- Joined
- May 1, 2012
- Messages
- 180
Hi all
I started posting in the intro but thought this story was better here.
So brief history. According to any dr i have seen so far, i am what they call a "complex" case.....that does nothing to reassure me.
December 2010 got diahreea, assumed it was the flu as everyone had it that year. Diahreea didnt go away, in fact it got so bad that anytime i ate, i literally would hace to run. I wouldnt make it through any meal without having to get up and go....which always ruined my appitite. I ended up getting so bad i was averaging a weight loss of 4lbs a week. I was working full time from home running a daycare and found that if i didnt eat, i didnt have the runs. So therefore i survived my day on water and applesauce. The o ly food that didnt seem to upset my tummy. Fast forward......family dr suggested i had Celiac, blood work came back inconclusive. So referred me to a local Gastro dr. couldnt get in to see him for 3 months. With my calculations, after 3 months i would have lost enough weight to be underweight. And i started overweight.
Then my bum became sore, very sore and itchy. Dr advised i most likely had hemmrhoids, prescribed cream. Then the pain got worse and worse. I also then started hving episodes of bloody stools.
By march i was in so much pain in my anus area and butt cheeks it hurt to walk. My family dr was convinced it was "nothing' and never did or checked. Just kept telling me to hold on til i saw the GI. Well then one day i was in so much pain i was phsically sick. couldnt walk, couldnt roll over couldnt do anything. Then later that night I had an abscess rupture. Although didnt know it was at the time. At emerg the next day, the dr told me to was large, fist size.....and horrible looking. She said she was glad it had ruptured on its on.
I will skp all the stupid dr stories and people who told me it wasnt a big deal and move on ......
ended up after a month on antibiotics that i got it lanced, started to heal, then it became a fistula.
Surgeon i saw at emerg kept seeing me and finally a year later after scopes and poking and needles referred to me the big hospital and the specialist--colorectal surgeon.
months later got an appt. in this time i had a drain put in for my fistula and then developed another fistula in my other butt cheek.
more tests, more antibiotics, more poking more pain. more diahreea, more blood......
now a year and half later everyone agrees i have Crohns Except now i am being referred to a Gastro specialist who will give me the final dianogsis and confirm i have it and then maybe i can start treatment.
the downside, they wont do surgery to take out the drain til they see how treatment goes.
I know nothing of treatment. I do know that i am terrified of everthing right now. Sick o being in pain. Sick of having my bum hurt.
I couldnt handle having my first abscess packed and am terrified of having anymore or antyhing else packed. The nurse who did it acted like i should suck it up and deal......but it freakin hurt!!!! I'd rather the abscess pain then the packing.
So i am stuck.....i have a fistula on each side, which for the most part are very inactive, i have the seton in now for almost a year and have no idea what the plan is........
you have no idea how relieved i am to have found this board.
I started posting in the intro but thought this story was better here.
So brief history. According to any dr i have seen so far, i am what they call a "complex" case.....that does nothing to reassure me.
December 2010 got diahreea, assumed it was the flu as everyone had it that year. Diahreea didnt go away, in fact it got so bad that anytime i ate, i literally would hace to run. I wouldnt make it through any meal without having to get up and go....which always ruined my appitite. I ended up getting so bad i was averaging a weight loss of 4lbs a week. I was working full time from home running a daycare and found that if i didnt eat, i didnt have the runs. So therefore i survived my day on water and applesauce. The o ly food that didnt seem to upset my tummy. Fast forward......family dr suggested i had Celiac, blood work came back inconclusive. So referred me to a local Gastro dr. couldnt get in to see him for 3 months. With my calculations, after 3 months i would have lost enough weight to be underweight. And i started overweight.
Then my bum became sore, very sore and itchy. Dr advised i most likely had hemmrhoids, prescribed cream. Then the pain got worse and worse. I also then started hving episodes of bloody stools.
By march i was in so much pain in my anus area and butt cheeks it hurt to walk. My family dr was convinced it was "nothing' and never did or checked. Just kept telling me to hold on til i saw the GI. Well then one day i was in so much pain i was phsically sick. couldnt walk, couldnt roll over couldnt do anything. Then later that night I had an abscess rupture. Although didnt know it was at the time. At emerg the next day, the dr told me to was large, fist size.....and horrible looking. She said she was glad it had ruptured on its on.
I will skp all the stupid dr stories and people who told me it wasnt a big deal and move on ......
ended up after a month on antibiotics that i got it lanced, started to heal, then it became a fistula.
Surgeon i saw at emerg kept seeing me and finally a year later after scopes and poking and needles referred to me the big hospital and the specialist--colorectal surgeon.
months later got an appt. in this time i had a drain put in for my fistula and then developed another fistula in my other butt cheek.
more tests, more antibiotics, more poking more pain. more diahreea, more blood......
now a year and half later everyone agrees i have Crohns Except now i am being referred to a Gastro specialist who will give me the final dianogsis and confirm i have it and then maybe i can start treatment.
the downside, they wont do surgery to take out the drain til they see how treatment goes.
I know nothing of treatment. I do know that i am terrified of everthing right now. Sick o being in pain. Sick of having my bum hurt.
I couldnt handle having my first abscess packed and am terrified of having anymore or antyhing else packed. The nurse who did it acted like i should suck it up and deal......but it freakin hurt!!!! I'd rather the abscess pain then the packing.
So i am stuck.....i have a fistula on each side, which for the most part are very inactive, i have the seton in now for almost a year and have no idea what the plan is........
you have no idea how relieved i am to have found this board.
I'm very glad you've found us and hope we can help you through what sounds like a bit of a nightmare :-( Unfortunately it does sound like Crohns, but you've probably got to the stage that lots of us who had to wait for diagnosis got to. Just wanting to know for sure what's wrong so you can get something to make it right.
