well now here we are...

the hard part about this "disease" (i'm not sure what to call it disease, condition, whatever) is that no body knows what causes it, why the flare ups come up or what to do to prevent it. I have done about all that i can think of, of course there is always probably more, but i changed my diet completely with the help of my dad and my bf. we only shop at whole foods or places like that, eat as organic as possible and cut out 99% of processed foods and sugars, don't drink, don't smoke, you know all of that. Didn't work, somewhere in mid september my body fell off that cliff again.



I started feeling symptoms again, more frequent bms, looser, bloodier, waking up at night to use the bathroom, all those old familiar bodily functions were making their presence known and then some. I started losing massive amounts of hair, i mean i know we women lose sometimes a lot of hair in the shower but i can swear i've lost half a head of hair. I grew pale again and the dark circles returned. The dr was pretty awesome and saw me during lunch and before the clinic actually opened. He gave me another colonoscopy (joy! I'll never be able to smell chicken broth again lol) and basically said its time to seriously consider surgery. H e gave me names of the surgeon and a dr who could provide a good second opinion.



I am lucky b/c I have an amazing support system. my mother and bf were at every single dr visit asking questions and it has just been so great to feel that, not to mention other loved ones who were there when i needed them. Always make sure you have a good support system, no matter who you are but especially if you have some sort of chronic anything, you can't do it alone. Even if you need to manufacture it for yourself. there are plenty of support groups that meet and if you don't want to you don't have to leave the comfort of your own house. CCFA has a great on-line community that i have found comfort in many times. Whatever you do make sure you have someone to talk to! especially with something like this its hard for people to understand b/c you look basically healthy to the rest of the world and its hard to talk about a lot of the things that we experience, but it is so important!



ANYWAY....so we talked to a 2nd and 3rd opinion. my goal was not to lose my organ, i wanted to be well but surgery just seemed so extreme to me. The other drs agreed, sort of. they thought that it was appropriate to be thinking about surgery but that there were still other options. They both thought i should try a boost of steriods and Imuran. It eased my mind but I was not looking forward to more steriods. then we saw the surgeon and that really put my mind at ease. 99% of my fears were calmed about the option of undergoing surgery.

Since about the 1st of this month i had been fluctuating between a normal temperature and anywhere between 103 and 105. I knew i would be seeing my regular gi dr in about a week so i figured i'll just wait and we'll talk to him then. But it just kept getting worse. I was taking percocet and dulodid just to get throught the day, not necesarily b/c of pain, though it was def there, but b/c those medications cause constipation and that was the only thing that kept me off the toilet literally every 20 minutes. Finally on the 11th my bf took me to the er b/c he was so nervous about my fever. I figured they'd get my fever down and I would go home and sleep it off. well that was 8 days ago and I haven't left the hospital yet. and tomorrow I will be recieving a colectomy. they will remove my entire colon and leave me with the J pouch and a temporary ileostomy bag. I am not too excited about the bag, BUT i am exstatic about the soon to be reality of being healthy again. My colon has literally been sucking the life out of me for the last year plus and i'm ready to get that life back!