My name is Shari, I am 20 years old from New South Wales, Australia. I work part-time at a supermarket, currently on leave because of UC. I have had UC for 7 years now. The disease has never really bothered me much until 2011 when I had my worst flare ever, still going through hell now but still have a smile on my face :)
When my bad flare started in April last year, I started going to the toilet abit more than usual. I kept saying to myself, you are not flaring, it’s just one of those 24hour bugs. Unfortunately I just became more ill. I was admitted into hospital because I had stopped eating and drinking, going to the toilet 20+ times with alot of blood/mucus and severe pain everywhere. I became so weak, to the point where I couldn’t walk, I lost 11 kilos and looked like a stick!
So my story is kind of long, but I guess everybody’s story is long!, Since being diagnosed and getting past that stage, I have never really had a problem with my Ulcerative Colitis. I could eat whatever I wanted, going to the toilet was always normal. I always felt like I never had anything wrong. Until April 2011, worst flare ever!!
I still wonder what caused me to flare so badly,
everybody always wonders what causes it to happen.
I know before I became ill, I was going out alot and drinking/mixing alot of alcohol. I never handled alcohol to well so I was always sick the next day. I also had the flu a few times and started drinking a diet shake to lose weight. I wonder if all them things mixed together just shook my body badly.
I have seen a few different doctors since this flare, they all say something different!.
The first doctor just said to me straight away:
” nothing is going to work for you so it’s chop chop”,
I told him where to go!
The doctor I see now, she can be a bit forgetful at times, but she has always tried to get my UC in control.
UC has changed my life extremely, mainly the medications have ruined me. I have been on prednisone for 12months, and suffering from every side effect possible. My face is puffy, I have a hump on my back, I have gained 15kilos in weight/fluid in my upper body and back. My hands shake all the time and I have the worst case of stretch marks possible :( . I am currently ill at the moment from coming off prednisone, having prednisone withdrawals so I have been vomiting quite abit. Now back on Hydrocortisone to see if that helps. I have been admitted into hospital 4times since last April, the last admission was when I began Remicade. I have to say it put me into remission in less than 24hours, which kind of scares me a bit. I never thought it was suppose to work so quickly. The sad thing though is I had every side effect possible, my neck and glands/face became that swollen that I couldn’t talk or breathe well. I had ulcers in my mouth, sneezing, coughing, heartburn, everything!
After my 2nd infusion and my doctor seen what I looked like, she cancelled my 3rd infusion. I will see her this Tuesday to start talking about surgery. I am nervous but excited at the same time. I just want this all to be over! I have researched so much about the surgeries and I am prepared for what might happen. The one big thing I worry about with the surgery, is the risks of infertility. I am only 20 and would love to have children someday soon. I think if I had the surgeries and became infertile, it would destroy me. Other than that worry, I just want to be healthy. I have been through alot and still going! I always tell myself, ” I will not let this disease rule me”
The good thing to come out of all of this,
is the support I have had from my family.
My parents and brother have been by my side through everyday, the weeks I spent in hospital, my mum was there. My family has always been very supportive, I don’t know what I would have done without them. Since becoming ill, I have lost alot of friends. People without this disease don’t seem to understand what we go through. It upsets me to know my friends think I am faking it, even if some days I look healthy. I always try to explain things to them but I get nowhere.
I would love to hear from anybody who is planning to have surgery,
or who has had surgery and their experiences through the whole procedure,
the more information and support I have, the better :)
I have been on every medication possible! When first diagnosed in 2006, I started off on Salofalk tablets and prednisone. It took awhile for the salofalk to kick in, but when it did I was great until I started having side effects. I was hearing things,hallucinating and having migraines. So I came off that med and started taking Salofalk granules. 2008 I flared again, back on prednisone, nothing was working so I then started taking 6-mp which worked well. I was good for a few years until 2011, throughout the past 12months I have been on the granules,6-mp,prednisone, hydrocortisone,salofalk enemas,steriod enemas, cycolsporine and finally remicade. I suffered severe side effects from cyclosporine which I was only on for 24hours and also bad side effects from the Remicade. My body just hated everything.
written by Shari
submitted in the Colitis Venting Area
My name is Shari, I am 20years old from New South Wales,Australia.I work part-time at a supermarket, currently on leave because of UC. I have had UC for 7years now, The disease has never really bothered me much until 2011 when I had my worst flare ever, still going through hell now but still have a smile on my face :)