Life takes guts.

On September 21st my doctor officially diagnosed me with inflammatory bowel disease - ulcerative colitis. September 20th was my 3 month "anniversary" of the start of the disease symptoms. We've suspected UC for a few weeks now, but were unable to diagnose with the infection I had on top of it since the infection caused contradictions in the inflammation patterns. Even though it was suspected, having an official diagnosis hit me pretty hard. I got in the car and allowed myself a few minutes to grieve for the loss the "normal me", or as cliché as it sounds, the "old me". This is my new normal and I'm trying to go at it with a positive mindset, but that's easier said than done. I don't know what the future holds and that's terrifying to me ... 23% to 45% of patients with ulcerative colitis end up eventually requiring surgery. The medication options don't always work for everyone, and if they do work for a while sometimes your body stops reacting to them and they become ineffective. I was put on several different medications today (Prednisone... aka Satan's Tic-Tacs as I've seen people so lovingly call it) to start working towards remission. I've been very outspoken about my medical battles on my personal Facebook page, and I plan to continue to stay that way for a number of reasons... to inform, draw awareness... And because you never know who you're helping.

In these last 3 months alone I've spent a total of 6 days in the hospital as an in-patient while battling this disease, as well as for the nasty bug clostridium difficile colitis that was complicating it. I've been in the ER 7 times for labs, IV fluids, abdominal pain that was so bad it was causing uncontrollable vomiting, and yes - blood loss. I've lost 30 lbs from the onset of my disease symptoms, unintentionally. I was hospitalized for being malnourished, badly anemic (due to iron deficiency and blood loss), and low hemoglobin. I've had 2 blood transfusions and 4 iron transfusions. I received 4 bags of potassium chloride through an IV, and if you don't know how bad that hurts then consider yourself lucky! You don't know searing pain until they give you potassium via IV and your arm feels like it is literally on fire. I've had 3 CT scans with contrast and countless x-rays. I went through a dreaded colonoscopy and will have another one here in the near future... And believe me, the "prep" is the worst part of it... You have to drink 64 fl oz of laxative in a short period of time, and just pray and pray that you can keep it down long enough for it to work. Yuck. I was put on a clear fluid diet for a few days to give my body a rest. I have to go monthly now to have blood work done and have my levels checked out, I also have to be very careful to not be around sick people because my immune system is suppressed because of the medication that I am on.

There is nothing appealing about my disease. It's not glamorous, it's not fun. I don't get to "rest" while I am in the hospital, it isn't a vacation or a break. My body has waged a war upon itself and it's an all out fight to get better - to get to remission. I honestly didn't realize how bad off I was until I woke up from my colonoscopy and my doctor was standing there apologizing and saying they were going to have to admit me to the hospital, he told me that somewhere along the line someone had "really dropped the ball" because of how malnourished and how low my blood levels were. I was exhausted, yes, and I knew I wasn't getting enough nutrition because I spent half of my day (15 to 20 times a day) sick in the bathroom and unable to eat.

So this is my story as of now, and I'll continue with it here as more comes of it. I have an appointment with my gastroenterologist this coming Friday (9/30) and another follow up the week after with my surgeon.