Posted 3/19/2014 3:58 AM (GMT 0)
Hey guys,
I get to FINALLY see the GI I originally scheduled with almost 8 weeks ago! I don't even remember that day! But it must have seemed like forever until tomorrow. Actually... it WAS FOREVER.
So tomorrow I am seeing Dr. Sohdi... who I hear nothing but good things about and I know he is one of the best in the area. I am worried for a few reasons:
1.) He is BIG on diet. He does seminars and speaking engagements on lowFODMOP and such. -- not that I am against diet. It's just been 9 months of me playing with diet and not getting relief... so I really don't want someone STILL not medicating me... and telling me to just try this diet/eliminate these foods, etc.
2.) okay... maybe I'm just scared in general. This last doctor I saw was middle eastern (which at first I was like heck yeah... i only want middle eastern doctors cuz they know whats up!!) but I really did have a hard time communicating with her. I didnt feel like she listened to me. And also was offended by my asking questions. Maybe that was just her. Or because she was a woman. Or I dont know... I just want to make sure we are understanding each other. I don't like being talked over and talked down to.
I am trying to be excited and hopeful... but honestly... I'm not.
I feel like I'm going to be sick forever. And doctors don't care.
And I'm just screwed.
9 months.... I've been sick 9 months next week... haven't taken a crap that was even semi-solid in 3/4 of a YEAR and all I'm on right now is a taper dose of Prednisone to start Entecort... because she messed up my Uceris prescription. And zoloft... which aint cutting it anymore in the depression department.
Why is it that I have UC... I'm in a UC flare... and I'm NOT on a UC drug?!
Luckily I also got a call from the Gastro Department at Froederts in Milwaukee. They are looking at my records, have me registered in their system, and will be calling me to schedule an appoint. So... that's pretty cool.
Symptoms as of today: PAIN. lots of pain. body aches. arthritic pains randomly in joints.
Guts... any food moving through hurts. Drinking water that is even slightly cold sends me running.
(How do I ask for pain meds? I luckily had enough friend's meds to hold me off till now... but vicodin from my doctor didn't do squat. percocet was okay. dilaudid 4mg total was PERFECT) (right now I am giving marijuana a try. It helps with the nausea... but not enough for the pain)
NAUSEA... this is new. Only the last 2 weeks.
Blood is back! Last 3 days. Blood in the bowl. Blood on the tp. Blood mucous globs on the tp.
Mucous as always. Diarrhea as always. And some new hemorrhoid friends.
Also my stools have been VERY dark. Like concerningly dark. Almost black. no matter what I eat. I ate mashed potatoes for almost every meal and my poop was black.
INCREDIBLY painful to come out. I swear I poop like in the movies... hanging on to the tub with one hand and the sink with the other... feet up on my little stool just SCREAMING.
Tenesmus is back. And horrendous.
But no smell of c-diff, and the pain feels different than c.diff.
The pain I feel now is the most intense I've felt. I literally just curl up either with a heating pad or ice packs. on my guts, on my back. cold rag on my head. ANYTHING I can do... and just hurt.
So I guess I'm not asking for advice as to what to say to this guy. I have my medical binder. I have all my listed medications and hospital trips and procedures and dates and times. And even my poop journal which I've been keeping for almost a whole month now (since c.diff dx.)
I have 9 months worth of crap to say to this guy.
I just wish someone could promise me that FINALLY someone is going to do something to help me.
I need reassurance that there IS a light at the end of this darn tunnel.
Cuz this tunnel got cold and dark and lonely a while ago... and it's hard to keep walking through it...