The past month has been the biggest whirlwind, and I suddenly open my eyes and cannot believe I missed half of the month of August and half of the month of September in the hospital. When all was said and done I spent 19 days admitted to the hospital both pre and post surgery. I feel like I was gone for ages, but on the other hand it feels like I just left. I got home and was pissed there were no groceries in the fridge because I had just gone shopping…whoops that was 2 weeks ago. Anyways, the hospital care is something I want to address in a separate post because, after being there so long, I have quite a bit to say. 

After about a week and a half of non-letting up pain and worsening crohns symptoms despite heavy IV doses of Steroids and several procedures, we decided to proceed with the total proctocolectomy on September 3 in the early afternoon. I was told about the surgery on Monday and was having mixed feelings about the speed at which we were moving. Half of me very much wanted to just get it over with and start my new life. The other half was slightly more reserved. Although I had wrapped my head around the idea that this would permanently be my new life, it was a lot to deal with and maybe I needed a couple of days to process what everything meant. In the end, we went with the first available time with the surgery and looking back I know I made the best possible decision.

*This paragraph contains medical information about the surgery, skip if you get uncomfortable easily

Prior to the surgery, the team of GI doctors and surgeons all came into my room to present me with two different options as to how they could approach the surgery.  The original plan was to remove the entire colon as well as the rectum, which both appeared to be very full of disease. They would then stitch shut my anal passage as well and any and all stool would be passed through the stoma on my abdominal wall and into my colostomy bag

*for those of you who don’t know, a stoma is the opening of tissue created outside of the body. In my case it is a loop of my small intestine, which was pulled through my abdomen.

This procedure was more conservative. If you take it all out, you have much less risk of it coming back. They then presented me with the second option of taking out the entire colon and giving me a “temporary” bag in which they would leave my rectum and anus but give them a break essentially by attaching my small intestines to a stoma and a bag. By doing this, the goal would have been to then continue to use medicine therapy to 1.) give the colon a rest 2.) alleviate the disease in these areas 3.) eventually plan to reconnect the small intestine to the rectum and get rid of the bag.

Each of these surgeries have major ups and downs. The major downfall to the more drastic option of taking it all is fertility. When I signed up for this surgery I essentially signed away my changes to have my own baby naturally. It is physically possible…but a very uphill battle full of all kinds of struggles. Anyone who knows me can only begin to imagine how difficult of a decision this became for me. Having babies has been my dream since I was old enough to know what a baby was. Having a baby is what I was made to do, and I was getting pretty close to making it a reality. However, the surgery was supposed to be a way for me to live a “normal” life again, something I haven’t experienced in as long as I can remember.

The downside to the less aggressive surgery is simply that it is not as effective in treating the problem. For many people it all out doesn’t work and you end up performing the same surgery anyways, it just takes more time, more pain, and more risks.

So the eve before the surgery River and I deeply discussed our options and decided that we wanted to give me back a full sense of life and do the total proctocolectomy. I need to be healthy before I am able to focus my entire life on another small human being, and frankly I deserve it. We will find a way to make a family, and when we do, we will all be healthy and happy.

The day of the surgery was a total blur. The exhaustion and reality had officially kicked in, and I couldn’t even keep my eyes open all day. They were originally supposed to come get me at 1, but didn’t come until around 3:30. Once they finally came it was a super quick and sad goodbye to river and my mom (and everyone else on my phone list) and they wheeled me down to the OR.

As someone who is obsessed with all the doctor shows like Greys anatomy, I thought it was the coolest thing to be in the ER and act like I knew what everything was. And yes, the doctors are all pretty stinking gorgeous. I don’t remember much from the ER, they started attaching me to all the equipment, I told them “it was a beautiful day to save lives” and the next thing I know they are putting me to sleep.

I woke up in the PACU in absolutely horrible pain. I have had surgery before, but this was something so deep and out of this world I cannot describe it. Every time I have a procedure done I wake up crying from the anesthesia, everytime. This time I just kept complaining about how much pain I was in and there was a pain specialist at my side for a good hour trying to control it. They say just because of the pain associated with the disease, crohns patients have a very high pain tolerance and have a difficult time getting pain managed. For a hundred pound girl they said they were giving me pain medication for a 400 male and it was still not making a difference.  My immediate reaction was to keep grabbing at my stomach to see if the bag was actually there, and it was. After about an hour and a half my mom and River were able to come see me and I just kept saying “Im so happy to see you, I am SO HAPPY”. Not my usual post anesthesia self.

The doctors had talked to them after the surgery and when they told me what they said I was once again shocked. Good news and bad news. The surgeon informed them that I had the worse colon he had ever seen and he wasn’t sure how I was physically functioning on a day to day basis. The good news was, it was gone, and hopefully this surgery will be successful, do its job, and last for years. All in all the actually surgery was flawless and they sent me up to my room to begin the recovery process.

At this point, the “hardest” part was over and I now just needed to begin to learn to live this entirely new life I was faced with.  My entire family and network of friends were the only reason I was able to make it to this point with a level head and a smile on my face. Those in New York were able to be here for my physically and emotionally, but just as important were those at home who were just as concerned. The amount of love I have received from all of this from family and strangers alike was a life changing thing and it will never be forgotten. Just wanted to update about the physical surgery, look for more in the upcoming days about stories, progress, setbacks, and how im adjusting to this new life.

Until next time, C