Wednesday, October 26, 2011

learning new things...

I went to see my gastroenterologist last Wednesday. I don't believe I have ever had an appointment fall on such a better date or time. I had started experiencing some abdominal pain especially after I ate and it continued to intensify Tuesday throughout the night. By Wednesday morning I was only able to eat one piece of toast without the pain becoming comparable to some of the surgical pain I had recently experienced in the hospital. Something felt off, I should be moving forward with my diet not backwards.

My doctor did notice some distention of my stomach but there was no hardness and I was still able to go to the bathroom so no blockages! This was one of my main concerns. As he felt around he said that the distention was most likely my small intestines being pushed out. All along I've thought that I just had a bit of a stomach. I use to work out, run and do all of the types of crunches to get rid of this "pooch" that I had. I now know why it never left; it was an organ. (All of this working out was several months after my diagnosis. I was living in a different world and life style then.) I explained to him that after I ate, the pain intensified. He decided to call my surgeon and they both agreed on doing an x-ray abdominal series just to make sure everything was flowing correctly.

My next question for my doctor was about laying down at night and the sensation I experienced; what was that? Were my intestines really moving? He said that before my colon was in place and that kept my small intestines from moving along with everything else being impacted. Now with the colon being gone, there was room for things to move around along with the food that I consume throughout the day. One thing that was comforting and relieving to know was that I know longer have to deal with my IBS anymore because I no longer have a colon. No colon = no IBS! I got the same answer from both my GI and my surgeon; stay away from fruits and vegetables in order to avoid blockages. I am allowed to eat peanut butter, pasta and cheese though. As for the whole constipation issue, I was confused as a whole. If I had constipation before my colon stopped working and when my colon stopped working I had issues of colonic inertia (where the nerves and muscles of the colon do not work normally so nothing is able to be moved throughout the colon as it should). Since I no longer have a colon, am I constipated? That question was one of those "I don't know questions" because I have a delayed small intestine so we don't know how delayed my small intestine is/will become over time so we don't know if I'm constipated because I'm not regulated yet. Who knows?! All I know is I am so glad I am done with the colonic inertia thing for good. It makes constipation seem like a walk in the park.

I did talk about blockages and the NG tube with my doctor. We laughed about it because I honestly didn't know what I was signing up for when I agreed to have the tube inserted in my nose but I honestly didn't care at that point. He did say that if I ever had a surgery that made my organs become like they were in the hospital whether because of anesthesia or surgery (that was my understanding; anesthesia puts our bodies to sleep) I could get another blockage and get to experience all of that lovely experience again. Oh what FUN! I'm really not worried after all, I'll beg to have that NG tube inserted while I'm still out of it so the worst would be over ;) . After all, I've got bigger things to worry with. I was thinking one day, I will never have another NG tube in my life and then I realized I said that about the anorectal manometry; I had another performed manometry within several months of saying the very same thing. GP has some uncomfortable procedures but I suppose they just make you stronger as a person.

I had my x-ray series the following morning and it was a little deja vuish (if that even counts as a word). I walked right past the bay where they hold the inpatient beds who are waiting for x-rays and then if I didn't walk right into the same room and have the same x-rays when I was in the hospital. Oh my gosh!! Number one; there is no way I could have done those x-rays that day; I'm sure of it now. Number two; seeing all of those people who were patients (in house) made me remember how sick I was and made me thankful for my recovery but feel bad because I know what it is like to lay there and feel like you're going to die because you feel so bad. Crazy feeling to experience. Anyway, I got my results and there were no blockages and the pain that I had been experiencing was from surgical air. Another one of those GP/delayed motility perks i suppose.

So along with all of the informative information I've learned as well as bodily adjustments I've been experiencing I went to the dentist yesterday. I dread the dentist; between the noise, scraping of teeth, flossing and gagging, I'd rather get a pap smear or several Heparin shots and I just had around 36 of them. I do NOT like it and I take care of my teeth. I'm a frequent brusher, between five to seven times a day and I do the rinses as well. So I go to the dentist and I cringe my way through the scraping and flossing (I hate flossing; give me gore and blood any day just not flossing) and we get to the mouth trays with the foam stuff and that suction thing. This gets me every time. I start to gag and I am telling myself to suck it up; the NG tube was much worse, it's just for one minute. Finally the dentist comes in and I ask him to check my teeth for any damage the magnesium citrate could have caused. Yes of course it has, I should have known! One hundred and forty plus bottles have caused my teeth to become cloudy and I always brushed immediately after. He asked why I was drinking that and at that quantity and went on to ask about my diet. I found out that liquid diets and the mouth (teeth, gums, jaws) don't mix well over time. Since my diet is more liquids than solids I will not be chewing as much so there poses the issue. My mouth (teeth, gums, jaws) will not be used as much so the body will stop sending nutrients to it (like I have much to contribute) and over time things will start to go down hill. As for the liquids, liquids don't require chewing so cavities become a problem because chewing helps this process. I need to start chewing sugarless gum, rinse away the liquids when I am out in public away from my toothbrush and personally I am going to try and watch how many sugary drinks I take in. I came out with one cavity.... stubborn GP. I would have never in my wildest dreams though GP would effect my oral care but obviously it does.

I have learned so much within the past week and that's not including what's going on with me at home with my GP. It is a constant thing trying to keep up right now. For instance, I ate a few Cheez-Its yesterday and it turned my stomach upside down. Those have always been a safe food. It is all about trail and error again and learning what works and what doesn't work. I feel like I have been newly diagnosed again. I am still happy with my decision though about the surgery. I think about it all the time because my body is constantly reminding me and I wouldn't go back to the old mag citrate way of life for nothing!

Tuesday, October 18, 2011

learning a new normal...

It has been one month today since I had my surgery. Where has the time gone? It is been such an overwhelming and yet odd experience. I was talking to Jacob one night and I told him that I had experienced so many changes to my body that I didn't feel comfortable with it. I know that sounds extremely strange but I went into this surgery expecting to feel this way when it was all said and done. For example I had the whole magnesium citrate routine down pat; I know what to expect and when to expect it. I could go to bed and rest easy knowing that nothing unexpected would happen. However with the surgery, everything is new and it has thrown my body all out of sorts.

At night when I lay down, I feel my whole abdominal area shift and everything moves which makes me nauseous. I like to sleep on my side and it took me several weeks to be able to do that because of my incisions pulling. When I would lay flat they would pull but not nearly as much as they did when I laid on my side. When I go to bed at night I love to listen to my ipod. Music makes my world go round. Until two nights ago, I just wasn't comfortable enough to do that. It sounds crazy but I just wasn't ready. I have finally been able to make it through the night several times without waking up which has been WONDERFUL!! I'm usually up several times during the night which gets old and just makes for a long night.

My diet is generally the same; mashed potatoes and bread. I have branched out and added a few things for variety and flavor, I was getting desperate. I've started eating chips which my surgeon approved as well as baked tator tots and sugar cookies. I have attempted to eat french fries and they seemed to be okay but I am proceeding with caution because of the grease. Friday I started craving Dr. Pepper. I had been doing so well but I gave in; what could a small half glass hurt? I slowly drank it and it didn't bother me until around 1:30am. Oh my goodness the intestinal pain! I have decided to give up Dr. Pepper, I am officially finished. It was not worth that pain.

Yesterday I started having abdominal pain followed by some nausea. It lasted throughout the yesterday and into today. I'm not sure if I have been eating too much or what. I decided to go to a more liquid diet to give my stomach some relief. I ate some potatoes for lunch today and sure enough the pain and discomfort intensified. Luckily I go to see my GI doctor tomorrow.

I am becoming much more comfortable with myself. I have learned to take it easy and slow down. I am having to learn what works and what doesn't work with my GI tract. This is going to be a long process that will just take time.

Saturday, October 8, 2011

nine nights, ten days...

After many months of waiting September 20th, the day that I was to have my colon removed had finally arrived. My surgery was scheduled for 11:30 that morning and we were to be at the hospital that morning at 9:30 to begin the admitting process. I woke up feeling no feelings of anxiety or worry. I had had months to prepare for this. After all, this whole process had been seventeen months in the making so my body was tired and I had had plenty of time to work through the emotions.

We arrived at the hospital, Jacob and I being the first to arrive and checked in. Whenever we have any type of surgical procedure, if I can have any type of control of where we sit, I pick the very back corner of the waiting room where we sat when my dad had his colon cancer surgery. It may be strange but it just feels comfortable and I always know where everyone is at. I figured that I would be waiting half the day before I was called back due to surgical delays since I had a later appointment but I truly didn’t wait that long. Within an hour and a half I was in the surgical bay in my gown and being hooked up to an I.V. I had expressed my concerns to my GI doctor, surgeon and anesthesiologist that I did not want an I.V. in my foot or neck like the last time. This time I was very lucky; my nurse was experienced enough to know by my skin type, hair and freckles that I would be a hard stick so she knew where to go. It took one stick and my I.V. was good to go! My family was allowed to come back and spend some time with me. Personally it is always easier to be the patient than to watch your loved ones being the one on the gurney. Before I knew it, my surgeon came by and ran over a few last details as well as the anesthesiologist. We said our goodbyes and my family left. They ask me a few last questions, administered some medication and rolled me away to the operating room. I was wide awake when I got there. They let me move myself onto the operating table. I even talked to them for a bit. They started hooking me up to some of the machines. Me, being a curious person medically was checking everything out. There was so much to take in. They placed the mask over my face and told me to start taking deep breaths and that is the last thing I remember.

My surgery lasted for around four and a half hours and I was in recovery for around two and a half hours. When I woke up in my room, the pain was horrible. I remember to the best of my knowledge moving onto my bed and realizing “oh my gosh, I just had surgery and no one told me it would hurt this bad.” I told the nurses how bad it hurt in a not so nice way. They had me on a PCP morphine pump which allowed me to push it every six minutes which was nice at the beginning to curb the pain.

By Thursday, I had started to come around and began to feel better. I had ate some jello, showered and even walked a few laps around the floor. Everything was looking up. Thursday night I started feeling bad. I started to experience some diarrhea and well as some increased nausea. My parents were getting ready to leave and Jacob was going to stay the night with me. I ask my mom to stay just a little while longer until I got to feeling better but that never happen. Not long after that I started vomiting every time I moved until two or three the next morning. It was horrible. Every time I would vomit, my abdomen would feel as someone was twisting it and sticking a knife in it; horrible, horrible pain. During this time, I did something I feel so terrible about, I sent Jacob home for no apparent reason. Jacob has always been by my side through thick and thin. He stayed every night but this night. Morphine is not a good drug for me; it makes me feel strung out and clouds my thinking. No more morphine for me please.

Friday morning a doctor from the GI department came up and ask what was going on. By this point my mom had been rotating bathing basins instead of those little curved basins. My mom told him what was going on and he asked what color my vomit was. My mom said that it was the same color as my diarrhea (sorry if that is TMI but it is relevant). This had already crossed my mind earlier in the night when I saw it come out as I was throwing up, lovely – I’m throwing up poop in so many words but I was too sick to care. My mom looked at me and told the doctor to hold on a minute and he could see for himself and sure enough he did. The GI doctor was very sympathetic and I ask if my GI doctor was in. Within a short time, my GI doctor was in the room telling me that there was nothing they could do for me except put in an NG tube down my nose. The vomiting was coming from where my system had shut down during surgery and everything had backed up and there was nowhere for it to go except up. The NG tube would suction it out. I agreed to it because I was exhausted and couldn’t take much more.

They sent two nurses in with the NG tube shortly after to place the tube. They placed a good amount of KY Jelly on the end of the tube and had me drink cold water as they stuck the tube up my nose and down my throat. It didn’t work very well. I started projectile vomiting. This happened for an hour. After several attempts, they got the tube down. It was one of the hardest things I have ever experienced. I have a horrible gag reflex so that didn’t help at all. I kept the tube in until Tuesday I believe.

From Friday afternoon until Monday afternoon, I really have no memory of anything. I have bits and pieces. I had a foley catheter and that posed a whole big issue with my bladder. The nurses wanted it out and wanted to do in and out catheters and I told them I would do it myself since I know how. I didn’t want them touching me (lol, the morphine talking). Later in the afternoon, I told them to leave the foley in because I was too weak. This kept on going until my surgeon stepped in and told them to leave the foley in (thank you!).

Another issue was where my organs had stopped and there was the possibility of an ileus (an abdominal blockage). They needed to do an x-ray to confirm this. I didn’t want to go (again, the morphine talking). They brought x-ray to me but it wasn’t clear enough so I had to go. At first they brought a wheelchair. Yeah, I could barely sit up; there was no way I could ride from the eleventh floor down to one of the bottom floors to have a series of x-rays – forget it. They came back with a gurney. I agreed to go and I thought I’d die as they transferred me from the bed to the gurney. It was the longest ride. They said I’d be gone ten minutes, it took over an hour. When we got down there I had to wait for a few minutes and I got to thinking, I was the youngest person waiting and in the worse shape from appearance. I felt as if I was going to die. The x-ray technician was really nice. He asked what I had done and had the look of “oh my gosh!” He ask if I could stand for three x-rays each taking one minute each. Three minutes, he would have to help me up and he agreed. I sat up on the gurney and I was done; there was no way I could stand up for three minutes. We had to do the x-rays lying down. It was all I could do to roll over to get the films under me and he had to help me roll over, it was really bad.

Monday a friend from work came but I had no memory of it. Monday afternoon I remember because I remember things started turning around. Jacob and my dad told me over the weekend I would sleep with my eyes open. They would look over and I’d be there but I wouldn’t be, I’d just check out. Several people visited but I have no memory of it. My mom said I didn’t talk, I just answered in moans and groans. I defiantly don’t want to relive that weekend.

Monday when I started feeling better, I realized that I had the tube and it became really annoying. I couldn’t look at the liquids that it was pumping out. It was too nauseating. Since I hadn’t vomited recently, they took the tube out on Tuesday. Every morning at 6:25, anywhere from five to seven doctors would come in and examine me. They ask me if I’d like to have the tube removed; YES! It was super quick. All I had to do was breathe out and it was out. That day I started on liquids. The next day my surgeon wanted me to move up a step on the gastroparesis diet; mashed potatoes, rolls and toast. Everything stayed down believe it or not. The deal was if I threw up, the tube would come back into play. I did throw up one morning when they gave me medication. They gave me everything in pill form except my Protonix and Colace. It was NASTY! I only threw up the medication so it didn’t count luckily.

My surgeon couldn’t believe how everything had turned around. One day I went to the bathroom thirty-five times but since then it has slowed down. I ate five meals in the hospital and each went without a hitch. I spent nine nights and ten days in the hospital. He released me under the condition that if anything went wrong, vomiting, abnormal pain, not going to the bathroom right I have to come back. I was sooo happy to be released.

The almost hour long ride home wiped me out. I didn’t realize how weak I was until I got home. Since then, I’ve over done it several times but I am getting some of my strength back. I realized that this would be a hard surgery but I never realized just how hard of a surgery it was. I went into the hospital weighing one hundred four pounds and came out weighing ninety pounds. My diet now consists of mashed potatoes, bread and a few chips for flavor. I have sneaked some sugar cookies in there, I couldn’t resist. I am still very scared of food. I do not want to have deal with the possibility of having another ileus. The whole bathroom issue is slowing down which is nice. The whole process will just take time to adjust to learning what works with my stomach and it will take time for the bathroom issue to slow down.