I was dx'd when I was 24 and was losing toilet bowls full of blood, and they said I had to wait 3 mos to see the GI, I was like I doubt I will be alive by then and they got me in the next day after explaining all the blood loss. They put me on sulfasalazine and rowasa enema's and within a couple of weeks I was doing much, much better! I would call your Doc and demand to get in there and get on some meds immediately, you have to be your own advocate.
After that for 7 years I was fine as long as I took my meds faithfully, when I did not, I would flare up again. I had a lot of denial. I went into a horrible flare this past Oct which was totally different from my first flare up, cramping, going 25+ times a day, not being able to hold a bm in. I was a zombie and could barely leave my house to go to work. I am in pred induced remission right now, and hope I can taper it.
During my horrible flare my sister at the begining was not really there for me, she was 'too busy'. I basically had a talk w/her and explained that I know you are busy and I know you don't know what it's like (now she has bowel problems) and said to her that a 5 minute phone call once a week to ask how I am doing would fit into her schedule and make me feel better. I had to tell her what I needed her to do and sometimes I need to tell my husband the same thing. They cannot give us the empathy we need, unless someone has gone through the exact same thing they dont know what you are going through and also, I played down my first flare, I don't really remember it too much, not like I remember the one I had in Oct. btw, I have always been there for my sister and it really did hurt me that in the begining she was not there for me, but we worked it all out and now she is very supportive.
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 30mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs. Do you have edema? If so, check your blood protien level!