hello everyone, my names sully, i've been lurking around this board for a few months now, glad there is a place like this where people can go for information and support, a really good community here....
I'm 29 years old, was just diagnosed with crohn's disease about 3 weeks ago, finally got around to that colonoscopy....I pretty much already knew i had crohn's though from all the research i had done over the past year of the symptoms i had, that just confirmed it.....
It all started last december, i thought i had eaten something bad, all of a sudden i was going to the bathroom, straight liquid diarrhea every hour or less depending if i ate or drank something, it came on hard and strong....after a few days of this i developed anal fissures and hemorroids which added to the party, went to the ER 3 times over the next 3 weeks, all they did was hook me up to IV fluids then send me out the door, no diagnosis, no clue, telling them i felt like i was dieing, didn't help, i was dropping weight, fast, about 3 to 5 pounds a day....they did some random blood tests, after the 3rd visit they found out i had mono at the same time as this mysterious intestinal disease....so i recieved no treatment i was just sent home, told to rest and eat this brat diet stuff, bananas, rice cereal, applesauce, and toast to calm things down...looking back, how insane does that diet sound, i would never eat that stuff today knowing i have crohn's, well the toast works for me......anyway, these doctors didn't have a clue, so i lost faith in hospitals....
then i met a neighbor who is into natural healing with food, and got me eating basic foods, brown rice soup, oatmeal, only cooked veggies, chicken soup, etc, he also hooked me up with water everyday through his super crazy magnetic water filter system thing (best water i've ever had, very light and fluffy), and was giving me barley grass powder and lactoferrin....after a bit, all this started to help and the symptoms were backing off little by little until finally by late february my weight had stabalized at 150, i was 210 in december, so 60 pounds in around 3 months....
so now i was strong enough to work again and get out of the house, by keeping myself on track with diet and activity i was able to keep this remission through most of the spring and summer, don't get me wrong, it wasn't all happy times, there were setbacks here and there, constant anxiety about the bathroom and its location to me and whether it was occupied, the usually good stuff.....was having a real hard time trying to have a social life, and going out with friends, outdoors stuff was pretty much out of the question, no hiking this year, well i guess i could have, it doesn't bother me too much to poop outdoors.....constantly fatigued and weak and still trying to work, both my jobs were in kitchens standing all day.......
at some point the disease decided to attack my feet, my big toe on my right foot was twice the size of the big toe on my left, my right ankle was constantly swollen, and the heels of my feet were in constant pain, especially after standing then trying to pick them off the ground, so i was hobbling around all summer long, the only time i felt no pain and free, was when swimming, god i love swimming.....
then around mid august or so the full on flare came back....started making alot more trips to the bathroom, and had to quit one of my jobs....was trying to get control again with diet, since i figured it came back because i strayed from the basics a little too much, but this time it just wasn't working and over the past couple months lost another 30 pounds, so now i'm down to 120, so my family, obviously freaking out, forced me to go to a doctor, after the hour long talk i gave him about my symptoms, he was like, yeah, your obviously a text book case of IBD, and he didn't know why the ER visits last winter didn't figure that out right away.....so he immediately got me scheduled for a colonoscopy the next week, where they confirmed crohn's
then a week after taking asacol and prednisone, i was still feeling intense pain in my butt and stomache....so i went back to the GI doc, she looked at my butt, noticed the insane abscesses/fistulas that were going on there and sent me to the hospital i'm in now right away....i met with my surgeon/doctor, he checked me in, got me in for surgery the next morning, he drained out most of what was in there, then later in the day did a cat scan and saw how much more there was to get, so we let it drain on its own for the next few days....nasty days those were, very incontinent, pooping the bed, getting my butt wiped a few times a day.....getting pumped full of antibiotics, steroids, asacol, morphine, and whatever else.....then we did a second surgery, and it was very successful, got it all out it seems, and its healing nice, they put me on remicade, and i'm now back down from steromedrol to prednisone, off the flagyl, ampucillin and whatever other antibiotics...........i've been trying to keep a list of everything they've put me on over the past couple weeks but i lost track, a bunch of stuff.....
but since taking the remicade, everyday has been exponentially better than the one before, not sure if its just that, or that and the combo of everything else, but I'm finally starting to feel like a person again, and not a disease, my appetite is back in full force, i've even gained a few pounds, i've been healing so well that i should be getting out of here sometime tomorrow, we're just monitoring the surgery sites, my symptoms, and the pain medication right now, everything is looking good....had to switch from percocet to vicadin today though, the percs were just too dopey for me, i was conking out left and right on that stuff, the vicadin seems to be working really well, and i know i need it because i went without pain meds for a good stretch yesterday and over night, woke up feeling the pain in my bum full force.....
so now i finally have some kind of treatment plan for my crohn's that seems to be working and putting me in remission, and i have very good doctors that truly care and treat me like a person, i swear this hospital is the best one around....the staff has been unbelievable through all of this, and the financial person has gone way out of their way to set my life up, she got me qualified for the NH statewide free health coverage due to my income, so hospital visits, including remicade visit is free, she got me hooked up with food stamps, she is working on medicaid, and also social security disability coverage......she knows how to do it, and has done it for many people, really cares about me, and is working hard to get me the help i need.....
my family has also come through for me bigtime, my dad who i haven't seen in ten years has been with me everyday the past two weeks, and is getting me a new apartment near all the family and near all my doctors, so i'll have a huge support system all within half an hour drive....so things are really looking up right now, i truly feel blessed........this year has been the toughest of my life, many times where i thought i wasn't going to make it, and i probably should be dead with what my body has been through, but now, finally things have turned around, and i'm surrounded by love and light..........hopefully after a few months of healing, i'll gain my strength back and my weight back, and my life back........
thanks for all for listening to my rant, it got kind of long there....but just wanted you all to know about me, just as i've learned a bit about you from coming to this site over the past year....having a place where we can share our ups and downs, and get advice when we're in the dark is such an important thing, together we can all get through this and overcome this disease and live whatever lives we choose to live...
peace and love
sully