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