Gail - My mom is a SAINT! She has been there through thick and thin. She knew before I did that something was just not right. I have been so doped up on pain meds when the ER that I tend to just brush it off, but she is always adamant that something be done. I work for my parents, so I sometimes work from home or come in late or leave early. I'm really behind at work, but I get the necessities done. My mom literally counts my bathroom breaks because if not, I could care less. I have that constipation feeling and I end up going and nothing much comes out because it's just my rectum spasming. No fun. But, she's not obessive about my disease, she simply just has the mother's intuition when I'm not acting right. Then I usually break down and tell her what's up. She has supported me through the loss of my daughter, her granddaughter...was my matron of honor at my wedding. Was there with me through a scary fluke retinal detachment where I almost lost all vision in my left eye (and mind you, she just had her wisdom teeth pulled!). And, she drives me over to St. Louis once a month, or more often if I'm having problems. She puts herself to the side to make sure I have the strength for my little girl. And, at whim, she has picked my daughter up and cared for her when I was too weak. That breaks my heart, but to know her grandmother is always there when her daddy was at work and I was terribly ill...it makes it seem ok!
Sassy - Crohn's colitis is just Crohn's located in the colon. So, it seems like it's both UC & CD, but it's pretty much just Crohn's, but primarily located in the colon. I've been told it's the most painful and hardest to control. And, I get that about the docs in the ER. But, I've educated myself enough that by the time I feel the need to get to the ER...well, the doctors sometimes are shocked about what all I know because they just have "generalized" info on the disease and not the nitty-gritty (like antibiotics causing flares, your rectum swells so bad it makes you feel constipated, etc,etc.) One doc told me that he wished he had a med student with him when he was examining me because they could of learned a lot from my case, as I was definitely "unique" Go figure eh? But, I do hide the pain for fear of not getting done what I need to. But, the last year I have really been honest and everyone has noticed it because of all my "little" errors I make here and there. They are all understanding and have been trying to do whatever they can to relieve some stress from my plate. I have scaled back tremendously and many people keep up with my blog to see how I am doing as well as my daughter (and my hubby too) because my daughter was a preemie and lost her twin sister at birth...longer story. Anyway, the first ER visit after I was dx...the doctor swore I didn't have anything wrong. Gave me a rectal exam with her pinky and my husband and mom had to hold me down as I was literally screaming in pain. I kept trying to tell her there was this lump that was so painful next to my vagina. 24 hours later I returned to the ER and the NEW ER doc (whom I gently reminded that if they came me a rectal exam, I was going to give them one in return) found a 2x2 abscess just outside my vagina. They lanced it and then tried to d/c me when I couldn't get out of the stirrups and after a few rounds of morphine. They even packed it. I seriously hate the ER, and now when I get there, I almost always request they call the GI on call. And, my new GI told me that if they try to start steroids to request a transfer immediately. The ER is just not meant to deal with our situations, but yet our situations ARE urgent. Ya know?
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08 - Infusion, every 4 weeks.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 13 months old