Thank you guys so much for all the kind words and for taking the time to write me back. As for your questions...
1. My doc has suggested humira as a possible option but I wanted to try entocort first, as I have heard that humira had pretty bad side effects...and would of course like to try the least risky drug before the more risky ones, I thought that made more sense given I have never been on anything besides asacol and lialda and a short stint of prednisone (like 2 or 3 weeks). Now, I have called my doc, because I have been on this cocktail for a little under a month now and there really isn't any improvement...but unfortunately my doc is on vaca, but his partner did call me back and is wants to see me so I don't have to wait another week. I have an appt Thurs afternoon.
2. I live in the Southeast:) I cannot imagine living in NYC with this disease, you are so strong for being able to do that...I used to want to live in NY but when I was diagnosed, that kinda got put to the backseat, it's such a walking city and that would scare me..but good for you for braving through it. I really admire that and that gives me some hope...even though I don't really dream of living there anymore...I'd to think that I can go visit without having to worry too much --I have some good friends there:) Chronnie-Mel, I am also here to talk if you want to, it seems that you and I have a ton in common! I am 27..and was diagnosed at 22, so around the same time you were diagnosed.
Baaaaadgut, you lost almost all of your hair???? Omgosh...what caused it? Was it the steroids? Or just the disease? Yes, that is exactly how I feel, like getting up, doing my hair and putting on some makeup would make me just forget that I am not feeling well sometimes...but it's like now there is this reminder and my outside is showing more of what's happening or how I am feeling inside and it's freaking me out!!! This has NEVER happened before, which is what's making me think it's the medicines, because even at my sickest, which is sicker than I was now, I NEVER had hair thinning or loss. When I spoke to my doc, he said it was probably the prednisone that caused that....how long did it take to grow back??? I don't think mine is tooooooo obvious bc luckily it was thick to begin with but I notice it and I guess it would be noticeable if you looked really closely. I am really curious to know how long it takes to grow back....
Also, that is a really good idea to join a support group, I am going to really look into that. I have never done that before but I think it is a really good idea. I really like being able to go on here and talk to you guys about the challenges, ect that this poses bc you guys get it. We are all going through such similar things and I don't want to burden my friends with it...I mean they know I get sick, but if I was to tell a friend about my hair, I would be afraid they'd tell others and I just really don't want the stress and frankly I don't want the pity. It's like if they pity me, I might pity me...and I think I am just mourning it and trying to get through which is healthy but I don't need external reminders. You know?
As for a boyfriend, yeah, I had one that I lived with for a long time when I was first diagnosed and he was pretty good about everything, speeding to get me to a bathroom ect, but I think in a way he sorta scarred me because afterward he kinda made fun of me about it, but he was the kinda guy that was EXTREMELY inappropriate in many situations and made fun of everything ...but it also allowed me to be comfortable talking about going to the bathroom and all of that stuff because he talked about it with me all the time, about his own stuff...and he also used to sit in the bathroom for like an hour and made it his little sanctuary, so it made me feel better about doing the same when I really needed to. But, after we broke up, he made fun of me about the smell, ect...and I found out that he thought it was kinda gross at times. I mean I know we all do it, but maybe I am just a little more bashful than most about it...it's embarrassing...and I know I need to get over my anxiety about it...because HELLO, this disease will either keep you isolated if you don't or you have to live your life around it...and I do choose to live my life around it...it's just hard when it comes to certain situations, you know. So, what I did when I broke up with my live-in bf was get a long-distance bf, complete happenstance...but it did make it extremely difficult to go see him because of the overnight stuff and even in my apartment, I am bashful to go to the bathroom around him because of the noises and smells...it's not a huge apt...but it's also not small and there are 2 bathrooms, I know, I'm silly...but that's how much of an issue it can become for me. I am trying to get past it. Sorry for sounding off...
Also, I do carry the purse spray around also, but it doesn't do that much for how bad it can get or maybe that is just in my head. I mean everyone goes...why does ours stick so much though :( I am so sick of it always stinking...can we and when I say we, I mean me (can't speak for all of you), ever have a time where it doesn't smell like someone just died??? I miss that... a lot!
I really love that I have you guys to talk to about this..I appreciate so much. I guess my post sounded like I was really depressed and I guess to an extent I am depressed...this is a depressing thing that is going on and the effects of it are long-reaching. However, I am ok and I am out there fighting and trying to get the resources to get better and just try to live a normal life. I started taking probiotics today, my docs say don't it doesn't really help but I am going to do everything in my arsenal to try to combat this and get as healthy as I can be. For any of you taking probiotics, how much do you take per day. I have read that for Chohns, you need to take it multiple times per day...how do you guys do it? How many billion organisms do you take and how often?
Hope all of you are feeling good.. Thank you again :)
27 year old female diagnosed with UC at age 22; Chrohns 5/09
Asacol 3x's daily.
Entocort (3 per day)