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

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

The last few days have been a whirlwind of emotions to say the very least. For those who don’t know, my doctors went ahead and recommended I undergo a total colectomy in which my entire colon and rectum is taken out. Although this news took, and continues to take my breath away, I am strongly capable of wrapping my head around it with a positive attitude.  To some, this may seem like a very drastic and sudden procedure, but fooled you, because this surgery has been the very thing I have avoided since I was diagnosed 6 years ago. Its hard to see the fighting that goes on behind a closed body’s doors, a beautiful brides smile, a dog lovers face when it gets two sloppy kisses everyday. But the fight is there, consistently. I can say with full confidence to you all that this is not something I have taken lightly by any means and I have to the best of my and my doctors ability done everything medicine knows how to do for someone like me with little success. Am I scared? Terrified. But I am able to accept it for what it is and look at this opportunity to better my life. I hope you all are able to do the same. Once my body gets this extra little jump start it needs I fully intend to help it along in any holistic way I can, by continuing to live a healthy lifestyle and regiment.

This weekend was very stressful as the team of doctors/nurses who had been giving me primary care had left for the long weekend and my case was essentially handed off to two teams of doctors; the surgeons and the GI team, both of who were pretty low on the totem pole of medicine and now comfortable answering many of my million questions. I also sat here with the uncertainty of not knowing when the surgery was going to take place. Ive been in the hospital 10 out of the last 14 days and the waiting and anticipation has been one of the most difficult parts of being here. I was terrified my surgeon was going to walk in and basically say ok lets schedule it for whenever, next week, week after… The plan was always that I would go home between surgery and the admittance, however, as the days and pain progress it was slowly becoming apparent that was less likely to happen.  Monday afternoon the consulting surgeon who has been covering my case walked in and casually said, “he can fit you Wednesday evening sometime”. Coming from the biggest question asker and planner I know I was very stressed out by this. I got the news by myself and didn’t really know where to go from there. I didn’t have much of a choice about the days unless I wanted to wait until deep into next week. I certainly want to get it done quickly and I think this was ultimately a perfect result, but it was fast. Plans needed to be made, flights needed to be booked, life needed to be “nested”. So here we are. Pre-OP day. My mom is on her way here, River has been fortunate enough to get the time off work, and other plane tickets are all booked or on standby. Support system to say the least, all ready to be here at the drop of a hat for me. I remember the post OP of my surgery and it was HARD and things are a lot different now, especially living alone in this city. Today will be filled with getting clearances from all departments involved, making sure I can physically undergo a surgery of this magnitude, just paperwork fundamentals. There are also some concerning numbers like my potassium and blood counts that we need to raise before surgery. I will be getting IV potassium, iron, and my first blood infusion today to help my body do what it just isn’t able to do by itself anymore. It will also be a emotional day for me. As minuscule as It sounds to someone without crohn’s, after today I will never poop into a toilet again. My hours of pain spent curled on my bathroom floor are over. My dogs will never rest their heads against my flat soft tummy. I wont be able to wear some of my clothes ever again. All tiny things compared to what I will be gaining, but hard to think about none the less.

I am ready for this. Pending all gets cleared today, the surgery will be at some point Wednesday evening. It is a 7-8 hour long surgery and I will wake up in the PACU to River and my mom. I will have them update as often as they can and see fit, but please feel free to direct message anyone in my family for updates or just to show them some support as I know how hard it will be for them when I take my quick “nap”. I also cannot begin to thank all of the nurses and doctors who have worked around the clock to help me attempt to find this new quality of life. People like this exist in the world for such an important reason and I hope none of you never needs to know what its like to be in the hospital for so long, but the team becomes one big family and so from the bottom of my heart to theirs; Thank you…

I cant wait to share the next blog post with you. Post OP, new life. Squeeze those you love extra hard for me today.

My dad left me on this quote the other day, and it seems to have stuck

“reality is harsh. It can be cruel and ugly. Yet no matter how we grieve our environment and circumstances nothing will change. What is important is not to be defeated, to forge ahead bravely. If we do this, a path will open before us”

-Daisaku Ikeda

See you on the other side, C