Skip to content

Totally Alone – Diagnosed with Colitis Monday July 2, 2012

Meet Scarlett:
I’m 33 and have had symptoms since I was about 12.. I was diagnosed Monday 7/2/12. I’m pretty upset and feel really alone since everybody who doesn’t know keeps saying it won’t affect my quality of life in any way… I’d like to believe that’s true, but then I read stories online.. it seems that NOBODY is the same after being diagnosed. I’m really really scared. To be alone, misunderstood, and scared while facing a newly diagnosed chronic disease is not where I pictured myself at this stage in my life. It’s ALREADY affecting my job… all these doctor appointments, and every day is a struggle to open my eyes, let alone get out of bed and put a smile on my face and deal with everybody else’s problems. I just got promoted and will likely have to step down. :(
My Symptoms:
In the midst of my worst flare ever… passing out, lost about 20 lbs over the course of time (I’m short and already very thin framed). I’m totally self conscious and hate when people innocently say I’m lucky to be so thin.. I LOOK sick!! I’m not anemic… but losing a lot of blood, VERY run down… and pretty depressed.
Today I had 2 solid bowel movements… 1 with no visible blood.. I feel hopeful, but my colonoscopy is Friday, we’ll see.

My Colitis Story:

I ALWAYS thought it was Hemorrhoids and thought they were caused from riding horses… until very recently when I passed out for no known reason and went to the dr… I mentioned in passing the UC Symptoms I was having and she immediately told me to go to a specialist… I was scheduled for a Sigmoidoscopy… the Dr took 1 look and told me he wasn’t going to continue, and I will be going in for a Colonoscopy to determine the extent of the damage to my Colon next Friday… I feel so alone. I’m in a new town, no friends, no family here – have to go to my colonoscopy alone, and beg somebody I hardly know to drive me to and from.. Nobody in my family understands and they all say I should just put a smile on my face and keep on keeping on… I know they are trying to be helpful but I’m really depressed about this. I’ve lost loved ones already over the fact that they don’t understand what I’m going through and don&# 039;t want to listen to me as I find out more and more scary things about this.. or do their research to learn what I’m dealing with… they would rather just move on and not deal with somebody who is so broken.
I’m really worried about my quality of life going forward… ESPECIALLY my 1 passion in this world… Horseback riding. I’ve read stories where people can’t ride anymore with this disease, even with (especially with?) a J-Pouch. Does anybody here ride horses regularly? It’s been a pretty big part of my life for 23 years, and I can’t imagine being with out my horse.
How about having a baby? It’s gotta be common and possible with the onset of this being so young… please tell me I don’t have to worry about that… :(
I eat horribly.. and I like it.. I’m not sure how I’m going to cope with such a limited diet like I’ve been seeing people talking about. and I HATE Yogurt :(

Where I’d like to be in 1 year:
I’d LIKE to have a baby… I really hope that’s still an option for me… other than that, I’d ideally like to be able to ride my horse still, and eat like a normal person and be in remission… hey, it says where I’d Like to be right? (yes, I’m moving past denial… slowly).

Colitis Medications I’ve Used:
Nothing other than my multivitamin, fish oil, and D3 (I’ve always taken them)… my doctor is still determining the severity as it’s been less than a week.. I really don’t want to go on anything long term, I’d rather just go on meds to help when I’m in a flare. I’d almost rather live with this horrible flare than to be on steroids for the rest of my life. This is NOT going to be a smooth road for me.

written by Scarlett

submitted in the colitis venting area