Knowledge = Happiness – My UC Story

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’s story is now entered into the 2011 Ulcerative Colitis Writing Contest!!! You Can Join too, click here for details

5 thoughts on “Knowledge = Happiness – My UC Story”

  1. Knowledge is definitely power. Power to know what we have. Power to understand it. Power to move to make our “flares” easier to deal with. Power to share with others who do not know what we have and it’s more than just “in our minds”.

    I spent my entire life since age 5 with medical problems ranging from arthritic pain and burning sensations in my feet and hands, sun sensitivity that resulted in a rash that would blister, depression that lead to alcohol and drug use to combat the symptoms, internal bleeding in the stool, going to the bathroom quite frequently, cuts and bruises that wouldn’t heal, being more vulnerable to ear infections/tonsillitis/asthma/ and just feeling sick and tired of this BS.

    A good doctor brought in a resident intern from China and he was able to diagnose me with UC and said that every major illness from the past and present were a direct symptom to UC. Oh that was like winning the lottery for me. I had a legitimate answer to what was going on with me. And you are right, we can find strength, and thus we can move.

    Finally, I refuse to be called a victim or a sufferer of UC but rather, as a recipient because it is what we do with our knowledge of UC to make life better for ourselves and all of us with UC.

  2. Hi Shelley! I’m happy you found us! I love reading these stories so much. I was definitely nodding along when reading yours.

    “I have often considered taking an extra pair of underwear with me when I go out, but my pride gets the better of me.”

    Take the undies! Don’t let pride stop you. No one has to know you are carrying extra underwear. I think that knowing I’m prepared like that gives me confidence when I have to go out and I feel less anxious. On bad days I’ll even wear an overnight pad (yeah, like for periods) to be safe.

    1. thanks for the support it really warms my heart, everybody is so enthusiastic to offer help. finally i have somewhere to look for guidance its awesome. i will have to try the pad idea steph, better safe than sorry :) those are some very wise and inspirational words Jonz…hope everybody finds some relief soon!

  3. DO NOT BELIEVE YOU HAVE THIS DISEASE SO EASILLY. I was diagnosed in 99; doctor told me I had it while I was still seated in his office with my clothes on still having a discussion; then proceeded to do a flexible stygmoidoscopy which he said confirmed his findings…took Asacol 9 years…had numerous side effects; uncontrollable belching; exhaustion;weird head pains;…went to another doctor; had a colonoscopy; no signs of UC; another colonoscopy a year later; again no signs of UC…took myself off the asacol gradually…3 years later; no problems; aside from some of the problems brough on from the Asacol remain…this doctor who diagnosed me and is supposedly so well regarded in his field conveniently lost all records of my initial diagnosis (or should I say misdiagnosis)…prior to this problem; I had been bitten by an animal and was taking antibiotics…likely antibiotics caused all the intestinal problems; which I never had before and have never had since.

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