I’m 45 years old, live in South Carolina, am owned by 3 Cats, ride motorcycles (well used to, hope to again after this), love my job, my close friends and in general making people laugh!!
Like so many others: I have diarrhea (fast and with NO warning), pain (tho not constant), big weight loss, cramps and spasms (those are the worst), fevers, and enough noises from my midriff that I often wonder about aliens… LOL
If you’d told me a year ago, that I would be living in my bathroom, living off of only 4 types of foods, losing weight by the week, and have every future plan I ever made disappear into the mist, I would have told you to stop drinking that cheap wine, get off my floor and let me call you a cab to take you home… For 44 years, I’ve been unbelievably healthy… As I told my first ER doctor earlier this year, physically, I’m very boring… And I had NO idea how lucky I really was… My life hasn’t been perfect; far from it… I lived in an abusive marriage for 21 years, had two kids that from time to time I swore I saw a 666 under their hairline, and in general was never bored with the escapades of things that would happen to me… But through it all, I’ve always kept my optimistic point of view… I find humor in everything… I’m compelled to… So, knowing that, let’s begin&helli p;
June of 2011, I began having bouts of immediate diarrhea… Many a day… No pain, my appetite was still there, but I couldn’t figure out what I’d eaten to cause the “runs”… After a week of normal things you do to try and heal yourself, the runs got a little worse… Did some research, thought about what I’d done just prior to all this, and finally called someone to get a doctor… (Never had one before, never needed it…) Got a doc, who, believe it or not, diagnosed me with….wait for it…a bladder infection… (I know the look you have on your face… it’s the same one I had…) Decided she was loopy, so went home, started home treatment again and lo and behold, by July, I was fine… Whew!
Fast forward please… Slowly, slowly, ok, to June 3rd of this year… Out of nowhere, the runs came back… Huh… Ok, back to home remedies… Exactly 3 weeks later, the pain showed up in the form of spasms… Spasms that I can only relate to, in the form of labor pains… Appetite disappeared… For the next 10 days, I was between my bed and the bathroom floor… I was so stubborn that I called no one for help… I sequestered myself at home until I simply couldn’t walk anymore… I had no energy, almost out of TP (and isn’t THAT the true emergency here?), and I finally reached out… I ended up at the ER…
The Reader’s digest version of the next 7 weeks is: between that ER visit, 3 visits with my now former Primary care Doc, 1 more visit to the ER, and it was tentatively decided I had diverticulitis… The most any of those Docs did was take a CT scan, and one (count ’em) one round of bloodwork… I finally got so angry one day that I called and demanded that my now former primary care idiot, er um doctor, give me the GI referral that he’d promised me 3 weeks earlier… He finally produced it, and the appointment wasn’t for another 10 days…
During that time I journaled everything that had gone on… Every detail, every thing… I think my new GI liked this because he read through it, asked me a few questions and within only 5 minutes decided two things: 1) It was NOT diverticulitis, and 2) I needed a colonoscopy immediately… Now for someone who, as you recall, is physically very boring, this whole “poke and scope” was very scary!! BUT in true fashion, I made sure I had a pair of really cool fun socks to wear! Afterwards, his diagnosis came fast, and he was very sure… UC… Being the research nut that I am, you can bet that once home and finally conscious again I did all the research I could on UC…
He put me on Lialda, which worked for exactly 2 weeks… Seriously… 14 days… At the of the 14 days, it just stopped… Everything came back… My GI and I had said we’d wanted to avoid steroids, so we tried a quick bout of antibiotics… Nope, made it even worse… So this past Thursday he took me off both of those, and increased the steroid by one pill a day… I think we who have UC will agree, that we not only notice the small joys, but we revel in them… Ok then, in the last 24 hours I’ve only had one very small attack, and for the first time in over 3 months I slept for almost 10 hours last night!! I’m so happy right now, I can’t stand myself… I’m cooking up some meals, doing laundry, and in general sitting here loving the fact that I’m NOT running to the loo… Yes, the steroid is a temporary fix, I know this… But for the moment, for this one brief moment of time, I’m eating, happy, and allowing my body to rest…
I meet with my GI Tuesday and we’ll see where I stand… (Or in this case, sit)… I’m sure a new therapy is but a couple of days away and I look forward to it… I’m nervous about my future, and try not to dismiss all those plans I used to have… I’m a pack rat and throw nothing away, so I’m holding all those old plans in an old mental box for later… I worry about new therapies… I see some successes in stories I read… And as a professional speaker and lover of humor, I am gathering fodder for future speeches… And the most important piece of all, for someone who is NOT used to asking for help, I have found friends… I don’t mean friends I didn’t know I had… But friends I’m not accustomed to having in my life… Friends who ask for nothing in return, are at my door in a minute’s notice, and who care for me more than anyone has ever cared for me before&helli p;
So yes, I’m new to this and haven’t acquired all the hash marks that many of you have… But I’m here, I’m ready to learn, I’m ready to make people laugh when I can, and I’m ready to see what new plans this world has for me… I’m sure that those stones under my feet are not the same ones that were there three months ago… So now my job is to inspect them, flip them over and see where they’re leading… So let’s get started!
Where I’d like to be in 1 year:
I’d like to be rich, healthy, beautiful, and free to live my life the way I want… What I do I HOPE for in a year? Well that’s a little different… I’d like…no…love to be in remission… I’d love to find others who are newly diagnosed and help them walk the path of moving stones… I hope to find a therapy combined with diet that will let me back on to my motorcycle, back to my the speech coaching that I love to do so much, and back to me…. Just back to me…
written by Storm Cat
submitted in the colitis venting area