My name is Ricky, a 28 year old male diagnosed Feb. 2012 with mild proctosigmoiditis.
I am currently living in the UK but heading back home to New Zealand shortly.
Hobbies include playing & composing music, fishing, traveling, camping and having a good time!
Loud stomach gurgling every now and then and nothing much else thankfully!
My Colitis Story:
I’m going to keep it simple…
I got diagnosed in February 2012 with mild proctosigmoiditis.
Symptoms for 7-8 years before hand – slight discomfort in lower left quadrant every few days.
First flare in may 2007 lasting 2 weeks. In remission until December 2012 (med free and unaware I had UC). In remission since mid Feb.
Since being diagnosed with this awful condition (although I’m a mild case) I have become a nervous wreck and can’t look or plan more than 1 day ahead of myself.
The thing I am most concerned about is will this disease kick my A*$ and get worse?, will I live a normal life in the future? and will I get any extraintestinal manifestations?..
I know nobody can answer these questions and that’s what really pi**es me off the most! Why the hell has this disease got no prognosis or typical course??
I would rather volunteer to have a leg removed in surgery with no anesthetic than have this for the rest of my life. At least if that happened the pain would be terrible but you’d get over it in a couple of weeks and there’s nothing else that can just crop up out of nowhere like gangrene and PSC!
Someone summed it up nicely for me the other day by saying ” having this disease is like being told someone’s going to try and kill you but you don’t know who and you don’t know when”.. I completely agree!!! That constant fear of the unknown is terrible. It’s frustrating and actually driving me insane. And I’m not kidding.
To me, trying to find answers is like walking around with an object in your hand asking everyone in the world 1 by 1 if they know what the object is because you need a correct answer for the million dollar question on who wants to be a millionaire, to just hear ” Sorry I don’t know?”..
All I want is some clear cut answers and this is where my questions below come into play:
– I would like to know if anyone out here has had elective surgery for mild UC while in remission or relapse? I do not want to take ANY medication as I don’t see the point in ruining my other healthy organs to then one day have to remove my colon anyway. Why prolong it..
– Can we opt at anytime to get our colon removed regardless of what condition it’s in?
-Does this seem crazy to you all or is it a good approach to take?
I have cut all processed food from my diet as well as cut down my weekly alcohol intake to around 2 standard units or so. I eat very healthily and work out often. I am not naive and know that this could only help keep me in remission for a limited amount of time however.
Sorry if this post is upsetting to the ones who have had their colons removed and people with a severe case, trust me I know i’m VERY lucky that I have a mild case but i’m trying to be proactive and get rid of the disease before I actually get worse. I know it’s autoimmune related but i’m certain that if the colon was gone, the immune system would go back to normal.
I think I could live with a bag and yes I know of all the possible complications but at least there’s no uncertainty with relapses and the like. It feels like the old Ricky is dead and there’s this new guy here in his place. He’s tired, angry, scared, frustrated and wants answers. And I’m pretty sure my girlfriend wants her old Ricky back too.
Feel free to tell me I’m crazy.
Thanks for reading.
Where I’d Like to be in 1 Year: