Well another day has come and gone. Wow. It has been a busy 24 hours. Even though I just told you tons of info, so much more has happened within the past 24 hours. I can’t believe it.
Well… I went for the exploratory surgery this morning. It was very long because they actually got to “see” what they kind of speculated and knew. Today’s surgery just confirmed everything that doctors really were thinking and it also gave the doctors a glimpse as to how bad things really are with me. They knew that it was bad, but they didn’t realize it was this bad.
What a long and exhausting day we had today. I am so glad that I have my doctors here at Cedar-Sinai Hospital in Los Angeles because they are simply the best. No other doctors have been able to discover and to do what they are able to do. Plus, their knowledge and bedside manners are simply untouchable. They have such superb knowledge about my condition and they treat me so well. I have never met doctors that are willing so much to take the extra mile to make sure things are done as good as can be or willing to make me as comfortable as possible. I have never met a nicer team of doctors and I must say that I had the best anesthesiologist today, doctors, and nurses. Everyone at Cedars-Sinai is just simply amazing.
Anyway… I went for the exploratory surgery and it actually was much longer than expected. When the doctors got inside, it took them about an hour just to get to my colon because my colon was so dilated. It took all the efforts of the nurses as well in order to get to the colon because it was a huge task. It definitely wasn’t easy.
After getting to the colon though the doctor saw how bad it really was inside. My intestines and rectum are extremely dilated, which is definitely not a good thing. However, it is actually saving my life right now because they found out that I do have a twist or an intussusception in the colon and the only reason I am able to live with it is because of how dilated the colon is. Most people would be dead by now. People that have twists in their colons or intussusception die because their intestines are literally being strangled and there is a huge obstruction. Yet, in my case, things are able to navigate around because of how dilated my intestines really are.
Yet, in the real world this dilation is not good at all. It is this dilation that is in fact killing me and is caused because my intestines are not functioning. The dilation is definitely not normal and even though it might temporarily be saving my life because of the intussusception and twist that is occurring, it is also killing me at the same time because it is putting extreme pressure on my other organs and shutting them down. The doctors saw on the x-rays how dilated my colon was, but when they got inside, it was a different story. That is why there is no peristalsis and they are completely filled up with fecal matter that is in the viscous stage. I can’t expel anything that is in the colon because of how dilated they are.
It is quite impressive how dilated my colon is in comparison to the rest of me. I am only weighing in the 60s and extremely tiny and yet, I have this huge dilated colon in me. The doctors have already put in “dibs” for when it comes out that they want to have it and test it to see exactly what happened to it. They want to run tests and do research on it to actually discover exactly what is wrong with it and everything. Everyone can’t wait for that colon to come out and to get a clear view of what it looks like. I have to say I am included in that number. I am also wondering what my colon looks like. With all that has been happening and all that they have been talking about, I am really wondering how big and dilated my colon actually is and what it really looks like. I guess we will soon find out though because the surgery to remove it will be very soon.
The doctor spoke to us about a lot of things today. We found out how risky this upcoming surgery really is. I knew it was risky and dangerous, but I didn’t quite realize how big it really was. The doctors are extremely worried because the colon has the most bacteria in the entire body. Therefore, the doctors are really worried that some of the bacteria are going to leak out during the operation or during the recovery process, which I definitely can’t afford to happen. I have absolutely no “fighting” power whatsoever. If that should happen, I probably will die. Therefore, the doctors said that they have to be super extra careful to not let any of the bacteria escape when they remove the colon and they have to make sure that there are no problems afterwards like leaks and such. That is one of the reasons why they are giving me a “bag” temporarily. They rather my body heal and calm down then possibly have another problem because I won’t be able to overcome it if that should happen.
The doctors are also worried about my weight. I don’t weigh a lot to begin with, as I only weigh in the 60s. However, when they remove the colon, I will of course also lose more weight. Not only will I lose the actual weight of the colon, which is about 4-5 pounds, but also I will not be able to hold fecal matter or anything else, which can also add a lot of weight onto a person. So if I am now only weighing in the 60s, the doctors are really wondering how little I truly will weigh when everything is out of me. I already don’t have any wiggle room and every ounce is crucial to me. I can’t afford to be any less, but they know it is going to happen.
In addition, when the colon comes out I will have to worry about dehydrating and even losing more weight. Since I won’t have a colon, I won’t have a place that will be able to “hold” food and absorb the food and water. Therefore, when I eat or drink, it will most likely go right through me. So from not living in the bathroom now because my intestines and GI system is paralyzed, I will have to go to the bathroom about 8-10 times a day. It really will be a night/day difference.
When I came out of surgery, they had a hard time warming my body temperature up due to the autonomic dysfunction. Even though the doctors tried everything in their powers to make me as comfortable as possible through the operation and tried their hardest not to stir up the autonomic dysfunction, it still happened. So they ended up having to wrap me up in blankets. However, since I am unable to really be touched either because of the extreme pain, they also had to keep giving me lots of pain medication such as Dilaudid to try to help control the astronomical amount of pain that I was soaring through my body.
So that my intestines don’t receive all the attention, my esophagus also is causing problems. During the exploratory surgery today, they also took a glance at my esophagus and they also ran some tests as well on it. It turns out that my esophagus isn’t functioning, as it should. We kind of knew that already, but now we have the hardcore evidence to prove it.
The doctors wanted to do this test yesterday, but they couldn’t insert the probes. I wouldn’t hold still and therefore, they decided that they would insert the probes when I was under anesthesia for the exploratory surgery. So I woke up with the painful thing coming out of my nose.
It turns out that my esophagus is not functioning, as it should be. Therefore, I am having difficulty swallowing anything, which includes water. In fact, anything besides water is basically impossible to go down. There is basically no peristalsis, which is the mechanism that the esophagus does to get the food/drinks down in the lower esophagus. In fact, there are even times where my esophagus does the reverse and it brings it back upward instead of continuing it towards my stomach.
Just as the colon is dilated, so is the esophagus. The esophagus is very lax and lost its peristalsis, and that is why I am having difficulty swallowing. I can barely have any liquids and even when the doctors gave me baby food, it showed that I couldn’t tolerate it. So, the doctors are really having their hands full on what to do with me because I am literally a huge mess. This is the reason why things don’t go down and also why I am aspirating.
The doctors said that they could do surgery to “tighten” things up in the esophagus, but it would mean that it would be even more difficult to eat, which would not be in my best interest at this time. Therefore, the doctors decided that since there is so much wrong with me at the current moment, we are just going to focus on one thing at a time so that we don’t “rock the boat” too much at one time. We don’t want to stir up things too much that things get too out of control that it ends up being a disaster.
So in the meantime, the doctors are just going to hope that it doesn’t worsen and we are going to ‘watch’ the esophagus to make sure things don’t worsen. The doctors told me that when I eat that I have to basically stand up because I need gravity to work on me in order to bring the food down since the esophagus isn’t working to produce peristalsis, which is the body’s way of bringing food down. In addition, I cannot eat or drink a lot because the sphincters are loose and the muscles are not strong enough to keep things down. I can only have slushies and liquids in the minimal amount. Since it is so important for me to eat and drink because of how much I weigh and also because they don’t want me to be dehydrated, they said I should be sipping and taking very small bites of food all throughout the day. In fact, they said that I can’t tolerate any large meals whatsoever and whatever I eat basically just sits in my esophagus. One shrimp is enough to fill up my entire esophagus because it can’t pass down. That is why when I did have that one shrimp, the doctors were able to remove it, as it was not digested or anything.
My dad and I also spoke to the doctor about getting the “bag,” which I am totally fearful of. I will have to get special belts so I won’t have to worry about my bag getting in the way of my life. In addition, the belts protect the colostomy bag, securely holding it up and against your body so there is no fear your pouch might get pulled off from your stoma appliance or snagged if it hangs down. The only problem is of course that they do of course cost money, which is something that we don’t have at the moment and an added expense to the pot. All I ever hear is “money, money, money!” I wonder what this world would be like if money didn’t exist. Why does everything have to cost money and revolve around it?
I am a total mess. I so tired of fighting and I am so tired of hearing bad news. Sometimes I wonder if it isn’t better just to give up already. But then I remember all the stuff that I overcame already and how much I really want to become that doctor, so I keep pushing on. I am not going to lie… this is definitely not easy. In fact, it is getting harder and harder each day. But knowing that I have the support of others I have to say really makes a HUGE difference.
Thank goodness that I have my dad with me by my side to hold my hand. I couldn’t have asked for anyone better than my dad. Not only is he my dad, but also he is my very best friend. He always makes the sun some out on those gloomy days. In fact, he held my hand throughout the entire procedure with the esophagus and was with me at my bedside before and after I went into the OR. After the long day of surgery, we got to spend the night watching a movie in the hotel room. It was so nice to just be able to watch a movie with him. We watched the new movie that just came out called EDGE OF TOMORROW. It was pretty good, but I expected it to be better than it was.
Well… tomorrow morning is one more test, which is a 5-hour test and then it is home for me for a bit. We are taking the red-eye home tomorrow night and I really can’t wait to get home. Of course we will only be home for a little while because we will have to return shortly to California for another exploratory surgery and pre-surgical testing. Then it will be time for the massive surgery to take place, which will be when they actually remove the entire colon. Its going to be one long trip home tomorrow because the nights are usually the worst times for me because that is when the pain is the absolute worst. However, hopefully it won’t be so bad and hopefully with the usage of medication and everything, the trip home won’t be so unbearable.
Well… that is about all that is right now. One more day in California. I really do love it here. If I could pick any place to live, it definitely would be here.
Thanks again for all your continued support. I can’t tell you enough how much it means to me. I definitely wouldn’t be here today without the support and encouragement of others. Please continue to pray and spread the word of my website so that I can receive the appropriate treatment that I need in order to live.