Surgery consult tomorrow.
Feel like everything is so darn real. Freaking out a bit!
But excited... I think. Or scared. Or something.
2.5 hour drive, way too early in the morning. In a car by 730 am? eek. Bringing lots of diapers along!
Have had UC for almost a year. Diagnosed moderate pancolitis immediately.
After a couple months of lax treatment by a crap doctor (colorectal surgeon... not a GI. She should have referred me on when she got in over her head. But didn't.) things went downhill fast. October '13-Nov '13 is when the lbs started dropping. By Jan '14 I was 45lbs down, anemic, dehydrated and malnourished.
Hospitalized for a few days for fatigue and weakness. Admitted right after my first Remicade infusion.
3rd infusion has shown no improvements.
Uceris seems to have lessened the blood and accidents... but that's all. And can't be on steroids forever. Prednisone never worked for me. But I think the IV steroids did help. Or maybe it was the bowel rest and body rest from the hospital stay. Who knows.
As of right now; going 20 times a day, occasional accidents, urgency, tenesmus is CRAZY painful, stomach cramping is also very painful. Pain keeps increasing.
have found no "safe" foods. But keep low residue to try to help stop the bleeding and pain as food goes through and as food is expelled.
I've tried all that I have time for. Severe pancolitis... biologics not working.
Not much time left to try other things.
Was hoping for Vedo/Entyvio... but now I just want this diseased beast out of me!
Thanks for listening to me ramble there for a bit. Realized this isnt the UC board so most of you don't know my story.
Have a good group of close online UCers I talk with. Only one of them is 100% supportive of whatever I choose. Another that seems okay with it. 2 that don't understand.
They've all had UC longer than me.
It's hard to explain... my severe... is severe. My quality of life is almost zero. If it wasn't for pain meds... I'd be done.
I printed off a list of things to ask. Also reading through posts on here. And coming up with my own questions. Any suggestions of BIG questions you wish you had asked at your consult?!
Also: I had a partial colonoscopy when diagnosed in July of 2013. Camera was stopped by a stricture half way through transverse. Barium Enema X-rays showed inflammation throughout colon. Should I have another colonoscopy done before procedure even if the surgeon doesnt think so?
My current GI doesnt see the point. But I want to know.
He says I'll know once they look at it when it's out of my body....
THANK YOU ALL!
Katie - 28 - 7-11-13 - pancolitis.
Flaring: tenesmus w/ mucous and blood. Diarrhea w some urgency.
Remicade - 3 doses in
Uceris - 9mg
Xanax - 0.5 - as needed
Past meds: Vancomycin, Balsalazide, Lialda, Prednisone, zoloft