I can hardly believe it has been two weeks since my surgery. My life has changed in so many more ways than I could have ever imagined. There are good days and bad days, but overall I just have had to step back and realize that this is a journey and it is not just going to get better overnight. Life post surgery was and remains to be the hardest thing I have ever done. In my head I think I had a misconception that my recovery time for the proctocolectomy would be similar to my first small bowl resection in May 2012. I was in the hospital for 10 days for that surgery but then basically went home and was able to just relax and slowly start building myself back up everyday. This time around I didn't realize I would have to get worse, much worse, before I would begin to see the smallest sign of an improvement. The discouraging part of this whole process is that is it day-to-day, hour-to-hour, and minute-to-minute. I can have a great day, but then take two steps backwards by having an awful night. I need to learn to accept that my body just had a major abdominal surgery and it will take the full 8 weeks to recover and get my life back to not only where it was, but to a place that is so much better.    One of the biggest misconceptions I had about this surgery is that it would just affect my abdomen. So many other parts of my body seem to have been affected from the trauma of the surgery from my bladder, my back, the side effects of exposed nerves from weight loss, the muscle tension from lying in bed for weeks…every part of my body basically hurts. The first few days after the surgery were pretty much a blur. I was having an extremely difficult time regulating pain meds because I require higher doses of narcotics than most to feel anything at all, which is weird because I never take them. My doctor tried explaining that some crohns patients have that issue because they are so used to living in a constant pain. I had the pain pump for the first 3 days post surgery in which I was pressing it every 8 minutes to get my dose of IV dilaudid. Eventually they against my better judgment, switched me to the oral pain meds in order to get prepare to go home. In the hospital post surgery the major pain pump is necessary and much needed, however, when I started weaning myself off of them at home I experienced a major drug withdrawal in which I became super dizzy and disorientated, got cold sweats, extreme nausea and vomiting, I couldn't eat and just felt overall terrible. I have never experienced withdrawal before, but for those who have...my hats off to you because its no joke and it kicked my skinny ass for several days and I was beyond miserable. Once that wore off I was better able to better understand what my body is feeling regarding the surgery itself. During this time I was also experiencing what we would later find out was a partial blockage in my intestine. This could have been from something I ate (which wasn’t very much) or simply from all the inflammation in my intestines. The symptoms for the blockage were very similar to that of withdrawal; vomiting, nausea, loss of appetite, but also severe abdominal pains. For the first few days to a week I was home I was hardly able to eat anything. I would literally have one of two bites of applesauce or soup a day which I would often be so nauseas I would throw up anyways. This was obviously very concerning because weight was just falling off by the minute and I didn’t even have enough energy to pick my head off my pillow. My weight has fluctuated so much in the past two months. When I went into the hospital originally I was at a pretty low mid-flare weight but then I quickly gained steroid weight from the high doses of IV prednisone. I went from 106 to around 125 right before surgery. After the surgery I have gotten down to as low as 88 pounds. Some of that weight is the steroid water weight, some of it is from the physical parts of my body that they removed, and the rest is muscle and weight that I have lost post-surgery. Its terrifying to think about and to look in a mirror and see how small I really am. None of my clothes fit me anymore, Alli had to venture around NYC to find me a few pairs of jeans to get me through the next month or so until I can hopefully put some of my weight back on.

I have such a hard time believing I was in the hospital for almost the last 1/3 of summer. I began to feel like it was my second home and my nurses and doctors my second families. If you gain nothing from this blog, learn this. Treat your nurses, doctors, blood draw people, and anyone else who cares for you with respect. They have an impossible job but having a good team makes the patients quality of life so much easier. The nicer you are to them, the friendlier and more helpful they will be to you in return. I also cannot begin to express how grateful I am for the AMAZING support system I have behind me through this entire journey. This really has been a team battle and so many people have helped me in so many different ways.

Two weeks post surgery I’m slowly starting to adjust to how big of a life change this actually was. I feel like I was so strong before the surgery because I had to be, there was no other choice. If I would have gone into this process sad or scared I wouldn’t have made it. I think that is just who I am and I have to have be strong and put on a smile, however, I do think that I need to find a way to mourn what I lost, which was significant. There are so many “lasts” that I never got to experience. Farting for example…I will never fart again. Some of you may laugh and wish you would never fart again, but once someone physically takes it away from you, you’ll want it back, trust me. Showering. I am able to shower, obviously, but I either have to do it with my bag on or have my stoma exposed. I am much more gingerly about it, im scared to use hot water or get soap on it etc…I know I will eventually get used to it, but I wish I could take one more good shower. I also just have to adjust to the way my new body looks. It wont hit me yet, but wearing my first bathing suit will surly be difficult. I am not ashamed of my bag at all, its now a part of me and always will be. I hope to bring awareness to ostomys because I am not going to cover it up, but it will be an adjustment for sure, talk about an awkward tanline…

            Overall, at this point, everyday seems to be a little better than the day before. One of the major problems I was having during the first week was my body was so uncomfortable I could hardly move. In the past few days I have been able to unclench my abdomen which has helped relax my body some. Sleeping remains to be one of my biggest problems. Basically I cannot find a comfortable position to sleep in. Its very hard to explain, but when I lay on my sides I feel my insides shifting…they feel empty and it knocks my breathe out. I can imagine I will eventually get used to this feeling, but for now its very odd. I would say im currently getting around 2-4 hours of sleep a night but often for only 45 minutes to an hour at a time. This obviously is causing me exhaustion during the day which doesn’t help with recovery…

            Tomorrow I meet with my surgeon to see how things are progressing. At this point I expect a good report and a clean bill of health from a surgical point of view. The recovery is long and I know that I have a long way to go, but the fact that I see small baby step improvements everyday is a good sign and very promising.

            Until next time, C