Originally my purpose for writing about my Ulcerative Colitis
was purely for therapeutic reasons,
but given the opportunity to write about my experiences,
so others may gain some understanding
was to good to pass up.
I am currently 24 years of age; I was first misdiagnosed 3 years ago. After 6 months of suffering in silence because of stubbornness, I finally went to see my family doctor, who recommended I have a colonoscopy. My first diagnosis was that my bleeding was due to 10 polyps, which they removed from my colon. A year later my symptoms returned, and I was later correctly diagnosed with UC. Like many I’m sure, my first my reaction was one of ignorance, due to lack of understanding and knowledge. Neither my GP nor the doctors at the hospital sat me down to help me understand the seriousness of UC. So for the last two years I have been continuing to live my life as normal, not knowing that what I have could be life threatening, if I was to continue not looking after m yself.
It was only in the last 6 months that I had a major ‘flare up’, and was put on steroids that I decided to do my own research, where I have discovered that I am not alone. I stumbled across the UC Facebook page, which has been a godsend for me; I have learnt so much in such a small time, just from talking to people who have experience and knowledge about this disease. As you know UC can be embarrassing, inconvenient, painful, debilitating, isolating and lonely. But in the recent months I have found hope and relief, knowing I am not alone.
I feel there is a lack of information and understanding as the majority of people would not even know I am sick, purely because UC is a silent disease. As much as I try to act normal, many times my bowel begs to differ and I am left embarrassed and ashamed (if u know what I mean). Many of you will be nodding your head as you read this because you to have felt this. I have often considered taking an extra pair of underwear with me when I go out, but my pride gets the better of me. At the peak of my ‘flare up’ I was running to the toilet at least 15 times a day. Every time feeling like I was going to pass out from pain. The more we talk about our experiences, the more I hope we can discover about our disease.
The last 6 months have been very hard with frequent doctors appointments, hospital visits, blood tests, colonoscopies and trialling drugs. I have just finished my second dose of steroids, which has been hell. My self-confidence has flown out the window. I have gone from a confident and happy go-lucky person, to someone who doesn’t want to leave the house because of the acne, weight gain, moon face and stretch marks that I now have because of the steroids, that haven’t even relieved my symptoms completely.
What I have learnt about UC is that stress is NO good, which I find ironic because having health issues and stress go hand in hand. With the friendliness and help from complete strangers on Facebook, who live on the other side of the world, I have felt some relief for first time in years. I have often left my specialist appointments feeling bamboozled and confused, after asking questions and not getting a straight answer. I was told diet has no affect on UC at all. I was left thinking there has got to be more I can do! I only found out in the last few weeks that diet can affect the severity of UC, and there are certain supplements that can help to. Knowing there are other alternatives and that one day I can live drug free, like many others brings a smile to my face. I have learned to keep an open mind, and I am going to try acupuncture, and even go see a naturopath, who knows what treatment might help.
With the support of my family I am now living more positively and I hope I can help others like those who have helped me, by sharing my journey and knowledge so far. My older brother said something inspiring to me the other week. He said, “Life sometimes throws us a curve ball, but if anyone is going to get through this and come out the other side, better and wiser than they were before, it is you.” And he makes a point, I think this applies to anyone who is willing to change their lifestyle and frame of mind, and try new things. Like many I have been living with the question, “why me?” in the back of my mind, since my diagnosis. I am a young otherwise healthy person, with no other health issues, with no other family members with this disease. But this question has been holding me back, often making me feel sorry for myself. I have moved on from this and im looking forward to the future with a more positive attitude, instead asking questions like “should I be eating this?”
With knowledge comes happiness, so lets stick together and keep sharing our experiences, good and bad…
*the first story written by Shelley
Shelley has been dealing with symptoms for several years but only towards the end of 2010 did she encounter a serious colitis flare for the first time. Since then, she has come to terms with the potential seriousness of the disease, and has found strength in knowledge, and is finding ways to move forward with her life again.