you may know the feeling of looking for the nearest toilet before it’s too late. You feel that you are about to implode. You get dizzy, get a cold sweat, and start to pray to God that you don't shit your pants saving yourself from the embarrassment. This is pretty much what happened to me that day and many other countless times in the past. Not because of bad food or just diarrhoea, but because of the Ulcerative Colitis waking again and my rectum filling with blood and mucus coming from the open ulcers inside me. The inside of me was like a bottle needing to be emptied before it spilled.
In 7 years with Ulcerative Colitis, I’ve learnt techniques to control these situations. Deep breathing. Calmly inhaling from my nose, and exhaling from my mouth while trying to control these urgencies at least until I got home.
Thousands of thoughts came to my mind. All my fears crashing on me at once; what if this time the disease gets worse, what if I start bleeding out before I get home, what if I need a surgery, what if I have to go back to Italy again? What if? What if? What if?! Fuck!
Another thing I’ve learnt in the 7 years with this disease is that negative thoughts attract more negative thoughts, while making everything worse. So there I was sitting at the bus stop waiting for the bus to come, taking deep breaths, smiling, still and present, and repeating to myself over and over “fake it till you make it, fake it till you make it...”.
Because Ulcerative Colitis is considered an incurable disease, people can go years symptom free. They can even forget about it until suddenly the disease decides to come back. This is considered a ‘flare up’.
Last time I had a bad flare up was in May 2017. My life was great and I had thought I finally found a way to keep the disease dormant. I was following a Paleo diet at the time, and I had been in remission for about six months straight. Little did I know how harmful red meat, poultry, eggs, and huge amounts of nuts are on the intestine.
The gastroenterologist, advising me at the time, told me to take stronger drugs similar to chemotherapy and told me to consider surgery. No, thank you! So with
fear, but also a kind of inexplicable hope inside my heart, I decided to go back in Italy.
Even during the most negative times I always had faith and the belief that I could heal without invasive medical procedures. The body is a perfect bio-machine. It is able to self-heal when given the right tools (food and environment). I did my research, adopted a whole food plant-based diet, changed my lifestyle, took a lot of rest, and became more spiritual and mindful. Eventually the symptoms faded away, I gained energy again, and thought once more that I had mastered the disease.
For 2 years I did okay. No major bleedings, no extreme weight loss, and my blood tests were perfect. An extra plus, I reduced some of the medication and
stopped using others. I was ready to go back to Australia. If I had been able to enjoy Australia while I was sick, imagine now that I had been healed.
Since landing in Australia I went on super productive mode. I found a job, found a house, went surfing, trained my dancing hard, entered dance competitions, worked on my health coaching practice, and got side jobs with dance shows and modelling. Everything. You name it and I was keen to do it! I was full of life, full of energy, and disease free! I felt unstoppable.
But during the six months since returning down under, I forgot about something really important; being present and not over stressing my body. I relaxed in what I was eating; consuming more oils, and eating less healthy foods when eating out. These were indirect stresses, and as if the Ulcerative Colitis had been waiting until my guard went down, the symptoms came back.
All of my life I have been a positive person, always seeing the bright side in any given situation. I remember when I broke my knee, and the surgeon telling me that maybe I would not dance again. It didn't stop me. But honestly, everything became harder since I being diagnosed with Ulcerative Colitis.
Often I panic, demons of fear screaming inside me. Thinking of the future is really hard. I’m scared.
When I look back at my life, even with the fear I have done a lot. I’ve travelled in many places around the world; I lived far from home for a long time; I have reached goals of which I am proud; and I have proved to myself that even if I am labeled with a disease that is considered ‘incurable’, I could do it!
Obviously, it is easier to be brave and courageous when the symptoms aren’t there. It is easier to feel strong when there is no bleeding and pain. One thing that is for sure is that I am not going to give up.
Strong mind, surrender and acceptance.
Along with all the crippling and annoying physical symptoms caused by Ulcerative Colitis, in my opinion it is the mind that is most affected.
One of the most recurrent questions that I have asked, and many times still ask myself is "why me?". "Do I deserve this?". Obviously, I don’t deserve it, but even if I live my healthiest life, and eat the healthiest foods, why does it keep happening?
If I talk to a doctor the answer would be,
"Because you’re going to have this all your life. It is a chronic condition, and you can't do anything about it".
To be honest, I don’t accept it. Especially since these same doctors wanted to cut me open or wanted to give me medication similar to chemotherapy. They never considered food and lifestyle changes, which I decided to make and has improved my health.
Scientifically it has been proven that people suffering from a chronic disease, especially when the gut is involved, are most likely to suffer depression as well. An Italian study found that Ulcerative Colitis suppresses positive emotions. So according to them, must I accept that I will have this disease all my life and keep suffering from pain and bleedings? And also must I accept that I can't be happy anymore?
Probably accepting all this would be the easiest way. Giving up and just waiting to eventually die one day.
But I can't, I don’t want too! I am ready to surrender, but not to give up! I am ready to accept, but not to let go my life.
It is easy to get angry and frustrated, especially when you see other people living and seeming healthier, happier, and eating whatever they want without worrying over the consequences.
I’ve had times where the frustration got me to the point of saying,
"Fuck it, I am just gonna get a burger, fries, and a shake at McDonalds" which by the way I haven’t eaten in 10 years since the Ulcerative Colitis and since adopting a whole food plant-based lifestyle.
Fortunately I have been strong, and I haven't done it. But, the frustration sometimes brings me to the point to just let go and give up.
This blog post is different from the others that I usually post. There aren’t delicious recipes or advice on healthy living. This is just the vulnerable truth and
reality in a pure raw form, of a life with the chronic disease, Ulcerative Colitis.
I’ve always spoken in an open way about the disease, but I’ve never exposed myself during the times where I was suffering the most.
I am not looking for attention or for pity. I wrote this because I needed to vent my feelings somehow, especially during a time where I don’t have the physical strength to dance or surf.
I’ve written this to raise awareness about chronic disease. Many people like myself suffer from an irritable bowel disease, and they usually close themselves to the world. It’s easy for them to get stuck in circles of suffering and pain, left alone and never understood.
I wrote this because I want to give hope and strength to myself and others suffering from a chronic conditions. Don’t give up! There are many successful stories out there, so let's be positive and hope for a good outcome. Work towards this by primarily changing your way of living; the people around you; the way you eat; and the way you think.
I wrote this for anyone that has just been diagnosed with Ulcerative Colitis or Chron's Disease. Expect suffering and pain and expect hard times, but don’t give up! You can do it! Look always for a second opinion, do your own research, and become an expert of your own body. Nobody knows you better than you.
I wrote this as well for everybody else. This disease, Ulcerative Colitis, like many other diseases was once very rare. However, now the number of young people suffering from maladies like this is drastically increasing becoming a normality. So take care about your health. Prevent before needing to cure. Don’t wait till it’s too late, because once you’ve been diagnosed—at least according to modern medicine—it stays with you for life.
I used to wish to have millions of dollars and to be a highly successful person. Obviously I still wish it, but now my main desire has changed. I wish to wake up in the morning, and go to the toilet to take a nice, smooth, sausage-like dump with all my symptoms gone to never come back again.
It’s funny how the desires between a healthy and a sick person can change.
Ulcerative Colitis warrior
Feel free to support me with my battle and my healing journey